night seizure alarm

[101Familyiseverything]

Hello, I don't know if anyone can help...

My 3 year old son has epilepsy (Tonic-Clonic). I am currently looking for an epilepsy seizure alarm system (so I can stop camping out next to his bed). My issue is there are so many to choose from and I can't find any reviews. I've been looking at the 'Pulse Companion' and 'Alert-it Companion' back and forth for goodness knows how long.

Does anyone know if these are any good, or if there is something more reliable on the market? I'm just terrified I will make the wrong decision and the device doesn't work properly.

Following.

The epilepsy nurse said to me some mats don’t work for some kids of a certain age , so I don’t know where I can start to look either! My child is 11 however.

They did suggest something like a chime on the bed but she’s so restless I doubt anyone would sleep!

I’ve used a Summer video camera for a few years, and it picked up fine when she had a creaky bed and we managed to intervene ASAP but now her new bed is quiet I hear nothing :/ panicking !!!!

Hi Uncoordinated,

My sons epileptic nurse just included the alarm in his care plan. She told me there was a lot but only a few that would suit a toddler.

It sounds like we are in the same boat, neither getting any sleep. I have a video monitor but the amount of times I've walked in to my son unconscious in vomit scared me to say the least. It wasn't until his last big seizure that I took to the floor though.

We were suggested bells (I didn't even try that, my toddler would have thought it would have been play time and not bed time).

The Pulse companion is like a watch. It goes on the wrist and checks heart activity every 8 seconds. might be useful?

I’m going to investigate! Did the nurse recommend it to you?

We’re the same, it has to be an ambulance call every time still.

It was on one of the info websites recommended by her. I think it's probably going to be what I go for. The problem is these things are so expensive and I don't mean in cash but more of a play with health and safety.

I’m really interested now in both - but the price is wild isn’t it?
It might be something Family Fund can help support with?

Hi there,
I literally never post here-but logged in to join this thread.

My boy is 8, has had focal seizures since he was 6 months. He has one most nights. We have recently got the pulse companion, the arm band one. I'm in Ireland and it cost about €800.

I like it-but don't love it. It works on the basis that you use an app to set parameters for heart rate-upper and lower. Then if the band detects heart rate out of this range for an allocated time (you can set this time too) then the alarm goes off.

Part of the problem for us is my sons seizures are short-maybe only a minute, so he won't always be seizing long enough for the heart rate to make it over the upper parameter, but if we set it much lower then we would get false alarms if he's dreaming or wiggling around. It took some trial and error for us to get it to best level.

False alarms are a problem-the band can lose contact with skin, with the Bluetooth connection or sometimes it just freezes. Also the arm band causes irritation on my sons skin-so we have to change its position. The alarm part is finicky-and a pain it the arse to reset during the night...especially after false alarms.

So there's my very mixed review-it does work, but it's not without its challenges.

I have heard very good reviews about the Apple Watch and a seizure app you pay a monthly subscription too. I think that'll be what we will try next.

Hi Polly whatshername,

Thank you for taking the time to reply. That's really helpful to know. With the apple watch I'm guessing for a toddler it might be a bit big? I will have a little look though. My sons seizures are quite long 10 mins to over 30 mins he doesn't have them every night (that must be hard for you, I can only imagine).

They are a bit pricey but if they work, it'll be worth every penny. There are a few different areas for grants depends on your circumstances. If you are worried about the price speak to your epilepsy nurse team. They can usually point you in the right direction.

Thank you for the review on the pulse companion!

If your sons seizures last that long then I'd say the pulse companion would be more suitable. Are you sure his pulse rises or falls significantly during them?
As regards the arm band-the pulse companion arm band is big too-and I haven't had any luck getting a smaller one. We actually have to put it on our lads leg because his arms are so skinny.

I hope you find some thing that gives you peace of mind!

Hi I was just wondering if you bought one as I’m looking into getting one for my daughter who focal epilepsy and has silent seizure at night and hers last a long time if unnoticed (longest was 2hrs) I stay up every night to watch her and then I get my rest during the day while my partner takes over caring for her, I’m just desperately looking for something that works?