Two Kids. SAME Diagnosis.

"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.

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...

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??

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

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!

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

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

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...

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

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

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.

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

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

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...

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!

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

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

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?

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

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!)