Monday, September 17, 2012

neuro visit

We had a great visit with our neurologist and dietitian!  We felt like we had their undivided attention and that they were actually all on the same page despite the fact that we meet with them at separate times. 

His blood work looked good.  White blood cell was low, but that was probably because of the illness and it tends to fluctuate each time we test it.

Depakote level has maintained.  We like it to be near 100, but it's holding steady at 85.  At Christmas, when things were at their absolute worst, his level was in the 20's or 30's.  So 85, is great!  It also means that we could increase his dosage if necessary.

Felbatol level is also not at its maximum.  This is good because it means we are maintaining seizure control without having to max out another drug.  If we needed to increase it, we could. 

We all agreed that clonazapam is the best one to wean first.  It is a benzodiazepine.  I'm not sure what it all means, but basically this class of drugs is less favored because of the side effects and the dangers involved in long term use.  Since clobazam is also a benzodiazepine, the doctor felt that we needed to try to eliminate one of those first.

Some of the side effects of clonazapm include drowsiness, problems with walking and coordination, dizziness, depression, fatigue, and problems with memory.  All four of his meds have similar side effects, but our hope is that they will be lessened as we decrease each med.

We are weaning slowly.  If all goes as planned, he will take his last dose of this med on November 25th. 

Then in December we will have a short (about 45 minute) EEG.  We've done these short ones numerous times before - since he was two.  It involves sleep deprivation, but no hospital stay.  :)   Then we will meet with the doctor immediately afterwards.  We are praying for no abnormal spikes.  If the EEG looks good, then we can consider weaning the other benzo drug, clobazam.  If it doesn't look good and he's still struggling, then we will look at making changes to the diet.

We talked about the insomnia, and he suggested that we try the melatonin when he wakes in the middle of the night.  He falls asleep just fine - in fact he begged to go to sleep already and he's out.  He typically begs to go to bed at about 7:00 each night, but then is wide awake a few hours later.  So hopefully, this will help.  But the health food store is overwhelming.  It's hard to understand the differences and then trying to find hidden carbs is a task of its own. 

Leeon is taking him tomorrow morning to get more blood work completed.  We are checking on his lipids, his white blood cell count again, his zinc level, and also a metabolic panel, as well as the level of acidosis in relation to the ketones. 

I'm thankful that we had God's peace throughout the entire visit.  We are blessed with excellent medical care.  We are all a little scared about this wean.  The doctor echoed our apprehension, but it's time. 

Our Pastor preached this Sunday on the greatness of God.  In Isaiah 66:1, it says, "This is what the LORD says: "Heaven is my throne, and the earth is my footstool. Where is the house you will build for me? Where will my resting place be?" 

Imagine how big God is - our giant earth is His footstool.  But yet, He cares deeply about my son and the fact that he is more tired than any 5 year old should ever be.  This song has blessed me in so many ways as I think of our great, big God holding the hand of my little son. 

As long as He's here,
we fear no evil,
the way is made straight,
there's good coming,
everything is changed. 

Thank you for lifting us up in prayer today.  Please continue to pray that we will see less fatigue, more stamina for school, and continued seizure freedom.

King of this World
You're holding my hand
And as long as I hold on to You
I know I can stand

Because You’re here
I fear no evil
Because You’re here
The way is made straight
Because You’re here
There’s good for Your people
Because You’re here
Everything’s changed

(Double click on the play button to listen to the song.)

1 comment:

  1. You are on our mind and in our prayers here at KVAG...I pray God's courage and all the things that are needed to happen will be abundantly above all you can ask or think and that there will be great peace and Jesus Name