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muscular dystrophy?

post #1 of 5
Thread Starter 

Just wondering if anyone that has kiddos with this can give me some more insight. What were your kids' CK levels when they were diagnosed or a diagnosis was suspected? We have run the CPK twice now. The first time it was slightly elevated but not enough to worry too much about but this last time its even higher. I have yet to hear back from dr. yet as there were some other tests run at the same time and I'm assuming they're waiting for all the tests to come in to contact me. Just wondering if someone can give me some insight. I know the normal levels according to my dr. are 30-150 u/l . My dd is 2 1/2. Any help would be greatly appreciated! Thanks :)

post #2 of 5
Thread Starter 

Just bumping this in case anyone that may be able to help or have ideas missed it.

post #3 of 5

My son's ck levels were in the 12,000 range.  His liver enzymes were very high in the 400-500 range as well.  He was diagnosed with Duchenne Muscular Dystrophy at 2 1/2 yrs old.  His doctor recommended a chewable enzyme supplement with every meal, a liver detox supplement, vitamin E, selenium, l-carnitine, coq10, and an arthritis supplement among other things.  It seems to be helping, and I am curious to know what his levels are now.  Hopefully we will be getting them checked soon.

post #4 of 5

Hi,

I know this is an older thread, but I have a 19 yr old with DMD.

Anytime you need info or to bounce an idea, I can help,

 

Jacqui
 

post #5 of 5

Hi. My son was diagnosed at age 7 with ck level of 21,000. At 11 he's struggling to be a "regular" kid. He takes CoQ10, Vitamin E, Calcium and Omega 3 ... and a lot of heating pads, stretching, massage, aqua therapy, yoga is next

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