10 year old daughter just diagnosed with Crohn's

[countrymumkin]

Hello - having just had a diagnosis of Crohn's for my 10 year old daughter I am in the process of trying to find out as much as I can about this condition in children.

For years my daughter has been slow in her growth (v. low weight to height and delayed bone age). I have always thought it was coeliac disease as my mother has it and my younger daughter was unexpectedly diagnosed with it 2 years ago. Whilst we were waiting for our next regular appointment with our gastro, my daughter started to complain of pain in her stomach and bleeding from her bottom. She was become more and more tired looking and losing weight. I spoke to our gastro who took blood and stool samples and two days after this got my daughter in for a MRI and to start an enteral diet. 2 weeks after this she has just had a colonoscopy and endoscopy which has diagnosed inflammation (ulcers, cobblestones etc) in the bowel. The MRI also confirmed Crohn's. She is now on an exclusive Modulin diet for 8 weeks.
I really hadn't expected a diagnosis of Crohn's and my husband and I are still reeling from it. My daughter seems to be coping well although I'm not sure that yet she realises that this condition may well flare up again.

Anyway that's me/us.

 

[my little penguin]

Please visit the parents section
Lots of support and resources there
Ds was dx at 7
He is now 13 so you can find a new norm with the right meds

Tagging
Maya142
Clash
Farmwife
Pilgrim


Parebts section

http://www.crohnsforum.com/forumdisplay.php?f=49


What meds have they started to maintain her after een is complete
The Crohns will flare and most start maintenance same time as the een since maintenance takes 6-12 weeks to be effective

GI are now leaning more towards mtx vs imuran since there is a lower risk of lymphoma
Being in the U.K. It will be hard for her to go top down (start with biologics )
A lot of GI are doing that to keep the intestine as healthy as possible as long as possible and avoid surgery within 5years
Currrnt surgery rate for kids on immunosuppressants is 75% at 5 yearspost dx

 

[Farmwife]

Hi and welcome.
My dd was dx at 3 but is 8 now.
She still drinks her EN but also takes Remicade and Imran.
It took her a long time to get near remission but we're getting there (hopefully we're there).
Please ask as many question as you need.
We're all here to help!

 

[Maya142]

Hi and welcome!
As has been said, now MTX is being used more than Imuran. Typically EEN or steroids are used to induce remission (EEN is the formula only diet for a certain number of weeks, like your daughter is doing) and a maintenance med is started at the same time since they take a long time to work. In the US, biologics are being used sooner to prevent complications, but in the UK, immunomodulators like Imuran/6MP/MTX tend to be used first.

The first year tends to be tough while you are trying to figure out what works for your kiddo. Once you find the right combination of meds, things get better.

There is lots of great info on the Parents Forum which is specific to kids.

Formula (like Modulen) is great for growth and weight gain, and kids often continue it (supplemental formula in addition to the regular diet) when they are done with EEN.

Good luck!!

 

[countrymumkin]

Thanks everyone for your welcome and comments. I have found lots of useful information already. I have no idea at this stage if my daughter will be given any medicines - I think the plan is just for the Modulin diet. Will find out more at our appointment this week.

 

[my little penguin]

Crohns in kids needs maintenance meds unfortunately
So please prepare yourself
The modulen will calm the inflammation in her gut
But once food is restarted the inflammation will come back
The maintenance meds will stop the inflammation/damage from returning

 

[kimmidwife]

Welcome. I am so sorry you are going through this. It is not easy. I have 2 girls with crohn's one diagnosed at age 11 who is now 19 and one who is 8 diagnosed last year at age 7.