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My son is now 4 & was diagnosed with UC when he was 3. It's been a year now on Purinethenol (mercaptopurine), Pentasa, and for flare ups Prednisone & Endocort.  He has had 2 flare ups in a year, but this past one can't seem to get under control. His labs came back for 2 months now with high fecal calprotectant (sp?) count of over 1000 when normal is 50.  The DR thinks his colon in inflamed again even though his stools are solid once a day & no blood. He doesn't complain of pain, yet he is a tough kid and never has complained even when he had bloody diarreah all day.  Think he is just used to the discomfort by now.  Anyone get labs for this done?  Dr wants to do another colonoscopy to confirm inflamation.  My son was off Pentasa & now back on it (we were weaning to see if the Purinethol would be suffice).  Anyone know how long the Pentasa takes to work?  Any input would be great or other parents of kids in this situation. It times like this when you just need to talk to someone who understands. Thanks.

 Reply posted for mylittleguy.

My son was on pentasa for over 2 years and it never worked for him without the steroids, so I guess you could say it never did work. his crohn's is in his colon only and he has had the diharea issues for 3 years now. he to doesn't complain much either, but he is strong and isn't a complainer, I know it bothers him more then he will let on. we have tryed remacade, humira, then remacade again and now he has been on methotrexate for 2 months, still no relief. the doctor wants to remove his colon and insert a colostomy bag. Is there anything anyone else has tryed? A differant combo of meds maybe? I don't know what we should do, is this surgery the only option? If anyone has been in this situation and has any advice or reasurances for me, please respond A.S.A.P. my son will be 14 this summer, is this a big risk or will it be a blessing in disquise? Any advice or support would be greatly appriciated, Thank you.

                                                                           Tys Mom

 Reply posted for JAMom.

JA MOM,

So your daughter is 5 and she gets Humira?  I'll have to ask if it has been approved for UC yet for kids because I rather try that than the Remicade.

My son has many allergies to foods, yet the Dr said it was so low it wasn't the cause of his inflamation. But maybe if the labs show high numbers it could be. Our dr says UC can not controlled with diet; however, i read that some people find some foods are worse than others and that Crohns can be helped with eliminating certain foods. I'm willing to try anything, but just getting my son to eat something at times is hard enough, let alone eliminating foods.

I would say these diseases are definetely inherited, yet drs wants to say that can't confirm that. My husband's side of the family have crhons and all sorts fo IBD symptoms.  It's so frustrating!  Thanks for your reply!

 Reply posted for mylittleguy.

My 5 year old daughter just had the fecal calprotectin test.  Her level was 600.  The gastroenterologist said anything up to 500 is considered "normal" and over signals possible intestinal inflammation.

I am very new to this so I don't know anything more, but wanted to share our experience.  My daughter was diagnosed with juvenile arthritis before her 2nd birthday but has had abnormal bowel issues for as long as I can remember.  She was diagnosed with uveitis about 18 months ago and at her last JA appointment, the new rheumatologist we saw said her form of uveitis was unusual for her form of juvenile arthritis.  I had heard there was some connection between GI issues and certain forms of uveitis, so I brought it up and he referred us to the gastroenterologist who is now looking at a variety of possibilities. 

Because of the 600 number with the fecal calprotectin test, the doctor suggests an endoscopy/colonoscopy.  Because my daughter is on medications for the arthritis that the gastroenterologist said she'd prescribe for an IBD, she is surprised my daughter would have an IBD.  But the Humira isn't keeping the uveitis under control, so I suppose it could also not be keeping the IBD under control.

Several people have told me she should come off various foods to see if her body is reacting negatively to them before we do the colonoscopy/endoscopy.  My daughter is anaphylactic to peanuts and tree nuts, but has never had an anaphylactic (stop breathing, hives, etc...) reaction to other foods.   I've read a bit that there is no conclusive study that links food intolerances to inflammation in the gut.  Is this everyone's understanding?

My daughter is having a lactose intolerance test in two weeks, but the gastroenterologist said that if it comes back positive, it is unrelated to the inflammation.

 Reply posted for Ds mom.

Thank you all for responding.  I'm so glad there is this site and to be able to connect with others in this situation. I just hate that any kid has to go thru this!  I'm giving my son fish oil and probiotics, along with his meds, and hoping the next blood test/stool test show that his levels are better. If not, we'll have to do another colonoscopy (it showed his entire colon was inflamed a year ago and then we got it under control and in remission.)  I just don't want to try remicade on such a young kid when all the potential risks. It really scares me!

 Reply posted for mylittleguy.

I have UC and my daughter was diagnosed with Crohns at age 3. (She was 2 when the symptoms began and is 5 now.)  With the type of Crohns my daughter has, its always hard to be sure if her disease is really in remission, so I totally understand the position you're in.

 Reply posted for Lizzies Mom.

Hi

I have never heard of that 'count' either that you are talking about. I just wanted to offer support -- my daughter was diagnosed at age 10 (a year ago) and I know how hard it can be on a parent. I hope you find your answers...hang in there

 Reply posted for mylittleguy.

My daughter was 4 when finally diagnosed with CD that was 6 years ago and I can tell you it get easier once their little bodies respond to meds/diet/treatment and get into remission.   It is so hard to differentiate if they are in pain or not because I do think their tolerence for pain is at a higher than norm level.  (especially being so young, my daughter probably didn't know what pain-free felt like)....breaks my heart.

I'm not familiar with the count you speak of, but am wondering if the docs did an upper scope the last time he had a colonoscopy?   Could he have CD instead? See, CD can affect anywhere from the mouth to the anus and everyplace inbetween.  Maybe he has inflammation elsewhere that the current meds aren't targeting?   Just a thought.

I hope you find the missing piece to the puzzle and get him on the road to recovery.

Lizzies Mom