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Mom to a 2 year old with Crohn's - our story

Z

ZMommy

I have a 2 1/2 year old son with crohn's disease. He first started presenting with sypmtoms around 11 months old. He had lots of vomitting and bloody diarrhea. We went through allergy testing for milk and soy allergy which was negative. We were then referred to the GI team at Cincinnati Children's and got a confirmed diagnosis on his first scopes. He had many ulcers in his stomach and colon. That was in May 2014. He was initially put on Imuran which didn't work. We then went to Remicade and that didn't work. We were in the hospital for flares several times throughout this process. He had a couple more scopes - one of which perforated his colon.
We went to Humira every 2 weeks and eventually to Humira every week along with Methortrexate. He has never achieved full remission and recently had an Ileostomy at the end of September. The following day after surgery the ileostomy prolapsed and he had to have emergency surgery for that. So far - it has not prolapsed again but the fear is always there that it will happen again. We have been to the hospital 4 times since the surgery (in 2 months) for dehydration, infection and a virus.
He is a very active little boy and he has a happy disposition and even on his worst days still is a happy toddler! He has been through a lot in his 2 1/2 years. He is small (5th percentile) and we go back to his GI dr. in a couple of weeks. If he hasn't gained weight - we go to NG tube feedings. I'm really hoping we can get him to eat!
That's our story so far!
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
Hi, I am sorry for your little guy but glad to read he is a happy boy!! have the GI team suggested complete Enteral liquid diet to acheive remission? EEN diet can be done with the NG tube or drinkable versions too. I think this could really be something interesting to discuss with the medical team.
 
tots

tots

Location
Austin, Texas
I started getting sick before I was 5 and I can remember the trips to the ER. Back in "my day" they had no idea what it was.

I am so sorry your baby is so sick! To me that kinda puts to rest the environmental impact, the prepared foods in our diets. I think it just is!

Has he ever been on Prednisone or Endocourt?

I hope you live near a really good Childrens Hospital, at work we are collecting for the Childrens Miracle Network and I am going to make an extra donation!!

Hope you find relief soon!


Lauren
 
Z

ZMommy

To answer a few of the questions... We did an enterel diet prior to the surgery and it didn't seem to help. He has been on and off very high doses of prednisone. Prednisone really helps him but given his age they don't want to keep him on it very long. Since it only masks the symptoms, they come back a couple of weeks after he stops taking it.
If he doesn't gain weight, i'm sure the Enteral diet will come back into play. Time will tell..
 
my little penguin

my little penguin

Moderator
Staff member
Did they do genetic testing?
Very early onset ibd tends to have immunodeficiency and other diseases linked with it and some even mimic ibd.
Most cases require different routes than traditional adult ibd meds

Emory university is one place that does the testing
It takes 12 weeks to get results though

http://geneticslab.emory.edu/tests/MM160

Although the genetics of IBD is believed to be common and complex, over 150 genetic loci have been described to be associated with IBD. The genetic contribution of the majority of those common loci towards explained heritability or their effect sizes are low. Recent studies have revealed an increasing spectrum of human monogenic diseases with high effect sizes/penetrance that can present with IBD or IBD-like intestinal inflammation. A substantial proportion of patients with those genetic defects present with very early onset intestinal inflammations, particularly if the onset of IBD occurs in subjects less than 10 years of age. There is also considerable overlap between primary immunodeficiency and very early onset IBD. Over 20 monogenic defects/genetic loci have been selected in this genetic diagnostic panel to test for very early onset IBD or IBD-like diseases. In addition to IBD or IBD-like diseases, these monogenic disorders also overlap with immunodeficiency affecting granulocyte and phagocyte activity, hyper- and autoinflammatory disorders, defects with disturbed T and B lymphocyte selection and activation, and defects in immune regulation affecting regulatory T cell activity and interleukin (IL)-10 signaling.

EGL is offering a next generation sequencing diagnostic gene panel for very early onset IBD or IBD-like intestinal inflammation. The Inflammatory Bowel Disease Panel will enable the fast, accurate, and cost effective sequencing to:
Identify mutation associated very early onset IBD (onset in less than 10 years) or IBD-like diseases
Make a molecular diagnosis with the basis of pathogenesis
Obtain rationale for patient-specific early intervention with emerging or experimental therapeutics and cell based approaches
Screen family members for carrier detection and genetic counseling
Click to expand...
Ds is having this done
No results yet
 
Z

ZMommy

We did do the genetic testing from Emory.. the results came back a month or so ago and they did not find anything helpful unfortunately. It didn't really point to anything. They have said that Infantile Crohn's is extremely hard to treat. All of the medications are developed with people who are a little older (late teens to 20 or 30's). babies metabolize medications differently and they have a harder time finding the right dosage and right medication (so I've been told anyway). Plus the options are limited for meds. Entivio isn't approved for his age - but if we need to go that route at some point they may be able to try to get it approved as experimental.
 
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