Nearly 3.4 million Americans<\/a> live with epilepsy. For him, epilepsy was just his latest health condition \u2014 Mark and I had helped him through nine major surgeries, many emergency room and intensive care unit stays, and multiple infections. We had learned to manage his ostomy<\/a> and perform urinary catheterizing every few hours. <\/p>\n There had been plenty of scary days, like when he had an infection after major spine surgery. As I clutched our son in the emergency room and Mark sat on a plane flying home from a work trip, we read on our phones that around 1 in 5 people die<\/a> when they have a spine infection. But, aside from the day of a subsequent major surgery, after which he had yet another scary post-surgery infection, I had not panicked like this before. <\/p>\n A few weeks later, genetic testing prompted by this seizure showed that my child has an SCN1A mutation. A footnote in the testing said he is also on the spectrum for a rare, genetic form of epilepsy called Dravet syndrome<\/a>. However, because he was on the mild end, his neurologist didn\u2019t focus on it. <\/p>\n His first prolonged seizure also prompted a prescription for a nasal spray seizure rescue medication. From then onward, someone \u2014 me, Mark, or a teacher at school \u2014 was required to have eyes on him at all times in case a seizure began and we had to administer the spray. We always have a dose nearby at home or in our backpack of supplies when we go out. There are two doses at his school. <\/p>\n During his next seizure, we used the rescue medication, but medics still had to provide additional medication to stop the seizure at around 30 minutes; another dangerous seizure. As a result, our son\u2019s doctor said we needed to keep him within a few minutes of 911 help, always. <\/p>\n It was true, because sometimes his rescue medication stopped the seizure, and sometimes it didn\u2019t. There were 17 times over the next 18 months that we called 911 because we needed medics\u2019 help to administer more medicine and oxygen to save his life. <\/p>\n Because of the distance restriction, many places became off-limits. Before I agreed to go anywhere with my son, I looked up the closest fire station or hospital, and many times, we had to stay home because of the distance from emergency help. We couldn\u2019t fly, take a train or even get on the underground route of the local metro. Our world shrank. <\/p>\n
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The author’s two children on a recent rural outing to pick apples and hike.<\/p>\n