I think it is only fitting to bring you an interview today, on Thanksgiving, with a mom who watched her daughter suffer through 75 to 100 seizures a day to now knowing her daughter is three years seizure-free. There are still challenges but I love this mom who has demonstrated day in and day out, for years, what resilience means.
Sometimes that means soldiering on while feeling alone. Sometimes it means patiently trying medication after medication without any hint of success. Sometimes it means knowing siblings have suffered because the attention has to be on the child who is sick. Sometimes it means choosing a surgery that is dramatic, extreme and not without risk.
And, sometimes, that resilience and those hard decisions pay off.
Amy is that mom.
Robert’s Sister: Tell us about the person you are caring for.
I care for our 11 year old daughter, Paige.
Robert’s Sister: When was Paige first diagnosed? Tell us about the process of getting the diagnosis.
Paige was diagnosed at 3 with epilepsy. Our local hospital didn't believe us when we took her to the ER; gladly we got an appointment with a local Neurologist within one week and referred to Children's Hospital – Colorado’s top Neurologist. She was diagnosed with Childhood onset of epilepsy shortly after. VEEG's, MRIS, testing, testing, testing, and home videos of her seizing was our best help with diagnosis. Kids don't seem to seize while hooked up to tests or in a hospital environment.
Robert’s Sister: How did you feel when Paige was first diagnosed with epilepsy?
Shattered. Going from a healthy, happy 3 year old to seizing continuously. Hardest part was no explanation as to why they started, and not understanding it all. We did find out after her first emergency brain surgery that the cause of her seizures was Cortical Dysplasia of the right side of her brain.
Robert’s Sister: Did your family treat Paige differently after the diagnosis? If so, how?
Most definitely! Our older sons started hiding out in their rooms, but I can't blame them, it was all very traumatic. All of our family seemed to treat us like we had the plague. In the eight years Paige has suffered with epilepsy and had three brain surgeries, not a single family member or friend has ever witnessed her seizures. We have been left alone in this.
[Editor’s note: The following paragraph was added after the original post was published.] I want to clarify that this is what WE felt when she first got sick. We were totally alone, and yes we did lose what we thought were some dear friends, people didn't know how to talk to us, so they just quit.
Robert’s Sister: Did the kids at school treat Paige differently because she had epilepsy?
Yes and no. She has always been in a contained classroom, so her peers don't see her as different. Other children in the school do see her differently, majority of them are great, nice, loving to her, but also have the ones that have started making fun of her.
Robert’s Sister: What treatments did Paige try? What worked? What didn’t work?
Paige failed every type of AED [anti-epileptic drug], due to either allergic reactions, increase in seizures due to it, or just didn't help her. She was on six different AEDS by the age of eight. She had her third and, hopefully, final epilepsy brain surgery three years ago at eight years old, a complete right modified functional Hemispherectomy. She has been seizure free since the morning of this surgery. Her last seizure was at 4:00 a.m. on July 31st, 2013. She now lives with left hemiplegia. She has bilateral braces on her legs to walk and no use of her left hand what so ever, also functionally blind on the left of both eyes.
Robert’s Sister: Do you think the medications affect how Paige feels and behaves?
No doubt these medications are like poison. Our poor daughter had no regulation of any emotions, behaviors, feelings. She was in a complete fog most of the time. She had nocturnal seizures(75 – 100 nightly) so she never got sleep; then add Topamax, Keppra, Banzal, Lamictal, Diazepam and Onfi 2x daily and she had no chance of even a life.
Robert’s Sister: Have you done any advocacy work (individually or with an organization)? What made you want to be involved?
We live in a very small town. I have worked with the local newspaper on articles during Epilepsy Awareness month, talk to the kids at Paige's school about epilepsy and what she has gone through over the years, and still today due to her left hemiplegia.
|The Schlenker Family|
Robert’s Sister: How has epilepsy affected your life?
It stopped our life as we knew it. I feel like we have lost so many years due to seizures. Our older sons grew up, our youngest (who was two weeks old when Paige's seizures started) has grown up without me even remembering him as a baby; they all four missed any type of childhood.
My husband and I are stronger than ever – we have to be – but we have lost the "us." I haven't been able to work since Paige became sick which has caused serious hardship for us. But it also made us be strong, made us advocate for our daughter, learn about a disorder that I never knew anything about or heard about. It brought me into a world of amazing special needs families. We may have lost what we thought were real friends due to our daughters Epilepsy, but the fellow Epilepsy families I have meet over this journey has taught me what true friendships are.
Robert’s Sister: What is your favorite memory right now of Paige?
That’s a hard one. I have great memories of her before epilepsy, the years during the worst of it when she still shined, but my favorite memories are recent ones. The sound of her laughter when she laughs so hard she gets the hiccups, cracking jokes to her dad, even when she gets angry with me. She is seizure free and off of all her AEDS, her mind is so clear, she is thinking for herself. This is what my happiness is. And to think they removed the entire right side of her brain for her to be this way!
Robert’s Sister: What do you want people to know about epilepsy?
It is truly devastating. I don't know how else to describe it.
Robert’s Sister: Is there anything else you want to say?
I truly appreciate you for the Epilepsy Awareness you bring. You and Robert have been my inspiration over the years. You have taught me to advocate. We need so much more awareness than what there is now!
I am grateful to Amy, Paige and the rest of their family for sharing Paige’s story. It is families like this who bring about epilepsy awareness and who inspire me to continue to share their stories. Thank you, Amy. I hope Paige continues to be seizure free and I look forward to following up again in a few years when Paige is a teenager!
Since it is Thanksgiving, I would like to say I am grateful to the scientists, researchers, nurse practitioners and doctors all working to find a cure for epilepsy. I am grateful to the families who put one foot in front of the other to do whatever they can to stop the seizures. I am grateful to the epilepsy advocates who want everyone to know just how important it is to find a cure and to give these families and caregivers support.
I am grateful to you for reading these stories and sharing them with people who may not be aware of how serious and devastating epilepsy can be.
Wishing everyone a wonderful day full of love, family and friends.