veronica

Our beautiful, healthy daughter Louise had a long febrile seizure when she was sixteen months old. I am a registered nurse, and used to seeing and dealing with seizures, so I was not too shocked by it, but when its your own child, it is much harder. She had a virus called Roseola, which in young children or infants can be extremely serious. Fourteen months later she had another febrile seizure, this time a lengthy one, but she recovered from the virus with no brain damage- which can occur in severe cases.

She began having regular seizures from the age of four, usually complex partial seizures, with visual hallucinations. I felt like I was on call twenty four hours a day.

It certainly affected her in a number of ways. She was bullied a lot by other children in school, both primary and high schools. Years later, she met one of the girls who had bullied her, and asked her why she had done it. The girl replied that it was because she was always getting special attention, time off school, trips to Brisbane to see the specialist etc.

We had a number of difficult years. She had mainly complex partial seizures starting in her left temporal lobe, though at one stage there was a suggestion that it may also be coming from the frontal lobes of her brain. Sometime she would have tonic clonic convulsions, when the seizure activity spread from the area that it started in. Her partial seizures usually consisted of blank looks, mumbling which made no sense, and fiddling with her hands. Some times she would hallucinate and talk about the red and yellow dancing ladies she could see. When it ended up in a convulsion, she would need midazolam to stop it, as the seizures could go on for a long time. Her seizures occurred mainly in the mornings, and she had them in all sorts of different places, including once in the Lyric theatre, and once in McDonalds. However in both places, people were very helpful. She tried a number of medications, with varying results and side effects.

When she was fifteen, she heard that surgery may be possible, and we were a little concerned of course, but supported her to find out more about it. She was referred to a specialist in Sydney, had the lengthy process of counseling and assessment, and went ahead with the left temporal lobectomy in Sydney, when she was sixteen.

That was two years ago. The surgery went well, with no complications. She began back at a new school, one which she had to board at, as we live on a property in the country. Since then, she has been seizure free, which is of course what we had hoped for, and wonderful. However after having had frequent seizures most of her life until then, for Louise it was a big adjustment- one which she has now come to terms with. To begin with she had depression, which is not uncommon with this sort of surgery, but after a year or so of treatment she is now over it.

She finished High School and did well considering the problems she had experienced, and plans to go on with tertiary study next year. Before that, she decided to become an exchange student, and is currently studying and living with an exchange family in Austria. She is learning to speak German, and has had some trips with her family, including one to visit Italy.

If I had any tips to give other families struggling with epilepsy, I would say-

Try to allow your child to live as ‘normal’ a life as possible. Don’t let them feel they are ‘sick’ or inferior, or some sort of invalid.

Be honest with others about it. This is important, just in case the child should have a seizure, but unfortunately it can scare some people. When Louise had a birthday party, we always invited lots of other children, and they all came. However she was never invited back to their parties, and I think it may have been because the parents were scared, and didn’t know what they would do if she had a seizure. Perhaps if I had explained how they looked, and what the parent would need to do that may have helped. They were usually just a blank stare, and needed nothing doing, and even if she had a convulsion, they only had to put her on her side, and phone for me. So that was a hurtful thing for Louise, and us to cope with.

We did take Louise to see a neuropsychologist, for assessment, when she was having problems in school. The report showed that she had above average intelligence, but perhaps some specific learning problems due to medication side effects, frequent temporal lobe seizures, and missing quite a bit of school. The report recommended that she shouldn’t do the same exams and assessments as other children. However the schools do not cater for this, and it was difficult, and in retrospect, I regret having the assessment done, as it just made her feel more frustrated.

If your child has uncontrolled seizures, medication cannot control them, and they prove to be a suitable candidate for surgery- and not everyone is- then speaking from personal experience, I would recommend supporting your child with this decision. If Louise had not had it done, she could not have lived an independent life, could never drive, and may have found employment difficult.