Seizure Alarms:

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

P

purseynursey

New
Messages
20
Reaction score
0
Points
0
My daughter had 2 Grand Mals this week. Both seizures where while she was bed. I am having a terrible time with the anxiety. I have not really slept since. Has anyone ever used a seizure alarm? They are very expensive and I hate to spend the money if they are not worth it. She has been sleeping in my bed but that means my poor husband gets kicked to the couch. Im sleeping on her floor tonight. We have decided to also get a baby monit.or
 
I didn't know there were such things. You need to try and rest to be able to help her cause you need your strength. Baby monitor is a good idea.
 
Yes I see they are expensive. If you have insurance for her, maybe the insurance would pay for it, especially if your doctor says it's a necessity. I found this website that has them & they are on sale right now.

Go to (bedseizurealarm.com) & they have some there.
 
There is also one called emfit & it detects motions & such and there is even a smart watch that the person wears, looks like a regular watch and when they have a seizure it sets off an alarm & can be synced to your smart phone so when your daughter has the seizure, you'd be notified by phone if you have one of these. Both have websites to look at
 
Angel: Thanks for the info. I did see the Emfit online. I hadnt run into the watch yet though. That actually sounds like a great idea to me. I will try to find it online :)
 
If her surroundings are safe and she can't hurt her head, I think you should get the baby monitor. When I have had mine, I usually don't come all the way back for 45 minutes to where I know what I am doing. To mine and my husbands knowledge, if I have had one in my sleep, I just stay asleep afterwards. I don't know what else he could do if I have one, unless I were to get up and walk around afterwards, but generally, in my experience with kids they sleep through the night. I don't know what good it does to put them in the bed with you if they can't hit there head or climb out.
 
Cspence123 said:
If her surroundings are safe and she can't hurt her head, I think you should get the baby monitor. When I have had mine, I usually don't come all the way back for 45 minutes to where I know what I am doing. To mine and my husbands knowledge, if I have had one in my sleep, I just stay asleep afterwards. I don't know what else he could do if I have one, unless I were to get up and walk around afterwards, but generally, in my experience with kids they sleep through the night. I don't know what good it does to put them in the bed with you if they can't hit there head or climb out.
Click to expand...

It is different for kids than adults. Kids are at a greater risk for SUDEP, therefore they DO need monitoring. One could smoother during a seizure during sleep, and if it is a TC, they could hit their head. Maybe the child doesn't need to be in the same bed with the parent, but they do need constant watch, IMO.
I've had nocturnal seizures, too, and ended up with sore body the next day. I surely didn't sleep thru the night.

PurseyNursey and Angel,- here is a link to the Emfit website: http://www.emfit.com/en/care/products_care/epilepsy-monitor/
 
Thank You guys for your imput as always. I think what Im most scared of is that she could possibly seize for an hour and me not know about it causing further brain damage!! Just the idea of her seizing that long keeps me up at night. Im that Mom that would give the Diastat after 1 min instead of 5 because I could not tolerate watching her like that. Im an RN for Gods sake!!! My head knows that she isnt in any major danger from a tonic clonic but it doesnt seem to matter when it happens. I scream, cry, vomit etc. Shes only had 3 tonic clonics and each time I have called 911. I know its not necessary but it looks like my baby is dying and Im no longer a nurse but a mother scared to death!! So the alarm/monitor is more for me than her:( Im amazed how well you guys on here seem to deal with this. Im a freaking lunatic with worry.
 
I'm no RN, but I have witnessed other folks having seizures at different E functions. My kids have witnessed my seizures and have called 911, too. They told me at the time they thought I was going to die. It is scary to deal with. Being a mom is totally different than being a nurse. It's different when it happens to you or your own child.

Hang in there.
 
I know just how you feel, the not knowing kills me! Our Neurologist told me not to sleep on her floor, but I've ignored that advice until we get her medication level just right. I also worry about not knowing if she's had a t-c because I'd like to have an accurate record so we can achieve that perfect med level. Good luck to you!
 
My daughter just turned 11 & has a dx of Juvenile Myoclonic Epilepsy. She was on Keppra since the beginning of June but we've just started the process of switching to Depakota because she was has an absurd amount of absence seizures. And no underlying diagnosis really. Just brought on by puberty they said. I haven't had a decent nights sleep since June 5th : (
 
KimHen: So sorry to hear that. You really havent had much time to adjust. We have been fortunate that Nora went 6 years between Grand Mals. Our Dr thinks that puberty is playing a role in Noras "flare up" .... Has your Dr talked to you about Depo shot? From what Im reading on here the Progesterone can be helpful in dealing with seizures anyway?
 
Hi KimHen5

Our 15 year-old daughter (undiagnosed still but JME is closest) really benefits from the DEPO shot. It moderates the anxiety and the ups-and-downs through her cycle. It doesn't do anything about her (also absurd amount of) absence head-drops though. So far nothing seems to stop those. Every 15-30 seconds for 2-6 seconds throughout the day.

We had been using a patch but it was delivering Progesterone AND Estrogen and it didn't work nearly as well.
 
Hi

I dont know what medical supplies are out there in america but there is a group in australia called epilepsy action and they have loads of info and advice as to where to find medical supplies for epileptics.

One thing that has been brought to my attention is a seizure mattress that can be for people who have nocturnal seizures and its sensitive to movement during a seizure and from what i believe an alarm is sounded if a seizure is detected.

I dont know if thats any help but i wish you all the best with the hard time you are having and my thoughts are with you :)

Hugs

Stacey
 
You must log in or register to reply here.
Back
Top Bottom