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Thursday, November 17, 2011

Ketogenic Diet/ Mickey Button

This is a picture that the geneticist gave us to show Chromosome 1 and the deletion that Carter has.  As you can see they are labeled, and his deletion is from approximately 1p36.33 to 1p36.32.  She never said if that was a larger or smaller deletion than most.  Just an interesting fact.

We have decided to go ahead with the Ketogenic diet and will be admitted to Primary's near the end of the month for 2-5 days.  The ketogenic diet is high in fat, normal in protein, and low in carbohydrates.  All three of these have to be in the diet to control the seizures.  For every 3 or 4 calories of fat, there is one gram of protein-carbohydrate.  Since Carter is on a G Tube, he will receive the Ketocal formula which is specialized just for this diet.  The G Tube should make this a much simpler process since we aren't controlling what he eats or doesn't eat by mouth.  We have to dedicate at least two months to see if this helps; the dietitian said it helps some kids for years and then peters out.  We are hopeful that this will help control his seizures if not diminish them entirely.  Hopeful right?

The four options with seizures are as such:  medication; but once they have tried 2 or 3 the odds of any medicine helping is less than 5%.  The second option is to remove parts of the brain- which is not possible for Carter because his seizures come from all over the brain.  The third option is to have a device inserted called the VNS Therapy.  It is a treatment where an implanted device generates electrical current that is transmitted to the brain via a nerve in the neck. This treatment has been shown to reduce seizures in approximately two thirds of those who have the device inserted.  The fourth and last option is the ketogenic diet. 

Sleep Study  the nurse called me and said the EEG they ran all night long did not show anything significant.  It really did not tell them much.  Bummer.  I'm still waiting to hear what the actual sleep study showed.
Mickey Button  Carter is finally past the 12 weeks of "recovery" since his G Tube placement.  The doctor will be switching out his long tube for the Mickey button with balloon.  We are excited as it's much more low profile, he can have normal baths again and also swim.


  1. Thank-you for sharing this information.

  2. I'm sorry to bump such an old post, but is the me to formula a premise thing? We just found out today that our tubie has a 1p36.33 deletion, and he gets a high fiber formula through a home health company.