April 21, 2021 at 12:47 pm #19401110 month old with elevated CK levels
Hi. I have a ten month old who we’ve had a few problems with since she was 6 weeks old. Her legs seemed to really give her problems getting her to sleep and then waking her up – we actually ended up putting a heavy pillow on her legs at night to get her to sleep. This wore off a bit as she got older but then I started to notice muscles twitching in her fingers and toes. Sometimes they were big jerks that would wake her up but usually just small twitches that you couldn’t see, but feel if you were holding her hand or feet. My male partner who is 38 also has the same issue, I can feel his muscles twitching when I cuddle up to him at night, but he can’t feel it.
We got referred to the doctor who did some blood tests and it’s come back that her CK levels are slightly elevated at 408 and that they want to send her for an EMG. Obviously I googled CK levels and Muscular Dystrophy was the first thing that came up. Which is terrifying to say the least. However, from a quick look, she doesn’t seem to fit with any of the other symptoms. She is weight bearing, crawling, can hold her head up (we joke that ever since she was born, she is TOO head strong!). So I have a few questions if anyone can answer them.
From what I can fine, normal CK levels for her age should be 300 or less. Is that right? If that’s the case, is 408 anything to be concerned about? What are the other causes of CK levels? If her CK levels are high now, will they continue to increase if she does have a sort of muscular dystrophy?
With regards to the EMG, I’ve heard it’s a pretty horrible procedure, has anyone got any advice or experience about it?
Also, has anyone else’s child had elevated CK levels but no other signs of MD?
My mind’s all over the place xgiddyG2001ParticipantPosts: 0Joined: 21/04/2021April 22, 2021 at 1:22 pm #194133Reply To: 10 month old with elevated CK levels
Hello and welcome Giddy, it must be a worrying time for you. But it is important to remember many things. First of all, Mr Google is not a good place to be looking if you need a balanced approach to understanding what is going on. We have all done it, but it can give us unnecessary fears. A short search of the posts on the forum will show how high CK levels can get for those of us with MD, and whilst your daughter’s level on this one test is high, there may be a perfectly reasonable explanation for that as there are many reasons why levels can be higher than ‘normal’. As you know your daughters level although high, it is not too much out of normal, and it is only one test. You also need to remember that your doctor seems to be taking absolutely the right action and is asking for EMG as well. Depending on how they approach it I think you will find that the clinicians who do the test will be concerned about keeping any discomfort to a minimum, and they will have done it many times before. They are experts, and will know how to do it so she will not be distressed. Again, reading about it can cause many worries, talk to the exerts where you have been referred and I am sure they will put your mind at ease. Combined the two tests, and maybe others, will help your doctor move to a better understanding of what is going on. Many on here, including myself, have said many times, that you need to be patient in finding our the correct diagnosis. To rush matters and get a wrong diagnosis will not help her. It may take a little time but you will get there. A good thing that you can do in the meantime is keep watching her, and what she gets up to. Such information to a clinician is vitally important, and will help direct them to the correct conclusion. You clearly have been watching her, but keep on doing so, keep a diary if there any changes, then you can show that to the doctors trying to help you.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015April 27, 2021 at 3:52 am #194270Reply To: 10 month old with elevated CK levels
Thank you for this. I’m awake because she woke an hour ago and couldn’t get back off to sleep because of twitching. She’s now lying in our bed and she’s only lightly asleep as her muscles seem to be keeping her awake. I’m so worried there’s something seriously wrong with her. But yes,I agree about Dr Google and will try and step back.
Could I ask,where could I find the levels of CK she should be showing?
Also you mention perfectly reasonable explanations for why her CK levels might have been elevated. Can you point me to anywhere that says reasons this might have happened. I can literally only find mentions of MD when I search increased CK levels. Or if you could tell me other explanations might be,that would be great
Thank you again for taking the time to reply.giddyG2001ParticipantPosts: 0Joined: 21/04/2021April 27, 2021 at 1:24 pm #194279Reply To: 10 month old with elevated CK levels
Perhaps you might find this helpful?
You will also find there is not a lot written about young children and CK levels. It is not a standard test, and I suspect most GPs wold not be keen on doing it unless there are other diagnostic indicators. Thus there is a lot lower pool of suitable children that you would find with adults. I would also ask you to remember that partly because of this and partly because of the way things are there are a range of of values, and mostly because we are all unique. This I am sure you know but it bears repeating. The CK test is not a diagnostic indicator, it i what it says it is, a test. Together with other tests and observations your neurologist will be able to make a diagnosis. This does not, and cannot, be quick. Making quick diagnoses is fraught with problems believe me. Please try and be patient. It is easy to say and hard for you to do. It is natural for a parent to worry when something is wrong with their child, I have been through it countless times with my children and grandchildren, but it sound like you are in good hands and I am sure that they will do their very best for your daughter.
If you need more info please do come back to us.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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