Viewing 3 posts - 1 through 3 (of 3 total)
  • #164745
    Our baby has high CPK

    Our 8-month old son has a CPK in the 500s as of a month ago, and it was in the 300s three months ago. His CK BB was 1%. We have an appointment with a musculoskeletal neurologist next week. Worried that he might have MD. He was a little late in rolling over, and still hasn’t sat up by himself and hasn’t come close to crawling. He hates being on his tummy – he will immediately roll over to his back. Should we get his CPK tested next week, or wait a few months? I’m worried that if he does have MD my wife will not be able to handle it. I know there is a muscle biopsy but is there a blood test for MD? Is there a good reason to get an early diagnosis – can exercises be done or other interventions to help lessen future symptoms? What questions are good to ask the doctor next week? Thanks.

    michaelf
    Participant
    Posts: 0
    Joined: 06/12/2018
    #164765
    Reply To: Our baby has high CPK

    Hello and welcome to the forum Michael. it is indeed a worrying time for you. The first thing to do is not to panic on the basis of those tests as there could be other explanations for it. Clearly going to see the musculoskeletal neurologist is by far and away the best thing to do. He or she will be able to make the correct diagnosis. once that is done then they can also advise on the way forward with any treatment that may be required. as a parent I know that you will want the process to be as quick as possible, but being quick does not necessarily mean being accurate. Try and be patient s best you can. Clearly at eight months you have started the process as early as you can so any treatment that might be indicated will be being started at the earliest possible time. You will be well supported by all those in the MD community IF it proves that he has MD. My own son was around fourteen when he was diagnosed and has gone on to make a good life for himself and owns his own home at the age of 35.
    Make notes of all your concerns about your son, as often in a medical appointment you can easily forget things. Have a list of questions prepared if you need to, but I suspect the consultant will already have answers for most of them. They may also ask about any family history so having a good understanding not just of yours and your wife’s health but also any siblings or your parents may be helpful.
    Please do come back to us and let us know what is going on. We are here to help.

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #164799
    Reply To: Our baby has high CPK

    Thanks. I’ll let you know what happens.

    michaelf
    Participant
    Posts: 0
    Joined: 06/12/2018
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