So Young for Crohn's

My son Jack was just recently diagnosed with Crohn's a few months ago. He was 7 years old when diagnosed and just turned 8 years of age in March. It started before the holidays where he was bleeding and there was muchus. We has NO idea what was going on and sought help through his primary doctor. They kept telling us it was a fisher and to keep giving him stool softner without even seeing him. Finally, after months of still bleeding, they saw him and ordered test. When everything came back negative, we sought help at Childrens Hospital of Philadelphia. They scheduled a colonoscopy and was found that he has Crohn's Disease. DEVESTATING to us and finally knowing the road ahead of him is going to be tough.

He is a horrible eater, he primarily Craves carbs and I don't know why. He would eat chinese white rice and pizza with no cheese Everyday!! Just weird combinations. Anyone experience that?? Also, he never complains that he is in pain or hurts at all. He is in another flare up right now. The prednisone cleared it up orginally. He is on 2,500 mg of Pentasa - and was wondering if anyone can give me suggestions on how to get that down his throat. I have been opening the capsules and putting it in orange juice to drink - it's just not working. Any suggestions?? Tried yogurt too!! Any suggestions is greatly appreciated!!

Sorry to hear about your son

My son is older so I have no advice on how to get a younger child to take pills! Hopefully, someone will have some suggestions for you. However, I do believe there are certain meds that need to be taken 'whole', please ask your GI or pharmacist if it's okay to be breaking up the capsules.

Please do have a look through the Parent's forum... lots of wonderful parents there and they'll have tons of advice for you!

From my understanding, Pentasa is a very mild drug and it may not be enough to keep him in remission. As you say he is having another flare, it seems the pred may have reduced the inflammation initially but the pentasa was not enough to keep him in remission. Has his GI suggested another treatment?

Even years before symptoms or diagnosis, my son always preferred carbs (ie 'white' food - breads, rice, pasta, pizza, etc.) as well... these are often low residue/low fibre foods... I've often wondered if that was an instinctive response causing him to prefer eating foods that didn't aggravate his GI system???

I hope you are able to quickly get your little boy into remission!!

:ghug:

Sorry to hear you and your son are going through all this. I'm a Jack's mom too. My son Jack was dx'd at 10 he is 13 now.

It was hard enough to get my 13 year old to swallow the Pentasa, can't imagine 8.
I have a carb eater too, not sugar or sweets, Loves carbs. How is his growth/height?

Prednisone can quickly clear up a flare but most feel it is not a long lasting solution as once you are weened off symptoms come back.

Please check out the Parents of IBD section when you get a chance lots of useful information on there.

Pentasa may not be enough to keep things under control but is generally thought to be a step up approach. Start with the mildest and work your way up until you find the one that works. Have they talked about any other medications? Does he get regular blood work done? SED rate/CRP? A quick easy test for inflammation is the fecal calprotectin. There are lots of different treatments to look at and it is a steep learning curve at first and as you will find there is no one size fits all with this disease.

I suggest keeping a symptom diary as well as a food diary to try and pinpoint triggers. Welcome to the forum, I'm sorry you had to find us but it is a terrific group of people with tons of knowledge and experience and an awful lot of support

I don't have any suggestions for you, I just wanted to give my support. I'm 62 with crohns and my heart goes out to all the young kids with it.

I pray your boy gets well soon. And if there is anything I can do to support you please let me know. I live in No. California.

Jim
(Pops)

Hi and welcome from a mom to another young one.
My Grace is 4.
You've been given some great advice.
Please feel free to stop by the Parents Forum. It's a great place for support.

HUGS

Well, I never had much problem swallowing my pills but a few tips can helps. I find that jelly, jello, pudding, stuff like that are helping like taking a spoon and just putting the pill on top and swallow. Carbonated drinks also helps, I don't know it kinda cover the pill and helps a bit. Gummy bear and marshmallow would do the trick with kids sometimes. I know the pentasa is big enough but maybe it can still be done with a big enough gummy and some liquid.

I also want to suggest not to break the capsule even if it may helps it's actually compromising the effectiveness of the treatment. They are meant to be specifically released once they passed the stomach. Removing the coating is pretty much killing the effect.

Hi Jacks mum, sorry to hear about your son. It is hard with them being so young. My son was 8 when he was diagnosed, he is now 12. It is so hard to take when you have recently had a diagnoses, but it will get easier when you can understand more.

We started on 2500mg pentasa too [ now 3000mg ], he was also on prednisiolone. When Josh was diagnosed he couldn't swallow tablets at all, so a really major problem. We don't have capusles of pentasa, ours are large tablets. What I ended up doing was crushing them to a powder [ I know you aren't meant to do this, but needs must ], and adding them to yogurts or juice.
Josh still hated the taste, but at least took them. Gradually I cut the tablets into tiny pieces and he managed to swallow these, then started making them bigger. He can now swallow 2 tablets together with no problem! It does take time though.

Josh's eating was very plain, and still is. Dry pasta and rice [ no sauces of any sort ], he will rarely eat meat, apart from chicken. He doesn't have gravy with anything, everything is dry. He doesn't drink any sort of carbonated drinks, just water or sometimes fresh apple juice.

I do wonder sometimes if it is their bodies way of knowing what they can handle so they don't eat things they know will cause pain.

Hello. I am so sorry you have to go thru this. My daughter and son put the pill in a piece of bread and swallow the whole thing. It what works for them.

I am not a mother, but I myself was diagnosed with Crohns at the age of 7, I am now 25.

I know my mum had a hard time getting me to eat anything at all. You are doing the right thing by being on here. Keep yourself as informed as possible. I have spent most of my life completely in the dark about my illness, finding out about the complications the hard way. Looking back, I would have taken a lot better care of myself had I known everything that Crohn's might throw at me, and I might have been more equipped to talk to consultants about more appropriate treatments.

Most of all what I would say to any parent of a child with Crohns is no matter how protective you feel try not to set limitations for your child. My mum means well but her mantra for life has become 'Stephanie has Crohns' there were a lot of things she felt I would never be capable of of because of this and it tended to make me a little rebellious. Let your child guide you, only he will know what he is capable of.

Best Wishes xx