Our KCNQ2 BFNE journey
Peyton was born on Oct 15, 2016 via C-section. He was a beautiful baby, comparable to a doll. After his first cry, he fell silent. We didn’t think much of it. The next day, when my husband went with him to get him circumcised, he promptly came back and told me “Peyton had an episode. But don’t worry, they think it’s acid reflux.” They had taken him to the nursery to watch him. The next episode he would have wasn’t acid reflux, it would be a seizure.
I remember my husband sitting on the bed beside me and telling me, “Peyton is having seizures. They aren’t equipped to handle him and are transferring him to another hospital.” My heart sank. My own history with epilepsy had made this a possibility. I had always hoped my children would somehow beat the odds. They had, until now. And like him, I had no idea why I had them, I had just been born with them. I knew all too well the path that my son would have to walk and I was terrified for him.
Along with the fear came guilt. I had done nothing wrong I know. And it was not my fault. But I had done this to him. I had unknowingly done this to my child. My husband would quickly reassure me and tell me it wasn’t my fault. And had not done anything wrong. It was just the way it was. Later that same day, he would be transferred to Sutter Medical Center in Sacramento. After an early discharge, we raced to meet him. We would later be able to get a room at the Ronald McDonald House which was a lifesaver for the two of us. They were called tonic-clonic seizures. He would turn his head to the side, cry out, stiffen and hold his breath throughout it. The apnea was the worst part of it. He would turn blue afterward and the nurses would have to give him oxygen and my beautiful baby boy would turn pink again.
He would be given medication after medication all in an effort to treat the seizures. Nothing seemed to work, they only made him sleep. He was at one point having a seizure on the hour, every hour. He would begin a battery of tests all to rule out anything and everything they could think of. He had a spinal tap, MRI, and so many different blood tests we would later need a blood transfusion. On more than one occasion, he would be hooked up for an EEG for up to a week at a time.
A few days after he was admitted, the doctors brought to us the possibility of something called benign familial neonatal seizures. They said it wasn’t a diagnosis, but a possibility. It was a sign of hope. We would take turns holding him. Even though he was in a semiconscious state, we still held him, talked to him, even sang to him. Anything to let him know he was not alone and loved. Our family and older children would also come to see him.
We felt helpless and I tried my best to give the round of neurologists and specialists that came to see him what little help I could. Telling them my own story in the little hope it would help my son somehow. Nearly 2 weeks after he was admitted we had a celebratory moment when we were able to give our son his first bottle. Up until then, they were afraid the seizures would cause him to choke on anything we tried to give him. He had been fed intravenously through a feeding tube. He was also awake and aware of his surroundings, and of us. We were thrilled. It was a step in the right direction.
At 3 weeks of age, a clear official diagnosis. Kcqn2. We felt relieved. There was a light at the end of the tunnel. It wasn’t over yet. The doctors wouldn’t release him until his seizures were at a minimum and he had been weened off the majority of his medications. We were warned there could be other problems associated with it. We were given a laundry list of rules to follow. Medicine to be given in a timely manner. We took him home. After 31 days, we took our baby home.
Peyton would suffer through 2 more seizures at home, but he has adjusted well since. He takes Tegretol, the same medication I take. He does have problems sleeping, which is something some kcqn2 patients have in common.
At 3 years of age, he is now a loving, happy handsome boy. He is learning to talk in sentences, plays with his toys and is the light of our lives. Shortly after he was sent home and our lives were going back to normal, I was tested. I had spent 35 years of my life not knowing why I had seizures. Now, I had an answer.
This has turned into more of a story of the both of us, but if I had not had the experiences I had previously, then my son might still not have been diagnosed. He still would not have any answers. I had never really thought that my history of seizures was that big of a deal. It was just something that I had to go through. Now seeing it through the eyes of my son, I know differently. It’s a part of me. It made me who I am today.
If telling our story can help one person who doesn’t know, then it’s been worth it.