Monday, September 9, 2013

Endocrine Results

On August 30th Haven had a Glucagon/Arginine Growth Hormone Test. Which is to stimulate the Pituitary Gland to release Growth Hormone.

Our insurance says Haven had to be no higher than a 9.9 for them to pay for the treatments. If she was a 10 then they would not pay for the treatments at all. The doctor told me beforehand they have argued with insurance many times that 10 is no different than 9.9.

During the test Haven was given two doses of medicine(Arginine and Glucagon) for 30 minutes in the beginning that were to jump start her pituitary gland in to making growth hormone for the day. Then every 30 minutes they would draw a vile of blood and have it tested for the hormone. She was not able to eat for about 16 hours and she looked like a very white shriveled grape by the end of the day. The doctor read the results off to me and kind of laughed but tried not to because she wasn't really wanting to laugh. I only remember the beginning number and the ending number. So Haven started the test with a level of --- READY -- 0.01 and ended the 6 1/2 hour test with a level of 0.07 -----........

I stayed quiet on the phone and she repeated them. I said - "so she's below 9.9 right"....

So Miss Haven has not made growth hormone in a long time and will begin treatments very very soon.

So she has already sent the request to insurance and she has already sent the information to us on what we will need to do and who will contact us on how to get started. I have no idea yet what it will cost us. I will be contacted by insurance and by home health care on how it will be delivered and how it will be administered. She seemed a bit concerned at how long she hasn't had the hormone and that she would have to start her out slow because her body has been without it for so long that we would need to go slow for her bones.

But if low to insurance is 9.9 and our Haven is 0.07.......then we know she's definitely LOW.

1 comment:

  1. Friend to a sweet 15 year oldOctober 25, 2013 at 9:58 AM

    I appreciate your blogs here and the ones from back in 2009, and I am grateful to hear the tremendous advocates Haven has in her family. You have had a lot of contact with other families with children with ROHHAD, and I am hoping to find information to share with a family I work with. Their 15 year old has ROHHAD, is ventilated 24/7, appears to be fading, and their simple question is, "how will she die?"