Hypochondroplasia kid: Lost GH Found perspective

What is hypochondroplasia?

Hypochondroplasia is a form of short-limbed dwarfism. This condition affects the conversion of cartilage into bone (a process called ossification), particularly in the long bones of the arms and legs. Hypochondroplasia is similar to another skeletal disorder called achondroplasia, but the features tend to be milder.

All people with hypochondroplasia have short stature. The adult height for men with this condition ranges from 138 centimeters to 165 centimeters (4 feet, 6 inches to 5 feet, 5 inches). The height range for adult women is 128 centimeters to 151 centimeters (4 feet, 2 inches to 4 feet, 11 inches).

People with hypochondroplasia have short arms and legs and broad, short hands and feet. Other characteristic features include a large head, limited range of motion at the elbows, a sway of the lower back (lordosis), and bowed legs. These signs are generally less pronounced than those seen with achondroplasia and may not be noticeable until early or middle childhood. Some studies have reported that a small percentage of people with hypochondroplasia have mild to moderate intellectual disability or learning problems, but other studies have produced conflicting results.

Saturday, July 19, 2014

Lost GH Found perspective

Well, I knew this time might come but it is still a little disappointing. We got a call from Coleman's endocrinologist a few weeks ago that the insurance company had denied three appeal letters for Coleman's Growth Hormones. He will not receive them anymore. We are thrilled that he got them when he did and for as long as he did. Thank you so much for all the questions and prayers. Cocos dr said there was/is a hypochondroplasia GH study in France and that 1/3 showed some progress. It was not definitive enough evidence to say it was a safe bet for insurances to give to them though. She said that this group that did the testing believes that some genes are more receptive that others and that's why 1/3 showed improvement. If you have any questions feel free to ask. I may not know the answer but I'll try.
I have to admit I am disappointed but not discouraged. I believe God has a specific life in mind for Coleman and myself. I also believe that this is Gods will because I'm totally at peace with this decision. If coco had not gotten the GH shots I might not have gotten to meet some of you and I might not have gotten to share Christ with you. Thanks again!

4 comments:

UnknownOctober 23, 2014 at 2:27 AM
Hi, thank you for sharing the info with us. I have personal interest in everything you write. Id be glad to communicate on email if that is okay with you. Thanks!
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UnknownOctober 23, 2014 at 2:30 AM
I am from israel, i have a hypochondroplast sun 2 y/o. I was told not to treat with growth hormone. I am still considering what is right..
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UnknownNovember 9, 2014 at 5:34 AM
Kristen - would you be willing to answer some questions about hypo? I believe my son is going to be diagnosed.
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Kristen CarterAugust 10, 2018 at 7:55 PM
Hello. I don’t know if you still have access to this blog or receive any notifications when people comment, but if you do could you find me on Instagram? My name there is awfulsweetness. I think my son may be diagnosed in utero and I have many many questions.
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