Wednesday, December 21, 2011

Bed side stack

Bed side tables are notorious resting spots for our latest reading material. So what's on your bed side table? Parenting magazines? Cosmo? The Help? The latest Nora Roberts saga? A stack of books you're planning to get to next summer?

Mine used to be like that. Between Oprah's Book Club and my interest in environmental litigation, my bed side table used to be stacked with a random mix of heartfelt and science, She's Come Undone meets Cadillac Desert, free time and free brain cells. But over the past 4 years, those books have slowly been replaced with reading of a more practical nature. And sadly, I don't get to it all, even what I plan to read in the summer time.

Although I am not a new mother, I keep the Meditations for New Mothers - a book of random motherly quotes - on my table for a laugh and a smile... and sometimes for irony.

The sarcastic: Kids, yeah, I like kids... medium rare. -- W.C. Fields
The touching: The supreme happiness of life is the conviction of being loved for yourself, or, more correctly, being loved in spite of yourself. -- Victor Hugo
The reassuring: Wrinkles should merely indicate where smiles have been. -- Mark Twain
The hopeless: Keeping house is like threading beads on a string with no knot at the end. -- Anon
The motivational: A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born. -- Antoine de Saint-Exupery

The other fluffy book on my table is All the Ways I Love You - another Hallmark recordable book - read to the boys by my Grandma Jean. I will admit that I read it more than they do! Even at 32, its nice to have someone read you a special book and tell you that they love you as many times as you want... all you have to do is turn to the right page.

The remainder of my books aren't fluff. I've read the books about parenting a child with cerebral palsy each several times. But I keep them close at hand for reference and ideas.

The new books on my stack are the ones about the ketogenic diet. I hit up Amazon three weeks ago for some keto reference material when Will had his latest seizure and we started walking through next steps.

While not an expert on the ketogenic diet, I did promise an explanation on it a couple of weeks back.

The ketogenic diet was created in the 1920s. Somehow, doctors started figuring out that when their epileptic patients ate a low-carbohydrate, high-fat diet, their seizures lessened or went away all together. Though the diet lost its pizzaz during the middle part of the last century, there was resurgence of interest and research on it during the early 1980s, and now it is widely accepted as a treatment option for children with seizures that cannot be controlled by medication. When a child follows this no-carb diet, their body utilizes fat for an energy source. When the body breaks down fat, ketones are released and ketones are a natural anti-epileptic. Research has shown that 50% of children who try the diet for 2 years will not have any seizures after the diet period is completed. Somehow because of the diet, the brain literally forgets how to have seizures.

The diet is kicked off with a hospital stay, during which time a dietician and neurologist slowly start the patient on a high-fat, zero carbohydrate diet. Sound familiar? The patient is hospitalized during this time, though, because some patients don't handle the diet well, and it also allows the dietician to calculate and create recipes for the patient to follow at home.

This ain't your husband's Atkins. And it certainly isn't homeopathic. This is a medical diet.

There are some risks and concerns with the diet. One of the major ones is that when you are in this high-fat, low-carb state for months on end, the body becomes acidotic. This means that the pH in the body changes to an acidic state, and you can actually have degradation of bones. When your body excretes this calcium, kidney stones can form. Fun!

Because of the lack of nutrients that come from carbohydrate-rich foods, you meet regularly with a hospital-based dietician weekly for blood work and to adjust your intake of nutrient supplements of vitamins. Awesome!

Daily food intake is strictly regimented. No snacking. The child often feels hungry and cranky, though their calorie intake is being met. The diet is easiest with children who are solely fed via g-tube formula. For kids who eat by mouth (like Will), food must be measured to the gram before being served. I am actually nervous about this... we are sleep deprived folk. How good would I be measuring a kitchen scale when I mistake ranch dressing for coffee creamer in the morning?

This isn't something to be taken lightly. But the results can be great. A life with no or very few seizures medications, no surgery...

The main components of the diet are cream, oil, butter, eggs... you know, all the stuff that most of us try to limit. The recipes in some of the books on my bed side table would make you feel sick to your stomach with their richness.

Before Will got his g-tube, we were desperate to increase his caloric intake. We used to mix heavy cream in with his baby food fruits and oil in with his baby food meats. He responded with swift and passionate vomit. On every occasion when we fed him this doctored food. He just does not tolerate high concentrations of fat well. And the basis of the ketogenic diet is high concentrations of fat.

We still have a lot of discussions to plan before we decide whether to do this diet. It is a serious commitment. Concurrently we are having conversations about epilepsy surgery. After talking with physicians, weighing options, etc. we have decided to pursue surgery at Johns Hopkins in Baltimore, close to where I grew up. We have an initial consultation in early March. Until then, I'm hoping to dig my way through this stack of books and maybe catch up on something a bit less cerebral. A Nicholas Sparks novel sounds like a little bit of mama heaven to me right now.

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