Hi I am a carer for a teenager with epilepsy who keeps having seizures during the night I am worried I may not wake when he has one and I am looking into the bed alarms and the watch alarms but in just wondering how good they are as they are really expensive…would appreciate the help x
That’s horribly worrying. There are one or two folk here on the board who have experience of caring for someone with epilepsy, but not many (I have a ‘little’ experience, in that my husband with terminal brain cancer developed it at the end, but it was very ‘mild’)(ie, it was a symptom of his brain tumours, not a condition in its own right).
I take it you’ve asked on all the epilepsy support groups/forums/websites?
This is only a thought, and somewhat fanciful (!) but I don’t know whether having a ‘support dog’ would do the trick at all? It’s a bit ‘drastic’ but a trained dog sleeping in the bedroom might be able to bark when it ‘senses’ a seizure building up? (Maybe I’m optimistic about how sensitive such support dogs can be??)
If they are expensive, the alarms, is it ever possible to hire them to try them out? Or buy them second hand on E-bay perhaps??
How much warning, if anything, do you get, and how severe are the seizures?
(Do they correspond to ‘REM’ sleep, I wonder? One of the things I was told when my husband starting fitting was that I should leave him totally ‘alone’ - I shouldn’t talk or touch him. The problem was that his brain was ‘overloaded with sensory information’ and therefore me adding to that by talking and touching would NOT be helpful for him! So, if your son/daughter is having seizures while sleeping - which should be fairly ‘relaxed’! - is it therefore associated with ‘internal sensation and mental agitation’ …ie, dreaming???)
Hi, I have no idea if this is so in your area, but it might be worth contacting your local council to see if they can help supply equipment for a vulnerable person as opposed to an older person. They might have suggestions or pointers to people who can give you appropriate advice. Also possibly via occupational health? not sure how you access, via GP or council?
All the best,
Tessa
p.s. presume you have rung the epilepsy society helpline, not sure if they can help??
Full sp … Epilepsy Action … the experts in this field :
Alarms and monitors - Epilepsy Action
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What seizure alert systems are available ?
How do I choose a seizure alert system ?
Nicola,
In our area, these are ( or used to be,) provided and funded by the NHS. Does the teenager see a pediatrician? If so ask them about one. If not the school nurse, might be worth contacting. Alternatively, as the GP for a referral to occupational therapy.
Melly1