My son is going on ten years old. We have not chosen to use steriods, but worry about our decision. I would like to hear from others who have and hae not to see what they have to say.
We struggled over this question as well. Our son’s pediatrician said there was nothing else he could offer to help. He talked with Dr. Dubowitz in England who had been using it for some time for kids with Duchennes with good success. It really does seem to help them maintain their strength and ability to walk, etc. As soon as kids are taken off the predinsone they revert to where they would have been without it, but seem to have a better quality of life if you consider strength to do as they choose.
Dr. Dubowitz has kids take prednisone 10 days on, 10 days off. That was they limit many of the side effects of continuous steroids but still get benefit. We have added several general health suppliments and vitamins which help him as well. We have not seen anyone else in the states with this dosing schedule, but our son is doing very well. He is 19 and can still walk a little. He plays a saxophone in the college bands and is carrying a full load of class now in his second year of college. I doubt that would be the case with out the prednisone. I would be happy to talk to you more if you are interested. Each of us have to do what we feel is best for our sons. I was so troubled by our pediatrician’s insistance we start him on the Prednisone that I finally called and discussed it with his first neurologist we had met after he was diagnosed - and just before we moved. We felt we could trust her. She had been opposed to it on our first visit with her. Six months later when I called her she said she had done some studying on the subject and was planning to give it a try in her practice as well. That gave us much more peace of mind in starting him on it. We are very thankful we did.