This blog post was written by Amber Abrams. Her son passed away from SUDEP and like us, they had never heard of SUDEP before. Thank you Katherine for sharing your story about your beautiful son, Nathan.
Epilepsy runs in my family. My father had it as an infant up until the age of 17. I started having my seizures when I was around 12 years old, and I grew out of them around the age of 19.
They diagnosed my daughter when she was 5 years old, after having her 3rd seizure. She is 19 years old now, and still taking medications and has breakthrough seizures every now and then.
My son, Nathan, wasn’t diagnosed till he was about 8 years old. His seizures, while on medication weren’t as controlled as my daughters were. He had lots of seizures, and most of his occurred at night. The doctors never told m
e that Epilepsy could kill him. The doctors never mentioned SUDEP. If they had, I would have taken precautions.
He was on Keppra, and in addition to his grand mal seizures, he also had behavior problems as well. He ha
d a low attention span, frequent outbursts, fighting with teachers and other kids.
I took him to a therapist who put him on ADHD meds and we got him into a special program at school. But nothing seemed to work. He frequently spaced out, and didn’t pay attention. He had suicidal thoughts, and started hallucinating. Also, he started having non epileptic seizures. They would last about 10-20 minutes at a time. I had him admitted to a mental institution because I feared he would hurt himself. He was in there for a month. He was dis
charged December 24th 2012. We celebrated Christmas Eve and Christmas day with my family.
Christmas night, we came home and said good night. He went to sleep and never woke up. I went in the next morning to get him up for the day, and found him cold in his bed. It was determined by an autopsy that he suffered from a seizure in his sleep, and because he was sleeping on his stomach, he suffocated.
I started working with the Danny Did Foundation as an Ambassador, I don’t want anyone else to suffer the pain that my family and I have gone through. More people need to be aware of the dangers and SUDEP.
I have made it a personal goal to honor Nathan by sharing his story. It is the only thing that gets me through the pain.