Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Ketogenic Diet - March 1, 2013





Fiona started on the Ketogenic diet.  The Ketogenic diet is a high fat, adequate protein, low carbohydrate diet, primarily used to treat difficult-to-control epilepsy in children.
The diet mimics aspects of starvation by forcing the body to burn fat rather than carbohydrates. Normally, the carbohydrates in food are converted into glucose, which is then transported around the body and is particularly important in fueling the brain.  If there are very little carbohydrates in the diet, however, the liver converts fat into fatty acids and ketone bodies.  The body produces ketone bodies in a state known as ketosis.  The ketone bodies pass into the brain and replace glucose as an energy source.
The reasons Dr. Utz wants Fiona on the ketogenic diet are:


1) Zavesca interferes with how the body digests and processes carbohydrates. Lactose can interfere with Zavesca, which is why Fiona can’t have dairy. Paxton and I have been very careful about what Fiona’s diet consists of.  Her diet has always been low in carbohydrates and with breast milk there is a very small amount of carbs. KetoCal is a low-carb formula prescribed to epilepsy patients. Fiona's diet now consists of Ketocal mixed with breast milk.


2) It may help reduce her seizure activity.  For a period of time, Fiona was having mild seizures that occurred once or twice a week. Kappra has been successful in controlling her seizure activity,


3) The ketogenic diet may help increase the amount of Zavesca that reaches the central nervous system, which is the most important reason for putting Fiona on this diet.  Pharmacokinetic studies indicate that only about 25-30% of the Zavesca dose reaches the brain. A study in adult Sandhoff disease mice showed the combination of a ketogenic diet with Zavesca resulted in significant reduction in GM2 brain content and a 3.5-fold higher cortex Zavesca brain content compared to mice on a standard diet with Zavesca.


The doctors commented to Pax and me the other day that we were doing a great job caring for Fiona, who looks great considering all that she’s gone through.  At this point, however, I don't feel as if it matters how great of a job my best has done for Fiona when my best just simply isn't enough to heal her. It's really wearing heavy on me to see what GM1 is doing to my little girl.


I now find myself at a weird crossroad.   I want Fiona to get better but I have to ask and always consider at what costs it will take for her to feel better and whether or not it’s the best thing for Fiona. The treatment and the diet are not guarantees that it will all pan out smoothly for Fiona, and I have a lot of apprehensions.  What if none of this works and all she will ever know about life is what she has experienced up until now?  There is a tremendous amount of guilt associated with it all.  At the moment, I feel emotionally drained.  I know I need to be stronger... I think that has been a recurring theme in most of my updates, but never in my life have I had so much weighing on me and some days I just feel like holding her forever and never letting her go…



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