Our daughter Linsey has had uncontrolled epilepsy most of her life, and is intellectually challenged, but I would like to offer our story as one of encouragement to other families.

 

Linsey is 25 now, and our third child, having two older brothers. She was only a few weeks old, when she began having restless periods, where she became irritable and unsettled. Before long, these got worse, and she would scream, sometimes for hours. She would refuse to feed almost all day, but then she would settle again and be a normal happy contented baby. At fifteen weeks of age, she had a convulsion. I was nursing her, and her father noticed her face go blue, and her rag-doll limpness. We called the ambulance who took her to the Royal Children’s Hospital. She recovered quickly but remained in hospital for several days, while various tests, including an EEG were done. She was sent home with a clean bill of health.

 

I was told she did not have any major problems, so although her restless behaviour continued, I was afraid to take her back to the doctor. My other child, a three year old boy felt neglected, and reacted with some very negative behaviour, and my GP who thought I must be suffering post natal depression, sent me to a psychiatrist, who did help us settle our three year old. Otherwise nothing changed.

 

When she was several months old, she began rolling her eyes when she woke up. The eye rolling got worse, and she began falling backwards for no apparent reason, when she was sitting. Finally when she was about 12 months old, she got a bout of tonsillitis, which meant a visit to the doctor. I plucked up courage and told him my concerns about the eye rolling. His words were “Look, if it will make you happy, I will send her to a neurologist.” In the few weeks it took to get the appointment, she became noticeably worse. She was trying to walk but would often fall flat on her face, and the eye rolling was no quite obvious to everyone.

 

The specialist observed her and said he would treat her for epilepsy, even though he had not yet got the results of the EEG. When the results did come, the irregularities were obvious, so we could now give her condition a name- ‘epilepsy’.

 

I wish I had kept a diary of the medications we used, and their effects. Some controlled her seizures but had side effects, some just didn’t control her seizures- always they were absence seizures, but they would go on and on, one after another.

 

Linsey began pre-school the year she turned five, but the teacher was terrified of her and told me she would be better off at home. Linsey has always been a sociable child and enjoyed the company of other children, but was only allowed to go one or two mornings a week to school. At this point her development was slowing and we decided to give her another year at preschool, a different one this time. Her new teacher was not daunted and happily included Linsey in everything. She began Grade 1 the following year in a local school that encouraged children to learn at their own pace. Structured classes were almost non existent and she seemed to muddle along for a time. However her seizures became more frequent-the other children would walk her to the toilet and playground, as she would walk into walls and posts, and often had bruises on her forehead.

 

We now lived outside Brisbane and so had further to travel to visit her specialist, and it was hard to describe how bad things were to him, over the phone.  When she was about nine, her seizures were so severe she just rolled her eyes constantly, from morning to night. Her doctor put her into the Childrens Hospital in Brisbane, were she was observed, and they decided to try the Ketogenic diet. However, after only a few days at home, Linsey had a violent vomiting and gastric attack, so the diet was stopped. The seizures began again, and finally her doctors came up with a cocktail of four different drugs which controlled her seizures fairly well, with minimal side effects.

 

By this time Linsey had fallen well behind at school, and we decided that she should be moved to a Special School. This was a very difficult time, as I felt if only her seizures could be controlled, she could catch up at school. However her years at school were definitely happy ones, although her progress for a long time was slow.

 

Along the way, Linsey tried a ballet group, gymnastics, Brownies, a creative dance class (which lasted a number of years) Riding for the Disabled, and Girl's Brigade. It was when she was about fourteen that a Scout Group was formed at the Special School, by two very special people, and sponsored by the school. Linsey joined as a Scout and began camping, hiking, and earning badges. She progressed to Venturers, and joined in many activities with regular groups, always under the watchful eye of her leaders or a buddy.  She was challenged in many areas, and along with others of her group, completed a six hour walk from Mapleton down to the Obi Obi valley. She learned to camp without the aid of a blow up mattress and doona.  When she was eighteen, and not long before she left school, she was one of the first of the group to become a Rover.

 

That was a few years ago now, and since then she completed the necessary challenges to obtain her Baden Powell Award.

 

As part of the Baden Powell Award, Linsey had to complete a project, and she chose for this to improve her swimming, and to look at long distance swimming. She joined the local Special Olympics swim squad, and began competing in carnivals. Within twelve months, she was getting placings at the carnivals and competed in the Noosa Triathalon for People with Disabilities. Swam her second Triathalon the following year, and was included in the Special Olympics state swimming team to compete in the national games in Sydney later that year, where she won a gold and silver medal for swimming.

 

Linsey also does community service, working at Meals on Wheels two mornings a week, and she also helps the younger scouts at the Special School, where- I'm told- she has infinite patience. She also belongs to the local swimming club and participates on club nights, as well as working at the Salvation Army three mornings a week, sorting, ironing and pricing clothes

 

Linsey has learned to travel alone in our local area, using public transport, and usually she manages quite well. She completed a Hospitality Course for People with Disabilities at TAFE, and would love a paid job in a kitchen somewhere. Her seizures are relatively well controlled these days with Epilim and Lamictil, though she still has frequent absence seizures. Linsey would like her own place where she could live independently, but we believe that this should only happen with the right supports in place.

 

We would like our story to be one of encouragement for other parents who may be struggling with their young child's condition. We have, when appropriate, encouraged Linsey to be involved with 'ordinary' young people, with the expectation that they would accept her as she is. Sometimes this works, and sometimes not, but she now has wide group of acquaintances- people who recognise her in the street, and are able to help her out if she is in a 'spot of bother'- missed her train, or lost her money etc. Our young people with multiple disabilities and epilepsy may not grow up to become brain surgeons, but they can certainly have happy, productive, and challenging lives.