Needing advice for 15 year old son

<!--159564{-->I am looking for any ideas that you may think will help before I call the Dr. back. The Dr. actually told me that we could try Tysabri or maybe we should just take him off of all meds and try going hollistic. I am thinking that his biopsies last time showed very high eosonophil counts which could indicate an allergy. If we tried elemental and did a methodical food re-entry, would he be allergic to the formula? Steven is currently taking a double dose of Remicade every 6 weeks. He is also on 9mg Entocort. His sed rate is elevated and he feels sick and doesn't have much of a life. He does have some improvement for a few weeks after his Remicade dose, so I am thinking that it is helping even though it is not inducing remission. He is not nearly as sick as he was pre-diagnosis, but he can't even go to Walmart without feeling ill. We just don't know what to do at this point, but I am very afraid of trying the Tysabri. I am sorry that I have rambled so much. Any advice at this point will be appreciated and considered. Laura G./ Steven & Jenny/ both CD   P.S. He is also steroid refractory <!--159564}--><!--1226951270.54e38f92-->

Since you mentioned eosinophils in the biopsy--have his doctors considered that he might have eosinophilic colitis/enteritis? It is a distinct disease, separate from Crohn's/UC. Just mentioning.

Is his Crohn's in the colon only, ileum and colon, etc.? I assume you already did the elemental and elimination diet? And is he still currently using the elemental diet for some or all of his daily calories?

If he has colitis only, the elemental diet may not be effective. It is more effective when there is also disease in the ileum.

Maybe before going to Tysabri you could consider Remicade + MTX or imuran, Humira, cimzia, or other options? If you think the Remicade is working but just not quite doing enough.

By "going holistic," what did your doctor mean? Exclusive elemental, or something else?

Personally I recommend adding probiotics if you have not already. VSL#3 and/or Primadophilus reuteri. Your doctor can prescribe a double-strength version of VSL#3. I use both probiotics above (VSL#3 capsules--not prescriptoin). I also use a liquid diet (Nestle Peptamen or Nutren) daily for ~500 calories and exclusively on bad days or to get into remission. I have found that my inflammation goes down when I am on the cans exclusively and my bloodwork looks great, but the ESR & CRP tend to creep back up as soon as I am getting most of my calories from "real" food.

I also drink a lot of cranberry juice. It is purely speculation...but I was already doing it to prevent UTIs, and research has shown that the nasty bacteria implicated in Crohn's ileitis are similar to the E. coli that cause UTIs.

My doctor was also not supportive of enteral nutrition (EN). I learned about from another member of the forum, Writer. If you have any specific questions she can answer them. She also wrote a book on the subject which is available to purchase. There is also a book called "The IBD Remission Diet" that is actually about elemental diet. It gives an ordered way to re-introduce food which may come in handy if you are unable to find a nutritionist to guide you through food reintroduction. My GI did give me a referral to a nutritionist upon my request, but the nutritionist had never heard of EN/elimination diet. She was able to tell me how many calories per day but that was it. Elemental/elimination diet is more common outside the US.

You should consider the liquid diet if his inflammation is in the ileum. Ileocolonic or ileitis. If he has colitis only, it is less likely to work.

My personal experience: I started exclusive EN using a polymeric diet (Nutren 1.5/2) and felt better within days (this was February of 2008). I "ate" only the diet and drank only water. After about a month I felt as normal as possible and my bloodwork after 8 weeks = no inflammation. Since then I have continued with the liquid diet and I usually have 1-2 cans a day for maintenance and probably go exclusive on the cans for 4-5 days out of the month or whenever I have a bad day. When I start to eat more real food my bloodwork is not as good but I generally feel OK.

Polymeric diets taste better--elemental tastes very unusual/bad. Elemental is also very expensive but I have been able to occasionally get good deals on Peptamen on Ebay. Elemental and polymeric generally work about the same but due to his possible allergy (eosinophilia) it may be better to use elemental. You need to chill it very cold, it may help to serve with ice and/or dilute it with water. Buy the VANILLA version, preferably the 1.5 calorie version so he does not have to drink as many. It took me days before I could drink a whole can...tastes awful. However, if it works he will feel better, and rapidly, so that provides the encouragement needed to continue with it.

You've already received some good information. Just to add, regarding enteral nutrition, it can be worth a try even for colonic disease. In a study just published in July, children with disease limited to the colon had a 79% remission rate, not significantly different from the remission rate achieved with other disease locations. So that was some good news.

you say your not near a 'ibd clinic' but if your near any major university or a state university then odds are they have a medical school and a major hospital and they would have a GI dept which I know for a fact would have GI's specializing.