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11 year old son recently diagnosed

After a 2 year journey of hospital stays and symptoms, my 11 year old son is about to be officially diagnosed next week with an MRI to peek at his entire tract and mainly the small intestine. He recently had a 3 night hospital stay after I took him to the ER for severe diarrhea, dehydration and stomach pain. It took 2 days to get him re-hydrated and back to baseline and they did an upper and lower endoscopy with biopsies taken throughout. 2 stomach ulcers were seen and the biopsies came back with eosinophils throughout his entire GI tract and his fecal calprotein levels are very high (I'm not sure the exact number). I'm sure there are more details that I'm leaving out that are important, but alas I'm not an MD.

His gastroenterologist sent us to an allergist this week to make sure that food allergies were not contributing to his issues and he was tested for every allergen known to man - nothing reactive. He also had a celiac panel done, negative.

In the last 60 days he has lost about 20lbs and just looking at him I can tell he's a sick guy. He's not currently complaining too much of pain or other symptoms really but then again I believe he's trying to downplay what is going on and his symptoms because he hates the hospital. He did not do too well after having General anesthesia for his endoscopies. He also is barely eating - I'm trying the best I can and he is drinking some ensure drinks daily but the doctor seems hopeful that his medicine that he's just started on will help improve his appetite. Here's what he is taking:

Prilosec (for the ulcers)
Apriso 0.375gm - 3 capsules every morning
Budesonide 3mg - 3 capsules/day for a week, 2 capsules/day for a week and then 1 a day.

He also takes concerta daily (which he has since he was 8) for ADHD

I'd definitely appreciate any advice as this is an overwhelming new journey for us and I'm worried about my guy.

Thanks for listening!
 
Welcome. I am sorry what you guys are going through. You also might try the section on here called Parents of Kids with ibd. I will tag Clash, Maya 142,my little penguin. Prayers to you all.
 

my little penguin

Moderator
Staff member
Sorry you had to find us
But glad your here
Is your son dx with Crohns or ulcerative colitis ?
Have they ruled out eosinophilic disorders ?
You generally don't test postive on skin tests for EoE E.G. Or EC
These are mixed ige disorders and tend to be the top eight allergens causing the issues ?

Have you had a second opinion ?
Top three kiddie places in the US
Boston children's
Philadelphia children's
Cincinnati children's


They will do record review even if you don't physically go there

Top egids (EoE e.g. EC ) places are national Jewish in Denver Colorado and Cincinnati children's


Aspiro is a 5-asa which only treats the top layer of the intestine
That works ok for ulcerative colitis (UC)
But does not work for Crohns
Crohns affects the full thickness of the intestine -not just the top
5-asa are not approved for the treatment of Crohns
As a monotherapy

Busonide is a steriod and can help
But only short term


Exclusive enteral nutrition (een -formula only -no food)
Can be used for 6-8 weeks instead of or in addition to steriods
This works as well as steriods
Induces mucosal healing and helps the kiddo with growth and weight


Ds was dx at age 7
He is now almost 14 (Seems like forever )

He has done een multiple times for flares
But continues 3-4 shakes a day to maintain weight
And growth
In the beginning it was peptamen jr (semi elemental formula -partially broken down proteins easier to digest absorb )

Now he is on neocate jr -elemental formula-amino acid based -no intact proteins
Only needs a few inches of healthy intestine
He does not have a tube (some kids do)
He does drink it all orally
Pediasure or kids boost can be used as well they are polymeric formula -whole proteins similar to food the hardest to digest but easier than food


Most kids require maintenance meds
Which can be scary for parents
Btdt cried got the t shirt

That said the goal is the get the intestine as healthy as possible as quickly as possible and keep it that way
And remember just because you like a safety profile on a drug or type of drugs doesn't help much if it doesn't fix your kid -then you are taking all the risk with little of the benefit


Meds - maintence
5-asa pentasa asacol aspiro etc
Treat the top layer
Most GI try these first but realize. After thirty days (without steriods)
You will know if they are going to help at all
GI equate them to giving a brain tumor patient an aspirin
Not going to hurt but not going to help either


Next up immunosuppressants
Most kids require these at a minimum
If you read about them they sound very scary since at extremely high doses they are used for cancer
But ibd kids get baby doses
6-mp and imuran can be used but are mostly not used any more since they have a high risk of lymphoma
6-mp/imuran takes 3-4 months to be effective
Methotrexate (mtx) is generally used since it does not carry the lymphoma risk
Mtx takes 8-12 weeks to be effective

Next would be biologics (top of the pyramid most effective but most costly )
Remicade is tried and true for kids with Crohns
Takes 6 weeks to be effective

Humira takes 3-5 months to be effective

Entivyio is brand new but can take up to a year to be effective

Stelera is brand new can take 3 weeks to 6 months to be effective



Fwiw Ds has been on
Pentasa
Asacol
6-mp
Mtx
Remicade
humira -over 5 years
And various combos of the above

Currently started Stelara with mtx


It's tough but your child can get better
And grow
Ds is above average for height and weight
Thanks to formula ;)
 
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