Special Needs
st.augbride
member
Anyone test with a high CK (or CPK) level?
st.augbride
member
Ds keeps testing with elevated creatine phosphokinase (CPK) levels, and it has been rising. It was 240 at 10 months, 280 at 12 months and now 400 at 17 months. Our physiatrist is supposed to call tomorrow, but I'm worried about what this could mean and can't seem to find ANY info. I know a level in the thousands is indicative of muscular dystrophy, but I can't find anything about lower elevated levels. Anyone test high on this?
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Re: Anyone test with a high CK (or CPK) level?
Yep. DS highest CK was over 150,000. At 18 months the highest they recorded was over 10,000. High levels can be indicative of MD, myositis, and a whole long list of things. They like to keep it under 100, but DS can cope with minor irritation/pain at 1000. I think the first time he had severely high CKs at 18 months they tested him for a laundry list of things, but they also did a muscle biopsy. Honestly, I wouldn't worry until they do further testing because there are so many reasons why it could be elevated.
How often are they doing bloodwork to check levels for trending? Do the levels ever normalize? DS' trending looks like waves in the ocean. What other symptoms do you notice, muscle wise? Did your DS have any viruses/infections when the levels were taken? These are things I've been asked or noticed when DS had elevated levels.
He was checked at 9 months, 12 months and now 17 months. Our developmental ped suggested we check again in 3 months, but our physiatrist wants us to have a bigger lab panel done because of the elevation from 280 to 400 (well, she is someone we consult with through the NIH but is VERY difficult to get a hold of and pin down, which is why I feel lost as she's the one who first wanted this testing but now I feel left in the dark). All 3 times his levels were elevated and seem to be slowly climbing, but again I have no idea what this means. What's frustrating is that he's had minor muscle and neurological issues come and go his whole life, but recently he's been doing great and they haven't even presented at all! About a month ago he started walking everywhere, so this is just very disheartening when I thought we were leaving some of that behind. He does still have benign paroxysmal torticollis (a head tilt that comes and goes and switches sides--and it's rare so of course no studies out there associating the condition with CPK). He wasn't sick at the time of the blood draw, so I don't think that can explain it. I do wonder if he has GI issues that can contribute as he did most of his life and is a terrible eater.
So what are they doing with your son now? How often is he monitored and what does it mean for him? What kind of specialist is overseeing this for you? Thanks so much for your help.
I can see them wanting to expand the panel. There are quite a few other things that they look at to try and narrow down what is going on, besides just the CK. They do bloodwork monthly for DS, more frequently if he's not well, or he's experiencing pain/discomfort in his muscles (he's even had it daily when he's inpatient, so they can track it). DS didn't start walking until he was 16 months, and a month later he couldn't walk, and his muscles were in pain. This was a week or two after having HFM (CK of 1400). Not every time he had a virus did he have elevated CK.
But I did narrow it down to him getting sore or weak at other times, like being out in extreme heat for too long, same for cold, overexertion and not eating/low bloodsugar/dehydration. So that is what made me think that the initial dx of polymyositis was wrong (doesn't fit). But they didn't have any other answers as to what fit better - that was years ago. We're waiting to see if the last set of tests come back positive for CPT II. IDK how many things they've tested for. The first time at 18 months, it was a lot.
I understand the switching sides for the torticollis. Makes me think it's not specifically muscular, in the way that it's tied to a specific muscle. DS' legs were like that. It completely confused the drs at first, they honestly thought I was messing them, the non working leg would switch sides. It made sense though, the inflammation was migrating.
Right now he's seeing Rheumatology, all the Neuro-motor and Neuro-muscular specialities (8 at our hospital), and now Metabolics. This is just for his muscles. He also sees Nephrology, Urology and Cardiology, which is sort of related. We had been told that he would outgrow this by his teen years. I think they have everything wrong, this is for life. If you check out the two posts below, there's more there as well.
Hopefully they can figure out more for your DS when they explore his bloodwork a bit more. I feel you on the eating thing, DS has always been a crappy eater. At least now he'll sit for one full meal (despite his appearance, see post below, he struggles to take in 800 cal, he just won't eat.).