We Shall Overcome

When There Aren't Any Answers

2011-11-18T09:19:00.001-05:00

"It's not this, but it could be that."

"It's not that, but it could be this."

"He may be at the beginning of something else auto immune-related that goes hand-in-hand with arthritis."

"Or, he may not be."

"He may have a food allergy."

"Or, he may not."

"His body is trying to tell us something. Something is definitely going on; something is trying to present itself."

"Why don't we try X, Y and Z and have him come back in a month for a follow-up."

Oh, what a wonderful mix of happiness, joy, confusion and frustration. Gotta love it. Gotta love this auto-immune roller coaster we are on. So, excuse me while I am "real" here for a moment. Excuse me while I get to be tired, exhausted and frustrated at the moment. Excuse me while I feel pulled in so many directions. Excuse me while I am very happy about the good news, but need to vent.

"What does this all mean?," you may ask. It means we do not have any answers yet. And we may never have any answers. All I know is, as his mother, something is not right with my son. Something is "off" with his system. Blood in stool is not normal. Chronic diarrhea is not normal. Vomiting after meals is not normal. Unexplained high fevers that come and go on their own are not normal. Tiredness and lethargy all day long for a four-year-old boy is not normal. This is not normal.

It is more than him just being a "picky eater." He will sit down to eat, suddenly feel sick and run to the bathroom and then complain of horrible stomach pain. He will ask me to save his food and to not get rid of it because he wants to "try again to eat." But the majority of the time he returns to the table after the pain subsides, he can not even take a bite because he feels so crummy. And, I am not going to force him to eat when I can clearly see how pale and sick he is.

Did I mention I am happy? Well, I am! It may be hard to detect, but I am! I am thrilled beyond words about the "good report" we received yesterday. I am focusing on that and rejoicing over this great news, but it is this "no news" that also puzzles me and hangs over me.

As of right now, the GI doctor said there is not enough "solid evidence" to say it is definitely Crohn's or definitely Celiac. Yes. After all my son has been through, after all the months and months of horrible symptoms, after going through an endoscopy, colonoscopy, and an upper GI we do not have any answers. Yet.

So, the "X, Y, and Z" his doctor is suggesting is removing all dairy from his diet. They said it will take several weeks before we know if it was dairy that was upsetting him because it will take that long for it to be out of his system. And, if that is the culprit then I am BEYOND THRILLED! I don't want my son to have Crohns. I don't want my son to have Celiac. I want him well! I am tired of seeing both of my kids health suffer. Beyond tired.

So, if that means "fixing him" by changing JJ's diet and controlling his joint pain through medicine then that is by FAR a better "diagnosis." We can work with that. That's the easy part. The hard part is the not knowing what to do for him right now.

After eliminating dairy from his system, if he is still having pain, they want us to try eliminating gluten. One thing at a time, though, because if we eliminate both at the same time right now we will not know which one was causing the problem, if it is, indeed, food-related. In the meantime, they want him on prilosec so he can take his arthritis medicine. Also, eliminating gluten from his diet will be more difficult because he is barely eating anything right now as it is. It leaves him with even few options. Right now he needs the extra calories since he has been over nine months now since he has gained a substantial amount of weight.

We do not have any answers, so we will continue to take each day as it comes. There are still many questions left unanswered: villi damage in intestines, elevated CBir1 antibody. His blood work from Wednesday came back and showed he still has an elevated sedimentation rate still, which his doctor now thinks may be related to the arthritis.

I spoke with the GI doctor again this morning and he said if he is still having pain through the weekend to page the doctor on call or to call first thing on Monday and we would "go from there." He wants to see him one month from now for a follow-up appointment. And the rheumatologist wants to see both Mia and JJ in the next week or so.

I have told the story of what has been happening in his body to doctor after doctor after doctor. I have taken him to numerous appointments (while he is having horrible diarrhea episodes). We have been more than patient with trying to figure all of this out. He is tired. I am tired for him. I want him well. He needs a break from all of this. We all do.

That is where we are at.

This is where I am at.

Waiting

2011-11-16T20:04:00.001-05:00

Today was long.

We took JJ to Tufts today for his scheduled MRI (which I fought hard to have moved up). A nurse met us in the MRI department and told us, "Mr. & Mrs. Del Turco, there has been a change of plans." Always a fun thing to here when you've planned for something else....when you had your son do the "prep" for one procedure and told him "X, Y & Z are going to happen to you today," and they decide to change things on you.

She went on to tell us that JJ's GI doctor and the radiologist talked and decided the anesthesia for the MRI would be too risky for JJ. He would have to drink a bunch of barium and then they would have to put him out so he would be perfectly still so they could get the pictures they needed. She said the amount of anesthesia they would have to give him might be too dangerous since he is so young. If it was an adult having this procedure done, they'd be able to drink the barium and then lay perfectly still. Not a four-year-old boy, though.

So, after all that....they decided an Upper GI Series would be a better plan to try to figure out what was going on with JJ's digestive system. He had to drink a big, thick cup of barium and then had to lay on the table as they watched it travel through his body and take pictures of it traveling through. Then they had him go out into the waiting room and drink another cup of barium (we had to do a lot of encouraging and coaxing to get him to drink it) and every 30 minutes we went back in for more x-rays. Once it reached the end of his colon, they were able to get the pictures they needed and see the area they can not see when they did the endoscopy or a colonoscopy.

I must say, my son did a remarkable job. So proud of him!

After that, we went to see his GI doctor a couple of floors down. By that point, JJ was starving and all he could talk about was getting an egg and cheese breakfast sandwich at Dunkin Donuts. I think every doctor and nurse knew what my son was craving because he told EVERYONE! So funny! Despite everything, he brought some humor to the situation. Love that boy!

We met with his doctor who told us it would take 24 hours to get the test results back and that he thought JJ might have some sort of inflammatory bowel disease (Crohn's or ulcerative colitis). He told us he would review the tests from today and let us know (hopefully) tomorrow. He also told us not to put him on a gluten-free diet just yet, but that we could eliminate dairy because it causes a lot of tummy trouble. He kept telling us, "Listen, his system is trying to tell us something here. His body is trying to say something. Things are definitely not right. We will get to the bottom of this." So good to have a doctor who is fighting with you for your child.

After the appointment, we headed back up one floor so JJ could get blood work done again (he just had blood work done on 11/1/11). By that point, his tummy was starting to bother him. When we left the hospital, he complained about tummy pain the entire way home. My sweet boy....today was so hard for him!

So now, we wait. Hopefully, we will have more answers tomorrow.

For now, I pray everyone in our house gets really good rest tonight, including myself, for it has been an incredibly long day.

Clear Eyes, MRI and Wrist Warmers

2011-11-14T17:57:00.001-05:00

Clear Eyes:

Mia has been on Indocin (4.5 mls, 2x a day) for 16 months now and has been doing very well on it. She does complain from time to time of pain in her writing hand (top knuckles), but other than that, she has been pain free! She also went in last Monday to MERSI to get her eyes checked for uveitis and got a report that her eyes are still clear! That is huge - she has had clear eyes since she was diagnosed with JA over four years ago. Thank you, God!

MRI:

JJ goes in this Wednesday morning to Tufts for an MRI (with sedation). They will be checking an area of the intestines they were not able to see when he had the endoscopy and colonoscopy last month. What are they checking for? Well, right now he is showing signs of Celiac AND signs of Crohns. So, the doctor is hoping the MRI will point us in the right direction as far as figuring out what is going on in his body right now. We are praying for answers to what has been going on with him. He continues to have joint pain in his ankles, left elbow and left wrist, along with stomach pain, chronic diarrhea, rectal bleeding, and shin pain and bruising. He is still skipping meals and if does he eats he usually tells me afterwards he feels "yucky." He has thrown up a couple of times after eating. Sometime he will say he is hungry, sit down at the table to eat (then run to the bathroom) try to take a bite and feel sick. He will then ask to be excused to lay down on the couch, but requests that I don't take his food away because he would like to try to eat it in a bit. However, most of the times when he comes back to the table, he is still feeling too crummy to eat. And so, he doesn't. And, we try to start fresh again the next day....

His rheumatologist contacted me and wants him back on the Mobic (Meloxicam - 1.3 mls, 1x a day). He has been off of it for over a month now. His GI doctor agrees with the rheum - he needs to go back on it to alleviate his joint pain. The rheum said to back off on the Mobic if he is feeling any worse while on it. So, we will see how this goes. I started him back on it tonight. Right now, he has the rice sock (the only one we have that my cousin made for ME many, many moons ago) on his tummy and says his legs (shins) hurt and he feels "yucky." I do what I do every night: pray over him, make him as comfortable as possible, heat up the rice sock several times until he finally falls asleep with it either on his tummy or on his legs. In the morning, the first thing that wakes him up is tummy pain/discomfort.

I will keep you posted on how everything goes with JJ on Wednesday. He has an appointment with his GI doctor immediately after the MRI. Thank you to all of you who have texted, emailed and called to inquire as to how he is doing. We appreciate all of your love, prayers, kind words of advice and encouragement right now.

Wrist Warmers:

In other news, I was perusing Pinterest a few weeks ago and found these awesome "wrist warmers" - I like to call them "wrist soothers" or "pain alleviators" - for those with arthritis. I thought I'd pass them on to all of my arthritis friends (helloooo! stocking stuffers!!!). This seller, The Ferris Wheel, has several different "warmers" featured in their shop. My kids both want one (and I would not mind them having one of their very own so they would stop fighting over MINE! Ha!). Definitely a great Christmas gift idea for those suffering from RA and little ones suffering from JA. I know our rice sock is in constant demand in our house and gets used on a daily basis. I think I might need to pick up a few of these:

Persistence Pays Off!

2011-11-07T18:41:00.000-05:00

JJ:

After numerous phone calls today, trying to be as polite but as firm as I could be, I was able to get JJ's MRI moved up from 11/23 to 11/16. His symptoms continued today, but at least we are getting somewhere. Blood work came back showing an elevated sed rate, but we don't know if that is from the arthritis or from something else going on in his body. CBir1 still elevated over 100 still and villi damage. Now we only have to wait eight days instead of 16 for the MRI. I'll take it! Thank you, God, for opening doors!!

Mia:

Clear eyes today! Clear eyes for the last FOUR YEARS! She goes back in February for her next check-up. Her brother will be going with her at this appointment (he goes every 6 months now; Mia goes every 3 months).

James:

My sweet boy is making progress in physical therapy and speech therapy. Slowly, but surely, he will get there!

Tomorrow is a new day and this Momma is ready for bed!!

You Belong To God

2011-11-07T09:49:00.003-05:00

Children, you belong to God, and you have defeated these enemies. God’s Spirit is in you and is more powerful than the one that is in the world.
1 John 4:4

For those who pray, we are asking for prayers today.

JJ's symptoms - stomach pain, chronic diarrhea, shin and foot pain - have not stopped. On Friday, he vomited immediately after eating dinner. Eating food has been a challenge. He is strongest in the morning and will eat a gluten free/dairy free waffle and Chiobani yogurt and drink a Good Belly drink, but after breakfast is when the lethargy and no desire to eat for the rest of the day sets in.

This has been going on for months.

This has to end.

Doctors told us the earliest they can get him in for an MRI is November 23rd at 9:00 a.m. He has to be sedated because he is so young. Which means we have to wait another TWO WEEKS for an MRI. Ridiculous.

I put a call in this morning to the Pediatric GI department at Tufts to stress the importance of moving the MRI up. The receptionist remembered me from last week (it is nice when you don't have to retell your child's story; when you get someone who remembers!). She said the only one who can move up the MRI is the doctor and told me she would page him immediately and then call me back.

Now we wait.

Please pray for JJ today. God is his Healer. God will open these closed doors. We speak peace to JJ's body - to his immune system and his digestive system. Hidden things revealed. Now!

Jonathan Mark Del Turco, III belongs to God!!

With Us

2011-11-07T07:02:00.000-05:00

There is no end to His love. He's with us.

Catching My Breath

2011-11-02T09:56:00.000-04:00

If your heart is broken, you'll find God right there; if you're kicked in the gut, he'll help you catch your breath. - Psam 34:18

Yesterday was one of those days where I found myself shouting, "FINALLY!" and then "WHY??" at the same time. Yes, it is great to finally feel like we are getting some answers to what has been going on with JJ for the last nine months (well, the last 18 months if you want to count when the joint pain started). But, now that these answers are starting to present themselves, I can't help but ask, "WHY is this happening to our son?"

Brief recap:
JJ, was diagnosed with JRA back in April 2011. He was immediately put on Naproxen and started experiencing severe stomach pain and diarrhea. He was also extremely lethargic. He would sleep many hours in the afternoon and always looked pale. His appetite started to really take a hit, too. He would skip meals, only want soft foods (applesauce, yogurt, soft waffles, pastina, etc.). It was a lot more than just being a "picky eater" or "stubborn." My mom gut told me something else was going on with him. Our son was just not right.

In July 2011, his doctor switched him over to Meloxicam (Mobic) for his joint pain. So far so good. It did not take away all of the tummy issues, but it did lessen them...for a bit. One thing she did notice was JJ was not gaining weight. He has been at a steady 35 lbs. since last March. In July and August she ordered several things to be done:

Ultrasounds on his hips (she detected arthritis on the right hip), and ultrasounds on both elbows and wrists. The ultrasounds showed there was no arthritis on his hip but in his left wrist and left elbow (also, fluid sitting on his left elbow). She also ordered a full round of x-rays on all of his joints (neck, elbows, wrists, hands, hips, knees, ankles and toes). The x-rays confirmed that the left elbow, left wrist and left knee were all affected by arthritis. After all of that, she said for us to make a follow-up appointment a month from then (September) to see how JJ was doing on the new medicine and also check him for Celiac Disease because he was not gaining weight.

Preschool started up in mid-September. That following Monday, only the second week into school, JJ was hit with a temp of 104 and I rushed him to the ER. The doctor said he had coxsacchi virus (hand foot and mouth) and stomatitis. He was having severe pain in his tummy and the fever was doing a number on him as well - pale, not talking, lethargic, eyes rolling. I brought the Pedi ER doctor up to speed on what had been going on with JJ since he was diagnosed with JRA and requested blood work to be done to check for Celiac Disease, Crohns and Colitis. She told me while she did agree those things needed to be checked for based upon the symptoms he was having, that the arthritis was going to throw everything off. She said most likely the tests would come back showing a high sedimentation rate (inflammation in the body) and there would be no way of telling if that was the arthritis or if he had Crohns or Colitis that was causing his sed rate to be high. She ordered the tests anyways, and they came back just as she said - high sed rate. There was no way to tell because the arthritis "masks" everything. She gave him fluids and tylenol to get the fever down and, in the end, told us the best way to find out if he had Crohns or Colitis would be through a colonoscopy and suggested we schedule an appointment with a GI doctor.

The following week JJ started back up on the Meloxicam and returned to school.

And then, JJ got hit again the first week of October - severe stomach pain, diarrhea that was happening about every 15-20 mins, fever of 100.3 and vomiting every morning around 5am (he would only vomit around that time every morning....never throughout the day). I knew this wasn't just a "bug," but that something else was going on. I called my other son's pedi gastrointestinal doctor (we are at Tufts a lot...for all three kids) and they told me to bring him in. We were there for hours because as soon as the doctor would come in, JJ had to rush out to go to the bathroom because of the diarreha. By the time we had gone back to the room, the doctor had left to go check on another patient. This went on for hours. Finally, the doctor told us to stop the Meloxicam and start him on Prilosec and to keep an eye him over the next 24-48 hours. If he stayed the same or got worse to bring him back in and he'd schedule a colonoscopy and endoscopy.

When we got home that afternoon, JJ took a long nap and then woke up screaming from pain in his ankles. I have never heard him cry like that before. He was beyond miserable. He could not even stand up to walk. He told me he had to go potty, so I had to carry him and even then he could not stand at the toilet to go because his ankles hurt him so bad. So, I held him up and then carried him back to bed and he asked me to put ice packs on his ankles for the pain. I did and immediately called the rheumatologist on-call. He told me I could only give him Tylenol for the pain and to try to put him in a warm bath and to call back if he got worse.

Eventually, the pain in his ankles did subside, but his other symptoms (stomach pain and diarrhea) did not. We were back at Tufts two days later, repeating everything all over again.

They scheduled an endoscopy and colonoscopy on 10/7/11 for JJ. My other son's doctor did the procedures on JJ. He took biopsies of different areas in the upper and lower intestines and told us it would take 7-10 days to get those reports back.

It took about a week for the diarrhea to completely subside and for JJ to get a little bit of his appetite back. Still not normal, though. He would eat a bit of breakfast every morning, but getting him to eat anything for lunch or dinner was impossible. Some nights, he was asking to go to bed at 5:30 p.m. (that is if he did not take a 3-4 hour nap that afternoon).

Then the biopsies came back showing some inflammation in the upper intestines. However, the doctor said he wanted to wait for the pathology report to come back to tell us if JJ was at the beginning of something (Crohns, Colitis or Celiac). Until the pathology report came back, the rheumatologist instructed us to hold off on all arthritis meds.

So, we wait another two weeks. In the meantime, JJ's immune system has just had it. The diarrhea and stomach pain are back and now he has a upper respiratory infection to boot.

FINALLY, I took him yesterday to see the pedi GI doctor to discuss the pathology reports. He said several things:

1. There is villi damage in JJ's small intestines, which is an indicator of Celiac Disease:

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.

2. JJ's CBir1 antibody test (marker for Crohn's) came back very high. Normal is 34 or below. JJ was over 100. The other marker for Crohn's they check for came back negative, but that marker only comes back positive in 30 percent of people who have Crohns. The only way to determine if it is Crohn's is through an MRI.

3. After examining JJ, the doctor saw that he has "skin lesions" on his shins, a common sypmtom of Crohn's Disease. He immediately took pictures of his shins for documentation and that was when he said he was leaning more towards this being Crohn's, but wanted to schedule an MRI to confirm. JJ has all the other symptoms: chronic diarrhea, stomach pain, rectal bleeding, no weight gain, etc. The doctor said there is a large portion of the intestines they were not able to see during the endoscopy and colonoscopy that the MRI will show. The MRI is scheduled for 11/17 and JJ will be sedated for it.

So, we are looking at one of two things here - either Celiac or Crohn's. The doctor told us, of the two diseases, Celiac is the better one to have because it can be controlled with diet. If it is Crohn's, as he suspects, JJ will need to start immediately on Methotrexate (injections) to control both the Crohn's and arthritis.

As a parent, I just want to see my son better. This has been going on for far too long. I want him to eat and not complain that he feels sick afterwards. I want these random fevers to stop. I want him to be strong and to be gaining weight, not pale and lethargic. I want him to be outside, running around and playing like most four-year-old boys do, not taking four hour naps in the afternoon or saying he wants to sleep when he is school. I want the stomach pain and joint pain to stop. I don't want him missing out on life. Most importantly, I want to get him feeling better fast. And, if that means starting him on Methotrexate to help him, provided that it is Crohn's that we are dealing with here, then I am all for it.

Yes, I feel like I have been "kicked in the gut." No parent likes to hear bad news about their child. But, He is helping me to "catch my breath." God will not give us more than we can handle. So, we can handle this. We will get through this, just like we have gotten through everything else with our children's health challenges. And, our children will have amazing testimonies to share of how they overcame these challenges.

THEY ARE OVERCOMERS.

World Arthritis Day 2011

2011-10-12T19:52:00.000-04:00

World Arthritis Day Recognized!

The Empire State Building, in partnership with the Arthritis Foundation, will be illuminated in blue on the evening of October 12 to commemorate World Arthritis Day and honor the 50 million Americans who have arthritis, the nation's leading cause of disability.

Flare?

2011-09-13T21:17:00.000-04:00

Last Friday, she fell when she stepped off the bus. She stepped off the bottom step with her left leg (the weaker of the two) and it did not support her. Her knee buckled and she fell.

Ten minutes later, she was telling me about her day and went to take a step backward with her left leg and her knee gave out again. Down she went. I try not to make a big deal about it when it happens, but I can't help but think, "What the heck?!"

And, that's when I remembered. Jay and I have seen this happen before. Right before a flare.

So, I was quite mad at myself today for not listening to my "mommy gut" on Sunday when I agreed to let her do the bouncy house at our annual church event. I watched her jump and jump and jump some more while I kept thinking to myself, "This is a bad idea. This is a bad idea!" But, how do you say "no" to your child when she wants to have fun with her friends? How do you tell her, "They can, but you can't." It sure is hard. Especially when everyone around you is saying, "Let her be a kid! Let her have fun!" But, they don't see the aftermath of what a bouncy house can do...

The left is clearly bigger than the right, but the right is also a bit puffy. See those lovely red spots on top of her knees (especially the one above her left kneecap)? Well, what we've learned from almost four years of PT is redness on skin near a joint indicates where fluid sits. And boy, were both knees hot!

She has not woken up with joint pain in over a year now.

It's not fun when your child wakes up and starts her day with pain. It's not fun watching her try to straighten her legs and can't. It is not fun watching her limp to the bathroom or have her beg you to carry her.

No one sees THAT, but me.

She did go to to school today. But, around 10:30 a.m. I received an email from her teacher saying she was complaining of knee pain. Her teacher told the gym teacher to allow Mia to self-limit in class so as to not aggravate her joints in any way. When she got off the bus today, she was in tears. So, off to bed she went and she slept for two hours.

In the meantime, I emailed her rheumatologist to give her the update. I am still waiting to hear back.

Most importantly, we pray for our sweet girl and put everything in His hands.

Having a GoodBelly Helps Strengthen Ones Immune System

2011-09-04T23:44:00.003-04:00

From the very beginning of our journey, we have believed that diet has had a role to play in our fight against juvenile rheumatoid arthritis. We have witnessed it first-hand - when Mia was 22 months old and diagnosed with JRA, we put her on a gluten-free, dairy-free, egg-free diet and added cod liver oil in and within a month her sedementation rate (inflammation in her body) dropped drastically. Doctors and therapists were amazed at how quickly we were able to get her flare under control.

But now, we have two kids fighting the same disease. JJ has only been on NSAIDs since April 2011 (Naproxen and now Meloxicam). But, Mia has been on NSAIDs (Naproxen, Ibuprofen and now Indomethacin) for 4 year now. I know there are worse, stronger arthritis meds out there, but still, that is a long time for a child to be on medicine...every day...twice a day...no breaks....no remissions (yet!).

In the meantime, I am going back to the beginning. Turning over every rock. Comparing their vaccinations, from their first shot to their most recent. And, doing whatever I can for them NOW to protect their bodies from any long-term, potential damage caused by their daily medicines.

So, when a friend suggested I try something new, something healthy for my kids - something that would help their immune systems and their tummies, too - I said, "Yes! Absolutely yes!" While NSAIDs keep joints happy, over time they destroy tummies and intestinal tracts. This isn't anything new. We knew this when we started our journey with Mia. It is in the long list of side effects on every NSAID my kids have taken. However, alleviating their pain and getting the flares under control far outweighs the side effects of their medicines. You do what you can immediately to make them better, fast. But, truthfully, what has always been in the back of my mind is, "What is this going to do to their bodies in the long run? Will there be side effects to deal with down the road?"

