14-year-old's life 'spent on a leash'

Last updated 05:01 21/08/2014
Epilepsy - A teenager with head in hands

LONELY: Tutoring classes can stop you falling too far behind in school, but there are no classes to catch you up on missed parties, movies and play dates with friends.

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Imagine you wake up around 7.30 in the morning, anticipating your plans for the day. You might be going to work or school. You might have something special happening - a birthday party, a long-awaited trip with your family or a friend. With this in mind, you try to get out of bed. But something's wrong.

You can't move your arms or legs properly and your body feels numb. You see the framed concert ticket on the wall in front of you, but then it's gone.

Your belongings - the books on your night stand, your reading glasses, the toy rabbit you've had since you were born - keep flickering in and out of view. 

Somebody leans over you, talking and shaking you a little, but you can't hear them properly and then they disappear. This is not something you can understand right now, but you're having absence seizures.

They start to generalise and trigger something else in your brain. You feel weak and begin to wonder where you are. Then everything goes dark. You don't know it, but you've gone into convulsions.

You come to with somebody stroking your forehead and asking how you're feeling. Your head hurts. Your eyes feels a little swollen - when you look in the mirror later, you'll discover they're outlined with yellow and purple bruising. You still feel weak and now, very thirsty.

You ask what time it is. It's 12.30pm. 

You get up slowly, have a drink and something to eat. You watch a DVD, then lie down for another sleep. Somebody wakes you up in time for dinner. The day is just about over. The day went by without you.

This is how my 14-year-old daughter lives with epilepsy. Her life spent on a leash. 

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For years, the longest period she went without convulsions was one to two weeks.

It's not the same every time. Sometimes she comes around on the bathroom floor, sometimes in an ambulance. Occasionally she's admitted to hospital overnight, to get her seizures under control.

On a bad seizure day, she'll need stitches for bloody injuries, because she has convulsed before somebody could get there to catch her fall. 

On the worst day, she looked like she'd been beaten, her eyes black, her lip split, and bruises from her nose to her elbow. For the first time ever, I ran out of her A&E room, so she wouldn't see me go to pieces as I phoned my parents for help.

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On an average seizure day, she has panadol for her post-seizure headache and then rests. On a good one, she has a single, brief seizure, not too much absence activity and feels better by mid-afternoon. She can then go to the tutoring classes which are preventing her from falling too far behind in school.

Unfortunately, there are no tutoring classes which can catch her up on the missed birthday parties, movies, and play dates with her friends. 

Socially, she's behind other kids her age, not too surprising when you consider how much less time than them she's conscious. She has a smaller social circle than she did pre-epilepsy and isn't involved with friend's lives the way she was. 

I think it's a terribly lonely thing - to spend so many days at home, sleeping off the effects of your out-of-control brain.

Sure, there's always a parent there, but they are parents who are often worried or tired and maybe relate to you a little too much like a patient. We've become caregivers for her epilepsy and often struggle to address other, more standard child's needs.

My daughter has trialled a lot of medication over the years and just recently started a dose which has seen her miss only three days in seven weeks - amazing progress. 

She's also been approved for a seizure assist dog and I'm confident this is going to change her life. Not only will she have on-call companionship and hugs galore, she'll have an extra pair of eyes on her, recognising pre-seizure signs and able to alert her or other family members to danger.

Just as important, an assist dog is a visual cue to other people that there's a significant medical issue affecting her. At college this will be priceless.

Years of seizures and heavy medications have taken their toll and although she's bright and interested, she learns at a much slower pace than other kids. She needs people to remember she benefits from patience and extra help.

And finally, an assistant dog will give her some independence. She'll be able to go to the park, the nearby native sanctuary, into town on the bus or even just to the bathroom, without a fearful parent hovering over her.

My dream for her is that with the right drug combination and support, she'll regain her former confidence and energy. And with improved health for her, other options would open for the whole family. 

As a single parent I'm the breadwinner and, while I hate leaving her, I'd like her to be well enough for me to work more and improve our financial circumstances. 

I want to be able to give her the gymnastics or guitar lessons she keeps asking for. When she talks about becoming a primary school teacher or a children's doctor, I want to be able to assure her I'll help make it happen. 

I also dream about having more to offer my son, a decent young man, who deserves better than years spent on the sidelines during crisis after crisis. It would be great to help him achieve HIS goals.

This is my wish - to get my family off that damn leash and give us all a chance to live life to the full.

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