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Parenting a Child with Epilepsy: A Journey Continued

Posted Nov 04 2009 10:03pm

We have been fortunate to have a guest poster-- a mother of a young boy with epilepsy, who is now on a special diet to help treat his seizures. Here is the third installment of her thread called "Parenting a Child With Epilepsy: A Journey".

Part lll
"Our son has started school. For those people who are parenting a child with epilepsy, you know how significant a change that can be. All of a sudden someone else is responsible for my child for a number of hours a day. And that person, while caring and responsible, is also in charge of many others, each of whom have needs different from my child with epilepsy. Our story is a very positive one, however. Our school has stepped up, researched, and allowed us to literally bury them in information. They listen, absorb, ask good questions and implement the strategies and therapies we suggest. Our son’s teacher is fabulous, unflappable and very capable. She treats him like all of the other children, expecting him to extend himself, maybe not in the same way as his classmates, but in a way that will promote personal growth and work toward attaining the goals we have worked together to set for him. She works in close contact with us, so we don’t worry and so we know how he is handling this new routine.

Our son has suffered a lot of negative behavioural side effects from his anticonvulsant meds: he is on two different drug therapies. We have added a third therapy this fall in the form of a Low Glycemic Index diet, or a modified Atkins diet for seizures. What this entails is lining up a diet where his calories consist of 70% fat, 20% protein and 10% carbohydrate. This was recommended by a paediatric neurologist as our son does get seizure relief from his anticonvulsants and so the Ketogenic Diet is considered too rigorous. While we work with a dietician for ideas, and advice, the diet is driven at home by the parents. We work hard to balance, calculate and coordinate to create meals that are appetizing and maintain the level of extra fat in his system. This is a difficult task, and is taken on only in the best interests of our son, to reduce his anticonvulsant medication, particularly the one linked closely to behavioural problems and suicide. The school, has also taken up this challenge, and has placed an aide with our son while he eats, in order to encourage him to eat everything he is sent, and therefore retain the 70-20-10 balance he needs. They have someone assigned to him on recess supervision to ensure he doesn’t eat food from someone else’ lunch. They have made sure that classroom celebrations no longer include food, so they don’t exclude one class member. They have lists of food no-no’s for Sam posted in the classroom, so a substitute teacher knows not even one carrot stick is okay. Mostly they ask us when they are unsure, and work hard to make sure we feel comfortable sending him and that he is schooled while he is there. We could ask for nothing more. I have spoken with parents whose children are on a diet for seizures, and they had to involve politicians to rally the school board in order to get cooperation from the school for their child’s special needs. We are so fortunate, our experience has been the opposite of that.

Our local epilepsy educator came to the school last week to give information on epilepsy and seizures, and to help the teachers in our school understand our son’s needs and the needs of other students who may have a seizure disorder. This was an optional seminar, and yet every teacher in our school came, stayed and asked good questions. I was overwhelmed by their show of support. They wanted to know our plan for seizure response, they want to be prepared to help. The woman who came to give the seminar offered to come back as often as we feel is necessary and will be returning later in the fall to speak to both Kindergarten classrooms about seizures and epilepsy at the children’s level. Our teacher is specifically bringing both classes to school that day (they go every other day in rural Saskatchewan) for this specific purpose, which makes a lot of extra work for her.

So as we enter into this season of taking stock, and thankfulness (all celebrated with food of course) we are most grateful for where we live, and the people that make up our school system. We could be in no better place."
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