Mother of an 11 yr old with crohns now 13

[bostitch7]

Hello My daughter is currently 13 yrs old. She was diagnosed with Crohns at 11 years old. Once they figured it out she did the steroids and she takes 2000 mg of pentasa a day. Flagsyl was prescribed but was way too strong for her. That was her first encounter in school with no control.
She has been doing ok for the past year. I think we are experiencing a flare.
The sores are back in her mouth, she sometimes cant make it to the bathroom, she has circular marks with red pimple like things on her legs.

Does anyone have any info or stories they would like to share that have children with crohns?

She is on the honor roll at school but complaines alot about not being able to concentrate.

She is more on the heavier side than the skinny side.

Thank you
Amy

 

[Crohns08]

Welcome to the forum Amy! Sorry that it's under the circumstance of your child having crohn's though. I know what it's like to be young and have the disease, I was diagnosed when I was fifteen and have been battling the disease and trying to get through school for almost two years now. I can definitely relate to your daughter not being able to concentrate, it's hurt me on quite a few exams getting so distracted. It gets easier with time, but it's still difficult, especially if the lecture isn't exactly attention grabbing. I try to take a lot of notes in those cases.

 

[RobK]

Amy, my personal experience with LDN has been remarkable!

I don't know of any children personally but there is a current LDN trial for children with Crohn's going on at Penn State.

You can probably find out more info out at www.ldnscience.org

Good Luck!

RobK

 

[Astra]

Hi Amy
and welcome to you both!

This must be a very horrible frustrating time for you, every mum wants the best for their children and to keep them healthy, we're here to support you, and offer lots of advice and info.
I have those red marks on my legs too cos of the Pred, but I'm tapering off now, on 5mg, and hoping not to flare up again, if I do, I've had the go ahead for Humira. If you are reluctant for your daughter to go back on Pred, have you asked about any of the biologics like Humira? Or an immunomodulator like Azathioprine or Mercaptupurine? I
IMO Pentasa is not strong enough on it's own, needs a back up, it's ok whilst in remission to maintain and prevent, but not whilst flaring.
Good luck and any questions, fire away
Lotsa luv
Joan xxx

 

[bostitch7]

Thank you yes the Pentasa is just to maintane the prednisone was to get rid of the puss in her bowels and get her through her flare. So far it has been working. We are still figuring out what foods set her off. I guess it is a learning experience for everyone as what effects some doesnt others and what meds work for some dont for others. Is interesting to read the messages on here. I have never even heard of Crohn's before this.
Have a good day

 

[bostitch7]

Hello Yes she was on predisone when first diagnosed. She seems to do pretty good with the pentasa. I believe we have a good GI he is from a Childrens hospital and is very easy to talk to. I think that helps and my daughter will talk with him too.
I was told the sores in the mouth was a key to them finding the crohn's the sores on the leg are also crohn;s related as it is listed as a symptom. Thank you for you comments i read them all.

 

[Jennifer]

I saw a very good doc at the children's hospital in Stanford, Ca. Best doc I ever had.

As for the rings on her legs. Any chance it could be ring worm? Its common among children.
http://www.webmd.com/skin-problems-and-treatments/tc/ringworm-of-the-skin-topic-overview

 

[Creepy Lurker]

The flagyl is an antibiotic not really good for anything I think.

Flagyl (Metronidazole) is one of only 3 from a long list of different medications I've tried that will do anything at all!

I asked the doctor how it helps with Crohn's. He told me that nobody knew.

 

[Astra]

Metronidozole saved my life 3 months ago along with the Pred, by clearing up an infection caused by narrowing, and I avoided surgery cos of it, also I've used metronidozole before for a tooth abcess, of course it does something, it's an anti biotic!

 

[Lisa]

I can't handle the flagyl - makes me even sicker!

Bostich7 - You can let your daughter know that a 'normal' life IS possible with this disease!.....You need to make sure the Drs stay on top of it...and, from experience (I was dx @7 years old, almost 40 now!)........make sure YOU stay on top of her symptoms - I was in denial for many many years, which caused to to allow myself to get physically quite run down, tot he point of going from the Dr office straight to the hospital.....more than once.....

Been on many medications, remissions started out pretty good - a few years - but slowly got shorter and shorter......I have been on Remicade now for over 4 years and feeling pretty darned good!

Having crohn's doesn't stop you from an active school life either (unless you LET IT!).........I played volleyball in HS, was a cheerleader, skiied, etc.......and am still pretty active.......

Lisa

 

[Jennifer]

Crohns can stop you from having a normal school life. It depends on how bad the disease is affecting you and that varies from person to person. Some are able to live a normal life and others like me collapsed on the playground. But I do agree that you should stay on top of her symptoms and encourage her to do the same.

 

[Lisa]

Crabby - when I was in school, I had an 'unlimited pass' to use the bathroom....no waiting for the teacher to tell me it was ok to go.....lol.....thankfully while in grade/high school my symptoms were kept under control enough for me to have a fairly normal time......at least as far as the crohns'......I did have mono, horse riding accident, etc.....all those 'fun' things kids do to get hurt and/or stay out of school!

 

[sarahhh]

Hi I was diagnosed with Crohn's disease at 13. I had to do most of my exams in hospital attached to numerous drips etc. I got told I would have to resit a year but thankfully did well enough in my exams. I did however end up resiting a year of A-levels but I am now grateful I did and I am in my fist year of university. I never ever thought I would get here but I did in the end but not without a struggle.

There is hope out there, just hang on

http://diaryofacrohnskid.blogspot.com/