Sleep study before christmas

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donnajane

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My little man had appointment with sleep specialist today and she was great. After watching some footage she said she has no idea what they will find as his sleep is such a grey area but will try to help us. She explained one thing she will be looking at besides his strange movements and what look like they could be seizures is to see if his brain is doing the normal sleep cycle. She is organising it at the Hospital where his Neurologist is so she can get his notes and he will then have easy access to his files. It will be nice to have a couple of his specialists actually talking instead of emailing and sending letters. She said they are booked out till next year but he needs a study soon so has put him down for the next cancellation. Work has been great as we have been told we may only get 24hrs notice or even less my boss said just sms me and I will cover your classes. So glad someone is going to look at his sleep as it is not good. This morningm, after him having a very "active" night, he woke up his brother and sister around 4am, usually he only wakes his sister. I ended up having to bring him into our bed so they could get back to sleep. They each have their own room so that’s how loud he can be. I also liked how she said if we don’t get any more answers she will look at what to do next to help him. As per usual he was super normal in his appointment sat still for all his test, said thank you, went yay when she had done listened to his breathing but then in the car on the way home he had what appeared to be a strange spasm/cramp in his leg and was NQR for a lot of time for the rest of the day. Just wish he would show the Dr’s what he is really like. It’s almost as if it takes him every bit of energy to get through these appointments then it’s too much afterwards. Only 3 of the 7 Dr’s he sees has seen the real child with seizures and strange behaviours the others only have seen fleeting moments or nothing at all.
Just hoping we get a call in the next couple of months for appointment.
Donna
 
donnajane

I hope that study comes quick for you. It will help relieve some of your stress.
 
It's great to have another doctor advocating for you and your guy. I hope the study happens quickly too and yields helpful info.
 
Thanks. I hope he has the sleep study too soon. His sleep is so all over the place and the he is going through a really bad patch at the moment, never good but this is just rediculous. To watch you 21 month old try and sleep but have his body arch back like in a huge stretch or suddenly jerk/spasm is horrible. Our main thing we want to know is if they can help him sleep better,or get better qaulity sleep. Anything else they can tell us will be a bonus. He has never slept through the night due to what's happening. We feel so sorry for our little man but then this is all he has ever known.
 
It seems like there should be something they could do to help his sleep.
 
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