Today my husband and I made the decision to begin our 10-year old daughter Natasha on Genotropin, a form of human growth hormone. If she reacts favorably, she will inject the drug daily for the remainder of her growth period. Given that her current bone age is roughly 7 1/2 years, this could be upwards of 5 years.
In my web-based information search I found no personal stories of anyone who has used this drug or given it to their child. Therefore, I decided to begin this blog. In it I will chronicle our experience, including the nurse home visit, which augurs the first injection, our experiences with the Pfizer Bridge program which makes the drug, effects, side effects, emotional effects– whatever comes up. I hope this will help others and possibly establish a forum for parents who make this scary decision.
Background:
A few years ago I noticed that my daughter was very, very small for her size. I am only 4′9″ and my husband is 5′8″, so we never expected her to be a giant. Nonetheless, she seemed excessively small compared to other children. Additional cause for concern was the fact that I am shorter than either of my parents, neither of whom is very tall, which indicates a possible hormone deficiency in my background. As puberty was not that far off, my gut told me we should check this out.
An endocrinologist from Denver Children’s Hospital began tracking Natasha’s growth. After a year and a half it emerged that her bone age is delayed by a few years (good), but that she is not growing at the pace of a normal child (bad). Thus, every time we visit the doctor her projected height–based on parental actual height– falls. Upon the doctor’s recommendation, we applied for insurance coverage.
Last week I found out we were granted coverage. Today three months worth of the drug arrived, along with a tamper-safe needle disposal bin. On Tuesday we will get our “starter kit,” which among other things contains the injection device, designed to look like a pen. Somehow I don’t think too many kids are fooled by this. I will also be contacted by a nurse, who will come to our home and teach us how to inject our child.
I visited the Genotropin official site and cried through the video demonstration of a young girl preparing the drug and injecting herself with the pen. She seems to think it’s no big deal but, then again, that’s her job.
To me right now this is a big deal. I go back and forth between being very calm and completely freaked out. My husband has been out of town all week and I am loathe to talk about this to her without him, so at this point all she knows is that we have been approved by insurance. So far she took it pretty well. I think is beginning to be conscious of how short she is and wants to grow. Over the weekend we will broach the topic in detail, talking about the nurse coming etc.
If anyone has any experience or comments or knows of any other blogs about this, please share.
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3 comments:
So sorry about this Debby. I have experience with only one aspect: shooting myself with a needle. I had to take Procrit by needle when I was on chemo. It was a bit painful because it needed to be massaged in after injection - that was the part that was painful. People who saw me shooting it into my abdomen were horrified. But it really was no big deal. I think when you have to do something, you just do it. It becomes YOUR version of normal...
Oh, and Natasha is sooo beautiful. Her beauty is ENHANCED by her tininess. She is a tiny doll. Seriously, a gorgeous, gorgeous child who will be a gorgeous, gorgeous woman. Small or very small, doesn't matter, whichever it turns out to be.
Oh...and one MORE thing...I did not reach my mother's height (5'2'), nor the female equivalent of my father's (6'1"!), and my parents took me to an endocrinologist when I was a kid, and all was normal, just a fluke that I am shorter. Maybe you too are just a fluke? Of course, that doesn't help you with Natasha. But I just thought I would add that irrelevant comment.
When you put all those flukes together in one family it just compounds my suspicion that there is some weird hormonal deficiency. Lots of self-blame recently, but I think I've gotten past that. Natasha may be in this position because of my genes, but she is decidedly not in it because of anything I consciously or purposefully did. Although she bugs the ____ out of me lots of times, I'd do anything I could to make her life easier, not harder.
Thanks for the kind words.
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