I was asked a question by someone today. Do I think telling everyone Coleman has hypochondroplasia is the best for his well being? I guess it caught me off guard because Im an open book. People seem to be more conciderate when they know why he is so small, or why he seems to look yopunger than his friends. Im not good at secrets or even omissions so I explaine to others. Is knowledge power? Is more information better. I don't know.
When Ashton was Coleman's age, I would explain to teachers, etc. Now, I leave it up to Ashton. She knows she's small (she prefers "small" to "short" for some reason), and I let her decide if it needs to be explained. If she doesn't explain it, I will offer an explanation if she isn't near. I don't want her to feel like her size is something that she needs to justify. However, hypochondroplasia isn't as prevalent as achondroplasia, and with me being a nurse, I'm all about educating people! :)
ReplyDeleteI do usally explain things when he is playing or out of ear shot. He is only four and is shy with new people so he has not taken a role of explaining yet. I will leave it up to him more as he gets older. Thanks for the advice. Im all ears when it comes to making things easier for him.
ReplyDeleteMy son's diagnosis of hypochondroplasia was confirmed today, so I've been doing a lot of research on it for the past couple of months. I just happened to come across your blog and this post today. My son is 21 months, so it's an early diagnosis, but I have felt the need to explain to people why he is so small and why his speech isn't as clear as other kids his age. I feel the need to let other people know, and as he gets older I will allow him to make those choices.
ReplyDeleteBy the way, your blog makes me feel so much better and more hopeful. I'm blessed to have healthy children. They are just packaged a little differently!
Erin Vasquez (Austin TX)
Wanted to let you know how much I've enjoyed your blog. It has been very helpful as my 5 yo was just diagnosed with hypochondroplasia. We have so much to learn. The genetecist suggested he do a trial of growth hormone so now we are going to see the endocrinologist to find out if he agrees. I'm sure that will be a battle with the insurance company if that is the path we take.
ReplyDeleteI have so many questions. I was wondering if there is a yahoo group or anyplace where people share/discuss this condition?
Thank you, Carolyn from Oregon
I did not find a group I liked or thought was easy to access and that is why I created this blog. If you have any questions about the GH process let me know. The insurance company will deny you and then hopefully the drug company will pick you up. You are one og the first people that the doctor sent them to get GH. Thats a good sign. Good luck and prayers to you.
ReplyDeleteHI,
ReplyDeleteThanks for responding. I do have a couple of questions for you. When you say the drug company might help us. Does that mean as a research kind of program or is it financially qualifying? Do you have any idea what the GH costs out of pocket?
It was actually the genetecist that dianosed Isaac that suggested a GH trial and wants us to go back to the endocrinologist. We talked to the endo 2 years ago and he didn't seem to think gh would help him. Thankfully he is only 5 so we have some time to sort this out.
Next question. Right now Isaac is on the average growth chart at 0-2%. The doc was vague on what we should expect. Do they anticipate our kiddos to cont up the chart where they are, fall below or will it be a big unknown? We are fine with whatever the outcome but are struggling with how much info to give him when the outcome seems a bit unknown.
Luckily Isaac's x-rays from when he was 3 didn't show any problems. He does have a bit of lordosis and other than being petite has been very healthy.
Thank you for your good wishes and prayers!
Carolyn
The doctors for whatever reason are very quick to say that GH's will not work for hypochondroplasia kids. I think it does not work for achondroplasia so they assume the same results. We have ssen Coleman grow 4 in this year as a result of GH and are on the growth chart for the first time since birth. My endo has complete confidence that GH will be a positive result for most hypo's but the inssurance company will deny you and your only option will be a study like we are in. GH's are so so expensive. Me and david, my hubby decided if they drug company wouldn't help us we would not consider it an option. 5,000 a month maybe. I cant remember what out of pocket was exactly. We have had no side effects from the shots, he does really well with them. feel free to ask anything.
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