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Epileptic Seizure Monitor Alarm System

Tue, 02/19/2008 - 01:46

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

Submitted by maes mom on Wed, 2009-06-10 - 18:00

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.

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

Submitted by bsymko on Mon, 2010-03-01 - 14:39

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?

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

Submitted by mighk on Wed, 2010-04-07 - 14:23

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.

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.

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