300th Post!

I wanted to say something profound to mark this special occasion, or at least something more than a few pictures of random happenings around here.  Today is a special day--not only because it is Valentine's Day, but because today is the day my niece has a doctor's appointment to find a new medication for her ever-increasing seizures AND the day she starts her own ketogenic diet.  Well, not exactly the full-blown ketogenic diet (because you have to measure everything to the gram and have a dietician as well as your neurologist involved), but more like a modified Atkin's Diet.  I've been doing a lot of research online this past weekend about what this diet is, how it works, when to expect results (if any), and what it will mean when I am babysitting Caida. 

A full-blown ketogenic diet is a diet in which someone has a 4:1 fats to carbs and protein ratio.  That means for every gram of carbohydrates or proteins Caida eats, she should be eating 4 grams of fats.  This doesn't sound too healthy, right?  You should know within 3 months whether or not this diet is working, and if it's not, you stop it.  But even when it works, children are only on this diet for 2 years or so, so while they have to deal with higher cholesterol and the higher risk for kidney stones (1 in 20 instead of 1 in thousands), the effects aren't permanent.  The whole purpose of this diet is to sort of trick the body into starvation mode (like when fasting) so that the body stops using carbohydrates for energy and instead turns to burning fat.  For some reason that scientists and doctors are still exploring, the ketones that are released when the body turns fat into energy seem to help calm or even cure seizures.  (50% of dieters see a 50% or more improvement, while 12-15% see a complete cure).  Of course, the strictness of this diet (even one SNACK in the wrong direction can trigger an epileptic reaction) makes this a last resort, when medicines have failed to help. 

Caida's seizures have been getting more frequent AND worse.  An EEG in January showed that her brain is in a constant seizure state, even when her limbs are in her control.  But she's also had mild-moderate seizure every 20 minutes or so.  And a few pretty serious grand mal seizures in the last few months.  There are still some medications left to try, though, so they haven't put her on the diet officially.  But the doctor said that cutting out major carbs (so bye-bye bread, cereals, pastas, rice...all those things our family LOVES) and all refined sugars (no more anything with white, brown, or powdered sugar or any form of corn syrup...so pretty much all sweets and many packaged foods) should help when combined with her new drug treatments, and it would prepare Caida in case she has to go on this diet in the near future. 

What is LEFT you ask?  :)  I DID find a list of foods that she can eat, and at this stage pretty much all fruits and vegetables are still okay (on the full ketogenic diet, many fruits and even some veggies are off-limits).  Pretty much all meats are okay, as well as butter, mayo, eggs, creams, and all those yummy fatty sauces.  Nuts, cheeses, and sugar-free jello are good snacks.  In addition to the obvious (like cookies or breads), she should stay away from potatoes, bananas/peaches/nectarines/high-carb fruits, and popcorn, and if she can avoid peas and carrots she should.  Check out http://www.keto.org/foods.htm for the full list. 

My thoughts and prayers are with Caida, and her mom, as they embark on this new stage in the journey to curing her epilepsy once and for all!  I hope the doctors can find medication that really will help.  I hope the new diet, although it will be super difficult, will be helpful in making her healthy again.  I hope that Caida can know what it means to be in school again, with new friends and new fun things to learn (her current school is not equipped to handle her seizures and have suggested homeschooling until new medication or the process of enrolling in the district's "special ed" school can be completed).  I hope she can know what it means to go for a whole day without falling down and hitting her head on something, without that fear of an oncoming seizure, to use her legs as a 6-year-old is meant to.  When whatever it takes to help her heal eventually does work (and I KNOW it will!), we will have a huge party.  Maybe we'll invite you.  :)