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Evan's Story

Evan
quote from Evan

This is a transcript of a video from the Growing Up with Epilepsy Web site. For more information visit http://www2.massgeneral.org/childhoodepilepsy.

Evan: My name is Evan, and I am nine years old. I am second grade in school.

Teacher: So, how many across?

Evan: Nine.

Teacher: Good, go ahead and do it.

Evan: One, two, three, four... five.

Evan: My favorite subject in school is math.

Evan: Seven, eight...And I like to play basketball.

Evan: Doh!

Jeff: Evan started having a couple of seizures before he was one year old. At the age of about 2 1/2 to 3, he started to have a seizure periodically, once every six months. And then they became more frequent, until they started to become daily. He started on medication. Things got a little bit better for a while there on some of the medication. Then things started to get progressively worse over the years, 'til they started to work up to about 40 to 50 to 60 seizures a day that we were counting.

Evan: A seizure is like...a hiccup, but different. A hiccup is in my brain.

Jeff: He would have the grand mal. He would have drop seizures. He would have stare seizures.

Jynell: I think the worst thing for me was the unknown, as to how many he was going to have a day, if he was going to get hurt, what types he was going to have, how it was going to affect him in school, his learning. That was really hard for me.

Evan: My parents feeled kind of scared. It made me very scared.

Jynell: He was on three high-powered meds. We were really at our wits' end. It really put a damper on his development in school. We felt like he was not moving on to some of those milestones that you hit when you're three and four or five. So we decided to seek out our second opinion and say, you know, "Listen, is there anything we can do?"

Elizabeth Thiele: When a child has been on a few medications without complete seizure control, then it's an appropriate time to start thinking what other options does the child have, because there are some children the medications never prove effective, for reasons we're not really sure of. And those options would include dietary therapy for epilepsy and surgical therapy for epilepsy. With Evan's seizure type, we knew that the resective epilepsy surgery was not really a good option for him, so it came down to dietary therapy or the vagus nerve stimulator, and his parents and we agreed, decided to try the ketogenic diet.

Heidi Pfeifer: The ketogenic diet is a medical nutrition therapy that we use for treatment of intractable epilepsy. The diet is very high in fat-- approximately 90% of the calories come from fat-- and then low carbohydrates, but with adequate protein for growth and development for the children while they're on the treatment. When children initiate the diet, they are admitted to the hospital for a three- to four-day stay.

Thiele: What we have been doing prior to the admission to the hospital is starting to adjust the children's diets, taking out some of the carbohydrates, kind of to make the child get ready for the restrictions in their diet and slow, steady change, rather than an abrupt change in diet.

Jynell: Jeff, could you cook the chicken, please?

Jeff: They told us to start converting him over to get him away from milk, get him away from carbs, get him away from sugars and stuff. So we immediately switched over to heavy cream; we switched over to bacon. Within four days of us starting the modified diet, the seizures stopped. They went from 50 to 60 a day down to zero within four days.

Jeff: Got it.

Evan: Awesome.

Thiele: Now, that's not typical. Many children, while they're starting the ketogenic diet, might even have an increase in their seizure frequency or no change in their seizure frequency. But we do...have seen other kids like Evan who, when starting the diet, have a decrease. So when we're talking to families and educating them what to expect when starting the ketogenic diet, we tell families that we give it typically about a month to see how effective the ketogenic diet will be for their child's seizures.

Pfeifer: During their hospital stay, they have education every morning for about two hours or so in which we go through their individualized treatment programs. Each child has their diet calculated to their individual calorie needs, making sure that they're getting their protein needs to grow and develop and we go through all their menus that they're going to be using while they're on the diet.

Jynell: When we came home from the hospital, it was very time consuming to really get a grasp on what to do. But, I think, over time you get to the point where you can really whip it out pretty fast. We measure to the gram on the diet, because Evan can only have so many calories a day. Every three months, we would go to the doctor and she would make adjustments to his ratios. If Evan is saying he's hungry a lot, we realize he's growing and that we need to make adjustments so that she would up his calories.

Evan: My favorite meal is chicken, fruit and mayonnaise.

Jeff: Evan loves the food. Evan can't get enough of the food.

Jynell: We all talked about it as a family, and we basically explained to him it was hopefully going to help him not have seizures. And he knew, he understood. He went through all the seizures; he knew what it was like. He never, never steered clear of what, you know, what we gave him. And I just think he's amazing for that.

Evan: No, Dad, don't grab that.

Thiele: The ketogenic diet is actually one of our oldest treatments for epilepsy. Since it was developed in the 1920s, we have over 80 years of experience with it. From the 1920s to 2006, of all the children who start the diet, about one-third become seizure free. If the child then becomes seizure free, we wait a period of time, typically a few months, and then begin reducing medications with the hope that we can taper the child off all of the medications and then continue the diet.

Jynell: Okay, Evan, dinner's ready.

Jeff: Taking him off the meds happened about six months after. That was probably the scariest part of the entire diet. We went very slow. It took several months to go off. He was on three medications when we started the diet. It was frightening. We were always waiting for the second shoe to drop. But Evan's been seizure free for three years on this diet.

Thiele: Many people also ask, "Well, how long will my child stay on this diet? Will it be lifelong?" And it is not.

Evan: When am I going to be off the diet?

Jeff: About another six weeks...four to six weeks.

Jynell: The last year we've been weaning him off slowly, and we have about six weeks left, so we're very excited. Once again, we're very nervous.

Thiele: As children wean off the ketogenic diet, I think the families experience several emotions, and they're anxious that the seizures may come back. There's also the significant anxiety that they won't really remember or know how to feed their children healthy normal diets. So Heidi, our dietician, works very closely with families, helping reeducate them how to feed their child as a normal child not on this diet.

Jynell: What are you going to eat when you're off the diet?

Evan: Pizza.

Jynell: What else?

Evan: Ice cream bars.

Jynell: Ice cream bars--whoa.

Pfeifer: Evan's getting closer to a regular diet as we think of it. We're still keeping all concentrated sweets out of his diet, but increasing the carbohydrates--things with whole grains, as well as fruits and vegetables, as well as increasing his protein sources.

Evan: I don't have seizures anymore. It feels kind of... healthy for me.

Jeff: You going to walk with us? You're not going to run down the dock?

Jeff: It's like night and day, when he used to have seizures, compared to now that he's seizure free. It would take him five minutes to walk across a simple 16-foot driveway. He was very lethargic; he would have a seizure and he would be out for an hour or two right after.

Evan: I climbed up there and my feet were all, like...

Jeff: Now that he's not having the seizures, he's creative. You can see his mind just go a mile a minute. He wants to do more. And it's almost like his words can't keep up with what he's thinking.

Evan: Before I knew it, I grabbed on to these...

Jeff: That's good.

Evan: And I pulled myself up and I got here.

Jeff: Did you catch any crabs that day?

Evan: Um, no.

Jeff: I would tell a family that's considering the diet that success isn't measured from going from 50 to 60 seizures a day down to zero. If Evan went from 50 to 60 a day down to 20, down to 40, I would have considered that a success. We just happened to be one of the lucky families that he's off the medicine and he is seizure free.

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