Seizure Monitors
One of the most difficult aspects of caring for child with epilepsy is the nighttime seizure. As many parents of kids with intractable epilepsy will tell you, these are terrifying, for they strike when we are least likely to be able to do anything about it. Indeed, some parents are so frightened that they sleep with the child rather than taking the risk of missing the seizure. (The fact that caregivers experience serious sleep deprivation as a consequence of these realities is a subject for another day.)
Unlike children who always seize at night, my daughter only experiences nighttime events about once a week, and these usually occur late in the morning, around 4 A.M. They happen to be the most difficult of the seizures she has, requiring intervention with Diastat (valium gel delivered rectally to interrupt a seizure), but we were pretty good at waking up when they happened because her breathing would become very raspy and loud enough to be heard on baby monitor. Recently, though, she had her tonsils and adenoids removed to treat mild apnea (a measure that we hoped would improve seizure control by improving sleep). And the surgery has been very beneficial—she sleeps very quietly and easily now. BUT, as we quickly discovered, the improvement in her airway means that when she has this seizure while sleeping, SHE IS QUIET. No more raspy breathing to wake us up over the monitor. One morning I came in to find her in the seizure and I had no idea how long it had been going. We were able to stop it, but she was absolutely exhausted all day. This was new, for she usually snaps back after sleeping off the Diastat, and led me to think that the seizure had been much longer than we would have allowed had we known it was happening.
Doctors hold out very little hope for the parent in this predicament. As yet, there are no FDA-approved seizure monitors on the market, and though some people have been able to use assistance dogs to alert when a child seizes, this is not an easy option for many families. My first instinct was to try to get a pulse oximeter from a Home Health Agency, thinking that the seizure probably causes a significant change in respiration or heart rate (she’s never had one of these while doing an EEG, of course!) and would thus alert us. But our insurance company will only cover the cost of such a device if the patient has a pulmonary diagnosis, and the monthly fee without insurance is $500.00.
So, we turned to a fairly new device, the Emfit movement monitor, made in Finland. It is not FDA approved, but is used in Europe and has one lone American distributor in Texas. They offer a rental plan ($1.50/day); this rental fee can be applied to the purchase price of $600, and they do have payment plans. The very helpful Christine Ocean manages the U. S. distribution of the device, and says that the response from parents has been overwhelmingly positive.
My major concern about this device is that it detects “micromovements,” and the seizure in question is pretty quiet—not at all the tonic-clonic movement that would be most likely to register. Still, we ordered it, and it came last week. It was very easy to install—it lies underneath the mattress and is connected to the monitoring device which sounds an alarm when movements of a pre-set frequency continue unabated for a pre-set amount of time (there are a few options that one can choose from).
Of course, as always with the Murphy’s Law of Seizures, our daughter hasn’t had a seizure in bed since we got the thing! But we will be patient. Since the seizure we worry about is very dependably coming every 7 to 8 days, I am planning to sleep in her room on the night in question to see if the monitor will register the event. I’ll report back when I know more.
But I am once again struck by the absurdity of the situation: we can send astronauts to live in space for months at a time, and program a robot to walk on Mars, but we can’t create a monitor that reliably detects seizures? The need for such a device is real—obviously it would be a great thing for protecting children and adults who suffer from seizures. But it would also allow caregivers to remain vigilant while at the same time maintaining as close to normal sleep routine for themselves as possible. And we all know how critical sleep is to maintaining health and well-being, especially for people living with chronic stress, such as that caused by parenting a child with uncontrolled seizures. I really hope that the Emfit device is the answer to this, and that the FDA and doctors can begin to take the problem to heart.
I just read about a device that detects seizures, and cessation of breathing. If you can, take a look and tell me what you think about it. Would this be helpful for your situation? I am trying to get one for my son. Here is the website address http://medpageusa.com/ST1BedMotionMonitor.html
Comment by Karen — May 6, 2009 @ 7:29 pm
I don’t know why but I didn’t see the paragraph you wrote at first about the ability of this device you ordered to be preset regarding frequency of movement. Sorry!
Comment by Karen — May 6, 2009 @ 7:32 pm
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.
Comment by Justin — May 15, 2009 @ 1:26 am
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..
Comment by Doug — August 2, 2010 @ 7:18 pm
@ 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
Comment by Jennifer — August 8, 2010 @ 11:10 pm
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
Comment by Margaret Storey — August 9, 2010 @ 8:07 pm
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
Comment by Tia — September 12, 2010 @ 4:47 pm
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?
Comment by Gail — September 21, 2010 @ 12:19 pm
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
Comment by mstorey — October 10, 2010 @ 3:48 pm
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
Comment by mstorey — October 10, 2010 @ 3:54 pm
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!
Comment by Michelle — November 3, 2010 @ 10:53 pm
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
Comment by mstorey — November 16, 2010 @ 9:18 pm