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My 13 yr old son was just diagnosed with Crohn's via Doernbecher's in Portland. He has been prescribed Imuran and Pentasa (even after his dr. knows he can't even swallow his iron pill...) 

I honestly do not even know where to begin. The side effects of the meds scare me, but I don't know of other options out there. So far he just has inflammation and some ulcers. He has not grown in over a year and is very small. I want him to grow and to be well. He had a rare form of epilepsy as a small child and meds did not help. He was healed via the ketogenic diet, so we are well used to treating with diet and natural methods, but I don't know what is best for him in getting him to grow? 

I appreciate any encouragement and direction... thank you! 
 

Stephanie

 I have 2 with this.My daughter was diag. first-3 years ago, shes now 12, she suffered since age 6. She couldnt take the iron, went w/ liquid. She wasnt eating, very under weight, in pain. We put her on pentasa immuran for 6 mo and it just wasnt effective enough. We then learned about a treatment very common in Eur and Ca called Enternal Nutrition Therapy. This is where the patient receives a liquid diet thru an NG tube inserted thru nose and a pump delivers all cal and nutrition thru the night. Look it up on utube, you can see many kids' testimonials.  I know it sounds scary, but my kids were able to insert the tube within 5 min all by themselves.It was good for them for a while and a relief to me because I didnt want them on harsh meds. After 6 months of this, my kids are getting elevated inflam. because after a time on this treatment they are allowed to eat whatever they want. they are kids so you can imagine the things they want to eat that arent healthy. I struggle between forcing them to stay on strict diet that I learned about that could prevent them form taking drugs and kind of giving in and allowing the doctor to put them on Remicade. We are at a cross roads with treatment now.  My kids are about to undergo their 2nd scopes and their new dr thinks that they need to be on Remicade to reduce inflam and get towards remiss. I dont want to keep them from gaining remiss, however, I wish that I could help them control things through their diet instead of the drugs.There is info on the web about a diet called SCD (specific carb diet)that crohns people claim has potentially cured them since they suffer no symptoms.Visit website nomorecrohns.com and search 'Stop the vicious Cycle'. If my kids were older I think they could manage the disease with food, but they just want to be kids and are not mature enough to take on that kind of responsibility and discipline now
Heather

 Reply posted for stephaniepre.

Stephanie,
  My son was dxed in the late spring.  He is on Imuran (small dose of immunosupressant) and elemental nutrition and a probiotic.  At the time of diagnosis he was moderate with a severe spot.   in about 2.5 months his blood levels are all back to normal and he has none of the symptoms of crohns right now.  
   Where to start?  Do your research!  My son cannot have steroids and biologics are not in my view right now.  He is 80-90% formula with a small meal.  I do it with him. I drink shakes and make him a few foods that are gluten free, no sugars, organic if I can.....in time we will be able to add more foods in if they dont give him symptoms.  Long term, he has a good chance of living a pretty normal life.  It has been my research and observation that some of the medicatons come with serious side effects and can just stop working.  The newest science is about how the immune system interacts with gut flora.  I can send you a ton of great info on this if you want.  I see that it worked beautifully with my son so far.  Hope this helps

 Reply posted for lizzies mom.

Thank you so much - it's been an overwhelming week, that's for sure! But I know underneath it all I feel a peace and know it's going to be okay. 
 

Steph

 Reply posted for stephaniepre.

I walked in the same shoes.  My daughter was dx @4w/cd and my world had turned upside down.  It took me a long time to comprehend it all, but I am happy to tell you it can get better.  She, like your son, was dx w/"failure to thrive".  Once the medication started to control the inflammation and we learned various dietary tips she started to grow and actually be on the charts.  I found working with a nutritionist helpful and their suggestion of journaling her daily intake.Smaller/more frequent meals w/"safe" snacks in between work best for her.

If I could make one recommendation to you is look into sending him to Camp Oasis next summer. My daughter is there as we speak.  Camp is the single best thing I've done; the children she has met over the years actually are some of her closest friends. They are relatable and prior to going my daughter felt so alone and different - not knowing anyone with similarity.

Good luck in your journey and know there are a lot of people here that are willing to share their experiences and lend an ear when needed.