Worried about my 6 year old daughter with uc

[joshk]

Hi everyone i am really worried about my daughter being so young and taking all the medications associated with ulcerative colitis. From what i have read on the forums so far i feel for all of you who have this disease. The amount of pain i watch my daughter go through is very hard to deal with. Im worried about side effects from her being so young. She was diagnosed with uc the beginning of 2012. She is currently taking apriso. 375 gram tablets (2 in the morning), 1 prevacid, flagyl twice a day, 4 vsl#3 probiotics a day, 20 mg of prednisone and belladonna as needed for stomach pain. Its very hard to come up with a diet plan for her as she cant really tell me what is making her flare up worse or better. I have been keeping track of what she eats and it seems like no matter what i feed her an hour later she is in the bathroom screaming in pain from her tummy and bottom. She has developed a large skin tag like mass around the outside of her anus that makes it hard for her to wipe her bottom after going to the bathroom. She has been in a flare up for about 2 months now and i just took her to the er a day ago where they gave her more steroids that dont seem to be working anymore. I am really worried of the possibility of stronger medications like remicade in a child so young. Has anyone taken these medications from a young age and is older now? Im worried about her growth being stunted and everything else. This is really hard to deal with and i pray that everyone that has this finds relief from the pain. It is nice to have this forum and i am grateful to have this forum to come to. Any advice would be greatly appreciated

 

[prplkow]

So sorry to hear about your daughter. Have you tried posting in Parents of Kids with IBD

I think you will get more support in that section. There are some wonderful parents with wonderful information that should be able to help with some suggestions.

 

[Johnnysmom]

I am so sorry to hear your sweet girl hasn't gotten relief from the prednisone. How long has she been taking it? It can take a few weeks to give relief. I would let your G.I. know if you are seeing new symptoms or if things don't seem to be getting better. The ER is usually not great at treating UC or crohn's. I would give my G.I. a call (or use on call service on the weekends) and let them know when you take her in. That way they can come evaluate her.
There are several kids on the forum who are younger than your daughter and have tried Remicade or other stronger medications. For some they have been wonderful, for others they have not seen relief. We have one little one who has had surgery to remove the colon (j pouch) and has cured her UC through surgery.

I would try a squirt bottle for her bottom. Just to rinse with some warm water.

I know for my son it took about 6 months for us to get things under control. Things like diet, meds, pain, weird reactions all happened to us quite often at first. But once you find something that works and understand a little better what you are dealing with, it gets so much easier.

I am sure some of the mommies with young ones with UC will be along shortly....

((((Hugs))))

 

[my little penguin]

:hug:

my son started remicade a few months ago
that was after a year of trying all the other meds and even going no foods for a while.
WE tried gluten free, corn free, soy free, dairy free-, fodmap etc,,, nothing help

AFTer a while you beg for a medicine to work.
for us that was remicade.


Ds has his life back:ycool:


there is a research section in the parent ibd forum here
http://www.crohnsforum.com/showthread.php?t=43002


As far as long term growth.
http://www.hindawi.com/journals/grp/2011/287574/

In addition, infliximab has been found to reverse growth failure in children with severe refractory Crohn's disease,55 reduce corticosteroid exposure,56 and delay or avoid emergency colectomy in children with ulcerative colitis.18

from


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886370/


more on remicade and increased growth rate

http://www.drbozo.com/library/1842.pdf

you really should join the parents group
lots of ibd parent not just crohn's

 

[Cross-stitch gal]

I'm sorry to hear about all your troubles and that your sweetie is going through this. I'm afraid that I wasn't originally diagnosed with UC till I was 18. But, I did have symptoms from the time that I was little. My growth was stunted from it and even now as an adult in my 30's I still don't weigh as much as I should. I too hope that things will start working out for you and her. Take care.

 

[joshk]

Thank u guys so much for the info. My daughter has started to feel better but I'm worried its just a bandaid from the steroids. She goes in for another colonoscopy on the 30th. I hope all of you and your little ones are doing good and getting relief.

