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Does anybody have experience with this? Please help...High CK

post #1 of 11
Thread Starter 

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. Google is tough. I figure some Mama knows something.


post #2 of 11
It does sound metabolic to me. That doesn't mean it has to be something terribly scary though. Do you ever see brown urine after these episodes?

CPT II for example might be a possibility https://www.counsyl.com/diseases/carnitine-palmitoyltransferase-ii-deficiency/ (the myopathic form). In this case you would just watch those kidneys during and episode and try to do things to prevent episodes as much as possible. It will be ok. I want to say that would be a skin biopsy though rather than muscle. I know my son was tested for CPT I and CPT II (he does have muscular myopathy because of a metabolic condition) via skin biopsy after some blood tests were very abnormal.

I would ask that doctor exactly what they are testing for via muscle. That's a pretty invasive test. My son was suspected of having mitochondrial disease. We decided against muscle biopsy. There is new technology already in place and/or coming that will make diagnosing even that blood in my understanding. I'd ask some more questions.

Many metabolic conditions are manageable. This really sounds metabolic to me. I know what it is to worry.
post #3 of 11
Thread Starter 

Thanks so much for responding- I have been searching for answers, as you can imagine. I read that link, and it sounds similar with the exception that my son only has these attacks in the summer- in the heat- and only after a fever ( even slight). It also is only related to a sore throat. He could get a stomach bug in the summer, for example, and not have a leg episode. 

  The dr told us to watch the urine and its been ok. She also said she didn't want to do the biopsy unless she felt she could get good info from it because its invasive- she's not pushy at all and wanted to consult with another dr and get back to me next week.

Thank you again!

post #4 of 11
Heat can certainly be a trigger in CPT II. I hope it is something like that. In the progressive muscle diseases you would see those elevated CK's constantly in my understanding...that's probably why the normal levels at other times was reassuring to genetics. My son does carry elevated CK levels but relatively low compared to the serious muscle break down diseases. So even if he was higher than normal at other times it wouldn't necessarily be catastrophic. Still, I think the normal levels is extremely encouraging.

This really sounds more like something more benign to me. I'd really wonder about CPT II honestly though I'd think they would have already investigated that. The blood work may be the first step in that investigation though. Did they do carnitine profile or do you know what they ran? That might give me a hint on what they are thinking.

I've discovered that metabolics is a constantly expanding field. They discover new disorders. In fact, my son's skin fibroblasts were recently tested for a newly discovered one they thought might fit (it's not his disorder..we're still unspecified). He had that skin biopsy at almost 4 years old and he's 8 now. The technology is coming though when this will be easier. I would certainly treat the muscle bx. as last resort.

I can give you the symptoms of a mitochondrial disorder but you would see more than you're seeing health wise. He sounds like, other than these episodes, he's quite healthy and active. Try to hang onto that.
post #5 of 11
Thread Starter 

I've asked the doctor to send me results as she gets them. I don't know specifics about many of the things she's checking for, but she said some ( like ck) come back in a few days and others will take a few weeks.

 Thanks so much for your encouragement and help :)

post #6 of 11

Have they checked him for Lyme Disease? You can get similar pains ...and the 'phantom' fevers that come and go.............

ticks can be so so super small that it can hard to spot....(also, make sure they are checking his Vitamin D3 levels...not just D, but the D3 that will also tell you if an underlying infection, like lyme or something else is going on.........)

post #7 of 11

Wait a second..your post says that it all starts with a sore throat...........are you able to see an ENT perhaps? (and if a doctor does a strep test, request both a rapid and a culture...culture should check for strep and staph ....)

post #8 of 11

This may be too simplistic, but has your son had a nutritional work up? Is it possible he's deficient in magnesium or something like that? Or, an allergic reaction? 

post #9 of 11
Thread Starter 

I'm pretty sure they have checked everything like that- I know they suggested a high carb diet and lots of water when he's having an episode. I know they checked his potassium, but I 'll look into magnesium. Wouldn't that be nice! We had wondered about an allergic reaction- possibly to the ibuprofen he was sometimes on the week before the leg trouble ( when he may have had a fever/sore throat/upper respiratory symptoms). Generally, I give him Hyland's cold care, or arnica, or whatever when he needs symptom relief, but sometimes he has had Motrin. The first summer it happened he was only 22 months. He had been running around our beach all day, then the next day screamed when standing and crawled everywhere. I took him to the pedi and she wondered if he may have  somehow hurt his leg or hip while running on the sand or something. He had motrin then, foot X-rays were ok...

  The next summer, same thing. Same leg. After the dr asked I remembered the week before he had had a quick fever/cold type illness ( I hadn't brought him in to the dr for it) . I treated him homeopathically as usual- he got over it, then one day after being okay for almost a week- same thing. Back to dr- same leg....

   The third summer- same routine, but the other leg. 

   The summer he was four, it was both legs, and has been ever since. He has had one episode each summer- well, once we made it to November, but it was Indian summer here, and we ended up at Children's Hospital. The dr there ( he was now seeing a rheumatologist) saw him and did bloodwork. The strep test was negative, but he was covered in what the dr said was a "strep rash". (Scarlet fever?) I don't think they ever checked his CK until about 18 months ago. He has had a neuromuscular doctor since then, but she has only seen him after an episode when he's almost well. He was in the ER and they gave him IV Naproxen and fluids. He has had prescription Naproxen since and we are to give him it twice a day, for at least ten days, when he gets a sore throat/fever and or leg problems. 

  Generally, it takes about 3-4 days before he can stand. Then another ten or so before his gait is normal and he has his strength back. While recovering he walks very much like a person with spastic CP does. He has never, thankfully, had this in the winter. There is ALWAYS a sore throat .

Another strange, but I think it must be significant, thing happened once. He was on the couch once when his legs were hurting and his legs and feet were freezing cold. Icy. I wrapped him in a blanket, then put him in a warm tub. His hands/arms were fine. Sometimes he complains of tingly legs when sitting in the bathroom and still likes to use a little foot stool. ( circulation?) A couple of times, but not lately, he limped coming out of the ocean and yelled that his legs hurt. Now the water is generally cold- but he goes in anyway. Just when he came out they hurt. 

  I have found a homeopathic specialist nearby and plan to go next week. We spoke briefly and she said sometimes kids can have episodic reactions to the polio part of a vaccine. He has had almost all of his vaccines, but most were delayed and all were spaced after 18 months. I didn't know enough when he was younger :(

  Has anybody heard of that?

Thanks so much for replying and trying to help. I really, really appreciate you taking the time to read this and share ideas!

post #10 of 11
To my understanding via my own son's elevated numbers these levels indicate actual muscle break down in these episodes hence the severe symptoms too. Just based on the elevations alone my son received a diagnosis of muscular myopathy from genetics.

Therefore I am saying it is, in my understanding, nearly certainly metabolic and not other issues unless those issues would attack/break down muscle.

But, OP, that doesn't mean it's something horribly scary. In fact, that these things are so rare, levels go back to normal, he goes back to normal, and he doesn't have other health issues points, to me, toward one of the less serious disorders. My guess is you just need to watch him for kidney damage in those episodes (the tea colored urine).
post #11 of 11

kanga2roo, what about asking a question to Bob Sears, the pediatrician on our expert panel here on Mothering? 


I think you're onto something with your descriptions of this recurrent events. Good luck with the homeopath.

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