lydia's story

Written by Anonymous

My story is just another shitty version of all the others, but it goes like this:

I was turning thirty-nine when I had Lydia, our third child. Normal pregnancy, normal birth ... everything was "normal" until she was almost two years old. Then she started dropping, seizing: atonic, tonic-clonic, myoclonic, absence ... all of them came in a flurry with a fever. There had been some earlier seizure activity that I only recognized as seizures after we learned about them. We were admitted to the hospital after an EEG that the technician implied was "very, very bad" (shame on him!) From there she had an MRI, which left us still pondering the "why?" because everything looked "normal."

I remember thinking please don't let it be a brain tumor. I had no idea that epilepsy was not benign, so I was hoping for epilepsy over a brain tumor. Little did I know, a tumor might have been able to be removed. Little did we know, this F-monster—epilepsy—was here to stay.

In the hospital Lydia began taking Depakote, and it stopped her seizures. Ignoring the doctor’s recommendation I did no research and left with my baby who seemed to be doing fine on the Depakote. Our struggle was how to get Lydia to take the sprinkles and make sure it all went down. Within a week, the seizures returned: all atonic seizures at this point. She dropped like a marionette with its strings cut. There was also some suspicious "blinking" that we learned was subclinical activity, but the blinks lasted longer and looked like the start of a drop. We kept increasing the Depakote until we couldn't anymore—her blood levels were too high—so we added Keppra. The Keppra didn't help, but by this point her doctor had said things like, "if we don't get these seizures under control your daughter will regress and lose all of the skills she has now." Lydia was not talking yet—a warning sign that I had attributed to her being the third child. He told us that she would never go to school. He told us that the medications she was headed for had fatal side effects. He told us she likely had Lennox-Gastau syndrome. I started to research ... and lose it.

We decided to get a second opinion. In doing so we learned that our doctor had failed to tell us to bring Lydia for lab work prior to giving her the morning medications, to get a “trough” level. This was why her Depakote blood levels had kept appearing to be too high. We fired Lydia’s first doctor who was quite young, clearly did not have children, had a poor bedside manner and was not an epileptologist.

Increasing Lydia’s Depakote and removing the Keppra helped while we waited for the new epileptologist to start at our local hospital. Though he was also young, he had a daughter exactly Lydia's age, was very empathic and kind and was far more knowledgeable about epilepsy than the physician we had fired. Still, it took three years of trial and error, allergic reactions and catatonia to get adequate control of Lydia’s seizures, which eventually returned after each drug increase and each "honeymoon period." We had to make a very difficult decision to try Felbatol, which came with so many warnings including a waiver that said we understood the fatal side effects and would not sue the drug company if Lydia died. Meanwhile, Lydia was not losing skills, but she was not progressing much either. The hundreds of thousands of mini seizures, which looked like the start of a grand mal or myoclonic seizure, though lasted only seconds—not even long enough to knock her down—were wreaking havoc on her brain.

Lydia has idiopathic generalized epilepsy ... possibly—though without certainty—Doose syndrome. The majority of her seizures are myoclonic or astatic, so her diagnosis is Myoclonic Astatic Epilepsy (MAE). We are five years into the nightmare, which compared to others' journeys, sounds like a cakewalk. But I have learned that it doesn't work that way. Epilepsy spares no one, really, not even the ones whose seizures miraculously, spontaneously just stop. Lydia will likely not be one of those cases. Her EEG is a mess. She is developmentally disabled and I find myself whispering the word "retarded" when I can see that the new, politically correct designation doesn't mean anything to my parents generation ... and even to some well meaning contemporaries who want it to not really be "that bad."

I would not trade in Lydia for a new Lydia, nor would I refuse having another child if I had been warned this might be possible. But I live on a cocktail of antidepressants and anti anxiety medication. I used to be pro-therapy, anti-drugs until I had my first panic attack five years ago. I have only three, close pre-epilepsy friends who remain after a mass exodus of other friends I later realized I made all the effort to maintain. Our families both live thousands of miles away and are not very supportive. They want to make things better and don't understand that listening and validating are more important than trying to change the subject or focus on the positive. My two oldest children keep me from lingering in dark places for too long. I am a busy stay-at-home mama.

Lydia’s future depends on the discovery of new drugs, new therapies—a cure. It is unlikely that her seizures will relent. This is my story, Lydia’s story. In the scheme of that which is epilepsy, I realize that we are actually the lucky ones. No matter. It still sucks.

photo by Michael Kolster