Who uses a bed alarm devise?

[RochelleJ]

Does anyone use a bed alarm devise to warn other family members not sleeping in same room that you are having a seizure? If so, please let me know where you bought it and whether or not it works and is worth buying.

[Oakley711]

Yes, the roller coaster is indescribable to those who are not riding it *smile*.  As I find myself quite emotional lately due to the constant worry that seems to be natural in the beginning stages, it is so helpful to actually be able to chat with people who REALLY know what it is like.  It brings me to tears as I read your email about shifts because there really are others out there going through the same thing!!  Our daughter's toddler bed is currently at the foot of our bed, and I find myself checking her 3-4 times a night.  My husband is a police officer who works B shift, so he is a heavy sleeper once he gets home.  Don't we, moms, always seems to be the "sleep with one eye open" types, and take the brunt of sleeplessness from birth on.  Oh well, that's the nature of the beast I guess. I too, find that my children suffer as I seem to be overly irritated due to the stress of this and work combined.

Anyways, I did check out the website that you offered.  My only thing still is the vomiting nature of my daughter's seizure onset.  The alarm system probably wouldn't alert us to that, and it has been the onset of her seizures everytime.  The convulsions come later, as she is having 2 types back-to-back.  At this point, the Tegretol has seemed to lesson the severity of the seizures, as she came out of her last seizure without the Diastat.  What a great feeling!  What a mental lifesaver it is to have the Diastat with us at all times.  

I will continue to look into the bed alarm, and I am also considering a seizure alert dog that could be trained to alert me to the vomiting.  Definitely stressful!!!

Thanks for your comments and stay in touch if possible.

~Oakley

[Nicole1111]

Oakley,

You're so right in calling it a journey.  You've probably experienced a roller coaster of emotions in the last two months you didn't think were possible.  I'm sorry you had to join this group but welcome you!

It was expensive - and shipping wasn't exactly cheap as I wanted it fast :)  But I think we spent somewhere between $275 and $400 USD in the end.  Like I said before:  if his seizures stopped without Diastat, I don't know if I'd be as attached to it!  But it has brought so much piece of mind to our family that I consider it priceless.  We were sleeping in shifts before and I was so sleep deprived that my other children were suffering.  (We started sleeping in shifts after an incident of my son seizing on my husband's chest while sleeping and my husband not waking up very quickly.)  Maybe they're cheaper now that they're more common anyways!  Good luck

Nicole

[Oakley711]

I was so excited to read your comments to RochelleJ.  I just joined this forum today and am trying to find peace of mind at night with my 4 year old.  We just started on our epilepsy journey with her, and she has been sleeping in our room since March.  The onset for her seizures has been vomiting, so I am reluctant to put her back into her own bed for fear of choking if I don't hear her.  The alert device that you spoke about seems perfect for us.  I did note the contact info. that you gave Rochelle, but what does this cost??  At this point, peace of mind is priceless, but I was curious.  Thanks!  ~Oakley711

[Nicole1111]

Rochelle,

Yes, it's definitely alerted us to his seizures.  It has a sensitivity dial and a delay dial, so you can put the sensitivity high (to detect even the slightest movement) but the delay high as well (so it won't go off until this movement has been continuing for a certain number of seconds (1-45 or so).  That way it's not going off every time he rolls over :)  

We used it in  his crib at first and were nervous to move him to a twin bed, but it detects his movements just fine under the thick twin mattress.  

We do get a few false alarms at night, but I"d prefer to have a few of these and detect the real ones than to go the other way.  We called them and emailed them - emailing seemed to work better with the time delay.  Here's their info (though it is 1.5 yrs old now):  

Easylinkuk.co.uk
MP5 convulsion monitor
Mike Dines, Owner
Telephone:  [phone]

good luck!

[RochelleJ]

Nicole,

Thank you for your response.  Do you feel that this monitor has alerted you to every seizure your son has had, with the exception of when the batteries died?  I'm just wondering how sensitive they are.  And secondly, did you order it on-line or call them.  If you called them and you happen to have their number handy, I'd appreciate it, otherwise, don't worry about it.

Thanks for you help!

Rochelle

[Nicole1111]

We use the MP5 from EasylinkUK.com (they shipped to the US for us) for our 2.5 year old son and it has really brought us peace of mind.  His seizures are often at night and don't stop on their own, so this alarm wakes us up and we give him Diastat.  If his seizures stopped without medicine I don't know that it'd be quite as much of a lifesaver, but I suppose he'd still vomit after them, so it'd be nice to know.  

Good luck!  They were fantastic to work with and even wired it with an extra sensor to detect our little guy's movements (he was only 11 months old when we bought it.)

The only downside is that the part that we keep in our room is  battery operated and it did run out of batteries one night and he had a seizure.  Luckily I woke to it over the baby monitor, but I think I slept through the first 10 minutes or so.  Maybe they've changed this so that it can be plugged in now anyways!

Nicole

[Dr Santos]

Hi RochelleJ,

How are you? There are Bed motion monitors and alarms for detection of erratic movement such as Nocturnal Epileptic Seizures found in the net. One such thing is this type:  ST1 monitor - effective for: motions such as seizures in bed , apnea, cessation of breathing, bed occupancy, detects the person. This is recommended to infants as well as adults. Another is the MP5- used for bed-motion monitoring only, such as movements found in Grand mal Seizures. (http://bedseizurealarm.com/)
The Emfit safe bed is another product that detects movement and it also has an accessory which can alert other people if the patient lives alone. (http://www.epilepsy.org.au/pdfs/EA_360_Dec_2007_p4_5.pdf)

However, the sensitivity of bed alarms according to a study Danish Epilepsy Center  is only 15-20 %. (http://www.epilepsihospitalet.dk/Portals/1/Forskning/Renes%20poster%20helsinki.pdf)

The decision will still be up to you. There are a lot of products advertised in the net or you can get in touch with your local support group to know more about the pros and cons of having these seizure monitoring systems and alarms.

I hope this helps. Take care and please do update us.