Our son George began having tonic clonic seizures when he was thirteen. They were initially diagnosed as Juvenile Myoclonic syndrome – a type of epilepsy which typically starts at this age, in otherwise perfectly normal children. However the usual treatment didn't help, and it soon evolved into a very atypical picture, of pretty uncontrolled seizures. Adolescence is a difficult stage of life, and having uncontrolled seizures can certainly make things much more difficult, for us as parents, but most especially for the teenager involved. 

Today George is in his mid twenties, and is doing fine. He no longer has any seizures, and is not on epilepsy medication. These are my thoughts on how as a family, we helped him to weather the many difficult years he went through. 

One of the things I'm sure helped George was to allow him to live as normal a teenage life as possible between the constant seizures. It meant a bit of worry on our (parents') part and chewed fingernails as a result but we didn't prevent him doing things that he wanted (within reason). Wouldn't you know he was attracted to extreme sports like para-sailing,  rock climbing, surfing, skiing, snowboarding, plus rollerblading, skateboarding, BMX and dirt bike riding as well as less taxing sports like touch football, golf and bowling! 

Of course with things like surfing, he always had to be accompanied and watched closely and this was Dad's job as he had been a surf life-saver. While he was having constant seizures, he was of course denied a driving licence so we purchased a second hand off-road motor bike for him so that he too could be 'driving' something. At golf he would drive the golf cart and I feel such strategies did help to cater to the male driven interests although of course are quite suitable for females too. 

Allowing freedom was another worry for us parents but this was greatly assisted by giving him a mobile phone which I might add was (and continues to be but now for him) a very expensive exercise. However, we could check when we felt the need (which initially was quite often)  and he could also contact us, which he also did quite often. 

The first time he wanted to catch a train by himself to a friend's place way over in the northern suburbs, I said a prayer or two, or three. Would he manage the interchange at the city? Would he work out where to get off and then how to get to the friend's house from the station? Would he be picked on or punched up? No, he managed beautifully and was able to teach me a thing or two about the ticket machines and changing trains when it was my turn to have to use a train. Mind you, the mobile phone was handy to help ease my fears. I felt a little more comfortable with buses as there was always a driver who would be aware of problems. 

Learning about public transport was very relevant and so George was easily able to grasp and understand what he needed to know. So with school work, if a topic could be made relevant, he could understand it. It was up to me to find strategies for him to help with schooling. One such was that for an oral presentation, we would scan the list of possible topics to find something that could interest him. Sometimes, we had to take a twist and change things a bit to suit but communicating this to teachers was all it took to get permission. I remember George making a large model of a town. Inspired by an anti nuclear march we had attended, George built the model and found a way to blow it up using party poppers. With the model as the base, he was able to remember the talk as we had 'built' in cues plus as he was enthusiastic about showing the class the explosion and what would happen to the town, he was able to present a very  good 'oral.' As well as the hours that went into making it, painting etc, I remember it took us an hour to set it up in the classroom early in the morning. That was quite an elaborate exercise but we used many more simple strategies. Epilepsy Queensland can assist with learning strategies, many of which are covered in the excellent teachers' resource, 'Epilepsy, a Resource for Teachers'. It's great for parents too. George missed lots of school so strategies to help the learning were important. Epilepsy Queensland also helped out with helping the teachers and students at the school to understand about epilepsy. 

High school days were difficult for George, especially with bullying which he tried to hide from us to shield us from worry. As soon as practical, when he had completed, Year 10, we moved him to a local TAFE College where there was a much greater acceptance of individuality, a large range of ages and a huge variation in how people looked or dressed, very different from the old school uniform. Here George was able to study things in which he was interested (mainly drama and performance) and this made the learning much easier. He blossomed in the more mature environment. 

We always encouraged George to be open about his seizures as indeed we were, and he was comfortable in telling people about them. He had them so often, it would have been difficult to hide the fact and he understood that someone may need to be aware that something may suddenly happen to him. He told me one day that a girl on a bus had asked him if he was going to the school disco to which he replied that it wasn't a good idea for him to go as they were having strobe lighting and his seizures were easily triggered by such lighting. (We now know there are simple strategies to cope with this. Just ask EQI if you want to know more.) To his surprise the girl changed her voice to a whisper and said that she too had epilepsy but she never told people about it! 

In my work I often come across adults with epilepsy who do not venture outside their homes if there is no-one to accompany them. They sadly live shut-in lives, living in fear of perhaps having a seizure in public. I feel it should not be any inconvenience at all for the public to cope with such a natural event. One thing that can help is to wear either an identification bracelet, or 'vial of life' pendant or similar device. George wore either at different times but a wallet card can also be very helpful. With the card and the pendant (containing a scroll) more information about your circumstances and even how you would like to be treated as well as contact numbers, can be included. Then if a seizure occurs when you are out and about on your own, people are informed about how best to help. 

Ensuring George had enough sleep and ate regularly and reasonably healthily were other strategies which helped to minimise seizures to only a few each week. We were lucky that at the time, George always felt tired enough (probably the medication helped) to go to bed at a reasonable hour. He also knew that if he stayed up past 10.30pm (in his case) he would inevitably have a seizure the next morning. Many teenagers find it difficult to go to bed early, so ensuring adequate nutrition and self control is important. 

Another strategy we had was to make George really concentrate if he looked unsteady on waking. It was really only the day after seizures and perhaps the following day that George would be fine. After that, seizure activity to varying degrees would be present to build up to the next lot of seizures. Mornings on waking were always a worry so we would get him to read aloud (silent reading would allow the mind to drift)  or go and shoot some baskets (basketball) or do some juggling. It was always like watching someone in slow motion but eventually the mind would respond and kick back into gear. I also experimented with strong smells to jerk the mind back into action. George hated the smelling salts and I didn't resort to this often as there are other stimulating aromas. 

A word of caution is necessary here as in some cases, a relaxant is called for. Seizures can be triggered by boredom or an inattentive mind but they can also be triggered by stress in which case relaxation techniques and/or aromas should be employed. In George's case, it was more common for him to need something to stimulate the brain but you need to be tuned in to the individual situation and circumstances. 

George's photosensitivity was previously mentioned and this meant that television, especially at night could be and very often was, a  trigger for seizures. EQI has information sheets about many simple strategies that can be used to cope with this but at the time we helped the situation by purchasing a tiny liquid crystal television device which could be plugged in to the house TV for improved reception. Light flashes out from an ordinary television screen but seems to be absorbed by the liquid crystal. He had to sit with his back to the television but the couch was positioned so that he was then facing (and being part of) the rest of the family. I think the smallness of the screen also assisted with concentration.  Movie screens weren't a problem as the light is projected onto a screen not flashing out from it. This was a godsend as he loves the movies. 

My final tip is to do your own research. Inform yourselves as much as possible about the particular type of epilepsy with which you live. EQI can provide much information and also websites for you to be able to check for yourself on the latest research developments. It took me years but I finally tracked down the cause of our son's seizures and the remedy was remarkably simple. But that's another story.