Pass the mayo, please

November 22, 2016 – Meeting with the Ketogenic doctors

Today is the day.  The day we have been waiting for as soon as it was apparent that the medications were not working.  The day that we are hopeful will set us on a new path that could change everything for Reagan and give her a childhood without seizures.  And possibly, if we have any luck left in this world, shrink the beast*.

After checking in and rampaging through the toys in the waiting area, we hear them call Reagan’s name, it’s our turn.  They take her temperature, weight, height, and head circumference.  And then, the dreaded pulse.  They use a sticker with the sensor on it that has to be wrapped around a finger or a toe.  It never goes well.  Reagan has been over doctors and nurses and measurements and tests for a while now.  After she watches Dad do it, she finally concedes, but with a lot of tears.  Once she has calmed down, and she has collected her payment of stickers, we are off to our room where we will meet the doctors.

As with any 2.5 year old, Reagan is restless and not at all excited about being in a hospital room.  We bring out all of the stops.  Toys, books, her Purple Baby, and then, finally, the big guns, her tablet.  Of course, being the smart parents that we are, we neglected to charge it the night before, so it promptly dies within 5 minutes of use.  So we bring out the pièce de résistance, Daniel Tiger on my phone.

Blake and I have done a lot of research on the ketogenic diet and feel that we are well prepared walking into this appointment.  We quickly realize that we definitely are not prepared for how intense this is going to be for her.

We will be checking into the hospital for a full five days, in the beginning of January, to start the diet.  Because the diet is so intense, she has to start it at the hospital so that they can monitor her body as she adapts.  Initially she will put her body into a short starvation mode, where it burns off the remaining glucose in her body from past carbohydrates.  After that point, she will begin eating high fat content foods.  This will put her body in a state of ketosis where her body and brain are running off of ketones instead of glucose.  The high ketone level comes from the body’s conversion of fat to ketones to process them for energy.  It is this state of ketosis that can decease, or possibly eliminate, her seizures and her Epilepsy spark.

She is going to be on a 3:1 ratio ketogenic diet, which is basically 3 grams of fat to 1 gram of protein/carbs.  She eats so much meat already; it is her favorite food, so at least that part of the diet will be as easy as it could be.  But the fat, all of that fat, that’s going to be the hard part.  She really doesn’t eat a lot of fat.   She eats all meats, cherry tomatoes, grapes, apples, strawberries, raspberries, blueberries, and anything red.  But not fat.  The fattest thing she eats is almost a full piece of bacon.  And even then, she normally doesn’t finish it.

Looking at some of the recipes I can’t help but worry that we won’t be able to get her to eat what she needs to be eating.  One recipe I saw was celery sticks, and instead of peanut butter on them, it was full fat butter.  Another recipe just had a frozen ball of butter that you can roll in cinnamon to make it a little tastier, the delicious butter cookie.  These are definitely extreme examples, and Blake has done a lot of research on 3:1 recipes that Reagan will like, but it’s still safe to say we have one hell of a challenge ahead of us.

We have 6 weeks to introduce new foods to her with the hopes that it makes the transition onto the diet easier.  If we can get her to like these fats now, it won’t be as much of a shock when they become her main diet.  Since her appointment, she has tried olives and macadamia nuts.  While she wasn’t a fan of either, at least she only spit out the macadamia nut instead of gagging on it and spitting it out like the olive.  So maybe there’s some hope there?

We also have 6 weeks to get her used to eating all the food on her plate, and not just picking at one thing.  We have to carefully monitor her 3:1 ratio with everything she eats.  Everything has to be exactly weighed and perfectly calculated.  Her only eating the meat on her plate, and not the veggie, can throw off her ketone level.  Her sneaking a bite of something not measured and calculated into her daily diet can throw her out of ketosis.

A sip of juice, a bite of birthday cake, a handful of blueberries, they can all throw her out of ketosis and bring back her seizures.

   

First, time to enjoy some post appointment sausage, berries, and tots.  Then, time to get cozy by the fire and think about the road ahead. 

 

*There have been only a few small studies on the impact of a keto diet on brain tumors that have shown that starving the tumor cells of glucose can shrink tumors.  The studies have not been large enough so there is not enough research to completely determine if it does in fact help, but there is hope.