I watched the video and I was sold. I knew I could not pass this up. I immediately went out and bought our family some GoodBelly juice!

The way I see it is, "What can it hurt? If anything is will help their immune systems AND help their tummies at the same time!" Double bonus.

My friend also shared this article with me that was in Science Daily entitled, "Study Finds More Gut Reaction to Arthritis Drugs; Stomach Acid-Suppressing Drugs Appear to Damage Small Intestine." Here is an excerpt from the article:

"Suppressing acid secretion is effective for protecting the stomach from damage caused by NSAIDs, but these drugs appear to be shifting the damage from the stomach to the small intestine, where the ulcers may be more dangerous and more difficult to treat," said Wallace. He is director of the Farncombe institute and professor of medicine of the Michael G. DeGroote School of Medicine at McMaster.

He added that the use of probiotics is being investigated as a potential cure for the small intestine damage.

So, bottoms up! Here's to probiotics and trying new things that can only help along the way.

Rheum Report

2011-08-16T16:05:00.001-04:00

While we were on vacation, taking a break from life, JJ's rheum emailed me and told me the results of his ultrasounds and x-rays on his joints (elbows, wrists, hands, hips, knees, ankles, feet and toes). She said:

"The ultrasounds showed arthritis in the left wrist and left elbow (as we suspected). The other films were okay, including his neck."

So, based upon this report and the ultrasound he had done this past May on his knees, the results show there is arthritis in the following joints:

- left elbow (fluid sitting on the joint)
- left wrist
- left knee (fluid sitting on the joint)

Praising and thanking God there is no arthritis in his hips or neck!! This is HUGE!

He has been on Meloxicam for the past week now and it is much gentler on his tummy. While it is a stronger medicine, he loves that he only has to take it once a day! So glad to have found something that alleviates the pain in his joints and leaves him with a happy tummy.

Up next: uveitis check-up this Friday at MERSI for both Mia and JJ.

Waiting

2011-08-10T17:00:00.000-04:00

Yesterday was definitely one of our longest appointments at Tufts since we started going there four years ago this month. Jokingly, I told my husband, "We should buy an apartment in Boston to save on gas and parking!"

Hm. Something to consider! ;o)

We got there at 9:30 a.m. for JJ's ultrasounds and x-rays. JJ did a remarkable job! He had to lay completely still for 1.5 hours as they did ultrasounds of his hips, elbows and wrists. How many four-year-old boys do you know who can lay completely still and not move for that long? It took some encouragement from me, but he did it. And, was very happy when it was over. The ultrasound not only shows if there is fluid on the joints, but also shows if there is increased blood flow to the joints, which indicates there is inflammation in that particular joint. An ultrasound was already done on his knees back in April, showing there is fluid on the left. The hips, elbows and wrist were checked yesterday because they are still bothering him, even after he has been on Naproxen for the last several months.

Then we we headed over to have x-rays done of his neck, wrists, hands, hips, knees, ankles, feet and toes. This is what the rheumatologist did when Mia was first diagnosed four years ago and what should have been done for JJ this past April when he was officially diagnosed with JA.

Sometimes, going with your gut and switching doctors really does prove to be the best decision after all.

It was noon when we were finally taking a break for lunch.
Mommy Tip: If you ever have to spend a day at Tufts with two young children, do not, I repeat, DO NO venture into Chinatown to take them to McDonalds. No matter how much they beg.

It is a bad idea.

And that is all I have to say on the matter. :)

After lunch, we headed up to the sixth floor to the Otolaryngology Department for a post-tonsilectomy and - adenoidectomy appointment for Mia and an appointment for JJ for the ENT to check his tonsils. (Keep in mind it is now 2:00 p.m. and both kids have just about had it with their day trip to Tufts!) Mia went first. Technically, this was our second post-surgery visit for Mia. We had to take her back six days after surgery because she started having horrible pain on the tip of her tongue that was keeping everyone up at night. This unusual pain wasn't from the instruments they used to depress the tongue during surgery. That pain would have occurred a day or two after surgery, not six days after and not on the tip of her tongue.

The ENT spoke to the rheumatologist and they both agreed that Mia's immune system was acting up. The pain on her tongue was because she had coxsackie virus (hand, foot and mouth disease). She was hurting more from having coxsackie than from the tonsillectomy! When he looked in her mouth yesterday, he said the surgery site looked great, but she still had some ulcers in the back of her throat from the virus. And, there is nothing we can do for her. We have to ride it out.

We brought JJ in to see the ENT because he has been having eating issues and we wanted to make sure his tonsils were not causing the problem. He will only eat soft foods (pastina, yogurt, applesauce, oatmeal) and hard foods (carrots, apples, chicken nuggets, fries) take him forever to eat and sometime he chokes. He went through a series of questions with us concerning JJ. He asked us: "Does he clear his throat often?" "Yes." "Does he snore?" "No." "Does he get ear infections and chronic colds?" "Yes, in the winter months." JJ gets more ear infections than any of my other kids. "Is he gaining weight?" "No." We told him his rheum noticed that last week at his appointment and is testing him next month for Celiac Disease.

After asking us a slew of questions, the ENT checked out JJ's tonsils and said they are large, but not as large as Mia's were (tonsils peak between ages 5-8). He recommended that JJ should see a Feeding Specialist at Tufts (I am thinking in my head, "Yes, let's definitely start looking for an apartment in the area!"). They would be able to tell if the tonsils were the problem or not. If they are, then they will be coming out. If not, then there is no reason to mess with them.

In other news: JJ started taking Meloxicam (Mobic) this past Monday and really likes taking his medicine only once a day instead of twice.

Up next for JJ: appointment with Feeding Specialist and then getting checked for Celiac Disease next month. We should have the results of the ultrasounds and x-rays back by this Friday/next Monday.

Up next for Mia: 504 Plan meeting for kindergarten with Head Teacher.

Up next for both kids: Uveitis check-ups at MERSI next Friday.

Up next for Mommy: a nap.

Tonight's Prayer

2011-08-09T01:02:00.000-04:00

This is what I do on the eve of our appointments in Boston.: I stay up. I check on them. I pray for them. I check on them again. And, I don't sleep much.

But tonight, I decided to do something different. Instead of going to bed with dread hanging over me and waking up with it in the morning as I wonder what new news tomorrow's appointments will bring, I decided to prepare myself mentally, emotionally, physically, SPIRITUALLY now for our son, Jonathan, and for his appointments tomorrow in Boston.

Tonight's prayer...

Sweetest boy with such a tender soul, I pray for you tonight. I just tucked you in one last time, after you just fell out of bed, and I pray for peace to flood you through and through, touching every swollen, achy joint even as you sleep. Tomorrow will be a good day, as we face it together as a family. We will hear good news and good reports. And, despite what we are told, we know what the final outcome will be - we win. Period. I thank God now for the good news that will come. It might not happen immediately, but it will happen. We believe this for you. We stand strong for you. We pray constantly for you. And, we will not stop fighting for you....or your sister.

In the meantime, we love you. Dearly.

“So now, take your positions and watch this great thing that the Lord is about to do in your sight.

1 Samuel 12:16

"Hero Foods"

2011-08-05T08:39:00.001-04:00

I have said it before and will say it again, "There is healing in eating the right foods." Especially foods that fight AGAINST arthritis and promote a healthy immune system - like cod liver oil, which my kids take every day.

And, if you still don't believe me, read this chef's story that was featured in The New York Times about his "hero foods."

Incredible!

JJ: Switching Meds

2011-08-04T14:54:00.000-04:00

I took my gang to JJ's follow-up appointment today with our new rheumatologist, Dr. Miller. She is wonderful. I am really, really, really glad we switched doctors. She is so thorough with her exam and my kids really, really like her. You don't always get a doctor who not only knows what he/she is doing AND has wonderful bedside manner...especially with kids. I love that!

JJ has been on naproxen since April. It has definitely helped to ease his pain, especially in his knees, ankles and toes. His energy did take a big dip in the very beginning and we took him off the naproxen for three day and in those three days his pain was back in his knees, ankles and toes. He was waking up at night again, screaming from joint pain and was complaining about pain when he woke up in the morning. So, back on naproxen he went. However, to keep his energy up, but control his pain, he went from 10mls to 8mls of naproxen per day.

While the naproxen has helped some joints, it has not eliminated pain in other joints. He has fluid sitting on his left elbow (he can barely touch his left hand up to his left shoulder without yelling and pulling his arm away from you), his left wrist is now swollen and stiff and Dr. Miller also believes he has arthritis now in his right hip. When she went to check his hips, he winced from pain when she checked the right side (Have I mentioned how much I love her thorough exams?? Our previous doctor NEVER checked for these things!)

In addition to joint pain, he has also had tummy troubles since he started the naproxen. We started him on Zantac two weeks ago (1mls - 3x a day) and he still has stomach pain. So, because the naproxen is not taking care of all of the joints and because he is still having stomach pain, Dr. Miller is switching him to a new medicine - Mobic (Meloxicam). It is still an NSAID, but it is supposed to be easier on the stomach. And, the nice thing is he only has to take 0.5 mls once a day! He is to continue the Zantac while he is on Mobic (Meloxicam).

Dr. Miller was concerned that JJ has not put on any weight since March. So, because of all the tummy trouble he has had and no weight gain, she wants labs done to have him tested for Celiac Disease when he comes back in a month for a follow-up appointment.

In the meantime, when Mia goes in for her post-surgery follow-up appointment on Tuesday, August 9 with Dr. Vecchiotti to check to see how everything looks after the tonsillectomy and adenoidectomy she had a few weeks ago, Dr. Miller wants ultrasounds and x-rays done of several of JJ's joints: neck, elbows, wrists, and hips. It will be one very full, very long day for us at Tufts - JJ's ultrasounds and x-rays will be all morning long, then a break for lunch and then off to see the ENT at 1:15 p.m.

So, we will start this new medicine and see how he does on it. Unlike naproxen where I know what the side effects may be (stomach pain, bruising easily, etc.), Mia has never taken Mobic (Meloxicam) before. I am praying this new medicine will be easier on his system and bring his joints some much needed relief.

Up next: August 19 - Uveitis appointments at MERSI for both Mia and JJ.

In the meantime, we will be enjoying the rest of our summer. It has flown by so quickly! Can you believe Halloween has already hit the stores?? Before you know it, school will be in full swing with Mia in kindergarten and JJ in preschool five days a week. I am hoping to catch up on my sleep a bit this month and enjoy these last few weeks with my kiddos before things really start to speed up! :)

Happy summer to you all!

I Remain Confident

2011-07-28T23:25:00.000-04:00

Psalm 27

1 The Lord is my light and my salvation— whom shall I fear?  The Lord is the stronghold of my life— of whom shall I be afraid?

2 When the wicked advance against me  to devour me,  it is my enemies and my foes  who will stumble and fall.

3 Though an army besiege me,  my heart will not fear;  though war break out against me,  even then I will be confident.

4 One thing I ask from the Lord,  this only do I seek:  that I may dwell in the house of the Lord  all the days of my life,  to gaze on the beauty of the Lord  and to seek him in his temple.

5 For in the day of trouble  he will keep me safe in his dwelling;  he will hide me in the shelter of his sacred tent  and set me high upon a rock.

6 Then my head will be exalted  above the enemies who surround me;  at His sacred tent I will sacrifice with shouts of joy;  I will sing and make music to the Lord.

7 Hear my voice when I call, Lord;  be merciful to me and answer me.

8 My heart says of you, "Seek his face!"  Your face, Lord, I will seek.

9 Do not hide your face from me,  do not turn your servant away in anger;  you have been my helper.  Do not reject me or forsake me,  God my Savior.

10 Though my father and mother forsake me,  the Lord will receive me.

11 Teach me your way, Lord;  lead me in a straight path  because of my oppressors.

12 Do not turn me over to the desire of my foes,  for false witnesses rise up against me,  spouting malicious accusations.

13 I remain confident of this:  I will see the goodness of the Lord  in the land of the living.

14 Wait for the Lord;  be strong and take heart  and wait for the Lord.

Goodbye Tonsils! Goodbye Adenoids!

2011-07-19T06:00:00.000-04:00

We are taking our daughter in to Boston this morning to have her tonsils and adenoids removed. Kind of a hard thing to explain to a 5.5 year old, especially when we say the word "hospital" to her and the first thing she remembers is when she was 3 years and had her joints drained and injected (kids remember everything! EVERYTHING!). After we told her today, she asked me, "Well, will they grow back??" Sweet, sweet girl!! Let's pray they don't!

Mia will be staying on Indocin (her arthritis meds; 9mls total) during the healing process. Her rheumatologist and otolaryngologist are working together to make this surgery and recovery as easy as possible for Mia. She is in good hands - with her doctors and with her family. Mommy and Daddy will be there every step of the way!

So, dear friends, if you think of it as you go about your day, please pray for our sweet girl:

Please pray for no fear.

Please pray for the doctors.

Please pray for wisdom.

Please pray for a quick recovery.

Please pray for NO FLARES.

Please pray for our family.

"There's hope for your children." God's Decree.

Jeremiah 31:17

"As a mother comforts her child, so I'll comfort you."

Isaiah 66:13

Two BIG "OOPS"!

2011-07-13T09:17:00.002-04:00

On Monday, we were told Mia had polyarticular arthritis and JJ had systemic arthritis.

On Tuesday, we were told that was a big mistake.

Mia and JJ both have oligoarticular arthritis (Mia has developed extended oligo in her writing hand). Oligo is a lot different than poly and a LOT different than systemic, but still serious. And, both kids still need treatment.

How this "oops" happened:

Apparently, a number is assigned to each patient based upon their symptoms/diagnosis. I watched the nurse look up Mia's "number" on her chart. She then proceeded to look her number up on a list to find out what type of JA she had (we were always told Mia had "pauci"...which is "oligo"). I watched her write "polyarthritis" down on her blood work order and hand it to me (I have it here at home):

So, I asked her what JJ's chart said about him (we have never been told officially what type of JA his has). So, she looked it up...and pointed to the word "systemic" on the list and gave me a look that said, "I am terribly sorry!"

After informing my husband of this horrible news, I just sat there during the drive home and kept saying, "I am completely baffled." JJ has had fevers in the past not associated with a cold/flu and has always run a bit warm, BUT to say he is systemic is extremely serious. JJ definitely is not systemic.

So, I emailed the doctor yesterday to confirm what I had been told and she called me back Tuesday evening and apologized for the "mix-up" and explained that the manual number system and the computer number system were different (?) and that Mia and JJ were definitely NOT poly and systemic. Well, thank God for mistakes!

Oligo is...

Formerly known as pauciarticular this type, is diagnosed when four or fewer joints – “pauci” and “oligo” mean “few” – are involved within the first six months. It’s particularly common in Caucasian children and accounts for about 40 percent of new JIA cases in that group. Girls are more likely to be diagnosed with oligoarthritis and to experience eye inflammation, a condition called uveitis. Oligoarthritis typically develops by age 6. At diagnosis, frequently only one joint is involved and it’s commonly a joint in the leg, such as the knee or the ankle.

If your child also tests positive for a particular antibody in the blood, called the antinuclear antibody (ANA), she faces the greatest risk of developing eye inflammation and will be monitored very closely for eye problems. Compared with other types of JIA, children with oligoarthritis are less vulnerable to severe problems with joint function.

Under the JIA criteria, oligoarthritis is broken into two groups. Children in which the arthritis is confined to four or fewer limbs fall into a category called persistent oligoarthritis. After the six-month window, some children will develop symptoms in additional limbs and will be diagnosed with extended oligoarthritis.

Treatment for Mia (ANA+):

Now on her third NSAID, and after increasing her dosage of Indocin from 6mls to 9mls, I asked the doctor, "Where are we going with this? What's next for Mia?" I explained the pattern we have seen for almost the last four years: Mia goes on Naproxen for a year and a half. Mia flares. Change meds. Mia goes on Ibuprofen (after receiving a drain and injection in her left knee and right elbow in Spring 2009). She goes on Ibuprofen for a year. Joints flare. Change meds. Mia goes on Indocin (a year ago next month). There is talk of remission and possibly starting to wean her off of meds (the is our second talk of remission since dx) and then hand starts to flare and we increase her meds.

Plan: see how she does on the increase dosage of Indocin. Need to get the swelling down in her hand and reduce the pain so it does not affect her when she starts kindergarten this fall, as the pain and swelling are in her writing hand. If her body does not respond to meds and if she continues to flare, the doctor would like to start her on methotrexate. However, before we do that, she really wants to give this a try because she said, "Mia is still so very young. She is only five years old. And, while methotrexate does treat the disease, it comes with a ton of side effects that we will discuss when/if we reach that point. But, because of those reasons, I'd like to stick with NSAIDS for now."

Treatment for JJ (ANA-):

JJ's x-rays of his elbows showed he has a "small joint effusion" on his left elbow. The doctor mentioned draining and injecting that elbow should his joints not respond when to Naproxen. However, we are having a love-hate relationship with Naproxen right now. It greatly reduces the pain in his joints (not all of his joints, but most of them), but it is increasing the pain in his stomach. Since starting Naproxen, he has had several episodes of extreme tummy pain and/or doubled over in pain from cramping.The same thing happened with Mia when she was on Naproxen after several months. So, they are starting JJ on Zantac (1ml, 3x a day) to help reduce the pain. If this does not help, then we will need to switch to a different NSAID to find something that works for his entire body.

When we are going back: 3 weeks from now (after Mia's surgery)

"His huge outstretched arms protect you-under them you're perfectly safe; His arms fend off all harm."

(Psalm 91:4 MSG)

We Do Not Lose Hope!

2011-07-11T23:59:00.000-04:00

Yeah, today was one of those days. It was the kind of day where you want it to be a really quick in-and-out check up for both kids (that's right...two kids with JA), but instead you are there for three hours and find out really crummy news.

Mommy side note: glad I thought ahead and made dinner before we made our trek into Boston to see the rheumatologist. Meatloaf and mashed potatoes were waiting for us after our three-hour appointment with all three kids in tow!

Mia's appointment was supposed to be a "clearance for surgery" appointment. She is scheduled to have a tonsillectomy and adenoidectomy next Tuesday (July 19th) at Tufts. Smack in the middle of summer. (Yeah, yuck.)

Backing up a bit....

In April 2011, I took Mia to see an ENT to get a second opinion on her ears - she has had an unusual sensitivity to certain sounds - the click of the seatbelt, the car door opening, going from inside of the house to the outside all bother her. While we still don't have an answer to the problem with her ears, during the appointment, the ENT happened to look in her mouth and told me, "Her tonsils are the size of two large walnuts. Have you seen these??" He continued to ask me if she has a problem with choking. I said, "She has...on raw fruits and veggies, like carrots and apples." He then asked me if she snores at night. I said, "She does....she has even had a couple episodes where she has stopped breathing for a second and then starts back up again (sleep apnea)." He said, "That's a result of the tonsils. They are so large that when she goes to sleep and her throat relaxes, those two tonsils almost touch and prevent air from passing through."

So. Those two walnut-sized suckahs are coming out next week. And, personally, I could not be happier because I really hate watching her choke on food and hearing her snore at night.

At the request of her rheumatologist, and recommendation of my dear friend Joanne, we changed over to a doctor he works with at Tufts and are really happy we did! Unlike the previous ENT, this one said Mia can continue with her arthritis meds (Indocin) AND take Tylenol with codeine (post surgery med) at the same time. He told us, "The surgery itself is simple, but I will not sugarcoat this - the recovery is brutal! It's two full weeks of a very sore throat." I think to myself, "Eh. She's gone through worse stuff. She can make it through this!"

The concern right now is how her body will respond during and after surgery in relation to her recovery and her arthritis.

Today, we met with a different doctor (Dr. Miller...who we LOVED!) because Dr. Lopez is on vacation and we could not get Mia in before surgery and she needed to have pre-op "clearance." First off, I loved that I did not have to introduce my children to her. As soon as she walked in, she introduced herself and told me, "I know your family. I have known you for years. Your children's health is discussed in our meetings that we have every Friday." I was shocked. That speaks volumes...especially to a mother.

She started with Mia. She had her do "exercises" to test her joints that have never been done on her before. I was impressed, to say the least. Then she asked Mia where her pain was and Mia pointed to her right hand (her writing hand). After examining her hand, she agreed that she has two very swollen knuckles on the top of her index finger and her middle finger. She told Dr. Miller, "It hurts when I draw and when I write." Dr. Miller told me she definitely needs at 504 in place for kindergarten this fall (her pediatrician also confirmed this several months ago).

So, while we were told we may be able to start weaning her off her meds this summer, we are now INCREASING her dose because 1) her weight has gone up since her last visit (42 lbs.) and 2) her body obviously needs it. Mia will be going from 6mls (3mls, twice a day) to 9mls (4.5mls, twice a day). She can not take cod liver oil right now because it is a blood thinner. She ordered bloodwork to be done on Mia because 1) she needs to make sure she is okay for surgery and 2) make sure her blood coagulates as it should.

Good news with Mia: her leg length discrepancy has gone from 2cm difference to .5cm difference. She does not have a hint of scoliosis in her back anymore. SO HAPPY!!

On to JJ: When he is off meds, JJ's joint pain has been in the following areas: ankles, toes, writs, elbows and today he said his neck hurt. On meds, the pain is in his elbows - specifically, his left one. He can barely touch his fingertips to his shoulder without yelling from the pain. Dr. Miller also examined his tonsils and said we need to have him checked by the same ENT because she thinks they need to come out. Bah.

The really crummy news: JJ has been diagnosed with Systemic JA:

Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.

The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.

Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.

The condition can influence your child’s growth and appetite, making good nutrition a high priority. But the course of the disease, including the number of joints involved, can be highly variable and individual. Only over time will your child’s doctor have a better sense of the challenges she faces.

For the record, Mia has been diagnosed (almost 4 years ago) with Polyarthritis:

Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.

Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.

Dr. Miller asked me why Dr. Lopez had not requested x-rays of JJ's elbows at his initial appointment a few months ago. I told her it was because he forgot. He sent the order in for the knees, but forgot to request the elbows. So, Dr. Miller sent me over to x-ray with JJ to take a look at his elbows. I will call tomorrow to get the results. But, for now, we are to keep JJ on Naproxen (4mls, 2x a day) and follow-up with the ENT in regards to his tonsils.

Tomorrow, we take Mia in for blood work. Never a fun thing...especially with Mia. And, especially since she overheard the doctor mention it and she knows it is coming....

And, on that note.....goodnight!

Words to Live By...

2011-05-31T10:54:00.000-04:00

Psalm 18:39

2011-05-16T07:08:00.000-04:00

"You have armed me well for this fight..."

