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Elevated CK level in my son but he did have a fever a few days before that
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An_245261 posted:
Hello,

My son is 6 1/2 he had been complaining of calf pain a few days in the last few weeks. When he did complain it was always in the morning and it was just his calves. He had a fever around 7-10 days ago that lasted a couple of days. His pediatrician wanted him to be tested for MD, but from looking online I don't see that he exhibits many of the symptoms. Other than occasional pain in his calves in the morning, he is very active and can do jumping jacks and push ups and swims almost everyday. I am worried about possible MD, but could it have just been the fever. His CK level was 387, I want to have him tested again to see if it went down. He has not complained of any pain the last few days and has been very active. The pediatrician wants to wait for the orthopedic surgeon to see him to have them do lab work.

Thanks for any input,
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Tanya7321 responded:
Hi,
What dis you find out??? Is your son okay??
My son is 7 and the same thing happened. He was sick for a few days and started complaining about leg pain in his calves on Tues. by Wed. he could not walk. We took him to ER and they said he had elevated CK levels and transferred him by ambulance to a Children's Hospital. He is clearly sick with a virus which they confirmed. But I also am worried about possible MD. About 6 months ago he would sit down in the middle of the store saying he was to tired to walk. This happened a lot but I took him to DR. and he said he's just growing. Once we moved to Oahu he never complained until now. The Dr.'s in the hospital said they think it was the virus but his Pediatrician wants to maybe do some genetic testing. I am writing this crying my eyes out! I have never heard of MD in my family but I am so scared.
 
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Roy Benaroch, MD responded:
We're talking here about a muscle enzyme called creatine phosphokinase, sometimes called creatine kinase. It's abbreviated CK or CPK.
In pediatrics by far the most common cause of elevated CPK is a viral infection that causes muscle inflammation. Influenza is the classic-- a few days or a week after an illness with fever in the winter, a child develops increasing muscle pain, mostly in the calves. Other viruses can cause this too. The CPK rarely increases to any kind of level that is harmful, and other than pain control no treatment is needed. With a classic story, I don't usually even repeat the labs later. The child gets better and is free of pain and running around-- no more labs are needed.

MD is a chronic disease of muscle. The most common forms include symptoms starting in early childhood, tho sometimes the disease can be more mild. Elevated muscle enzymes like CPK are found, usually very high, in the thousands. In addition, there is chronic, progressive weakness and large-feeling muscles.

Certainly if parents are worried, repeating the CPK lab a few weeks after the fever can confirm that the level is returning towards normal.
 
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jolivo32 replied to Tanya7321's response:
Hello Tanya,

Sorry for the late response, I have not been checking this because everything was fine. We took him to a children's hospital where he saw an orthopedic surgeon. They didn't even do a blood test just had him do some exercises. My son has not complained of calf pain in some time, but he did complain about it more than once over a period of about six months to a year. The doctor just said that his calcium was low and that he also need to be taking some vitamins, like Flintstones. I was very worried, but he is so active that I just didn't see how he could have MD and he is already getting close to being 7. I hope your son is okay, my son would act the way your son does, sometimes he just wouldn't want to walk. I think by 6 or 7 if a kid is fairly active, that MD is no longer a possibility as far as the ones that strike in childhood.
 
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jolivo32 replied to Roy Benaroch, MD's response:
Thank you for the reply doctor, everything is fine with my son, seems to have just been a temporary issue probably caused by him having the flu.
 
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stacykline1978 replied to Roy Benaroch, MD's response:
What is this happens everytime the child get a fever? My daughter has had this 4 times in the last three years and we have seen all types of specialist and got alot of things a little off but nothing concrete.
 
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Wrightunder replied to stacykline1978's response:
My son has experienced this 3 times in the last 18 months, sore calves resulting in inability to stand walk for a week or so, elevated CK in 1,000's on two occassions (not the latest attack) and then returns to normal. Interestingly, walks on tip toe toward the end of recovery. Our son is otherwise a normal active 7 year old, however does tend to get more tired than normal after activity occassionally. We are currently seeing a Neuromuscular specialist and our son is scheduled for a muscle biopsy in the coming weeks in an attempt to identify cause.
 
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Concerned67 replied to Roy Benaroch, MD's response:
I am 45 yo and got a fever and cold Thanksgiving weekend. Two weeks later I had pain in my forearms. Now it's been four weeks since the pain started and I have someone else type for me b/c it is so painful. They just did a CPK test a week ago and my CPK level is over 1300. I cannot lead a normal life with this pain. It's painful to brush my teeth. My doctor has me on Prednisone 20 mg twice a day but it's not doing anything. Any suggestions Dietary or otherwise?
Thank you.
 
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marinemom1776 replied to Roy Benaroch, MD's response:
I was searching the web and found this. My son's medical records indicate his creatine kinase level was 1128, aspartate aminotransferase was 54, and potassium was 5.52, and lactate dehydrogenase was 199 (low) when he was in boot camp. I noticed the doctor ordered a follow up blood test to be done two days later, but that never occured apparently. His chart is very thorough, so I imagine it would be there. I would ask him, but he is deployed I probably will not talk to him for a while. I am really concerned about this. It was done three years ago, but he has mentioned chronic leg pain. He was sent for physical therapy for his achilles tendons during his military occupational training (he could barely walk). The doctor said it was inflammation due to all the running they do (Marines do run a lot). Should I be concerned enough to force him (if possible) to get another lab done? Thanks so much.
 
