Friday, July 5, 2013

18 months and counting!

We are so excited to reach the 18 month of no seizures!  If my memory is correct, we have made it to this 18 month mark before.  After we got seizure control with trileptal, the first med, we went 18 months without a seizure.  Then they returned and soon after things got crazy and the Doose diagnosis was given.  So this month marks progress - next month will be record breaking for him!

We visited with our neurologist the other day.  His white blood cell count continues to be low so we are having to monitor that more closely again.  This means more frequent blood draws for Ben.  

We discussed our next step in the weaning process.  We all agreed that depakote should be the one to go next.  On top of causing slower processing overall, it affects attention in ways that actually mimic ADHD characteristics.  Getting rid of this drug may actually help clear up some of the issues he's having in school.  We'd love to wean for the remainder of the summer and give him the advantage of starting first grade without this med. 

The doctor advised us to have another EEG done before we make this decision.  He said that AED's (seizure meds) will never make an EEG look better.  They will control seizures, but the abnormal activity can still be seen on the EEG.  The Ketogenic Diet however, can change an EEG.  It can actually make the EEG look better than it really is.  I didn't know this.  Our last EEG was done while he was still on the diet.  He was also still on clobazam.  This EEG will give us a better picture of what is really going on in his brain while on felbatol and depakote.

We go on the 12th of this month.  He will be sleep deprived again and will be hooked up with the smelly glue - but it's still so much easier than the longer tests.  And it will give us more information to make a better decision.  I know that it is going to be normal.  I believe it.  I know that he is a different child than he was before.  We won't meet with the doctor afterwards, we will have to wait for the results by phone. 

He's been waiting to play baseball since fall of 2011 when the seizures prevented him from playing most games that season.  This was him on the way to his first practice - he couldn't get to the field fast enough.  What a joy to see him doing what he loves most (aside from mowing the lawn, that is)! 

I've been reading Psalms this month and this one is so powerful I had to share it with you.  No matter what we are facing, God is our refuge.  He is our strength.  We have so many more good days than bad days lately - we are in such a different place than before.  But if I let my mind wander...fear can easily overtake my heart.  The truth is that no matter the outcome of this EEG, God is our strength.  The Creator of all things is with us.  That thought is greater than any fear my mind can imagine. 

Psalm 46
God is our refuge and strength,
A very present help in trouble.
Therefore we will not fear,
Even though the earth be removed,
And though the mountains be carried into the midst of the sea;
Though its waters roar and be troubled,
Though the mountain shake with its swelling...
God is in the midst of her, she shall not be moved;
God shall help her, just at the break of dawn...
The Lord of Hosts is with us;
The God of Jacob is our refuge...
Be still, and know that I am God...


  1. I'm so thankful for the last 18 months! And thankful to see Benny back on the field. :)

  2. Praise God for bens seizure freedom!! How did the EEG go?