My 3 year old dd has been diagnosed with UC - still in a flare - ugh!

My 3 year old daughter was recently diagnosed with UC after much testing and a colonoscopy and small bowel follow through to rule out Chron's.  She's had blood and stool testing galore as well, for everything from bacterial to Celiac. 

She's currently in a pretty bad flare.  As a matter of fact, I'd say since the colonoscopy and starting Azulfidine several months ago, it's getting worse instead of better.  She has several very loose bm's a day with a significant (to me) amount of blood and mucous.  All of this is after she was diagnosed at age 18 months with juvenile rheumatoid arthritis (poly type).  Her arthritis was brought under control (remission?) with methotrexate weekly injections, which came after we tried naprosyn and prednisone without any long term success.  Now she's off all of the arthritis drugs and has been for almost a year, but she's on prednisone and the azulfidine, along with prilosec and iron supplement. 

I've been finding very little information out there regarding UC and children this young.  For this reason alone, I'm wondering if her diagnosis is correct.  That and she's been on the pred almost 3 weeks and the azulfidine several months with no apparent improvement in her symptoms.  I am just so fearful that perhaps something was missed.  She has a lot of stomach pain now, much more than before the drugs....this is so frustrating.  I don't even really know what I should ask, but I guess I'm just looking for somewhere to go to get info about this disease as it relates to very young children.  Anywhere you can point me to get info and to maybe discuss with other parents?  I don't even know enough to tell whether her doc is a good one or not.  Thanks in advance!

 

Check out this forum specifically for parents of IBDers:

http://ibdsupport.dragonpack.com/

I had to look it up... I remembered it had something about "dragon" in the name.

To the OP, being diagnosed with IBD at such a young age is somewhat unusual, but it does happen. From what I've read, the majority are diagnosed in their 20s and 30s, but it's not uncommon for people to be diagnosed younger or older than that.

For all the poor babies out there suffering with this horrible disease, and the parents. I don't offer any kind of help in the way of info, but I will offer my sympathy & prayers, I hope nobody minds...

Hi, i'm so sorry to hear that your daughter is suffering. Really it bought a tear to my eye.I really hope and pray she gets well, but don't lose hope, there is alot of help out there. just keep looking.
I found this site days ago and find it good talking to poeple who know what it's like.
there is another group i've joined recently which might be of help' they can advice you on anything and are supportive.
It's a national association for colitis and crohns disease,their web site is www.nacc.org.uk.
i really hope they are some help.
Also i'm so glad that Haileys letter sent you that mail, cos the best thing is speaking to someone who's been thru it.
All the best, sorry couldn't be much help, but i pray god makes her better.

samie xxxx

hi, keylime, again so sorry to hear that your children have UC. to think that they go thru what i do is terrible.
I'll pray they get better.

samie xxxx

Hi and welcome, I am so very sorry your 3 year old is going through this. My son, now 9, was 4 when diagnosed. It's heartbreaking, but there is lots of hope for relief. It's real important to find a good pediatric GI and a good primary pediatrician as well, make sure they listen to and respect your concerns and answer questions to your satisfaction and are accessible (can you call or email them any time and get responses within reasonable time). If they don't measure up, swtich.

It's also very helpful to have this forum as you gain the benefit of other's experiences.

Stay optimistic. Although you're scared, maintain an upbeat attitude with your child (they need to see light and sparkle in your eyes, especially now).

Make sure also to research suggested medications before you agree to them because many carry substantial risks and side effects that can appear later, so you'll want to weigh these against the potential benefits and the duration of such benefits.

As for a misdiagnosis, I suppose it can be possible, but given all the tests she's gone through, it sounds a little unlikely.

I'm thinking about your little one and praying for her. Also, visit www.ccfa.org if you haven't already.

JsMom
Son UC diagnosed at 4yrs. Now 9years. Refractory to all meds, incl steroids. Refused remicade. Colon and rectum removed 2007. Opted against J-pouch. Permanent ileostomy. No meds. Doing great.