Sunday, February 15, 2009

Epilepsy Meds: Not Just for Breakfast Anymore!

I’d been dreading Curlytop’s visit with her developmental specialist. There were many issues to discuss, but one topped the list of importance: whether or not to give her medication for her absence seizures.

In preparation for the appointment, I read the Johns Hopkins book, Seizures and Epilepsy in Childhood: A Guide, which introduced me to an entirely new level of parental horror. Did the “café au lait” mark on Curlytop’s leg signify the presence of a genetic disorder that, even as I read, was planting tumors in her little brain? Every page seemed worse than the previous, but I couldn’t stop reading.

That was before I even got to the chapter on anti-seizure medications. If you are a person who thinks epilepsy is scary, let me assure you that the condition is unicorns and rainbows compared to the medications that treat it. Watching someone have a seizure is frightening, but so is giving your child a medication that can destroy her liver or damage her bone marrow. How about dosing your child with a substance that will cause “gum overgrowth” that must be cut back by the dentist? Or drugging your child with a chemical that can distort her facial features and cause extensive body hair?

Thankfully, it wasn’t that drug that our specialist was considering. It was a different drug; one that is milder, but known to make kids “dull,” “drugged” and “drowsy.” Many children taking this particular drug experience difficulty in school and have a tough time focusing. Considering that Curlytop is already struggling with developmental delays, I became paralyzed with uncertainty every time I tried to decide whether to try medication for her seizures or not. I simply couldn’t make a decision, afraid to make the wrong one.

We’ve had two neurologists and one specialist in developmental issues tell us that Curlytop is most likely experiencing absence seizures (also known as petit mal seizures). I say “most likely” because she’s had three normal EEGs. The EEG results don’t rule out epilepsy; they just mean she didn’t have a seizure during the test.

At times, I doubted my maternal instincts. Maybe they aren’t seizures, I reasoned. Just because she zones out for a few seconds every few hours doesn’t mean she has epilepsy. Ironically, the first random page I turned to in the Hopkins book was headed, “Is It Daydreaming or a Seizure?” The following paragraphs gave helpful tips on telling the difference: daydreaming typically occurs when the child is bored or tired, whereas seizures can interrupt a conversation or even mealtime; a daydreaming child can usually be “brought back” by calling her name or a touch, whereas a child having a seizure cannot.

I discussed with every person Curlytop spent time with what absence seizures look like. I asked them to log any “spells,” and to include the time of day, how long it lasted, and what she was doing at the time. The babysitters logged spells from three to thirty seconds, during mealtimes and playtime. One of her therapists noted a spell which lasted about forty-five seconds during a gross motor skill exercise that involved throwing and catching a ball. I personally logged spells during bathtime, “tickle” time and other rowdy activities. I developed a test for determining whether each spell was daydreaming or a seizure. I’d say her name. If she didn’t answer, I’d touch her face, near her eye. If she didn’t flinch or blink, I’d log it as a seizure.

When I turned my logs in to Curlytop’s neurologists, they wanted to start her on medication right away. Since no one had “caught” her having a seizure during an EEG, the official diagnosis remained “probable absence seizures,” but our specialists recommended trying anti-seizure meds “to see what happens.” The theory was that if she took the meds and had fewer spells, she had epilepsy; if not, she had something else wrong with her.

“But what will these drugs do to her if she doesn’t have epilepsy?” I asked. The answer wasn’t terribly reassuring: She wouldn’t experience any side effects that epileptic kids wouldn’t. “But have you SEEN the list of side effects?!” I asked for some time to consider the option.

Then I stalled.

I waited as long as I could. I expertly pushed the follow-up appointments out and dodged questions from social workers while wondering if my failure to give Curlytop a medically-recommended dose of poison could be determined grounds to stop the adoption process. What kind of mother is she? She’s withholding medical treatment from the child in her care! Call the emergency shelter care home… we’re going to pick the kid up and get her appropriate medical care.

“Curlytop’s seizures aren’t the big, scary kind,” I explained in defense of not medicating. “She’s just sort of… gone… for a few seconds. I mean, she’s three years old. She isn’t swimming alone, or crossing the street alone, or driving a car… And there’s a good chance she will grow out of them,” I reasoned. “I think we should wait.”

The doctors and social workers agreed, for a time, and I relaxed, confident I was making the right decision. Then our developmental specialist explained that seizures, even absence seizures, are very disorienting. The person who has the seizure often requires a period of readjustment to figure out where they are, what they are doing, and what’s going on. This period of readjustment, he explained, could be affecting her ability to learn and, in fact, could be the very root of her developmental delays.

I’ve had one documented seizure in my life. I was twenty-three years old, and I was having a glass of wine with my boss in the lounge of the restaurant in which we worked. He was talking to me about being a father, and I was politely listening, but his voice was sounding farther and farther away. “Pete,” I said, “Something’s wrong. I can’t feel my hands or feet and everything sounds really distant.”

