Our son, Emmett Frederick Ross, is eight years old and was diagnosed with Epilepsy shortly after his 1st birthday. Emmett’s early seizures were frequent and severe. He would have great difficulty breathing and his seizures would not self-correct. At our first EEG/sleep study test, our neurologist determined that Emmett was having up to 15 clinical and another 15 subclinical seizures a day. We were particularly concerned about the life-threatening and not self-correcting nature of Emmett’s seizures. The longer his seizure raged, the more difficult it is to break which if untreated could lead to “status epilepticus” a coma and even death. Our only weapon (absent a hospital visit) against this was Diastat, an emergency seizure medication which quickly breaks his seizure. It is a critical medicine for Emmett and wherever he goes, Diastat follows.
Emmett went through a laundry list of anti-seizure medications hoping to reduce/eliminate the frequency and severity of his seizures. We struggled with the side effects of nausea, drowsiness, lost appetite and listlessness while waiting for the “anti-seizure” part to kick in. We kept trying new medicines and dosages to find the right recipe for Emmett. The two big breakthroughs for Emmett’s seizure activity came after the introduction of Zonagran at age 4 and more recently Onfi at age 6. Emmett’s seizure activity dropped considerably after he began taking Onfi.
Today, Emmett goes to a truly amazing school in Trumbull called St. Vincent’s School for Special Needs and now (knock on wood) his seizure activity is counted in months rather than in days. But like every parent of a child with Epilepsy, we never know when the next one will happen so we continue to work closely with family, friends, teachers, doctors, state and town officials and even legislators to develop policies, practices and awareness to better protect Emmett and other children who suffer from Epilepsy.
To his end, my wife and I have been working closely with EFCT and CT state legislators over the past two years to introduce legislation to help protect CT school children who suffer from Epilepsy. Current state guidelines allow only a school nurse to administer Diastat during school and if a nurse is not available, then 911 must be called. Our legislation is designed to fill in the emergency care “gap” when a nurse is not immediately available and a trained, volunteer school professional can step in to administer Diastat in an emergency situation. With the help of EFCT, we will re-introduce this bill into next year’s legislative session. Please help to support it!
Our boy, Emmett, loves music, the wind on his face, to wrestle, to be tickled and is the most pleasant little fellow to be around. He is our comfort and our joy.