23 June 2004 First General Update- We need to test for Growth Hormone Deficiency

Well, dang, drat, dadgum, phooey, bissen fissen skissen, and every other kind of interjection of a disappointed nature that you can think of. It's never a good sign when the pediatric endocrinologist calls you herself with the test results.

 

Everything they tested my 15-month-old Virginia for, was normal- except for IGF-1 (Insulin-like Growth Factor-1), which was definitely not normal. She said there is a very broad range of "normal", broad enough that usually when a kid even tests within the normal range but at the bottom of the range, they want to look further. The broad normal range was 51- 303, and she said usually under 65 or so? (I can't remember... did she say 75? 80? 100? My head was spinning and I wrote down Vi's and the normal range but didn't get everything written down…), they would look further even within the normal range. But Virginia's IGF-1 was 28.

 

So in August, after we wrestle the insurance company into submission (can't wait to tackle THAT endeavor), she's going to spend  ~4-5 hours with an IV of medicine which stimulates the production of growth hormone, and 6 blood draws, so they can test to see what's what. They might find that she can make it but her body can't use what she makes- that something is interfering with her body using it. They might find that she can make it if stimulated but her body isn't getting the stimulation telling it TO make it, so it's the stimulation she lacks rather than the ability to make it. They might find that even with stimulation she can make some but not enough, or they might find that she can't make any at all regardless of stimulation.

 

Daily injections of growth hormone for years might be the treatment option of choice, depending on what they find out. But I am not thrilled with that option- the synthetic has only been around for ~20 years and thus there are no long-term studies or effects known...  daily injections of something that we don't know the full implications of what side effects there are?! Crap! But intentionally leaving her as a dwarf (midget- the proportional kind of dwarfism) doesn't seem like the thing to do either... oy vey. Anyway, I am not going to borrow trouble. Maybe there is something blocking her using growth hormone she already makes and there is a different treatment option available, I don’t know, I need to research it.

 

And there are still around two months before I have to face any of it, so I am going to just enjoy my baby for now. And pray a lot. And do some research.

Love,

Delilah

P.S. Here is a picture of Virginia the day she learned how to push the stool over to the counter and climb it and remove the foil from the gingerbread and shove it by the handfuls into her mouth in total silence, at the speed of light, when I was standing 3 feet away with my back to her and didn't know she could do any of the above!