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my 8 y/o daughter was just diagnosed on Friday.  I'm an LPN and feel like i dont even understand all of this.  She has only had symptoms for 5 weeks. complained of a stomache off and on but it didnt seem to be that severe she would continue to play as usual and is into all kinds of extra curricular activities like dance and twirl. Then she told me she had blood in her stool. i figured she was just constipated so didnt pay much attention then a week later she said it was still there, so i told her to let me see. I couldnt believe what i saw i knew it was more that just a small tear. Her pediatrician did an exam and said it was a tear and should get better in about a week. when it didnt he refered me to a GI and he thought it was a tear and put her on flagyl. after another week with no relief of symptoms i called the GI back. By this time she was in the bathroom more than she was out. 3-4 times a night having accidents, and i couldnt tell how many times during the day. so we had a colonoscopy on Friday and confirmed Ulcerative Colitis.  All this just came on 5 weeks ago all of a sudden. I have been on this web site all weekend. Im scared to death now.  The condition has been inconvienient so far but the things ive been reading seem like its terrible. I dont know if its just because she hasnt had it very long yet, or she's so young, will it get worse than this? will she really need to have a psychologist? I have so many questions i cant even think of them all. any help or advise will be greatly appriciated.

 Reply posted for victorsmom.

Great reply Victor's Mom...I agree with everything you said.

You have to be grateful for every little thing...I want to play the poor me, my poor daughter but I always jump right into it could be worse.

Yes, I do baby her a bit more and I do feel bad about her/our situation and I have no idea what the future holds but I have to take it 1 day at a time or I would go crazy.

My daughter is also under good control on 6-MP and when I need to I also use cortenemas, she is also on VSL- I live in gratitude every time she has a good poop...

 Reply posted for blynnmck.

The beginning is always the worst...we had our nightly cries to sleep...it is sooo scary especially when you don't understand the disease. My son was also 8 when diagnosed and it was QUICK...now that I look back at the "first time" all the signs were there...the foul smelling gas...the achy joints and of course the cramps. When I saw the toilet full of blood my stomach turned in FEAR!!! All the testing...the WAITING...then the confirmation of UC...dear I know...it's sooo hard.

But here's the good news...yes if any! It does get better. He is now on 6MP and has flared 6 times after that...we control the flares w/Hydrocortisone enemas and see him getting better after a week or so and completely in remission by a few weeks. Long gone are the days of flares w/10-12 times a day...and now as it is controlled by the meds (50mg daily of 6mp) the flares produce @1-2 on a good day and up to only 3-4 on a bad day. Enemas are more brutal on us parents because it breaks our heart...I cry afterward and say...WHY DOES MY CHILD have to endure this...but then I pray and I play the "it could be worse" game in which we play w/Victor when we get down ...we say...name 3 things that could be worse...it puts things right back in perspective quick!

Please let me know if you have any questions...or if you daughter wants to email my son so she doesn't feel alone. Hugs to you and all us parents dealing w/this disease and God willing our kids are young enough where they may see a cure in their future.

 Reply posted for blynnmck.

My daughter was 4 when she was diagnosed, I know how horrifying it is in the beginning.   It is difficult, after all, WE are the parents and should be able to fix everything.   I found it helpful to start a food diary.  It would make it easier to pinpoint the foods that were having a negative effect on her system.  Our gi had us meet numerous times with her nutritionist to "retrain" me as to diet/nutrition.   It turned out she was consuming entirely too much fiber for her "special belly".  (Who knew, I thought our family was living an organic/healthy lifestyle)!

Beware of reading too much info on-line.   Often times they are the wose-case scenarios and can make your headspin.  Everybody is different and you only need to worry about your daughter's current issues on hand (today, not future).  Dealing one-day / one- meal even at a time is enough.  Have you read Breaking the Vicious Cycle yet?   It is a  good read in showing the importance of understanding the effect of food on the body.

As for your daughter's school, you need to be her advocate.  Sending in a brochure was nice, but I suggest a face-to-face w/principal, nurse, and her primary teacher.   There is a 504 plan (a template is available under the kids/teens tab) that you can familiarize yourself with.  This will allow you to make necessary arrangements for her should the need arise.  It could be as simple as a "free pass" to the bathroom, water bottle @ desk, snack during the day, etc.  The school has no choice, your daughter has rights under the ADA. 

I know it doesn't seem like it now, but it will get easier.  It is a matter of finding the right diet, nutrients, supplements, sometimes meds that work best.   We have had our share of ups and downs, but the good outweigh the bad 10 fold.  It is now 7 years later........my daughter is 11 and she is doing very, very well.

Know we are all here to help.

Lizzies Mom

 Reply posted for mygirlrj.

 Reply posted for alanschachter.

we live in the southern most tip of ohio. she is taking asacol, hydrocortisone enema, prednisone, folic acid, and immodium.  it's horrible she begs me not to give her the enemas. i end up crying everytime after we are done.  we dont go back to the gi till may 18th. i can't tell if its getting better or not. she wont let me check her bowel movements hardly now cause shes afraid ill make her do another enema.  it's only been a week and it feels like a month. she says shes never gonna be normal again. and why did she have to get this. its like she has cancer or something, only people understand cancer. they feel bad for her but they dont know what its like every night at bedtime. im afraid he'll want to put her on some of the cancer meds but i don't know anything about them. will she lose her hair, will she get sick really easy? everytime i call them for advise he gives her another pill. she already is taking 4 pills twice a day. what happened to my perfectly healthy girl? i also have a 15 month old now im scared to death she's gonna end up with it too.

 Reply posted for blynnmck.

Hi

My daughter was also diagnosed at age 10...it started the same way as yours did with stomach aches....and then the bleeding...she got very sick very fast. She did end up going to a psychologist, mostly to deal with the mood swings from Prednisone.  She is a very angry child and I can't say I blame her.  I hope you find the right medication/diet/etc....what ever works for you.  Become informed but try not to be consumed with "worst case scenarios".  It is a very unpredictable disease - there is no way to know if she is going to get worse..I think that is one of the hardest parts to deal with.  Hang in there & be sure to take care of yourself too

 Reply posted for blynnmck.

Dear Mom-

I can so realte to what you are going through. My daughter was diagnosed with UC at age 10 and it is so difficult- especially in the beginning. Read, read, read. You have to educate yourself and i hope you like and trust your Pedi GI.

What meds is your daughter on now?

We are finally on the right medicine for now and my daughter is back to normal, one poop a day, formed, no tummy problems etc.

It took a long time to figure out the right meds- she was on Prednisone for way too long and is now on 6-MP.

VSL#3 is a very good probiotic- proven to help with Ulcerative Colitis.

I give it to her every am.

Where do you live? I am sure you have a ton of questions and I know in the beginning I reached out and called strangers trying to grapple with this situation.

Some good forums exist on the net that you can read and ask questions as well.

http://www.dragonpack.com/ibdsupport/parents/

http://www.healingwell.com/community/default.aspx?f=38

I look forward to hearing how you are doing and am glad to help any way I can.

(((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))