Crohn's Disease Forum » Parents of Kids with IBD » Where we are now and how freaked I am

01-23-2018, 08:32 PM   #91
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

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Wait, so she had a FCP of 900 and she had a pillcam that showed Crohn's right? AND she's had scopes show inflammation recently? In her colon?

But she doesn't have Crohn's?!

The weight loss is concerning. Has anyone talked about a G tube? I suppose they will if she is diagnosed with a motility issue.

A G tube/GJ tube was MUCH easier on my daughter than an NJ tube, which made her nose and throat sore. It is a surgery, but a minor one. Couple of days in the hospital. The Mickey button is small enough that no one would have to know that she has it.

I would talk to your GI team about a G tube because eventually your home health company will want the pump back!

Sending hugs - I hope the CBD oil helps!! It is supposed to help with appetite and nausea.
Yes it's crazy. All true statements.

No one brings up g-tube but us. They promise a lot but don't follow through. Won't she still need the pump with a Mickey?
01-23-2018, 08:47 PM   #92
Forum Monitor
Maya142's Avatar
Oh yes, she will. But I just meant if there are no plans for a G tube and she isn't continuing with the NG tube, the home health company will want the pump back.

Failure to thrive or inability to maintain her weight should be enough for her to get a G tube. She doesn't need a motility dx or a Crohn's dx for a G tube. At the very least they should do that so she doesn't get even more malnourished while you are figuring out a diagnosis.

Any plans for a second opinion? Maybe another GI that specializes in IBD? You could even do a record review at one of the big children's hospitals - you won't have to travel then.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18

Crohn's Disease Forum » Parents of Kids with IBD » Where we are now and how freaked I am
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