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Sophie36912 replied to Wrightunder's response:
This has also happened to my son. On 4 occassions (between the ages of 5 and he woke up in the morning unable to walk but able to get around on his knees. Like your son at the end of recovery he would walk on tip toe. Only on the last attack was a blood test done which revealed a CK of over 4000. There were worries of MD but a further blood test was repeated two weeks later and fortunately the CK had gone back to normal. We then saw numerous doctors and had a number of tests but never got an answer to the problem. A potassium deficiency was suggeste;, the last doctor we saw favoured the viral theory. The muscle biopsy was suggested if he had another attack as otherwise he is fit and healthy. He has not had an attack for 2 years but the last couple of weeks he has complained of leg aches, tiredness and headaches. The doctors did another blood test but CK was ok however I am still concerned. I hope your son is ok, and just wondered if the muscle biopsy revealed anything or if you have gained any more information on this condition? Many thanks.
 
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VAvinaC replied to Roy Benaroch, MD's response:
Thank you for the information. My son has experience this for the last 5 years or so. What I would like to know is why was this condition never experienced before and what can we (as parents) do to prevent or resolve the problem? I would hate to tell my kid to expect to get this muscle plains every time he is sick with the flu or any viral infection.


I feel frustrated because we have been referred to different specialists but no one performs further testing or provides any answer to the problem. I'm very concern as the pain that he experiences is so bad that he is not able to walk.

What are your suggestions?
 
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Roy Benaroch, MD replied to VAvinaC's response:
CPK elevation in children is not common-- I have only occasionally seen it. In my experience there is usually a clear, recent explanation, and therefore no further eval is needed. I suppose if it were recurrent, further eval might be a good idea. I did find this report that I think is reassuring:

http://www.ncbi.nlm.nih.gov/pubmed/21592501

It's a case series of 130 children seen at one center in Canada with CPK elevations. In all but one case, the cause was transient and benign, even if it recurred. In a significant number of children, 13%, no cause of the CPK elevation was ever found. Only one of the 130 children had a metabolic muscle disorder.
 
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Windywah responded:
Hi Everyone,

Firstly I would like to say I gained a huge amount of comfort from reading this page, a few months ago during an extremely scary time.

My 6 year old son had a mild case of flu, followed by pain in his calves that rapidly worsened preventing him from walking. His CK level was 3000 and rose to just over 4000 even after he began to improve. The doctors, seemed unsure of a diagnosis and helpless, prescribing just paracetamol.

We were instructed to drink loads of fluids, to flush out the nasties. and after 5 blood tests his levels were again normal.
He couldn't walk at all for 3-4 days.

Similar story to you guys so far. We have since settled on the self-diagnosis that this condition is "Benign Acute Childhood Myositis". A small study done in india, confirmed a strong viral link. but thankfully no lasting effects.

Now for the good bit. A few days ago, my son had a day of school with a slight temperature and headache. Next day, his legs began hurting and he was having trouble walking again.

Being an avid natural health enthusiast, I began to google recommended natural remedies for myositis in general. To my sons delight, the substance that comes out on top is Ginger.

I told my son, that he needed to take this special medicine, and opened a bag of gingerbread men, ginger nut biscuits and dark ginger cake. Without any exaggeration, the results were staggering, within 20 minutes he was running around.

This could well be a placebo effect, pain is a very subjective thing, but the discomfort had stopped. When his legs began to hurt again the next day (if they did) he went for his special medicine and was right as rain. Today he's fine.

We all know it works for morning sickness, why not myositis.

Hope this helps some other folk, would love to hear if it did.

Thanks again to all you guys for sharing, it really helped us make sense of a difficult time. xx
 
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amy0079 replied to Wrightunder's response:
Also wondering what the muscle biopsy revealed? My 3.5 year old had a virus recently and ended up hospitalized because of elevated CK (5000). That was about a month ago. This week he got a stomach virus and now he is complaining of the same pain in his legs that occurred previously. I am concerned, but trying not to think the worst!
 
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natlynj replied to Roy Benaroch, MD's response:
My son is 17 and last march he had rhabdomyolysis and stayed in the hositpal for two weeks with ck levels over 16,000. They asure me that he would not get it again as long as I keep him on fluids. Since then his ck level have went up and down over the past year. This past Janurary he woke up and could not walk they said the flu attacked his brain but the mir showed that the brain was healing its self and in three weeks he was walking. But he changed completely he quit his job, his grades dropped, no longer laughing and making jokes, and no friends. I took him back to the doctor and now his ck level are begining to rise and his protein and on top of that while doing track practice his heart rate rose of 200 beats. I know in my heart that the doctors are missing something. I don't know what else to do I am afraid he might be on the field and callapse.


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