In January 2009, at 9 ½ months old, our son began experiencing seizures, later to be termed ‘Epileptic Seizures’. Over the course of the past 15 months, the seizures have become more frequent and have increased dramatically in severity. The seizures seem to be resident to medications and have now been labeled as ‘intractable or refractory’ as the many anti-convulsion medications that they have tried have all failed.
On April 7, 2010, the day before Liam’s second birthday we received the news no parent wants to hear. Results of genetic testing that Liam’s neurologist had requested have came back positive and it has been determined that Liam is pre-disposed to the seizures, that the condition is life-long and it is here to stay. Liam has what’s called a SCN1A mutation and has been diagnosed with a rare condition called ‘Dravet Syndrome’. While we are all very upset and coping as best we can, we feel that there is no time to waste, we have to charge on and find the best possible treatment for Liam that provides him with the best chances in life.
Today we arrived at CHEO to start the Ketogenic Diet. The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet primarily used to treat difficult-to-control (refractory) epilepsy in children. Although the diet only has a 30% chance in helping Liam, it is amazing the stories we have read about children whom this diet has helped. We can only hope that is works for Liam.
Our goal in forming this group is to find out as much as we possibly can in regards to our son’s diagnoses. We want to learn as much as we possibly can about the SCN1A Mutation, Dravet Syndrome, the Ketogenic Diet, and different resources available to families with epileptic children. We believe that we are at an incredible advantage as many of you work in fields which could guide us in the right direction. Whether you are a doctor, nurse, social worker, pharmacist, teacher or researcher and especially those of you that have people in your lives who have experienced seizures; all of you have knowledge and experience that could provide us with a lifetime of hope.
We are blessed to have the strongest, bravest and most amazing 2 year old boy in our lives! Thank you all for your support.
