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  1. #1
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    Default Hypotonia - waiting for answers, feeling :(

    Hi everyone

    My 7.5mo son has hypotonia and attends physio once a fortnight. We are still waiting on answers as to the reason behind his condition. He tires very easily and we are told that physio will need to continue indefinitely.
    He is scheduled for an MRI but there is a 6mth wait. He also had bloods done which apparently came back with some irregularities and are being sent from further testing.

    I would love to talk to someone who is going through something similar. This whole experience is very stressful and also isolating as my son does not look any different to anther baby so even my friends will dismiss me and say things like "every baby develops differently" or "ohhh but my baby was slow too"

    Xx

  2. #2
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    Hugs. My daughter has hypotonia which is part of her syndrome. She's had physio since she was about 3 months old.
    Physio was great with getting her crawling and walking. She still attends physio and she turned 2 in November.
    What are they looking for? Does your son have any other issues?

  3. The Following User Says Thank You to Tamtam For This Useful Post:

    karennicole1  (18-02-2015)

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    Hugs xxxx

    can you ring around for another place to do the MRI? When we did it, we checked with another hospital that was a little further away but got in within 2 weeks. It's good to check things off the list when you can

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    karennicole1  (18-02-2015)

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    Hi Tamtam

    I'm so glad that the physio helped with your daughters crawling and walking. Physio has been great for DS too he has improved so much since we started.
    He also has hypertonia in the left arm. He has only a few other things like a "side preference" using one side of his body that has improved heaps since physio. He's also been found to have a lazy right eye which is the same side as his preference which is why they want an MRI.

    The neurologist said they're looking for brain damage but wasn't specific? Also for any metabolic disorders which is why they ran the bloods. To be honest they're very vague and tend not to say specifically what it is they're looking for

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    Hi zooey

    Thanks so much that's a great idea I'll try that
    Xxx

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    zooey  (18-02-2015)

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    Ps sorry Im still getting the hang of these forums!! So hopefully I'm replying okay!

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    zooey  (18-02-2015)

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    Hi. How are you going?
    Does your little guy have any other issues? Like feeding or growth? Babbles etc?
    As hopefully the hypotonia in isolation is just that. . And not linked to other things.
    Blood tests take ages to come back! So frustrating and stressful.
    Feel free to pm me or chat here if you need to talk. xx

  12. #8
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    Quote Originally Posted by Tamtam View Post
    Hi. How are you going?
    Does your little guy have any other issues? Like feeding or growth? Babbles etc?
    As hopefully the hypotonia in isolation is just that. . And not linked to other things.
    Blood tests take ages to come back! So frustrating and stressful.
    Feel free to pm me or chat here if you need to talk. xx

    Hi Tamtam

    How do I PM you??

    He hasn't any growth issues (he's huge now) but feeding has been an issue since he was born he's gotten a lot better but the bottles were always a struggle and solids are very very slow. Doctor isn't sure if it's related to hypotonia tho as he was recently found to have an upper lip tie that was missed. His major issue is fatigue. Does your little girl get very easily tired when doing things like playing?

    Also they've noticed some issues with his eyes a lazy eye (right) and a squint when he's tired (left)

    Yes blood tests are so frustrating!! I so hope it's just hypotonia and not something else it just is awful not knowing

    Xx


 

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