By Daisy Argudin
Our life is often segmented by the big moments. Births, deaths, weddings are all such moments. Realizing your child has epilepsy is also one of those moments. It's not easy to think of your child as having special needs, it is also not easy to realize you are now a special needs parent.
I can remember the first time I saw my 4 year old Jo have a seizure. We had a great day out doing some toy shopping and we were getting ready to head home. As he climbed into his car seat he paused looked at me and blinked several times and continued on as if nothing happened. It seemed a bit odd but not enough for me to worry. In the next few days I saw similar episodes but just wrote it off as being tired or hungry and didn't give it much thought.
Then one day, Jo and I were talking and he started to slur his words, blankly stare up and blink repeatedly. Suddenly he stopped blinking and just walked away from me. In that moment I knew something was wrong. Being a 21st century parent (haha!) I went to Google and quickly suspected we were dealing with epilepsy. My husband had epilepsy as a child, although I never knew that it could be hereditary.
Within a few weeks we had seen a neurologist that had confirmed the diagnosis.
Although there are thousands of people living with epilepsy when your child has it you feel like you are the only ones in the world. But you are not alone!
My heart breaks when I see him have a seizure. I also worry about when and if he will outgrow them. I wish I didn't know terms like EEG, and 3 megahertz spikes, generalized seizure, SUDEP (sudden unexpected death in epilepsy), and so many more.
The modified Atkins diet (MAD) has been a good fit for our family. It's a lower carb, moderate protein, high fat diet. We as a family have learned how to cook for Jo and how to make him feel included. His allergies to dairy and eggs limit our food choice but have also made us more creative!
Epilepsy hasn't just affected Jo, it has affected all of our lives. My boys all advocate for the use of a carb-restricted diet to help with epilepsy. People are often impressed with Jo's willingness to stick with the diet since it isn’t always easy. I remember crying for days when this all began.
Now two years later, there is a bit of a routine in our lives that makes the diet manageable, but it’s seeing how much the diet has helped him that gives us the inspiration to keep going!
How has epilepsy changed your family?