WA News Guest Opinion / Editorial The 360 View of Epilepsy
The 360 View of Epilepsy
Written by Dr Catherine Harrison
Thursday, 03 August 2017

 

I didn't know anyone with epilepsy when I was growing up. As a medical student, I never saw a seizure. Epilepsy was one of those conditions on the list of every piece of paperwork along with heart disease and diabetes. I learnt about anticonvulsants that sounded fancy and I thought that they worked.

As a registrar, none of my patients in general practice talked about seizures even if they were on anticonvulsants. I had no idea that the consequences of having epilepsy are far greater than the immediate effects of a tonic-clonic seizure. Dealing with a blue/grey child who is unconscious, fitting, vomiting and bleeding from their nose is terrible but it is the easy bit compared to the ongoing social and lifestyle complications of the diagnosis.

The normal struggles of life are challenging. Parenthood, marriage, maintaining financial stability and one’s own health are not minor accomplishments. With a chronically ill child, such challenges can be overwhelming without an abundance of community support.

The thing about epilepsy is that it is so unpredictable, so variable, and so life threatening all the time. If your medication works and you are seizure free that's fantastic. But what if you forget a tablet or have gastroenteritis or your brain changes or your hormones change, and you suddenly begin having seizures? My son has not had more than seven months free of seizure and his favourite past-times include high-risk activities such as skateboarding and ice-skating.

Struggle for independence

He is 11 and he doesn't want me to wait at the bus stop with him. He wants to walk home by himself. He can’t go on a school camp because parents aren’t allowed on school camps, and initially his seizures occurred during sleep. But if two doctors find having a blue child convulsing stressful at 3am how is it possible for teachers to cope? So all those fantastic esteem-building activities in the bush that schools provide these days are very difficult to attend, and the other students ask why he isn’t there.

If you are unlucky enough not to have seizure control, then all the other factors that trigger seizures become paramount. Sleep is the most important element. But if getting to sleep by a certain time becomes more important than anything, then how do you manage your family’s social life?

There can be no barbecues that roll past 7pm because you need time for the wind-down. I have become proficient at telling people they have to leave. Subtlety doesn't work. Even prearranged time agreements don’t work; people often think that if it's going well, it should keep going. They don’t know that ‘going well’ can instantly turn into a disastrous evening.

Taking tablets three times a day indefinitely, exactly on time, is challenging but do-able. Coping with the side effects of medication that doesn’t work, having to wait and see what will happen with the next kind of tablet is devastating. Steven Johnson rash? Insomnia? Mania? Depression? Suicidal ideation? Psychoactive drugs affect individuals differently.

Life is shaped by epilepsy

Epilepsy is isolating. It isolates the child; it isolates the parents. We don’t go to movies, not because of the photosensitivity issue but because today's movies have sensory overload. They are too loud, too bright, too fast. They make our son feel unwell. But ask any parent about July school holidays and what kids do during winter, or where today’s kids have birthday parties and movies play a big part.

If your child gets invited on a play date how much do you prepare other parents? You don’t want to scare them off having your child, but you want to make sure everyone is equipped to cope in the event of a seizure. I talk openly about that possibility, which luckily is low, but it is not zero. There are a few wonderful mums around who will say: “now just tell me what I would need to do.” They are rare.

The financial impact for the family and the individual later in life can be enormous. I have been in the most privileged position of being able to give up my medical career and be available for all the appointments and all the school meetings.

Sleep is the starting point of wellness, so if there is a bad night, I can allow a catch-up sleep-in and get to school when it suits us. An understanding and cooperative school is essential. The other children have to be as independent as possible because today might be a sleep-in day and there's no leaving a child with epilepsy asleep unsupervised.

Morning marathons

Our house is like an Olympic relay team in the mornings. Minutes count. I must return home for my husband to leave for work on time. So if it's hard for us, what about separated families where there's only one parent at home? Or what if you have two children with difficulties?

However, there is a silver lining for us. As awful as even the thought of SUDEP (Sudden Unexplained Death in Epilepsy) is, it makes me grateful when I wake up and my children are alive. This prominent and daily reminder of mortality makes me slow down more. I enjoy the simple moments. I am less worried about life achievements and more conscious about appreciating what I already have. Ironically, I worry less about the future because I think getting through each day well is enough of a goal.

Being on the Board of the Epilepsy Association and attending parent support groups has got us through some very tough times. My acquaintance with mothers experiencing similar problems has made all the difference. They had been there; they had tried this and that; they had come up with ideas that had worked. They knew far more about epilepsy than I had ever learnt as a medical student. Most importantly, I wasn’t alone. These mums knew exactly what I was talking about.

Through the association I have had a glimpse of the discrimination and isolation suffered by many people with epilepsy. The financial hardship faced by those who have been intermittently too unwell to maintain employment but do not qualify for disability services. Epilepsy is not considered a disability. For some people, it is not, for others, it is catastrophic, even if only intermittently.

The vision of the Epilepsy Association is to have West Australians with epilepsy living without fear and discrimination. That is a long way off. However, if I have one message to the medical profession, it is to remember that the medical problems of epilepsy are only the tip of the iceberg.

By Dr Catherine Harrison

ED: www.epilepsywa.asn.au