Community Forum

My son was diagnosed with Crohn's approximately a year ago.  He is very small for his age in both  height and weight he also has severe food allergies to milk and nuts.  I am trying to get him to gain weight but he has hardly any appetite.  He currently is taking Asacol HD, a full adult dose.  The doctor has mentioned putting him on remicade or 6mp.  The side effect of these drugs scare me being that he is so young. But I don't know that I am doing him any good not putting him on one of these. He will go about three weeks and will feel well then he will go about a week where he will have a lot of pain with vomiting and diarrhea.  Last month during the bad spell he lost 4 pound in 4 days and in the last 3 weeks has only gained 1 pound back.  Is anyone in the same situation, is this the nature of this beast we call Crohn's? I was diagnosed with UC 3 years ago but it didn't seem to take this long to get into remission.  It's a hard time for kids at this age in a normal situation,let alone to have this disease.  Any advise you could give me I would appreciate it.

 Reply posted for ktmarcyyahoocom.

Camp Oasis is the single best thing I've done for my daughter, she actually leaves tomorrow for her 5 day get-a-way.  She and a handful of her friends keep in touch throughout the year. They didn't know each other before, they don't live in the same town, but all have one thing in common.  They have become to rely on each other for support.  Take a look on You Tube, I know there is actual footage of the kids having the time of their lives.   She's taken part in activities that she never would have tried if it weren't for Camp O.   Zip Lines, Aqua (tube attached to a wave runner and being raced through the lake), tie dyed shirts, archery, etc.   The kids she has met through Camp understand her, they all have different stories yet so much in common.   If it weren't for Camp, she would continue to feel alone in the battle.   Good luck in convincing your children.  In my opinion, it is much more healing than years of therapy!   

 Reply posted for crohnsmom27.

I also have a teenage son with Crohns.  He was diagnosed in the 6th grade and is now going to be a sophomore.  We did begin 6MP as soon as we were able to stabilize him.  He has been on it now for 3 years.  He is also small and light weight.  He was somewhat healthy for a few years.  We also changed his diet pretty dramatically.  He went gluten free and tried to stay off high fructose corn syrup and sugar as much as possible.  He loves to play sports and has had a lot of success with sports in the past.   In the past year and a half he has had a bad flare every six months and each time loses around 10 pounds.  The doctors always recommend boost and drinks like that but I think the high sugar makes him feel worse.  He really does not like that.  Smaller meals and constant snacks are a great idea.  We also do milkshakes and smoothies with fruit and ice and sometimes egg protein powder.  Our son believes the gluten free makes a big difference in how he feels.  He has been gluten free for three years.  Unfortunately nothing seems to keep him from eventually having flares.  I read a few of these posts and was surprised by the amount of teens not on medication.  I am wondering if it is worth having him on 6MP.  since he is flaring anyways.  I am also looking for a local support group where our son could actually meet other teens with Crohns in our city.  I have mentioned Camp Oasis but our son has also pulled away from friends and is not that excited about going to Camp Oasis.  I would love any ideas out there.    

 Reply posted for lizzies mom.

Thank you so much for your reply.  I will research the breeze juice drinks to see if he is able to have them.  I have also contemplated sending him to Camp Oasis.  He has always kind of kept to himself and this condition has made him pull back from his friends a bit, so I am not sure that he would go.  He doesn't say much when i bring it up to him.  I think the camp would be great  because it will show him that he is not alone and it seems to be a lot of fun.  He can talk to me but I think it would help him if he had someone of his own age group that knows what he is going through to discuss this with.  I will discuss camp again with him.  Again, thanks for the tips.

 Reply posted for crohnsmom27.

I had gone through the whole "failure to thrive"  w my daughter.  I found meeting with a dietician to be very helpful.   One particular thing that helped Liz was more frequent smaller meals w/"safe" snacks inbetween.  We also added calories into her w/supplementals ie boost, which she disliked, Breeze is by the makers of Boost and is like a high calorie juice box. Add calories into his every day meals...syrup on pancakes/waffles, gravy on meats and potatoes. Immune suppression meds frighten me as well. It may be something you have to consider down the road, but for the time being perhaps making some other dietary/lifestyle changes could help make an improvement.  I'm not sure of your son's age, just that he's a teen, does he go to camp oasis?    If not, I strongly recommend it.   Camp is the best choice I made for my daughter.   Good luck in your journey.  I do hope he feels better soon.