Seizure Monitors – Update

mstorey — Mon, 18 May 2009 00:52:07 +0000

Hello!
Thanks, Karen & Justin, for your comments. Karen, I’m interested to hear what you have experienced with the device you suggest, above. And Justin, the jury is still out. I am about to adjust the frequency of detection in the Emfit. Josie has, since we started about a month ago, had only two seizures while in bed—neither of them the really difficult one that she usually has in sleep; under the Murphy’s Law of Seizures, they have morphed a bit, and she is currently having them from a waking state, which is better for intervention purposes, but not giving us “data” about the device. The two seizures that she did have, however, begin with a very similar posture–a tonic “pike” movement that lasts about 20-30 seconds, and that does involve some very tiny movement just from the tensing of the muscles, but does not involve shaking in a classic sense. The cluster of spasms that followed was not detectable–the spasms simply come too far apart to be recognized as seizure movement.

Nonetheless, we were disappointed that the monitor did not detect these, as it suggests it would not detect the other seizure, too. However, we are willing to give it a full trial, so will adjust to one of the two other preset options. If that doesn’t bear fruit, we will try the third. I promise to give an update at each stage.

What I can tell you is that the monitor will react to sustained movements that are more pronounced. Josie has “false alarmed” the device a number of times when stimming (she likes to shake her fist rythmically), and this motion certainly mimics a more typical tonic-clonic seizure. I think that the device is very promising for many people with epilepsy.

More soon!

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Seizure Monitors – Update