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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Jack was about 22,000 at 2 1/2 years old. He was tested recently and was at 21,000 at 8 years old.

Ang :)
My son's level was above 32,000 when he was diagnosed 3½ years ago. All subsequent levels have been right around that. One was over 40,000.
So I guess that once they have a very high CK Level it doesn't matter the number, just the fact it is so high is enough to know something is wrong. I really just wanted to confirm with you guys that 20,000 was high enough to be DMD. God forgive me but sometimes I don't know if the doctors are right or wrong. With living in Ireland they don't see DMD much so I am a bit sceptic with everything they tell us and come on here to confirm if they are right or not. You guys are like our second opinion!! thanks for your very quick responses. :-)
Thanks Roxanne you have just given me that extra bit of confirmation that I needed.
I have no idea what my CK levels were when I was first diagnosed.
I think it is something I will ask my doctors when I go for my next appointment.
I have two boys with this God awful desease, Matts were at 24,000 and Malaky's were 32000
If I remember right, Justins was around 24,000 at over 5yrs old.

My son's was 16,800 when he was diagnosed at 5. I have seen it as high as 40,000 and as low as 5000. It will go up if your son is more physically active before the draw. I have been told by physicians that anything over 200 is considered abnormal.
James was diagnosed at 2 and his levels were 8000. These days he usually returns around 20,000. I too was told anything over 200 was abnormal.
Hi,my son was diagnesed at 7yrs old his cpk was aroud 7800u/l ,after two months it was around 8400u/l,that's true any level above 204u/l is anormal
Kyle's was 4487 when initially diagnosed and I believe was low 6000s at final confirmation at the University of Iowa Children's Hospital.
My son Avery's was 32,000 just prior to diagnosis at age 2 1/2. He just had his levels checked now that he's been on Deflazacort for 3 months and it was just above 14,000 this time. We are attributing it to the fact that he is also on synthroid and the combination of both meds may have lowered it.

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