Life with Kids

Pediatric Ambulatory EEG for Epilepsy and Seizure Disorders — Elizabeth’s Story

Ambulatory EEG in children

A lot of you know it’s been a rough year for Elizabeth, as I have posted about it before. In the past few weeks, more has happened. We did get in with the neurologist. They did take the dizzy-falling down-throwing up-migraine episodes seriously (finally!)

We’ve been having one every few weeks since November. The last one was the day of Elizabeth’s second-grade Valentine Party, but she forced herself to feel better despite being carried off the playground (our new migraine drug Maxalt helped tremendously) and attended the party. That girl is motivated by cupcakes, no doubt.

The doctor ordered a weekend-long EEG test. Elizabeth would get wired on a Friday and carry the machine around through Sunday. In the same manner that we had trouble getting appointments, we had a lot of trouble getting this scheduled. After five weeks of runaround, I finally called and said, “You have to cancel our appointment with the doctor as the test she ordered wasn’t done since you never scheduled it.” This lit a fire under them, but unfortunately, the only weekend left was during our trip to see my family and my 40th birthday.

Pediatric ambulatory EEG

So we had to cancel the trip, and I spent my 40th watching Elizabeth get attached to the electrodes. We did our best to have a good day.

One thing we discovered, however, is how ill prepared we were for this test. We looked for pictures of the machine so we could show Elizabeth how big or small it would be, and found very little, just one manufacturer picture that was obviously just an ad. We just happened to read a reminder on some other doctor’s site to wear a button-down shirt or you’d be stuck in the same clothes for three days. Gah! Why weren’t they telling us all this?

So in the end, I decided to use a Canon 7D to take photographs and HD video to document the whole experience. My blog’s Google ranking is pretty good, so hopefully when other parents start searching for information, they will find this and be able to show their children what to expect and feel less anxious.

I’m posting it both from Vimeo and YouTube as the HD can hitch a little for those of  you without great connections and video cards that can handle it. I’ll post some stills here too, and keyword them so they will be easy to find.

Pediatric Ambulatory EEG for Seizure Disorders and Epilepsy in Children from Deanna Roy on Vimeo.

This video shows in detail the procedure for a 24-hour ambulatory EEG test given over three days for Elizabeth, who had her first seizure at age six.

Elizabeth started her medicine today. We said NO to Depakote and Topamax. We didn’t feel the side effects were worth the risk for Elizabeth, whose seizures are fairly rare and not as extreme as other children’s might be. We settled on Keppra, and can only hope for the best. I’ll post more about it as we watch Elizabeth for potential behavioral changes, but I can report that it tastes AWFUL. We have the liquid, which is allegedly grape, even though it tastes more like asphalt than any fruit. She’s practicing swallowing tiny candies so that we can hopefully switch to a pill when she’s worked up to the full dose.

We can only pray she’ll do well and stay caught up in school.

Gauze wrap for EEG

Ms. Kim wraps the gauze to protect the electrode set up.

Playing at home during EEG

Elizabeth plays her favorite video game during her EEG

Machine for an ambulatory EEG

Elizabeth with her gear for her three-day home EEG

Grace in the face of adversity

My youngest daughter is Elizabeth Grace. She’s seven, likes to paint her fingernails a new color (or two) every day, refuses to eat anything that isn’t yellow, and has a still-unclassified seizure disorder due to malformations of her brain.

For the past two days, we’ve been snagged in a sea of health care red tape. Only one pediatric neurology group exists in town, so we have to play by their rules. They won’t see her until March, and that’s only if they’re willing to make an appointment, as right now our pediatrician hasn’t jumped through the proper hoops.

Last February, when Elizabeth had a grand mal, followed by a day of dizziness, inability to sit up, stand, or walk, we ended up going back to the hospital when we could have simply done outpatient testing at one-tenth of the cost. But Circus Oz came to see the patients, so if you ask Eliza, she would tell you, “IT WAS TOTALLY WORTH IT!” Missing school for a week? Not so much.

She’s back at school today despite three episodes that can’t be classified for certain without tests. Her pediatrician thinks they could be halo-vomit-migraine patterns, but they could also be seizures with traditional post-seizure side effects. Meanwhile, Elizabeth goes merrily on her way, choosing between braids or headbands, hoping her heart shirt matches her sparkly jeans, and wishing her math homework wasn’t quite so hard. She has trouble concentrating at times and deals with pains, both real and phantom, most every evening and night. She sleeps in troubled bouts, and if she gets too stressed or deals with too much static in her brain, will simply fall asleep wherever she is (sometimes even on the bottom step of the staircase if climbing them seems too much trouble.)

Specialists are hard to come by, and it seems more would-be doctors are shying away from fields that require too much bureaucracy, or ones where it can be hard to keep the clinic in the black, with all the staff required to keep the forms moving. And at times like this, when we’re unable to treat a second-grader who might embarrass herself in front of her class at any moment by falling down and throwing up, it’s frustrating to feel that the system doesn’t work even for upper middle class families with good health insurance. I can’t imagine how much harder it would be if we were poor, although I guess we’d just park ourselves at the hospital and let the bills fall where they may.

