A Letter to My Son's Epilepsy Specialist

© Antonio Guillem | Dreamstime.com

Dear Dr. _____,

As you know, my son has had epilepsy for the past 2.5 years. And as I told you upon meeting you yesterday, he has never had a neurologist. You are his first.

We just moved back to the U.S. from the Netherlands, where his epilepsy was overseen by his pediatrician—a neonatologist by training, so she knew a lot about the growth and development of children born prematurely, as my son was, and a lot about the developing brain. But she wasn't an epilepsy specialist, and for various reasons, I had difficulty getting one for my son in the Netherlands. 

So, I relied on the advice of his pediatrician. 

She monitored the safety and level of my son's twice-daily epilepsy medication and raised the dosage as needed, but my son continued to have seizures once every few months. She considered these so-called break-through seizures to be normal and acceptable. Not having a more specialized doctor to turn to, I believed her.

But yesterday, you told me that you didn't agree. 

You said that the goal for my son should be zero seizures and that there are various ways we could try to achieve that goal.

You advised me to start by incrementally increasing the dosage of his current medication over the course of 6 weeks, and you gave me a schedule for exactly how to do this.

You ordered an EEG because that would help you pinpoint the type(s) of seizures my son has been having. You said that depending on the type of seizures, certain medications may be better suited for him than others and we may need to switch him to a different one.

You said to schedule a follow-up visit for 6 months from now but if my son has any seizures in the meantime, to come back sooner because something needs to change.

Thank you for giving me hope of a seizure-free life for my family. My son's seizures, though infrequent, have been challenging and scary: They usually happen at night after my son goes to sleep, they never stop on their own, and they almost always land him in the emergency department.

We can't let him sleep alone. 

We must be extra vigilant when we travel. For example, we must always bring his emergency anti-seizure medication with us, even on walks, and we travel only to places with decent hospitals nearby. 

Flying across the Atlantic Ocean has become somewhat terrifying. What if he has a seizure on the flight? What if his emergency medication doesn't stop it? What if we can't make a quick landing for emergency medical care because there's nowhere to land? Unless his seizure risk significantly decreases, we're unlikely to travel back to Europe, where we have family and friends.

These are far from the worst things imaginable, but they have affected our quality of life.

Thank you for believing that we can do better.

Sincerely,

A Grateful Mom