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  1. #71
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    Thank you

    I'm not sure about a specific speech disorder but he had so far been diagnosed with Sod, global development delay, severe hypoglycemia, and a possible diagnoses of hypoinsullism (which as I understand is a rare metabolic disorder) , which we are headed up to the material in a couple of weeks to confirm, it is genetic apparently so if its confirmed I'm really gonna feel like sh!t




    DS 2 years + DD 1 year + bellybean = the reason my heart keeps on beating <3

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    Omg my spelling is shocking, auto correct once again! Sorry! We are heading to the mater not material lol

    DS 2 years + DD 1 year + bellybean = the reason my heart keeps on beating <3

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    It sounds like u have alot of unanswered questions, id be writing every single one of them down, take them to every specialist appointment with you, ask and keep asking until you know.

    The thing i dont know about delays, can those delays be caught up? Or is it permanent delays?

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    I think his delays can mostly be caught up, all his therapists do a great job. I ask a million questions at my pead appointments and even she says that at this stage we (me and his team of doctors) all have more questions then answers at the moment, which is really frustrating as he has episodes where he goes to sleep fine, and won't wake upcoming the morning, he is unconscious dangerously low blood sugar,which makes him unconscious and is hypothermic with temps around 30, and also starts fitting, and while we don't know what the cause is it is really hard to prevent it. He has had two major episodes and we almost lost him. I think this is thereason for his GDD and possibly his SPD. So got a bit off track..

    DS 2 years + DD 1 year + bellybean = the reason my heart keeps on beating <3

  5. #75
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    I'm so happy that this thread is still active

    I am completely snowed under with work and postgrad study at the moment and still trying to grab 5 hours sleep, but will endeavour to pop in soon and respond appropriately.

    To everyone

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    Quote Originally Posted by spitthedummy View Post
    I think his delays can mostly be caught up, all his therapists do a great job. I ask a million questions at my pead appointments and even she says that at this stage we (me and his team of doctors) all have more questions then answers at the moment, which is really frustrating as he has episodes where he goes to sleep fine, and won't wake upcoming the morning, he is unconscious dangerously low blood sugar,which makes him unconscious and is hypothermic with temps around 30, and also starts fitting, and while we don't know what the cause is it is really hard to prevent it. He has had two major episodes and we almost lost him. I think this is thereason for his GDD and possibly his SPD. So got a bit off track..
    Oh wow. I don't know what to say. That would be absolutely terrifying finding your son unconscious in the morning.
    I agree that his physical condition could be slowing down his mental development.
    I am hoping and praying for you that they will soon find a cause for his problems or at least a good way of controlling them.
    If only they can control his physical health problems, then you can all focus on helping him mentally catch up.

    You are dealing with all this while having a 1 year old as well as another bub on its way. That shows how strong you are hun. I admire your spirit and strength. Though do not ever blame yourself if your son has hypoinsullism. It's a rare condition and you didn't know it ran in your family.

    As I mentioned in a different thread before, I believe our children pick their parents. Your son picked you as he knows your endless love for him will give you the strength to fight for him and do whatever you can to help him get through the rough times and give him the best possible start in life.

    Please keep us updated on how you go at the Mater

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    I know this is an old thread, but I'm just looking for somewhere to chat about SPD. My son has it, without an official diagnosis as it's quite hard to find someone to diagnose.
    He also toe walks as part of his SPD. We've seen physio sand podiatrists about it and everything is fine physically so we just see them every 3 to 4 months for reviews.

    Would love ove to connect with some more SPD families. Mainly for ideas for sensory tools to use and sensory diets. We've only seen the OT 3 times but she's already been incredibly helpful.

    I'm just starting to come out of the other side of my frustrations with the medical profession who have fobbed me off for nearly 6 years, telling me my son would grow out of everything. He hasn't. It was by investigating a private OT on my own who then asked my GP to refer us for further investigations that anything has happened.


 

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