She’ll hop off the bus shortly, thrilled to have seen her friends, bummed that she has to do homework again after two weeks off, and hopefully without any trouble this day. She doesn’t always realize when she’s having illness-related problems, when one day she can add triple digits and laugh about how easy it is, and the next will lie on the floor and cry over seven-plus-eight. That’s the job of those of us around her, to keep her calm and safe and hopefully get answers when answers can be determined, and solutions when solutions can be found.

I’m not sure what we’re owed from our health care system or what we should even expect. Maybe I want too much. But to see a doctor, one who has trained and has as much information as anyone might, seems the most basic of services. So today, that is what I fight for: an appointment. And let the answers fall where they may.

The Facts of Life, Part Deux: Torture the Mother

So, a month or so ago, you read my lovely initial birds and bees conversation with my six-year-old. (Yes, SIX.)

Apparently Elizabeth has babies on the brain, as yesterday when we were stuck on Mopac, she suddenly asked, “How do you make a baby?”

Thankfully, traffic was at a dead stop, or I might have swerved off the road. This would be multi-tasking at its finest.

In a brilliant extension of my previous tactic, I answered with another question. “What do you mean?”

She would not be thwarted. “I mean, what makes a baby?”

Deep breath. “Well, inside a daddy is a part that makes the baby. And in the mother is the other part. When they come together, they make a baby start to grow in the mother’s tummy.”

“But how does he get it in there?”

Arrrghhh! My nine-year-old was mercifully silent, hunched in the back seat as though she could disappear into the cushion.

I decided to evade, not wanting to get into technical aspects. “He puts it inside the mom. And then it grows for over nine months, and then it comes out.” Genius use of ambiguous pronouns, thank you very much.

She still wanted details. “But how does he get it IN there?”

Traffic inched forward another three feet, then stopped. My mind raced. No McDonald’s nearby. No ice cream shops. What I wouldn’t give for a Chuck E. Cheese at the moment! Here, kids, tokens! Anything but The Talk!

But I was trapped.

“How does it, Mama, how does it?”

“Well, the mom and dad just decide it is time, and so they…” Oh, someone get me out of this. “They decide to make the baby.”

The cars nudged past the on ramp that was slowing us down, and we cruised a little faster.

“Almost there!” I said, lying like a toddler with a fistful of stolen cookie. We had another twenty minutes easy. “Who wants gelato when we get to Mandola’s?”

They girls chorused “Me, me!”

“Which flavor is best?” I asked.

“Chocolate!” Elizabeth shouted.

“No lemon!” Emily said.

“Nuh uh!”

“Is too!”

My work here was done.

The Facts of Life Are All About…Marriage, Apparently

My six-year-old flopped on the bed with no indication whatsoever she was about to drop a bombshell.

“So, Mama, can I have a baby before I’m married?”

I had to think for a minute. These questions are never what they seem, like the time the big horrid bad word she heard at school, that started with “s,” turned out to be “stupid.” My big anti-censorship lecture, wasted.

I decided the best tactic was to answer the question with another question.

“Do you think it’s happened already?”

“NO!” She laughed at me.

“Then clarify, please.”

“What if you have a baby in your tummy, but you aren’t married?”

I’m about to wax poetic on how one does not need to marry someone just because he fathered a child, when she went on. “I mean, does it get stuck in there until you’re married? Can it not come out?”

I feigned a coughing fit so I could compose myself. AND figure out how to answer.

“Well,” I began, with no idea where I was going to take it. “No. The baby will come out whether you get married or not.”

She looked puzzled at this. “But how?”

“Well there are two ways a baby can come out–”

“No!” Exasperation. “Does it have to stay in there longer? How does it stay in there?” 

“Are you asking me how a baby gets INTO the mother?” Please, please say no. I can’t manage this in first grade terminology. I suddenly remembered the infamous line from Kindergarten Cop, “Boys have a penis, and a girls have a vagina!”

“NO!” She gripped the blankets on my bed, frustrated.

“I know this is a real mystery,” I said. “It’s hard to understand.”

“So I can have a baby before I’m married?” Back to square one.

“Yes,” I said. “It might be harder, being a single mom, but people do it all the time.” I gave examples of friends whose moms were raising them, dads gone or moved away.

“But the dad was there when the baby came out.” This is still a sticking point.

“The dad really only has to be there when it goes in,” I said. Although actually, with sperm banks, even that might be optional.

“The dad puts the baby in?” She seems shocked, and I can see her mental image of the dad somehow inserting an infant.

Enough. Bring on the mom cop out. “Time for bed,” I said. “We can talk about this some more tomorrow.”

I herded her to the bedroom. Hopefully tomorrow she’d have easier questions. Like the cost effectiveness of the bank bailout and the economic flow of the stimulus package. Or tips on a successful exit strategy in Iraq.

Quite possibly, it won’t come up again until her wedding day. Or when she tells me I’m going to be a grandma. Whichever comes first.

A Picture of My Morning

8:30 a.m. I wake to a breath against my cheek. I open my eyes to filtered sunlight on a round face, still faintly babyish, soft and a bit silly. Elizabeth.

