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CK levels increasing

I remember reading something before on the message board about some children who have been in clinical trials having their CK level increase and that it may not be a "bad" thing since it shows that the child actually has a lot of muscle left at the time (although it means that a lot is going on). Most kids on here seem to have their CK level decrease, especially with Protandim usage, or just because it does decrease with progression. I was just wondering how many kids out there are having their CK levels increase. Kelvin's CK level keeps going up and nothing has changed with his activity, etc. He will be 6 in September. I was wondering at what age the CK level typically reaches its highest level prior to continually decreasing. Kelvin's was 22,000 in December, 24,000 in January and now approx. 34,000 in May (this last one taken at a different hospital, but very early in the morning - he did swim the night before, but had no activity in the morning). I will post this on the "new" site as well if it doesn't show up there too. I haven't figured that out yet. This may all have been covered before, but I can't recall many talking about it going up, mostly going down. I am just curious as to who else may be experiencing the same situation. Thanks, Michelle

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Permalink Reply by MicahsDaddy on June 18, 2008 at 10:56am

the kids tend to get stronger as they get older....just like typical kids....hence the reason they fall less at 6 than they did at 3. unfortunately, our kids plateau around 6 and then we wait for the inevitable decline in strength.

that all said, i would think that the ck level will increase from 3 to 6 years of age, either increase or maintain the same level during the plateau years depending on the childs activity, then, of course, decrease sometime after the decline stages, especially when their activity decreases.

makes sense to me, but then again, i am reminded everyday that what i think makes sense in this DMD world is usually not the correct interpretation.

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Permalink Reply by Kelvinsmom - Michelle on June 18, 2008 at 5:25pm

I would think that the level would increase until age 6 as well, but if after a lot of review of previous posts, asking questions, etc., most start dropping much before age 6, in many cases, from age 3 and on, so, while others in Kelvin's age group are decreasing in CK and some have been for years, his is continually increasing. What you said makes since though, when they have the growth that helps them for a bit (the Cinderella period). Kelvin hasn't grown much in nearly 3 years though. Of course, now I'll never know for sure of his next CK level, as we started Deflazacort last weekend and it could change everything for awhile. He is on fire, like someone gave him a happy pill. He thinks he can run like crazy now. He feels so good he doesn't know what to do with himself. I hope the happiness feeling continues as he has had some major temper issues, which have been great for a few days. I will continue to wait until I see what others say about what age their child reached the highest CK value.