One Family’s Commitment to Epilepsy Research

EpilepsyUSA: How did you get a diagnosis of epilepsy for Shannon?

Janet: I was talking to my girlfriend on the phone, who was a nurse, and I told her Shannon was acting kind of strange. We had been treating her seizures for 24 hours with apple juice thinking she was constipated. That’s how naïve we were. My girlfriend said, “You should call your pediatrician.” I asked why and she said, “Because it sounds like she could be having some type of a seizure.” I said, “What?” because the word “seizure” was so stigmatized to me at that point. The only person I knew growing up who had seizures was isolated and just not a part of anything. I thought, “Oh my God.”

EpilepsyUSA: As a mother did you feel scared or worried or all of the above?

Janet: I was scared to death. I was flashing back to the only person I had known who had seizures and she was stigmatized and isolated in school. We called the pediatrician and brought her to an emergency room at a local hospital. They ran some tests, which were not very effective, and we spent the night there. Then the next day—which happened to be Thanksgiving—we transported her to Boston Children’s Hospital where they ran all kinds of tests. That’s when we got the diagnosis of epilepsy. By then her seizures were coming every couple of minutes, non-stop.

EpilepsyUSA: How did you react to her diagnosis?

Janet: We were devastated, absolutely devastated. At that point our world changed completely. For the next several years we were constantly in and out of the hospital, trying to find the right regimen of medications. She was so wiped out on meds that she couldn’t even function. She had regressed completely because of the meds. The hardest part was there was never an answer as to why this happened to a perfectly healthy, beautiful baby. To this day, 19 years later, we still do not have that answer.

EpilepsyUSA: What was the course of Shannon’s treatment?

Janet: There was the hope that maybe she would grow out of it. She was having hundreds of seizures a month. Her quality of life had completely gone down the drain. Our quality of life as a family was going down the drain as well. We tried everything. We did some testing to see if she would be a candidate for brain surgery and they went in and put the electrodes on her brain. We were so hopeful because all the prior testing indicated her seizures were localized to one area. But after a week with the grid on her brain, they came back and told us they were not getting consistent enough readings and now they wanted to open up the other side of her head and put the grids on the other side. They opened up the other side of her head and we ended up staying in the hospital for a couple of months.

We were so hopeful, but they did not get the readings they wanted and so they were not able to do the resection. It was all for nothing. When Shannon looked in the mirror she saw her head all shaven up and these big, huge scars were on her scalp she was totally devastated. So my husband brought in an electric razor and sat on the bed and allowed Shannon to completely shave his head bald.

After that we just kept trying. We tried medications from other countries. We tried the ketogenic diet three times. She ended up in the ICU unit all three times fighting for her life. We brought her to Chinese herbalists. At one point we were doing light therapy thinking that if we extended her daylight that would help. We tried everything and felt frustrated we couldn’t do anything to help her.

Watching a child have a seizure is probably the most hopeless feeling in the world for a parent. We realized we were going to have to focus our anger and energy into trying to come up with a better way. That’s when we decided to focus on fundraising and pumping money directly into research.

EpilepsyUSA: You organized a golf tournament, right?

Janet: We started with a golf tournament. It ran very successfully for 10 years. Then after that we started with the dance that we’ve held for the past 7 years.

EpilepsyUSA: How is Shannon doing now?

Janet: Well she’s 21 years old. The older she gets, the harder it gets with all the typical things as far as driving, dating and a social life. But it’s been Shannon’s determination that has kept us going. She is at a life skills vocational program in the Berkshires right now. She was making a speech to all the students and had a seizure right when she finished the speech—in front of everybody—but she got up and dusted herself off and continued. It’s her determination that has been our inspiration. She won’t let this illness beat her down, so we’re not going to let it beat us down.

EpilepsyUSA: What do you think is the most important way to erase the stigma that surrounds epilepsy?

Janet: Just talking about it and awareness. We have never hidden it. We have always been very open. Everyone in our town and in her school has always known Shannon has seizures. We’ve never wanted her to feel the shame and the embarrassment we know a lot of others have felt. We try to keep her life as normal as possible.

EpilepsyUSA: What would you say to another parent whose child has just been diagnosed with epilepsy?

Janet: I would tell them not to let this disorder beat you down and to try and live as normally as possible and reach out for the support of friends and family. I would also say: Take some time for yourself, too. It’s very easy for us to hover over our children because of the constant worry. Just embrace the good times because you just don’t know.

EpilepsyUSA: What kind of treatment is she on now?

Janet: She currently has the vagus nerve stimulator (VNS).

EpilepsyUSA: How is that working?

Janet: I believe it’s helped reduce her seizures from 100 a month down to a few a month. She still has seizures. She is still on a ton of medications. I’d like to know what her life would be like without all the medications. I’m concerned that she has been on these medications for 19 years and worry about what they might have done to her liver and kidneys.

EpilepsyUSA: Why is it so important to raise funds for epilepsy research?

Janet: Our main point when we started fundraising was the feeling we had of not being able to help our daughter. We thought this was the only thing we could do. If we could pump money into research, then we could try to get some better treatments. We thought it might help Shannon and others as well. That was our motivation and goal. We started fundraising because we felt helpless.

EpilepsyUSA: Has fundraising made you feel better?

Janet: It has made us feel better. It’s very satisfying and I think it makes Shannon feel better to see us doing it year after year.

EpilepsyUSA: How is Shannon doing now?

Janet: She’s in a program in the Berkshires, which is 21/2 hours away from us. It’s a big step. It’s a life skills program where she learns to take her medications and live in an apartment. She also takes career classes. She’s very proud and excited to have this independence because that’s what she has always fought for—her independence.

EpilepsyUSA: How do you account for the fact that she’s so positive and determined?

Janet: I hope it’s because we always have been open about it and we’ve been doing fundraisers. We’ve always tried to allow her to spread her wings.

EpilepsyUSA: Overall, how has epilepsy affected your lives?

Janet: I have to say I have met some of the most incredible people in the epilepsy community—along with some of the most amazing doctors and nurses. It’s humbled our lives. We appreciate more, we don’t take anything for granted.