Ivy was eating at the time and started to choke. She went limp and then was convulsing with a six-minute seizure. Her jaw was locked so her parents weren’t able to fully get the food out of her mouth. They thought they were losing her.
Ivy remembers very little of that day, flashes of boots, being carried by the paramedics and then waking up in the hospital. For Ivy’s family, it was one of the most frightening days of their lives.
How we could help
The time prior to diagnosis is one of the most frightening and difficult for most parents. They see their child in often life-threatening situations and they are faced with so much uncertainty.
Lynn turned to the Epilepsy Queensland Helpline and was able to speak to one of our epilepsy nurses.
We were able to provide information to Lynn about epilepsy, basic seizure first aid and how to prepare and advocate for Ivy. The most important thing we are able to do was to listen and provide support. Lynn and Scott did training in understanding epilepsy and administration of emergency medication. Our services team also were able to help with Ivy’s management plan and advice for her school.
A severe case
Ivy started on medication, which managed the tonic-clonic seizures, but she started to have frequent absence seizures, up to 50 a day. Lynn was able to get Ivy an appointment for an EEG. Within five minutes, they had registered eight seizures. They stopped the EEG and Ivy’s pediatric neurologist saw Lynn immediately.
His words still bring a tear to Lynn’s eyes today: “I need you to understand how serious this is. It’s one of the worst cases I’ve seen.”
Adjusting to new diagnosis
He changed Ivy’s medication and she slowly started to improve. In that first month, Ivy was unable to go to school, ride her bike and participate in sports. Her beloved jujitsu was definitely off the cards. To help her recovery, she had to have an extra sleep every afternoon, much to her disgust. For an active and social child like Ivy, the isolation and restrictions were devastating.
Despite some improvements in her seizures, Ivy’s family had to remain vigilant. During one of Ivy’s absence seizures, she had to be rescued by her father, Scott. They were out for a walk and Ivy nearly walked into a power pole and out onto the road where a truck was heading straight for her.
Ivy’s family decided to take on Epilepsy Queensland’s September Sizzle and raise awareness and funds for seizure first aid.
Ivy said: “One in 10 Australians will have a seizure in their lifetime. Most people don’t know what to do if someone has a seizure, but if they do, they can know how to help. It’s one of the most common things, so we have to try to raise awareness.”
For September Sizzle Lynn, who is a personal trainer, held a special fundraising training session with the help of Hockeyroo and Olympic gold medalist Angela Skirving.
Ivy also created the following video of her experience with epilepsy, to help to raise awareness.
Ivy is back to doing most of the things that she loves and shares this message:
“Don’t be ashamed of epilepsy. Lots of people have it, so it’s normal. I have epilepsy, but I’m still me. I’m still Ivy.”
An Ivy update...in her own words (July 2020)
Take 1- coming off my medication.
The first time mum and dad were not too thrilled by the idea – this was in the middle of 2019. My Pediatric neurologist Dr. Harry also wasn’t totally convinced, so I had to stay on them for a while longer. Dr. Harry is AMAZING. He’s so cool, nice and I feel honored to have him look after me. So if you are reading this Dr. Harry, thank you so much for dealing with me and my family!
Take 2 – I was coming off my epilim! School Christmas holidays 2019/20
Naturally, I was pumped, but I was scared. I didn’t really feel like going back to the hospital and getting another whole lot of ‘parent overprotection’. Even though I didn’t end up going to the hospital, I still got a whole lot of parent overprotection!
I started to ease off my pills until I was up to the day I stopped. Christmas holidays 2019/20, I, Ivy McAlister, was pill-free. After nearly 3 years on epilim, I was off. No more 7:30 am wake-ups, I could sleep in!
Christmas holidays are supposed to be fun, right? My parents made sure I was constantly supervised. I called it being locked in our house… family bonding?
More like me wanting to make an old fashion jailbreak and run away. I did see some of my friends, like my best friend of 10 years. But other than that it was like: “Ivy you all good?” and “Ivy are you okay?” or “Sweetie you’re taking a while in the shower, are you okay?”
I would always respond to that by yelling “I’M WASHING MY HAIR STALKER!” Ahhhh family love at its finest.
I get it, your family wants to protect you. It’s sweet… but insanely annoying. My brother treated me like he always did! Thank goodness for him or I would have been terrified. I mean come on, a sixteen-year-old boy acting like my parents would be… horror movie vibes.
My mum is literally the definition of super mum, she is amazing but she was also the definition of ‘overprotective parent’. My dad always had a way to make me laugh, it might have been his craziness or the way we never hug without him jabbing me in the ribs, but even he was being weird!
My parents were annoying, but they were there to help me. Sometimes it got way too annoying, so I just told them. They didn’t stop being overprotective but it made me feel better! If I needed to talk to someone I had my dog. I know that sounds weird, but it helped me. My dog Tilly was a great listener… probably because she never talked back.
Back to school
To be honest, I was really nervous about going back to high school after the holidays. School felt way more daunting without my medication. I was scared I was going to get stressed out, maybe have a seizure at school and go off in an ambulance. My friends were so good. They never talked about it, but I never went anywhere alone. Their constant company was nice.
So, here we are, over halfway through 2020. I’m still seizure and medication-free! I’ve started getting back to a world where I can climb trees and ride my bike, the fun things in life! It took a while to find myself again. I asked questions like, ‘Who is Ivy McAlister?’. If I’m honest, I still don’t know. It takes time to figure yourself out but I’m on my way.
We need to remember that just because you are coming off your medication, or you’re still on it, it doesn’t define you. I’m still me and you’re still you and that’s totally cool!