PLEASE help.  I will try to make this short.  My son is 14 months old had has been developmentally delayed since he was about 9 months old(when we first noticed something was not "quite right").  HE does not crawl, walk, talk, babble ect.  Long story short.  We finally make to to a neurologist and they did a CPK and a chormosome microarray.  We are still waiting for the microarray to come back but the CPK came back at 21,580.  The dr called and set up an immediate appt. with a neuromuscular specialist.  We saw her yesterday and she basically told us to pray/hope for a lab error.  She ordered another test(CPK) along with a DNA.  This new CPK came back at 26,970.  I am a wreck and don't know what to think.  She spoke briefly about DMD and BMD but said she did not want to dive too deeply until this new CPK came back.  Please give me advise/guidance.  What are the average levels when initially diagnosed?  I know I am rambling but I am a mess.  Thank you!

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Hi Brooke, I'd say take a deep breath and wait for the results to come back. There are other things that CAN cause a high cpk. Stay calm until you know the facts. Your little boy needs you to be ok.

Take care.

Hello Lisa, thank you for the reply.  Waiting/anticipation are the worst.  What are the average CK levels in DMD?

typo, CK not CPK

Hi Brooke,

I'm sorry to read of your ordeal and the angst you are feeling.  Waiting for information in itself is agonizing.  There is no 'average CPK' at diagnosis as this muscle enzyme test can be influenced by many factors including injury and exercise.  Typically boys are diagnosed older than your son's age.  Additionally, a higher CPK reading does not necessarily mean more advanced DMD.  Again, there are many influencing factors and the same child can have different values at various times.

I agree with Lisa's suggestion (As hard as it is to follow...most of us have been in your shoes.), but waiting until you have the results is the best course to take right now.  Should it turn out your son is diagnosed with DMD please look to this community for advice and support.  

Brian

Hi Brooke,

CPK and CK are used interchangeably. CPK is the older term (creatine phosokinase), and now just creatine kinase.

Our boys values can vary widely, it doesn't really matter, just that it's very high. There are CK isoenzymes, which means subtypes that also come from the brain and heart too. Usually the doctors don't even continue to check it once the child has been diagnosed. As a carrier, mine have been as high as 10,000 and as low as 300, with absolutely no difference in how I felt or was functioning. At diagnosis, my son's was 24,000, and the repeat to make sure it was not just a lab error was 21,000. Please wait for the DNA analysis before making any conclusions, as Lisa and Brian have stated earlier. And we all know how agonizing a wait this can be. Hang in there.

Andrea

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