On Monday we were in St. Paul for an appointment with Dr. Doescher, Grace’s Epileptologist.  Her EEG continued to show good patterns during time of awake but when going to sleep and waking up it was really messy…nothing new here.

Some liver levels are high, they spiked several months ago so in response we decreased the ratio of her Ketogenic Diet.  High liver enzyme levels can occur when after being on the keto diet over two years in some patients.  We will be following up with GI to see if they are concerned and also eliminating the Banzel that we started at the beginning of the year that didn’t end up doing much of anything.  We are hoping that it is just the Banzel causing the problem, Dr. Doescher had several patients that had side effects that were never discovered in the trial study.

We will continue to go up on the Vimpat and may talk about going back on Felbatol once we get the liver numbers straightened out.

We have completely run the gamut on medications, there are no other treatments available for Grace are are currently in trial or available overseas.  Our only option left is surgery.  We made an appointment to talk to the neurosurgeon in January when we go up for our next visit.  We need to give Vimpat a full try first before we look at surgery.  We knew for the last 18 months that this was a real possibility but when it doesn’t happen you keep pushing it out of your mind further and further; an appointment with the neurosurgeon makes it real.  Despite this we are surprisingly at ease so far.

Kevin

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