ADVERTISEMENT
ADVERTISEMENT
onemarvy

Epileptic Seizure Monitor Alarm System

Hello everyone,

Our daughter's seizure have been occurring during the time when she first falls asleep (she's had 2 and they both happened during that time.)  Since she had her first one (August '07), she has been sleeping with us in our room and her just-decorated-cute room has not been utilized since. 

My husband has been researching seizure monitors and found this:

http://www.medpage-ltd.com/page65.html

Has anyone out there used this or something similar?  If so, how effective are they and would anyone recommend it or be against it?  Any thoughts or opinions are greatly appreciated!

~Marvy

Comments

Re: Epileptic Seizure Monitor Alarm System

I am also looking for some type of monitoring device for seizures.  My 12 year old daughter has seizures when she goes to sleep, generally within 30 minutes and they are not always tonic clonic. 

I have information from EMFIT, they provide bed monitoring solutions, go to www.emfit.com for more info.  I also have info from a company called Sensorium, their website is www.sensorium.co.uk

 

Re: Epileptic Seizure Monitor Alarm System

We have used the EasyLink alarm for over 2 years for our son.

it works very well.

He has 2-3 tonic-clonic per week - mostly at night.

it was not FDA or UL listed at the time, i'm talking with them now about this.

bill.scott@nwlifts.com

 

Re: Epileptic Seizure Monitor Alarm System

My 4yo son has seizures in his sleep as well.  We got a baby camera/monitor set that works great. I love it. I can see and hear him perfect so its really easy to check on him.... but should I fall asleep I could still miss the seizure.

 our nero-doc said not to buy an alarm system because they cause so many false alarms the whole family is up for a month and then the thing gets tossed in the closet.

 I would like to hear more about the EasyLink alarm as well as any other tips to help me sleep instead of staring at the camera or letting him sleep in our room.

 

Thanks!  Karen -Tylers mom

Re: Epileptic Seizure Monitor Alarm System

Hi Karen.  I was wondering what type of Baby Camara/ Monitor you have.  My daughter is 10 and has seizures in her sleep also.  I have an older camara thats about 3 years and jumps around and is not too clear and thinking their has to be better technology now.  I want to invest in a new camara monitor but not sure what to get .  I do like the ones with the bigger screens.

Thanks, Beth - Audra's mom

Re: Epileptic Seizure Monitor Alarm System

We were able to get this tied into our regular security alarm system and be notified by text message and or phone call.

Re: Epileptic Seizure Monitor Alarm System

I am curious if you have used this alarm system and how well it works.  My daughter is 10 and weighs about 77lbs .  Any info is appreciated.  Thank you.

Re: Epileptic Seizure Monitor Alarm System

My daughters pediatrician and Pediatric Neurologist recommended a regular baby monitor.  I was very skeptical ( a baby monitor for my 13 year old?!)

I will have to say, I can hear EVERYTHING, through that monitor.  I can even hear the cars passing on the street outside her window, and the dog snoring under her bed!

I'm sure you have already been given this suggestion, but just my 2 cents.

Lisa - Kates mom

 

k

 

Re: Epileptic Seizure Monitor Alarm System

hey everyone,

i am new at this blog, but it feels strange to know that you have the same problems as i do.

i have a daughter with seizures that only occur at night, and i am looking also for an option to put in her room, so maybe i can get some sleep. instead of watching over her all night and me dosing off and on, does anyone have any suggestions???

Re: Epileptic Seizure Monitor Alarm System

 hi 

 my friend had the same thing she said she went to a site call easylinkuk.co.uk and they had a monitor that would pick up seizures and would alert her. she now gets a good night sleep and doesnt worry all night. the monitor was call an mp5.she said the staff were well trained and very helpful and understanding.  i hope i helped you

Re: Epileptic Seizure Monitor Alarm System

You can buy an Epilepsy Seizure Alarm Monitor from http://www.giantbiosensor.com/MP5.html. It's also sold on Amazon and ebay for the same price of US$330.00 and includes free shipping.

Re: Epileptic Seizure Monitor Alarm System

A patient monitoring system for the real-time detection of epileptic seizures suffered by a user of the monitoring system. The system comprises control means for receiving measuring signals and, conditional upon the measuring signals, generating an alarm signal, at least one hart rate sensor for measuring the heart rate of the user and, subject to the measurement, generating a heart rate signal, and at least one muscular tension sensor for measuring the change and the intensity of the contraction of at least one muscle of the user and, subject to the measurement, generating a muscle contraction signal. In all the above cases there is the risk of false alarms or of failing to detect epileptic seizures altogether. It has been shown that when the system is insufficiently reliable, generating many false alarms, the alertness of the attending personnel also declines. This may result in an alarm signal failing to procure quite the appropriate reaction, so that such a system affords the person to be monitored a false security.

