September 2016
Letter from the Director

Welcome to the revival of Brainwaves! Epilepsy Ottawa's newsletter is now online. The fresh, new logo is all is thanks to our amazing summer student, graphic designer Victoria. You'll notice her wonderful work in the new graphics and material we're releasing over the next few months. Stay tuned!

This has been a year of renewal and revival for Epilepsy Ottawa. Most recently:

• We've relaunched our website with a new look and some new content. On our homepage, you'll find the latest featured news, seizure first aid videos, and the Epilepsy Implementation Task Force's recommendations for treating epilepsy - useful tools for doctors and people affected by epilepsy.
• My Epilepsy Story is back with Tammy's Story about her son Kyle and their family's success with the Ketogenic Diet. Read an excerpt of their story in this issue of Brainwaves.
• The social group will meet regularly again! We'll meet on the first Monday of every other month, and announce upcoming meeting in this newsletter, on our website, and on our Facebook and Twitter feeds. See details of our next meeting below. If you're looking to connect with other social group members between meetings, join our Epilepsy Ottawa Social Facebook group.
• Sip N Style is just around the corner. We have an exciting line up of activities and silent auction items for the return of our flagship craft beer tasting event. See details below or on our Sip N Style webpage. You can buy tickets here. If you can't join us on Thursday, September 22, please consider supporting epilepsy services in our community with a donation.

Back to School

The start of the school year can be both exciting and nerve-racking for students, parents, and possibly even some teachers. If you are a parent sending a child with epilepsy to school, a teen or young adult with epilepsy heading to high school or post-secondary school, or an educator who has a student or colleague with epilepsy at your school, we may be able to help.

Contact us for information about:

• Seizure Smart: Epilepsy 101 and seizure first aid education
• Accommodating epilepsy in the classroom
• Resources to ensure you as a student with epilepsy are accommodated in the classroom

My Epilepsy Story
Tammy and Kyle

First comes marriage and then comes children. That was what my husband and I planned back in 1994. Our son Kyle was born 9 months after our wedding. It was an easy pregnancy and uneventful birth. We were delighted as he met all milestones over the next few months.

When he was 9 months old, we noticed Kyle’s head would subtly nod “yes” 3 or 4 times.  A visit to our paediatrician and an EEG left us shocked at the neurologist’s findings of epileptic seizures. In order to confirm the presence of seizures, more tests were scheduled. These tests were also conducted to determine if any malformations or lesions were present on or in his brain causing the seizures.

Test results fortunately showed no malformations or lesions. Kyle was given anti-seizure medication and admitted for observation and further testing. We were not prepared for a hospital stay. I remember the heavy metal hospital crib. The sides, in the up position, seemed very high. I particularly hated the clicking sound the bars made separating me from my child at a time when I needed to be closer to him, and him closer to me.

Kyle’s final diagnosis was what are commonly referred to as “head drop” seizures. We were sent home with medication, follow up paediatrician appointments, and hope. But normal baby progress slowly diminished – he was no longer crawling, no baby talk, and his interaction faded. Medication side effects made him hyperactive or zombie-like.

His seizures increased in frequency and what followed was a lengthy trial of various combinations of medications. There was no improvement and that scared us beyond words. Daily seizures were so frequent that we stopped counting. It was just too demoralizing....

A family member saw a Dateline story about a diet helping people with epilepsy. Hollywood producer Jim Abrahams’ son Charlie was diagnosed with epilepsy. Their child’s seizures were not controlled by medication. Jim did research and discovered Johns Hopkins Hospital treated kids with epilepsy using the Ketogenic diet. On the diet, Charlie’s seizures were completely controlled.

We immediately contacted the Montreal Children's Hospital, and learned that the diet was being administered there! Our neurologist, however, did not have confidence in the diet. It became clear that Kyle’s medication was not helping. We insisted that Kyle be placed on the diet as we had run out of options. Undeterred by our neurologist's lack of confidence, we assembled our team: a neurology nurse, a dietician and ourselves would administer the diet. We were admitted to the hospital and started the required two-day fast. Imagine not feeding your eleven and half month old for two days!

Gradually we introduced Kyle to the diet. Our dietician (our hero!) Instructed me how to calculate his meals according to the figures (fat/(pro+carb) ratio).  We continued the diet and recorded everything, from ketones, seizures, weight, mood, bowel movements, medication, etc. Remember: this was all done pre-Internet. All calculations were completed by hand - there were no 'Keto Diet Calculator' and no 'on-line support'.

It was tough to find the correct ratio that kept him in ketosis. Calculations for his ratio, weighing his food and pureeing it, took many hours a day.  Our dietician was 100% dedicated to working with us. We hadn’t seen any seizure improvement while he was on meds. The diet was tedious and time consuming but what was the alternative?

Read the rest of Tammy and Kyle's story at My Epilepsy Stories.

Do you have an epilepsy story you want to tell? Visit epilepsyottawa.ca/my-epilepsy-story to find out how to submit your story.

Just in time for fall renos, Rona sent us more loyalty cards. Now you can support Epilepsy Ottawa while you save on purchases at Rona. Present your loyalty card on your next trip to Rona and you’ll save 5%, then Rona will send 5% of your purchase price to Epilepsy Ottawa.

If you don’t already have a card, call 613-594-9255 or email info@epilepsyottawa.ca to make arrangements to pick up your card at our office in The Bronson Centre.