We are in the process of getting Cole approved for treatment. He has been prescribed Genotropin (1.3 mg/daily) by Dr. Rutter. He's 9 years old. I'm just curious and would like to know if anyone has seen any negative side affects. I'm thrilled to read all the positive ones....but I still worry. I'd also be interested to know what form of HGH others are on (Genotropin/ Norditropin/Humatrope?) and what influenced the physician to prescribe one over another.
I have Kaiser insurance and my son is 12 years old. He has been taking steroids for four years and has dropped into the 3rd percentile in height (he is barely 4ft tall and weighs 98 lbs - he has grown only one inch in the last three years). I have been reading all the positive info from other parents regarding GH and I have also been to see Dr. Wong. I approached my endo at Kaiser strongly encouraging him to put Nicholas on GH, but he had a laundry-list of reasons not to. I have spent hours gathering info to support GH, not to mention he has spoken to Dr. Rutter and Dr. Wong and done research on his own. At this point he still not convinced that it is appropriate and is a "NO", but I am really pushing him to at least do the stim test. It seems like he is going to give a little on that and perhaps authorize the test - but he feels that the shortness is because of the steroids and therefore using GH would be a misuse of the intention of the drug and not appropriate. The doctor is doing what they used to do with steroids - trying to make it seem like the side-effects are not worth the benefits (which I understand the side-effects are not too many, and definitely nothing compared to the side-effects of the steroids). It seems like it depends on what insurance company you have and also having a supportive doctor with experience in DMD and growth hormone would probably help too. Mine admits that he has no experience with this, nor do the other endo's that he has consulted. All I can contribute to this discussion is that I am having a horrible time and I really want GH!. But I can't even get Kaiser to cover the wheelchair that my son needs, so I don't have much faith in ever getting the GH from them. I'm spending all my time fighting with my insurance right now - I hope you don't have Kaiser!!! (Although I'm sure others out there may have had very positive experiences with them and are quite happy with their care!). I'll see you in DC in Feb. if you are going. Good luck with the GH.
So, his Growth Hormone levels were within normal limits and she still prescribed GH injections for him? Is there any chance this drug could have an adverse effect on your son since his levels are normal? Is she doing a Growth Hormone study on a population of Duchenne boys with low GH levels and on ones with normal results GH while testing both groups' strength and monitoring bloodwork during this study? If so, is she close to publishing her results?
Can anyone please give me Dr. Wong's email adress ? Have been reading this thread and find it very interesting for our boy, 9 years old. Hasn't grown much the last three years, and we also have a weight issue (steroids?)