When There Aren't Any Answers

"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

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

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!

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

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

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

Catching My Breath

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.