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) FESR SERA YT A TERS EFT TW 7 hid EER | "Scugog's Community Newspaper of Choice" By Sally Cooke ort Perry Star Epilepsy is a familiar med- ical term to many people, but it's a condition most of us know very little about. How do we interact with epileptics, what should we do if someone has a seizure? Most people have a tendency to withdraw from anyone with the condition, because we fear the unknown. Even the causes of epilepsy are a mystery, rang- ing from head injuries to innate forms that are revealed by a seizure. Over all, epilepsy is largely inherited; 3 per cent of the pop- ulation will be born with or develop epilepsy, and that per- centage doubles when a child is conceived from two epileptic parents. The condition is surrounded by self-perpetuating myths, which unfortunately keep other people away. One myth, still found worldwide, says epilepsy is contagious. If you happen to be a child dealing with the disease, this ignorance and the resulting iso- lation can be almost too much to bear. : Port Perry mother Ann- Marie Trudelle and her hus- band Mark are doing what they can to publicize the condition so that their daughter Rachel will be able to lead as normal a life as possible. Rachel developed epilepsy at the age of two. Her initial diag- nosis was a multiple seizure disorder called Lennox-Gesaut Syridrome. The syndrome approximately one in 1,000 chil- dren. The younger the child at the time of the diagnosis the poorer the prognosis, including risks such as increased chances of severe mental retardation. A Brownie pal Sheleigh Scott. affects | child with this type of | will have many, short seizures several times a day. Some days, Rachel had up to 72 seizures. Side effects can include nightmares, headaches, irri- tability, alopecia (hair-loss), hyperactivity or lethargy. Rachel's diagnosis was later changed 'to Atypical Epilepsy. One of the side effects of the condition was moderate devel- opmental delay. When Rachel has a seizure, her short-term memory is affected. She also has decreased atten- tion and listening skills. Other accompanying conditions include astigmatism and far- sightedness, and the necessity for orthotics. Rachel also has to deal with side effects from the medication she is taking. Some of those effects will increase tendencies she already displays, such as hyperactivity and inattention increased by Phenobarbital, a drug commonly used to treat epilepsy. Mrs. Trudelle said all of the phenyl-barbiturates tend to impair cognitive skills. That's one of the reasons that Rachel has had a difficult time learning and retaining life skills such as dressing herself. Aiming to wean Rachel from as much of her medication as possible, Mrs. Trudelle is trying other avenues of treatment. Rachel is on a "ketogenic" diet, which is high-fat but sugar-free. Originally developed in the 1920s, research on the revolu- tionary diet was pushed aside by an emphasis on modern drugs.The diet inhibits seizures by stimulating the production of ketones, which are products left in the blood after dietary fat has been metabolized. Mrs. Trudelle has seen posi- tive changes in her daughter since the child went on the diet, and says Rachel is very good ' about sticking to bol the allowed foods; she understands it's very important. If Rachel does eat something that is not on the ketogenic diet, she cannot eat anything until testing reveals her key- tone levels have reached 14. (A normal level for you or I would be four). Since fasting is very dangerous for Rachel, her mother will try to avoid that route whenever possible. The hard- working mother left her nursing career to be Rachel Trudelle at right, standing with home for Rachel. Mrs. Trudelle is actively Trying to cope with a condition that's often misunderstood.... Rachel surrounded by love: Rachel's sup- port group includes Brownie leader "Chief" standing behind her, Brittany Roberts - occu- pational therapist and neighbour, in the mid- involved in her daughter's life and treatment, but acknowl- edges the priceless contribution of professionals and helpers involved in Rachel's life. Most have become good family friends. : Teenage neighbour Brittany Roberts is Rachel's follow- through occupational therapist, and the family baby-sitter. "I didn't really know what it was until I met her," said Brittany of Rachel's condition. "She was shy but once you get to know her, she feels more com- fortable. It does take a while." Margaret Scott is more com- monly known as "Chief" in Port Perry. Guiding Rachel's Brownie pack, the experienced leader has taught all different levels of girls, from Sparks to Brownies to Girl Guides. But it is her own experience with an autistic son that gives her a spe- cial understanding of Rachel. "Sometimes, it's just a case of knowing behaviour manage- ment," she said. "One night, Rachel was really upset. Tracy (Pastic), another Brownie leader also known as Rainbow Owl, realized first that it was a tactile defense. Rachel doesn't like to be touched." By giving Rachel her own space to work on arts and crafts, the problem was solved. She fin- ished all of the work like the other girls in her group. "Understanding is simply doing the thinking that goes along with different kids," said the Brownie leader. "You have to figure it out." Rachel's Brownie nights give the 12-year-old a rare opportu- nity for social interaction with other children. Chief also sees I sii] RR PST SY benefits for the girls in Rachel's pack. "She's been with them since September," said Mrs. Scott. "It's really neat to see the girls with her; they are so patient, they hold her hands, and she tolerates it better." "They don't see a handicap," added Mrs. Trudelle. "She's flourished. It blows her out of the water, because she doesn't have a lot of peers." Rachel goes to the Intermediate Associated Class at R.H. Cornish Public School . Teacher Sandy Curl-Jones is pleased with Rachel's progress in her class. "It's a matter of setting stan- dards, and she rises to them," said the teacher. The four other children in the class, aged 12 and 13, usu- ally use sign language to com- municate, for a variety of rea- sons. As their peers go to high school, Ms Curl-Jones said the parents of her students often begin to worry. "They look at what everyone else is doing and wonder, what will happen when I'm gone? It's scary, a different outlook for these parents." The recent educational cut- backs by the provincial govern- ment hit the disabled communi- ty before the regular streams, said Ms Curly-Jones, and were felt quickly in the relatively small population. But she has nothing but praise for the com- munity support offered by the Durham Region, especially com- pared to a school she visited in Washington. "They had 30 kids in a class and no one to help," she said. RR I EEEEEETTI---------------- H Te dle, her mother and strong advocate for her rights - Ann-Marie, on the right, and fellow Brownie Sheleigh Scott showing off the Girl Guide cookies that Rachel sold by herself. "Teachers had to do all the cooking, setting up work experi- ences, all this while dealing with a wide range of student disabilities." Mrs. Trudelle agreed with Rachel's teacher, saying they moved to Port Perry from Pickering partly based on all the glowing assessments they'd received about the support net- works Rachel would need. In many ways, Rachel is like any other 12-year-old girl, says her mother. Rachel loves pur- ple, and chose her bedroom's colour scheme: pink and white stripes. Brother Jake says Rachel likes to play cars with him, and his mother mentions the board games Guess Who, and Monopoly, a favorite cottage amusement. Rachel also loves making pretend pies, drawing pictures, and riding a motorized jeep with her brother. One of Mrs. Trudelle's favorite stories is how Rachel broke her special diet when she was decorating a Christmas tree with her Brownie pack. Her mother and the Brownie leaders assumed the treats for the tree would be birdseed, and other food for wild animals. Instead, the girls decorated cones with icing sugar. When the other Brownies told the adults how Rachel had eaten the icing with them, her mother couldn't help but be happy at the news, despite knowing Rachel would have to restore her ketones by fasting. "She'd eaten regular things like regular kids," said Mrs. Trudelle. "And last year it wouldn't have crossed her mind." |