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  1. #1
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    Default Baby has odd behaviours

    Didn’t really know where to put this or what I’m asking really. I think it’s a half ask, half vent/release.

    He’s 8.5 months old, We’ve been to a physio quite a few times about his problems and she was helping us with exercises and “treating the symptoms” basically, which was fine. We finally got into a paed about 6 months after the referral was sent in, and he looked at him and everything but I got told to send him to a speechie (he doesn’t babble) and come back in 6 months to see if anything changed.

    I don’t really want to be waiting until he is like a year and a half old before we *start* looking at stuff so we have started enquiring about Early Intervention centres. We’ve never dealt with these before so I’m not really sure what they do. Any hints?

    We originally started going to physio because he was very coneheaded (csection birth) and stayed that way for some time. It’s rounded out now a fair bit but it’s still big at the back. He also has bumps between the skull plates but X-ray and paed said no issues.
    He then had problems with flexion/extension. He couldn’t bring his arms in front of him, he was always stretched outwards and couldn’t curl up. When placed on his belly his head, arms and legs would raise backwards into a “U” shape. We worked hard on that and it seems largely on its way to being better.
    He still holds his hands funny though. His fingers sat weirdly when he was born and that hasn’t really changed but this is how he sits in his pram etc
    Attachment 97996
    Pulled back like a kangaroo. He’s recently learned to roll over and he desperately wants to crawl but when he goes on his hands and knees, his hands go upside down, so his palm is towards the roof and the backs of his hands go on the ground.

    He had an arm flapping problem which we also worked on. It didn’t seem like a stim or a seizure. Just an involuntary movement. It bothered him as he hit his face with it a lot. It’s still there but not as severe. But he’s twitchy all the time. He’s either shaking, or his hands are swirling around. When you sit him up on your knee, he rocks. When we sit him in his high chair, he often shakes. He can’t pick up food off the tray as his hand kind of just points and he pushes the food around.

    I don’t know really. It’s nothing overly significant, it’s more like 1000 tiny things that just all add up to him seeming extraordinarily awkward.

    Two of his older brothers have autism so I know that’s where the doctors will naturally lean but he’s so young and it really doesn’t seem like that at all. His twin is fine, she doesn’t have any of the same issues.

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    Starfish30 (02-11-2018)

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    Can you get a referral to a neurologist from your GP? They may be able to test for why the tremor is occurring. My son recently saw one for a combination of things (like you said, nothing significant but lots of tiny things added up). We're still not sure what's going on but have at least ruled out a lot of conditions. It's so stressful wondering what it could be and becoming hyper vigilant looking for symptoms. My advice is stay away from google! A paediatric OT may also be helpful. Good luck, I hope you get some answers soon.

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    no advice to offer, but i will be thinking of you. I hope you find some answers quickly. hugs, marie.

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    oh wow thats alot to be going on!

    I definitely recommend pushing hard and early for help. As im sure you're aware, even if its nothing but a simple delay and easily fixed, its best done early. If it turns out to be more significant, at least the ball is rolling.

    Through work, i came into contact with an absolutely amazing child.... they were older when i came into contact with them (toddler), but a few things you've said have stuck in my mind (flappy movement, speech, physical development/concerns and head shape) as similar to them, and id never seen it before.

    I Don't know much about how this child was an infant though, so i could be way off the mark and completely misplaced in my thinking and id hate to have you freaking out about a potential genetic condition, when its completely irrelevant to your boy. (given you've said his twin was a girl, ive assumed fraternal)

    Im happy to explain a bit more detail if you're interested, but pleaseeeee remember im NOT a doctor, and havent met your son.

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    I’m happy to hear what you think. I’m trying to get an idea I suppose but I refuse to google as that’s never good.

    I spoke to the Early Intervention place today and they’re sending me out a referral to get the GP to fill out so I can jump on their waitlist.

    I think it’s just the whole waiting thing that stresses me out. His physio says that a lot of his issues seem similar to ones you would see in super prem babies except he was 36+5 so not really too early, so it’s confusing for her too.

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    Quote Originally Posted by Ahalfdozen View Post
    I’m happy to hear what you think. I’m trying to get an idea I suppose but I refuse to google as that’s never good.

    I spoke to the Early Intervention place today and they’re sending me out a referral to get the GP to fill out so I can jump on their waitlist.

    I think it’s just the whole waiting thing that stresses me out. His physio says that a lot of his issues seem similar to ones you would see in super prem babies except he was 36+5 so not really too early, so it’s confusing for her too.
    Its a hard one... most children with this condition aren't diagnosed till much later (3ish) but I guess that could be in part to the system and ruling everything out, by the time all investigative etc are done.

    Anyway. Food for thought. I might pm you the babe of the condition. I think it's fairly rare and I'd hate to have it being an identifying thing for the child/ parents, more so.

    I'm sure if I have you the name and you had a quick Summary you may be able to discount it yourself if some things don't sound like your son. Hopefully

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    You mentioned that two of his siblings have autism - did they have genetic screening done at all?

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    Quote Originally Posted by Cue View Post
    You mentioned that two of his siblings have autism - did they have genetic screening done at all?
    They haven’t. It was mentioned to us once, before the younger one was diagnosed, that we could have the older one tested to see if he has some “abnormal gene” that they’ve recently discovered is present within some kids with autism. That was all that was mentioned though, and it was just in passing from the paed. We never got any actual information on that.

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    Quote Originally Posted by Ahalfdozen View Post
    They haven’t. It was mentioned to us once, before the younger one was diagnosed, that we could have the older one tested to see if he has some “abnormal gene” that they’ve recently discovered is present within some kids with autism. That was all that was mentioned though, and it was just in passing from the paed. We never got any actual information on that.
    It might be worth revisiting it. More than likely it will rule out a genetic problem, but I think it’s worth knowing for sure. My opinion on this is of course influenced by my own experience and I’m certainly no expert.

    My DS was recently diagnosed with Fragile X, which is the main genetic cause of autism (although he doesn’t have ASD, he was originally diagnosed with global developmental delay). His presentation was quite different to your DS but I think that given you have other children with ASD it’s something the paed should be screening for.

    As a PP said, I don’t want to freak you out. I’m not a medical expert and there are probably a hundred potential reasons for your DSs issues. Hopefully it’s nothing more than a temporary motor delay.

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    Once we move, we are going to see another paed if we can. The one we used to see was really good but she moved. This new one was okay, just not super thorough I suppose. I’m not sure who I would see about genetic testing though


 

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