(Psalm 18:39, MSG)

JJ has been in Naproxen for the last three weeks. He has still been having some wrist and elbow pain, but the knee pain has lessened - no more "night screams" from pain. However, the medicine has been making him extremely tired.

JJ is my early riser. He is up when the sun is up (sometimes, he beats the sun) and the birds are chirping away. But, since he started the medicine, he has gone from waking up at 5:30/6:00 a.m. to waking up at close to 9:00 a.m. And then, there are the naps - he started taking 3.5 hour naps in the afternoon. That is a lot of sleep for a boy his age.

So, after week three of being on the meds, I emailed his rheumatologist last week and let him know what was going on and asked if this was normal for him to be so lethargic and tired on Naproxen. He said, "No, it is not normal….., so we might have to consider to switch the Naproxen to another anti-inflammatory agent, particularly if he started complaining of left wrist pain. I would suggest stopping the Naproxen over the weekend, keeping a diary of his pain, and if these are worse, making an appointment to see us next week."

So, I stopeed the medicine last Wednesday night (5/11) and started monitoring his pain. As each day went by, he got a little worse, waking up with more wrist, elbow pain and knee pain (primarily the left side, but occasionally complaining of pain on the right, too). We kept him off the medicine...until last night.

(5/16) JJ woke up yesterday morning with more wrist pain and complaining his hand hurt. At breakfast, he barely made it through half a piece of toast when he said he was not hungry (this boy LOVES breakfast...so I knew something was up). After church, I went to pick him up at his class and the teachers told me he was very tired and asking to be held and rocked. What??? My son? My very active three-year-old boy??

He went to bed last night around his normal time (7:00 p.m.) fell right to sleep. At 9:00 p.m., we heard him screaming in his room. So, my husband and I went down there and tried to calm him down so we could figure out what was wrong. He was screaming because of the pain in his knees. We immediately prayed over him and then tried to get him to calm down. When we knew he was not going to stop and that the pain was really bad, I looked at my husband and said, "Go get the Naproxen."

We gave him his normal dose (5 mls) and heated up the rice sock to put on his knees, but that did not fix it. He continued to scream and cry. So, we did the next thing we knew to do....put him in a warm bath. Before he got into the tub, I asked him to walk for me and that just made things worse because he couldn't walk because of the pain.

The bath seemed to help and, eventually, we were able to calm him down and get him back into bed.

I will be paging the rheumatologist on call today (Dr. Miller) to see what they suggest. Obviously, he needs the NSAIDS, but is Naproxen the right one? It does help with the pain, but it greatly reduces his level of activity and makes him very lethargic.

I will keep you posted on what they decide.

"…for I will contend with him who contends with you and I will give safety to JONATHAN and ease him."

(Isaiah 49:25)

May is Arthritis Awareness Month!

2011-05-16T05:54:00.000-04:00

Did you know...

- There are more children with Juvenile Arthritis than those with diabetes, sickle cell anemia, and muscular dystrophy...all of which are more discussed in the media. JA is in the top 4 childhood diseases with cancer, allergies and asthma, and diabeties. And yet there is a huge shortage of pediatric rheumatologists and 1/3 of kids live 50 miles from a doc and 1 in 5 travel more than 100 mi to see doc. (Source: Raising a Child with Arthritis)

Good Morning!

2011-04-28T06:00:00.005-04:00

There is a light
It burns brighter than the sun
He steals the night
And casts no shadow
There is hope
Should oceans rise and mountains fall
He never fails

So take heart
Let His love lead us through the night
Hold on to hope
And take courage again

In death by love
The fallen world was overcome
He wears the scars of our freedom
In His Name
All our fears are swept away
He never fails

All our troubles
And all our tears
God our hope
He has overcome

All our failure
And all our fear
God our love
He has overcome
All our heartache
And all our pain
God our healer
He has overcome

All our burdens
And all our shame
God our freedom
He has overcome

All our troubles
And all our tears
God our hope
He has overcome

All our failures
And all our fear
God our love
He has overcome

God our justice
God our grace
God our freedom
He has overcome

God our refuge
God our strength
GOD IS WITH US!
HE HAS OVERCOME!!!

Our Confession Over Jonathan

2011-04-27T17:42:00.001-04:00

Just as we confess over Mia...

Jonathan Mark, III

“Our Warlike Gift From God”

Our Confessions for Jonathan:

“He's your bodyguard, shielding every bone;

not even a finger gets broken.”

Psalm 34:20

“Your body will glow with health,

your very bones will vibrate with life!”

Proverbs 3:8 (Msg.)

“It shall be health to your nerves and sinews,

and marrow and moistening to your bones.”

Proverbs 3:8 (Amp.)

“This is what the Sovereign Lord says to these bones:

‘I will make breath [a] enter you, and you will come to life’.”

Ezekiel 37:5 (New International Version)

“’But I will restore you to health and heal your wounds,’ declares the Lord…”

Jeremiah 30:17 (NIV)

“For He has fortified your gates against all enemies and blessed your children.”

Psalm 147:13

He who began a good work in JONATHAN will continue until the day of Jesus Christ – developing that good work and perfecting and bringing it to FULL completion in JONATHAN’s body.

Philippians 1:6

You have given JONATHAN abundant life. As your Word is spoken, life flows into

EVERY JOINT, TISSUE AND BONE of JONATHAN's body bringing healing and health.

John 10:10

Through Your Word, You have imparted life to JONATHAN.

That life restores his body with every breath he breathes.

John 6:63

He sent His Word and healed JONATHAN and delivered him from all destruction.

Psalm 107:20

…Himself took JONATHAN's infirmities and bore his sickness.

Matthew 8:17

…by His stripes, JONATHAN was healed.

Isaiah 53:5

…for I will contend with him who contends with you and I will give safety to JONATHAN and ease him.

Isaiah 49:25

I proclaim healing over JONATHAN MARK DEL TURCO, III. By Jesus’ stripes he was healed. The healing, life-giving, disease-destroying power of God is working in his body. It drives out all manner of sickness and disease. He is full of life, health, strength, and vitality. He is healed, healthy and whole from the top of his head to the soles of his feet. Every JOINT, TISSUE AND BONE in her body operates and functions the way God created it, with no disease or malfunctions. Every system in his body operates and functions with supernatural efficiency. Jesus, Himself, bore all sickness and disease; therefore, sickness and disease are not allowed to exist in JONATHAN’s body.

He is free from juvenile rheumatoid arthritis.

The divine life of God flows through JONATHAN, quickening and making alive his mortal body. He is free from pain, discomfort, distress, and all symptoms of sickness. God’s Word is medicine to his flesh. We are not moved by how he feels, how he walks, or any negative reports because we believe God’s Word and His Word says
JONATHAN MARK DEL TURCO is healed! He is healed, healthy and whole in Jesus’ name.

Two Kids. SAME Diagnosis.

2011-04-27T10:46:00.000-04:00

"Are you sure??"
(Deep breaths)

"Two kids? BOTH with arthritis?"

(Deep breaths)

"How can this be? How did this happen to BOTH of my babies?"

(Deep breaths)

We took JJ in to see Mia's rheumatologist yesterday afternoon and, after he examined him and checked the ultrasound results, he confirmed that JJ has juvenile rheumatoid arthritis.

I am in shock. Complete shock. And, for the second time in the last four years, time stood still for me as I listened to the doctor's report...

Your heart breaks when the nurse holds up a piece of paper with a series of smiley faces to sad faces (series of 1-10) on it and asks your child, "When you are in pain in your knee, which face are you?" And, when your child immediately points to the saddest face (10) on the page you feel just awful. No child should have pain in their body and be that sad. No child should get an old person's disease. No child should be diagnosed with arthritis at 3 (almost 4) years old.

Dr. Lopez took a look at his joints and could see what the PT saw last week - an enlarged left knee. I did not tell him what Mary (PT) saw because I wanted to see if he saw the same thing. He did. He also thought the right knee had some fluid on it, but the ultrasound showed that the fluid was all on the left. When he raised JJ's left hand up to touch his left shoulder, JJ yelled and quickly pulled his arm away. So, he asked him if that bothered him and JJ said, "Yes!" He tested the right arm and did the same thing - right hand to right shoulder. No pain on the right. Just pain on the left. So, he checked the left again and JJ had the same response (this time with a bit of anger because he did not understand why the doctor kept hurting him.) The doctor then apologized and told him he would not do that again.

"So, what is the plan? What do we do to alleviate the pain?"
(more deep breaths)

Dr. Lopez is starting him on Naproxen (5mls, 2x a day). He also wants him to get his eyes checked for uveitis. He sent JJ to the lab for blood work to check to see if he is ANA positive and to check to see if he has the HLA-B27 antigen in his body. He wants him to hold off on PT for now and wants to see him in four weeks.

He did say that while it is possible to have more than one child in a family with arthritis, it is rare. There are nearly 300,000 children in the United States have some sort of arthritis. A study done in 2002 showed that of those 300,00 children, only 300 of them are siblings with arthritis. He also told me that at some point he wants us to have James tested, as well.

So, we are researching, digging deep and looking into how this could have happened. It is not so much as "How did they both get arthritis?" as it is "Why are both of their immune systems compromised??" JRA is an autoimmune disorder. We have to remember this. I have to remember this. There is something deeper going on than what we see on the outside. The inflamed joints are a result of the immune system attacking itself.

Time to go back to the beginning and look at everything...with both kids. Time to pray and pray hard! Time to ask God again, "Lord, show me what it is! All hidden things revealed!" Time to give extra hugs and extra kisses. Time for extra understanding when they are miserable and crabby because it might be something more than just "being moody." Time to fight, once again.

In other news...better news...

Mia got a GOOD report yesterday. This is the second time since her initial diagnosis that Dr. Lopez has said, "I don't see any arthritis in her body." He wants her to continue taking Indocin (3mls, 2x a day) for the next three months and then he wants her to come back in to see how she is doing. If all remains the same, we we attempt to wean her off of meds again. This will be our second attempt at getting her off of meds.

He said he does want her to start back up with PT, though. Because the arthritis' damage to her joints, she now needs to have those joints and muscles around the joints strengthened. The good news is our insurance company JUST sent me in letter in the mail two days ago saying they will cover her again. YES!!

Diet decisions:
We are putting both kids on a GF, DF diet. Mia already eats that way, but we have let a few things slide here and there because she has been doing so well. But, right now is not the time to slip up with anything. We will be slowly putting JJ onto the diet, as well. We saw immediate results with Mia after her initial diagnosis when she was 22 months old - within a month her sed rate dropped from 60 to below 20. And, both kids will be taking cod liver oil (1 tsp, 1x a day) to help reduce inflammation in the body and lubricate the joints to protect them.

I will be back to updating this blog more often as it is one of the only ways for me to "dump" everything out of my head and "journal" it to look back on when things occurred. I ask that you pray and agree with us for our children and for our family for complete health and wholeness to their bodies. God perfects those things that concern us, especially when it concerns our children.

Thank you so much to everyone for your love and prayers yesterday. We love each and every one of you and thank God for you! And, a huge "thank you" to all of my arthritis friends who were so very encouraging yesterday with your prayers and support and kind words. We are all in this together. And, I am holding tightly onto hope that, one day, will WILL get to the bottom of this!

A Trip For Two.

2011-04-26T11:36:00.000-04:00

Today, I ask for extra prayers.

Today, I ask that questions be answered.

Today, I ask that concerns be put to rest.

Today, I ask for favor with doctors.

Today, I ask for strength.

Today, I ask that my mother's heart be flooded with peace.

Today, I stand strong on God's promise for my children - "They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)

Today, we take not just one child to see the rheumatologist, but two.

For the last eight or nine months, our middle child, Jonathan, has been complaining of joint pain. I'd be lying if I said my heart does not sink just a little at the thought of what we might be dealing with here. But, I am trying my hardest to not "go there" and remain in a place of hope and peace.

I'd like to say it is something he picked up on from hearing his sister complaining about her joint pain. But, I honestly don't think that is it because Mia has been pain-free and her inflammation has been drastically reduced since she switched from taking ibuprofen to Indocin in August 2010. Thank God!

I'd like to believe it is growing pains, but when a child not only goes to bed with joint pain and then wakes up first thing in the morning (or all throughout the night) with joint pain, I can't help but wonder if we are dealing with something else here.

It started with his left knee (same as Mia). Pain that would wake up up in the middle of the night with tears and screams. Pain that would prevent him from walking from his bed to the door. So, I would do what I knew to do...pray, heat up the rice sock and put it on his knee and, if it was really bad, give him some ibuprofen.

He does "W sit" and plays very hard on his knees, so we thought that might be the reason. But, we have really been watching him with it and correcting him if he is sitting the wrong way and even then days where he has not been rough on his knees he still has the episode of joint pain at night.

We had blood work done end of March at the pedi's office and everything came back normal. However, the PT and rheumatologist said they look at symptoms first and blood work is always second. I've been told by other JRA moms that their kids blood work always comes back normal, but their kids still have painfully swollen joints.

Then, on the morning of April 2, he woke up crying and complaining of pain in his toes. Specifically, his big toe on his right foot (same as Mia). We were already heading in that day to have x-rays done of his knees, so when I got there I had them add toes and feet to the list.

Two weeks after that, he woke up complaining of pain in his right elbow (same as Mia). Mia was already scheduled to see her PT that week (I always take her in to see Mary to get her opinion before a rheumy appt.). So, I brought JJ with me and asked Mary to take a peek. She confirmed that his left knee is bigger than his right - 1cm bigger around.

Is it just sheer coincidence that he and Mia have pain in all the same joints (Mia also has ankle pain)? So weird.

So, here we go. Deep breaths today.

Hyperacusis? Nope! Tonsillitis? Possibly...

2011-04-26T10:41:00.000-04:00

I took Mia to see my baby's ENT yesterday for another opinion on her hearing sensitivity issues. I told him what the other doctor quickly diagnosed her with near the end of our appointment with her and he did not agree that she has hyperacusis. He said that this is very common in children around age four to have a "severe hypersensitivity" to sound. He believes that is what she has....and she should outgrow it by age six. Yay! We have been seeing this doctor for the past year now for my youngest son (who we got a GOOD report about yesterday. James is outgrowing his laryngomalacia and will not be needing surgery!!) and totally trust his opinion.

One unexpected issue that came up was he took a peek in her mouth and said her tonsils are the size of two huge walnuts and he thinks she needs to have them taken out. He asked me:

"Does she sleep with her mouth open or closed?"
"Closed."

"Does she snore?"
"Yes."

"Does she choke on certain food and, if so, which ones?"
"She has in the past...and just two days ago she choked on carrots. Usually, it happens with raw fruits and veggies."

"Have you ever seen her stop breathing at night?"
"I actually have, but figured it was just a fluke thing."

He said these things are all a result of enlarged tonsils. She is a slow eater because she is working harder to chew everything up so it can pass between those two large walnuts in the back of her throat. Poor girl! And, here I am trying to get her to hurry up and eat not knowing there is a reason why she is eating soooo sloooow.

He went on to tell me when she is asleep, everything in that area relaxes and those tonsils get closer to one another, preventing air from getting through. Her brain then send off a trigger to her body saying, "WAKE UP NOW! BREATHE!" and she quickly starts to breath again. This prevents her from ever entering into that deep sleep that her body needs.

So, the ENT believes they need to come out. But, for now, I am supposed to keep an eye on her at night for the next two weeks. He wants me to go in and sit in her room while she is sleeping for a few minutes and just listen to her breathing. And, then a decision will be made in two weeks if those big walnuts need to come out or not.

IMPORTANT: Should the tonsils need to come out, she will need to stop her JRA med (Indocin) four days before the procedure and for two weeks afterwards. Cod liver oil will need to be stopped, as well.

Which is something we will be bringing up today when we make the trek into Boston for an appointment with her rheumatologist....

Hyperacusis??

2011-03-31T07:29:00.000-04:00

A couple of weeks ago, I finally took Mia in for a hearing test/screening at Children's Hospital. Five minutes in to the appointment I knew it was a mistake - the doctor had never heard of JRA or how it can affect one's hearing. When I mentioned Mia's diagnosis the doctor responded with, "Oh my! What is that??"

Great.

After bringing her up-to-speed and giving her a brief rundown on the ins-and-outs of JRA, she did a screening on Mia's ears, said she was "normal" and everything was fine. I was mad. I knew there was something else going on with her ears and has been for a long time. Mia's ears are so sensitive that there are times when she is even bothered by going from inside of our house to the outside. The sound change immediately sends her hands up over her ears. There have been times where a nature program has been on the television in the other room and the sound of a bee "buzzing" on the television has totally bothered her ears....and she was in a totally different room!

I mentioned to her what another JRA mom had told me - that there are three bones inside your ear and sometimes the arthritis can affect those bones which, in turn, affects one's hearing. She said she had never heard of this, but that it was "very interesting" and she would "look it up."

Before leaving the office completely frustrated, the doctor told me to hold on a second. She returned 10 minutes later and handed me a piece of paper and said my daughter is "hyperacusis*." When I asked her what it meant she just said very slowly, "HYPER-A-CU-SIS!" (Like I am an idiot). I looked at her and ever-so-politely said, "AND THAT MEANS???" That was when she referred me to several websites listed on the printout and told me I could get more information there. Um, sorry. Aren't you the hearing specialist?? Shouldn't you know what this means and be able to give me a quick definition...or a few helpful tips on what I should do? Trust me, we've seen enough doctor's with Mia that I can easily tell which ones are legit and which ones are full of crap.

Bottom line: While just maybe this might be what Mia has, don't you dare try to put a label on my daughter and "diagnosis" her just for the sake of giving her ailment a name...and then not tell me what the disorder is!

The next day, I made an appointment for her to be seen by my youngest son's ENT at the end of April to get a second opinion. In hindsight, we probably should have gone to him in the first place.

*For more information on "hyperacusis" you are going to have to "google it." That's what I had to do. Bah!

Jenna's Story

2011-03-21T23:05:00.000-04:00

My friend, Amy, just created this moving video to tell the story of her daughter Jenna's journey with JRA. Please take a moment to watch it. My heart breaks for the parents who have children who deal with this devastating illness day after day after day. Simple activities that come so easy for some children are so much harder for our kids because of this disease. JRA is NOT your grandma's arthritis!

Sweet, beautiful Jenna....our family is praying for you!

CLEAR!

2011-02-25T11:24:00.000-05:00

Mia just returned from another visit to MERSI where Dr. Hinkle checked her eyes once again for any signs of uveitis. We are VERY happy to report that her eyes are CLEAR! Or, as Dr. Hinkle said, "They are crystal clear."

There was some concern because in the last month Mia has been complaining of seeing "floaters" or "spots." So, when we mentioned this to the doctor he checked her eyes with a scope using a more detailed lens to get a good look all the way to the back of her eyes. He said there is nothing - no cells, no inflammation. Crystal clear.

God is good! :)

Hip Pain

2011-02-18T07:50:00.000-05:00

This is a first for Mia. She has never complained of hip pain before...until now. She came home the other night from her cousins' house and kept saying her right hip hurt. So, we did what we knew to do...meds (Indocin), oil (Carlon's Norwegian Cod Liver Oil), heated up her trusty rice sock and put it on her hip, and we prayed (hard). I was hoping this new pain spot was just a result of a very active day and that she'd wake up in the morning feeling great. But, when she woke up it was still there (stupid disease!).

So, I thought, "Let's give it a day or so and see if it goes away." Well, it hasn't. She is still complaining that her right hip hurts.

I'll be putting a call in to her rheumy today to see what he wants to do. Praying he doesn't want to increase her meds again because I don't like having a crabby zombie for a daughter. :(

Seeing Spots and Hearing Issues

2011-02-10T23:56:00.005-05:00

Mia has been complaining of "seeing spots" lately. Thought I'd post about it in the hopes that any of my Arthritis Friends could shed some light on the situation. She goes in next Friday for her every-three-month appointment with the eye doctor to check for uveitis. It is really hard to tell. A few months ago she was diagnosed with herpes simplex virus. So, we aren't sure if it is flaring again...or if it is something else (uveitis). We hope it isn't "something else."

As I've mentioned in the past, the purpose of this blog is a personal journal for myself...to keep track of everything JRA-related going on in Mia's life. As far has her arthritis goes, she has been doing great lately. We are taking a break from physical therapy again (this is the second time we've been able to do this) and her rheumatologist reduced her meds (3mls of Indocin) from three times a day to twice a day. This helps to reduce the amount of grogginess/sleepiness she was experiencing.

She also goes in this Tuesday to finally have her hearing checked. Ever since Mia's initial diagnosis, she's dealt with extreme sensitivity to sound. We've dealt with so many other JRA-related issues (leg braces, MRI's, meds, painful joints, eye appointments, PT and OT, etc.) that the hearing issues kind of took a backseat to everything else. Normal sounds (i.e. going from inside of the house to the outside, fireworks, indoor waterfall, crowds, etc.) that don't both a normal child really bother her. I recently brought it up to some my Arthritis Friends and another JRA mom mentioned to me, "There are 3 small bones in the ear that vibrate in response to sound waves. These bones have articulating surfaces and can be affected by arthritis. It is rare, but so is each and every one of our children." Very interesting! Definitely something to mention to the doctor next week when we go in for the appointment.

So, that is where we are at in the journey. Taking another "arthritis break" for the second time in three years (hopefully longer...hopefully permanent!), keeping up with the eye appointments and checking on these bothersome "floaters," and getting Mia's hearing checked to try to figure out what is hurting/annoying her so bad.

Will keep you posted!

Three Years: The Fight Thus Far...

2010-11-15T18:00:00.001-05:00

I know. It has been a while since I've blogged about what is going on with Mia. I am way overdue for an update...and, this is a long one, but a necessary one. This is my "journal" to keep track of where we are at in our battle against JRA. So, brace yourselves as I bring everyone up to speed on Mia's fight....

But first, let's back up a bit.

Spring 2009 - FLARE!
Mia had a major flare. The worst one yet. And, it was awful! She needed to have the fluid on her left knee and right elbow drained and injected with steroids. We saw immediate results afterwards and the inflammation when down very quickly.

July 2009 - Is It Lyme?
After much research, and a very looooong conversation with Mia's rheumatologist, we looked into treating Mia for Lyme Disease. We have several family members and friends who were diagnosed with Lyme, as well. I have not publicly mentioned this until now because we knew there was a lot of controversy regarding "Is it Lyme or JRA?" BUT, when you have a child who you have to carry all over the house because they can not walk because their joints are swollen, inflamed and their arms or legs won't straighten out, you will do whatever it takes to make the pain stop. The way we saw it was if anything we'd be ruling out Lyme Disease. If it turned out to be Lyme then great, it could be treated. And, this would be over. But, if it wasn't Lyme then we'd know for sure and we could write it off the list and could move on.

