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.

Tuesday, May 10, 2011

When Speech Blossoms

In the last few weeks Curtis and I noticed a definite plateau in Nadezhda's speech.  She has always progressed, never regressed, and has had some near-plateaus but this one kind of freaked me out.  I don't know why this happened exactly, but I would guess it is because she has had an increase of seizure activity.
Nadezhda has been having a few small seizures each week (not including some possible absent or complex partials - these are hard to detect) which is more than ususal.  We had our regular appointment with the neurologist a week and a half ago.  It was our regular check-up appointment with him.  During the appointment we told him about her seizures increasing in frequency so he said we should stop weaning her off phenobarbital for a while.  Then, after the appointment was over, she started seizing.  I asked the appointment-making lady to run to get Dr. Khan so he could see it.  If she is going to have a seizure, there is no better place or time for it to happen than in front of her neurologist, Dr. Khan.  He quickly came down the hall to us and stayed for the entire seizure.  Right when it was over, Dr. Khan said we needed to increase her dose of clobazam.  It seems to have really helped.  She's had only one seizure in the last week and a half (plus maybe a couple absents and complex partials - not really sure) since these medication changes were made.

So... yesterday here are some of the amazing things I heard her say:

    I am eating a snack
    One toy
    She also sang "Happy Birthday"

dang! there were two other phrases or songs that she said and now I can't remember them.  When she said, "one toy", Curtis and I looked at each other with wide eyes.  It was the most crystal clear and obvious thing she has EVER said.  It was awesome!  I am so very, very grateful to see progression in her again.  It brings us all joy in our hearts.

oh so cute


  1. She's so beautiful. I'm glad she's learning so much!!! We miss little Dezh:)

  2. Crazy cute pictures! She is beautiful. HOORAY for steps forward.

  3. She is a beautiful child, just like her mommy.


  4. Sweet Dez! <3 So glad you are having breakthrough moments; those are SO uplifting!!