Re: Epileptic Seizure Monitor Alarm System

My daughter's heart rate escalates to out of normal ranges early in her seizures. At the hospital (frequent) she is always on a pulse oximeter that detects her heart rate, her oxygen level in her blood and alarms if the heart rate is too high or too low. I thought how much more secure I was sleeping in the hospital knowing the alarm would wake me if she had a seizure. The good thing about a pulse oximeter, if your child's heart rate is affected by seizures like mine, is you don't get an alarm for movement, but for high or low heart rates.

I asked her neuro for a prescription for a pulse oximeter at home, and the insurance paid for it. IT works very well for us. I was her "seizure alarm" for 5 years. If the pulse oximeter goes off, we respond without fail. Only a couple times has it been a false alarm: once when the tape came off in her sock, and once when the wire had to be replaced. (The wires are good for a couple nights usually.) The insurance also covers a monthly supply of the wires... The heart rate limits are easily set by us, so there is not a high number of alarms caused by her just moving around, waking up, etc.

 This would only work if the person's heartrate is affected by their seizures.

Re: Epileptic Seizure Monitor Alarm System

Hi all,

 

Our 11 year old son was diagnosed with BRE last summer.  We purchased a baby monitor and it works well.  We can hear his unusual breathing when he is having a seizure, and can be with him until the seizure is over.  Are any of you medicating your children for BRE?

Re: Epileptic Seizure Monitor Alarm System

Hi there,

A baby monitor is not the answer. My wife and I used a baby monitor and our son would have seizures that we couldnt hear. We purchased a monitor because we knew most of his seizures were happening at night. He would often wake up in the morning after wetting the bed and be very dissoriented or lethargic. In October of 2009 he had a seizure that we did hear and we were able to be with him. It happened at 2:00 a.m and after we cleaned him up from wetting the bed and making sure everything was all right we all went back to sleep. We went back to sleep at approx. 5:30 a.m. Between the hours of 5:30 and 8:00 a.m., he had another seizure and stopped breathing. We did not hear it with a baby monitor or being in the room next to him. Our son was 13 years old, and was wanting to be more independant as teenagers will do. We never let him sleep with his door shut and made him keep the baby monitor on no matter how much he fought it. It has been 6 months since he passed away from what the doctors called SUDEP.

There isn't a day that goes by when we wonder if having a different monitor system would have helped. If there is ever any doubt that you can hear him, find a better monitor system.

 I wish you and your family all the best.

Re: Epileptic Seizure Monitor Alarm System

I wish the doctors had told us about alarms and monitors, my daughter also passed away from SUDEP at age 23 on july 17, 2011. How do you get thru evedyday? Not one doctor even told us that death was a posibility. I cant get past the anger of such a senseless death. I advise doing a lot of research before tragedy hits

Re: Epileptic Seizure Monitor Alarm System

I wish the doctors had told us about alarms and monitors, my daughter also passed away from SUDEP at age 23 on july 17, 2011. How do you get thru evedyday? Not one doctor even told us that death was a posibility. I cant get past the anger of such a senseless death. I advise doing a lot of research before tragedy hits

Re: Epileptic Seizure Monitor Alarm System

My worst fear.

Re: Epileptic Seizure Monitor Alarm System

I am very sorry to hear that and feel so bad for you and anyone else that has happened to. My daughter developed epilepsy when she was 2 years old and now she is almost 5 years old. She has been in bed with my husband and I every night because she vomits almost every time she seizes and it's always when she is sleeping. I have a video monitor that I use when she is napping, but I always felt that I wouldn't be ble to hear her having a seizure in the middle of the night and I certainly couldn't see her in the monitor because I would be sleeping, therefor she has been in our bed ever since. I was wondering if a seizure mat on her bed would work for her and that's how I came acroos this site and your post. Again, I am very sorry and wish you the best.

