Brio seizure alarm any experience?

[whatsitdoodah]

Hi,

My 7 yo dd has BECTS (Benign Rolandic Epilepsy) and has both focal and tonic clonic seizures in her sleep. We are considering buying an epilepsy alarm to warn us when she is having a siezure, specifically we are thinking of getting the Brio.

www.epilepsyalarms.co.uk/our-products/

Does anyone have any experience of this product, or any other similar alarm system? I would really appreciated some honest reviews and or advice. At the moment our daughter is sleeping in our bedroom as we all feel anxious about her sleeping where we can't see / hear her in her own room. However this isn't really a long term solution so I'm looking for ways to manage risk and anxiety around night time siezures. I asked her epilepsy nurse what she throught to these devices and she was very non comittal and wouldn't offer an opinion either way. Any advice gratefully recieved!

Thanks.

Hi @whatsitdoodah ... did you buy the alarm? how are you finding it? we have a Sami 3 but also have mixed TC and partial seizures; wondering whether to get a HR alarm so we 'notice' the partials...

Hi, sorry for the late reponse. We bought the alarm to alert us to TC seizures. Unfortunately we didn't find it that helpful because

1. It kept going off when my daughter was not having seizures.
2. The manufacturer reccomends that you do not install updates on your phone which isn't that practical. The device did not work when we installed updates!

The Brio alarm alerts you if your childs heart rate strays outside of pre-set paramaters - i.e. it relies upon your childs heart racing when they have a seizure to alert you.

Hope that helps!

It's great to hear about real life experiences. I'm thinking about buying one of these alarms for my son as well. Can I ask, if you set a proper lower limit and a proper higher limit, does it work well to identify when the heart rate is out of norm? Or is it wacky?
I don't even know if my son's heart rate changes during a seizure - I assume it does.

I am also looking at pulsegaurd which also monitors heart rate (not motion).