Monday, December 17, 2012

EEG results

normal. 

normal. normal. normal!!!!!!!!!!!!!!!!!!!!!!!!

The doctor said, "It looks great!  The change is dramatic!  There were a few things that are consistent with the meds he's taking, but I would consider this EEG to be normal."

We were cautiously optimistic that we could hear those exact words and left elated to think how far we've come this past year.


I don't know what it all means.  We didn't ask a lot of long term questions.  We didn't even ask for some explanation of what it all means. 

We focused instead on the next step.  The next step is to wean clobazam (or onfi as it is named here in the United States).  We will start with his afternoon dose.  This means that after this week, he will no longer need to take any meds at school.  :)  It'll be a slow wean - it'll take about 10 weeks before he will take his very last dose of this med. 

We are thrilled! 

Because he's doing so well, we don't have to go back to the keto clinic for 6 whole months!  This may have even been his last EEG ever - I have no idea.  But it's exciting to think about.  He was nervous about it, but we had all forgotten how easy these short EEG tests are - they don't involve that high powered cement like glue and air gun of the longer tests...just medical tape. 

As for the diet, we are holding steady.  We will increase his school snack from 50 calories to 100 calories as he has dropped a little weight. 

We told Ben that he gets more food and less medicine - a great day for a keto kid!

I feel so emotional.  Last night we watched Ben sing on stage at church in his first Christmas performance.  Last year, on Christmas day, he had two seizures during the service at church.  Watching him stand up there - without a helmet, without a seizure - I can't explain the joy.  We are so grateful.  Overwhelmed actually.  It feels like we are moving forward, moving away from those dark days.  We are beating this thing!

All thanks be to God our Father!

4 comments:

  1. Thank you Jesus! SO HAPPY! :)
    -Amy

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  2. Praise the Lord!! So happy for you!

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  3. Laurie, Laurie, I am soooo thrilled for you!! I had tears in my eyes reading this. I don't even have words for how happy I am for you and Ben and your whole family. Rejoicing with you!

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  4. Congratulations Laurie! Ben! The whole family! It's a group effort and no better gift than seeing all of your hard work and struggle pay off for your wonderful little guy. You are giving all keto families the gift of hope too. Thank you!

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