AFTER, February 8, 2006: The Miracle of Ordinariness

There’s nothing in my date book for February 8, 2006, so I guess it was just an ordinary day. So boring you’ll probably fall asleep right now just reading about it. My 6th grader, Joe, hopped on the school bus about 8 a.m. I probably did some grocery shopping, and went to my class. At the end of the day, Joe came home and had some buffalo wings before starting his homework. I think that might have been the day he started his report on ancient Egypt. No drama in that, is there? Compared to what we’ve been through the last eight years, our lives are now a miracle of ordinariness.

Thanks to the Atkins diet.

I hate a suspense story with children in it, so that’s why I’m starting with the ending: our son Joseph has been seizure-free for one and one-half years on the Atkins diet. I’m knocking on my wooden desk as I type this. Epilepsy can be capricious, so we enjoy this one day at a time.

Joe no longer takes any medications, either. For us, that’s as significant as being seizure-free, because sooner or later Joe had unlivable side effects with every medication we tried (and we tried most of them). Not only that, he basically no longer has the subclinical activity which was a constant presence on his EEG when he was on medication, even when he was seemingly seizure-free.

Joe is enjoying an explosion of social, intellectual, and academic growth that once we only dreamed of for him.

BEFORE, February 8, 1998
Entering the Fun House that is Epilepsy

I vividly remember the exact moment we got on this carnival ride. I had to pinpoint the actual date later, but, with cinematic vividness, I remember every detail. (If your child has seizures, you have your own movie clip you drag out and play in your head.)

I am sitting in a McDonald’s in Manhattan, watching my then-4-year-old, tousle-haired boy, Joseph, have a snack of French fries. We are around the corner from his father’s restaurant, happily waiting to greet him coming back from a business trip. As Joseph reaches to dip a fry in ketchup his hand drops, covering his little fist in ketchup. Curious. Then it happens again. And again. And again.

Within 3 days Joseph is having “head drops” and “hand drops” (or myoclonic seizures, as we now know them) at the rate of about 5 - 10 per minute, thousands per day, basically a status state. Perhaps it’s good that we don’t even know yet how frightened we should be. Even with the thousands of seizures per day, Joseph is still himself, chatting through the head drops, trying to draw even though his hand drops constantly. It’s hard for him even to drink: he’s seizing so frequently that the liquid rolls out of his mouth before he can swallow it.

We see the first pediatric neurologist who will take us. Unfortunately, he is not an epileptologist, since Joseph isn’t diagnosed yet. We have our first EEG, and get a prescription for our first anticonvulsant: Depakote. When we get home I break open a capsule and mix it with a spoonful of chocolate pudding. Joseph takes it surprisingly easily.

I don’t yet know that he will have strong reactions to almost every medication we try, so I pile Joseph into the stroller and take him across the street to the grocery store. As we meander through the store, he starts to feel the effects of the drug. He begins to scream and cry unbearably, as if he’s being tortured. He’s writhing and pulling at his clothes. He tries to crawl up, up, out of the stroller, reaching frantically as if he’s trying to crawl out of his own body. I haven’t expected this (isn’t modern medicine supposed to fix everything seamlessly?) and now I’m panicked. I call our neurologist and am assured that this is a temporary reaction.

In a way he’s right. Over the next couple of days Joseph has this same harrowing reaction whenever he takes the Depakote, but it gradually starts to subside. However, our funny, quirky, chatty son disappears. In his place is a boy whose hyperactivity borders on mania. He finds it almost impossible to sleep, and takes to jumping on our bed at 1 a.m. He laughs an awful, hysterical laugh, and is prone to rolling around on the floor uncontrollably. He’s aggressive and hits—something he’s never done before. He can’t focus or participate in school. It’s like he’s become someone else. The spirit of Joseph as we knew him had disappeared, leaving only his body behind.

We’ve entered a kind of nightmare version of the Fun House, a disorienting place where things seem familiar and yet are completely wrong, and where the way out can seem to be right in front of you and then suddenly disappears.

Don’t get me wrong. I’m grateful for modern medicine and pharmaceuticals. I know that plenty of kids benefit from drugs, but that was not the case with Joseph. When epilepsy stole our son, it co-opted a partner: anticonvulsant medications.

This is just the beginning. We’ll wander through the Fun House for close to eight years, layering on the medications, and trying to find our way back to the child we once knew.

THE 8 YEARS IN BETWEEN
Wandering through the Fun House, and How We Got Out

The drugs we tried, for varying lengths of time were:

Depakote
Klonopin
Tegretol
Topamax
Diamox
Lamictal
Zonegran

Sparing you the gory details, Joe eventually had negative reactions to them all, sometimes within hours, and sometimes as a cumulative negative effect after several years of use. Side effects included (in no particular order) extreme hyperactivity, grogginess, tics, zombie-like behavior, weight gain and bloat, inability to focus, aggression, rages, learning problems, insomnia, increased seizures. All of these side effects drastically lowered Joe’s quality of life and learning abilities.

