Hope Rising

The funny thing about hope is, you don't always realize that you've run out of it.  That is, until someone give you a glimpse of what could be!  I think that over the past couple of years, without really realizing it, our hope tank had run very close to dry.  It makes sense now, actually.  I can see that my negative attitudes, darkening moods and my pulling away from relationships were just that … lack of hope.  Well, that and menopause!

How could I lose hope and not even realize it?  I can trace it back.  From Dawsyn’s first seizure in February of 2002 until early 2006, Dravet’s Syndrome had been a part of our life but we never let it consume us.  In ’06, it took over with a vengeance!  For over a year, we took weekly ambulance trips to Children’s Hospital because we couldn’t stop the seizures.  Our happy, bright, beautiful girl was rapidly disappearing and was being replaced by a drooling, non-verbal child with dull eyes.  We could barely recognize her anymore.  Our hope, however, was intact!

We kept fighting to bring her back.   For three years we tried everything, homeopathy, diet, meds, more meds, different meds.  We tried anything and everything to help us gain control over the seizures.  Nothing helped … but we continued to hope.  In 2007 we began to keep detailed records.  She had 1648 seizures that year totalling over 11 hours.  We hoped she’d get better.  In 2008, she had 1938 seizures totalling over 17 hours.  We started a new treatment in November 2008 and hoped it would help.  It did.

The monthly intravenous immunoglobulin infusions (IVIG) resulted in a decrease to 363 seizures (3.34 hours) in all of 2009 and only (can I really say ONLY?) 264 seizures (3.27 hours) in 2010 to date.  We’ve stabalized!

Dawsyn started to return to us.  The sparkle in her eyes, the mischief, the smile (although usually quite twitchy) and the laughter had returned to our lives.  She ever so slowly started to recover lost skills and learn new ones.

We were pleased but couldn’t help but feel that we could be doing more.  She could be better yet.   The meds had not worked before we started IVIG; they were not working now, so let’s lose them.  They cause behaviour problems and are definitely a deterrent to learning.

Every attempt we made to speak to our neurologist about this issue was met with a firm “NO”.  The attitude we constantly received was, “She has stabilized.  Don’t mess with success.  Leave well-enough alone.  This is as good as you’re going to get.”  Our last appointment with him was when we decided to try the IVIG in late 2008.  Other than a couple of brief (5 minutes or less) visits from him while Dawsyn received her infusion, we have not spoken to a neurologist for the past 24 months.  Hope began to wane.

Two years of little change in seizure activity, we began to believe that this was going to be the way it was going to stay … unless it got worse.  There was no hope of it getting better.  “This is as good as you are going to get it” began to seep into our bones as hope seeped out.

I had to walk away just now.  Sometimes the anger and the tears overwhelm me and I have to “take a breath”.   The Oilers lost to San Jose, 4-3.  Everyone is off to bed now and I WILL finish this.

Friday, November 12, during Dawsyn’s latest IVIG infusion, I received a call from the Neurology Clinic.  Our former neurologist has moved away and someone new has come.  He wants to see us … immediately!  We could have an appointment as early as Monday.  “Seriously, MONDAY?  We’ve not been able to get an appointment for two years and we can get in by Monday?”   Apparently, Dr. Rho is anxious to meet us and go over Dawsyn’s case. 

I couldn’t wrap my mind around it and booked an appointment for two weeks down the road so that Ben could be sure to get the day off work.

Dr. Rho cut right to the chase.   Epilepsy can be dealt with in a number of different ways.  There’s drug therapy, immuno-therapy, diet and surgery.  For Dravet’s patients, brain surgery is seldom an option because the seizures are not limited to only one spot on the brain.  They have no one focal point. 

One look at Dawsyn and he says, “She’s way over medicated!”   The meds obviously were not working before we started IVIG, IVIG was definitely helping, why is Dawsyn still on the meds?  Any of this sound familiar?   First order of business, remove meds!  Ben says, “Oh, I’m gonna like you!”  

Next order of business, Dawsyn obviously responds well to immuno-therapy.   We could bump up the IVIG schedule or add a week-long dose of prednisone between IVIG treatments.  Side-effects?  Relatively less that the drugs she is currently on. 

Another option is to try a modified version of the ketogenic diet again.  We tried the ketogenic diet for nine months back in 2006/07.  It reduced the number of seizures for the first couple of months but then lost its efficacy. 

He told us about a treatment they use often in the US but is not used much here in Canada.   Why?  We’re not sure.  It’s called a Vegus Nerve Stimulator (VNS) and involves surgery.  The Vegus Nerve is a major communication link between the body and the brain.  It delivers impulses to different parts of the brain.  The VNS consists of a pulse generator (a toonie size disc) that is fitted beneath the skin under your left collarbone or close to the left armpit where it is almost invisible.  Two fine wires are run just under the skin to the left vagus nerve in your neck.  These wires carry the impulses from the pulse generator to the vagus nerve.  The regular impulses of VNS Therapy help prevent the electrical irregularities that cause seizures. 

We were in just a little shock!  What is this you are telling us?  We have OPTIONS?  Half of my brain was screaming, “WE HAVE OPTIONS!”  while the other half was raging, “Why the H-E-Double Hockey Sticks are we just hearing about this now??”

We’ve been sent home with a plan!  Really, a plan?  I’m still trying to wrap my head around it.  First priority is to wean Dawsyn off the drugs.  We started today!  We know that this will probably involve break-through seizures as her poor med-addicted little body will rebel against us taking them away after all this time.  However, the end result will be a little girl who does not have to think through a cloud of medication.  We fully expect to see a new child with unlimited learning potential when all is said and done!

Our next job is to study the information we brought home with us and decide what to do next.  It was an easy decision for us.  We will call the Clinic on Monday and ask them to set up an appointment for us with the neuro-surgeon to have the VNS implanted.   We are anxious to see how Dawsyn responds to this therapy. 

If, after a number of months, we do not see as much of an improvement as we would like, we can try the prednisone between IVIG treatments and/or diet modification.  The point is we have OPTIONS!

On the way home, we couldn’t stop grinning.  I felt downright giddy!  At first I didn’t recognize the feeling welling up within me.  It came to me in the middle of the night when I couldn’t sleep for all the thoughts running through my head.  I almost missed it … it’s HOPE!