Growth Hormone Testing and a New Direction
September 5, 2010 – Well as many of you know, about a week ago Tristan had extensive growth hormone testing of his growth hormone level and other blood values due to his lack of growth and weight-gain for over a year. It is good news and bad news. The good news is all of his levels are perfectly normal to include his growth hormone response. The bad news is his growth hormone response is normal.
Okay, I know you are likely thinking what could be so bad about his normal response and blood levels. Tristan is sufficient in his growth hormone response, which means his body produces the normal levels and response. Unfortunately, Tristan will still need growth hormone treatment, and insurance companies will cover the treatment only if there is insufficiency. Unless we can get Tristan on Dr. Germain-Lee’s research protocol, and the growth hormone manufacturer supplies it for free to those in the protocol, it will cost us about $40,ooo per year for the hormone until he stops growing in his late teens.
Dr. Germain-Lee said it is common for kids who have Albright Hereditary Osteodystrophy (AHO) to have normal growth hormone levels to still not grow. When these individuals are given the hormone, they can grow up to 8 centimeters per year (a little over 3 inches).
I feel like I need to sell everything I own and get a job at night to make that much money so he will not be a very small person. I do not want him to be so short he is picked on for the rest of his life. If he cannot get the drug paid for by the company, we will find a way to pay it.
So, we must wait now for Dr. Germain-Lee to get the drug from the company. She does not know when it will arrive, but it could be a long wait. We pray she will be able to get Tristan on her protocol so we will have the drug cost covered.