I was wandering if anyone has dealt with this issue. Wyatt had a bone age x-ray one and it was over 3 standard deviations below normal. His growth hormone (IGF-1) level was low normal and then undetectable. We are going to have a growth hormone stimulating test done in a few weeks. Has anyone done this before. The endocrinologist was kind of confused why we were even doing the x-ray and lab before starting steroids because he is in the 75% on the growth chart. He decided to the stimulating test so if we would need growth hormone maybe the insurance would cover it. I guess I jsut keep thinking about it, and wanted to see if anyone else was in this boat. I am tired of being in all these boats, it would be nice if we could just stay in one and ride it.

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Hi Jessica! We had the growth hormone stimulating test done in Cincy. It was about a 3 hour test...and honestly, I thought that was how they tested for growth hormone levels...what test did they do on Wyatte to show his was low? Anyway, Seph was low on the bone age before steroids as well and then steroids really stunted his growth. We finally did the stimulating test and found this HgH normal. But because of the bone x-ray and the severe growth failure, insurance is still paying for the HgH.
The test is an IV, Seph was 'admitted' to a room and was given some meds. Then there are several blood draws (through the IV) and more meds. At some point the meds make him sleep, so, he slept most of the time. After 3 hours it was done, then we waited on results.
I know you just came back from Cincy, but I am wondering if you could wait and do the Stim test when you go for your next visit? They could just build it into your appts (you know how I am about Docs down here!!).

I can't imagine how tired you are of all of this between Wyatt and Wynston! I will pray for that stable boat for you!!! Call me if you need or want!
Was the bone age x-ray you are referring to a DEXA scan? DMD boys tend to have low bone density even before starting steroids. No surprise there unfortunately. :( There are several studies (some done at Ohio State Univ.) proving this fact. I do not think there should necessarily be a connection between low bone density and low growth hormone levels in DMD boys, but some studies also prove that DMD boys have shorter height than their non-DMD siblings, adding steroids to the mix accentuates this dramatically.
THe bone age that Seph has done is an xray of his hand. It is different from the Dexa.

Ofelia Marin said:
Was the bone age x-ray you are referring to a DEXA scan? DMD boys tend to have low bone density even before starting steroids. No surprise there unfortunately. :( There are several studies (some done at Ohio State Univ.) proving this fact. I do not think there should necessarily be a connection between low bone density and low growth hormone levels in DMD boys, but some studies also prove that DMD boys have shorter height than their non-DMD siblings, adding steroids to the mix accentuates this dramatically.
Same as Seph's, Wyatt's was a bone age xray of his hand. He also had a DEXA scan which was normal for age.

Ofelia Marin said:
Was the bone age x-ray you are referring to a DEXA scan? DMD boys tend to have low bone density even before starting steroids. No surprise there unfortunately. :( There are several studies (some done at Ohio State Univ.) proving this fact. I do not think there should necessarily be a connection between low bone density and low growth hormone levels in DMD boys, but some studies also prove that DMD boys have shorter height than their non-DMD siblings, adding steroids to the mix accentuates this dramatically.

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