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Tuesday, October 1, 2013

D-Talk: C-Talk? DC Talk?

Haha!  DC Talk!  Get it?  You probably won't get it if you weren't involved with a church youth group in the 90's.  But that's ok.
 
Anyway....as you saw, if you follow me on Facebook, is that Jameson has been referred to a pediatric gastroenterologist out of Omaha, due to his bloodwork coming back and leading his pediatrician to believe he may have celiac disease.
 
The doctor spoke with Matt when she called, but Matt's words to me when he called were "Dr. Hamilton thinks Jameson has celiac, and we're being referred to a specialist."
 
I've known since D-day that Type 1 Diabetics are fairly prone to celiac disease.  And for eleven months now, I've been hoping that Jameson might be one of the T1's that avoided it.
 
There are still more tests to be run to be 100% sure, of course, but I'm frustrated.  I'm mad.  I don't get it.  I truly expected the celiac blood test to come back negative.
 
We've been mentioning to the doctors for about 6-8 months now his chronic diarrhea and distended belly.  We've been getting the same answer over and over again:  It's probably a rotavirus, it will pass. 
 
I was DONE with that answer last week, and made an appointment with the pediatrician.  I told her, straight up, that we've been pushed off for several months.  It's not normal for a child to have diarrhea like Jameson does and for as long as he has, and that his belly sticks out farther than his feet, but there's little to no fat there.  (Believe me - we no longer even attempt to put his infusion site in his belly - tears and heartbreak ensue.)  I told her I wanted him tested for celiac.  She asked me lots of questions - mostly about his poop - and ultimately decided that our concerns were valid.  The lab came right in there the same day - within about 3 minutes - and drew blood. That was last Friday.  Matt got the call yesterday.
 
Right now, we aren't to change his diet at all.  Suddenly removing wheat/gluten from his diet could skew test results, and we don't want that to happen.  Fortunately, he doesn't seem to be in any pain, so that makes things easier.
 
This pediatric gastroenterologist is based out of Omaha.  I have a co-worker who has a friend who has a daughter (ya follow?) who has celiac disease, and she sees this same doctor.  From what I understand, he comes to Rapid twice a year to see patients.  So it's not like we are going to get in to see him next week.  We could be waiting anywhere from 6 weeks to a couple of months to get in.  That's frustrating, but I just have to remember that this is South Dakota, and it's not like we live in a huge metro area.
 
So that's where we stand right now.  Still waiting on definitive answers.  Thanks for all the concern shown on Facebook.  Our little guy is tough and he'll be fine.  Fortunately, he's never going to remember what he did and ate before he was 2. 
 
Gah, I love him.

3 comments:

  1. WOO HOO! DC Talk!! One of my favorite bands.
    Good job on pushing for answers with Jameson. I see it more and more that you have to advocate and be persistent when it comes to healthcare. Especially with the changes coming to healthcare, many facilities are forced to do more with less so it can be easy to "slip through the cracks".

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  3. I love Dc talk, was one of my favourite bands when i was 14 years old. Hope your little guy get well, may God Bless your family.

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