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Introducing my tribe

I am a mom to 2 wonderful boys. A is 16 and G is 19. They both have Autism. G is on the high functioning side and A is lower functioning.

G was always on the skinny side. I was a skinny kid, and he was on ADHD stimulant meds for several years. His ped and I weren't happy with how skinny he had gotten but it hadn't raised any red flags yet. Generally, he was a very healthy kid. In the end of May 2007, he was attending a week long special need day camp. After the third day, he mentioned his stomach hurt. I gave him some ibuprofen and figured he had picked up a stomach bug at camp or was wearing underwear that was too small. Saturday, he was still hurting and the pain had spread to his right side. I thought he had an appendicitis and rushed him to the ER. They did a CT scan and saw that the lymph node next to his appendix were inflamed and sent him some. On Sunday, the ER called and said we had to come back. They had found some bowel inflammation. He was admitted to the hospital for over a week and half. They did no testing. The pain was getting worse. They insisted it must be a virus. Finally, seeing that nothing was being done, his ped had him discharged.

His ped ran a pile of bloodwork. His sed rate and CRP were very elevated. The GI didn't want to see us for a month +. He finally hit the magic number of 4 loose bowel movements in one day, and the nurse squeezed us in sooner. When the Gi actually looked at all the tests, he admitted my son to the hospital on 7/2/07. They administered size prep via and NG tube, and did the colonoscopy on 7/3/07. The dr came out and told us it was Crohn's. He had lots of bad areas, and they couldn't even get close to the small intestine, due to swelling and inflammation. He gave me color pictures of the horror show. They also did an endoscopy and found ulcers in his stomach. They kept him in the hospital for another week and put him on a strong dose of solumedrol, and started him on 6MP.

We kept having to go to the ER. He had bleeding, diarrhea and severe pain. He was dropping weight by the day. I was scared he was going to die at this stage. Finally, after trying maximum strength prednisone, and a host of other meds and seeing how sick he was, they admitted him to the hospital again. This time, they finally did a small bowel follow through. He was a mess! He had a 6"-9"stricture in his small intestine that was barely the width of a string. The Gi dr told me that normally they would do surgery and remove that section of bowel, but he was too sick everywhere else. One of the phrases a mother never forgets hearing.

They started him on Remicade, and finally discharged him from the hospital after 3 weeks of being admitted that time. They encouraged him to remain on a low residue diet.

Remicade was a miracle drug. We were able to wean him off the prednisone. He was gaining weight and feeling better. Life returned to our version of normal. Until 2/13/09.....remicade infusions had gotten normal. He was settled into a recliner, playing video games while getting his infusion. I was about to fall asleep on the couch next to him, when m child made the scariest sound I have ever heard. I had barely sat up, bleary eyed, and stared as my child's whole body convulsed. He had his first grand mal (tonic clonic seizure). No more biologics for him.

We switched him to methotrexate, folic acid, apriso, and eventually added entocort. We have been trying to taper him off the entocort regularly, but have had no success.

His last colonscopy showed no active crohn's, but his CRP remains between 1-2 (10-20 non US). It occasionally gets as high as 4.

Now we are trying to wean G off the entocort. We have an appt with the adult GI to discuss EN as an option to help his wean off the entocort.

We also finally got the ped GI to listen about his brother, A, and his GI issues last week. A is 6'2" and 230lbs, so the drs have been convinced that it culdn't be Crohn's, even though his prometheus blood test in 2008 tested positive for Crohn's. We have been dealing with random vomiting, night time pica, massive quantity and diameter BMs ( like 3" wide and a foot long). They have tried to treat the vomiting as reflux and the BM issue as constipation. It isn't constipation and I don't think it is reflux either. A has difficulty communicating, so I finally asked him the right question. Where did your stomach hurt before you ate the toy? He pointed right above his belly button and said right here. The GI finally listened and ordered a bunch of blood tests, an abdominal US, and abdominal x-rays. If they don't find an answer they will do an endoscopy/colonoscopy. So the GI journey begins anew...

And that's our epic tale of my boys' GI journeys. Thanks for this wonderful forum. It has been a great help as I try to understand both boys' issues.
 
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