Epilepsy Awareness Month: Interview with Cathi Shaw, Caregiver

I first met Cathi three years ago when we attended our first Epilepsy Awareness Day at Disneyland. She was there with her daughter, Cait, and Cait’s friend Dan Nixon.

Cait and Dan were fifteen when they formed the Epilepsy Awareness Squad. The mission of this squad? Why only “eradicating the rumours and stigma about epilepsy from the face of the earth.”

Robert with Cait and Dan
of Epilepsy Awareness Squad

Oh my goodness! How could you not love these guys? Their drive and ambition to help others were amazing. (Or, excellent as Robert would say.) They shared Robert’s story on their website and treated him like a rock star when we met at EADDL.

There is no way Cait and her friend, Dan, became such exceptional young adults without a little help from their parents along the way. I loved meeting Cait’s mom, Cathi, and was even more impressed when I found out she was an author!

I would love to have a cup of coffee with Cathi and the next time she is at EADDL or I am in her neck of the woods we will have to be sure to make that happen. For now, please join me in learning a bit more about Cathi and her daughter, Cait.

Robert’s Sister:  Tell us about the person you are caring for.

The person I’m caring for is my 18-year old daughter, Cait Shaw.

Robert’s Sister:    When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

Cait had her first seizure when she was two years old. She was very ill with a viral infection and in my arms when it happened. Because my own mother has epilepsy, I realized that Cait was having a seizure immediately and we proceeded to the Emergency Room of our local hospital. But because it was her first seizure, she was very young, and she was ill at the time, the ER doctors suggested that it was likely a febrile seizure brought on by the illness. Some children are prone to seizures when they have a fever, and so, for the next three years we operated on that assumption.

But that all changed when she turned five years old. That year, Cait started having tonic-clonic seizures and they were random. We were soon referred to a neurologist at BC Children’s Hospital and he suggested that she had a seizure disorder. As the year progressed and she had more seizures, it became clear that Cait did have epilepsy, just like her maternal grandmother. Still we were reluctant to put her on medication. Epilepsy meds are extremely strong and the side-effects can be worse than the seizures themselves. So we took the “wait and see” approach but in December of that year Cait had 14 seizures in one day, was hospitalized and put on medication to stop the convulsions.

Cait, Cathi and Cathi's mom

Robert’s Sister:  How did you feel when your loved one was first diagnosed with epilepsy?

I think for me it wasn’t as bad when she was first diagnosed because my mother had epilepsy as well and had lived a fulfilling and productive life. She was a career Registered Nurse, had a happy marriage, had children of her own and drove her car. So I knew that epilepsy would be something Cait would have to deal with her entire life but I wasn’t overly concerned. I saw it as a manageable condition.

  

Robert’s Sister:  Did your family treat your loved one differently after the diagnosis?  If so, how?   

Because Cait had reactions to all the medications she tried, we had to treat her differently. The personality changes that came with her first medication (when she was six years old) made her irritable and grumpy. So we had to learn patience while she adjusted to the medication. But other than that we didn’t treat her any differently than her brothers. She was a happy, active child. She played soccer, hockey, rode her bike, swam, danced and did many of the things other children do. We knew she had to be careful so we informed teachers, coaches and caregivers of her condition and made sure they were trained in seizure first aid but because we were so calm about it, it wasn’t really a big issue.

Robert’s Sister:  Did the kids at school treat your loved one differently because they had epilepsy? 

For the most part, Cait wasn’t treated differently at school. But in elementary school when she had a seizure during choir practice, some of the kids were scared and didn’t want to stand next to her anymore. Teachers also had “Caitlin Drills” teaching the class first aid in case she had a seizure in class. These were invariably done when she was off on a sick day, and so she came back to school and found some of the kids looking at her strangely but she didn’t know why.

