The last 18-months have led our family on a journey for which we could have never prepared. I have learned many things on this journey that I want to share with you and your family. Whether you are just finding out your child has a chronic illness, have been struggling for a period of time or are contemplating using the ketogenic diet, or other alternative treatment method to help your child, I can help by coaching you and your family through the process.
In September 2011, on a quiet Sunday morning, our lives changed in an instant. It had been a rather “tough” morning with Emily, my then 6 year-old daughter who seemed to be doing her best at frustrating me! In the months leading up to that day, I had been noticing this “strange” behaviour which left me thinking she was in another world from time-to-time and seeing ghosts. She would just kind of tune out as we were talking, stare into space and then “come back” with a strange little giggle. It was like she was sharing a secret little moment with a person only she could see.
On that morning, as I was speaking with Emily, she went into her lala land daze, but this time it was marked with her eyes slowly rolling into the back of her head. I grabbed her shoulders and shaking her, I kept repeating her name…Emily, Emily, EMILY… After about 5 second, which seemed like 5 minutes, her eyes came back to the front and she seemed confused as to why I was standing there holding her arms, almost in tears. We rushed to the local walk-in medical clinic where we were asked to go to the local Emergency room right away. During our visit in the emergency room we were seen by a pediatrician. During his examination Emily had another three seizures. The doctor referred her to British Columbia Childrens Hospital and within days, they administered an EEG which confirmed for us that our daughter had epilepsy.
The next 18-months were fraught with fear, frustration, many doctors visits, lots of internet research trying to understand what the doctors weren’t telling us, MRI’s, more EEG’s, spinal taps and pretty regular blood work, as the medical teams tried to help our daughter. In the summer of 2012, after much research I discovered the Ketogenic Diet and made a plea with the doctors that they let us try Emily on the diet. After many meetings and discussions and alot of pleading, Emily was placed on the diet. Given her age, and given the importance of sticking to the diet, there was some doubt amoungst the medical team that our sweet little girl would actually be able to stick to such a strict eating routine.
Five months after starting the diet, and many different attempts with anit-seizure meds and our daughter is finally seizure free. To us this is a miracle, given that at the worst Emily was having upwards of 300 seizures a day. For our family, we have learned to find the silver lining in Emily’s medical condition. Previously divorced and living under separate roofs, her father and I are now working together and our family is being mended. We have successfully implemented systems and processes that help Emily stick with the diet, educate her friends and family, keep our son Riley involved in Emily’s condition and not being left to feel unloved or uninvolved.
It is my hope that you will invite me in to your life to help you and your family as you navigate this very difficult life circumstance.