Bodie’s Story
My son (11) was diagnosed with a developmental and epileptic encephalopathy (when seizures from epilepsy cause developmental delays). This is his story.
I gave birth to a beautiful baby boy named Bodie early on a September morning. He was my second-born. My oldest son was barely two at the time. The first few months were joyful yet exhausting and probably the only time we were a “normal” family after his birth. He was meeting all his milestones and was just a happy, energetic and bubbly kid.
At six months, we started noticing some odd behaviors. He would have these episodes, each lasting around 20-40 seconds, where he would stare off, move his mouth/tongue, clench his hand, and shake a bit. They happened around two times weekly. We mentioned them to his pediatrician, who said that they “didn’t sound like seizures” but prescribed a precautionary EEG and MRI. The one-hour EEG didn’t catch a seizure, but the report said it was “borderline abnormal” but nothing to worry about unless the MRI showed something. Well, the MRI didn’t. So we were sent home with a follow up with a neurologist scheduled for many months in the future.
By eight months he began to miss milestones. He wasn’t looking at us, showing interest in climbing or exploring, or making facial expressions. We finally got one of his “episodes” on camera. Now we were just waiting for the neurology appointment, which was still three months away. Well the episodes started getting more severe. They were longer, more intense, more frequent, and Bodie had a harder time recovering from them. He was now lethargic, eating poorly, cranky, and clumsy.
Five weeks before the appointment, he had a really bad one. His lips were blue and he had been in it for seven minutes when I called 911. That was the first of countless ER visits. When he got to the hospital, they pumped him full of medications that would leave him sleeping for most of the next 48 hours. The neurology appointment was bumped up to two days later. He was admitted to the hospital and this time, when they did an EEG they caught a seizure and confirmed interictal discharges (abnormal brain activity between seizures). He was diagnosed with focal epilepsy and subsequently placed on an anticonvulsant.
The medication did next to nothing. I mean, it made him constipated and lethargic, but it didn’t help the seizures. We were told “wait and see”. Two weeks later we were back in the hospital for status epilepticus-this seizure lasted nearly 10 minutes before they finally got it under control. We were given a different medication to try-this one made him cranky and also made his eating worse, but it did reduce the seizure frequency and severity-from 3x weekly for four minutes to 2x weekly for two minutes. After a month of that medication didn’t give us seizure control, another was added. This one had similar side effects to the first one he had been on, but was more effective.
By one year, he weighed only 17 pounds, had 1-2 seizures per week, usually lasting 2-5 minutes, and did not walk or talk. By two he was able to gain some weight and weighed 23 pounds, walked (barely) and had about a 10-word vocabulary. His seizures had begun to evolve into different types. He had focal impaired awareness, tonic-clonic and atonic seizures, Right before his third birthday he had a devastating seizure that I think he never truly recovered from. It started as a focal impaired awareness seizure for about six minutes. Then he went into a really bad tonic-clonic. By this time he had rescue meds at home so when the five minute mark came they had been administered.
But they didn’t work, so, at seven minutes, 911 was called. The suction machine and oxygen mask were in use but when the ambulance got there around the 10 minute mark, his oxygen saturation was around 88%. He was still seizing when we arrived at the hospital at almost 14 minutes. Three different meds were tried before the seizure finally ended close to 20 minutes after it had started. This would be his fifth emergency ER visit for a seizure, and probably his 30th status seizure. Meds were changed again.
But after that seizure, he was different. He lost most of his words and regressed back to diapers. He never recovered those things. I had a third son. He didn’t get the attention and care he needed sometimes because Bodie was having a seizure or had to be taken to a doctor’s appointment.
Life continued like this, not knowing if my son would wake up in the morning, seeing him lose a little of what he had worked so hard for with each seizure. By the time he started kindergarten, he had been on five seizure medicines and tried both CBD and gotten a VNS. CBD reduced his seizure duration and the VNS helped with frequency. He started school with a nurse that went with him every day.
Years went by. Dozens more missed milestones, medication changes, and hospital trips, hundreds of seizures. Challenging behavior took a hit at Bodie too. Screaming, throwing things, aggression, and self-destructive behaviors all became part of our life. Before a seizure it was worse. It came as a side effect of medications, too. But there were good moments too. There were good days when we would go somewhere as a family and Bodie would be happy, smiling. There were days where we could almost forget about epilepsy. Almost.
My son is 11 now. He still has seizures. Every week. They’ve changed and evolved over the years, but never left. They probably never will. I hate epilepsy. I hate the seizures, the medication side effects, the constant fear, the way it has tried to take my son away from me more times than I can count. I hate it more than anything and I desperately want a cure. For my son, and everyone out there like him. But while I wait, I have learned to live with it. I have learned to accept that my son may never be “normal”. That he may never be able to be alone or independent. I have learned that I have to face the fact that someday, epilepsy might win. My son has taught me so many things. He has taught me how to never give up, how to get back up each time you get knocked down. I am ever grateful to accompany him on his journey.