Our life with epilepsy

Epilepsy. It is a strange word. The first definition on Google is:

a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

Maya had her first seizure at the age of two and a half. Kim and I thought she was dying then. We were panic stricken. Her tiny body arched and convulsing. By the time the EMTs arrived, she had stopped seizing. We rushed her to the hospital. And our world changed.

After trying several medications that didn’t work, we found Trileptal (Oxcarbazepine). Twice a day for the next ten plus years, she took this medicine. It worked for so long that we stopped giving it to her in the spring of 2014. Kids can grow out of seizures and we thought maybe she had. The seizures came back.

Our battle with epilepsy took a turn in the spring of 2015. Maya started to go through puberty. Her hormones began fluctuating every month. And this was enough to bring on a cluster of seizures. A week before her menses, she would seize repeatedly. We tried everything to stop them. But we could not.

We lost count of how many times we were in the emergency room. Once the seizures started, they would keep coming. Some months a dozen or more wracked her body.

Her seizures were violent and would happen without warning. And so we lived in a sort of suspended state of panic. Trying to keep her safe. Sometimes failing.

And then they would stop. And we would try something else. And wait. And the seizures would come. The relationship between hormones and seizures is not well understood. This type of epilepsy has a name — catamenial epilepsy. But it does not have a cure. We worked with doctors to try to stabilize her hormone levels. The first month we added a regiment of progesterone Maya had her menses without seizures. Kim and I cried with joy. But then, two seizures came just after her menses that month.

We arrived at a process that seemed to at least keep us out of the ER. After Maya’s first seizure, we would give her Diazepam (Valium) every six hours. This reduced the number of seizure by about half. But even after the seizures ended, it took her several days to recover. Last year she missed 35 days of school.

We tried to map where her seizures were starting in her brain. Three different times we went to the Children’s Hospital of Philadelphia for electroencephalograms (EEGs). They place sensors all over Maya’s head and captured her brain activity during seizures. They still could not tell us exactly where the seizures were coming from.

In August of this year, Maya went through an stereoelectroencephalography (SEEG). The electrodes go through tiny holes drilled into the skull. She is then monitored while seizing. The doctors were able to determine where they thought the seizures were coming from and recommended a right frontal lobectomy.

The right frontal lobe is a big part of your brain. And the odds of being free from seizures after the procedure were not great. There was a 50% chance of seizure freedom in the first three years and 30% after that. It seemed like a big risk for an uncertain outcome.

So we wanted to exhaust all other possibilities first.

We tried to stop her hormones altogether with Lupron. And then add the hormones back gradually via tablets and patches to even out her hormonal cycle. We reasoned, if the spikes and valleys of her hormone levels were causing the seizures, getting rid of those spikes and valleys would make them stop.

And then Kim went to wake Maya on the morning of Monday, November 6, 2017 and found that she had died in the night. She had a few seizures on Friday and Saturday but we thought she was done for the month. What happened?

We don’t know.

This has a name too.

Sudden unexpected death in epilepsy (SUDEP).

And everything they say is true. It feels like we are falling, or have been hit by a bus, or the rug has been pulled out from beneath us.

Maybe I am lucky to have never experienced grief like this before. But the pain and loss is overwhelming.

Everything has shifted. Trying to find meaning in things is hard. Trying to make sense of any of this is impossible.

But we will go on, because we have to, for each other.

We held a celebration of Maya’s life ceremony on Thursday, November 9. We found a space but had no idea how many people would attend. Kim woke early one morning and wrote the narrative for the slideshow that we shared together. Maya’s school closed so that her friends and teachers could attend.

More than 400 people showed up. It was standing room only. To feel the love in that room was something I will not forget.

We set up a scholarship fund for the camp Maya went to every summer. It raised more than $23,000.

The support of our friends, family, and community has been incredible. We know that we are loved.

So what now? I know that I am trying to be a better person. Take care of myself, be kind, focus on what matters.

And take things one day at a time.

And remember Maya.