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.

How the Phone Thwarted My Birth Control (Or... Why Disconnecting the Phone is 95% More Effective Than Vasectomy)

“What are you doing for birth control these days?” Our family doctor was going through his checklist of routine questions at my last exam.

While I found it amazing that he didn’t have a record of my answer for the prior three years, I obliged him with a fully informative reply. “Well, we were using vasectomy, and that was pretty effective for a while, but now I think I’ll have to get my phone disconnected if I am going to prevent any more unplanned children.”

My doctor, bless his heart, offered his well-thought medical response to my report. “Huh?”

I should make clear at this point that I am the mother of seven children. Though some assume that my jumbo-sized clan is perhaps proof that my husband and I need a different form of recreational exercise, I got off easy (no pun intended) – I only had to give birth one time.

Had that single birth resulted in seven little precious souls, I wouldn’t be writing this piece now. I’d have my own reality show. It would have the chaos of Jon and Kate Plus Eight and the substance abuse of Intervention. Luckily for me, I was spared the fame and notoriety. Being chronically broke builds character in a way that celebrity just can’t.

After thirty-seven hours of labor and nearly three more of just pushing, my son was born. I swore to my first husband that I would never go through that again and, true to my word, I never did. I was happy to parent my boy as an only child. After all, when you only have one kid, you are the perfect parent. You relate closely to your child, one-on-one. You carefully explain everything. When my son was a toddler, I gently corrected him… “We don’t run in the house, sweetheart, because we could trip and fall and gash our heads open on the sharp edge of the coffee table. We’d have to go to the hospital and get stitches. No one likes that, do they?”

Fast-forward five years. Five children are whizzing by me at speeds bordering on breaking the sound barrier. “We don’t run in the house, darlings, because…” Zoom! Slam! “… because we could trip and fall and…” Whoosh! Crash! “DAMN IT, STOP THAT RUUUNNNNING!”

It wasn’t that my parenting philosophy changed. What changed was the fact that I went from having one child and being the perfect parent, to having five children and fighting for my sanity. It started with a phone call.

My first marriage fell apart as only young marriages can. I think we both woke up one day and finally decided what we wanted to be when we grew up, and found that we wanted very different things. Meanwhile, Mr. Wright was producing four children with a woman who would one day wake up and decide that what she wanted to be when she grew up was to be a carefree single gal without the pesky encumbrance of raising kids .

Our divorces happened at about the same time. Mine turned into one of the most complex custody battles in the state at the time. Believe me when I tell you it was horrific, and included such glamorous highlights as contemplating smuggling my child over county lines to circumvent an ambiguous court order. By comparison, Mr. Wright’s custody battle was simple – his wife “punished” him by leaving him with four kids.

In the end, Mr. Wright and I both ended up with primary custody of our respective children. We existed separately as relatively content, if not capable, single parents. When we met, I was ready for a fling that would fit into my non-custodial hours. Why not? He told me he had four children; I called him a liar and kissed him.

He lived three hours away. It was the perfect relationship. He’d visit me when neither of us had kids at home, and he wasn’t around to bug me all the time, you know? He wasn’t around to mess with my relationship with my son. He wasn’t around to interfere with my job as a restaurant staff manager. Time with Mr. Wright served as my reward for being a devoted mommy and manager. When I was with him, I could relax and have fun.

That perfect relationship lasted exactly two months.

Eight weeks after we met, an arsonist burned down my restaurant. Two days after that, my roommate, another single mother, told me she was moving out of our shared six-bedroom house to live with her boyfriend. Since she had three children versus my one, she paid two-thirds of the household expenses. I quickly calculated that, with no job and no income, I could not afford to stay in the house.

Just like that – in one week – I became unemployed and homeless. Mr. Wright called one low night while I was doing the dishes. I cried and sobbed through my story. When I finished, he said, “You could always move in with me, you know.” I laughed at his little joke and felt a little better. Things would work out. Certainly, I would find another roommate and gainful employment.

Three weeks later, after an exhaustive job/roommate search, I packed everything I could into my Ford Probe, squeezed my son into the front seat, and drove to Mr. Wright’s house. When he opened the door, I said, “I hope you were serious…”

Fast-forward four years. Mr. Wright and his beautiful, talented wife (that’s me!) were minding their own business, raising their five high-spirited children, when the phone rang. The caller was the State of Washington. Well, it was one of their social workers, anyway. She informed us that our nephew’s daughter had been placed in foster care and asked if maybe we, as family members, could step in and take care of the seven-month girl for a little while, “just until the parents get on their feet.”

Of course, we would. Who wouldn’t take care of a baby that belongs to the family? Who wouldn’t step up to help for a little while? We sailed through the background checks and home studies and welcomed our little great-niece into our home.

We quickly caught on to the fact that no one with any understanding of the case actually thought that the parents would ever “get on their feet.” Almost immediately after we walked through the door with the infant, the social worker called to ask us if we would consider adoption.

While we were still “considering” adoption six months later, the phone rang. It was the State of Washington again, asking us if we could possibly make a trip to pick up our other great-niece, who just made her world debut at a delivery room one hundred fifty miles away. After all, the new baby had the same biological parents as the child we were already caring for, and it just made sense to place them together. We wouldn’t want to separate siblings, would we?

