As a result of her daughter Lydia's diagnosis of epilepsy, former book-editor and writer Camilla Becket realized that more than a book to read about the disorder, what she actually needed in this case was a film. ”I was in such a state of anxiety, that I found it impossible to read any of the books that were out there,” she said. “I wanted a film with quick information and I wanted to see and hear from real parents and doctors, being honest, telling you like it is. So my husband and I collected insights from experienced parents along with advice from some of best doctors in the field. We put the essentials that we learned into a film. Our hope was to help parents and caregivers in the same situation as we were in at the time.”

How did you feel when you heard the diagnosis?

At first we went into denial: Lydia seemed so perfect—not only was she hitting her milestones on time or early, but she glowed with good health, was energetic and happy. Then the seizures began increasing in frequency and we went into a panic.

What were your initial questions and fears?

Quite frankly our biggest fear at first was that she would die! Once we calmed down a little we began to worry about brain damage, the effects of the medication on her delicate system, and what were we looking at in terms of long term prognosis.

What supports did you have to help you adjust and understand?

We had few at first. There were plenty of people to report to—friends and family were all very concerned—but we knew no-one who fully understood the condition. And as is typical these days, our doctor appointments were always too short, so we always left with more questions than we’d had time to ask.

This is a deeply personal film. Without this education, without learning what you have come to know, how do you think your child may have been affected?

I think the biggest lesson we learned as a family is that although a diagnosis of epilepsy can be fairly straightforward, a diagnosis of the type of epilepsy is quite often a challenge. This is of paramount importance because the wrong medication for the wrong type of epilepsy can make the seizures much worse. We found this out way too late: When Lydia’s condition deteriorated, we should have insisted her doctors—and the doctors we consulted for a second opinion—go back and revisit her EEG.

You talk about the benefits of encouraging your child's unique interests and talents. What is your advice to parents, teachers, family, and friends?

From our experience, many children with epilepsy have learning disabilities such as dyslexia, attention-deficit hyperactivity disorder (ADHD), fine or gross motor problems, that kind of thing. We live in a world that defines success in terms of productivity—for a kid that means success in the classroom or on the sports field.

Lydia does not excel in either of those two areas but she’s extremely creative, she’s a wonderful friend, and she’s great with animals. Special needs kids need to be constantly reminded that value comes in all shapes and sizes, and how they personally are creating good in the world.

How does advocacy help erase the stigma or are the two still mutually exclusive?

Advocacy can mean anything from lobbying your congressperson for health care reform, ensuring that your child gets a “free and fair” education at school, or teaching friends and family about seizure first aid.

At the very least it requires you to not hide away from your child’s diagnosis. We have always been open about Lydia’s condition—therefore so has she—and so I can honestly say that to date we have never had a problem with prejudice. Having said that, it has been years since she had a seizure in public. Lydia is now 9 years old. She recently had an ambulatory telemetry and had no qualms about showing the wires on her head to her friends next door. They were genuinely curious; she was genuinely proud.

How does one help a child with epilepsy speak for himself or herself?

This is really difficult because, especially for a child who has generalized seizures, there is no conscious experience of what it is like. Lydia knows she has epilepsy, and what her seizures look like only because we have described them to her. It’s very much in the abstract.

However, she does have to deal with dietary issues related to epilepsy. Her seizures were first controlled with the ketogenic diet, and nowadays she is following an Atkins type protocol. So there are many foods that kids normally eat that she’s not allowed. When people ask her why she is refusing the ice cream and cake, she tells them that she is on a special medical diet because she has seizures. If they want to know more, she refers them to us!

How has your husband helped in bringing about awareness?

Jim is an award-winning documentary filmmaker and is adept at interviewing people on what can often be very personal and sensitive subjects. He helped to clarify our goal for the film: To help parents with the information we wish we’d had from the gitgo. That is, to speed up the learning curve, which is considerable.

In terms of making the film together, we found ourselves constantly negotiating a balance between practical information and emotion — and I think in the end finding that balance has been good for the film. I was more on the information side, because as a mother, the sight of sick children can be very upsetting. I wanted to help our viewers, not traumatize them! Jim, on the other hand, wanted to include the more emotional footage, because that is the reality of living with this disease. So you get to know, and to relate to our subjects, while learning valuable lessons from what they have been through.

Are there any other films on epilepsy in the pipeline?

Yes, we are working on Diagnosis Epilepsy: Now What? Epilepsy in Adults. This video will address issues particular to newly diagnosed adults. What next? What are the options? How will life be affected by this diagnosis? We've talked to leading epilepsy specialists, Epilepsy Foundation representatives, and many adults and their families living with epilepsy. The film will explain and illustrate different types of seizures, diagnostic procedures and various treatment options, including medications, surgery, the vagus nerve stimulator, and even alternative/complementary therapies.

In addition, this film will look at the impact of epilepsy on cognition and function; managing a seizure disorder at work; safety; driving; epilepsy in the family and community; stigma; depression; the importance of advocacy, and services provided by the Epilepsy Foundation. Our expected release date is 2008.

Editor’s note: Becket Films is defined on their website.

“We are a group of award-winning filmmakers and our passion is to make superior quality non-fiction films. This means that if you don't have time to read a 350-page book, our films offer you a concise, credible—and compelling—documentary illustrating the basics about what you need to know now.” As a result of her daughter Lydia's diagnosis of epilepsy, she and her husband Jim collaborated on their first project together, and Camilla has since co-produced, co-directed and/or edited several non-fiction films. In 2007 she won her first Telly Award.”

Childhood Epilepsy is available through their website.

Edited by Steven C. Schachter, MD