As the ‘holiday season’ approaches, our minds turn to joyous things like family and exchanging gifts. Many say it is ‘the most wonderful time of the year’.
Christmas should be a time of joy for families, but for those who have children with epilepsy, it can be a time of unpredictable seizures, heartache, disruption, ambulance trips and hospital. Recently I spoke with Sheree, mother of small daughters Grace and Mia, and she was happy to share their family’s epilepsy story with me.
Mia had her first seizure, unwitnessed, on 3rd February 2020, one month before her second birthday. Her Dad, Mitchell put her to bed around 6pm, and later something told him he needed to check on her. He found Mia ‘blue’ and covered in vomit. She was rushed to Wollongong hospital.
Sheree was at work as an Assistant in Nursing. When Mitchell called, she felt shocked and couldn’t get her mind around what had happened. “This can’t be! Mia is a perfectly healthy child.” Sheree rushed to hospital to find Mia “covered with wires” and “pumped full of antibiotics.”
After various tests they went home, without answers. Three weeks later Mia had another seizure. This time Sheree witnessed it, in the daytime while Mia was sleeping. Mia stiffened, sat up straight, leant to the side, and her little face drooped. When paramedics arrived, they gave Mia emergency medication to stop the seizure.
Mia was referred to the Paediatric Outpatient Clinic and results from the EEG “picked up something.” Mia started antiseizure medication and was put on a waiting list for a Neurologist.
Working in the health industry herself, Sheree felt a lot of pressure to find answers. She turned to ‘Dr Google’ but reading about brain tumours and cancer frightened her, and she considered epilepsy “a horrible thing.” Sheree had seen one of her school friends have ‘fits’ and tragically, he had passed away because of epilepsy.
While waiting for answers, Sheree was still trying to still go to work and “hold things together,” caring for Mia and four-year-old sister Grace. Sheree called the doctor all the time about Mia: her twitching, having tremors, and worrying about the long-term effects of the medication.
In March 2020 Sheree received a letter that devastated her – Due to Covid, all MRI services had been cancelled – including Mia’s. Sheree became angry and upset. She felt very alone. Mitchell had “fly in, fly out” work in tree vegetation control and was often away from home.
Desperate for the support of her parents who lived on the Gold Coast, Sheree again used Dr Google, this time to research treatment options on the Gold Coast. She located a Paediatric Neurologist, and the family moved, right before the borders closed the first time (due to Covid).
Mia’s Neurologist stressed the family must learn about: Mia’s epilepsy, CPR, safety precautions, and monitoring devices. He told them about Epilepsy Action Australia. Sheree was amazed at the information, videos, and courses on our website, and we connected Sheree with our Paediatric Clinical Nurse Consultant. Sheree says support and education from Epilepsy Action “seemed to turn the situation (at least in my mind) from a ‘death sentence’ into ‘management’ of the situation.”
There were further medical tests and treatments for Mia: overnight ‘sleep deprived’ EEGs, MRIs, and twice daily medications. Seizure free from February to December 2020, Mia started gagging and “went floppy” ten days before Christmas. Sheree put her in the recovery position and called the ambulance. Mia was clenching her teeth, aspirating, choking, then stopped breathing and was blue. Big sister Grace, just five years old, stood in Mia’s doorway staring.
Paramedics gave Mia emergency medication, but this was a prolonged seizure. “I am going to lose her,” thought Sheree. “Then I said to myself (and I think I said aloud to Mia): NO – You can’t leave. We’ve got a big life to live.” After the Resuscitation Bay, Mia went to ICU. Sheree curled up next to her and Mia slept. The family was able to have Christmas together.
Mia now has “all sorts of seizures,” not just the convulsive type. An MRI found a “mass” in Mia’s brain – a ‘cavernoma’ – benign, but deep and large. It may or may not be related to Mia’s epilepsy. They just don’t know. The Neurosurgeon says Mia meets criteria for brain surgery, but because of the location it is dangerous and could risk facial paralysis. Mia is booked for a follow-up MRI in February 2023.
Sheree says, “thanks to Epilepsy Action, I have become an expert in Mia’s epilepsy.” Speaking of our Clinical Nurse she says, “she has been there, for years now. She saved my life – literally. Always an email or phone call away. I ask questions, get resources, education, and reassurance. “
As CEO of Epilepsy Action, I am humbled by the courage of many families and proud to know we make a real difference with essential support and education when it is needed most. Sheree says they have coped so much better and understood epilepsy because of Epilepsy Action support and resources. “This has been a “roller coaster ride” says Sheree. “We are still going, but we are ‘managing’ this. It’s a journey.”
Mitchell doesn’t go away for work now, and Sheree does casual agency work. Little Grace (now six) is a brave little warrior who has turned the lights on for paramedics, let them into the house, and guided them up the hall to Mia. People ask about Mia’s future, “but that is too far away” says Sheree. “We may never get all the answers about Mia’s epilepsy. For now, we enjoy every day with Mia.”
Mia starts school next year. Epilepsy Action is helping Sheree create a Seizure Management Plan for the school and will be recommending our courses for school staff. Epilepsy Action is on that journey with Mia and her family.
Christmas moves us to think of others and directs our thoughts to giving. From us at Epilepsy Action, we thank all those generous people who contribute to make sure we can do what we do for families like Mia’s who count on us for specialist advice and support in challenging times.
Our warmest wishes to you all for safe and happy holiday period.
PS When the family first contacted us, Mia received her first Ted-E-Bear from Epilepsy Action, and it is “very well used”. It sleeps in Mia’s bed, goes everywhere with her, and has many cups of tea! We have just sent Mia a ‘fresh’ Ted-E-Bear, and one for Grace too!