Jonathan D.'s Story: Parent's Letter Project
Seizure disorder- Jonathan's mom
Dear parent of a child with a seizure disorder,
Jonathan was a happy baby filled with energy and life, but was frequently sick with ear infections and respiratory illnesses. At 13 months of age, Jonathan had his first and only prolonged febrile seizure. The seizure lasted over an hour and his temperature was 106 degrees. How could this be? He was running and playing that very morning and even went down for a nap. Time seemed to stand still during this event. However, after two days in the hospital, Jonathan was back to his normal self climbing out of his crib and making us laugh.
He developed typically and then the world dropped out from underneath us a year later. Jonathan developed complex partial seizures, but at that time no one was sure of what was wrong with our son. He just did weird things, had random movements, and his lips turned purple. It took many years before we found our way to Children's National where we met Joan Conry, MD, and the rest of the epilepsy team.
For years, Jonathan's seizures went uncontrolled due to allergies and significant side effects to medications. We worked as a team and realized that Jonathan knew more about what he wanted and how he felt with these medicines then we ever realized. Then one day in the summer of 2000, Jonathan asked us and Dr. Conry about surgery and other options to control his seizures.
I swore that I would never go down this road less traveled, but our son wanted to try. We learned that Jonathan had what is called mesial temporal sclerosis and if treated with surgery early on, would have great success in controlling seizures. On November 13, 2000, Jonathan had surgery to remove an area of his brain (the amygdala and hippocampus). There were many tests beforehand to decide whether Jonathan was eligible for surgery. This was a difficult decision to make that no one could make for us. But the support and care given gave Jonathan back his life. It didn't come easy. He came from a time of having daily seizures to slowly not having any.
It is now 2011 and you may wonder how this is relevant to you. I have been in your shoes as a parent. I held my son each day when he had a seizure. Even though they were short and frequent, I thought they would never end, but they did. Today Jonathan is 22 and has been seizure-free for a number of years now.
I want you to know that there is hope. Although each day may seem like a daily struggle, there are others going through what you are. I do realize that not everyone is eligible for surgery. With all my heart and soul, I hope that a cure can be found for our children and for other families. When our children have seizures, the whole family is affected. So with this, I tell you seek support from all around you, including family and friends. Educate others. With knowledge, there is less fear of the seizures. Go with your heart. Hang in there. It hasn't been an easy journey for Jonathan, but this spring he will be graduating with his peers. He holds a part-time job and is looking forward to finishing school and getting his bachelors degree.
Jonathan's mom, Julie