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  1. #71
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    I know this is an older thread but so need to vent. My son has hypotonia and attends physio fortnightly which will need to continue indefinitely if he's to meet his milestones. He's scheduled for an MRI and EEG (he's been having episodes of shaking) and we are waiting on some blood results that we are told have some abnormalities and needed to be sent for further testing.

    but because he looks no different to any other baby my husband and I always get dismissed like "oh every baby develops at different rates" "but he's so attractive how can there be anything wrong"?! It makes me want to SCREAM

  2. #72
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    Quote Originally Posted by karennicole1 View Post
    I know this is an older thread but so need to vent. My son has hypotonia and attends physio fortnightly which will need to continue indefinitely if he's to meet his milestones. He's scheduled for an MRI and EEG (he's been having episodes of shaking) and we are waiting on some blood results that we are told have some abnormalities and needed to be sent for further testing.

    but because he looks no different to any other baby my husband and I always get dismissed like "oh every baby develops at different rates" "but he's so attractive how can there be anything wrong"?! It makes me want to SCREAM
    Mega hugs.

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

    karennicole1  (18-02-2015)

  4. #73
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    Hugs hugs hugs

    Totally understand where you're coming from.

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    karennicole1  (19-02-2015)

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    I am going to post on here soon. I have had it. But I need to calm down before I can write it.

  7. #75
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    This has happened to me quite a lot in recent weeks especially from family it hurts my head just thinking about it. I've seen it's an old thread but good to let it out if anyone wants to read. My DS just had a diagnosis about a month ago of Mecp2 duplication syndrome, it has many characteristics of autism but is in no way ASD, anyway most of my DH's family keep saying 'oh this will help him blah blah and this' nothing will bloody help him he has a syndrome that will make him regress after time, we've already seen regression in him. I know people are trying to help but inside I'm killing thinking shut up you are obviously not well informed on his illness so put a sock in it.

    Also one of the teachers at his toddler group the otherday asked how we were, I haven't seen her there for a while, I say well ok still having down days and it hurts thinking to much about it all she then goes on to say really you've known for a while now are you not over it yet. I mean wtf it's been about a month since he was diagnosed I'm still learning new things about his syndrome, no I'm not bloody ok lady jog on... Grr haha good to get it out.
    Last edited by zoz; 11-06-2015 at 21:23.


 

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