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.

Monday, February 28, 2011

My Mind's Morbid Meanderings

Currently I am contemplating mortality rates.  Several people have told me not to think on sad stuff or research about her disease so I won't get sad.  But I say there is power in knowing.

However, I am grateful that I was oblivious during the beginning of Nadezhda's seizures because they all went in to status epilepticus (techically it's >30 min of seizing but it is a concern and is ER worthy if >5 min) which has a much higher death rate than a short seizure.  Also, I was having a hard enough time coping with these seizures in general so I didn't need to know my child was literally fighting for her life every time. (Did i get my > < symbols in the right direction? - I was trying to say greater than).

But now I am ready to know what is going on with her to the fullest extent - or so I think.  I have heard that the mortality rate for Dravet Syndrome is about 14 - 18 %.  This is SO high.  For regular, healthy kids it is less than 1%.  (I really suck at numbers so perhaps I am way off but I did triple check my math).  I did a little research on mortality rates (simply explained at this link although this is not the most official looking site - but the chart is from SSA) and how they are calculated.  This number is deaths in a given population per 1,000 people.

Before I even knew what SUDEP (sudden unexplained death in epilepsy) was, that Dravets had a high mortality rate, or before I even knew my daughter had anything beyond plain epilepsy, I feared I would walk in to get her from nap time only to find her seizing.  I would also worry that a seizure had taken her life.  But now I know how real this nightmare could become.

Picture this:  Each night, before you go to bed you want to check on your child to be sure they are sleeping soundly.  However, you also need to remember to check their diaper for pee or poo, check their temp to be sure no fever is on its way, check as best you can that no seizure has happened, or that no seizure is currently happening.  But before you go into your child's room you pause for a deep breath and enter quietly, not so much so you don't wake your child but to listen for sound of breathing.

I fear every night that when I check on her I will find no signs of life.  Sometimes she breathes so quietly and with so little movement that I have to put my hand on her back or chest to feel the rise and fall motions of breathing.  I have also put my hand on her shoulder and nudged her to see if she would startle a bit because she looked too still.  I think I have a heart attack every time.

My worry doesn't stop there.  I have to check on her constantly through out the day to be sure she is happy and healthy as well.  I recently put a movie on the computer for her at the table and let her sit in my chair to watch it.  I was barely 4 or 5 feet away from her cooking dinner in the kitchen.  I had the fan on above the stove so it was hard to hear and I had my side to her for maybe 5 minutes while I was lost in thought.  When I turned back around to see her I was horrified to find my daughter had fallen out of the chair and was seizing on the floor.

Also she is ataxic in her movements so at times she will do these sudden-looking movements that resemble a seizure.  They may actually be myoclonic jerks, but generally I think it is just her stumbling-like walking motions.  I always catch my breath and wait for the next moment to determine weather a seizure is starting or not.

So I am constantly checking on her just to be sure she is not seizing and that she is alive.  But the worst time for me is checking on her before I go to bed.  Will she be currently seizing (without us even knowing about it) or will she have already died?  I am so afraid of this.  I want her with us forever!!!! - I mean here ON EARTH forever!!!


  1. This post is hard to read but I know it's got to be good for you to write. I think 8 years of life has lulled me in to some security. Some, not complete. Hopefully the years will do the same for you. I love you so much. I want to see that little nugget again!

  2. Thanks for sharing this even though it was hard I'm sure it was hard for you. It hurts my heart that you have no choice but to think about this all the time :(

  3. I am new to your blog, but am a Mom of a 2 yr old with Dravets. I feel the same way you do. Every time he seizes I hold my breath in fear it may take him. His longest status was 4 and a half hrs. Our primary care doc ordered us a pulse ox machine and our baby sleeps with it on. It has gone off when he has had a seizure before because he desats. Sometimes it dings alot and keeps us awake, but at least I know it will alarm if he is having trouble breathing. Your daughter is adorable and it sounds like you guys are great parents. Keep up the good work, and know that you are not alone!!

  4. The kids that I worked with had video monitors in their rooms so that the parents could see them and hear them in the night to make sure that they weren't having siezures. It might be something that you want to look into getting. I think they got theirs at Babies R Us or Toys R Us.

  5. Gail, this is the first time I've been to this blog of yours and I've been reading post after post, just hooked. I didn't know she'd been diagnosed with this particular rare disease, which I'm so interested in learning more about. I just remember the one time I helped give her a ride in the ambulance to the airport for a ride to Utah after one of her LONG seizures they couldn't stop. It's a night I definetely have never forgotten because I was just newely pregnant with Ethan and it hit hard watching you deal with your baby surrounded by tubes and wires everywhere. Keep on writing! You never will truly know how many others you will help by sharing your trials and your thoughts. And just to let you know, I sometimes feel like strangling my child too even though I love him a bazillion times over. I like to think it's normal for mom's to not always "cherish" every moment. :) Hang in there! I can only imagine the anxiety and stress you deal with daily.

  6. This post gives me a better insight into what you and Curtis are experiencing. I'm glad you shared your thoughts. Dad