In middle school, her medication was changed and she became a very quiet, introverted child as a result. We noticed that she was rarely invited to parties or friends’ homes. In high school, she was often left off the invitation list for parties. This changed in Grade 12 when a girl was hosting a graduation party for the entire grad class and she asked Cait privately if she would like to come (she hadn’t been sure if she could because of her epilepsy). Cait said yes, went to the party and had a blast and then a few more invites came her way.

Robert’s Sister:  What treatments did your loved one try?   What worked?  What didn’t work? 

Cait tried four different medications: Clobazam, Topamax, Lamotrigine and Keppra. She was on Topamax for five years and it did stop most of her seizures but she also suffered from side-effects (weight loss, disorganization, social withdrawal, memory problems and verbal aphasia. Eventually her white cell count dropped as well. So she chose to go off Topamax but the other medications all caused side-effects that were unbearable.

That was when Cait decided to go on the Modified Atkins Diet (a form of the Ketogenic Diet). She had been having multiple seizures before starting the diet but within 4 days of beginning the eating plan, she was completely seizure free. She stayed on the diet for six months until the severe abdominal symptoms she suffered from forced her to go off it. But since going off the diet she has not had any seizures (in August she celebrated her two years seizure free anniversary).

Robert’s Sister:  Do you think the medications affect how your loved one feels and behaves?

Medication definitely affected how Cait felt and behaved. The worst medication for her was the last one she tried, Keppra. She became angry and short-tempered almost immediately. As her dosage increased, she became withdrawn and depressed. Just after she reached the therapeutic dose of the drug, she became suicidal and started to engage in self harm. We weaned her off the medication and that was when she decided to try the Modified Atkins Diet.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

Cait started her own non-profit, The Epilepsy Awareness Squad, when she was 15 years old. I was the designated parent sponsor (so I drove and supervised all their activities). I was so inspired that these young high school kids were so motivated to make a difference in the lives of those living with Epilepsy. And people really responded to these kids. I think the fact that they were so young contributed to the success the organization has had. They just didn’t even think there were limitations on what they could do. They decided to host a Gala fundraiser their first year and they went and talked to the venue and businesses and within two months they had an event that sold out and raised a ton of money for epilepsy initiatives. Soon they were flying around Canada and the US giving talks and interacting with people from all over the world online. It was really inspiring!

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy has affected our lives in a lot of ways. People tell me I’m so calm when I talk about it but I think it’s because I was raised by a woman who lives well with epilepsy. But as a mother, I worry a lot. Cait has now moved away to go to university and I worry that she won’t get enough sleep or eat right and she’ll run herself down and end up having seizures again. I worry when she gets sick or has a migraine that she will be alone in her apartment and have a seizure. The dark side of being involved in advocacy is that you can’t get away from the risk factors that come with epilepsy. You hear the stories and meet the people who are dealing with horrific side effects, refractory epilepsy and SUDEP risks. And it’s hard to see her have to give up on some of her dreams because of the limitations epilepsy places on her life. But when one door closes another opens and Cait is so positive, herself, it is hard to dwell on the negatives for too long.

Robert’s Sister:  What is your favorite memory right now of your loved one? 

It’s difficult to pick just one memory. There are so many things Cait has done in her 18-years. Winning the Terry Fox Humanitarian Award, giving a TEDx Talk, winning the Canadian Living Me to We Youth in Action Award, going to EADDL and the Pipeline conference in San Francisco. But despite all those accomplishment, I think what I love most is her generous spirit and her compassion for others. Cait is always worrying about her friends and loved ones. She rarely thinks about herself. That is more of a trait than a memory but it is what I think of most when I think of my daughter.

Robert’s Sister:  What do you want people to know about epilepsy?

That anyone could develop epilepsy in their lifetime. There are a multitude of causes for this disorder and none of us can say for certain that we will never have a seizure. I think if more people knew that, there would be less stigma and more understanding around the disorder.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

Check out Cait’s SandpaperSmiles account on Facebook. Her epilepsy work opened her eyes to many other related and unrelated causes.

Thank you, Cathi, for sharing about your wonderful daughter, Cait. I look forward to one day having a cup of coffee with both of you!

Trish