Mia took Lyme meds (Biaxin and Plaquenil) for four months (July - October 2009). Her doctor, a Lyme specialist told us, "If it is Lyme, she will have a flare in her joints within 2-3 months from now." Well, that did not happen. Instead, she had a flare when her rheumatologist predicted she would have a flare - about one year after the steroid treatments. So, now we know (and now you know). We can rule out Lyme. Regrets? Nope...not any. Moving on..

October 2009 - Taking a JRA Break
We were able to stop physical therapy and, basically, put JRA on the "backburner" for a while. Mia's joints looked excellent and there was no reason for her to continue her weekly PT sessions. We were thrilled. It was nice to be "normal" and not think about joints, meds, physical therapy, and flares for a while.

Spring 2010 - A Mild Flare...But A Flare Nonetheless
Mia's joints started to flare up again. We started physical therapy up again to help reduce the inflammation. At this time, Mia was still on ibuprofen. In June, her youngest brother was born (yay!) and by August the flare continued. Her father took her for a follow-up appointment to see Dr. Lopez and that is when he switched her from ibuprofen to Indocin. He put her on it for three weeks saying, "If this new med does not reduce the swelling on her joints, then we will drain and inject them again." But, the Indocin worked. And, despite the exhausting side effects this new med has on her (moodiness, iritability, sleepiness - she takes a 2.5 hr nap every day), it has helped to reduce the swelling and fluid on her joints.

Fall 2010 - "Making Progress"
I would like to entitle as, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 1." And, I am sure I am not the only parent out there with similar frustrations. Our insurance company sent a letter to Mia's PT, and to us, saying Mia was no longer "making progress" and they will no longer cover physical therapy. Wonderful. Isn't "making progress" par for the course?? This is how it has always been: she has a flare and then she "makes progress!!' Through physical therapy, meds and prayer she "makes progress," gets better and then we wait to see what happens. She is constantly "making progress!!!." I'd love to know who made this call. Obviously, it was someone who does not have a clue about arthritis or autoimmune diseases. Bah!

Lucky for us, a grant was offered for Mia to continue PT. She is the first patient to benefit from this grant. If it wasn't for this grant, physical therapy would not be possible right now. God provides!!

October 2010 -Mia's Three Year Anniversary Since Her Initial Diagnosis and...Scoliosis
Yes. Scoliosis. For those "non JRA-ers" out there, let me explain. When a joint is inflamed (in Mia's case, her left knee), it causes increased blood supply to the bone growth plates situated near the joints. This causes that limb (or digit, like Mia's big toe on her right foot that started to become enlarged when she was 15 months old) to grow faster than the other limb. For a long time, Mia's left leg has been 2cm longer than the right. It was never this bad in the beginning, but over time has gotten longer...which, in turn, affects her hips, back, spine, shoulders, etc. Right now, her spine is leaning to the right and her shoulder blade looks sunken in. When she runs, she swings her left leg out and around. And, she skips to hide it....or to hide that she is limping. It is definitely not something that should be ignored.

So. How do you correct something like this? Simple. Put a lift in her right shoe and "voila" she straightens right up. However, even though this is the second time since she was diagnosed that her PT has highly recommended a lift, this is also the second time her rheumatologist has said she does not need it.

And, here is where our frustration lies.

First off, her rheumatologist claims the left leg has to be 2.8cm to qualify for a lift. The PT says, in so many words, "That is a load of crap." Neither she nor her colleagues have ever heard of such a thing (keep in mind Mia is the second patient of hers that our rheumy has denied a lift to; there was another little girl he said the same thing about a couple of years ago and the parents met with a pediatric orthopedist anyways and had the lift put in). The rheumy says, "What happens when she gets used to the lift?" The PT says, "What is worse? For her to get used to a lift OR for her to get used to the scoliosis and used to a shoulder that is up to high and a back that is not correctly aligned and used to swinging her left leg out when she walks?"

(I agree with the therapist)

We did request for her to have another scanogram (bone scan) done to accurately measure the legs to see how much longer the one really is from the other. But, when I asked the rheumy he said that he only likes to do scanograms every two years because every time we have it done it puts radiation into her body. The last scanogram was done in April 2009 so she is up for another one in April 2011. So, the only option he is giving us at this point is to wait, which I refuse to do.

With that said, we plan to see a pediatric orthopedist in Boston to get a second opinion. It is the smart thing to do.

Moving on to her...

Eyes
What a rollercoaster we have been through recently. Mia has gotten her eyes check every three month since she was a year-and-a-half old for uveitis. We never miss an appointment. It is that important to have her checked. Uveitis can pop up out of no where. It is serious and not something to mess with. That is why her doctors are very proactive when it pertains to anything that happens with her eyes. Thank God for excellent eye doctors! Up until now, Mia's eyes have been clear with no signs of uveitis or any other eye ailments. Until...

Saturday, October 23 Mia came back from ballet class complaining that her left eye was bothering her. I kept an eye on it throughout the day. After she took a shower that evening, she said to me, "Mommy, my left eye won't stop running!" Around midnight, I had to go in to her room because she was crying and the left eye was all goopy and crusty. I immediately thought, "Great. Conjunctivitis." Mia had not been around anyone with conjunctivitis, that I was aware of. So, Sunday morning we started erythromicin drops and immediately the goopiness stopped. I remember thinking, "How strange that it cleared up so fast. That's a first!"

And then, on Monday this nasty, irritated blister appeared on the inside of her left eye and it got worse and worse.

By Wednesday, it was horrible. So, I texted one of my JRA mom friends, Joanne (thank God for other JRA parents out there who understand!) and she suggested I email the pictures immediately to Mia's uveitis doctor, Dr. Foster. He responded immediately and said she needed to be seen.

My husband took her in the next day to have her eyes checked and was told Mia has....Herpes Simplex Virus in her eye. Wonderful. Like she doesn't have enough that she deals with already. Dr. Foster told my husband it was a good thing we brought her in because left untreated the damage to the eye could have been very serious.

They did blood work to find out if the virus was in her body. In the meantime, Dr. Foster prescribed Zirgan. And, this is the part I'd like to entitle, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 2." Because this drug is new to the market and has not been reviewed yet, they wanted to charge us $400 for it! I was on the phone all day with the pharmacy, insurance company and the doctor's office. Finally, a nurse called me back saying she spoke with the insurance company and they would cover it and it would only cost us $50. That is so much better than $400.

November 2010 - Eye Follow-up
She went back in for a follow-up appointment for her eye one week later. They said she does NOT have HSV in her bloodstream. Thank God! However, we need to continue the drops for her eye until they are gone and follow up one more time this Friday. So far, there has been no inflammation in her eyes...no cells, no uveitis. But, they are telling us this does not mean it could not stir things up in her eye. So, we are back on track with our every-three-month schedule.

Well, folks. That's where we are at with Mia's JRA journey - weekly PT every Thursday, Indocin 3 times a day and she still does 1 tsp of cod liver oil to keep the inflammation down in her body. We have not had to put her on steroids because, so far, we have been able to control the inflammation in her body with NSAIDS. She is still on a GF, DF diet. We have allowed eggs back in...because she loves them and they don't seem to affect her. This fall, her doctor and therapist approved two extracurricular activities, which also benefit and strengthen her joints: ballet and swimming. She does both weekly and really enjoys them both! And, we enjoy seeing her pain-free and happy!

In The Meantime...

We will continue to stand and believe for Mia's complete and total healing in her body. And, we will continue to pray for the other children who also have this horrible autoimmune disease. We pray for peace for their parents in making the hard, heart-breaking decisions concerning their child's health. We pray for strength for them and their child(ren) with every injection they have to give their son/daughter so they, too, can be a "normal kid." And, we pray for an answer to put a stop to this awful, puzzling, bone-destroying disease.

“He's your bodyguard, shielding every bone; not even a finger gets broken.” Psalm 34:20

Rheumatologist Visit

2010-06-08T20:21:00.002-04:00

Mia had an appointment with Dr. Lopez today. Jay took her because I am on bed rest still....and I am glad I didn't go because they waited two-and-a-half hours to see the doctor! Crazy!

Dr. Lopez looked at Mia's joints and said there is definitely fluid on her knee again. He wants her to continue taking the ibuprofen (2 tsp, 3x a day) for the next four weeks and continue going to PT to try to get that swelling down. If the swelling does not go down four weeks from now then he wants to drain the knee and inject it with steroids again...just like they did last spring.

When Jay shared the doctor's report with me, at first I was bummed. But, then I remembered how well her knee responded to last year's drain and injection. And, the timing is good, too, because she will be officially out of school next Thursday and will have the summer to get this under control before she goes back to school in the fall. She really, really, REALLY wants to take ballet again in the fall. So, we've got to get this knee back to where it is supposed to be.

The most interesting part of the visit was how Dr. Lopez asked my husband to fill out a survey that they are doing of all their patients to find out if diet has anything to do with their arthritis. HELLO!!! I've been saying that since she was 22 months old!! He also mentioned to my husband they are looking into the connection between Vitamin D and inflammation. Again, I've been saying this since day one! It is the reason why we immediately switched Mia over to rice milk after she was diagnosed, despite her rheumy's request to keep her on whole milk. Amazing.

So, we will see how she is doing a month from now. Who knows? Maybe the ibuprofen combined with some PT, getting back on the diet again and the daily teaspoon of cod liver oil will help us like it did the first month of this journey. But, even if it doesn't, I feel good about getting her knee injected and drained. The main thing is that fluid just can NOT sit there on her knee. That is what does the most damage to her joints.

Well, I'll keep ya posted! They did blood work today, too. I am curious to find out what her sed rate is at right now. I'll call in a day or so to find out...

First PT Session Since October 2009

2010-05-29T19:32:00.004-04:00

Because her knee was so swollen and because we know better than to waste any time when it comes to JRA, I immediately made an appointment for Mia to meet with Mary, her PT, this past Thursday for a physical therapy session. Here' where we're at:

- Her left knee has fluid on it again and is bent 30 degrees again.
- Her right elbow is not swollen (very unusual).
- Her right ankle is swollen.
- She has several swollen toes.

We have an appointment to see Dr. Lopez on June 8th. In the meantime, we are going to try to get in two or three more therapy sessions with Mary to try to get the swelling down. Mary does not want her jumping, riding her bike or doing anything that would increase the swelling. Also, she wants her icing her knee twice a day and agreed with Dr. Lopez on the amount of medicine he wants her on (2tsp of Motrin, 3x a day). She said it might sound like a lot, but the important thing is to get the swelling down as soon as possible so she doesn't have to go on a stronger steroid, like methotrexate.

She observed Mia during the session and said while she is definitely having a flare, she is still trying to be as active as she was before it. She is still running, bending, squatting, climbing. However, it is not normal. Her left leg is now 2cm longer than her right. Basically, the combination of her left leg being longer and the swelling in her knee is causing her to not walk straight....which can also damage her joints.

So, that is the latest. We are back on the JRA rollercoaster....praying it will be a very short ride this time!

We're Back.

2010-05-26T20:50:00.006-04:00

Not happy to be back...but, we are back.

It has been such a loooong time since I've posted because, quite honestly, Mia's joints have been perfect. We have been busy enjoying life for the first time since she was diagnosed with juvenile rheumatoid arthritis at 22 months old. And, oh man, how we enjoyed putting JRA up on the top shelf, hoping to never face it again.

Until today.... when Mia woke up with a swollen knee and we were forced to take JRA back off the shelf and assess what is going on with our little girl.

Mia's left knee and left ankle are starting to swell. It has been a year since she had the fluid drained off of her left knee and right elbow and then had the joints injected with steroids. The doctor told us the steroid injections would last about a year and if she was going to have a flare it would be around this time right now. Well, here we are...one year later.

Granted, the weather plays a huge factor when it comes to arthritic joints. And, it has been in the 90's the last several days and very humid. Also, Mia jumped on a moonbounce yesterday for the very first time at her school's end-of-the-year carnival. So, maybe it was that?

However...

Keeping in mind what the doctor told me a year ago, I have been watching for signs of a flare over the last several weeks. I did notice her swollen ankle about two weeks ago. And now her knee.

So, I did what I know to do. I called her physical therapist, who she hasn't seen since October 2009 because she told us Mia was "perfect" (and she was at the time) and did not need therapy, and I made an appointment to get a session in before seeing the rheumatologist in the hopes that she can help get some of that swelling down. Next, I called her rheumatologist and updated him on what is going on. He wants to see her immediately and start her back up on Motrin (2 tsp, 3x a day - THAT IS A LOT!!!). She has an appointment with him in two weeks.

So...here we go again. She is back on the gluten-free, dairy-free diet (we had been letting her have treats here and there for the last several months. It is kinda hard not to when you have a two-year-old who can eat whatever he wants) and she is back on the Carlson's Norwegian Cod Liver Oil.

Tonight she went to bed complaining of a severe headache. She NEVER gets headaches. We are praying the swelling goes down and she feels much better in the morning. For right now, we are taking things one day at a time. We know what to do (in the physical) and we know how to pray. Summer is right around the corner and Mia is going to have a GREAT summer!!

Totally Delicious GF, DF, EF Pumpkin Muffins

2009-10-18T18:35:00.003-04:00

My thought: There is no reason why a child who is on a special diet shouldn't be able to enjoy delicious fall treats.

My solution: My very own recipe for GF, DF, EF* Pumpkin Muffins!!

Pumpkin Muffins

(makes 24 muffins)

Ingredients:

1 1/4 cups Gluten-free Flour Mix (I prefer Bob's Red Mill)

1/3 cup coconut flour (if you don't have it, you can substitute with GF, DF flour)

1 tsp salt

1 tsp gluten-free baking soda

1 cup sugar

2 eggs (or egg substitute)

1/2 cup coconut oil (melted)

1 15 oz. can pumpkin puree (unseasoned)

1/4 cup maple syrup (Grade B is the healthiest; we like Trader Joe's brand)

1/4 cup water or milk (I use Trader Joe's Vanilla Rice Milk)

1 Tbs cinnamon

Optional:

1/3 cup raisins (soaked in hot water for 5 mins. to soften)

1/2 cup chopped walnuts (reserve some for top of muffins)

Directions:

Preheat oven to 350 degrees. In separate bowl, whisk together all dry ingredients (flour, salt, baking soda).

In separate bowl, beat sugar and eggs together. Add coconut oil. Add pumpkin puree and blend well. Add maple syrup and milk. Add cinnamon, raisins and walnuts. Combine until smooth.

Place muffin liners into two 12-muffin pans and spray insides of the papers with baking spray. Fill liners with batter (approximately 1/4 cup each). Bake for 20-25 mins. Cool on baking rack. Sit back with cup of coffee and watch your little ones devour a very healthy snack!

Happy Fall!!

*gluten-free, dairy-free, egg-free

FDA: Arthritis Drugs Up Kid's Cancer Risks

2009-08-07T08:06:00.001-04:00

FDA: Arthritis Drugs Up Kid's Cancer Risks

Stronger Warning Labels to be Added to Popular Medications, Companies also Required to Inform Patients

We are still here...

2009-07-20T10:34:00.006-04:00

We have not left! We've just been taking a slight break...especially from the last three months of craziness that crept upon us so unexpectedly. We are finally enjoying the summer; spending time together as a family, soaking up the sun and watching our kids grow as fast as weeds. Mia is three-and-a-half years old now and her brother, JJ, will be two this Wednesday. And, they keep us busy, busy!

Mia went to see Dr. Lopez again a few weeks ago. It was a good visit. The inflammation in her joints is completely down again, allowing her to fully enjoy all that summer has to offer (trips to the beach, play dates at the park, running, jumping, dancing, chasing her brother all over the house, etc). Yay! Her rheumy wants us to keep her on the ibuprofen (11.5 mls 3x a day) and zantac (3 mls 2x a day) for the next three months. If she does not have any flares during that time, we can start to wean her off of the medicine. So, we are ALMOST back to where we were at this past December. Almost!!

Dr. Lopez took a look in Mia's eyes again while we were there and said he still sees a spot of inflammation in her eyes...same place as last time. When we took her to Dr. Foster's office back in May, they examined her eyes several times and saw nothing. So, we will take her back again and have them check again.

In other news, we are trying some new treatments for Mia, as well. I will update everyone in a few months...

We hope everyone is enjoying their summer as much as we are enjoying ours!

Injection #2 Complete!

2009-06-05T14:56:00.003-04:00

I intended to post yesterday, but everyone was drained. Completely and utterly drained.

We got to the hospital at 6:30 a.m. (keep in mind I have the most amazing kids who love to sleep late...so this was a stretch for Mia!). When we arrived, the receptionist informed us that there was an "emergency case" right before Mia's scheduled appointment. So, after getting Mia settled in the play room, off to Starbucks I went and indulged myself in my drink of choice - a Grande Toffee Nut Soy Latte, hold the whip - and was ready for the events of the day. Or, so I thought.

Shortly after I returned, with piping hot java in-hand, they took us down to the ER to get Mia ready. Jay and I walked into the room, holding her hand and she stopped dead in her tracks when she saw all these people in "blue costumes" with "blue hats" tromping about in an absolute hurry. It made ME nervous so I can only imagine what was going through her little head.

Our designated nurse walked us over to a "room," which was actually just a curtained-off room with a gurney. After we got Mia into her hospital gown and hospital socks the dreaded wait began. Just imagine trying to keep a three year old happy in a not-so-happy place - it was a challenge! In the meantime, there were a large handful of doctors and anesthesiologists who "popped in" to introduce themselves to us and to Mia. She was schedule to go in around 7:30 a.m. which ended up being closer to 9:00 a.m. Unlike last time where they just put some numbing cream on her hand and then did the IV, this time they put a watermelon-flavored mask on her face and put her to sleep first before doing the IV. And they only allowed one parent to be in the room with her. This time it was me.

So, I got all dressed up in my "space suit" and entered the room with her. I sat there and held her on my lap while they put the mask on her. After several moments of fighting it, she went limp and was out. I think that was the point where I decided I was truly tired of all of this - tired of putting her through everything, tired of being in pain, tired of being on the JRA rollercoaster. I felt really bad for her and kept asking myself all day long, "How the H*LL did this happen to her??? Where did this come from?? Why did it happen to MY baby?" Questions I am sure every JRA mom asks herself. I was just that tired.

They injected a dye into her arm to be able to see exactly where they needed to inject the steroid. They extracted about 3 cc's of fluid from her arm and, per our request, sent it off to the lab to test it for infection/bacteria. The procedure itself went well. Mia woke up and was a bit more emotional than usual. After that, we went home.

We are looking into a few other things right now for Mia and I will post more about those things soon.

Thank you to everyone for your love, prayers, and continued support. We have needed it and appreciate it from the bottom of our hearts. And, a HUGE "thank you" to all the JRA moms out there - I appreciate you more than you know.

Another Injectionand Another Joint Affected

2009-05-26T16:00:00.005-04:00

Remember the Tin Man in the movie The Wizard of Oz? Remember how he stood there, totally stiff in the woods until Dorothy found him and discovered the oil can would "loosen" him up so he could move?

I am starting to feel like Mia is the "Tin Man" and the "oil can" is the steroid injections. I'd venture to say her rheumatologist is "Dorothy," but if you met the man you'd agree with me that, while he is very kind, he is definitely not "Dorothy" whatsoever. :)

Moving on from my pale attempt of making "light" of Mia's current situation (one just has to be able to laugh these days!)...

Another Injection...
We just returned from Boston...again. Dr. Lopez met with us and examined Mia's knee, post-procedure. He was very happy with the results of the knee injection she had done on May 7th. However, after looking at her elbow he decided she does need to have it drained and injected, as well. So, we head back to Boston next Thursday, June 4th for her second "oil can injection"...I mean, steroid injection. ;o) Since this joint is smaller than her knee, after putting her to sleep, they will inject a dye first so they are able to locate exactly where they need to inject the steroid. Since it is a smaller joint, the doctor mentioned there may be some pain for about 48 hours after the procedure. And, after that, she will be dancing around like the Tin Man again...hopefully! :)

Another Joint Affected...
Last week at Mia's PT appointment, Mary noticed that Mia's middle knuckle on top of her hand looked swollen. So, I mentioned this to Dr. Lopez today and after examining her hand, he agreed - she now has a THIRD joint affected. And, since this joint is so tiny, he said they can not inject it.

So, she will stay on the ibuprofen to alleviate the pain in that joint and any pain she may be experiencing in her other joints. We will meet with him four weeks from now for another follow-up appointment.

...for now. :)

PT Update and a Chat With The Doc

2009-05-18T17:32:00.002-04:00

Today's PT session was a challenging one. Mia would barely let Mary touch her arm. She did allow her to put some heat on it, but when it came to massaging it and stretching it, Mia would not let Mary go near it. The session went by fast today, which was a good thing. When we left the house to go to PT, Mia cried the entire way there, begging me to not take her today. I almost didn't.

I spoke with Dr. Lopez today. He agreed with Dr. Natter that I should start looking for the steroid again because he said she will need to have her elbow drained and injected. So, after we take Mia in to see Dr. Lopez next Tuesday, he wants her to also be seen by the pediatric orthopedist to have him/her take a look her elbow and determine when the procedure should be done.

With that said, does anyone out there know where I can find a steroid (Triamcinolone Hexacetonide - Aristospan) that the manufacturer has stopped making?? Emails and comments welcome!

Elbow Injection?

2009-05-17T11:56:00.003-04:00

Mia has been complaining that her elbow hurts. So, I paged the doctor on call - Dr. Natter (he works with Dr. Lopez). He thinks she needs to have it drained and injected (same procedure as her knee). Which means...

I am steroid hunting, again.

This time, the doc told me to contact the FDA directly and see where I can get it. He said since it takes so long to get it that I should start looking now since that is the direction she is heading. Great. Let the hunt begin.

He also mentioned that it sounds like to him that Mia has psoriatic arthritis (????) and told us to mention this to Dr. Lopez. Interesting. So, we'll mention it to her doc and see what he says. Dr. Natter told me that they tend to be a bit more aggressive with meds if it is psoriatic arthritis, meaning they would definitely do the elbow draining and injection and start her on immediately start her on methotrexate.

Our appointment with Dr. Lopez is on May 26 and he will be the one to ultimately decide if Mia need to have the elbow procedure done. If she does, the pediatric orthopedic department will do the procedure - not rheumatology.

In other news, Mia's stomach has really been hurting from the ibuprofen. The doctor recommended I take her off of the ibuprofen for now until her stomach calms down. Great...and what about her elbow then?? Take her off and no stomach pain, but elbow and possible knee pain. Or leave her on it and no joint pain, but continued stomach pain. UGH! I didn't agree with him. I don't want to take any chances here. Can you blame me?? So, he wrote me a prescrip for Zantac. She was on Zantac last July when she was experiencing the same stomach/G.I. issues. It seemed to work well and she had less irritation and stomach cramping when she took the two together. So, we'll try that for now and see what Dr. Lopez has to say next Tuesday. For now, we have been wrapping her arm with an ace bandage for about 30 mins. several times throughout the day. She said it feels better when it is wrapped.

Up on deck for this week:
PT - Monday and Thursday.

