Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Friday, February 18, 2011


Yesterday, we had an appointment with Dr. Khan, Nadezhda's beloved pediatric neurologist.  He gave us a new medication to try.  It is a med we should give her when we see that a seizure is going to come.  There are certain signs that a seizure is coming and when we see them we should give this new med, klonopin, brand name for clonazepam. Dr. Khan informed us that she couldn't be at school while on this pill because it was likely to make her dizzy or woozy.  Also, we are supposed to give this med for the duration of an illness that is likely to cause a seizure.  I asked if having her on this med, that makes her "out of it", for so much of her life was worth it.  He said that avoiding seizures was of utmost importance.
According to Dravet Syndrome info I have read there is a correlation between number of seizures and delays.  Also, status epilepticus (seizure longer than 5 min) increases risk of death.  And there is "sudden unexplained death in epilepsy.  So avoiding seizures is very important.
Today her pre-school teacher called to tell me she was feeling really warm and was extra wobbly.  I went up to her school to check her out.  She felt really warm although the thermometer was reading a normal temp.  And she was wobbly and floppy and extra cuddly.  These are sometimes signs of an upcoming seizure.  So I gave her her first klonopin pill, it dissolved on her tongue and I brought her home.
She was looking exhausted.  I fed her lunch, changed her diaper, and put her down for a nap.  NO nap ever came!  I am not sure why but she just didn't want to sleep.  Tonight when I put her down for bed, she looked exhausted again but she wouldn't sleep... for an hour anyway.  She threw a pretty great temper tantrum and then finally turned off her light, crawled in to bed, pulled on her covers and fell fast asleep!
I was really worried that she was going to go through all of her childhood super drugged (more than she currently is) because of this new med but I am pretty sure it's going to be ok!


  1. My neice has epilepsy, its tough. But they just did a newer surgery for her and we are praying it works. She is now 19!!!! I am praying for your family!!!
    Jeanne Finn

  2. i hope the new medicine works for her! you're a trooper, gail!