Question about night time monitoring of seizures.

Michele - posted on 02/16/2011

My son has Dravet Syndrome and has regular seizures in his sleep he is now 7, but had seizures since he was 4 months old. His seizures changed to mainly at night when he was 4 years old (this is common for dravet). We use a video link monitor, a easylink epilepsy alarm and a sats monitor to watch him. Each one on its own does not work well. The video only works if you are sat watching it 24 hours a day and yes you do need to sleep at some point, the epilepsy monitor picks up movement including if he rolls over in the night so you are getting up and down attending to him very often, and the sats monitor only picks up certain seizures mainly Tonic Clonic's or Seizures lasting over 4 mins in our case. But when we use them together it works very well as the epilespy alarm may sound so we check the video and if it looks like he has just moved we leave him, but if the sats monitor is sounding we know he is having a seizure it just means we are not running back and forth all night and we manage to get some sleep inbetween seizures. Although would love more sleep as his normal pattern is about 3 seizure a night. Good Luck with finding something that works for you.

Julie - posted on 02/11/2011

My son was diagnosed last year with BRE. I believe it is only benign if it is not your child! My son had several seizures that we witnessed and he would also twitch throughout the night. He would wake up several times every night. He was always tired and worn down. We put him on Trilepital and have noticed an improvement with his sleeping and energy level. However, we have noticed memory recall problems and an increase in headaches. I have not found any fool proof way to know when he has seizures during the night. Our doctor said that if his pillow was wet from drooling then he most likely had a seizure. It kills me to think of my son having a seizure and being alone! After reading this thread I will be checking out the sleep monitor. Good luck with your child! Remeber you are not alone!

Christine - posted on 02/11/2011

Try bells on the bed if you bend them it will mute the sound a little if you want but watch for patterns 2 seconds rolling over vs 10 seconds ringing... does she take vitamins? vitamin b is good

Terri - posted on 02/11/2011

My son wasn't diagnosed until the age of nine. The only way we knew he even had seizures was through a sleep study. Also he would infrequently wet the bed we assumed this was due to seizure activity. He never really complained and there was never an issue. Get a sleep study to see if there is a lot of activity at night, and then go from there.

Denise - posted on 01/18/2011

Just wondering Susan if you have gotten answers about your son's twitching? My daughter doing same and we go for a sleep test next week. Thanks.

Colleen - posted on 01/11/2011

Our son has seizures at night, they started when he was 3, we were told that he would probley just grow out of them but he is 12 now and they said at his age he probley wont now. I use to wake up in the middle of the night to my son standing by my bed and I always thought he was just sleep walking or had a bad dream, but after he was diagnosed with having seizures we realized that after a seizure he would wonder into our room confused. sometimes we have him sleep in our room at night so we can monitor the seizures, we did by a video monitor that records movement so we also use that. good luck.

Elaine - posted on 01/09/2011

I recommend contacting the DannyDid Foundation to support them and ask about the Emfit bed moniter. It will alarm you if there are siezures. We have one and I am so thankful for the DannyDid Foundation.

Karen - posted on 12/28/2010

I have heard of people using the baby video monitors. However we keep our son in our bed (so we can feel him move) as a precaution. The more threads I read, the more I wonder if any of the neurologists fully understand epilepsy as it seems most doctors are just guessing.

Kirsty - posted on 11/14/2008

hi natasha my daughter aged 5 was diagnosed with BRE about a year ago she has only ever had one sezure whilst been awake the rest in her sleep she is taking sodium valprate to monitor her sezures but am so scared she may be having more sezures in her sleep that am not aware of, i am in and out checking on her threw the night but obviously when she sleeps i need sleep to i wish i could stay awake all night to monitor her but its impossable,at my last visit to the hospital with her i was made aware of sudden death in epilepsy and that has made me even worse am petrafied it has changed my life around i know that this problem is not going to go away soon but how do i stop worrieng so much to the point i darent sleep. i have bought a video camara to put in her bedroom on a night so i can see in the morning if she is having any more sezures so she can be on the right amound of medicen i think that might be something you shud consider then if your daughter is having sezures she can have them controlled, i hope my post was usefull. kirsty

Dusty - posted on 11/12/2008

Hi there...my 8 year old has rolandic epilepsy, they usually happen about 20-40 minutes after she falls asleep. I have an older daughter that shares a bedroom with her and has came and got me every time they happen (other than the one I witnessed from beginning to end when she did the sleep-deprived EEG)...we put her on Tripleptal about a year ago and it works well as long as she consistently takes it (she has had two in the last year when we were seeing if she still had them if we took her off the medicine), haven't noticed any side effects either. For my entire household (mostly my 13-year old), the seizures are scary to be a witness to, so we have been grateful for her medicine. Take care, Dusty

Beth - posted on 11/11/2008

My daughter was 6 years old when she had a cluster of seizures for the first time. She was also diagnosed with BRE. It took me a long time not to sleep with her any more because for some reason I felt if I was there I could do something. We are fortunate that our daughter is very aware of her body and usually tells us if she is feeling something that may be sign of a seizure. To my knowledge she has not had anymore in her sleep but she has talked about having "jitters" during the day. I have narrowed that down to twitches that last about 10 seconds. We too did not opt for medication on the recommendation of her neurologist however if it does start to affect her socially we will revisit this option. She also jerks in her sleep which may or may not be from the seizures. I guess what we need to do is take deep breaths and know that they will most likely out grow this.

Heather - posted on 11/06/2008

Not to scare you, because it is scarey. My son now 12 has had what his first neurologist diagnosed as myoclonic jerks when he was 1 and we were told that he would grow out of them by the time he was 3 . His twitching slowed down for around 3 years and as he got older they came back and are alot worse than ever. He has had every test that they can do for him and his on plenty of meds and I am still being told that he is going to grow out of them . It is really good that your daughter has not had any seizures in a year. His usually are worse when he is tired , upset or stressed about something, if that helps you any.On top of his meds he takes fish oil, the Omega 3 fish oils are good for the brain production and develpoment and helps to control his seizures a bit ,but we have a long way to go. I do not know it that helped you any , but I hope so. I have done alot of research on this and I have a medical background so I am always looking for new ways to help my son and others that have children with this illness.

Codie - posted on 11/05/2008

I found one that actually ships to the USA! Here's the link: http://www.bedseizurealarm.com/epileptic...

Julie - posted on 11/04/2008

http://www.easylinkuk.co.uk/page5.html

you can get a sleep Monitor from the UK

im not sure if you can get them anywhere else

but if something you think might help i have added the link

Good Luck

Kerry - posted on 11/03/2008

I bought a sleep safe pillow for my daughter , it doesnt alert you but if they roll over or become face down they are able to breathe through the pillow and they will not suffocate. not a cure but allows us to relax a bit

Natasha - posted on 11/03/2008

Thank you! I really appreciate it.

Susan - posted on 11/03/2008

Hello, I do not have that answer yet, but i am in the process of asking the same questions to my son's Neuologist. He is going to set up appointments for us to hook my son up to a portable EEG so we can take it home and monitor my son's sleep at the same time when we see him twitching in his sleep we are to video tape it as well and hand it in to the doctor to. I'm affraid he might be having seizures as well in his sleep becasue he does not sleep well and twitches and fusses lots.

My son has been seizure free 95% of the time while on the Ketogenic diet, but lately they seem to be comming back (his seisures that is durring the day and maybe at night as well in his sleep.)

Will let you know how it goes after we are done.