PT Update and "New" Knee Pics

2009-05-13T07:20:00.012-04:00

Mia went to see Mary (PT) on Monday. JJ tagged along because my husband was out of town and I couldn't find a sitter. I gave Mary a "heads up" that The Screamer would be joining us today. She didn't mind at all. We *heart* Mary!

Being this was the first time Mary has seen Mia's knee since the procedure, she was quite impressed! She did some warm-up exercises and massage to her joints and then took some measurements...

Left knee:

Before procedure: -30 degrees

After procedure: -8 degrees (YAY!!)

Right elbow:

Before procedure: -15 degrees

After procedure: -10 degrees

Spine and hips:

no signs of JRA or scoliosis

Leg length:

left is still 2cm longer than right

We went to the park on Saturday because Mia seemed to be feeling better. It was the first time she has been outside to play in weeks! We were so thrilled as we watched her go up and down the slide. However, she may have overdone it a bit because the next morning she was stiff and limping again. So, now we know what is too much for her. Everything in moderation. :)

As promised, here are a few pictures of Mia's "new" knee. You can see her "old" knee here.

side view:
YAY!! Much straighter than before!

We can see her kneecap again!

front view:
She is bearing her weight
on the left side again

The injection really helped! Mary thinks that with some PT twice a week she will be able to get Mia back down to 0 again.

As for her elbow, it really needs some help. The muscles around the joint are starting to harden, making her forearm look larger than it should look. Mia would barely let Mary touch it on Monday. She told Mary it was "ouching" her. So, we are going to focus on that now...wrapping at nap time, icing the joint, extra PT at home, etc.

We go back to see Dr. Lopez in a about two weeks and we will see what he thinks the next step should be for Mia - another leg brace? brace for elbow? a "lift" inserted into right shoe to balance her out? We will see. :)

Oh, wait! One more thing...

Last week was a long week for Mia...physical therapy sessions, eye appointments and finally her knee procedure. So, on Friday, with her doctor's permission, Mia went with her cousin, Isabella, to see Dora The Explorer Live at the Boston Opera House. Mia was so happy to finally have a FUN night out! "Thank you" to Grammy and Papa for treating all of us. :)

So happy to finally be out of the house
and doing something FUN!

left to right: Lori (SIL), Isabella (niece),
Mia, and me (sporting Mia's Charlie and Lola backpack!)

We Are Home!

2009-05-07T15:01:00.002-04:00

Everything went well with Mia's knee procedure. She did an amazing job! She wasn't too thrilled with the IV and cried and cried for her little brother, JJ, but after it was in she wanted to know if she could take it home with her. I think she had big plans to add it to her pretend doctor kit. :)

The procedure was fast and smooth and before you knew it we were back in the room with her. The fluid was clear, so Dr. Sgarlat was able to extract about a teaspoon of fluid from the knee. Then they injected the steroid and massaged it into the joint. About half-an-hour later, Mia woke up. She was very upset and groggy at first, but after she had a few crackers she was doing better. And then, The Mia Show began. She told the doctors and nurses present she went to see The Grinch with her friend Alizée and then proceeded to entertain them with very slurred rendition of "You're A Mean One, Mr. Grinch." The audience loved it! That's when I knew she was okay. :)

Dr. Sgarlat told us that she needs to take it easy for the next 24 hours...no major activity. She said walking was okay, but we tried to do that with Mia since she's been home and she seems to be in some pain still. I am really hoping this procedure bring her some relief. But, for now, she is still asking us to carry her. Which is fine by me...my baby has been through a lot!! :(

Thank you, again, to everyone for praying!! We really appreciate it!

And now, my kids are napping and so shall I! :)

Sed Rate, ANA Test and Knee Procedure Day!

2009-05-07T07:14:00.005-04:00

First, a few things to record...

Spoke to Dr. Sgarlat yesterday. Mia's sed rate is very high right now - 60, to be exact. When she was initially diagnosed, she was at 40. Then, a year later, we were able to get her down to 15 (normal). She was not happy with how high it currently is.

When we were at Dr. Foster's office on Tuesday, Dr. Hinkle as us about her ANA test results. So, I checked with Dr. Sgarlat on that, too. She said that Mia tested positive for ANA, indicating to them that, besides her joints, there is some other inflammation going on in her body.

What is an ANA test, you might ask?
It is an antinuclear antibody (ANA) test. The ANA is a screening test. It is a protein which is made by the white blood cells. The ANA test is the most common test to be positive in children with juvenile rheumatoid arthritis. It is often called the "lupus" test. However, in children it is more common for patients with a positive ANA to have juvenile rheumatoid arthritis, since lupus is uncommon in young children. The ANA test is positive in about 2/3 of children with pauciarticular JRA Type I and about 1/3 (or more) of children with polyarticular JRA. Also, the ANA is a marker for patients at higher risk for development of eye inflammation.

With that said, we will continue to take Mia to see Dr. Foster every three months to be checked for uveitis.

Moving on...KNEE PROCEDURE DAY!

Dr. Sgarlat and Dr. Miller will be doing the procedure on Mia's knee. Provided the fluid is clear and not bloody, they will extract the fluid in her knee and inject the steriod (aristropan) directly into the joint. Oh yeah...about that crazy steroid hunt I have been on! After calling several pharmacies and about ready to rip my hair out, I spoke with Dr. Lopez, explaining that we were having a hard time finding it and he said to just bring her in and to not worry about it. I sure do hope they have enough for the procedure!

So, no breakfast or liquids for Mia this morning. We will be heading into Boston soon...hopefully traffic isn't as bad as it was on Tuesday! She has to be there at 9:30 a.m. and the procedure is at 10:30 a.m. Mia's favorite little lamb, "Baa," will be joining us today, for comfort before and after the procedure. Theu told us it would be helpful to her for us to bring something familiar...so, "Baa" it is! :)

I will write more later on how everything went. "Thank you" to our family (near and far) for your prayers. We ask that you stand with us today and pray for Mia. And, "thank you" to all the JRA moms who have emailed me or commented on my blog. Your words of encouragement and prayers have meant a lot these past few days.

Last PT Before Knee Procedure

2009-05-06T14:10:00.005-04:00

Today was a good session, considering Mia is at her worst right now. The PT took some measurements of her joints (0 being "normal:):

Left knee:
Initial Diagnosis: - 20 degrees
A Week Ago (when we started PT again): -10 degrees
Today: -30 degrees (EEK!!)

Right elbow:
Initial Diagnosis: - 8 degrees
Two Days ago: -20 degrees
Today: -15 degrees

Currently, when she is able to walk, she is walking on the ball of her left foot and not putting her heel down at all. She was in a lot of pain today during the session...MUCH resistance to stretching and massage. :(

Up on deck...
Tomorrow: Knee Drained/Steroid Injection at 10 a.m. at NEMC

"The LORD gives strength to those who are weary. They run and don't get tired, they walk and don't lag behind. "
- Isaiah 40:31

I Am THRILLED To Report...

2009-05-05T14:06:00.006-04:00

...there is NO INFLAMMATION in Mia's eyes!!! God is GOOD!

We have just returned from our visit to MERSI where she had her eyes checked by Dr. Hinkle and he confirmed...her eyes are CLEAR!!!

So, I am not sure what Dr. Lopez saw/thinks he saw, but there was nothing there. They checked several times. We plan to stay with this new doctor. The service was outstanding - everyone was so friendly and helpful! Plus, we are happier that she is seeing a uveitis specialist now. So, we will go back there every three months from now on to Dr. Foster's office to get her eyes checked.

You have no idea how relieved,happy and OVERJOYED we are right now! It is soooo wonderful to finally get some good news amongst all the bad. YAY!!!

Up on deck:
Wednesday: PT with Mary
Thursday: Knee drained and steroid injection
Friday: rest from a very loooong week! :)

She's the Bee's Knees!

2009-05-04T20:00:00.005-04:00

Here's a bit of trivia for you, which I find highly enlightening and encouraging!

A bee's "corbiculae", or pollen-baskets, are located on its tibiae (midsegments of its legs - knees). The phrase "the bee's knees," meaning "the height of excellence," which became popular in the U.S. in the 1920s, is a term indicating excellence - the highest quality - because bees carry pollen back to the hive in sacs on their legs. The allusion is to the concentrated goodness to be found around the bee's knee.

With that said, here is what my daughter's knee look like right now. The left knee is bent at -10 degrees...that is the furthest she can straighten it at this time.

(side view)

(front view)

But STAY TUNED because her knee is not going to remain this way! Her knees will be of the HIGHEST QUALITY once again!

(Mia Grace - almost 3.5 years old
and still smiling through the pain)

“Your body will glow with health,
your very bones will vibrate with life!”
Proverbs 3:8 (Msg.)

Full Steam Ahead!

2009-05-04T08:20:00.003-04:00

We have a busy, busy, BUSY week ahead of us. Lucky for me, my husband is home again, providing an extra set of hands around the house (PHEW!). It makes such a HUGE difference. Not to mention, someone who knows exactly how to care for Mia with what has been going on as of late.

To update everyone, last week was a rough on for Mia (and me). She had back-to-back appointments last Thursday and by the end of the second one both she and I were in tears. It had been a loooong week. On top of getting back in the "JRA fight," I came down with tonsillitis and a double ear infection. Great. Just what every mom needs when they are trying to care for their child who is dealing with a chronic illness. As I mentioned before, I am very happy my husband is home!

Moving on...

To Mia's dismay, I switched her eye doctors. Her current doc was a pediatric ophthalmologist, but not a uveitis specialist. So, at Mia's three year check-up last week I spoke with her pediatrician about switching. I've always liked her pediatrician, but now I like him even more. He actually took the time to open up his laptop, check out the si te I directed him to (thank you, Joanne!), review the list of uveitis specialists with me, and agree that we needed to get her in with a specialist. So, I canceled the appointment she was supposed to have last Friday and got her in to Dr. Foster's office for this Tuesday (tomorrow). We are believing for a CLEAR report for Mia's eyes. I still can't figure out why her old doctor never saw the cells and why her rheumatologist did. Very puzzling. But, hopefully, Mia will like this new doctor. I am sure she will...she has a knack for immediately warming up to strangers/new doctors and making them laugh within a few seconds of meeting them. Case in point - while we were in the elevator last week at NEMC, Mia introduced me to all of her new "elevator friends:"

Mia: "Hello, everyone! I am Mia and this is my Mommy!"

Elevator Friends: "Hello, Mia! Hello, Mia's Mommy!"

Me (quite embarrassed!): "Hello! Hello, everyone in the elevator!"

My husband (jokingly): "Pay no attention to the guy pushing the stroller..."

Elevator Friends (laughing): "Hello, Mia's Daddy!!"

Mia: quite pleased with her self. :)

Me: embarrassed, but laughing. :)

Up next...

Mia goes in this Thursday to have her knee drained and for steriod injections (aristopan) directly into the joint. I have been trying my best to make her as comfortable as possible this past week. I have found that long car rides, sitting at the dinner table does not help her knee or her circulation. When I get her out of the car or down from her seat at the table, she can barely walk. She has been asking me to let her scoot on her bum in order to get around. That is too heartbreaking for me. So, I tell her that I'd prefer to carry her than have her scoot on the floor. :(

I have been trying to think of special things that will put a smile on her face since she can't be as active as she'd like to be. That has been the toughest part - finding a balance between sitting and walking/trying to walk. Too much sitting results in stiff joints. Too much walking results in swollen joints. Ugh. So, to keep her happy and smiling I've been allowing her to take "picnic meals" on the couch while watching her new Winne the Pooh movie. We have a chaise where she can sit with her legs out in front of her - the best position for her. We have discovered then when she sits at the dinner table, her left foot becomes ice cold - obviously a ciculation issue because of her swollen knee. So, "picnic meals" it is! Plus, it is something special for her, something we wouldn't normally allow. :)

So, that is about it. Mia is not able to go to school right now, per doctor's orders. I was able to get her in for two sessions of PT before the "big day." She has an appointment later on today and another one on Wednesday. While the appointments are pretty tough physically for her, Mia always manages to make everyone laugh. Last week, at the end of her appointment she took a bow in the hallway and said "Thank you, thank you!" to her therapists. Everyone enjoyed the Mia Show. :)

Back From Boston

2009-04-28T14:32:00.007-04:00

Mia had her appointment today with Dr. Lopez. However, before we even got to the appointment, we had some challenges at home...

Mia woke up this morning and was crying. I went down to her room and she was holding onto the side of her bed, crying and saying, "Momma, I can't walk!" So, I immediately put her in a warm bath to alleviate the pain. Afterwards, she still wasn't able to walk. So, we loaded up the car and headed into Boston. I am SO glad we had an appointment today. Otherwise, I think we would have needed to schedule an emergency appointment for her.

When the doctor came in to see her he could tell right away her knee was very swollen. We told him how we had weaned her off the medicine too fast and gave him the update as far as when we started her back on the Naproxen and when the flare started. After examining her, he concluded that:

1. She will need to have her knee drained. They are looking to schedule the appointment for early Monday morning (5/4/09). Since the procedure is painful, and not one that a small child can endure awake, they will have to put her to sleep for it. They will be draining as much fluid as they can from her knee and injecting a steroid into her knee. Dr. Lopez said the steroid should help her anywhere from 3-6 months up to a year. She has never had this procedure done before (NOTE TO ANY JRA MOMS OUT THERE: any feedback would be greatly appreciated!).

2. New medicine. They are switching her from 7.5ml of Naproxen 2x a day to 11.5ml of Ibuprofen 3x a day. Dr. Lopez feels that the Naproxen is no longer working for Mia. She has been on it for the last three weeks and her condition has only gotten worse. So, the Naproxen is no longer helping.

3. Inflammation in one eye (uveitis). Dr. Lopez examined her eyes and said there is a "density" or "thickening" in her right eye. I told him she was just examined on April 17th by Dr. Zuckerman and she reported there was no inflammation in her eye. However, they did not dilate her eyes at this past appointment and Dr. Lopez said they should be doing it every time she goes. Also, her flare occured right after her last appointment. So, either they missed it or it wasn't there until afterwards. So, we are going BACK to see Dr. Zuckerman this Friday (5/1) to have her dilated Mia's eyes and check again. Results from this past visit and the one this Friday will be sent to Dr. Lopez for his review.

4. Leg brace. We can't get her fitted for a brace or have her use a brace until we get the swelling down. Once that goes down, then she can be fitted again to wear a brace on her leg again at night to help keep her leg straight.

5. Scan-o-gram. Mia had another scan-o-gram done today after meeting with Dr. Lopez. She's such a pro now! She went in with her daddy, they said "cheese" during the "picture taking" and when she left the room, she took her Daddy's hand and said, "So ANYWAYS....let's go see my Mum!" Like I said, SUCH A PRO!!

6. Blood work. They did more blood work again today. Unfortunately, we've gone there so many times now that this time Mia knew where we were and what the lady in the other room was going to do to her. She was not thrilled. I will get the results back in the next day or so and find out what her sed rate is, etc.

Phew! I think that is it! So, we are going back to what we kn ow and what worked for her at the very beginning of all this - switching her medicine, very restricted diet and cod liver oil. For now, I am taking her off eggs again to see if that helps. Right now, I am just trying to make her as comfortable as possible for the next few days until she has this procedure done to remove the fluid from her knee.

Do we feel discouraged? Nah. We've already been down that road. There's no point to it! If anything, we feel empowered. We have another battle to fight. We have fought it once before and we'll fight it again. We have seen Mia arthritis-free! We got a good report several months ago that there was "no evidence of arthritis in her body." We are holding onto that good report. We will not remain here, but we will go through it! We are surrounded by the best doctors and therapists and our wonderful family and friends who are always supporting us with prayers and encouraging words (THANK YOU!!!). Most importantly, God is her healer. So, we shall overcome!!

One Step At A Time

2009-04-23T14:55:00.008-04:00

Mia had her physical therapy appointment with Mary this morning. First thing Mary said when she saw her knee was that it looks larger than it has ever looked, even larger than it was at her initial evaluation. My heart sunk. To confirm her evaluation, she had Kathy, the other PT who saw Mia when she was first diagnosed, come in to take a look at her knee. Kathy said the same thing. Her knee is hard as a rock and very knobby looking. Usually when there is fluid on or near her knee Mary is able to massage it away, pushing the fluid away from her kneecap. However, it is almost like the fluid is tucked underneath the kneecap in an unreachable spot...and that it is hardening?? Or there is an overgrowth of cartilage. Weird. All I know is it is BIG.

Mary was concerned that she may need to have her knee drained. My heart sunk even further. She has never had this procedure done and I am praying that she won't have to. But, that is something for the rheumatologist to decide.

As far as her range goes, zero being normal, she is back at -10. That's quite a jump back after being between -2 and 0 for such a long time. When the measured her at her initial diagnosis, her knee was bent at -20 degrees. In November 2007, after one month of being on the naproxen, GF-DF-EF diet and cod liver oil, we were able to get her knee down to -10 degrees. So, we know what works, we just need to buckle down, again, and do it! Fast!

The other concern both Kathy and Mary had was that the length of her left leg is measuring longer than her right. This is a common side effect with JRA - the joint affected tends to cause that leg to grow faster than it should, resulting in legs of different length and muscle wasting. Mia's scan-o-gram back in June 2008 showed that her left leg was measuring 1cm longer than the right. It is now measuring 2cm longer than the right. So, Mary suggested we talk to Dr. Lopez about putting a "lift" inside Mia's right shoe in order to balance her out and to prevent her hips and back from being affected due to the difference in the length of her legs.

During PT, Mary iced Mia's knee for about 15 minutes and then tried to get Mia to climb the stairs (three steps up, three steps down). Mia placed her right foot on the step (in order to protect her left) and then refused to go any futher. She begged Mary to hold her hand and help her up the stairs. We tried to encourage Mia to do it on her own, but she started to cry and said she needed help because it was going to hurt. So, in the end, Mary helped Mia climb up and down the stairs. And, just like she used to do in the beginning, Mia would go up with the right and come down with the left, allowing her right side to do most of the work in order to protect the inflammed joint.

At the end of the appointment, Mary suggested we call Dr. Lopez's office to get Mia's appointment moved up from May 7th to a.s.a.p. I called them today and he is going to see her on Tuesday, April 28 in the morning at the Boston office. She also highly suggested aquatic therapy. I need to get a referal from her pediatrician for it, but we do have a place nearby that does aquatic therapy for children. As for physical activity, it needs to be limited - no jumping, riding bikes, etc. I am thinking, "Great...how do you keep a child from doing the things they love to do?".

We are taking each day as it comes, one step at a time. Mia has one more PT appointment before we meet with Dr. Lopez on Tuesday. We are really trying to work at getting that knee down before he sees her. I am already preparing myself as it could be a long appointment on Tuesday - more blood work, possible ultrasounds, etc. We will see what he says.

On a more positive note, we are going to be having some GREAT weather this weekend. So, in order to make things as normal as possible for her, I am hoping to get the kids outside a bit and maybe take them for some walks...in the stroller, of course. Fresh air is always a good thing, especially for mommies. :)

More to come on Monday after her next PT appointment. Stay tuned...

A Million Questions

2009-04-22T16:00:00.006-04:00

Was it too much sugar?

Was it because she went off the medicine too fast?

Was it the rainy weather?

A million questions fill my head, along with a million reasons why I HATE JRA.

With that said, it is official...I have returned to this blog. As most of my readers know, this is my personal online journal. I write to keep track of what is going on with Mia and how JRA is affecting her body. I write to keep myself encouraged. And, I write to inform others to ask them to pray for our little girl.

While I enjoy writing, I must admit...I was thrilled to be able to take a break from this blog. Mia had been doing soooo well for soooo long. And, now this...her second flare:

(left knee swollen from JRA.
also, bony overgrowth of cartilage
on the inside of her knee from the arthritis)

The first flare happened back in November of 2007. We worked HARD to get the inflammation down in her body. Just thinking about all the tests, medicines, MRI, therapy sessions, ultrasounds, leg braces, elbow wraps overwhelms for me...so I won't go there. We know what we have ahead of us. Most importantly, we know what to do to get the inflammation down in her joints.

For those of you who have no idea what juvenile rheumatoid arthritis is it is an autoimmune disease, meaning that white blood cells lose the ability to tell the difference between the body's own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.

At her initial diagnosis when she was 22 months old, her right elbow, left knee, right ankle and several toes were inflamed and swollen. She had a hard time straightening her leg and would drag it when she walked. She could not straighten her right arm all the way either. But, once we put her on a gluten-free, dairy-free, eggless diet and started giving her a teaspoon of Carlson's Norwegian Cod Liver Oil once a day we saw immediate results. It took a little more than a year and then we we finally received the good news from her doctor - "no evidence of arthritis in her body." (I am holding onto that good report because I believe she will get there again!)

Fast forward to today.

In the last week or so, we noticed some swelling again in her knee. So, when I dropped her off for school today I informed her teachers so they would be aware of any discomfort she may be experiencing. I specifically told them if she was going to have any problems it would be after nap time. With JRA, when a child has a TON of activity and no period of rest (like a full morning at school) and then lays down to take a nap (on the floor) after several hours of activity, the joint(s) affected tend to swell up, creating a very painful situation when the child wakes up.

And that is what happened today.

I got the call at 3:00 p.m., right after nap time, that I should come get Mia because she was in crying and saying her knee hurt. When I came to get her she was limping. So, I took her home immediately and put her in a warm bath to try to ease any pain/discomfort she was having. The rest of the evening was filled with tears.

Luckily, Mia has an appointment tomorrow morning with Mary, her physical therapist. We haven't visited with Mary since November 2008, so it will be very nice to see her. Mia LOVES Mary!! We are very blessed to have found such an awesome physical therapist. Mary is the best!

We have an appointment scheduled for May 7, 2009 to meet with Dr. Lopez, Mia's rheumatologist. She has been going to Dr. Lopez since she was 22 months old. Our goal at PT this week and next is to get the swelling down before her appointment with Dr. Lopez.

So, we are back to a very restricted diet for Mia - no gluten, no dairy, no sugar. Wow...every toddler's dream diet!! Poor girl! I am even considering taking her off of eggs again if the swelling does not go down soon. Mia LOVES eggs, so we shall see.

Please keep Mia in your prayers. We will continue to stand on the scriptures I posted in the beginning of this journey and believe for a complete healing for our daughter.

"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)

Back To The Drawing Board!

2009-04-17T12:28:00.008-04:00

As you may remember, we received a very good report from Mia's rheumatologist back in December regarding her JRA. He said there was no evidence of arthritis in her body and said we could start weaning her off of the naproxen. Overjoyed with this wonderful news, we did something very, very stupid - we let our guard down. Her rheumatologist said the weaning process would take three to six months. We did it too fast.

