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My son has dystonia which causes his muscles to contract and spam. He goes to bed fine but wakes in the night. About 8 times on average. He wakes screaming which i'm not sure if he is in pain or not. He will be 3 in december. I try asking if is he hurting or scared but its like he's not properly awake. Like as if he is julted awake by something. My GP doesn't listen and says its because he's a child. I've asked his consultants but they are not willing to commit themselves to the reason. I don't know if its because of his dystonia which can cause painful muscle spasms. I just want to find out why he wakes up so much. I don't believe its just because he is a child. So if anyone knows who i should ask and how you get them to listen about your childs
sleep. As its been the same since he was born and its so tiring. Jo x
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(10-16-2009, 10:47 AM)Jo+3 Wrote: My son has dystonia which causes his muscles to contract and spam. He goes to bed fine but wakes in the night. About 8 times on average. He wakes screaming which i'm not sure if he is in pain or not. He will be 3 in december. I try asking if is he hurting or scared but its like he's not properly awake. Like as if he is julted awake by something. My GP doesn't listen and says its because he's a child. I've asked his consultants but they are not willing to commit themselves to the reason. I don't know if its because of his dystonia which can cause painful muscle spasms. I just want to find out why he wakes up so much. I don't believe its just because he is a child. So if anyone knows who i should ask and how you get them to listen about your childs
sleep. As its been the same since he was born and its so tiring. Jo x

My son who is 2 and a half also is going through this stage at the moment and we are not sure if it is pain with his legs because of his condition or maybe its a fad who knows.

But we have tried giving him Calpol before bed and this seems to help which would indicate it maybe a pain issue.

Have you tried any Calpol at all or Nurofen Children version of course
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#3
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(10-16-2009, 10:47 AM)Jo+3 Wrote: My son has dystonia which causes his muscles to contract and spam. He goes to bed fine but wakes in the night. About 8 times on average. He wakes screaming which i'm not sure if he is in pain or not. He will be 3 in december. I try asking if is he hurting or scared but its like he's not properly awake. Like as if he is julted awake by something. My GP doesn't listen and says its because he's a child. I've asked his consultants but they are not willing to commit themselves to the reason. I don't know if its because of his dystonia which can cause painful muscle spasms. I just want to find out why he wakes up so much. I don't believe its just because he is a child. So if anyone knows who i should ask and how you get them to listen about your childs
sleep. As its been the same since he was born and its so tiring. Jo x

Hi jo,
your son sounds just like my daughter,she is 18 months old and wakes frequently during the night, she is inconsolable and very rigid..
The drs have taken note of this but i think till we have some diagnosis they wont to do too much. she has muscle movements that look like seizures but till it is ruled out that its not epilepsy. I dont think the peads will be willing to prescribe any sleeping meds as i understand these are not safe to use if patient is epileptic. so we will have to just carry on as is for time being wich is hard as we have 3 more children 2 at school and she wakes them too so bless them they are bleary eyed in the morning. so thats our story but now too the point Big Grin.
I think if you ask and explain how this is making things hard for you and your son they maywell give you a type of child sleeping medicen. dont think they do this freely as my friend had to insist on it for awhile (its expensive) but got the meds in the end.
Winkthey say sleep deprivation is a form of torture, and i know why!

Good luck and know your not alone, when your son wakes in the night think of me at home doing the same with my daughter.Confused
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If its muscular you could try Calbrofen maybe just to rule it out at least?
Let us know how it goes.
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(10-16-2009, 12:27 PM)Daniel Wrote:
(10-16-2009, 10:47 AM)Jo+3 Wrote: My son has dystonia which causes his muscles to contract and spam. He goes to bed fine but wakes in the night. About 8 times on average. He wakes screaming which i'm not sure if he is in pain or not. He will be 3 in december. I try asking if is he hurting or scared but its like he's not properly awake. Like as if he is julted awake by something. My GP doesn't listen and says its because he's a child. I've asked his consultants but they are not willing to commit themselves to the reason. I don't know if its because of his dystonia which can cause painful muscle spasms. I just want to find out why he wakes up so much. I don't believe its just because he is a child. So if anyone knows who i should ask and how you get them to listen about your childs
sleep. As its been the same since he was born and its so tiring. Jo x

My son who is 2 and a half also is going through this stage at the moment and we are not sure if it is pain with his legs because of his condition or maybe its a fad who knows.

But we have tried giving him Calpol before bed and this seems to help which would indicate it maybe a pain issue.

Have you tried any Calpol at all or Nurofen Children version of course

Thank you i wil try Calpol or Nurofen. Lets hope our sons are going through a phase. Its frustrating as its the not knowing why they wake up.


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