Hypochondroplasia kid: February 2012

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, February 25, 2012

3ft. 3in

Coleman is 5 1/2 years old
Height is 99.5cm (3ft,3in)
Wingspan is 37.5 in
Leg Length's are 15 in and 15.5 in
growth total this year 2.5 in
Total growth is 7.5 in in two years since growth hormone shots

We went to Children's Specialty Hospital on Thursday to get his measurements and his blood work. We don't have the blood work in yet but he is doing great. our doctor said that she has had other Hypochondroplasia kids try to get the GH shots but all were denied. I know we are lucky to gt this opportunity and wish there was something we could do for others. Ill keep you posted.

Sunday, February 19, 2012

Shot or no shot?

So, I got a call from genetec, the growth hormone company that supplies Coleman's growth hormone and got a shock of a life time. They said they could no longer supply us with it because after reviewing his chart they discovered he had a diagnosis. The drug test they were doing was for individuals with growth hormone deficiencies only. I was in complete shock, why now after two years are you pulling the plug on something that's changed our lives. I tried to tell them it was working, we were seeing results, he is more proportional and his legs are growing. We have had no negative side effects at all. But they had their mind set and told me I could try to go through my insurance company (we all know how that goes). I even told them about you all. About my HypochondroplasiaKid blog followers. How if this works for CoCo it could work for your child.
To make a long story short after crying and being disappointed, the growth hormone ran out and I told Coleman we were having to stop the superman shots. He was confused and asked every night about it. I finally told God, if this was it, if we couldn't get them again then thank you for the opportunity. I told people and family to pray about it and I came to the decision this was Gods will, His decision. I was and have always been content with Coleman's size, diagnosis and all that entails. It was just disappointing to have something that makes life easier for my baby boy to be taken away.
Well our insurance company called us back two weeks later. They are sending us the growth hormone, they approved us. The genetec company called them and asked them to continue supplying us with it. We got our first shipment in today. Maybe we can change things for these kids. Give them a boost in life. Keep praying that we continue to see results in Coleman and that that leads to more opportunity for our kids to get them as protocol. I love you guys.