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help with rhabdomyolysis

Sent to Health Experts October 21 11:10 PM

Hi.I have a 7 year old daughter that was just diagnosed with mcardles disease aftern rhabdomyolysis for over a year. her ck levels are anywhere from 500-60000. they are still elevated and her liver enzymes elevate also along with myoglobin in her urine

this past week she was hospitalized with ck at 34800 and ckmb was 50.Everything i have read says that they go up with activities and exercise but she had no exertional activities as in gym or outside playing or any infections when this occured.she gets mild leg aches also in arms neck and stomach.
she went skating today and feels great with no pain.also she rides bicycles with no complaints .

she was genetic tested for mcardles disease who said she has gsd v.
is it common for ck levels to go up with no activity and no illness? and should i get a second opinion. just some of the facts i have read contradicts with her symptoms.

has anyone on here dealt with rhabdomyolysis and gsd v mcardles disease and what should we do

Edited by Customer (name blocked for privacy) on October 21 2006 at 11:19 PM

 

Optional Information:
Female , Age: 7

Customer (name blocked for privacy)
Status:  Closed   Value: $15
Answer
October 22 12:51 AM (1 hour and 41 minutes and 25 seconds later)
         
REPLIEDCheck Mark
Dear Lila,
I have a query,
Was your daughter hospitalised only on the basis of her lab reports or were their any specific symptoms too?
In the meantime here is an interesting article, that you may find useful,
http://www.mdausa.org/research/mcardle-tx.html
regards
Dr. Gupta

Reply
October 22 10:45 AM (9 hours and 54 minutes and 21 seconds later)
         
Reply to Gaurav Gupta's Post:

Thanks for replying....She was mainly hospitalized by her lab reports of her ck levels beinh high. they hospitalize her when her ck levels are over 10,000 and put her on iv fluids to flush her out so her kidneys receive no damage.her only symptoms are leg,arms,neck and stomach pain which is mild.nothing ever so bad she cries.

yesterday she went skating and had an all night sleep over where she played activities and has no complaints at all. she says she feels perfect. thats what bothers me is she feels no pain at time with exercise as they state in articles..

then there is times she can run jump and only have mild symptoms and be having rhabdomyolysis..i guess thats why i am so confused about the dna test



Edited by Customer (name blocked for privacy) on October 22 2006 at 4:43 PM
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October 23 9:01 AM (22 hours and 15 minutes and 48 seconds later)
         
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October 29 12:36 PM (6 days and 3 hours later)
         
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Edited by Customer (name blocked for privacy) on October 29 2006 at 7:17 PM
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