I decided I wanted to add to my post. It's a descript
ion of our journey over the first 2 years after my son's diagnosis. It will help you understand why I said it may be best to do Remicade.
After my son was finally diagnosed at age 10 (he'd had growth failure since he was 7), we had a ped GI who was very passive. She put my son on Pentasa and waited. After a couple months his hemoglobin had dropped to 8 due to bloody stools. Her response was to start him on oral iron and rx prednisone.
Instead we started him in a short (6 weeks long) phase 2 clinical trial of Leukine, which had showed great promise in treating CD in the phase 1 trials. It did not help at all so back we went to the regular ped gi.
My personal experience with prednisone plus my own research (done pretty much in a vacuum) led me to want to try enteral nutrition before putting my 10 year old on prednisone. Our ped gi was opposed to this plan, really opposed. She insisted it would not work and I was putting him at risk of perforation, etc.
My son's CD presentation is atypical. He gets severe constipation - to the point that his intestines shut down. After his 2nd hospitalization for clean out I insisted that we be allowed to try enteral nutrition. The ped GI gave in and said OK. But she had no idea how to do it. I finally found a dietician who knew about
doing enteral nutrition with bariatric patients and she helped us a lot.
I had also found Dragonpack by then and got a lot of support from other parents who were having good success with enteral feeding.
Before the enteral feeding, my son's colon and rectum were a mess. He had bleeding ulcers in his small bowel. He had perianal disease.
After 2 weeks of enteral feeding his ped GI insisted on doing a sigmoidoscopy. If he was worse she would insist we start prednisone (she was sure this would be what happened). So she did the sig. His lower colon was visibly improved - like 80% improved. He still had apthous ulcers and obvious inflammation at the places where his disease had been the worst but no
open ulceration. There was no denying his intestines showed a remarkable improvement.
She was stunned. My son continued the enteral feeding for 8 weeks then she repeated the sig. His lower colon and rectum was beautiful. One apthous ulcer. His perianal disease had improved a lot too.
But my 10 year old son was struggling. He could hardly stand to watch TV because of the food commercials. We had stopped eating in front of him or even preparing much food in the house because he got so upset.
So at that point we started a food re-introduction plan. We started with 2 foods that my research had suggested were well tolerated and unlikely to cause a flare. White rice and thoroughly cooked pears.
After 2 weeks of that he was having tummy aches. Then the constipation started. She did a new sig and his colon was inflamed and there were many new apthous ulcers. His labs had worsened considerably.
I was so sad. The ped gi was sad too but she told me I had changed her opinion about
enteral feeding 180 degrees. She said she was going to recommend it to her adolescent patients who were not responding to anything except prednisone and thanked me.
So I gave in and we put my son on prednisone and 6-MP. The prednisone was horrible. He would have to have life-threatening acute symptoms before I agreed to give him prednisone again for more than 4-5 days. And it took months to wean from the pred. The 6-MP helped but the severe constipation continued to be a problem.
Not long after starting the 6-MP we were forced to change health plans and had a new ped GI. He insisted my son was in remission (despite many signs that my son's remission was only partial) and my son's constipation was a sign of a motility disorder.
After many invasive tests they could find nothing wrong to explain the constipation. They wanted to send my son for biofeedback training that involved putting sensors on his anus so he could learn how to tell when he needed to poop. I said - enough. NO more. We increased his Miralax to 5 doses a day I think, added a laxative, put him on a high fiber diet.
But the constipation continued.
After my son was hospitalized with obstipation (his intestines had completely shut down) for the 3rd time in 6 months, this ped GI said he wanted to do surgery and give my son a cecostomy. The ostomy would be used to flush the colon daily, getting rid of the stool as if you were giving an enema from the top.
He said it would be more convenient for everyone... and implied that we were not actually giving our son the medications that had been prescribed or he wouldn't be having these problems.
I think you can imagine my reaction to that.
I took my son for a 2nd opinion to a prestigious ped GI at a major teaching institution who specialized in treating both IBD and constipation/motility problems in children over the objections of the local ped gi. He even told his staff not to send my son's records as I had requested. I discovered this the day before we left to see the 2nd opinion doc. Fortunately I had gotten a lot of my son's records as we went along and had them to hand carry with me.
The 2nd opinion verdict - my son was not in solid remission and needed to go on Remicade or Humira (which was in clinical trials). My son needed further tests that no one had done (a small bowel follow through for instance) to figure out the extent of his small bowel involvement. If we didn't get the perianal disease under control soon his opinion was that there would be abscesses and fistulas - if there weren't any already.
We came home and I got into a huge fight with our local ped gi. It got pretty ugly. I insisted that the additional testing recommended by the 2nd opinion doc be done over their objections. The docs here continued to insist my son was in good remission and there was no need.
They finally agreed and the results of the small bowel follow through showed that my son had extensive active disease in his small bowel with multiple inflammatory strictures including one that was at least 6 inches long.
The next day I told our pediatrician that we were going to a different ped gi at a major medical center 100 miles away rather than the one we had been seeing at our local "major" medical center. I told him I would do whatever was necessary to appeal any denials from our insurance. I also told him I was filing a complaint against the local ped gi that day.
I had one final, brief phone conversation with the local ped GI and the man didn't even have the guts to apologize to me.
The following day we had medical group approval to go to the new ped GI and 2 weeks later my son started Humira as part of the clinical trial. It took about
3 months on Humira (which is now recognized as typical) for my son to go into what appeared to be complete remission. His perianal disease had vanished as if it had never been. His constipation was gone too. His labs were almost completely normal and eventually everything came into normal range. He started to grow.
So that is the context I bring to the table. Will your experience be the same if you continue with dietary interventions as the sole treatment? That is impossible to know. Your son may well respond with solid remission or have a strong response to other meds.
Follow your instincts. Do what you think best and know that you are making the best decision you can with the information available. If it doesn't work out or things go wrong, you will deal with it then. And again you will make the best decisions you can.
son now 15, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease
sister, late 40's, short bowel syndrome, TPN w/lipids and vits, severe malabsorption, poor fluid retention, severe complications from malabsorption including retinal damage.
Post Edited (rlsnights) : 1/2/2011 3:09:53 PM (GMT-7)