#11
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Just also wanted to say that going on the worse day/night situation is not advised as its not a wholly reflective picture of true needs.
It needs to be based on your average night.
Going on your worse possible night could mean there is longer term trouble Confused

Just wanted to clarify you mention you check on your child every 20 minutes but they wake after 3 hours what causes the pain after 3 hours?
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#12
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He wakes after a few hours we asume coz he is sore coz of the position he sleeps in. He is completely dependant on us day and night. As well as hypotonia he also has severe learning difficulties. He can't walk or talk and never will. He cant do anything 4 himself. He's 3 but has mental and physical abitily of an 8 month old
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#13
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Put in for it again , my son is the same as your's and as i said he got the high rate again , as he cant talk and never will and cant walk but is trying to pull himself up on sofa , even if he walks he'll never walk normal due to the hypotonia and hypermobility . Really hope he gets it xxx
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#14
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I would certainly appeal. We get the high rate as my son needs care day and night. One thing my son needs at night is repositioning. I identified that his repositioning was to help prevent long term affects on his posture and my son also struggles with secretions which can sometimes wake him and is another reason for repositioning.


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