The doctor is going off of some basic blood tests that indicate to him that he falls within the normal range for GH. He also feels that Nicholas's short stature is due entirely to the steroids - not "real" growth hormone deficiency, and he would not be short if it were not for the steroid use over the years. He is on the verge of authorizing the stim test, but he says the results will not make a difference, even if he has low GH, it is because of the steroids. He's big on the "side effects", and not having any protocol for prescribing GH to DMD patients. Since I'm fighting them to get a wheelchair right now too, it is hard to also carry this battle on - I'm asking for too much at once. He is 12 and has trouble walking now, so he is obviously going to need the wheelchair - doesn't matter how short/tall he is!!! It seems like in my case, my insurance company has a lot of ways around covering Nicholas's needs. If I had known 12 years ago I would need such extensive care, I obviously would not have stayed with Kaiser - but isn't that what INSURANCE is for...the unexpected?
Nicholas has had a scooter since August (we had to pay for it - we used the MDA $ for his new AFO's this year). He is having a hard time getting on and off it and he isn't seated properly (according to PT in Cincinnati), but it really is a lifesaver! He uses it at schoool - if not for that he would be struggling for certain. We had been pushing him around in the manual chair for at least the last three years, but in Jr. High it's hard to ask other students to take on that responsibility along with their own books and things (not that his friends wouldn't have kept doing this-they have been so great with him). The independece it has given him is wonderful for his self-esteem. It's amazing how fast he has started weakening though. Just within the last couple weeks he has been having trouble getting up off of the couch without help. He still has the strength to walk really short distances, but I help him with everything - getting up from bed, dressing him, bathroom, etc. He can feed himself and his hands and arms are very strong though - that's a good thing! Thanks Lori,
Thanks Lori! That is definitely a good idea for Nicholas now, too - I will have to look into that!
An additional benefit from growth hormone is it took away the cushionoid symptoms such as the puffy face which really bothered my son who is 17. Prior to GH (and the testoserone cream) he looked like an 11yo. Good Luck, Cheri
I have just joined the forum and have been reading the threads about GH and steroids. We are in the UK and have a problem in that the steroids are affecting our son's growth. He is 7yrs 6mths and measure 111cm and weighs 23kg. We have an appointment with the Consultant in early Feb so I am trying to get as much information together as possible. You mention the stim test - I presume this is to check the GH levels. Should I be asking for this to be carried out? Also, how do they distinguish between the effects of the steroids and GH deficiency? From reading above, it appears that if growth is suppressed due to steroids then GH may not be prescribed, but if GH levels are low and they are on steroids then they are likely to be prescribed. I had concerns about my son's growth prior to starting the steroids but this angle got lost in all the turmoil if being diagnosed with DMD. I would appreciate any information you can give me so that I can discuss all angles with the Consultant. Have any of you who have been affected by steroids in this way had to reduce or even stop the steroids? If so, what happened?