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st.augbride
member
CK (also called CPK) levels?
st.augbride
member
Ds has now tested with elevated CK twice, though only midly so (around 250-290). Anyone else? We're still waiting to hear back from our neuro.
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Re: CK (also called CPK) levels?
When my DS was 3 months old, he had an apnea spell. We ended up in the hospital for several days while every test possible was done to figure out why. His CK level was tested and came back at 22,000. We thought is was an error so we retested. That one came back at 17,000. We met with a neurologist and she ordered one more blood draw as well as some other tests to check for Glycogen Storage disorders. The CK level was at 13,000 this time and all the GSD tests were negative. At that point the neuro ordered a muscle biopsy. That's when we learned DS has Duchenne Muscular Dystrophy.
DS is now 21 months old. He doesn't show any signs or symptoms of the disease. The neurologist we see now specializes in treating this disease. He thinks DS is doing well and we don't have to go in for another appointment until December, 2012.
DS gets his checked constantly. 250 range means the muscles are inflammed slightly, probably achy and irritated. That's how he started off. He has had constant "waves" of CK highs and lows since he was a baby. His highest was Dec 2010, I'd have to go back to my chart, but I believe it was somewhere in the 140,000 range, it nearly killed him. He was in ICU on a respirator. He had been "diagnosed" with polymyositis as an infant, but I never thought it fit, and neither did some of the specialists.
After his last big episode, they decided to test him for CPT Type II (carnitine mitochondrial disorder). They finally sent his biopsies in for testing in late November, and the test results are due back anytime. I would be shocked if it wasn't positive.
OP, there are so many things that can cause elevated CK levels. I would start keeping track of any changes in behavior, illnesses (especially viral), exposure to heat, cold, urine output, mood, energy level, and any decline in strength or balance. You don't have to be keeping detailed charts or anything, but write down anything that seems off or different, the changes with CK elevations are subtle. I can spot an episode coming with ds, he gets cranky and sore, sometimes after getting a cold, and it's harder for him to do as much, and his stamina goes down.
I think this is a monitor and watch thing, and keep following up with your pedi. And have them monitor creatine levels as well. It is very common for chronic elevation of CK levels to cause kidney damage.