We were fairly consistent in January. When February came, we started to slip up missing doses here and there until she was completely off the meds the entire month of March. During that time I added white potatoes back into her diet and she has had more white sugar than she normally does. Jellybeans and peeps are a huge fave in our family. Darn Easter!! :)

I think it was a combination of several things - we were tired, exhausted and worn out from the various doctor appointments, therapy appointments and daily medications we were giving Mia. We needed a break. I needed a break. The previous year had been such a horrible one for our family and when we received this bit of hope, we breathed a huge sigh of relief thinking everything was over. The other side of it was we were curious to see how she would do with out the meds and just on the diet alone. Guess we know now, don't we...

Mia had her eye appointment today with Dr. Zuckerman. While she got a good report about her eyes, her doctor took a look at her left knee and wanted to know what happened. So, I admitted to her that we slacked, but told her she is back on the meds again. She warned me about how easy it is for uveitis (inflammation in the eyes) to suddenly pop up out of nowhere when a child is having a flare. She said she's seen it too many times in patients, especially young girls with JRA.

So, that's where we are at. Mia is back on naproxen twice a day, cod liver oil once a day, and we will be starting up physical therapy again. We will also be meeting with her rheumatologist this month...and, hopefully, we won't get scolded for our stupidity.

Well, friends, that is the latest news in our journey...we are smack in the middle of Round Two with JRA. At least we know what to do this time around. Now, we just need to get Mia's inflammation down and get her back to feeling better. Please continue to keep her in your prayers (and us, too)!

Barometric Pressure?

2009-01-27T15:47:00.002-05:00

As I have mentioned in the past, the purpose of this blog is to record and JRA issues Mia may be having. She has been fine for the last month or so...until today. She has been complaining all day long that her left knee has been hurting. So, I did some of her at-home PT exercises with her and applied dry heat to the joint to help loosen it up.

In the past, whenever we were about to get a snow storm, Mia's joints swelled up from the barometric pressure. It became a pattern: storm + pressure = inflamed joints. And we are expecting another major storm tomorrow, so I am going to see how she is after that. If she isn't better in the next few days, I am going to call her PT to schedule an appointment.

Stay tuned.....

"No Evidence of Arthritis"

2008-12-11T20:58:00.004-05:00

Today was a big day, a HUGE day for Mia (and for our family). We took Mia to see Dr. Lopez and after examining her joints he told us...

"There is no evidence of arthritis in her body."

Praise God!! We are so completely happy! It has been over a year now since Mia's initial diagnosis of JRA. It has been a long, hard road for all parties involved. Medicines, physical therapy sessions, occupational therapy sessions, leg braces, MRIs, ultrasounds, x-rays, TONS of blood work, TONS of tears (from both daughter and mommy) and now, finally, we are on the other side of things! It feels amazing. More than amazing....it is a dream come true! Our daughter no longer limps, no longer drags her leg when she walks, no longer cries in the middle of the night while she is sleeping. She runs, climbs, jumps and plays like any other child her age. She just finished eight weeks of ballet classes and enjoyed every minute of it. She is blessed. We are blessed!

So, what's up next? Well, her doctor gave us permission to start weaning her off of the naproxen! He said it will take three to six months to wean her off of it because they keep the dosage the same, but don't increase it as Mia gets bigger. So, provided she doesn't have any flare-ups between now and then, we will be able to take her off of the medicine she has been on for over a year now. We will have to keep up with the eye doctor appointments to check for uveitis and pay a visit to see Dr. Lopez three months from now, but that is it! Hooray!!!!

Thank you to everyone who has prayed for Mia and for us. We greatly appreciate you standing with us and believing for our daughter's health to be completely restored.

We have overcome! :)

Back to the Rheumy!

2008-12-09T12:06:00.002-05:00

This week is the BIG WEEK! We are heading back to the rheumatologist on Thursday morning for another check-up for Mia. We are believing he will still be impressed with the improvements she has made and maybe, just MAYBE, we can start weaning her off of the naproxen. She has been on it for over a year now - 7.5 mls twice a day.

So, please keep Mia in your prayers this week!! I will post an update on Thursday to let you know what the results are of the appointment. :)

Slowing Down...

2008-11-13T21:40:00.001-05:00

As you can tell from the dates of my posts, things are slowing down...with JRA. And we couldn't be happier! We are at a different place now than we were a year ago - physically for Mia; emotionally for us. We are stronger. We have come through a very difficult time for our family. And, we are very, very blessed!

Mia is still on a gluten-free, dairy-free diet. We have added eggs back into her diet (this past July), to which her body doesn't seem to mind. And it makes it MUCH easier for me when it comes to baking and cooking for Mia.

She is still seeing a physical therapist, but only once a month now. She still takes 7.5 mls of naproxen twice a day and 1 tsp. of cod liver oil every morning to help keep her joints loose and keep the inflammation down. In December at her next rheumy appointment, we are hoping Dr. Lopez will say we can start weaning her off of the naproxen. And then we will start adding things back into her diet to see what causes a flare.

Here is an update to give you an idea of how much better Mia is doing:

Comparison of last year to now...starting from head to toe:

Last year: her elbow was bent at -8 degrees. She would cry or pull away from you if you tried to straighten it.
Now! Her elbow is almost straight. On her worst day, it is bent at -3 degrees.
Last year: her knee was bent at -20 degrees and was as big as a tennis ball. She was dragging her leg and limping all of the time. She could not run, jump and could hardly keep up when walking. People were constantly asking me if she injured her leg or if she fell. It was awful!!
Now! She will be finishing her very first ballet class this Saturday. I almost cried during her very first class...it was hard to hold back the tears. I was SO PROUD!! She can run, jump and dance without any difficulty. She has minimal fluid on her knee, but she does have a boney overgrowth of cartilage on the inside of her knee that has developed from the arthritis. She still can't hyper extend her leg (get her heel off of the ground) when she is sitting down and it is straight out in front of her, but we know that will come in time. She is starting to alternate legs when going up the stairs. We are still working on helping her to get over her fear of going on the climbers at the park, but know she will eventually conquer her fear and not feel like she has to be cautious to protect her joints.
Last year: At her initial diagnosis, they said that her ankle had some swelling and fluid on it. One month later, her rheumy said her ankle was fine. :)
Now! Her ankle is still fine...still no swelling (nor will there be any!)
Last year: Her big toe on her right foot was swollen and very large, along with her second toe on her left foot. This is the first thing that alerted us that there was a problem when she was 15 months old.
Now! Her other toes seem to be catching up to her big toe and it seems to be getting smaller.

Overall, she is doing great!! She is much more active than she was a year ago. It is great to see her so happy. We look back on this past year and are so proud of the things she has overcome. She had to endure a lot, especially in the beginning, and came through it with flying colors. She is looking forward to sledding and building snowmen this winter...what every normal, healthy child enjoys doing. She is tackling life head on, full throttle - leaving JRA in the dust!

Two GOOD Reports!

2008-10-14T12:00:00.000-04:00

Well, Mia had her appointment with her rheumy last Thursday and he said everything looks good! He did notice a bit of swelling and inflammation on her left knee still, but very minimal. Also, he was concerned because she still can't hyper-extend her left leg. She can with her right, but not with her left.

So, for now, he wants us to continue on the naproxen and see him in two months from now for another follow-up appointment.

On Friday, Mia went to the eye doctor's again for her every-three-months appointment. The doctor dilated her eyes this time and took a peek all the way in the back and there are no signs of uveitis!! Praise God! :)

That's the latest. We've come a long way and will continue to keep her on the diet until she is off of the naproxen completely. Hooray!! :)

We are continuing with PT and OT (once a month now for both). Also, Mia has an evaluation coming up in the next couple of weeks with our town's public school system to get her transferred over from E.I. to their program. She can only be a part of E.I. until the day before she turns three (which is two months from today!). I've heard great things about their program and am hoping the eval goes great and they accept her so she can receive PT/OT services from them.

GF Rice Crispy Treats!

2008-10-08T12:00:00.001-04:00

I get excited when I find new GF-DF treats for Mia and am constantly on "the hunt" for different. Last night, I was out at Trader Joe's and happened upon these little tasties:

I am really excited about them, too, because she has a bunch of parties coming up at school and I don't want her to feel left out! Three cheers for TJ's rice crispy bars!

One Year Later...

2008-10-04T07:49:00.005-04:00

Hello!

I've taken a bit of a break because my parents have been in town with us and we have been quite busy over the last several weeks. Mia got moved up to the next class at school (she is now in the three-year-old's class with her new teacher, Miss Linda). And we've attended birthday parties, gone to the apple orchard and played outside as much as we can because the chilly winter air is right around the corner!

So, we are in our third month now since Mia's last visit with Dr. Lopez and it has been a NICE break...for all of us. We have reduced her PT & OT to once a month and she has been doing great. Mia is now in ballet classes every Saturday morning (which has been approved by both her doctor and her therapists). She is still taking naproxen twice a day (7.5 mls), but no flare ups or inflammation issues!!

We meet with Dr. Lopex next Thursday for a check-up. Three months from THAT appointment, if Mia continues to do as well as she has been doing, he said we can start to wean her off of the naproxen. Hooray!

We have added eggs back into her diet...so far, so good! However, we are waiting on the dairy and the gluten until after she is off of the naproxen completely because it would be hard to tell if either of those things are affecting her while she is on the medicine.

Also, Mia goes back next Friday for another appointment with the eye doctor. This time they will dilate her eyes to get a good look all the way into the back to check for inflammation, which we are believing there will be none of!

All-in-all, it has been a nice break..from everything. It was one year ago this month that she was diagnosed...and it has been a rough year for all of us, but especially for her. I pray we go into the new year a bit better than we did last year. We were completely blindsided by JRA and I am definitely ready to say goodbye to 2008 (for many reasons...more than just JRA). Mia endured a ton of appointments, many therapy sessions, blood work (again and again and again!), an MRI, ultrasounds and x-rays, a leg brace, medicines, iron supplements for anemia, bandage wraps for her elbow, many STIFF (and tearful) mornings, and one horrible flare-up last November. She is no longer dragging her leg or limping when she walks. And her elbow is almost there...bent just a few degrees. She has been running more, jumping more and enjoying life more. Looking back, I am SO GLAD we put her on the diet when we did because I don't think we'd be where we are right now if we didn't. Best decision we made for her!

It is so good to be on the other side of things now. :)

Birthday Parties

2008-09-10T22:17:00.005-04:00

Not only does Mia have a birthday party to attend this Saturday for one of her classmates at school, but I was informed earlier this week that two of Mia's classmates are celebrating their birthdays this week at school, as well. Therefore, there will be TWO birthday parties this Thursday and one more on Saturday. Suddenly, I get this sinking feeling in my stomach. Birthday parties means "party food" and "party food" means pizza, ice cream and cake - three things Mia can't have.

Lucky for me, one of Mia's teachers is a friend of mine who informed me what the menu will be: cupcakes at 10:00 a.m. (why anyone would give three year olds cupcakes this early in the morning is beyond me!) and then pizza and MORE cupcakes for lunch. Woah! Can anyone say "sugar overload?" Good luck getting those 20 kids down for naps! Ack!

So, in the attempt to make sure my daughter does not feel left out, I headed out to Whole Foods, hoping to hunt down a GF-DF pizza just for her. I've already made GF-DF cupcakes for her - piece of cake! Heh heh! But, Mia hasn't had pizza in almost a year now. Birthday parties can be a BIG headache for parents who have kids who are on special diets.

However, I struck it rich today! Low and behold, in the frozen foods isle at WF, I discovered these:

Amy's Single Serve Non-Dairy Rice Crust Cheeze Pizza

I quickly snatched up three of them (costing an arm and a leg - about $20) and made one for Mia for dinner tonight to try it out on her before sending it in with her to school tomorrow. She LOOOOVED it! And I almost cried....and then quickly regained my composure after Mia gave me this funny, teenageresque look like, "Mom...what is wrong with you??" LOL! It has been sooo long since she has been able to eat something like that. And I enjoyed every moment of it. Probably more than she did!

Suddenly, I love birthday parties once again. :)

Joint pain...

2008-08-21T15:13:00.008-04:00

I received a phone call from Mia's school today. They said she woke up from nap time crying and holding her knees and saying that her knees hurt. So, they held her for a bit and tried to comfort her...and then ended up calling me at work.

She did tell me this morning at breakfast that her knees hurt, but sometimes it is hard to tell with her. I didn't question her about it and probably should have. I didn't physically check her out and I probably should have. She's been doing so well lately. And it is hard when you have to get everybody dressed, fed and out the door so you can get yourself to work. I was a bad mommy today for not paying attention.

She just changed classes from the two-year-old class up to the three-year-old class. So, I have to re-inform her new teachers & aides of her health issues and special diet. It is like starting from the beginning again. And I have been avoiding it. Because I am tired. And some days I wish this was all over with.

Her new teacher was very kind on the phone. She asked what they could do to help and what they should do in the future if she has a flare. I told her I will bring in her rice pack that they use on her during her PT sessions. They can put that on her knee(s) to warm them up after nap time before she jumps back into playtime. I am hoping today was just some mild stiffness from just waking up from her nap (and that this morning's incident was just morning stiffness...nothing more than that!). They said she seems to be doing better, but they were very concerned. It is hard to tell when you aren't there to actually see her and know what is going on. Her teacher told me this class is much more active than Mia's previous class, so perhaps she just overexerted herself today? That's my guess.

Perhaps she is having pain because we've introduced eggs back into her diet? I don't know. Hopefully, she is better when we pick her up from school today.

I stumbled across this picture of her today. She was 3.5 months old here....hard to imagine she will be 3 years old in just a few months. In such a short amount of time she has gone through so much.

Heh heh...I loved this outfit! Her Grammy and Papa bought it for her. It reminds me of something my mother would have put me in. I was always dressed in red. :)

Sweet, sweet baby girl. We love you so much!

Autoimmune Ailments: Suggested Diet Plan

2008-08-12T09:52:00.004-04:00

This was given to me by a family nutritionist. The diet plan was created for adults so I modified it a bit to make it more kid-friendly (come on...how many kids are going to eat salmon or sardines?!?!). Also, based upon my research, there were a few items that were included in the diet plan that are on the "No No List" for inflammation. Keep in mind, this is just a suggested meal plan.

Autoimmune Ailments
(Colitis, Crohn’s Disease, Type I Diabetes during onset, Hashimoto’s Thyroiditis, Lupus, Myasthenia Gravis, Rheumatoid Arthritis, Multiple Sclerosis, Scleroderma, Sjogren’s syndrome)

breakfast

2-3 omega-3 eggs any style, grilled sweet potato or sweet potato pancakes with maple syrup, strawberry-kiwi iced herbal tea
Reheated leftover chicken or turkey or other meat, 1 fruit
Smoked or leftover salmon, sweet potatoes with rosemary, green tea
3-4 Tbsp. freshly ground almonds with other nuts and seeds (flaxseeds, pumpkin seeds, dried coconut) and 1 tablespoon maple syrup in food processor, herb tea iced/warm
Organic almond butter (Maranatha) on a celery stick

lunch and dinner

Buffalo, turkey burger or lean hamburger with lettuce, tomato and cole slaw. Ketchup, mustard and pickle relish may be used if desired
Beef stew (Beef, assorted vegetables, wheat-free soup stock, herbs and spices)
Broiled red snapper with Shiitake mushrooms, steamed broccoli, green salad
5-8 ounces broiled salmon, tomato sauce w/oregano, thyme, garlic, grilled vegetables, roasted parsnips, Caesar salad
1 free range chicken breast with rosemary, roasted onions or garlic, spinach salad.
Fillet mignon, baked/grilled sweet potatoes with rosemary and olive oil, steamed asparagus, salad with flaxseed dressing

snacks

Handful of raw assorted nuts, roasted garlic or almond butter on celery, organic fresh or dried fruit of any kind, Cascadian farm organic Sorbet or fruit pops

beverages

8 oz. Fresh mixed vegetable juice 1-2x per day
Green drinks: Green Magma, Kyogreen, or Green Kamut: 1 tsp. 1-3x day in water
Herbal Teas: Licorice, Slippery Elm, Chamomile, Ginger
Spinach Smoothies

eliminate grains
Eliminate wheat and the other three gluten containing grains: oats, barley, and rye. Wheat is found in bread, breadsticks, rolls, cereals, pasta, crackers, cakes, cookies, and most cereals. Avoiding all grains (including rice, millet, amaranth, etc.) for three to six months is recommended if possible as well. Then, after 3-6 months, reintroduce rice and wild rice, millet and other non-glutinous grains to see if the patient can tolerate them.

eliminate dairy products
This includes milk, butter, kefir, cheese, and even soy cheese products containing the milk protein casein. Yogurt may be tolerated in small amounts because the lactic acid in the yogurt denatures the proteins that may be allergenic in other dairy products. Whey protein may be tolerated, as it does not contain casein.

also avoid
Beans, lentils, yeasted foods, blue cheese, tempeh, tofu, soy protein isolate (these soy products contain alpha-gliadin), peanuts, citrus fruits, sugar, alcohol, caffeine, hydrogenated and partially hydrogenated oils, and safflower, sunflower and corn oils

suggestions and goals
The goal is to remove all foods that may be triggering the body to attack its own tissues. Researchers believe that one of the possible causes of autoimmune ailments is certain foods that are new to humanity (grain products, dairy products, lentils and beans, and yeasted foods) which have only appeared in the past 40,000 years. Meats, nuts, vegetables and fruits have been eaten for over 2 million years. Therefore, returning to a diet that is made of meat, nuts, and produce may remove one of the main offending causes behind autoimmune problems. It can take 3-6 months to assess whether this program is effective.

If possible, get a moderate amount of exercise, 20 minutes of sunshine per day, a good nights sleep. Take epsom salt baths 1-2 times per week. Add 4 cups of epsom salts to a warm bath and stay in for 10-15 minutes.

supplements (these are adult dosages...not for kids!!)

Acidophilus and Bifidobacteria// 1-3 teaspoons of powder (Natren)
EPA/DHA// 1,000-10,000 mg (1-10 Tbsp. Super Max EPA)
(approach doses above 5 g/day with close supervision)
Glutamine// 1-5 grams
GLA 240// 1-3 capsules
Flaxseed Oil// 1-3 tablespoons
Vitamin C// 1-3,000 mg
Vitamin E// 400 IUs
Selenium// 200-400 mcg
N-Acetyl-Glucosamine (NAG)// 300-900 mg
Bovine cartilage// 9 grams/Twelve 750 mg capsules/day (Vita Carte)
(use with caution—may overstimulate immune system in some)
Magnesium// 400-800 mg
Siberian Ginseng Extract// 50-200 mg of powdered extract or 1-2ml of liquid
Olive leaf extract// 1-3 capsules per day

rheumatoid arthritis:
Curcuminoids// 400-1,000
Quercetin// 300-900 mg

Those with rheumatoid arthritis should read "The New Arthritis Breakthrough" by Henry Scammell. Highly recommended reading: The Tao of Immunity by Dr. Mark Lappé. Also, "The Maker's Diet" and "Patient Heal Thyself" by Jordan S. Rubin

Saying Our Goodbyes...

2008-08-11T14:25:00.003-04:00

We met with Mary today. While it was a good appointment, there is still some areas in Mia's body that need help - her left knee was puffy underneath her kneecap and her right elbow is still very bent. Mia still has a hard time rotating her right arm so that her palm is facing upward. While these are minor things compared to what other children may be dealing with, they are still issues that prohibit Mia each and every day.

However, Mary agreed with Mia's rheumy that she is in a better spot than she was several months ago. SO....we are reducing her PT to once a month, unless she has a flare. Mary said many kids do well and then return later on down the road if there is a flare. If this happens to Mia, Mary said all we need to do is call them up and let them know. Since Mia has already been seen by them and has a history with them, she will be placed at the top of the list to be seen. Mary said this is their protocol for all JRA patients. Which is very nice...and, as a mom and the one who is in charge of and attends all of her appointments, this brings me much relief. But, for now, we are going to hold onto Mary and see her once a month. Her concern (and mine) is that Mia may be affected by the cold weather in the next several months. So, we don't want to discontinue completely in the event that she experiences any pain from the weather, like she has in the past.

So, for now, we said "goodbye" to Mary...until next month. Mia was very sad, but I explained to her that she won't be saying "goodbye" forever...just for a few weeks. So, we have given up our much-coveted, 10:00 a.m. morning slot and now we have to call ahead and just take whatever cancellations they have available.

With the cold weather approaching (*sigh*) and as an alternative to PT, we are going to look into aquatic therapy for Mia for the fall. This will help keep her joints fluid and her rheumy said many JRA patients have benefited from it. The only problem now is finding a pool. I checked with EI and they said they don't offer anything through their program. There are three pools in our area: one is about to close, and the other two don't do pediatrics. However, there is a center in Salem, NH that has a pool. I am going to contact them this week to see if we can get Mia on their list. If I can find a pool for Mia, then we need to contact our insurance company and see if they will cover it because most of the time they will only cover aquatic therapy OR PT. Not both.

In regards to OT, well, the new OT really isn't an OT...she is a PT. And we already have a PT. And while we love the social worker who works with Mia's language skills. frankly, I have NO idea why she has been assigned to have help in her social skills. On her initial eval when Mia was 22 months, she scored at a 26-month-old level in language/speech skills (surprise, surprise!). I think we all know that Mia can talk...and talk WELL! I guess they heard her throw in what they call "jargon" in the middle of her sentences and they consider this to be a speech delay. HA! My daughter has no type of speech delay whatsoever. To be sure, I asked her PT today if she thought Mia had a delay. She laughed, too. She said that Mia's language and cognitive learning skills are where they should be and that definitely does not have a delay. I had to be sure. I am her mother and I can understand EVERYTHING she says, even when it is mixed with "jargon." it is nice to have it confirmed by someone who only sees her once a week.

So, I told Cheryl (social worker), that we want to reduce our services. To which she told me that they, too, can do the once-a-month thing, but that only one therapist can attend. So, I told her, in a way as to not hurt her feelings, that since Mia's diagnosis requires more physical therapy than social, that we would go with Stella.

So, Stella will be visiting once a month. And Mia had to say "goodbye" to Cheryl. I think Cheryl almost cried. She hugged Mia for a very long time. It is hard when a child and a therapist develop a relationship and then have to say "goodbye." It is even hard for the parent(s). Cheryl has been working with Mia for almost a year now! But, Cheryl will remain the service coordinator and when we meet with the public school system next month we she will attend those meetings to help transition Mia over to their program. We are definitely going to continue to pursue getting her in with the public schools because their services are free and, should Mia have a flare, we will have another resource to fall back on.

While Mia is doing very well right now, I need to keep in mind that the JRA is not totally gone. It has not completely left her body yet. To many who know her, she looks fine. But, I know what to look for and what she still struggles with and there is still a battle to fight. I am reminded of those parents whose children had JRA when they were Mia's age and when they were a bit older experienced an unexpected flare which put them back at the beginning again (and on stronger meds the second/third time around). While are a hoping for the best and believing for a good report in October when she returns to the rheumy, we are also reminded that we need to continue fighting until she is completely JRA-free. And she will be...one day! :)

Why People With Arthritis Should Avoid Nightshade Vegetables.

