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Just wondering if there is anyone else out there who has dealt with a toddler being diagnosed with UC and what your treatment plan is.  Our son (just turned 2 in June) was diagnosed after a colonscopy/endoscopy yesterday.  We have a follow-up with Ped. GI next week but would love to hear some thoughts from others in our situation beforehand.  We hope to follow the most natural approach (diet modifications/natural supplements) in helping him with the least medication as possible but don't even know our options yet!   Thanks!

 Reply posted for UC4LittleLeo.

Your story sounds a lot like our son.  He was diagnosed a little before he was 3.  That was about 9 months ago.  It seems like we have not gotten very far.  He is currently on Pentasa and Flagy.  The Doc wants to try 6mp but  I'm not sure about that.  Have you had any help with natural or diet?

 Reply posted for UC4LittleLeo.

Continuing because of the character limit...

Alternative treatment options are sometimes frowned upon on this board, but there's a Facebook group that discusses alternative options.  If you are on Facebook, search for it if you are hoping to learn more about going that route.  I don't think I can post the link here.

Hoping your son gets excellent treatment in the days, months, years to come...

 Reply posted for UC4LittleLeo.

Sorry to hear about your son's diagnosis.  My daughter was diagnosed with juvenile arthritis just before her 2nd birthday (she just turned 8 last month).  She had GI issues for as long as I can remember (before the JA diagnosis) but doctors dismissed our concerns.  She was five when the bleeding started and we got the ulcerative colitis diagnosis.  She was taking Methotrexate and Humira at the time, so clearly they were not keeping the UC quiet!  As soon as she got the UC diagnosis, I did research and learned about the Specific Carbohydrate Diet.  She has been on that for more than two years and doing fairly well considering she is no longer taking methotrexate or Humira.  She has also been on Low Dose Naltrexone (LDN) for more than a year.  I do not know if it's the diet or the LDN or a combo that are helping her.  We've also been trying to keep her Vitamin D levels up and using probiotics and fish oil.

What I've learned over the last six years is to go with your gut (no pun intended).  If something doesn't seem/feel right, switch gears.  I wish I had pushed for answers with my daughter's GI issues instead of letting doctors dismiss them while continuing to give her NSAIDs for joint pain (even though the doctors insisted the joints were quiet and couldn't explain the pain complaints).  She also has uveitis in one eye, so we go to several doctors each month.  It can get overwhelming so be sure to keep a journal and a medical binder with copies of all your son's lab work, test results, etc.  I refer back to my notes all the time.  Our pediatrician recently passed away (in his 80's - was my doctor as a kid) and we got my daughter's records, which included letters from each of the specialists she sees.  I can't believe how many errors there are (or key bits of information are missing) in these letters to the pediatrician!!  

 Reply posted for Arica.

Thanks Arica - appreciate your response.  Please read my prior post for updates.  Good luck with Ingrid's IBD - stay strong - It is nice to know we r not alone in this!   - Maria 

 Reply posted for mylittleguyuc.

Thanks  for your response Wendy - I really appreciate your kind and positive words.  After biopsy results came back, Leo's diagnosis changed to crohns disease.  We met with multiple docs and have decided to go with an MD who was a pediatric GI for 20 yrs and now practices integrative medicine.  We are starting with major diet  changes and natural supplements as well as some homeopathic remedies.  We will check his inflammation levels in about a month or two to see if it is decreasing and will make a decision regarding medicine from there.  Wish u and your family the best!  It is nice to know we are not alone! Thank you!

My daughters Dr. has her on an elemental diet, mesalamine (pentasa and canasa), and Flagyl (low dose antibiotic).  She has been diagnosed with IBD but she is too young to differentiate between Crohns or UC.  The elemental diet consists of Elecare (hypoallergenic formula) and Neocate Nutra (hypoallergenic "solid food").  After months of being on this regimen we are able to reintrouduce single foods: sweet potato, squash etc.  The elemental diet is sooooo boring but it has given her gut a chance to rest and recoup. Pentasa and Flagyl will be maintenance drugs. Looking forward to stopping the canasa.   As far as I can gather there are not a whole lot of toddlers or babies with IBD so seems like some of the treatment plan is, I hate to say it, guess work.  Good luck!
-Arica (Ingrids mom)

 Reply posted for UC4LittleLeo.

I know you must be in incredible shock and disbelief with these news. I was there 3 1/2 years ago when my son was diagnosed with UC at age 3. It will be okay! I know it's so hard to have your son go through this and watch him helplessly, but you will find what works for him and he will be a normal boy. My son has had up and downs and tried many drugs and he seems no different than another other boy today. We started with steriods to heal his ulcerated colon and then introduced 6mp (purintehol) and he did well on that for a year or so. We then had flare-ups and had to add steriods again and wean off andtry Pentasa. One year ago we moved onto Remicade and he has responded well, gained weight, etc. You will findwhat works. I understand worrying about these powerful drugs; however, his Dr and i just wanted him to heal quickly, grows, etc adn I wasn't willing to go the 'natural' way. Any MD Dr will not suggest going natural.  UC is not "just IBD". You need meds to control it. I add lots of vitamins- fish oil, probiotic, multi, & calcium, but that isn't enough to keep my son in remission. My thoughts are with you and wish your son the best!  -Wendy