Update

Things are going well.  It has been 3 months since the last myoclonic seizure and about 6 weeks since the last tonic-clonic.  Nora is shiny, happy, articulate, and energetic.  She recently learned to ride bicycle without training wheels.  Her 4th birthday is just around the corner (June 22).  She’s still got some of that Nora aggressiveness, but I guess that’s just her.

We got the OK from the doctor earlier this week to decrease her Depakote further.  She is now on 125 mg twice a day, which is half of her “normal” dosage.

She is also now on a 3.5 diet ratio, and has been there for about a month.  She seems to be tolerating that really well.  It doesn’t feel any different in preparation and administration than 3.0.  I’ve been checking her ketosis right away in the morning quite regularly and that has consistently been at 160 (level 5 out of 5).  I take that as a good sign, as the most recent tonic-clonics seem to be have been presaged by anomalous low-ketosis readings a few days before.

So, as with all who live with epilepsy, we are always waiting for the next seizure: the next unwelcome bolt from the blue.  But for now, Nora is doing great and everything is headed in the right direction.

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4 thoughts on “Update

  1. Yay!!! I am glad Nora is having a good season. You are right, though, we always wait for the next seizure (we are on week 21 seizure free!) We are going through a transition period with trying to work the diet out as school is out and any change poses a challenge. Keep up the great work!

  2. Hi!! Lovely to read how well Nora is doing, long may it continue! Matthew also has Dravet and is also doing well, looking forward to his 18th birthday soon! You may know of Matthew’s Friends, the charity he inspired his mother to start back in 2004. You may find the website/forum there useful in your keto journey. Sending best wishes from the UK..

    • Thanks Julie! We have used some of the information on the Matthew’s Friends website, although Nora does not have Dravet (according to the genetic testing they have done). Even without a specific diagnosis, our doctors look to similar identified syndromes as a guideline for how Nora will respond to treatment. Things are going great–thanks for your support!

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