Then, according to witnesses, my head fell forward and I had a large, scary seizure of some sort. Pete caught my head before it hit the bar and somehow I got moved from my barstool to the floor, but I have no idea how any of that happened.

When I regained consciousness, a woman was screaming in my face. “Hello? HELLO! Are you okay? I’m an EMT. Do you know where you are?” I didn’t know. My co-workers were gathered around me, but I didn’t recognize any of them. I’d peed all over myself and I felt so hot, I started taking my clothes off. Bit by bit, my surroundings came into focus and everyone was insisting I needed to go the emergency room. Did I want them to call an ambulance? No. I wanted them to call my boyfriend. He was out of town, someone reminded me. I told them to call my ex-husband instead.

In the hospital, I was subjected to a whole lot of questions and tests that revealed very little information. Epilepsy couldn’t be ruled out (Would I lose my driver’s license? Was there a chance my son could have inherited it from me?), but it was more likely that I had a convulsive syncope, or “fainting seizure.” While not terribly common, some people do experience convulsive seizures when they lose consciousness. These seizures are not considered particularly dangerous, and they are not considered epilepsy, since they are only likely to recur when and if the subject faints.

While my seizure was not caused by epilepsy, I clearly recalled the experience of disorientation and fear that accompanied it. What if Curlytop is going through that experience ten or fifty or a hundred times a day? It’s no wonder she isn’t learning… If her seizures were the absence variety, she shouldn’t have any confusion, just gaps in memory and consciousness. However, if her seizures were complex partial seizures, which also involve staring, the confusion factor would be incredible.

Still, I struggled with the decision. To medicate, or not to medicate? That was the question, and it was a big one. If medication could alleviate Curlytop’s learning delays, who was I to deprive her of the opportunity to grow and develop, without additional challenges? Still, I couldn’t get past the irony that the answer to her developmental delays could rest in a medication that was known to cause learning problems in otherwise “normal” children.

Finally, I relented. At the next appointment, I decided, I would agree to medicate Curlytop. The appointment was two months away, and I would carefully track her seizures, as well as her learning progress, so we would have a baseline for comparison of any side effects or changes.

Then, the most amazing things happened. Suddenly, Curlytop’s developmental progress increased so dramatically and so quickly that it we couldn’t keep up with her. Her noticeable seizures went from several per day to hardly ever. By the time our most recent appointment arrived, I had virtually no seizure logs to show our specialist.
“Hmm… it’s possible she’s outgrowing the seizures. Let’s not medicate, and see what happens,” he said.

Isn’t that what I was saying all along? Always trust a mother’s intuition.


  1. So glad you took a wait-and-see attitude. I have worked with children most of my adult life and have seen too many parents rush to give their children the "miracle meds" that are going to solve all their problems. Only to discover that those meds create problems of their own.

  2. My heart goes out to you - - the only thing I can say is keep on doing your own research. The internet gives us a huge amount of resources that were not available just a few years ago, and it's amazing what we can find out that doctors don't know. Plus, only a mom or caregiver can become the world's expert in that one child. Trust your judgment! P.S., when I hear my boss's voice getting farther and farther away and the world starts spinning . . . I'm pretty sure it's an absence seizure induced by his presence . . .

  3. Have you ever thought of trying Chiropractic care? It is a drugless and natural way to help with epileptic seizures?

  4. Rebecca, I hadn't heard that chiropractic could help. Thanks for the suggestion!

  5. Hi, how old was your child when this happened and what kind of delays were involved?

  6. Hi, Anonymous.

    Curlytop has had the "spells" since she was placed with us at seven months old (and probably before that). Since she had other developmental delays that were not noted in her social services file, it did not surprise me that there was no mention of them when we took her in.

    Since she had been removed from her parents' care for abuse issues, at first I thought it was a reaction to trauma, but as her other trauma-related behaviors faded away (clenching of her little fists, grinding her teeth with severe bruxism, etc.) and the "spells" did not, I decided to seek out a medical opinion after Curlytop's sensory therapist noted that they looked a lot like absence seizures.

    I have a cousin who, as a child and into her teen years, had absence seizures, so I sort of knew what they looked like, but my tendency to relate "off" behaviors with trauma (at first) overrode my "trained" eye.

    Curlytop just turned four, and the seizures are decreasing. I'm really glad we didn't rush to put her on medication that could have contributed to her learning difficulties. She already has enough challenges as it is. I'm hoping she will completely outgrow them in the coming years.

    You ask about delays, and I'm not sure exactly what you are referring to, but at one point Curlytop had separate physical therapists, speech therapists, cognitive therapists, sensory therapists and occupational therapists. We were up to about fifteen standing appointments a month.

    Now, she's aged out of the birth-to-three program in our state, and she is getting services from the school district through a special education classroom.