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
