Hi guys, I was just wondering what level of CK your child/children had when they were diagnosed with DMD, my nephew's was at 20,000 and he was diagnosed nearly a year ago. Im just wondering if this is really high or is it a normal level for DMD children??

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My son's was 14,000 at diagnosis (3 1/2 years). His most recent level was 11, 211 in June.
Char is right - CK tests are very subjective. I used to put too much stock in CK in determining what was going on with our son. I ended up sending the same blood sample to two different labs because I was getting so frustrated determining trends, and the two labs were drastically different - ie: doubled at one over the other.

Also - the levels can vary drastically due to activity level before the test. Ours are always pretty low when we go to Cincinnati, (relatively), and I finally determined that it's probably because we're sitting on the plane all day the day before - not because he's doing "better" per say.

Just ignore CK results - higher doesn't mean he's worse. It may mean he has more muscle tissue. CK levels are useless after the intial diagnosis.
I know this is an old post but thought I would see if I got a response. For the ones who's sons were diagnosed around 5 years if age , what were initial symptoms? My son 5 has had 3 Cpk test 8000, 5000, and 3000. The 3000 one was done at Cincinnati Children's. Dr. Wong believes he has BMD because of his clinical presentation and lower Cpk. We go in march for a muscle biopsy, he really doesn't have any noticeable symptoms. He just runs slower then peers.
I agree. cK levels can vary and hard to understand why they seem to be all over the place. When Preston was diagnosed 3 years ago he was found to have levels over 61,000. Now he's downtown the 19,000's. His doctors check it every once in awhile as part of keeping an eye on his kidneys.

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