Re: Epileptic Seizure Monitor Alarm System

hnh1384~ Does your daughter have movement with her seizures while sleeping? The emfit monitor is a good nocturnal monitor- www.emfit.com (also on Facebook). In the UK the unit is called a Seizure Monitor, the same unit is called a movement monitor in the US because it doesn't have FDA approval to be labeled as a medical device. They have been doing clinical testing with it in hospital settings though in hopes of getting FDA approval in the future. Contact Christine at Emfit, she can answer all your questions, if you mention The Danny Did Foundation (www.dannydid.com also on Facebook) the foundation receives a donation from the purchase. The monitor is not covered by insurance but the company offers a payment plan. The Danny Did Foundation and The Chelsea Hutchison Foundation (www.chelseahutchisonfoundation.org also on facebook) both will help families get an emfit that have financial need. These foundations were both started by parents who lost a child to SUDEP. Wishing you and your family the best. peace~

Re: Epileptic Seizure Monitor Alarm System

I really wish I could add this system to my current alarm system. I have an adt security system at the moment and I never have to worry about someone getting in my home, but sometimes when im not home and my son is I am worried about him having a seizure. It would be a great deal of relief to know he is safe.

Thanks for the great Post !

Re: Epileptic Seizure Monitor Alarm System

Hello,

 

How I can make a simple alarm system? Common objects are homeless. Something I could use in my room when I'm not there ... Because some people are curious, they coexist. Is there any way to make one?

Regards

Re: Epileptic Seizure Monitor Alarm System

Hello,

There is a magnetic alarm system in my door and let me know how I can go without triggering the door. And left the magnet attached to the door itself and the cut in two.This alarm system well alert for everyone...Its alert us if anyone come to our home,it producealarm sound...veryattractive post...

 

Thanks,

Rom

Cloud Computing

Re: Epileptic Seizure Monitor Alarm System

I think a high quality baby monitor with camera can effectively keep watch on every movement of the baby,such as this is also very good:

http://www.espow.com/wholesale-security-baby-monitor.html

 

Re: Epileptic Seizure Monitor Alarm System

I know that saving a life trumps modesty and privacy, but don't you think such a baby monitor would be a problem for an older child.  I know this is a special case, but I don't think anyone would want to be monitored that closely.  What do you do about that?

Re: Epileptic Seizure Monitor Alarm System

My 13 year old handles it.  Its only while she is actually asleep, and she understands that if we don't have it that I stay awake all night any way.  She just rolls her eyes at the monitor and is more concerned about the mandated 8PM-9PM bedtime. 

Re: Epileptic Seizure Monitor Alarm System

Hi my daughter is also 13!  And has seizures if she's been up too long or had too little sleep.  Thinking of a monitor, I hate sleeping with her as she sleeps very fitfully and steals the covers all  night.

You just answered my question before I could ask it!  Figured she'd hate the idea but I can handle (more) teen-aged eye rolling!

 I'd love to sleep with my husband sometime (except for the snoring).

 

Kate

Re: Epileptic Seizure Monitor Alarm System

I was curious what baby monitor you have with the camara.  I have one from 3 years ago but don't feel the quality is great.  I really want to invest in something that works and doesn't jump around and is clear.  Any feedback on the site you reccomended or one that you use would be helpful.  Thanks

Re: Epileptic Seizure Monitor Alarm System

Hello,

My daughter (3 yo) has seizures at night, where her movementsare very very light, or she even become 'soft' and may not move at all during them. We should look closely at here to detect if they happen.

That's why most alarm system won't work in our case.

I found 'Aremco Multifunction monitor' here http://my.epilepsy.com/group_discussion/989000, which has plenty of different sensors (more than others). Had anybody used it or heard of how to find it? Looks like google doesn't know this company and I cannot find where to buy it. Hope they still are doing the device.

Be healthy!

Sasha

Re: Epileptic Seizure Monitor Alarm System

My 6 year old son started having seizures a few years ago and the majority of them happen while he is asleep.  We ordered the Emfit Movement Monitor the website is http://www.emfit.com/en/care/products_care/movement-monitor/ .  We got it about 2 years ago, and it has picked up numerous seizures. We have gotten a few false alarms, but if you set the sensitivity just right you shouldn't get many.   It cost about $500, but my husband and I believe it was worth every penny.  We sleep so much better knowing the alarm will sound if he has a seizure!  We also have a Summer Video Monitor in our sons room.  The static is annoying but the 7inch screen is awesome, we can see his face perfectly.  Hope this was helpful.

Re: Epileptic Seizure Monitor Alarm System

I've been using a baby monitor for my 13 year old.  She has seizures usually between 7AM and 8AM once or twice a month. I was previously just straining to hear her in the other room all night.  I CANNOT sleep with her in my room I hear her every grunt, twitch or breath. The monitor is voice activated.  I've only been using it for 2 weeks and of course during those two weeks she hasn't had a seizure (that I know of).  Its more cost effective than an official seizure monitor (at $35) and I do sleep a little better, I guess the real test will be when one happens if I hear it over the monitor or with my own straining ears.