2008-07-31T22:26:00.004-04:00

I know I have posted about this before, but I am posting about it again because I have received several emails from JRA families who are inquiring as to what steps we have taken with Mia to improve her quality of life. Besides gluten, dairy and eggs, we also eliminated the "nightshade family" vegetables from her diet, which include:

potatoes (not sweet potatoes)
tomatoes
eggplant
sweet and hot peppers (including paprika, cayenne pepper and Tabasco sauce)
ground cherries
tomatillos and tamarillos
garden huckleberry and naranjillas
pepinos and pimentos

Nightshade vegetables are among the foods that some people feel can trigger arthritis flares.

In the next several posts, I will also share the protocols that have helped our daughter, in the hopes these protocols will help other children out there who are suffering from JRA. Children should have a happy, healthy, pain-free childhood. They shouldn't have to wait until they are in their teens to see if they are of the 82% who outgrow their JRA.

No child should wake up in the morning and be in excruciating pain as soon as their feet hit the floor. No child should be on steriods and NSAIDS for a prolonged period of time. And no child should be robbed of a healthy childhood.

Children were designed to live happy, non-restricted lives. They were designed to climb trees, do cartwheels all over their backyard and be in gymnastics and ballet recitals. For this very reason, we decided to go the natural route for our daughter. We were desperate and willing to try anything to help her. And this has worked for us. Granted, everyone's arthritis is different, but isn't it at least worth a try? I think it is.

Overcoming...Again!

2008-07-23T12:14:00.004-04:00

Our appointment with Dr. Lopez went very well today. He said Mia still has some stiffness in her right elbow and bony overgrowth in her left knee and right toe. To people who don't know what to look for, she just looks normal to them. But, Jay and I can see it. We know the challenges she has faced and is currently facing and how the arthritis prevents her from doing normal, every day activities. She doesn't run as fast as the other kids. She doesn't take part in physical activities that other children are interested in. She still has trouble walking up and down the stairs. It will take time, but I believe she will live a normal, healthy life.

The bone scan that she had done last month did confirm that her left leg is longer than her right. Which could be the reason why she still has trouble walking or why she walks so slow and it constantly feels like we are pulling her along when she holds onto our hands. Our friends' daughter who was diagnosed with JRA at an early age is the same way. She also walks verrrrry slow because of the arthritis.

Sooooooo.....here's where we are at now:

SIX MONTHS FROM TODAY if she does not have any flare-ups, if her sed rate remains low (below 19) and if there aren't any other issues (uveitis - inflammation in her eyes), then he is going to start to wean her off of the naproxen. Hooray! However, if anything negative occurs during those six months then that just sets her back from getting off of the naproxen.

As far as therapy goes, he left that decision up to us. He said if we stopped it that we had to make sure that we are doing all of the PT at home with her on our own....something neither one of us has much time for. Or, we could just have Early Intervention come to the house once a week like they have been doing and we could cancel our other PT session with Mary. The only thing that is holding me back from canceling with Mary, besides the fact that Mia LOVES her and she is a really great therapist, is the change in weather in the next several months. We've seen how cold temperatures affects Mia's joints and I would hate to cancel with Mary and then have to call her up again should Mia have a flare-up once the fall/winter season is upon us. And who knows if we will even be able to get in with Mary again!! So, we have a lot to consider regarding therapy. I want to talk to Mary and see if we can go down to once a month just for now....so as to not lose our spot with her.

We are going to actively start adding things back into her diet. I am going to try her with the whole egg this Friday (ack!). I don't want to do it tomorrow only because she has to go to school and I would hate for something to occur there where we can't be there to help her. So, I am going to wait until Friday where I will at least be close by should she have any issues.

After that, I think we will try dairy. Ugh. And I'll save those worries for another day.

Today is a good day - she is in a much better place than she was nine months ago. We have much to celebrate!

Up On Deck...

2008-07-21T16:36:00.005-04:00

So, "up on deck" for this week is (drum roll, please!) .......

......another trip to see the rheumy.

We head BACK into Boston (the story of our lives...or at least the past 9 months!) this Wednesday for another check-up. Hey, at least they have a great Au Bon Pain across the street. We've made that our official "hang out" place when Mia has those longer appointments or if we need to grab a yummy snack when our meeting with the doc is over. :)

In other news:
Mia had a great session today at PT. Mary said she is looking really good. Her only concerns are the fluid that is still on her left knee and that Mia seems to be rotating her left hip inward when she walks. Mary took measurements again of Mia's left leg (hip to ankle) and of her knee. Mia's left leg is still 1cm longer than her right. That may be the reason why she is turning inward when she walks. Other than that, she said she looks good! She told us to inquire with her rheumy if she still needs PT or not. Wouldn't that be nice!

Foods revisited:
Because Mia's sed rate was so low at the end of May, we have decided that now would be a good time to start trying to add things back into her diet. So, we started with egg whites about a week ago. So far, so good. The only thing I am concerned about is that Mia has had bad diarrhea in the last week or so (again yesterday). I am thinking it is related to the egg whites because it is the only new thing we've added into her diet. So, we shall see. I haven't tried giving her the yolk of the egg yet because if anything is going to cause a flare it will be that. So, perhaps one day, when I am feeling ultra brave, I will offer her the whole egg. We need to figure out this diarrhea thing first, though. Kind of interesting that she has symptoms like this when she is on THREE meds that are VERY binding. Ugh...who knows!

More later on our trip into Boston...

Friday's Checkup

2008-07-13T21:11:00.003-04:00

For those who have been keep up with my updates concerning Mia, this past Friday I took her to her three-month checkup with the eye doctor. Her doctor took a peek in her eyes and confirmed, once again, there is absolutely no inflammation in either of her eyes. This is wonderful news!!

We go back in September for another examination.

Unfortunately...

2008-07-08T18:00:00.001-04:00

As many of you know, this is my personal journal/log of all the JRA-related events that have occurred with Mia. Yes, I blog about the good things, but, for my own record, I also blog about topics that may not be suitable for those readers who have weak stomachs. So, this is your warning. If you are that type of person (like my husband...heh heh!), then don't read this entry. :)

Yesterday morning, Mia had some blood in her stool. So, I paged the rheumatologist. He has been wondering if she's had G.I. bleeding all along. Her hematocrit level is still low, and this has caused him to wonder "Why the sudden drop when she was doing so great up until now?!?" So, he told me to take her over to her pediatrician's office to have them examine her to rule out if it is a tear (anal fissure) or not. If there isn't a tear, then he wants her to be seen by a G.I. specialist, in which they will probably have to sedate her and take a look inside. Great.

At the ped's office, the doctor (not Mia's regular ped...he was off that day) examined her and said there is a "suspicious area" that was very small, not irritated and the same color as the rest of the surrounding skin. She said it was hard to tell and advised us to wait a day to see if there was more blood. She thinks it would be best if we made the appointment to see the specialist to rule out any G.I. bleeding. This wouldn't hurt, but at the same time I don't want to put her through any unnecessary procedures if we don't have to. :o\

So, we are waiting for the next time she has to go to the bathroom to check to see if there is more blood. And then we will go from there. If it is internal bleeding then we will most likely have to take her off of the naproxen...which is a whole other issue for a whole other blog.

Moving on...

New OT: Ugh...not so sure about this one. She isn't actually an OT either...she is another PT. We already have a PT who Mia loves. We need an OT. Not to mention this new woman doesn't seem to interact with Mia...at all! So, I've voiced my complaint...stay tuned.

Eye Exam: It's that time again. This Friday Mia goes back in to the eye doctor to have them check for uveitis. We are believing for another good report! :)

Current meds/supplements:

Naproxen (7.5 mls; twice a day)
Zantac (2 mls; twice a day)
Ferros Sulfate Elixir (1/2 tsp.; three times a day)
Cod Liver Oil: (1 tsp.; once a day)

PT got moved to Wednesday this week because Mia has/had laryngitis over the weekend so I had to cancel her appointment on Monday. They wanted to put her on amoxicylin for the laryngitis, but I am waiting this one out. She is on enough meds right now as it is. Why add one more to the mix if we don't need to? Her immune system is already at a weakened state - why make things worse?

So, that's this week in a nutshell. Will update everyone soon on the blood issues.

Not Your Average Gluten-Free Menu!

2008-07-02T18:00:00.004-04:00

One of my favorite restaurants out here in the northeast is "Not Your Average Joe's." They have wonderful foccacia bread that you dip in olive oil, parmesean and crushed red pepper flakes. It is very yummy! The atmosphere is very modern and their menu contains a variety unusual and tasty flavors. I have never gotten a bad meal there yet.

Well, one of my dearest friends, Amy, recently told me NYAJ has a GF menu now, and a GF kid's menu at that! You have no idea how thrilled my husband and I are. No idea! We have not been to a restaurant with Mia since she was diagnosed last October because, frankly, why put her through that? Why surround her with things she can't eat and then have to explain to her exactly WHY she can't have those things right now? She's only two-and-a-half. Will she understand? Probably not. And that's not a fun dining experience for her or for us.

And why some people can't understand why we don't dine out as a family right now, we have decided this is what is best for Mia. Not many restaurants have a GF menu. And many GF menus contain dairy or eggs, two other things we are staying away from at this time. We truly believe that being on a GF diet is one of the reasons why Mia is doing so well right now and if that means we need to make some sacrifices by not going to restaurants for the time being then that is what we will do. And it is a small sacrifice to pay for our daughter's health. Yes, we miss going out to restaurants as a family, but I would rather know exactly what is in my daughter's meal so she isn't at risk for a flare-up. We've been down that road before - last November she was at a birthday party and ate a lot of something that she shouldn't have, and the next day should could not walk. Since then, we have been very careful with her diet. We aren't going to make the same mistake twice.

So, three cheers for Amy for this wonderful find! Thank you! Thank you! Thank you! :)

We ARE Overcoming!

2008-06-25T14:00:00.001-04:00

Mia had her scan-o-gram done this morning at NEMC. She did a very good job and hardly even cried! We will get the results back in the next day or so.

In other news, we are VERY HAPPY to announce that Mia's sedimentation rate is back down to normal!! When she was initially diagnosed this past October, her sed rate was very high (41), which was one of the indicators that there was inflammation (arthritis) in her body. A normal sed rate is below 19. Mia's sed rate is currently at 15!! Praise God!!!

Dr. Lopez said her range looks great. She still has some fluid on her left knee and in several of her toes and her right elbow isn't as straight as it should be. But, overall, he was very pleased with the progress she has been making. So, we asked him that since her sed rate is back down to normal if she is in "remission" now, but he said "no" because there is still some fluid on the joints and that there is no way to test if arthritis has left the body or not.

Right now, his main concern is that she still has a very low hematocrit level. He told us it is one thing when your iron level is low, but when your hematocrit is low, as well, this is cause for some concern. So, he put her on a prescribed iron supplement three times a day for the next month. He said that putting her on something like a Flintstones multi-vitamin with iron isn't enough because her levels are so low that they need to "jump start" her levels again to help get her to where she needs to be. He was very thrilled to hear she is eating her spinach, though (see "Going Green"). :)

The other thing that was very low was Mia's ferritin levels. She should be at 15 and she was below 5. So, that needs to come back up, too.

After the appointment, he sent us to the lab to have them do more blood work (EIGHT vials!!!) to test for many different things to find out why her levels are so low. Her three stool samples from this past weekend came back negative for G.I. bleeding, but he said that doesn't mean there isn't bleeding in the lining which could be why her levels are so low. The other reason why her levels may be low is because she could have a blood disorder where her red blood cells are attacking one another. So, they are checking into it and we will get those results back soon.

He said she does not have to wear the leg brace right now, but wants us to continue with the naproxen. Since she is still on the naproxen, he also put her on Zantac to help with her stomach lining just in case there is any future G.I. bleeding.

We go back for a follow-up appointment on 7/23/08 where they will check her levels again. All-in-all it was a very good appointment. At the end of the appointment we spoke with him about the communication issues and he said that from here on out we should just call him directly. And to just call him even if we are unsure about something. Despite the communication issues that occurred this past month, he is a very good doctor. Mia really loves him and he is great with her. We also signed a waiver allowing him to email us with any important information. So, from here on out, even if I get a call from the pediatrician instructing us to do something that Dr. Lopez told him to tell us to do, I am still going to call Dr. Lopez to make sure this is what he wants us to do. Better safe than sorry!

Up next: Since her sed rate is normal now, we are going to try to slowly start adding things back into her diet in the next couple of weeks to see if the cause of the inflammation was diet-related. This should be interesting!!

Thank you to everyone who has been praying for Mia (and us). We are seeing God's Word working mightily in her body. And a very special "thank you" to Mia's dear friend, Alizée, who dropped to her knees in her living room this morning and started to pray for her friend! God definitely heard her prayer!! :)

Pomegranate Juice Could Help Fight Arthritis

2008-06-25T07:00:00.000-04:00

By Kate Devlin, Medical Correspondent
Last updated: 1:29 AM BST 13/06/2008

A glass of pomegranate juice a day could help fight arthritis, scientists believe.

Studies have shown that extracts of the fruit can reduce inflammation in the body, one of the most common triggers of the disease.

The team behind the study, published in the Journal of Inflammation, believe that pomegranate could have the same effect on humans.

If true, it could point the way to a new treatment which could avoid the side effects of current anti-inflammatory drugs, which can include nausea and bleeding in the stomach.

The scientists, from Case Western Reserve University, in Cleveland, Ohio, gave extracts of the fruit, equivalent to a 175ml tumbler of pomegranate juice, to rabbits.

They then tested the level of activity of certain proteins known to trigger inflammation in the animal's blood.

They found that the pomegranate extracts had inhibited the activity of many of the proteins, some by almost half.

It also raised levels of antioxidants, which can also reduce inflammation, in their blood system.

Previous experiments had shown that in laboratory tests pomegranate extract could reduce inflammation in samples of animal tissue, but it was not known whether the fruit could produce the same effects in living creatures.

The researchers believe that the study indicates that eating pomegranate or drinking the juice of the fruit could have a beneficial impact on arthritis, which affects more than 8 million people in Britain.

Tariq Haqqi, who led the study, said such a treatment could also avoid the side effects that can come with long-term use of current anti-inflammatory drugs.

However, he said that further research was needed on how well the extract is absorbed into the blood stream.

Story from Telegraph News:
http://www.telegraph.co.uk/news/newstopics/politics/health/2116833/Pomegranate-juice-could-help-fight-arthritis.html

Going Green!

2008-06-24T07:00:00.003-04:00

Mia's third round of blood tests showed she is still very anemic. And we are still waiting to hear back about the results of the stool samples...

So, since we need to get Mia on an iron supplement immediately, but are looking to go the "natural route," as opposed to giving her a Flintstones vitamins (loaded with sugar and tons of artificial ingredients), we stopped by Whole Foods this past weekend to see if we could find something there. We weren't able to find an "all natural" iron supplement for kids (also a gluten-free, dairy-free, eggless one), so I called our friends, the Antonellis, to see what they recommend. My friend, Georgiann, sent me this great recipe for a spinach smoothie - something she and her family (even the kids!) drink together every other day. Her daughter, Faith, loves it!

Well, low and behold, so does Mia!! I made a huge batch for all of us. My husband loved it so much he asked for seconds! We will definitely be adding this to our evening meal plans (every other night). It is even sweet and tasty enough to spoon feed to an infant. I can't wait to try it out on JJ. :)

I have also started giving Mia rice cereal in the morning which contains a ton of iron (45%). She then takes her calcium at lunch time - you can't take calcium and iron together because the cancel each other out. And then we are doing the spinach smoothies in the evening with dinner.

Anyhoo, here is the recipe for all of you out there who are also in the same boat as we are - fighting JRA the natural way!

FRUIT SMOOTHIES

1 banana
1 cup carrot juice (Costco & Wal-mart have the cheapest prices on Bolthouse Farms Carrot juice)
1 cup other juice (Orange Juice, cranberry, apple juice or grape; grape is the best)
2 cups fresh baby spinach already washed
Frozen strawberries (Costco has beautiful large flash frozen strawberries)
Frozen blueberries (Costco has a flash frozen blueberry, raspberry and marionberry blend that is wonderful)

Add the first 4 ingredients and blend really well. Then blend equal amounts of blueberries and strawberries adding a little at a time. Keep the blueberries frozen to make the smoothie cool and thick. Defrost the strawberries a little so the blender doesn’t have a hard time mixing. Rich with natural sugars, fiber and antioxidants. One blender full makes enough for a full glass for our whole family.

Can be frozen into popsicles for kids.

So, you see, it is possible to get your kids to eat their spinach! ;o)

Our New Friends!

2008-06-23T14:57:00.005-04:00

Here are the pictures of our visit with our new friends, the Antonelli family. Faith, who is a couple years old than Mia, was also diagnosed with JRA at a very year age, as well. It was a very memorable evening with a very wonderful and sweet family (and delicious food...thank you, Georgiann!). I am so grateful that God allowed our paths to cross. We owe so much to this family. They have been a huge encouragement and blessing to us...more than they even know.

We look forward to many more visits with them in the future!

Faith and Mia playing and laughing together.

Faith shows Mia the pictures she
and her sisters made for Mia.

Two new friends. :)

Vacation, A Mysterious Rash, and One Absurd Day.

2008-06-20T12:00:00.001-04:00

Well, we were on vacation for two weeks visiting my parents in Michigan. A lot has happened since then and many changes are in the works. Here's a brief summary to get everyone caught up:

1. End of May: This story is a doozy. Brace yourself.

Three urgent messages were left on our voice mail at home from Mia's rheumatologist the day after her appointment with him on 5/26. The last message told us to call the pediatrician's office immediately for more information. Nice...a very urgent and uninformative message! Apparently, something was low in her blood work and he wanted us to take her back in immediately to her pediatrician to have the blood work done all over again and to bring a stool sample with us. Nothing more was said...to us or to the pediatrician's office. After receiving a message like that, we were a bit concerned.

So, I took Mia in immediately the next morning to the pediatrician's office. I left messages all morning for Dr. Lopez. And heard nothing. Finally, I had him paged around 3:00 p.m. to find out what was going on (why couldn't he have just relayed the information to the pediatrician's office?!?!?!) Grrrr! The first thing he asked me was if I had stopped Mia's naproxen yet. WHA??? Well, if someone had left a message for us to do so then we would have. Sorry...just a little frustrated at this point. Now my mind was racing. He proceeds to tell me there is a possibility of Mia having G.I. bleeding from the naproxen (lovely...he just increased her dosage, too) and that the blood work and stool sample would give them a better idea of what is going on.

Great.

Later on that day, the pediatrician's office calls me back and tells me that she doesn't have G.I. bleeding...she is just anemic (or, as Mia says, "ameeemic"). Phew! All that craziness for nothing. So, they are going to give her an iron supplement to help with that. And they told us to continue with the naproxen.

Which brings our story to the present chain of events which occurred this past Thursday.

I was supposed to receive a phone call from Mia's pediatrician's office the week after her initial blood work to discuss an iron supplement for the anemia. Three weeks went by and I didn't hear anything from them. Granted, we went on vacation for two weeks, during which Mommy's mind went on vacation too...especially to those things which were JRA-related. I needed a break!! So, the Thursday after we returned I called her doc's office to inquire. And this is where the story gets VERY absurd...

The ped. office tells me to start her on an over-the-counter iron supplement.
They then call me back later to say that the Ped. talked to the Rheum. and he wants to know why we didn't stop the naproxen weeks ago? WHA?!?!?!?!?! We were instructed to continue it after the results came back that she was only anemic and there wasn't any G.I. bleeding and that they would call us to discuss the iron supplement the following week.
So, now we are being told by the Ped. who is receiving emails from the Rheum. that we are to stop the naproxen immediately and get her on an iron supplement.
A half-an-hour goes by and I get another call. This time the Rheum. emails the Ped. and says to tell us (OK....WHY CAN'T YOU JUST CALL THE PARENTS DIRECTLY?!?!?!?!) that Mia needs to go in immediately for more blood work and to bring in another stool sample. No further information is given as to WHY we need to bring our child in again for a third round of blood work. Yeah, I was about to blow at this point.
So, I tell the ped. office that before I bring her in again, I need to speak to the Rheum. to get more information as to WHY she needs to come back in.
I get on the horn with the Rheum. who I have to have paged because "he is 'off site' today." He calls me back. It's not a pretty conversation...so I'll leave it at that. Bottom line, he tells me that Mia's second round of blood work also showed that she still has "lowered hematocrit levels," which means there is still a chance she has G.I. bleeding. Great...we've had her on naproxen for the PAST THREE WEEKS since we were instructed to continue it!!

He then proceeds to tell me they need to do a round of THREE tests in order to rule it out, in which case, we need to bring in THREE stool samples. That's funny, the ped. office told me on the phone that it was just ONE stool sample. And I love how we are hearing about this for the very first time....three weeks after the second round of blood work. At the end of our conversation, I asked him what we are to do about the naproxen and he tells me to keep her on it. OMG! After all of that...after being scolded on the phone because we didn't take her off of it three weeks ago...he tells me to keep her on it.
So, I took Mia in for the blood work this morning and dropped off round one-of-three of the stool samples. Despite the fact she was not to happy to learn that she was going back in again for more blood work (she is WELL aware now of what that means!), she managed to make light of the situation. I overheard her telling her father that she was going back to see Dr. Maddox and "the beetle!" I told her, "No, Mia. It isn't a beetle. It is a needle!" She tells me, "No Momma...it's a beetle." Too funny!
We have an appt. with the Rheum. on Wednesday (6/25) where we will all sit down together and have a nice heart-to-heart. :)

Lesson learned: You are your child's advocate. You are their voice. It doesn't matter if their doctor(s) get annoyed by your phone calls. It doesn't matter if they get impatient when you have them paged when they are "off site" (golfing? hmmm...perhaps.) so you can get to the bottom of things. What matters is that you get the correct and accurate information the FIRST time around.

And to think, we wouldn't have found ANY of this out if I hadn't called to inquire about an iron supplement. Come on people...do your jobs!!

Moving on...

2. Mysterious Rash: Two and a half weeks ago, after wearing her brace to bed one night, Mia woke up with a rash on the inside of her left knee...the joint that is affected. It is right on the spot where she has some boney overgrowth of cartilage due to the JRA. At first I was hoping it was just a heat rash of some sort, but we've put neosporin on it and hydrocortizone and neither one of them have helped. Her rheumatologist and pediatrician have been asking us since her initial diagnosis if Mia has had a rash or fever because those are some of the symptoms of systemic JRA.

I know there are several of you who read my blog who have children with JRA. Have any of your children ever had a rash?!?! Any help or insight would be greatly appreciated. Mia has never had a fever with the rash....just inflamed joints and now this "mystery rash."

Her rheumatologist told me that he believes it is definitely related to the arthritis, but he will know more when he takes a look at it on Wednesday.

