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.