Comments on: Seizure Monitors http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/ Just another American Epilepsy Outreach Foundation Blogs weblog Wed, 17 Nov 2010 02:18:13 -0700 hourly 1 http://wordpress.org/?v=3.1 By: mstorey http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-215 mstorey Wed, 17 Nov 2010 02:18:13 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-215 Hello, Michelle, I don't have any personal experience about this, but I did a little research at Epilepsy.com. They only had one recommendation that might be worth exploring, the Medscope Medical Alert System: http://www.medscope.org/. This appears to be a service that you pay for, but that would alert you should something happen when someone is home alone. The trick here is that one has to be alert enough to activate the wrist-band device, which might be a problem depending on the nature of your mother's seizures. I wonder if you have read the other posts here about seizure alert dogs. This might really be the trick for your family--dogs can be trained to respond in the event of an emergency, even if they do not naturally anticipate seizures before they happen. Here is a link to one of the more well-known trainers of seizure response dogs: http://www.epilepsyadvocate.com/resources/seizure-response-dogs.aspx?src=UCB-VMP-CNS-GOO-2010-0-PS-0&utm_source=Google&utm_medium=Paid%20Search&utm_term=seizure%20response%20dogs&utm_content=Canine%20Assistance&utm_campaign=VMP. The dogs are expensive, and they can be hard to get, but it may really be worth it for the peace of mind. Good luck! Margaret Hello, Michelle,
I don’t have any personal experience about this, but I did a little research at Epilepsy.com. They only had one recommendation that might be worth exploring, the Medscope Medical Alert System: http://www.medscope.org/. This appears to be a service that you pay for, but that would alert you should something happen when someone is home alone. The trick here is that one has to be alert enough to activate the wrist-band device, which might be a problem depending on the nature of your mother’s seizures.

I wonder if you have read the other posts here about seizure alert dogs. This might really be the trick for your family–dogs can be trained to respond in the event of an emergency, even if they do not naturally anticipate seizures before they happen. Here is a link to one of the more well-known trainers of seizure response dogs: http://www.epilepsyadvocate.com/resources/seizure-response-dogs.aspx?src=UCB-VMP-CNS-GOO-2010-0-PS-0&utm_source=Google&utm_medium=Paid%20Search&utm_term=seizure%20response%20dogs&utm_content=Canine%20Assistance&utm_campaign=VMP. The dogs are expensive, and they can be hard to get, but it may really be worth it for the peace of mind.

Good luck!
Margaret

]]> By: Michelle http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-214 Michelle Thu, 04 Nov 2010 03:53:07 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-214 Hello, My mom has had epilepsy all her life and nothing ever works to control them. Now that all the kids are out of the house, my dad is worried when he leaves for work that she may have one while nobody is home. Is there any type of alarm that can detect him or a phone if she falls or is having a seizure? Every alarm I have found is only for beds, that's not what we need... Any info greatly appreciated! Thanks! Hello,
My mom has had epilepsy all her life and nothing ever works to control them. Now that all the kids are out of the house, my dad is worried when he leaves for work that she may have one while nobody is home. Is there any type of alarm that can detect him or a phone if she falls or is having a seizure? Every alarm I have found is only for beds, that’s not what we need…

Any info greatly appreciated!
Thanks!

]]> By: mstorey http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-213 mstorey Sun, 10 Oct 2010 20:54:04 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-213 Hey, Tia, We have been very interested in a seizure dog, but have never tried it because our daughter has a mild dog allergy. I just shared this link with Gail, above, in re the service animal story in Epilepsy.com: http://www.epilepsy.com/group/973269 . I'm sure you've already done some of this research, but if not, this is a good overview. I am struck that Gail's idea about a moisture sensor might also be something worth looking into for you and your family. I don't know if such things exist, but perhaps Gail and you could work together to pursue this avenue, too? The situation you are in is very difficult, and I know that it must be putting extreme pressure on your marriage. It would be, of course, ideal to have her in her own bed. My only other suggestion would be to contact your neuro about what kind of O2 monitors you might be able to get via insurance or state aid. I think that these are generally not provided unless a person is on oxygen, but if she regularly vomits in her sleep, might this be a medical reason to have her wear a pulse oxymeter in the night--as aspiration during the seizure must be a risk? Please keep us up to date on how you proceed--if either you or Gail find new monitors that would be suitable, it would be great to know. As I said below, Josie's seizures are just not detectable by the EMFIT, so I know how worrisome this is. Take care and good luck, Margaret Hey, Tia,
We have been very interested in a seizure dog, but have never tried it because our daughter has a mild dog allergy. I just shared this link with Gail, above, in re the service animal story in Epilepsy.com: http://www.epilepsy.com/group/973269 . I’m sure you’ve already done some of this research, but if not, this is a good overview.

