I took my child to the doctor because he was having muscle weakness and just can't keep up with other children. The doctor ran tests and now they think it may be Muscle Dystrophy. The doctor had told me his test were elevated but I was Shocked when I seen the numbers. His CK total was at 18820 U/L when normal should be 30-345 U/L. His Alkaline Phosphatase was at 120 U/L, normal is 47-114 U/L. His ALT was 905 U/L, normal is 14-66 U/L and his AST was 698 U/L, normal is 16-48 U/L. Has anyone else had test results so elavated and if so waht kind of complications can it cause. The Neurologist won't be able to see him till 2 months and in the mean time I'm going crazy not knowing exactly what it is. Can anyone give me some kind of information.

I just added some MD info sites into our useful Sticky thread - http://neurotalk.psychcentral.compost337342-4.html

I hope those will help you a bit until more replies are made.

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

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.

i also have muscular dystrophy a more comon type known as facialscapularhumeral distrophy it mainly effects the face arms and legs i have had no difficulty with it what you will need to do however is get relatives tested such as aunts uncles cousins and siblings also yourself. i have the genectics for it and i may be passed over by the crippling effects. i like your son have alwase had trouble keeping up with classmates in physical activity. i have other diffaculties and they dont seem to effect me eather. lets see total i have fshd which i just talked about adhd scoliosis nf (neurofibermatosis) and the posibility of Syringomyelia. if your son has adhd there may be some hope adhd atention deficit hyperactivity disorder if he has it it may somewut compensete for the difficulties he is having.

Hi there! Someone may have already answered your question but I thought I would add my own two bits. I am 36 years old and I have DMD myself. Incidentally, I also have a wife, a job, and my own condominium.

When I was a young child like your son, I was well aware of the fact that I was somehow different than the other children. My mom hadn't told why I was different and this made me depressed. I thought to myself that my mom would have told me if there was something wrong with me so the only thing it could mean was that I wasn't trying hard enough or that I wasn't eating enough spinach (because that is what made Popeye strong).

I suspect that telling your son would actually be a relief to him. I'm not saying that you need to tell him that he probably won't live quite as long as other people (that can wait a few years) but you should give a name to it at least, that way he will know that he isn't doing anything wrong. I would tell him that he has muscular dystrophy, which means that his muscles didn’t come with the right instructions on how to stay strong.

You may feel an urge to try and make him stay happy all the time and fill his life with as many extraordinary experiences as possible (and that would be understandable), but you really don't have to. When I was a child I desperately wanted to be treated like all the other kids, no better no worse. I wanted to be disciplined when I did something wrong and rewarded when I did a good job at something. And I think I turned out well enough as a result!

On the flip side, I have seen what happens when people like me are kept in a bubble. They get passed through school by being guided down the easy route, and they are never given the gifts of responsibility and expectation. As a result, they didn't attend college or university, never have had a job, and haven't been in a romantic relationship.

Having a child with DMD never gets easier or harder, it just evolves as you both adapt to the changes and experiences that you will inevitably encounter. Things only become scary if you let them be that way. However, if you see them as challenges and opportunities along a fascinating and fulfilling journey, then that is also what life with DMD can be.

So when your child can no longer walk one day (which will happen regardless of whether he uses steroid medications or not), you can choose to see it as an opportunity rather than a tragedy. I know that I did. All of a sudden I could 'walk' to school with my friends, play outside at recess, go to the store by myself, and even play sports! Rather than confining me, my power wheelchair liberated me. It was one of the many highlights of my life so far.