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A New Journey

by Kmama on May 22, 2013 · 22 comments

in Jack

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.

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{ 22 comments… read them below or add one }

1 Shari May 22, 2013 at 8:01 am

Very nicely written. I really didn’t know any information on GHD and I feel that I can understand it better now.

Kudoes to Jack for making a very important decision in his young life right now.

Please keep us posted on his progress!

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2 Kmama May 22, 2013 at 11:30 am

Thank you so much! Even though we’ve done so much research, I feel like we hardly know what we’re getting into. It will definitely be an experience!

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3 Shana Putnam May 22, 2013 at 9:00 am

Hey I am all for giving your kids the best advantages in life. My husband wishes he was taller (he is 5ft 6) and it has bothered him for years. I also have twin uncles. One of which had to do growth hormone therapy as a child. He didn’t grow for 2 years and back then it was almost impossible to get doctors to listen to a woman. But once he did it his growth picked up and now he is normal as an adult. Actually a bit tall. I will be praying for Jack and for you guys and know that I am here for you in support!

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4 Kmama May 22, 2013 at 11:34 am

I didn’t realize your husband was 5ft 6. And since you said it bothered him, that’s what we are trying to avoid for Jack. At first, the comments were made TO him, but about him, when he was out of ear shot. But recently, people are remarking directly to him about his size. He handles it well, but I know it will eventually become an issue.

From what I’ve learned with my research, your uncle probably had the natural growth hormone, which was taken from cadavers and in limited supply. Now it’s synthetically made and more readily available. Thank goodness for scientific advances!

Thanks so much Shana!

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5 Shana Putnam May 22, 2013 at 12:01 pm

Yep he is! And I am 5 ft8 so that is a little strange for him I think. It is so different being small for boys than it is for girls. Petite girls are well accepted but not so much for boys. We get teh opposite for Blaze because he is so big for his age at 5 years old. He is 52 inches tall, 64 pounds, wears and 8-10 in clothes, and a 3 in shoes. But he is constantly hearing how big h e is and I don’t want him to get a complex because of that either you know? We can only do the best we can for our kids.

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6 Shana Putnam May 22, 2013 at 12:01 pm

And he won’t be 6 until August!

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7 Janna May 22, 2013 at 9:09 am

You know what’s best for your child! Thanks for being so brave and telling us about it, I never knew such a thing existed. Keep us updated on how things go- I’ll be thinking of you guys.

Also- it is different for a boy than a girl, it’s really hard for a boy to be the shortest. My husband was only 5 feet until he was 16, (then he grew half a foot over the summer). I know that was difficult for him! Sports are tougher too. Size issues were part of the reason we kept Jacob back (he was a fall birthday).

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8 Kmama May 22, 2013 at 11:36 am

Size issues were part of the reasons, though not the whole reason, that we had Jack repeat kindergarten as well.

I don’t know if a lot of people are vocal about growth hormone deficiency/therapy, or if it just isn’t prescribed that often, but you’re right, you don’t hear a lot about it. It was hard to do research on it as well.

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9 Shana Putnam May 22, 2013 at 12:03 pm

Haha, size was a big reason we DIDN”T want to hold Blaze back. His pediatrician was quoting bullying statistics and such to me saying that for bigger kids that they will be targeted so kids can brag about getting the big kid. Good thing he passed lol.

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10 Jackie May 22, 2013 at 9:23 am

I think that what you’re doing is great and that you guys need to make the best decisions for yourselves, your kids, and your family. And this is exactly what you did.

I think that it’s great that Jack really wanted to do this though. My guess is that he’ll waiver once in a while because of the daily injections but that’s probably normal for a little kid.

I wish you the best of luck in this journey and know that I’ll be here supporting you all the way.

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11 Kmama May 22, 2013 at 11:37 am

I’m sure he’ll get frustrated or tired of the shots from time to time, but hopefully the progress that he’ll see (fingers crossed) will help to keep him motivated to keep doing the injections.

Thank you!

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12 Nicole Q May 22, 2013 at 10:37 am

Hard post to write. Thank you for being true to your blog.
As always, such an amazing mama…

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13 Kmama May 22, 2013 at 11:38 am

Thank you lady.

It was a hard post to write. I had a hard time with the tone and rewrote it a few times.

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14 Jennifer May 22, 2013 at 10:49 am

I’m not sure why anyone would judge what you are doing in a negative light. You are doing what is best for your child. That’s what we all do. Maybe we wouldn’t make the same decision in the same circumstances, maybe we would. Doesn’t matter. What matters is that you are an awesome mom doing what you think is best for your child. I think that’s great, and I really admire Jack for being so mature and working with you guys to make a decision. He may be behind in height, but he’s light ages ahead in maturity.

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15 Kmama May 22, 2013 at 11:41 am

You would be surprised at the judgment. It’s hard to explain, but a lot of people feel that growth hormone therapy is more cosmetic than medical. And then there are those that will tell you that Jack is the size he is because that it was God intended. There are a lot of different arguments against it. For us, learning that it’s a completely safe therapy, with the most common (though still pretty infrequent) side effect being growing pains, it just made us feel so much better.

Thanks so much!

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16 Mary May 22, 2013 at 11:09 am

Hi, I don’t comment much, but read every day. We met on the All-Stars board.

A friend of mine also recently made the decision to provide their son with growth hormone therapy, after having the same tests, with similar results, as you’ve written. They’ve seen good results already, with their son gaining both weight and height in the first few months. They, too, have a regular follow-up routine.

You’re making your decision on what you all think is best for your son. In my mind, there’s no way to negatively judge that. If he were deficient in something besides growth hormone, I’m sure you’d attempt to supplement that, this shouldn’t be different.

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17 Kmama May 22, 2013 at 11:43 am

Hi Mary!

How are you? Thanks so much for reading!

I’m glad your friend and her son are seeing good results. We’re hoping that we’ll see the same.

Thank you for the kind words and encouragement. I completely agree with what you’ve said. It amazes me how some people judge without fully understanding.

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18 Southern Angel May 22, 2013 at 11:57 am

I think it is amazing the things we can do with science and medicine now to enable people to reach their full potential. You are doing what is best for Jack to have the best life possible. Great that he is on board as well and so interested in learning to give himself injections. Sending love and thoughts that this works amazingly well for him.

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19 Shell May 22, 2013 at 12:16 pm

I know you don’t do things without lots of thought and research. I know you’ve carefully considered everything. And it sounds like you have made the best decision. I hope that this is successful!

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20 Rachel May 27, 2013 at 2:38 am

I know you guys didn’t make this decision lightly and I’m glad you feel safe writing about it (because I think you aren’t going to run into any judgement here on your blog :)

When I suddenly lost my hearing, I was placed in a trial program where they used strong steroids that not only didn’t bring my hearing back, they stunted my growth for years (during the crucial growing years – you know how that is). I GHT had been an option for me then – since I should have been much taller based on my 4-year old measurements.

Keep us posted – if you feel comfortable. Hurray for Jack’s positive attitude!

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21 Elaine A. May 28, 2013 at 1:51 pm

This is VERY interesting to me because my oldest son is also pretty small for his age. He always has been. I would not have considered this at all before reading your post. I may talk to his doctor the next time we go.

And good for you for doing the research and making an informed decision! And good for Jack for being SUCH a trooper!!

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22 Stefanie May 28, 2013 at 5:49 pm

I wish you the best of luck with this!
It sounds like you made a good decision, and I’m looking forward to hearing the updates!

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