I am struck that Gail’s idea about a moisture sensor might also be something worth looking into for you and your family. I don’t know if such things exist, but perhaps Gail and you could work together to pursue this avenue, too?

The situation you are in is very difficult, and I know that it must be putting extreme pressure on your marriage. It would be, of course, ideal to have her in her own bed. My only other suggestion would be to contact your neuro about what kind of O2 monitors you might be able to get via insurance or state aid. I think that these are generally not provided unless a person is on oxygen, but if she regularly vomits in her sleep, might this be a medical reason to have her wear a pulse oxymeter in the night–as aspiration during the seizure must be a risk?

Please keep us up to date on how you proceed–if either you or Gail find new monitors that would be suitable, it would be great to know. As I said below, Josie’s seizures are just not detectable by the EMFIT, so I know how worrisome this is.

Take care and good luck,
Margaret

]]> By: mstorey http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-212 mstorey Sun, 10 Oct 2010 20:48:07 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-212 Hi, Gail, I have never heard of a moisture-sensor being used this way, but I think it's a great thing to consider. Another issue raised by Tia, below, is a seizure dog, or a dog that alerts to certain behaviors in the child. I would think that a support animal could be trained to alert to vomiting, for instance--perhaps that is another avenue to pursue. Here is the link I am going to share with Tia, too: http://www.epilepsy.com/group/973269 . It's a good overview of service animals from Epilepsy.Com. Also, for what it's worth, I know that the Emfit company is very happy to talk to parents on the phone--there appears to only be one American rep, and you can contact her by calling the US number at this site: http://www.emfit.com/en/care/contact-us/. Maybe they would have some suggestions or other information that might be helpful... Good luck! Margaret Hi, Gail,
I have never heard of a moisture-sensor being used this way, but I think it’s a great thing to consider. Another issue raised by Tia, below, is a seizure dog, or a dog that alerts to certain behaviors in the child. I would think that a support animal could be trained to alert to vomiting, for instance–perhaps that is another avenue to pursue. Here is the link I am going to share with Tia, too: http://www.epilepsy.com/group/973269 . It’s a good overview of service animals from Epilepsy.Com.

Also, for what it’s worth, I know that the Emfit company is very happy to talk to parents on the phone–there appears to only be one American rep, and you can contact her by calling the US number at this site: http://www.emfit.com/en/care/contact-us/. Maybe they would have some suggestions or other information that might be helpful…

Good luck!
Margaret

]]> By: Gail http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-211 Gail Tue, 21 Sep 2010 17:19:46 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-211 my daughter has nighttime seizures from a prenatal brain injury. Her seizures are nonconvulsive so I don't think a motion monitor would help. She just has twitching in her left hand and she vomits a lot. I'm wondering if maybe a moisture/bed wetting monitor may work. Have you heard about using this? my daughter has nighttime seizures from a prenatal brain injury. Her seizures are nonconvulsive so I don’t think a motion monitor would help. She just has twitching in her left hand and she vomits a lot. I’m wondering if maybe a moisture/bed wetting monitor may work. Have you heard about using this?