3. New OT: I am very sad to announce that Mia's OT, Kelly, will not be able to continue her services. Kelly is due soon with her first child (hooray!!) and has decided to not return to work after the baby is born. Mia will be very sad to find out that Kelly won't be coming to visit her anymore, but we are very happy for Kelly. She was a wonderful OT and Mia loved visiting with her.

On Monday, Mia will be meeting with Stella, her new OT, for the first time. First off, I just want to say that I LOVE her name!! I am hoping she is as fun as her name is! Ha! :) During this meeting, we will be discussing Mia's transfer from Early Intervention into the public school system's services starting in December 2008. Mia will be three-years-old at that point and E.I. does not provide services past the age of three.

4. PT: Mia will still be meeting with Mary on Mondays. Mia LOVES Mary. :) You know your child has a great PT when they go away on vacation and all they can talk about is going to see their physical therapist! :)

5. Overall: We had a great vacation! We got to have dinner one night with our friends, the Antonellis, at their house whose daughter, Faith, had JRA. It was so much fun! They have three adorable, little girls - Grace, Faith and Hope. From the very first moment that Mia met Faith you would have thought they were sisters. These two little girls are so much alike. It was amazing. I just sat and watched them play together and I could have cried - two beautiful little girls with such amazing and bubbly personalities fighting a horrible chronic illness. And it really made me think - I truly believe that God gave both of them their delightful and upbeat personalities for a reason. He knew before they were born what they would face early on and He knew that by giving both of them "merry hearts" it would be like medicine to their bodies (Proverbs 17:22). God's Word is working in Mia's body and in Faith's body! :)

They have such a beautiful and blessed family and it was great to sit and talk with them while the kids played. And JJ loved being around all the girls!! :) I will post pictures soon of our visit with them. We look forward to many more visits and play dates with them when we are in town.

6. Up Next: Mia has her "scan-o-gram" scheduled for next Wednesday morning at 9:00 a.m. She will be meeting with the rheumatoligist afterwards. He spoke with Mia's pediactrician today and said that he believes that the rash is related to the JRA, but won't know until he takes a look at it. Please continue to pray for Mia and agree with us for a good report next Wednesday.

Visit to the Rheumatologist...

2008-05-21T17:00:00.006-04:00

So, today we got the kids up waaaay early so we could get Mia into Boston for her 9:00 a.m. appointment. But, getting there early was so worth it because this was the first time EVER that we didn't have to wait for an hour in the waiting room. Apparently, no one makes appointments that early...or at least not today. We were able to go straight to the room and wait for the doctor. Nice!

The doctor took a look at her joints and, while he wasn't as impressed as he was the last time we saw him, he definitely agreed she is better than she has been in the past. Although, he said he didn't like all the fluid and swelling he saw on her joints...specifically her left knee. He said what he always says, "I am greedy. I want her at 100%." Which I had to laugh at this time because he says this EVERY time. In my head I was like, "Yeah, doc! We do, too!!" But I understand what he means...

We also discussed how her left leg is now longer than her right leg. When I told him this, he said, "Are you sure it is her left that is longer? Because back in October it was her right leg that was longer than her left." I told him that is what the PT told us after she took measurements of it...and, from what I can see with my own eyes, her left is definitely longer than her right. So, he had her lay down on the table and he measured her again. Sure enough, her left is longer. So, he wants to see her in four weeks from now and wants her to have a scan-o-gram (ha ha...sorry, I think this term is very humorous!). Basically, all that means is she is going to have another x-ray from her waist down. So, the next time we come in she will have that done first and then we will meet with the doctor. And her Daddy will be going with her for the x-ray because he is much better at it than I am (hey! everyone has their weak points!!). So, hooray. Another looong appointment. We made sure we snagged an early time slot, though! ;)

Right now, he said he didn't want to switch her to a "stronger level of medicine." He never said the "s" word, but Jay and I knew he meant steroids. Instead he increased her naproxen from 5mls twice a day to 7.5mls twice a day to see if that helps...and because she is bigger now than she was several months ago. I was hoping that we'd be able to start weaning her off of it, but I can't complain. At least she isn't on steroids. Thank God!

We brought her brace in with us today because it is completey worn out and the velcro doesn't work anymore. She has worn it to bed every night since she got it in December, but I had her stop wearing it the last month or so because it wasn't doing what it is supposed to do - keep her leg perfectly straight at night while she sleeps. When I would go in her room in the morning, only one strap would be on...if any. So, the doctor had us go back down to the "Brace Shop," which is located in the lowermost parts of the hospital near the boilers in the basement (a very creep place!) and they measured her for a new brace. Her old brace was a size 6, so they gave her a size 10 today because she is now 30 lbs. and almost 3 ft. tall! They said we should get a new brace every six months. Good to know.

She had blood work done today, as well. I could hear her screaming from the waiting room - not fun! She did a good job, though. They are testing for numerous things and we should have the results back soon.

He also wants us to look into water therapy for Mia. We talked about this in the past with her OT and PT, but now it is coming from him. So, we are going to look into getting Mia into another therapy program. But, I am excited about this one because, as the nurse told me today, they have seen huge results from their patients who are under 3 years of age who are involved in water therapy. And I know Mia will just love it.

All-in-all, today's appointment was a good one. And, as always, Mia was a trooper! While I was hoping for a more positive response from the doctor, I can't complain. We are continuing on the same path that we have been on for the last six months and we are standing strong and believing God that this will soon be over for Mia. She isn't going to have to wait until her teenage years to see if the JRA will go away. It is gone now, in Jesus' name!!

And Mia was thrilled about her new brace! She told everyone about it. I mean everyone - the people in elevator, the lady at the front desk, the people in the lobby. So, tonight we will decorate a new brace and put new Charlie and Lola faces on it.

Stay tuned for another good report when we go back to see the doc at the end of June.

PT Update

2008-05-19T17:00:00.001-04:00

Well, this week is the week. We head into Boston on Wednesday for another looooong appointment with Mia's rheumatologist. More blood work. More x-rays. More waiting. Please continue to pray for Mia this week. Today in therapy her knee was much more swollen than usual and she was still at -3 degrees (although, this is MUCH better than the -20 degrees she was at several months ago).

Also, there was much resistance in her right arm when Mary tried to get her to do certain exercises today. She has a very hard time straightening her arm out and it is really stiff. This is also affecting how Mia does things with her right hand, like, picking objects up or even simple things like dumping out a cup filled with water. Holding her palm out flat (like when I squeeze soap into her hand) has not been possible yet because her elbow is preventing her from doing what she should be easily able to do.

Aside from all the current challenges she is facing, we are believing for another GOOD report on Wednesday when we meet with the rheumatologist.

Also, please pray for that the length of Mia's legs will even out so they are the same. She wasn't like this several months ago, but her therapist says this is very typical of JRA - usually the leg that is most affected tends to grow faster than the other leg making it more difficult to walk.

That's it for now....more on Wednesday.
Mia's Momma :)

PT Update

2008-05-12T12:04:00.007-04:00

Today at therapy...

Mary noticed that Mia's knee is more swollen than usual.
Mia had a very difficult time doing the stairs exercise and refused to go up the stairs using her left leg first. The same thing with coming down the stairs...she refused to go down the stairs using her right leg first. It seemed like her left leg was really bothering her today.
Mary applied moist heat to her left leg and massaged her knee which allowed for a better extension, but Mia was still protecting her leg during the exercises.
Mary measured Mia's knee today and she is around -3 degrees. At her last appointment with the rheumatologist, he said the goal is not only for Mia's leg to be completely straight, but when she is sitting down with her legs together out in front of her that we should be able to lift her left foot up so that it is off the floor. This is something all kids can do. Mia can do it with her right leg, but not with her left because of how the JRA is effecting her knee.

So, these are the things we need to work on with her...and what we need to pray about. Mia goes back next Wednesday for another appointment with her rheumatologist. This will be a longer appointment because they are going to be doing more blood work and checking for any JRA markers in her blood and checking her sedimentation rate. They will also be checking for traces of mycoplasma in her blood.

Will keep you posted...

Six months later.

2008-04-29T05:02:00.007-04:00

So, here we are. Six months later.

As I look back and reflect over the last six months, I can finally be honest - in the beginning, I felt so alone through all of this. Besides having an excellent resource - and now friend - who my mother recommended to me, we were on our own. I had never even heard of JRA before. The next thing you know I am on the phone with the doctor who is telling me about Mia's white blood cell count and sedimentation rate being too high and that her immune system was attacking itself, causing inflammation in her joints. When he said, "She has JRA" I could feel my head spinning. At the time, I had a three-month-old baby at home who needed me every moment of every day and now my little girl would be needing me now more than ever. It was overwhelming.

The last six months have been difficult and challenging. And I've learned a lot along the way. It was especially hard in the beginning. A friend of mine put it this way, "There is a period of grief in the beginning; a season of sadness in knowing that your child is in pain and and has been diagnosed with something horrible. But, after that period of grief passes, and it will pass, you become strong again. And then you begin to fight."

This has stuck with me.

While I know there are many more horrible diseases out there (which I remind myself of every day and count my blessings), it is not fun, nor is it fair, for your child to suffer in any way. A day hasn't gone by where I didn't wish it was me instead of her. I now understand what it means to have a "mother's love."

So, now we are in a new season. More prayer. More research. More education about JRA and how we can get to the root of this auto-immune disease. If you treat the root then the weeds (allergies and sensitivities) disappear. It is our prayer that God will reveal those "hidden things" to us so we can help our daughter overcome JRA and lead a normal and healthy life.

During these last several months of research, there are many things I now wonder about ...and regret. For example, I wish I had educated myself more about breastfeeding. Perhaps I could have prevented her from getting JRA? Apparently, children who are breastfed have a lesser chance of getting JRA. Had I known that beforehand, I would have done it longer. For both my daughter and my son. But, I try not to beat myself up too much about it. :)

Mia is still on a "special diet." Though, as she is getting older now, it is getting harder to explain to her why she can't have what the other kids are eating. And I am sure it will get even more challenging as her brother starts to discover new and different foods. But, I am convinced this diet is what has helped her the most (despite what medical professionals say) and we are sticking with it for now.

Recently, I stumbled upon a couple of articles/blogs that only confirmed what I already knew in regards to the connection between JRA (and RA) and diet. It is encouraging to know there are others out who have tried what we are doing and it has improved their quality of life, as well. Here are some of my recent findings:

As stated in my initial post, the purpose of this blog is a journal for myself - a way for me remain strengthened and encouraged. It is also a way for me to keep my family and friends back home updated with Mia's progress. Six months later, this blog has become a way for me to track what has worked and what didn't work for Mia. Through this journal (and food journal), I can look back and see where she was at several months ago and the challenges she was facing with her joints and what we/her therapists/her doctors did to help ease the pain she was experiencing.

I am also blessed to know this blog has helped others. I greatly appreciate the emails I have received from people who are also going through their own challenging situations. Please know I pray the same prayer for you that I pray for my daughter...

"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)

New Allergy-Friendly Foods for Kids!

2008-04-24T12:01:00.007-04:00

Cherrybrook Kitchen has just made my life so much easier. This summer, they will be coming out with a new line of GF, DF and egg-free mini cookies and ready-to-spread frostings - just like good ol' Duncan Hines, but better for you. :)

You can't imagine how excited I am about these new products! Now that Mia is in school twice a week, there are birthday parties and celebrations almost every month. Which means, I have to run out to Whole Foods or Trader Joe's, buy a box of allergy-friendly cake mix ($4-5) and a box of frosting ($6) and whip up a treat that my daughter can enjoy while all of her other friends are eating cupcakes made by a local grocery store (loaded with who knows what in them!) that probably cost $1.99 for a dozen. Grrr.

The biggest challenge with these cake mixes and frostings is I have to substitute a ton of stuff in them so they are "okay" for Mia to eat. I can't just dump the cake mix in a bowl, add the liquid ingredients and then bake it for 12-15 minutes. I have to substitute coconut oil (which looks like Crisco, so I have to melt it before I add it) for vegetable oil, rice milk for regular/soy milk, and if the recipe on the box calls for an egg or two I have to mix up some Ener-G Egg Replacer. Same deal with the frosting. All this for one, perfect, tasty cupcake for her to take to school or a birthday party so she won't feel excluded. Don't get me wrong. I am happy to do it for her and I don't ever want my daughter to feel left out, but it is a lot of work and I'd rather be in bed at 11:00 p.m. at night than playing around with egg substitute in my kitchen to get the batter to just right to make one little cupcake. Now you know why I dread going to birthday parties! Well, for that reason and because Mia is at the age where she is starting to realize she can't eat what everyone else is eating and it makes her very sad. Literally. Try explaining to a 2 1/2 year old why she can't have what all her little friends are having. It's not fun.

So, "thank you" Cherrybrook Kitchen. You've made this Mommy so very happy!

For those parents with kids who have food allergies, check out this awesome newsletter I subscribe to by Kids With Food Allergies. They always have helpful information, recipes, or ideas in their newsletters. Besides the Cherrybrook Kitchen products, they just posted a list of other allergy-friendly foods that are currently available or are about to come out soon. :)

New Tasty GF Treat!

2008-04-23T16:28:00.009-04:00

In the effort to find an ice cream substitute for Mia during those hot summer days, I discovered a new tasty GF and DF treat at Trader Joe's - Sharon's Sorbets.

They come in a variety of flavors, too! And they are all natural - no artificial ingredients - and are made with pure, unbleached cane sugar. Also, most sorbets are made with milk, but this one is completely dairy-free. And they are so good and very inexpensive - I believe I paid $1.99 for a pint at TJ's. Not bad!

Mia is very happy with her new "ice cream" treat. Hooray! :)

Speaking of Eyes...

2008-04-16T10:14:00.007-04:00

Mia has conjunctivitis! BLEH!

First, our entire household came down with bronchitis. It has taken over a month to get rid of it. Now this. I guess it is pretty contagious. Mia hasn't really been anywhere besides the eye doctor's last Friday. I am assuming this is where she got it. Thanks, doc. Thanks a lot.

I have bleached all of the kids' toys, sprayed Lysol all over the house and gone through several bottles of Clorox Anywhere Spray (my best germ-fighting friend). Guess I need to repeat the whole process once again.

Mia does pretty good about taking medicine (considering what she has been through the last six months), but this is the worst. She has never fought us on taking medicine before, but Jay and I practically have to sit on her to get the ointment in her eyes. There are many tears. I feel so bad for her.

So, stay tuned. This may be our SIXTH week of missing church. Lord help us!!

Checking for Uveitis...

2008-04-11T14:32:00.002-04:00

Mia had her third eye appointment today since she was diagnosed six months ago. When we arrived, she already knew the drill - wait for the nurse to call her back, sit on Mommy's lap while the put drops in her eyes to dilate them, head back to the waiting room for 15 minutes to wait for them to dilate, head BACK into the examination room to meet with the doctor to have her look deep into her eyes to check for inflammation (uveitis) and scarring, then head directly to the toy chest in the lobby to pick out a special treat. Mia did great today - much better than she did six months ago. This was the first time we didn't have to hold her down while the doctor looked in her eyes. She sat there very patiently and didn't even fuss! Jay and I were so proud of her.

The doctor reported there isn't any inflammation in her eyes - in the front or in the way back. Also, there isn't any scarring from any past inflammation she may have had. This is all very good news! She said that everything looked perfect! Praise God! :)

She goes back again in July for another check up. She will be going to see the eye doctor every three months until she is 10 years old, or so I have been told. We are believing she won't have to for very much longer. :)

"...but in humility consider others..."

2008-04-09T15:56:00.005-04:00

I stumbled upon this site via two different blogs that I read.

I felt I should share it with you...especially with those who pray.

Bring The Rain
(www.audreycaroline.blogspot.com)

When you get a moment, please take time to read through the posts...and pray for this family. It is a heartbreaking story. I can't imagine walking the road this mother has walked.

I pray for strength and peace for them. May they feel God's loving arms holding them close during this difficult time.

Postponed...

2008-04-08T12:42:00.006-04:00

Mia's appointment with her rheumatologist was postponed for another three weeks. Apparently, she was supposed to have the chicken pox vaccine three weeks prior to this appointment and we were just told that this morning. Lovely. The reason being is because there are side effects after you get the vaccine (rash and fever) and they need to wait until that subsides before they can do the necessary blood work.

So, after being on the phone all morning with her rheumatolgist and her pediatrician (and my doctor's office because I have to go back AGAIN for this horrible virus I can't seem to kick), she will be getting the vaccine this week and in three weeks we will be heading back for the appointment she was supposed have today.

As I mentioned in a previous post, they will be doing blood work to check Mia's erythrocyte sedimentation rate (ESR), which, at her initial diagnosis, was way too high (40), and her white blood cell count. And, at our request, they will be checking for mycoplasma in her blood. They will also be checking for "markers" to see if Mia will be getting the chicken pox.

You may ask, "So what's the big deal if she gets the chicken pox?" Well, because JRA is an autoimmune disease it has caused Mia's immune system to be at a weakened state. If she got chicken pox it would weaken her immune system even more. So, the doctor is just thinking ahead. He wants to make sure that variable is out of the equation.

So, we wait...some more. As always, I ask that you continue to pray for Mia and for us. Also, please pray for her legs - that the length of her left leg will be the same as her right. This just gives the doctor another reason to suggest steroids because they will slow down the growth of her left leg.

Thank you. :)

PT Update!

2008-04-07T11:59:00.008-04:00

Good news: Mia did great at her therapy session today. She wasn't favoring either leg and was very balanced when walking on uneven surfaces and with squatting and bending. Mary was quite impressed! Also, her elbow was straighter today. She is still having problems turning her hand over so that her palm is facing upward. Also, when she is picking up something with her left hand, she always keeps her right arm bent. It is really odd. Probably just a bad habit or way she is protecting her joint, but she does it consistently.

We need your prayers!: In some cases, JRA can cause the leg that is most affected to grow faster than the other leg, causing one's balance to be off. This can also result in scoliosis later on in life. Up until now, the length of Mia's legs have been exactly the same. Mary measured the length of Mia's legs today to make sure they were still even. Her left leg is now longer than her right. I could visually see it while Mary was examining her. She told us we need to bring this up to the rheumatologist tomorrow during her appointment. For right now, Mary suggested we just keep an eye on it. However, she said if the left leg continues to grow faster than the right then she suggested we put a shoe lift or insert in her right shoe to even out her length and make her more balanced. She said to check with the doctor tomorrow about this because she said most of them don't like to do this, but she has seen great improvement in kids with JRA by just putting a lift/insert in the other shoe.

Mary said she had be en expecting this would eventually happen to Mia and that she has been watching for it. However, we know this is not something that is too big for God!! Mia has come so far since October...this is just another obstacle in the way on her journey to complete and total health!

So, you may ask, "What causes the leg to grow faster than the other?" Well, it is the same reason why her big toe started to grow faster than her other big toe about a year ago - too much blood is pumping to the affected joint causing it to grow at a faster rate than the opposite and unaffected joint.

So, please continue to pray! Also, Mia goes in to see the eye doctor this Friday to have them checked. We are believing and expecting a good report!!

As always...I'll keep you posted. :)

OT Update and Other News

2008-04-01T20:29:00.006-04:00

Mia's OT appointment was at her school today. I am still waiting to talk to her therapist to see how everything went, but it sure was nice of her to stop by the school today to meet with Mia. Mia loves Kelly and enjoys her visits with her!

In other news, one week from today we will be heading back into Boston...again. Another appointment with the rheumatologist. I can't believe two months have come and gone since her last check-up. It will be interesting to see what he has to say. Everything has been the same since her last appointment, however, her right knee has some swelling on it now and she has been limping on it a bit. So, we will see what he says and what the next step is for her. We are hoping to start adding things back into her diet this summer to see what has been the cause of the flare-ups and inflammation to her joints.

Also, next Friday we take Mia back to the eye doctor for her three-month checkup. She goes every three months to have her eyes examined for a disease called uveitis (inflammation of the middle layer of the eye, which, if left untreated, can lead to blindness). JRA can cause uveitis in some cases...and girls are more prone to get it than boys. The last time we went the doctor just peeked in her eye (well, we had to hold Mia down while she was kicking and screaming so the doc could get a good look inside). This time, she will have to have her eyes dilated. She had this done back in October for the first time. They dilate both of her eyes in order to look way into the back of Mia's eyes to check for inflammation. It is certainly not a pleasant procedure for a two-year-old. :o/

Also, Mia will be going to see her pediatrician to get a shot to prevent her from getting the chicken pox. Her rheumatologist requested this so if Mia were to get the chicken pox and they had to treat her with some other medication other than what she is currently on that it wouldn't weaken or worsen her immune system even more than it already is. So, in essence, this vaccination will be protecting her immune system.

So, next week is a big week for us. Please continue to keep Mia in your prayers as we stand strong and believe God for a miracle for our little girl! We are believing for a normal, healthy life for her with no inflammation in her body and an immune system that functions the way God created it to with no malfunctions or disease.

PT and OT Updates

2008-03-26T10:19:00.005-04:00

When they said on the news, "The cold season is upon us" they weren't kidding.

We, myself and my two babies, have been "fighting the good fight" for the last week or so. It began with Mia last Monday afternoon - a fever and sever coughing which turned into viral bronchitis; two days later, JJ came down with similar symptoms and a ear infection; two days after that, they lovingly passed it on to their mother. Hooray.

So, needless to say, therapy appointments have been put on hold for now until everyone is feeling better again.

And, as usual, Jay was spared from all ailments. :)

Have I mentioned how much I love bleach?!? I've bleached everything I can get my hands on. Our poor pug, Irving, ran for cover when he saw me coming for him! ;o)

So, we shall start fresh next week with all appointments and therapy sessions.

PEEP this!

2008-03-19T13:16:00.008-04:00

An early Easter package came in the mail today, addressed to "Mia and family." Enclosed was a VERY special treat - marshmallow Peeps! At first when I saw them I thought, "Oh no! She can't have Peeps! What am I going to tell her when she asks if she can have one?"

Wellllll...as it turns out, Peeps are GLUTEN-FREE!! Hooray!

And I should have known...Gramma (pronounced "Grumma") would have never sent anything that wasn't an "approved" treat for Mia. :)

PT Update

2008-03-17T11:26:00.003-04:00

During today's session, Mary noticed that Mia has fluid on her RIGHT knee now. So, we are keeping an eye on it. Mary took measurements right above, on, and right below her kneecap and well see what happens in the next few weeks. When Mary pressed on the center of Mia's kneecap, you could see the fluid ooze out right above....very squishy and puffy. So, this is something new for us to pray about.

Other than that, she did well during her session. During the exercises, she initiated more with her left leg (i.e., climbing stairs, stepping over hurdles, taking giant steps on the colored mats on the floor to get a good stretch out of her left leg). So, that was very good! Mary said her joints were very fluid today with minimal resistance. Her elbow still needs some work, but it is much straighter than it was several months ago.

Overall, it was a good session. :)