Epilepsy Foundation

Hello, 

Our daughter, Sareena has Kabuki Syndrome and part of her "symptoms" is epilepsy.  She has nocternal seizures and has had one Grand Mal seizure, which was the scariest moment of our life.  She is doing well on Lamotrigne, generic Lamictal.  Her EEG's are still completely abnormal even with the medication so we are always on alert.  She has been sleeping in a crib with the Angel Care infant monitor which alarms when there is no breathing.  Although this device is not "epilepsy approved" it has brought a bit of comfort during bedtime.  She is however, getting bigger.  I have been looking at the Emfit seizure monitor.  It goes under the mattress just like the infant monitor.  Has anyone used the Emfit?  Does anyone have any tricks to help with the anxiety of sleeping, like what if "I miss the big seizure" sort of fear?  When we first got diagnosed I slept with one eye open.  If Sareena moved I woke up but after so many years now, I can't physically do it anymore, now hence the insomnia.   I'm also looking at suffocation free pillows?  Any brands you can suggest?  Are there special blankets?  Any in site would be helpful. 

Fondly, 

Leanna 

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Replies to This Discussion

Hi Leanna! We have the Emfit. It is great (takes some trial and error getting the settings right, but is awesome!). We were just like you. Our son actually slept with me because of our fear. And I never got a good night's sleep. We looked into the monitor many times, but did not want to spend the money on something that we didn't know if it worked or not. We have found it very helpful! My son is now in his own room and we are actually getting some sleep!! I would recommend it!! If you have a FB account, check them out on there. They do offer a discount through the Danny Did Foundation (also on FB). And I also have a support group on FB (Hope for Pediatric Epilepsy), you can get lots of advice and support from other parents. Good luck with everything!!!

Michelle

Thanks Michelle!  I have been glued to the Danny Did Foundation all morning. Own room, getting sleep???  WOW, it's like a dream.  We will certainly try the Emfit.  I don't have FB..yet. I might be the last person.  Good luck to you as well.  

 Leanna

Michelle Keup said:

Hi Leanna! We have the Emfit. It is great (takes some trial and error getting the settings right, but is awesome!). We were just like you. Our son actually slept with me because of our fear. And I never got a good night's sleep. We looked into the monitor many times, but did not want to spend the money on something that we didn't know if it worked or not. We have found it very helpful! My son is now in his own room and we are actually getting some sleep!! I would recommend it!! If you have a FB account, check them out on there. They do offer a discount through the Danny Did Foundation (also on FB). And I also have a support group on FB (Hope for Pediatric Epilepsy), you can get lots of advice and support from other parents. Good luck with everything!!!

Michelle

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