#1
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Hi
worried mum here, my daughter used to have, as a toddler, generlised tonic clonic siezures, sometimes bad enough to hospitalise her for several days. Much to our relief she grew out of these, how ever now (after 4 siezure free years) she has been diagnosed with a totally unrelated and rare form of epilepsy known as jeavons syndrome, at the moment that consists of many many 'absence' type seizures a day but according to the small amount of literature available, generalized seizures are very likely.... obviously after living through the terror of massive fits in the past we are hardly sleeping and we can not go one like this, so I was wondering if a seizure monitor would be advisable and if so which ones are the best ?

thank you and sorry for the long first post

Julia
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Hi Julia,

There are several epilepsy monitors available and you can view them here on Living made easy. These monitor movement, sound and/or your daughter's vital signs, such as her heart rate and breathing pattern whilst she is in bed to detect if she experiences an epileptic seizure. The sensors are placed either underneath the mattress or underneath the bed sheet (depending on model).

I would definitely recommend speaking to the suppliers to make sure that the type of monitor you choose is suitable for the type of seizures your daughter is having (e.g. some are designed only to detect the convulsive stage of seizures).
I'm not able to comment on which monitor is best, but we have built into Living made easy the ability to review products... so if you do end up using one it would be great if you could review it to help other parents/users.

Also, it may be worth speaking to your local occupational therapist to see if a monitor can be funded by your local authority.

Best of luck with it, I hope you find something suitable soon to help ease your worry & help you sleep.
Emily,
DLF Occupational Therapist.
#3
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Hello have you tried the MUIR website type this name into google they are FREE to children etc who suffer with epilepsy and you can ask for advice, do check the website out. Good luck. peace of mind.

xxxAngel
(07-12-2010, 08:01 PM)Diane Wrote: Hello have you tried the MUIR website type this name into google they are FREE to children etc who suffer with epilepsy and you can ask for advice, do check the website out. Good luck. peace of mind.

xxxAngel

http://www.muirmaxwelltrust.com just checked out website for you.
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(07-12-2010, 08:01 PM)Diane Wrote: Hello have you tried the MUIR website type this name into google they are FREE to children etc who suffer with epilepsy and you can ask for advice, do check the website out. Good luck. peace of mind.

xxxAngel
(07-12-2010, 08:01 PM)Diane Wrote: Hello have you tried the MUIR website type this name into google they are FREE to children etc who suffer with epilepsy and you can ask for advice, do check the website out. Good luck. peace of mind.

xxxAngel

.

thank you so much I am crying with relief !!!!!
Heart


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