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Thread: Hi - new to forum

  1. #1

    Default Hi - new to forum

    (Suspected Hypertonia in a child)

    Hi,

    Not sure where to post this question so i apologise if this is not the correct place but please feel free to point me in the right direction for future posts.
    I have a 20 month old little boy and we have noticed over time his speech is not developing as well as his twin sister and he was 'floppy' to pick up and got tired easily. He was crawling at 10 months & walking at 13 & showed no signs until the last 6 months really of a problem. His knees started to turn inwards when he walked and his joint (fingers etc) are very flexible & he is a little clumsy in general. He is also not talking as much as her but can say the words as he does occasionally and he understands as much so i would say his intellect is there. He avoids chewy foods as i think that he finds them hard to chew, even chewy candy!

    We went to a Paed. & he is sending him for CAT scans etc but we are now in Limbo really as he did not explain what the longer term prognosis is to my wife or really what the treatment is from here (unfortunately i was not at the appointment). He just said we will have to wait for the results of the test before i tell you anything. She was not really in a state to understand anyway as when he mentioned brain problems she freaked out & switched off to the rest so I'm sure if she was in a state to ask him the right questions he would have told her.

    I have done a lot of reading and 'google' research & it looks like Physio, Occupational Therapy & Speech Therapy are the treatments that are required. We are fully committed to doing whatever it takes to give him the best chance but my question is - what 'generally' is the longer term prognosis? In a best case scenario will he be 'slow' or 'clumsy' or have physical disabilities etc.

    I would say from the research i have done so far he seems to have a milder case than most.

    Thank you in advance, Nick

  2. #2
    Distinguished Community Member
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    From what I have read, some of these conditions are slow to develop, so without identifying the condition, the Dr wouldn't be able to give a prognosis. Also, until the test results are in, I can understand why the Dr wouldn't want to go by guesswork. I would try to keep an optimistic attitude at this time.

    Further posts can be put in the Child Neurology folder, which can be found from the main index of topics, in the third or fourth batch down.

  3. #3
    Distinguished Community Member houghchrst's Avatar
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    Welcome Nick to Braintalk though I can't imagine the fear and heartache that has brought you here. Feel free to post wherever you want. As Mal said there is Child Neurology, there is Chit Chat for a short break from the stress of everyday, there is Emotional support if you need a shoulder to cry on. Depression which I know could be a battle for both of you.

    You really should try to make the appts. or someone who is a step away from the situation so that they can make sure your wife understands all that is going on. Help your wife stay centered. You both are going to need a lot of support. Take notes, make a list of questions. Maybe a support group near you to attend at a local hospital.

    You will need all the love and support of friends and family. Use it. Plus now you have us here.

    Lots of prayers out to you and your family.

  4. #4
    Distinguished Community Member Ging's Avatar
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    Welcome to brain talk Nick, I do hope you will post after the results are in. We have several forums here and other than the child neurology , we have emotional support , chit chat and so many wonderful people to reach out and offer what ever they can, we support , listen to the frustrations , give cyber hugs and share our experiences .we are not doctors, but we do understand the toll that illness can take on the hearts and live of family members. Please stay with us and if we can offer support, we will be most happy too ! Ging

  5. #5

    Default

    Thanks Guys,

    I will post again when we get some hard results. After having time to reflect and looking back on family history my Cousin who is now 40 showed the same symptoms as a child but back then he was just classed as lazy and not able to concentrate at school. He now lives a normal life so that gives us hope.
    Hopefully we have caught it early enough to make a difference.

    Cheers, Nick

  6. #6
    Distinguished Community Member
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    What you can do is to encourage the doctors to give the child high quality care,
    so that he has the best possible outcome.

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