My son was diagnosed with UC and is now on Pantasa last month.  He's only 1 year old.  He had bloody diarrhea and high fever for two weeks before we finally found out what it was.  I can't find any info. for a child this age with UC.  What should we expect for his future?  What diet is best (it's all so conflicting)?  I've got tons of books but they all contradict each other it seems!  Anyone else have one diagnosed at this age?

 Reply posted for ProudMom.

I've been there. My son was diagnosed right around 2 years old, he's 10 now. The worst part about them being so young is the communication. Matt's baseline has always been discomfort. He doesn't know what normal feels like. You will have to check stools for many, many years to come.

I look for a few things to tip me off to a flare up. 1) His eyes become very dark. The Dr told me it's a side effect of the loss of blood. 2) He tends to have pee accidents right before a flare up. Don't ask me why...it just works that way. 3) He becomes very unfocused. 4) His lips become pale. If I see any of these I start checking the toilet bowl for blood/mucous.

He has very specific food allergies which can lead to a flare up. If you haven't already, you might want to have your son tested. We have leaned away from juices and kool-aid and more toward home brewed decaf iced tea. I sweeten it very lightly and add fresh ginger. This one took a while to get used to. But I think it's been worthwhile. And the ginger is supposed to have anti-inflammatory benefits.

Hope I've been helpful. And take care of yourself too.

Nancie

 Reply posted for ProudMom.

First let me say I'm SO glad you got some good news!     And I think the second opinion sounds good too.  It never hurts to have a collection of doctors considering the case. 

You know - we are struggling.  Our first attempt to start weaning the steroids resulted in some flaring symptoms.  We are going to try again in a couple of weeks.  Due to another really unusual problem, she's not a candidate for some of the other drugs that would likely be helpful.  It is not the end of the world but I am a little frustrated.  Like every other Mom on here, I just would give anything for it to be me and not her!

Take care.....

 Reply posted for AZMOM.

We're now doing great.  He's gained his weight back plus an additional two pounds (making him 24 lbs)!!  We're looking forward to celebrating his 2nd birthday soon!  We recently had a followup at his GI.  It has left me hopeful, yet confused.  Biopsy shows he has UC, however, a blood test showed it was more consistant with solitary rectal ulcer.  Dr. also said he wasn't 100% sure he had UC at this point because nothing is adding up.  He said if it is UC, there's a 1/3 chance of it remaining the same (proctitis), 1/3 chance it worsening and 1/3 chance it dissapearing.  He kept him on his meds (Pantasa) and will have another colonoscopy in January.  He was impressed with his growth, weight gain and all the noise he heard from the hallway of him being a typical, healthy, wild little boy.  We are seeking a 2nd opinion due to the fact of it being a lifelong illness and his young age.  How is your little one doing?

 Reply posted for ProudMom.

Sorry so late in my reply.  We were out of state visiting family.

Yes, mouth sores.  She had them extensively in the hospital.  But had a few just a couple of weeks ago.  Her Crohn's still isn't completely under control yet.  I just made a note of them on the calendar I keep to tell the doctor when she had them, etc.  Of course, if they hurt enough not to eat or drink, I would make the phone call earlier.  How are things going for you now?

 Reply posted for ProudMom.

My son is 8 and has Crohns.  He was diagnosed last October when he was 7.  I am so sorry to hear your son has UC.  My son's doctor has over 300 pediatric patients with Crohns and UC.  He has patients as young as 1 years old.  It must be so frustrating for you.  It's frustrating for me and my son is old enough to tell me he has nausea, pain, ect.  You sound like a great support system for your son.  I will keep you and your son in my prayers.  Take care. 

 Reply posted for AZMOM.

I'm so sorry to hear about your little one.  Your right, it is difficult!  I've done all you've done it seems...countless hours on the internet, I have about 10 UC/Crohn's books, etc.  I'm having a hard time because he can't tell me if he's hurt (not specifically), or if something is bothering him, etc.  Fortunately, I don't work so I'm with him 24/7 so I can control most everything.  I have millions of questions.  His pediatrician has never heard of a child this age with UC but his GI is a couple hours away at a children's hospital so I think we're in good hands.  We've got a couple appts. this week and planned on asking to talk with a nutrionist.  I've found so much info. is contradicting.  One thing I've noticed is ulcers in his mouth (which were really, really, really bad when he was sick and just diagnosed-couldn't eve see some of his teeth).  Now, when he gets real cranky, fussy-I've noticed ulcers on his tongue.  Does your little one get this?  I've read they are common with UC but does it mean a flare up, just something they get?  So many question!!!!!!!!!!!

 Reply posted for ProudMom.

My daughter was diagnosed at 6 (also in June of this year).  It is a lot older than your son, I know.  It is hard to find information on young children specifically and sometimes all the disease information and advice on the internet is overwhelming.   One of the books I read about eating while she was inpatient was especially helpful.  It was: 

What to Eat with IBD: A Comprehensive Nutrition and Recipe Guide for Crohn's Disease and Ulcerative Colitis by Tracie Dalessandro

Sorry about the font change...that's what happens when you cut/paste from Amazon.  Anyway, the book had a lot of common sense advice and the author is a dietician.  The main thing I learned is that it is a lot of trial and error and there is not a one size fits all diet.  The physician we go to has an IBD Clinic where you have the opportunity to talk with a nutritionist.  Does your doctor have something like that?  Perhaps that would give you some peace of mind.  

Hang in there.  I promise I can relate to being scared to death and spending lots of nights reading on the computer.  :-)  I hope he does well quickly.  You'll feel better and more in control when he does.