Joe Does the Ketogenic Diet

When Joe was 5 we initiated the ketogenic diet at Columbia Presbyterian Hospital. At the time he was on three medications (Depakote, Klonopin, and Topamax), and was so medicated he could barely tell you his name and was still having seizures. Joe went into ketosis the first day and dramatically his seizures stopped.

He was on the ketogenic diet for 2-1/2 years. However, we spent the entire time weaning him from his medications (Klonopin alone took 1-1/2 years). In the end he lost too much weight, and we once again went back to medications (Diamox and Zonegran together this time). We knew that Joe had experienced good success on the diet, and that someday we might try it again.

The Atkins Diet!

That day came after two years on the Diamox and Zonegran. Joe’s learning was being impaired by the medications, and he started having breakthrough seizures. In the hospital at NYU Medical Center, our doctor removed Joe’s meds cold turkey to try and induce seizures to pinpoint more closely where they were originating. Joe didn’t oblige by seizing on cue, but we seized the opportunity to try the diet once again with the advantage of not having medications to cut. This time we wanted to try a modified version of the Atkins diet, which would be more palatable and less restrictive than the ketogenic diet.

I’ll always be grateful to our neurologist, who trusted us enough to let us take our son home med-free. We were never so nervous. For at least a month I lived from meal to meal, worrying what my son would eat next.

We started Joe on approximately 25 - 30 grams of carbohydrate per day, with unlimited protein, trying to encourage the use of fats (although he doesn’t really like cream or salad dressings.) Fortunately, Joe loves meat. At first he lived on cheeseburgers (without the bun), chili (with only a spoonful of beans), hot dogs and mustard (again no bun). In fact, these things still feature prominently in his diet. Dessert was usually iced-decaf coffee with sweetener and as much cream as I could get him to drink.

During the first couple of weeks on the Atkins diet Joe experienced a handful of seizures, as his body adjusted to the medication withdrawal. Since then he’s been seizure-free, and to our neurologist’s (and ours, of course) delight, his EEG is about 99% “clean”, or free from subclinical activity.

Gradually, over the course of the last 1-1/2 years, we’ve increased the amount of carbohydrates Joe gets per day. He eats in the range of 90-100 grams per day now, which allows him some fun carbs throughout the day: low-carb bread, a little brown rice, a few French fries, or a heaping bowl of soy pasta, and probably a commercial sugar-free cookie or candy. Now we use some of the commercial sugar-free products, but during the first 9 months - 1 year we steered away from these, and made our own ice creams and low-carb baked goods.

Typical for his age, Joe’s taste veers towards cheeseburgers, Buffalo wings, or pizza (he eats the cheese and toppings only.) But for someone with more varied tastes, there is a huge array of foods that could make the diet palatable such as seafood and sugar-free cheesecakes!

Yes, the diet is hard at times. If they came up with a medication that could give us the same results without the side effects we’d use it in a heartbeat.

Joe is justifiably proud of how he’s handling the diet. He hates the thought of having seizures, and I don’t think there’s any food that could tempt him enough to make him risk having them again. We’re in a groove we can all live with for the foreseeable future, and I’m pretty sure he doesn’t feel too deprived.

I don’t think he gives it much thought at all, actually. He’s too busy hanging with his friends, making art, playing video games, and living the life of a typical pre-teen.

Considering where we’ve been, that’s a miracle.

Resources

Zambetti’s Low Carb and Sugar-Free Center
196 South Main Street
New City, NY 10956
845-634-2553
Jacqueline Maffei, owner

The greatest product at this store is their low-carb, high fiber bread, hamburger buns, and rolls, although they carry a wide range of products. The bread is chockfull of freshly ground flax seed, is delicious and satisfying, and low-carb enough for most Atkins dieters, although probably not for the ketogenic diet. They’ll ship the bread nationwide, via FedEx.

Kirkman Laboratories
800-245-8282
www.kirkmanlabs.com

This maker of vitamins and nutritional products also produces a sugar substitute called No Sugar. Zero carbs and holds up well in baking (no funny taste). Will ship. Currently No Sugar is not listed on their website, but they still have it. Ask when you call.

Websites

• www.lowcarbluxury.com/lowcarb-recipes.html

There are many websites on the internet for low-carb recipes, but I think this is one of the best.

Favorite low-carb cookbooks

1. Low-carb Vegetarian, by Celia Brooks Brown
   Yes, I know that a low-carb vegetarian would seem to be a contradiction, but this book has great ethnic recipes (Thai- and Indian-influenced) and awesome desserts. For people who want some spice in their low-carb diet.
2. Everyday Low Carb Desserts, by Kitty Broihier
   Yummy desserts, cheesecake and beyond.


3. The Low-Carb Baking and Dessert Cookbook, by Ursula Solom
   Great resource for those who miss the smell of baking in their house, and are ambitious enough to do it!


4. 500 Low-carb Recipes, by Dana Carpenter
   A low-carb classic.

For low-carb recipes by Susan Littlefield and Mark Straussman (Owner and Chef of Fred’s at Barney’s New York and Coco Pazzo)go to: http://www.epilepsy.com/epilepsy/atkins_recipes.html