Episodic, elevated CK after illness - Mothering Forums

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Old 09-07-2012, 05:29 PM - Thread Starter
 
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We are trying to figure out whats going on with my son. He's 9, and has a history of leg/muscle problems after illness. Its very acute, and only happens about once each summer. He gets a summer cold/stuffy nose virus- with a sore throat, always a sore throat ( but only has had strep 2x and this has happened 6+) and a fever. Even a slightly elevated temp- last week only 100-  He seems better, then after a few days cannot stand one morning. Crying in pain. It hurts him behind his knees and at the calf muscle. ( He will sit on the couch, or crawl around, and say that only feels stiff) Last time his CK level was 1500 a few days after the episode. It came back down over the next few weeks.He walks awkwardly for weeks afterwards and is weak but then recovers fully. He has been rechecked in between and CK was good. Lots of other bloodwork done but everythings ok.

  He has had episodes of muscle fatigue/cramping/pain playing ball on hot days and hiking in warm weather, too, but is a pretty active kid otherwise.

  He now sees a neuro dr who is inclined to think it is a muscle enzyme disorder and has mentioned a muscle biopsy. She wants to be sure its indicated but says there are some muscle enzymes triggered by heat. She has recently rerun bloodwork and we are waiting for results. Last week he had strep, felt better, had leg stiffness, but it never developed into anything more :) She ran his blood on the "stiff" day and ck was normal.

  This does not happen in the winter. He can get the same upper respiratory stuff and he's fine.

  I am so worried for my boy. Thanks for your time.

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Old 09-23-2012, 12:35 PM
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Seems Dr. Sears missed your post. I'll bump it up for his attention. :)


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Old 09-24-2012, 05:57 AM - Thread Starter
 
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Thank you!

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Old 10-12-2012, 07:56 PM - Thread Starter
 
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Thank you- I hope he sees it!

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Old 01-16-2013, 11:22 PM
 
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This is too complex for me to comment on.  I don't have any particular expertise in CK issues. 

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Old 08-16-2013, 11:18 AM
 
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Hi kanga2roo, I have just come across your post while trying to do some more research on mh 6 yo sons recent condition.
My son has been ill for approx 4 days with a cough, runny nose, loss of appetite , fatigue and then all of a sudden complained of very sore legs and that he couldn't walk . He started hobbling on a Wednesday night, by thurs am he couldn't walk. I took him for ablood test and when we got home as I was taking his shoes and socks off I noticed his feet up to his calves (which is where he says is painful) were icy cold to the touch- v much like your son. I was immediately concerned about circulation and a possible clot so took him back to the doctors. She said she wasn't too concerned as his pulses were fine but to give him a stronger pain killer and see if all Ok. Anyway, I ended up taking him to the ED to get some answers and here I got the results of his blood test. His CK levels were at 1563 - I googled this and started getting concerned . I came across your post after we had been discharged from hospital with a "viral myocitis" diagnosis... I'm just wondering if you have had any luck finding out any more information with respect to your son as my sons symptoms, although not recurring , are v similar to your sons. ?
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