Of course, we wouldn’t. And we didn’t. Instead, we became parents of seven children, and resigned ourselves to eternally hearing the standard question: Are you Mormon, or Catholic? We always tell the inquirer that we’re sexy Pentecostals.

It was a phone call that promoted me from mother of one to mother of five wonderful children. Another phone call brought me my sweet curly-haired girl, and yet another gave me my big-eyed baby.

Maybe I’ll keep my phone, after all. Just until I “get on my feet.”

This piece was not only read by the author at the recent debut of Motherhood: From Egg to Zine (and everything in between), but is also featured in the current issue of Gonzo Parenting. Purchase your copy online at GonzoParentingZine.com!

People for the Ethical Treatment of Riflemen

We should have known better. Our families and friends warned us. “A mixed marriage?” they worried. “Are you sure? What about the children?”

To some extent, they were right. It’s not easy to raise children in a home with parents of mixed backgrounds. It’s a tough, bitter truth that I chose to deny when wedding Mr. Wright.

I hear that it’s tough for couples of different races, too, but that’s their story to tell, not mine.

My story is about the radically different couple who chose to wed, blend their children into a frothy marriage margarita, and become perhaps the only family in America to be card-carrying members of both PETA and the NRA.

It’s an old story, I suppose (stop me if you’ve heard this one)… Liberal vegan girl, single mother of vegetarian son, meets conservative hunter guy, single father of four little barbarian omnivorous children who cut their teeth on wild boar marrow.

Ah, sweet destiny!

In my defense, I didn’t know Mr. Wright was a hunter when I fell in love with him. I just knew he was damned cute. When he invited me to his uncle’s cabin, conveniently located at the end of the known universe, I thought he wanted to show me off to his family. Flattering, right?

Imagine my surprise when I pulled up to the Washington equivalent of the Randy Weaver compound. Good old Uncle Wright and his family raised their own food, drilled their own water, had stockpiles of arms and ammunition, and, I suspected, a bomb shelter stocked to the rafters with Auntie’s canned preserves. No neighbors within forty or so miles.

A shining example of the Second and Fourth Amendments in action.

Mr. Wright Puppy (the story behind the name comes later – I use it now to differentiate him from Uncle Wright, because it is particularly important for this sentence) and I spent the night cuddled together on the couch, small and compact, as only the newly in love can be.

In the morning, he was gone. I tried to make small talk with Auntie, who informed me that the boys had gone “over the ridge” to see if they could spot a herd of deer that Unc had been tracking. How sweet, I thought. Out communing with nature, surveying the local wildlife. An animal lover!

The rumble of a truck and a cloud of dust alerted me to the return of my beloved, and I peered out the window to drink in his beautiful, rugged… blood-smeared body as he… hauled an enormous dead deer out of the back of the rig… with a… what was that? A knife?!

As a young waitress, I served plenty of steaks, but I never actually saw the process that brought the sacrificial animal to the plate. Now, here it was, in all its sweaty, bloody glory – and my sweetheart was the Captain of Carnage! I couldn’t stand it. Something had to be done, something that would shock him out of his testosterone-induced madness…

I opened the door. Unc was opining, “This sucker’s a record kill, for sure…” I knew I had to act fast when I saw the satisfied, caveman look in my honey’s eyes. No longer the cutie of my dreams, he was beginning to resemble some Cro-Magnon nightmare…

“Oh, Puppy!” I gushed. “I’m so glad you’re back! I woke up and you were gone…” Pout. Batted eyelashes. Googly-eyed sappiness.

I am pleased to report that the impromptu nickname served its purpose. Unc and Cousin burst out laughing, Puppy blushed, and the thrill was immediately sucked from the kill. It’s hard to maintain a dignified level of machismo when you are being called “Puppy.” Unc was right about it being a record, though. It was the largest buck taken in the state in 2000. Puppy had the head mounted after processing the meat and selling the hide to a local tanner… and, as of June 30, 2004, “Buck” wears my wedding veil. Call it a small protest on my part, but many of the bragging rights are stripped away when visitors laugh at the trophy on sight.

The result of our mixed marriage is that my vegetarian son is now a certified omnivore, the two babies we are adopting are (mostly) vegetarian, my four step-kids have learned to use the term “fake-o steak-o” (introduced to them by an absentee bio-mom, who protests any aspect of my life on principle) only behind my back, and our oldest daughter is planning to pursue a career in veterinary medicine when she graduates high school this year.

She heads up anti-fur campaigns between cheeseburgers with friends…

…this brings us to the political aspect of our family dynamic (and the primary reason that Gonzo Parenting takes an apolitical position). In 1992, I was a 17-year old freshman in college and seriously bummed that I wasn’t old enough to help vote Clinton into office. Puppy was a conservative young professional and audiophile who respected only one Clinton – George.

While he’s become a little more liberal, and I’ve become a little more conservative, our children have been learning to develop their own ideas. They hear our often-conflicting points of view on things that matter, go with us to the Washington state capitol and Washington, D.C. to talk with legislators, and have perhaps worked on more political campaigns than James Carville.

Speaking of James, Puppy and I had the opportunity to hear him and his wife, Mary Matlin, speak in D.C. a couple of years ago. In regard to their vastly differing political views, they said something to the effect of: we don’t talk politics at the dinner table.

That’s great advice, but I didn’t get a chance to ask if that dinner table was vegan or omnivore…