Most of the companies that make growth hormones have their own bridge program. They will supply you with the product free of charge while working on the approval from your insurance company. I would assume approval is harder to get if you son is not growth hormone deficient. Is your son on any state programs? Medicaid picks up the amount that my insurance company doesn't cover.
irishgirl said:There has been a lot of press lately on growth hormones - a lot of negative press. I would check and double check all side effects of offering growth hormones to DMD children. Our doctor at CNMC in DC feels that growth hormones should NEVER be given to DMD children. I'm very curious to know your reasoning behind wanting to do this. I find, quite often, that parents know far more than the doctors in the DMD world.
My son Carter started on GH prior to his DMD diagnosis for SGA (small for gestational age). He qualified for GH treatment based on his birth size and lack of growth by age 2 and we started him on treatment before doing the growth hormone stimulation test (that shows if there's a deficiency or not). Once we started seeing Dr. Wong she said that she would feel more comfortable knowing if he was indeed deficient or not, so we took him off treatment for a few months and did the stim test last summer. It turned out that Carter does have growth hormone deficiency, so he was started back on GH immediately. The way it was explained to us by both Dr. Wong and our local Endocrinologist (who just came from Cincinnati Childrens about 2 years ago and worked with Dr. Wong and her team) is that GHT is a little controversial right now with DMD boys. Some Dr.s think it's a possible future treatment and are optomistic about the way it appears to build muscle; but others worry about any effects it might have on their hearts and bring up the point that being short can be of benefit for these boys, less body to move around and less work for their hearts. But that since he's deficient, he needs to be on GH treatment, DMD or not. GH isn't just for height but for the overall development of the body and organs; it's something that all of our bodies NEED. They both told us though that if he wasn't deficient it would be something we needed to think about more and decide what route we wanted to go. At that time it would be a question of quality of life and if the severe short stature would have a negative impact on him. Prior to DMD entering our lives, the pros of GH for SGA outweighed the possible risks that could be associated; but I'm not sure what we would have done if his test came back that he was making adequate GH. We may have taken a break from treatment for awhile until we reached a point where his height became a big deal for him, but I'm not 100% sure. In a way it was nice to find out he was indeed deficient so that the decision was made for us.
I hope all this makes sense.. Did CNMC say why they feel DMD boys should never be given GH? Is it because the effects on DMD boys are still not completely known?