#6
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My son used to have night terrors. He would be screaming and inconsolable and stiff. It would happen around the same time every night and he was about 3 years old at the time it started. He was totally unaware of all this too. They have worn off but he does get them every now and then. He has had a few lately as he has an acute anxiety about robbers being in our house at the moment. I used to sleep walk and make sandwiches and leave them under bins (weird) and my sons Dad said that I got out of bed and went out to the car one night and I didn't remember doing it!!

Have a look

http://www.circlecity.co.uk/sleepdesk/nightterrors.php

Hope that may help. x
#7
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To Starlights
Hi i'm sorry to hear about your daughter. My son to goes very rigid and is hard to console. Its just so hard. I have 2 other children one is at school and the other is 13 months. The dr's don't seem to listen. I don't want them to give him medication to help him sleep. I'd like them to find out why. They don't even listen to me. You go in to see the consultants with all these questions half the time they dont get answered or your mind gets over loaded with all the medical terms. I dont know how you feel but its so frustrating. I hope you get a diagnosis soon for your little one. Then there maybe a medication which helps her condition. Are they any closer to a diagnosis?
(10-16-2009, 10:24 PM)loulou Wrote: My son used to have night terrors. He would be screaming and inconsolable and stiff. It would happen around the same time every night and he was about 3 years old at the time it started. He was totally unaware of all this too. They have worn off but he does get them every now and then. He has had a few lately as he has an acute anxiety about robbers being in our house at the moment. I used to sleep walk and make sandwiches and leave them under bins (weird) and my sons Dad said that I got out of bed and went out to the car one night and I didn't remember doing it!!

Have a look

http://www.circlecity.co.uk/sleepdesk/nightterrors.php

Hope that may help. x

Hi, thanks for your reply. I'll check that out. My sons dad used to walk in his sleep when he was a little boy. Its so nice to get some answers for a change. x
#8
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Hi, our son is inconsolable when he has his 'episodes'. I just have to sit and watch him until he decides to stop. Sometimes they last seconds, othertimes it can be 10mintues and he's still going. I also have a 7 year old but she seems to be dead to the world, nothing ever really wakes her!! (which is good because of school). Sometimes the calpol works, other times it doesn't. We have just been told that he has a mass of calcium on his one hip that could be causing him pain so it does make you wonder. Other times he talks about things (even though he appears to be sleeping) which tells me it's not pain and is a bad dream, he shouts 'no no' or other random things like 'tato' which is his word for potato (his favourite food).

I have mentioned his sleep problems at his last child development check last wednesday, they said they will compile a full report and send it to me so I will wait and see what their conclusion is!!!

Lucy xx
#9
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[quote='Jo+3' pid='283' dateline='1255733234']
To Starlights
Hi i'm sorry to hear about your daughter. My son to goes very rigid and is hard to console. Its just so hard. I have 2 other children one is at school and the other is 13 months. The dr's don't seem to listen. I don't want them to give him medication to help him sleep. I'd like them to find out why. They don't even listen to me. You go in to see the consultants with all these questions half the time they dont get answered or your mind gets over loaded with all the medical terms. I dont know how you feel but its so frustrating. I hope you get a diagnosis soon for your little one. Then there maybe a medication which helps her condition. Are they any closer to a diagnosis?

HI jo+3
Yes i feel the same completly, I often feel that we are getting fobbd off and its just another symptom to the drs. Is it possible that His dystonia is the cause of this? my daughter has the opposit problem she has hypotonia so although she is unable to walk she can stand supported and if she stands alot during the day that is when she will have a particully bad night. Her hypotonia is just a symptom to whatever diagnosis she will get. she has had some tests with various outcomes so has been referred to a neuro for an opinon as to whats wrong.
Our paediatrican was orriginally putting it down to night terrors but my eldest has these and its not the same. i can see my eldest is frightend whereas my youngest is in pain. she often crys during the day too and rubbs her legs vigerously so i guess that is where her pain stems from?
do you have a diagnosis? im guessing dystonia is a symtom of something else for your son?. you are right it is so frustrating i just want a name to whats happening. but it is easier knowing others are going through simmiler to us..its hard as people in realife just find it so hard to understand.
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#10
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hi Starlights,
They have diagnosed him with early on-set primary Dystonia. It can be progressive but we do not know if it is yet. At the moment it is worse in his right leg which makes it twist and turn in. They are still doing other tests. He's had loads done already. We're waiting for him to have a Lumber Puncture at the moment.

I think his sleep is linked to his dystonia but when i ask the doctors they deny it or do not want to commit themselves. I know he gets pain with it. It also makes him tired. The more physical he is in the day the worse his sleep is. The last two days we've stayed in as my youngest has been unwell so he has not done anything physical. The amount he has woken up in the night has halved.

Keep me posted on how your little one is doing. Its difficult when you have so many hospital appointments. It can be so stressfull.

Jo x


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