To the Doctor Who Asked If We've Tried Anti-Seizure Meds for My Son's Seizures

Dear Doctor,

I am writing to you because I cannot get past something you said while my son Andrew was under your professional care. You were his anesthesiologist for a dental procedure he needed to have that required a little more care than usual, so we scheduled to come see your team in the hospital. We were afraid. Any visit to the hospital, especially one requiring anesthesia, carries our nerves into overdrive.  We were there early, following doctor’s orders not to give Andrew food, drink or his usual morning medicines. My primary focus was to keep my son calm and happy and to make this as easy as possible for him.

We met you early on, and you shared with me what Andrew’s care plan would be. I answered your questions, and I shared with you a little about my son. In particular I knew it was important to let you know it would not be uncommon for you to see a seizure in the time he was under your care. He is diagnosed with Lennox-Gastaut syndrome (LGS).  I told you Andrew normally has 5-10 seizures every single day. I
found your response to be one of the most ignorant, insensitive and callous ones I have heard from any medical professional yet.

“Really? Have you seen a neurologist? There are anti-seizure meds out there. That’s a lot of seizures for one day.”

How you communicate with your patients and their caregivers should be a top priority. I didn’t expect this from you. I entrust you with my son’s life. You are a medical professional, one who sees a wide array of patients. We hold doctors to the highest standards. If you, a trained professional, aren’t aware of epilepsy, then so many others aren’t either.

LGS is a huge part of our lives. We deal with it every single minute of every single day. Seizures strike at any moment. They take my son’s breath away, have robbed him of so much, and also leave me frightened and forever on edge.

Yes. We have seen a neurologist. Actually Andrew was only one day old when we met our first neurologist. That was 17 years ago when he turned blue right in front of me and the nurses who were helping us with breastfeeding. Over these years we have seen our own neurologist religiously. We have visited other neurologists here in our city, and in other cities and even in other countries just to do anything to help Andrew and stop his debilitating seizures. We have seen many neurologists.

I know something about anti-seizure medication as well. Yes. There are lots of anti-seizure medications, but for those children diagnosed with LGS, finding one to stop seizures or even one to help a little is nearly impossible. Andrew has tried more than 15 medications, even special diets, and has been considered for brain surgery. As part of the medical history you had already reviewed you could easily see Andrew currently takes three anti-seizure medications, and yes unfortunately, he is still seizing. Seizure medications and their side effects are something I know much too much about.

If meeting my son and hearing his battle with LGS has enlightened you or anyone else who reads this just a little, this encounter will be worth it. He has commanded awareness and knowledge. If you want to take a step further, please visit this website: www.lgsfoundation.org. If by meeting him, you may take more care in what you say and speak with the utmost compassion to vulnerable families such as ours, then we’ll have gotten something out of this exchange.

Parents and their kids who face serious medical issues have been on a life-changing journey. Please don’t ever forget to consider the knowledge of the patient and the caregiver.

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Stock photo by takasuu