I don't even no where to start.....
My 4 year old son Tanner recently had a blood draw to check his CPK levels...his came back at 8000.
He has always struggled with low muscle tone and was a very late walker. He is also behind in his speech...though in the past 9 months it has really exploded. He has never been able to run or climb stairs and does the Gowers movement to get up from the floor. He also shows some autistic like behaviors that his Dad and I have noticed.
The Dr. that we were referred to commented on his larger then normal calves for a 4 year old. (Though we had never noticed it...we just figured it was how he was built.) He also of course asked about any family history...we have no history of MD. He also asked about Tanners older sisters. Our oldest had low muscle tone issues as a toddler and still has some mild issues, and our middle child has weak muscles in her fingers and hands that she recieves OT for in school.
His Dr. requested another blood draw, and we go back to see him on the 12th of May. I am fairly certain that Tanner has some form of MD because when I called the Dr. office to verify his appointment I was told that that is the day the Dr. sees all of his MD patients. The Dr. also told us that he wants to do a muscle biopsy and a DNA study.
I have been doing tons of reading on the internet in the last week since his latest appt. and am just as confused as ever. I hate the not knowing!
Is it common to have such a high reading for Beckers...or do you think it points to Duchenne? Or even somthing else? I understand that you guys may not know for sure either, but you at least know so much more about this disease than I do.
I also read that if the child was very upset during the blood draw that it can skew the results.?.? They had a very difficult time drawing blood from him the first time and he was quite upset and was really crying hard. They even had to stop and let him calm down and then finally were able to get the blood drawn.
I am sorry this is so long and disjointed. I haven't been getting much sleep and the little I have gotten was pretty restless. Thanks for any elightment you can share...or any advice!