Thank you so much for taking the time to reply. Well just to give you an update of whats going on. I was finally able to get an appointment with a neurologist for this Wednesday. The new doctor that checked my son says he also thinks it may be DMD but he cannot diagnose him cause he is not a specialist but atleast he was able to get me a sooner appointment with the correct doctor. As for me investigating, Iv'e been on so many websites relating to DMD and I was shocked and amazed at the same time. I seen a video of some children with DMD running and getting up from the ground and it was like looking at my son. At least if they were to diagnose him I can atleast take him to the appropriate people so he can get started on the medication he will need. As for me Iv'e already set it in my mind that it is DMD cause everything I have read and seen leads to it, not only that I can feel it in my heart. Its kind of hard cause everyone in our family expects me to be the strongest cause I'm the mother and I'm the one who takes him to the doctor and is with him most of the time but it takes a toll on me at times.
In your experience does this ever get easier? I don't know if your son is in a wheel chair yet if so how did you deal with watching your son stop walking cause at this moment I can't imagine it. One huge question I do have for you, how do you go about telling your son he has DMD. My son is 6 now and I don't think he would understand. Could you please share with me how you did it?
Thank you so much for your advise about taking a vacation, I think I could really use one. I'm making sure to have all the fun with him and I guess all I can do now is put it in gods hands.
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Originally Posted by imurphy
My son has DMD, one of the wide variety of muscular dystrophies. Elevated CK is an indication of a problem affecting the cell walls. The CK enzyme literally leaks out though the cell wall due to damage. Its not the problem - just an indicator of other problems so it may be MD but it may be something else.
I understand your worries and the initial stage until you know whats happening is probably the worst. I know its probably impossible to do but worrying about it isn't going to change much. Go on holiday and enjoy the summer - between going to the beach and spending his time visiting doctors I'm pretty sure which your son will pick.
The temptation to investigate is irresistable so: Look at clinical symptoms - what does he do, how does he walk, etc and compare that with the symptoms of know types of MD. There are lots of diseases out there which share symptoms so it may be another thing. If it is MD check out 'gowers movement', its a simple indication... and then go to the beach - you can't do anything else.
Ian
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