Sleep,or lack therefore of...

Thursday, July 31, 2014

It seems like many Dravet children suffer from sleep problems.  Early on I noticed Paloma was very restless at night and would wake up frequently.  I remember thinking when she was few months old that she should be sleeping through the night by now, but it never happened.  It seemed like her legs were in constant motion awake or asleep. At five months she was placed on phenobarbital and keppra which also interferes with sleep.  I'm not exaggerating when I say she has only slept through the night maybe three or four times.  I say that not to complain or whine but to put our lives in perspective. A lot of people are curious about what our lives are like now.  The lack of sleep we face is a huge struggle for us and there is no relief in sight.  I have to learn how to live on  very little sleep, I have accepted that.  We have fallen into somewhat of a pattern lately.  I give a snack mixed with melatonin around 7:30, give meds, and rub her big toes with either frankincense, serenity or balance oils from Doterra. I put her in her bouncy chair and she goes right to sleep.  Later on when I go to bed I put her in her crib which is right against my side of the bed. I pray over her every night that if she has a seizure I will wake up.

  When Paloma first began having seizures I put her in our bed because I was so freaked out and scared she would have one at night.  I remember telling our nuerolisgt our ingenious idea of safety pining a jingle bell to her sock at night in hopes that it would wake us up.  He sort of laughed at our ingenuity and said it was a good idea.  Looking back I am pretty upset that he failed to tell us about the increased risk of sudden unexplained death in epilepsy also known as SUDEP, which Dravet patients are at a higher risk of.  He also failed to tell us there are seizure monitors that we can use that are much more effective and could save Paloma's life.  I had to find that out from other parents.  

We purchased two monitors.  The first one called we purchased is called Emfit Honestly, it hasn't worked great for us. I think she may be too small for it to really work well. It detects movement and is placed on top of her crib mattress.  A few day after getting it I was awakened to the sound of Paloma having a seizure in the middle of the night face down.  She was covered in drool and sweat.  I think she had been having it for at least ten minutes but the monitor didn't go off and we ended up calling 911.  I ended up buying a second monitor after that one just to be safe. It is SAMi and so far it has worked great for us.  It has an infrared camera that attaches to the wall above her crib.  The video goes to my ipod which I leave beside my bed.  If she moves or blinks rapidly it goes off.  So far it has worked well and has given me some peace of mind but there is still a lot of fear every time I lay down to sleep at night. 

Lack of sleep is very hard but every morning when I see her face I am so thankful that she made it through another night I don't even think about sleep or lack therefore of...

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