 

[Cross-stitch gal]

I hope all goes well for her with her colonoscopy and that things are beginning to turn around for her. Good luck & take care. :hug:

 

[CourtneyHK95]

I hope everything goes well with your daughter, I was diagnosed with ulcerative colitis at a young age after living with it for a year with no treatment at all, its hard at first but it does get better, and something that might help if she ever has to drink contrast, mix it with capri sun and u wont taste it one bit. I hope she feels better

 

[FrancisK7]

Dear Josh,

Welcome to the forums! You've found a great community of people and I hope we will be able to help you at least a little. I'm so very sorry for what your daughter is going through. The good news is that you have a diagnosis. Now you and the doctors can concentrate on treating it.

The toxicity associated with Remicade is constant through age because the dose is calculated according to the weight of the body in kg. Provided the kidneys are otherwise healthy, a six year old has a highly functioning pair of kidneys that will have no problem taking care of the medication.

Just to be sure, I spent the last half hour researching medical databases for toxicity research on Remicade or long term effects on children and could not find any data that indicated children suffering from IBD will have stunted growth from receiving biologicals. In fact, whenever I looked for stunt growth articles related to IBD in children, the most common cause was the malnutrition that results from the disease. Remicade has a very high success rate (it's often called the Ferrari of IBD treatments) in putting the disease in remission.

I pray that your little angel feels better real soon. If you have doubts about Remicade's safety for your child please do not hesitate to ask your doctor for clarifications. But from a young adult's point of view, I feel the side effects associated with Remicade are much, much more desirable than the symptoms of the disease or the side effects of some other meds like steroids, especially for a child of that age.

As for her bum, this is probably one of the greatest source of discomfort. I highly encourage you seek a dermatologist out. They can prescribe a strong, potent and highly effective cream laced with antibiotics that are very effective at healing those kinds of rashes. My father had such a cream when he had his colorectal cancer and I used it once or twice in the past year during bad flares. They work well. For the rash to heal she'll need to apply such creams multiple times a day but it's worth it.

I wish you the best of success with your daughter's treatment.

 

[Kim007]

Hi
My daughter Lacee had the same symptoms as your daughter minus the awful stomach pain. Lacee started With the skin tags. We thought they were hemorrhoids at first. Did the colonoscopy and the endoscopy. Was told she had UC and Crohn's. 2nd doctor we went to says she's has perianal Chorns. Which is what has cause the skin tags, from what i have read about on Perianal Crohn's.. Ask your doctor about that. I am on the same boat as you, confused about the remicade. Not to concern about the growth as much as the cancer side effects. Until our next appt. with the doctor, i am going to try natural juicing to help give her the nutrients she needs to see if that helps her at all. I took Lacee off regular milk and diary products. Still waiting to go see the doctor to discuss the Remicade. I hope you find the right thing for your daughter.

Kim
Mother of Lacee

 

[modestrachel]

I was diagnosed when I was ten. I was on massive amounts of Prednisone, pretty consistently, for YEARS. I don't want to promote fear, only to stress how powerful steroids are. Over the years I had a few different reactions to the Prednisone. The main was INTENSE cravings. I would throw tantrums for McDonalds cheeseburgers and crab rangoon. It seems kinda of funny to say, but I was really emotional and physically craved the salty junk food. My poor mother. After about 4 years, 8th grade, they tried to wean me off of the Prednisone and I developed ulcerations on my lips, nose and scalp. My body was not making its own steroids and these sores were the result. I don't mean to bash the med, it was the one thing that always got my flare-ups under control, it just took a lot of it and it definitely had its long term effects. Also, a bone density scan I had at 17 showed some lower back arthritis that the docs attributed to the steroids.

6 is so young!!!! The poor baby. My first flare up landed me in the hospital for at least a month and they fed me only through an IV. I think that allowed my guts to heal.

 

[crohnsbegone]

sending hugs to your daughter..such a trooper!

 

[mama21princess]

I'm so sorry you are going through this with your daughter. She is so young! I hope the doctors can find the right things to help her.

 

[DJW]

I'm so sorry to hear your little one is going through this. Sending you and your daughter my support.