2 out of 4 kids with Crohns

WOW! This is all so overwhelming.  I have a 10 year old son diagnosed with crohns in summer of 07. Had no typical symptoms (ie pain, bloody stool, diarrhea, etc). Discovered fistula. Before we were able to start treatment, he came down with a herpes virus that he couldn't fight off because of weakened immune system. Couldnt even swallow his own spit because sores went from his lips to his stomach. Spent 2 weeks in the hospital. Had to be tube fed for 8 weeks.  Used tube feedings as treatments since then. Has been on 6mp, switched to methotrexate and treated with entocort for ileum inflamation.  To date he is still not displaying any symptoms.  However, routine blood work and clinical testing (ie. MRI's, colonoscopy, barium xrays) indicate inflamation.  Doctor wanting to go with Remicade do to advanced stage and history of fistulas.  This terrifies me.  Have friends with crohns that have had horrible experiences with remicade.  One has suggested trying diet control.  He is a chiropractor and claims to have had success with it.  All reports I am hearing is that it controls syptoms for some sufferers, but as I mentioned he does not experience pain or diarrhea, etc. At his young age I am hesitant to jump to Remicade.  Any input from others that are asyptomatic regarding course of treatment experience greatly appreciated.

Information gathered helps with both of my sons. Since having youngest one diagnosed with it,  had other 2 sons tested since they seem to fit the profile more. And the oldest one has it. He is doing fine on 6mp. Daughter not tested but not showing signs or symptoms. I have hypothyroidism and had an uncle die of lupus. So there is a family tie to the auto-immune diseases. I am new to this researching on line stuff. What are some resources? Books, other types of doctors or specialists, etc.?

 

Hi,

Sorry to hear about your kids :-(. I follow a special diet, the Specific Carbohydrate Diet (SCD). Is that what your chiropractor is recommending? It healed my fistulas in 4 months, but I've seen some people say it could take as long as a year. It also reduces inflammation. It's certainly something worth considering for your kids. At first glance, it looks quite daunting, but once you get into a groove, it's easy to follow. Here are a few links, but I can give you much more if you need it:

http://www.pecanbread.com/ - focused on kids with autism, but there are several parents of kids with crohn's that frequent their yahoo group. You can go to http://health.groups.yahoo.com/group/pecanbread/ to ask questions about whether you think your kids would benefit. There's a lady named Diane whose daughter has been on the diet for 2 years, and would tell you their experience.

http://www.scribd.com/doc/11844050/Breaking-the-Vicious-Cycle-by-the-late-Elaine-Gottschall# - you can read (or download) Breaking the Vicious Cycle here. This will tell you the science behind the diet, outlines how you should follow it, and also has a ton of recipes.

http://www.breakingtheviciouscycle.info/ - the main website for BTVC and following SCD

http://health.groups.yahoo.com/group/BTVC-SCD/ - another yahoo group, this one centered around gut issues, that you can ask questions at

There are a slew of recipe sites too, which show how yummy the foods on the diet really are.

Good luck! I hope you find something to help your kids!

I'm so sorry your children are having to deal with this. I highly recommend checking out the Specific Carbohydrate Diet. Get the book, "Breaking the Vicious Cycle, Intestinal Health Through Diet" by Elaine Gottschall. It explains the diet and the science behind it.

I wouldn't be too afraid of the remicade. While there are some people who have had bad experiences there are many more who would call remicade a lifesaver. I was on remicade for 6 &1/2 years. I wish something like that had been available when I was 16 and diagnosed.

The others have posted great links (dragonpack, etc.) Those are a really great place to start. Hang in there mom. You've got a challenge in front of you, but there are a lot of great resources and this group here is a VERY supportive group.