]]> By: Tia http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-210 Tia Sun, 12 Sep 2010 21:47:31 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-210 Hi all, I am curious if anyone else has had pos/neg luck with the Emfit or a seizure dog. My 7 year old daughter who is only 39lbs has various types of seizures. Usually they are quiet. She has been sleeping with me for 3 years and I recently put her in a bed in my room so my husband could return to our bed and I could try to sleep. You all know how the exhaustion feels. Anyway, I woke to a cough sound of her vomiting during a seizure, movements were small, lots of drooling. It took 2 rounds of Versed and I really thought we might need more intervention. I guess I would say I think maybe this was going on a while before I knew. It took 20 min. to get it stopped. Usually, I can get it stopped in 5-10 min. I think for the sake of my sleep an marriage she needs to sleep in her own bed but I'm concerned. Any thoughts on anything that has helped anyone? Tia Hi all,
I am curious if anyone else has had pos/neg luck with the Emfit or a seizure dog. My 7 year old daughter who is only 39lbs has various types of seizures. Usually they are quiet. She has been sleeping with me for 3 years and I recently put her in a bed in my room so my husband could return to our bed and I could try to sleep. You all know how the exhaustion feels. Anyway, I woke to a cough sound of her vomiting during a seizure, movements were small, lots of drooling. It took 2 rounds of Versed and I really thought we might need more intervention. I guess I would say I think maybe this was going on a while before I knew. It took 20 min. to get it stopped. Usually, I can get it stopped in 5-10 min. I think for the sake of my sleep an marriage she needs to sleep in her own bed but I’m concerned. Any thoughts on anything that has helped anyone?

Tia

]]> By: Margaret Storey http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-209 Margaret Storey Tue, 10 Aug 2010 01:07:53 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-209 Hi, Doug, Thanks for posting, and my apologies for the delay in replying---Contrary to your experience, the monitor never caught one of our daughter's seizures, but it is wonderful to hear that you are having success. What is the cause of your daughter's seizures? My little girl has Aicardi Syndrome, and her seizures are a form of spasms.... Feel free to email me directly at margaret.storey@mac.com. Margaret Hi, Doug,
Thanks for posting, and my apologies for the delay in replying—Contrary to your experience, the monitor never caught one of our daughter’s seizures, but it is wonderful to hear that you are having success. What is the cause of your daughter’s seizures? My little girl has Aicardi Syndrome, and her seizures are a form of spasms…. Feel free to email me directly at margaret.storey@mac.com.

Margaret

]]> By: Jennifer http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-208 Jennifer Mon, 09 Aug 2010 04:10:41 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-208 @ Doug (August 2, 2010 @ 7:18pm) Is the type of seizures your daughter is having the "QUIET" ones that are in this story? How does the monitor pick up these?? Our 4yr old daughter was just DX with BRE and we are struggling with how to monitor her, we are currently looking into a seizure alert dog but would like a back up. Thanks @ Doug (August 2, 2010 @ 7:18pm) Is the type of seizures your daughter is having the “QUIET” ones that are in this story? How does the monitor pick up these?? Our 4yr old daughter was just DX with BRE and we are struggling with how to monitor her, we are currently looking into a seizure alert dog but would like a back up. Thanks

]]> By: Doug http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-207 Doug Tue, 03 Aug 2010 02:18:33 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-207 Hello, i purchased one of these units about a year ago and i dont know what i did without it before... It has caught every seizure and my daughter only has these at nights as well.. It sounds like our children have the same type of seizures so i would love to get in contact to compare notes.. Hello, i purchased one of these units about a year ago and i dont know what i did without it before… It has caught every seizure and my daughter only has these at nights as well.. It sounds like our children have the same type of seizures so i would love to get in contact to compare notes..

]]> By: Justin http://epilepsyoutreach.org/blogs/freeyourmind/2009/04/14/seizure-monitors/comment-page-1/#comment-166 Justin Fri, 15 May 2009 08:26:33 +0000 http://epilepsyoutreach.org/blogs/freeyourmind/?p=34#comment-166 It's been a month since the date of your post. I was very curious to know if your daughter has had a seizure yet and how the Emfit monitor worked. I have been researching a couple of different monitors for the last few days and unfortunately there is not much information out there. It sounds like my daughter and yours have very similar types of seizures and I would be very curious to hear a follow up to this post so I can purchase one of these. It’s been a month since the date of your post. I was very curious to know if your daughter has had a seizure yet and how the Emfit monitor worked. I have been researching a couple of different monitors for the last few days and unfortunately there is not much information out there. It sounds like my daughter and yours have very similar types of seizures and I would be very curious to hear a follow up to this post so I can purchase one of these.

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