Thursday, July 25, 2013

EEG update

It has been too long since I've posted an update about Ben. 

{It's actually kind of wonderful, isn't it?  It means that things are going well!}

Ben's EEG went very smoothly.  I always forget how much easier the short ones are.  No glue, just tape.  And as he's getting older, it's so much easier to sleep deprive him than when he was little.

It took us a bit to get results back - we were out of town as was his doctor.  But we are so pleased to say that yes indeed the results are NORMAL!  This is wonderful news and so it is time to consider a Depakote wean. 

However the message from the doctor came with a warning.  He said that there is no way of knowing if Depakote is playing a role in his seizure freedom.  He said that it is very possible for the seizures to return and warned us to stop the wean immediately at the first sign of a seizure and to call them.  This warning sounded differently from him than when we've weaned before.  Most likely because we did see results with Depakote at one point.  Also because his felbatol level is low and his Depakote level has remained the same for some time.  So perhaps his freedom is from Depakote with a bit of felbatol. 

The strange thing about epilepsy is that when we first started down this journey when Ben was two, all of his EEG's came back normal.  Every time.  It wasn't until the summer of 2011 that we got the first abnormal EEG.  I don't really understand how this all works.  Honestly, I don't think the doctors always do either.  Epilepsy seems to be a big game of wait and see in a lot of ways.

We've been at this crossroads before.  It's decision time and it requires a step of faith.  We've never had assurance that a wean would work, or that a med would work.  I think we've decided to pursue the wean, but we are going to ask that we take it even slower than he recommends.  It will give us peace of mind and it can't hurt to be conservative.  I've heard of complications with this wean in regards to behavior as it is a mood stabilizer and I've also read about withdrawal seizures particularly with how long he's been on this med. 

We are optimistic.  We are thrilled with this great report.  We need wisdom to make a good decision.  The doctor should give us a schedule to wean within the week.  It is at that point that we have to just take a step of faith. 

I was reading a devotion the other day and read the following quote:  "Worry is a thin stream of fear trickling through the mind.  If encouraged, it cuts a channel into which all other thoughts are drained."   It is easy for my mind to become a raging river of fear and uncertainty.  So I need to chose to trust Him instead. 

Any fear seems to dissipate quickly when I read this passage.  I love the image of finding rest in His shadow, living in His shelter, being covered by Him.  I'm thankful for the peace He offers. 

Psalm 91

Those who live in the shelter of the Most High
    will find rest in the shadow of the Almighty.This I declare about the Lord:
He alone is my refuge, my place of safety;
    he is my God, and I trust him.

For he will rescue you from every trap
    and protect you from deadly disease.

He will cover you with his feathers.
    He will shelter you with his wings.
    His faithful promises are your armor and protection.
 Do not be afraid of the terrors of the night,
    nor the arrow that flies in the day.Do not dread the disease that stalks in darkness,
    nor the disaster that strikes at midday.Though a thousand fall at your side,
    though ten thousand are dying around you,
    these evils will not touch you.
 Just open your eyes,
    and see how the wicked are punished.
 If you make the Lord your refuge,
    if you make the Most High your shelter, no evil will conquer you;
    no plague will come near your home. For he will order his angels
    to protect you wherever you go. They will hold you up with their hands
    so you won’t even hurt your foot on a stone. You will trample upon lions and cobras;
    you will crush fierce lions and serpents under your feet!
The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name. When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.
I will reward them with a long life
    and give them my salvation.”

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...