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Discussion Starter · #1 ·
Our endocrinologist called us last night. Dakota's IGF-1 (the product of HGH) was basically non-existant; so low it wasn't measurable. We expected it to be low. The endo had said anything below 25 was considered extremely low and we'd be doing hormone stimulation testing if that was the case. I think the results shocked even her. We now have an MRI on the 12th followed by an overnight stay for GH stimulation testing. We're either doing HGH shots once a day or IGF-1 shots twice a day.
 

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I'm glad you're getting answers.
Are you doing ok with the news?
 

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Quote:

Originally Posted by sbgrace View Post
I'm glad you're getting answers.
Are you doing ok with the news?
It is both good and bad. A part of me is happy because I've known for a long time that her growth was a concern. Call it mother's intuition but long before the doctor's were concerned I was. They always shrugged things off to her having such chronic illnesses but I suspected more. Seeing on paper that without a doubt something is abnormal is comforting in a way.

I'm very anxious about the MRI. I didn't get a good feel for what was going on inside our endo's head. She's not easily readable. The fact that she called personally at 9pm on a Sunday night and wanted to do an MRI within the week makes me concerned. We were expecting her levels to be low but not non-existant. Questions are flying around. What could be causing this? Will we ever know? Does this relate to the underlying issue we're searching for?

We're going to San Antonio next for a consult with a different metabolic specialist and from there we'll likely be traveling out of state for more testing. I know beyond a shadow of a doubt there's something wrong here. You don't have a kid with chronic lung, gastrointestinal, kidney, and growth problems, not to mention hypotonia and severe developmental delay without there being something underlying! I just hope we find out what it is eventually. It scares me that we've been at a standstill in terms of her medical problems and now we're starting to add things like growth to the mix that weren't an issue until earlier this year. She used to be a chunk and now she's beyond petite.
 

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Good luck with the MRI. I can see how having a doctor call you at 9pm on a Sunday night might be a bit alarming. I hope that you're able to find out what's going on with your wee one.
 
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