Thursday, January 28, 2010

He might be giant!

Okay, not really.  But the doctor called today to say that Jeffrey passed his growth hormone replacement test.  Before shots his IGF-1 was at 39 (normal is between 45 - 222 however most kids average 80-200). After growth hormone shots (which stimulates the liver to produce IGF-1) his IGF-1 was at 109.  So we know that Jeffrey can produce IGF-1, he just needs help.  I'm still learning about why he needs help this way, but at least he does not have to move forward with IGF-1 shots, which would be twice a day.

Good news: Jeffrey passed.

Other not-so-good news: Doctor wants him to take growth hormone shots 7 days a week before bed.

Jeffrey's blood sugar has not dropped below 70 since he started the shots!! So our #1 goal seems to have been achieved.  Now for the remaining questions the doctor (and we) still wants answered, and our own questions.

1. Why is Jeffrey of normal height, but IGF-1 deficient? (If I didn't explain before, IGF-1 is what helps our bones, muscles, organs, pretty much everything grow!)
2. What is causing the IGF-1 deficiency?

Our questions:
1. How long will Jeffrey need to take these shots or can we predict that yet?
2. Will this accelerate his growth?
3. Do we need to watch for high blood glucose now?
4. What is the long term prognosis?
5. Should we still pursue genetic testing?
6. What about Aly?

What I know for now is that I'll run to Topeka to Dr. C's office to pick up another sample GH pen tomorrow.  The nurse submitted the application to the pharmaceutical company and our insurance company.  This is a long process because GH injections and the dose that Jeffrey is on will cost $365 for 6 days worth of injections or about $1200 for 20 days (a pen with more meds in it).  Chad's comment today was "so we'll do the injections until he can take it orally." The answer is no.  Growth Hormone is not absorbed in the intestines (if I understand it right), so he may have to have shots until he is done growing or at least of average height - depending on control of his blood sugar. Some do continue into adulthood.

I do feel some relief in that it does seem that with this I am less likely to have to constantly worry about his BS.  Obviously there are financial concerns, especially if you consider the cost of the shots and if we need to pursue the genetic testing which is almost never covered by insurance.  Top this off with we still don't know about Aly. Our suspicion is that her low BS is caused by a different hormone malfuction, but we don't know what that will entail. 

So we just keep putting one foot in front of the other, praise God for the small successes and answers like we received today, and keep doing our best.

Jeffrey's MRI still planned for Tues. Feb. 2nd
Annual physicals for both Aly & Jeffrey on Thurs. Feb. 4th
Both Aly & Jeffrey go back to Dr. C (peds endocrinologist) on Tues. Feb. 16th

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