We’re embarking on a new journey, and I’ve been rather tight-lipped about it because I was afraid of judgment that we might receive. After talking to Jdaddy about it, that’s about to change. He reminded me that my blog is my blog and that the underlining intent of it is to chronicle our lives so that someday, my boys can read it and hopefully learn about their upbringing, as well as both Jdaddy and me.
In addition to judgment from others, this is a touchy subject for me because I don’t want my children to someday read my blog and think that they were every anything but perfect in our minds. Because they are. Perfect. We couldn’t have been blessed with better children.
So what is this journey? It’s the very long journey of growth hormone therapy for Jack. I’ve shared before that Jack is very small for his age. He’s consistently been in the 5th to 10th percentile for both his height and weight for as long as I can remember. It’s never been as obvious as it is now. Most of his friends have gone through a growth spurt within the past year, but not Jack. At almost 9 years old, he’s 48.5 inches tall and 48 lbs. Compare that with Nick, who is just over 5 years old and measuring at 45 inches and 45 pounds, which is in the 50th to 75th percentile for his age.
In the back of my mind, I’d always wondered if Jack would be a candidate for growth hormone therapy, but I never did any research on it. All I knew was that it was a long-term therapy, very expensive ($10,000 to $30,000 per year!), and hard to get approved through insurance. At Jack’s 8 year check-up, about 9 months ago, his pediatrician remarked on his size and suggested that we see a Pediatric Endocrinologist to have him evaluated. Our first visit with Dr. J was in November of 2012. At that time, Dr. J ordered some blood work, a bone age x-ray of Jack’s wrist, and scheduled Jack for a growth hormone stimulation test (stim test) in January.
The stimulation test required Jack to spend half a day in the hospital. An IV was inserted and he was given a sleeping pill. A special medicine that triggers the pituitary gland to release growth hormone was injected via IV, and then his blood was taken every half hour during a four hour period. We got the results a few weeks later.
The bone age x-ray showed that Jack has delayed bone growth and the stim test showed that he had deficient growth hormone in his system. While he marginally passed the first half of the test, he definitely failed the second half. At the time that we received the results, we were told that he qualified for growth hormone therapy based on his test results and that we needed to schedule a follow-up meeting with Dr. J to discuss our options and to ask any questions that we had for him. That appointment was scheduled for April 19th.
Jdaddy, Jack, and I, armed with the research we had done as well as questions, met with Dr. J on the 19th. We went to the meeting, fully intent on leaving without having made a decision, especially since Jack was really unsure about wanting to subject himself to daily injections. However, once we had heard everything and the doctor left the room, Jack surprised us and said that he wanted to go ahead with the therapy. We questioned him a little bit, but he didn’t waiver. Therefore, once the nurse came into the room, we told her that we wanted to go ahead and get the process started.
The process was pretty hands off for us. The nurse coordinator sent all of Jack’s medical records to the pharmaceutical company, who then contacted both our insurance company and the specialty pharmacy that we must use. It took about 3 weeks to get everything approved, which I felt was pretty remarkable. The reason it’s typically hard to get growth hormone approved is because it’s so expensive. We received a call from both the pharmaceutical company and the specialty pharmacy on the same day, letting us know that we would be receiving the medication in the mail. Once I received notice that everything was approved, I contacted our nurse coordinator and she made arrangements to come to our house to show us how to administer the injections. She came last night. Jack was very excited and wanted to learn to do everything. We all practiced on “fake skin” and then Jack received his first injection before the nurse left. He said it didn’t even hurt.
Right now, Jdaddy or I will administer the injections, but eventually, Jack will be able to do it himself. As I mentioned earlier, this is a long-term therapy. Each round is 4 months long. We will re-evaluate things after every round. It’s typical for children on growth hormone therapy to grow at least an inch during every round for the first year. Dr. J said that we would stop the therapy when Jack goes into puberty, to see how he does. If necessary, we can start the therapy back up once he’s gotten through puberty. The thing about growth hormone is that the injections don’t “stimulate” the pituitary gland to produce it. The injections are more of a supplement because Jack is deficient. If we decide to stop the therapy, he will likely fall back on growth once again.
As much as growth hormone deficiency (GHD) is about size, there are also other health implications for people who are GHD. Those include higher than normal rate of cardiovascular problems in adulthood, increased fat, decreased muscle tone, a higher risk of osteoporosis, psychosocial issues, and dental problems.
I haven’t focused much on the psychosocial aspect of GHD, but as Jack gets older, he’s become more aware of his size. Sometimes he has an “I don’t care” attitude, but other times he’s very cognizant that his size plays a factor in the sports that he plays as well as how other people treat him. Ultimately, the decision to initiate therapy was Jaddy’s and mine to make, but once we knew that Jack wanted to do this, I have to admit that I felt like we owed it to him to help him reach his height potential. The average height of a male in the United States is 5’9″. Projecting adult height is very difficult, as we learned when we asked Dr. J. He said his best guess, without therapy, would be at max, 5’7″. With therapy, he is likely to reach average height.
As of right now, I don’t plan on making Jack’s journey through growth hormone therapy a major focus of my blog, but there will be times when I update on his progress and how things are going in general.
In case you’re arriving here from an internet search, a great place for more information on GHD is The MAGIC Foundation.
This post linked with Things I Can’t Say for Pour Your Heart Out.