Patrick is one of the most funny, loving, independent, energetic and endearing four-year-old boys that I know. He loves a thrill, has a mischievous smile and is happiest when he is running wild. When Patrick was an infant and toddler he had febrile seizures. It was stressful but we did not think too much of it because it does run in my family. Patrick had his first non-febrile seizure nine months ago, one month before turning four.

Looking back, it appeared to be a complex-partial seizure so it was a bit difficult to determine exactly what it was. From January when he had his first one to April, when he had a 48 hour EEG, he averaged one seizure every two weeks or so. They happened at home, at school and out and about. Thankfully, Patrick was already in a preschool intervention class at Sand Hill Elementary School in Effingham County, Georgia for autism and developmental delays. His teachers were very familiar with seizures. His school has been a blessing from God throughout all of this experience.

When Patrick had his EEG, he had a complex partial seizure. He was diagnosed with Complex Partial Epilepsy. We were told that it was very common, easily treated with medication and he would most likely outgrow it. We were very relieved and started his first medication the next day. Since then, he has tried seven medications and is currently on four.

Throughout the last six months he has developed many other seizure types along with the partial seizures, including tonic, atonic, myoclonic, absentee and tonic clonic seizures. The frequency has increased to several bigger seizures during a week’s time and several absentee seizures a day. His behavior has become difficult and he has become quite hyper. We are very thankful though because he still does have some good days.

The hardest part for us is that his main trigger is heat and physical activity. He has seizures in all environments, but the really big ones have only occurred when being very active. Because of this, his time outside and physical activity has been very limited. He has gone outside to play with his classmates maybe seven times since school started in August. He is only aloud outside for a short time span and three of those ended with Diastat and EMS. Difficult for a VERY active little boy!

We are at the beginning of this journey and are awaiting answers and success with treatment. My heart goes out to those whose children are suffering far worse and longer than Patrick has. We are fervently praying for the “magic potion”. We do feel we are on the right track with a new Epileptologist and will be having an MRI and another EEG very soon. She has mentioned the possibility of Dravet Syndrome but no definitive answers yet. We know God has blessed us with a fantastic friends and family support system and school for Patrick. They love him like he is theirs. For that we are thankful and eternally grateful.