Watch Video | Print | Close

Rose's Story

Rose
quote from Rose

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

Rose: My name is Rose. I'm 14 and I'm a freshman in high school. I've had epilepsy for about three years. My seizures are petit mal seizures, which is just like maybe a fluttering of the eyes or a blank stare. It affected me socially 'cause, like, if I was talking to my friends, I could have a seizure and then I could just completely lose track of what I was saying.

Rose: Wait, didn't you guys want to do the little cartwheel/handstand competition kind of thing? Alright.

Kathy: She was self-conscious. She was fearful of, you know, having those seizures and being aware of it, and even as a teenager, you're worried about fitting in, being the same as everyone else, and to see her just not really be who she is was hard to see.

Rose: One, two...three!

Rose: The first medication that I ever took made me throw up, so we had to change that.

Kathy: The second medication produced a full body rash, which was a danger to her, and then the third medication had an impact on her cognitive skills, and we saw a decrease in her cognitive skills. It was affecting her grades and really wasn't even controlling her seizures as well as we had wanted it to.

Elizabeth Thiele: The goal in treating children with epilepsy is zero seizures, or complete seizure control, and zero medication side effects. In Rose's case, we hadn't been able to reach that goal. So we talked with Rose and her parents about her other treatment options, including dietary therapy and the possible surgical interventions we could consider for her seizures. And after thinking about it and talking about it, Rose decided to try the diet.

Rose: The treatment that I'm currently using is a combination of medication and the low-glycemic index diet.

Heidi Pfeifer: Low-glycemic index treatment came about as we've had a lot of adolescents that were unable to deal with the constraints of the ketogenic diet, as it is very rigorous for the families to follow.

Rose: I definitely couldn't do the ketogenic diet, no way.

Thiele: The low-glycemic index diet is much easier to implement than the ketogenic diet. It's not as restrictive. The children are not following specific prepared, calculated meal plans that require weighing of food. Children can go to restaurants and just order appropriate foods. They're simply choosing foods based on the glycemic index and judging their portion size. So it's much easier for the child and for the family.

Kathy: Make sure you guys wash that and dry it.

Kathy: Dr. Thiele thought we would have more success with the low-glycemic diet. She just knew we had a big family, I worked full-time, Tim worked. She couldn't foresee me weighing every item or Rose weighing every item just in a hectic day. So she thought that the low-glycemic diet would have a little bit more flexibility for our family, which it does.

Pfeifer: The low-glycemic index treatment is based on the fact that every food has a glycemic index and that's how high it raises your blood glucose level. So things such as cookies and candies are going to have a high glycemic index, versus things like whole grains and fruits and vegetables have a lower glycemic index.

Pfeifer: So their focus is on the total amount of carbohydrates per day, limiting to approximately 40 to 60 grams per day from food sources that are low in glycemic index.

Rose: For lunch I usually have a low-carb pita bread with natural peanut butter on it, grapes, some cashews and a diet soda.

Kathy: She has to avoid, of course, starches, potatoes, rice, bread and sweets. And even some root vegetables she can't eat, and a lot of the tropical fruits she is unable to eat, in terms of their glycemic level is so high.

Rose: For dinner maybe chicken or some sort of meat dish with a salad and...maybe a glass of milk.

Family: O Lord, and these, thy gifts which we are about to receive...

Rose: It's sometimes really hard on my brother and sisters, because they can't have what they want so they have to settle for what I can have.

Rose: Is this the same kind that you made the other night? I like it.

Kathy: When we started the diet, the kids all complained. And they didn't really blame Rose, but they did. So everyone has had to make a sacrifice. Actually what's happening, though, is people are starting to get used to this diet, and they like the natural peanut butter. They like the low-carb bread.

Tim: And as usual, in honor of Rose, I'm not going to have any pilaf.

Kathy: Does anyone want milk?

Rose: Thank you, Daddy.

Tim: I liked letting the other kids know that we're making a sacrifice for Rose. Lots of times I'll say, "In honor of Rose, I won't eat rice," you know. And that makes her feel good.

Kathy: When she's out, she has to be very careful about what she picks to eat and we have to hope that she makes those right choices. And we're relying on her. I don't worry about Rose doing drugs. I don't worry about Rose drinking. I worry about her eating carbs. I mean, that's...that's my worry.

Rose: Those are gross.

Rose: I miss them.

Rose: You always get those.

Friend: I know, I know.

Rose: When me and my friends go down the street to the store to get like snacks and stuff, it's really hard for me, because there's always tons of junk food that you just want to be like, "Oh yeah, I'm going to grab this, pay for it, buy it, eat it," and you just like "No, I'm on a diet. I've got to stick with this if I'm going to get rid of all my seizures." And I usually tend to go to where the drinks are and I get a diet soda.

Tim: When she doesn't stay on the diet, we see the seizures more often.

Rose: The big lesson is, if you cheat, you're going to have to pay for it, and the price is seizures.

Thiele: While the low-glycemic index treatment still needs to be validated in other centers--that means other centers using the diet and having the same results that we have seen--we're very excited that this can be a very effective treatment. We've found that it works extremely well. And probably close to a third of the kids we have put on it have had at least a greater than 90% reduction in seizures, if not become seizure free.

Tim: Almost immediately, the seizures really were diminished significantly. They're still there on a minimal scale.

Rose: Before I was on the diet, I would have maybe like 20 seizures on average a day, and now that I'm on the diet I might have one seizure a week. So it's an incredible difference. I'm now doing really good in most of my classes, because the seizures aren't interfering with any of my schoolwork. It's definitely changed me, because I now look at myself and see that, I mean, I mean, I know that I can do this. I mean, I have to put my mind to it and just work on it, but it's definitely worth it.

Kathy: It's just nice to see Rose again. That dynamic personality sometimes was subdued. She's who she is again, and I'm grateful.

Rose: (singing) I'm in a terrible fix...

Rose: Once I graduate high school, I've kind of been thinking I want to be an actress. The spring musical that I was in was "Joseph and the Amazing Technicolor Dreamcoat," and my mom said that she didn't have to worry about it one little bit.

Rose: (singing ): I can't resist a Romeo...

Rose: I used to worry about having a seizure during the play. Now I just have to worry about knowing the dance steps and knowing the songs.

Rose: (singing ) I can't...say...no.

_