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, Neel is 2 and was diagnosed 4 months ago. His initial CK level was 15,184 to be exact. Numbers I will never forget.
hello i don;t know to much about level but i know my son he just diagnosed last august his cpk is 7800,and the doctor say he is doing better he is far away for 20000
I remember at the time of diagnosis, our doctors telling us to not be overly concerned with the numbers. They could go down and up drastically in the course of a day.

--Samantha
My son's ck was 21,550 diagnosed when he was almost 7. what does this number really mean?
CK or Creatine Kinase, also called CPK, is an enzyme secreted by muscle when injured. This may happen during aggressive exercise or from injury. More active people will show higher levels of CK in a blood sample test. When a boy who has DMD is very young and active, levels will be high, yet fluctuate related to activity.

Elevated CK levels alone cannot be used to diagnose DMD, although it is an indicator of serious muscle injury and possible muscle disease. As each child is an individual and his level of activity may be different than another when a blood sample is taken one can expect to see variation in CK levels.

Brian Denger
Patrick was diagnosed when he was two in 2005. His CK level was > 33,000.
A high CK level can of course mean other things, but, when trying to diagnose a child for MD, I was also told that anything over 200 isn't in a normal range. Kelvin's was 22,000 when we first found out (age 5 1/2), then after starting supplements and after a few months, it went up nearly 10,000 + more (around 34,000). I have been told by 2 different clinics, that going up, when all other things are the same (same testing time, no exercise or being too tired prior to testing,etc.), isn't necessarily bad, and in fact can be better, as some children taking Losartan have actually seen their CK level increase because there could be an increase in muscle, meaning more muscle to release the CK. A high CK level, means that there is still a lot of good muscle left and typically it goes down a bit each year as muscle is destroyed. I was told to not assume that the higher is worse, it can be better. I hope I helped. I don't believe there is a "normal" level at all, as you can see that every child is very, very different in CK at different ages. Michelle
ours was 19,000
Hi! My oldest son's ck level was 12,089 and my youngest son's was 23,900. That was in March of 2005 and they were officially diagnosed in November of 2005. My oldest son's ck level was checked a couple of month's ago because he pulled a muscle and it was 8,000 something. But our md doctor said the ck level will fluctuate so they can't really use it.
Our son's CPK was 28k when diagnosed. Later after about a year on deflazacort, it dropped to 21k. I was very disappointed and asked the doctor why it wasn't lower. Dr. Wong pointed out that boys become more active b/c they are able to move easier and longer. Also, we had commuted the day before so that was alot of walking....
Char Burke
Our son's CPK was 28k when diagnosed. Later after about a year on deflazacort, it dropped to 21k. I was very disappointed and asked the doctor why wasn't lower. Dr. Wong pointed out that boys become more active b/c they are able to move easier and longer. Also, we had commuted the day before so that was alot of walking....
Char Burke
I forgot to mention that this test is very subjective - that is, that the procedure can vary lab by lab....Char

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