19 July 2004 – Second General Update: Results of the Growth Hormone Stimulation Test

Thank you all for your prayers and thoughts as we have been going through this situation with our 16 month old Virginia. Her growth hormone stimulation test was last Thursday at Children's Medical Center.

The testing process was not fun, and involved a lot of screaming and being held down and more screaming, but overall, went pretty well- better than I expected, because:

1) She did not scream the entire time, and

2) One person from my church took care of Isaac during the test (thanks, Debbie!), and

3) Two people from my church, Lisa and Alexandra, came and stayed with Virginia and me for much of the time of the test (and I even got to visit a little with each of them, as Virginia slept between blood draws, and be comforted that I was not alone when she screamed- blessings upon blessings!), and

4) She did not have any bad reactions to the tests. Given that a bad hypoglycemic reaction is a possible side effect to the test, and that is what hospitalized Isaac when I was pregnant with Virginia, I am sensitive to that and was grateful not to go through it with Virginia.

 

So that was all good news. The results from the tests are in today. A passing score on the stimulation test would have been a 10 or higher. (High range could be up to ~45, I believe.) A score under 5 would mean her body was not able to produce enough growth hormone, even when stimulated synthetically to do so, to be able to sustain health. A reading from 5-9.9 would be that she possibly can produce enough GH to sustain health but not enough to grow to be a normal adult height, normal meaning 4'10" or higher- tall enough to drive a car safely without extra measures being taken, etc.

 

Her reading was 5.8, which is obviously, quite low. The test results can fluctuate from day to day, but this is definitely too low for her to be able to grow to her normal adult height potential (which given Kurt's and my stature, and our family members' stature- the gene pool, basically- would have her being average height) and almost definitely too low to be able to reach even a "normal height" at all- for example, her genetic pre-disposition might be to grow into a 5'3" tall woman, but in fact she might not even grow to be 4'6" without hormone supplementation, hypothetically. If it had been a more equivocal answer, we would have preferred a wait- and-see approach, but this answer is pretty clear. I am grateful for that, even if I would have preferred a DIFFERENT clear answer. Clear is still good. If the answer had not been very clear, I would not have jumped to treat, indeed I might have refused to treat altogether, and would definitely at least have delayed. I am not thrilled re the idea of injecting Vi every day with anything. But... I can feel peaceful about this because it was clear- a resounding failure of the stim test thus being better than a borderline result, for me.

   

When she is finished growing, as a teenager, she will need to undergo another stimulation test to verify that she can still produce enough growth hormone to sustain her health, and being monitored, probably quarterly, by an endocrinologist, will be a lifelong norm for Virginia. It is, I suppose, a blessing that she will never know anything else- the daily injections will be "normal" to her, and her prognosis is excellent, with the meds. She is a joy and a boon to our family, and even if this is "wrong" with her system- she is still perfect to ME. We will all adjust.

 

Now, I’m off to do battle with the insurance company. The endo's office informed us that they put up a fight frequently, even though theoretically they cover rGH. Since at Virginia's size the injections run about ~$400 a month, going up to ~$4000 a month at current rates, by the time she is in puberty, there are many hoops to jump through to be able to obtain the meds, at a price we will be able to manage. So prayers that our path to receiving the meds she needs will be made straight, and that Virginia will respond well to the meds once we obtain them, would be welcome.

 

I am absolutely convinced that God has designed Virginia and that everything that has happened with Isaac's blood sugar and us meeting Dr. Ham and then her early intervention with Virginia because of it, etc. brought us right to where we are now. What the purpose is for us facing this challenge, I do not know, but it does not feel at all random to me. I am right where I am meant to be, and am under the protection of the One who created me, and so is Virginia. We will be okay. (But the insurance fight and adjusting to the daily injections is still going to suck.)

 

Delilah, Kurt et al