She speaks. “Mama, you’re up!”

She rolls on top of me, putting her small hands on either side of my jaw. “I’m hungry!”

Her smile reveals the gap in her mouth. Her first tooth fell out yesterday. A pink tongue finds the hole. She isn’t used to the sensation, an empty space, the spongy gum.

She wriggles impatiently. “Get up!”

“You’re on me!” I say.

She slides off easily in her slippery nightgown. “Can we have cake?” Last night we baked a lemon one, creamy yellow with frosting like sunshine.

“Does that sound like a healthy start to your day?”

“Mama! That’s a commercial!”

She gets yogurt instead, with a promise of cake later. Her sister stirs in her room. Soon the television punctures the quiet, a cacophony of cartoon shouts and sound effects clattering through the room.

Emily arrives, crying. “What happened?” I ask.

“I scraped my arm on the bed.”

I examine the wound, a long pink mark with a bit of skin peeling back. “It will only hurt a minute,” I assure her, pulling her into a hug. She’s nine now, and I only get to hold her this close when she’s hurt or sick.

Within minutes, she’s eating cheerios. Elizabeth has already tired of cartoons and sits on the floor to her room, reassembling her Betty Spaghetti doll. She starts humming, then when she gets to the part of the song she knows, bursts out with, “Tomorrow, tomorrow, I love ya, tomorrow!” She’s mad about Annie right now. We’ve had to limit how many times we will play the song in the car.

The day off is a relief to them after two weeks of school, early mornings, strains to make the bus, homework and due dates and pressure. We all stretch out in our free morning, lounging in pajamas, not doing our hair, wandering about the house to look for something to do.

I know these days are fleeting. Already they shift into the young women they will become. They cry less, fight more, and don’t tell me everything.

But today is our day, they are still little, and I capture this passing ordinary moment of their childhood, a picture of our life together while they are still at home, I am still their daily influence, and they are mine.

Now it’s time to eat cake.

Using the s-bomb

Over on Verla Kay’s Children’s Literature boards, we had an intriguing discussion about the use of swear words in young adult books. Published writers and author hopefuls all weighed in on when, if, and how much it was appropriate to curse in books targeted for teens.

As a former teacher of both middle and high school, I know fervent language is a rite of passage among even the most well behaved kids. While I didn’t allow it in my classroom, we had a rule in the darkroom. While in the pitch black, holding sensitive but squirrelly rolls of film in our hands, trying to load the tight coils on a wheel for development, we agreed that “if the film hits the floor, any words you say cannot and will not be held against you.”

Teacher included.

I’ve been wondering myself when and how to let the kids get exposed to language. It crops up unexpectedly, even in movies targeted for small children. I remember well the shocking moment in Stuart Little when an alley cat uttered a four-letter word. Kids pick up on new sounds and often roll them around their mouths, or tuck an interesting sounding word away to repeat at a bad moment.

So we sat at Jason’s Deli, and I asked them if they knew any bad words. Emily insisted she didn’t, although in 4th grade, I felt certain she had been exposed.

“Really?” I pressed her. “Nothing? It doesn’t matter to me. I’ve heard everything and you won’t be in trouble.”

Still, she shook her head.

“I have!” piped up Elizabeth, newly minted in 1st grade. This did not surprise me at all.

“Well, out with it!” I said. “I want to hear which one!”

She dropped her eyes to her mac and cheese. “No.”

“Hmmm,” I said. “I’d really like to hear it.”

She still said no.

“Well, what does it start with?”

Elizabeth thought for a moment, straining to recall her spelling, which was still new. “S,” she said finally.

“Well, is it ‘s’ like snake or ‘sh’ like share?”

She seemed confused by this.

“Is the next letter ‘u’?” I asked.

She didn’t want to answer anything. So I pondered s-bombs for a bit, then suddenly realized the word. “Elizabeth, is the word stupid?”

She snapped her head up. “Don’t say that!” she hissed.

I honestly tried not to laugh. “Stupid is not a bad word!”

When she continued to scowl, I persisted. “You shouldn’t call someone stupid, and that is not nice. But stupid is just a word to describe something you find to be less than smart. Like a stupid rule.” (As in a rule about not using stupid, I thought, but didn’t say. It’s one thing to keep children playing nice, another to remove language to accomplish that. Makes me think of Newspeak.)

She still flinched every time I used the word. We finished dinner, me trying not to laugh and wondering how to get across the difference between actual swearing and mean words. I guess I have a bit of time left before the true four-letter words start to fly.

Maybe I should get them some good books.

Memories of the ol’ Four-Eyes

web-emily-glasses.jpgI didn’t really want to take Emily to the optometrist.

Maybe I was in denial, but she seemed fine to me. Her dad insisted she wasn’t seeing well, though, and so I took her last week.

She wasn’t happy about it, and neither was I.

She breezed through the glaucoma air-puffs much better than I do — it always takes ten tries and then they just give up. She seemed uncertain on the blind spot tests, but managed well for a nine-year-old who was obediently doing what she was told, even if she didn’t want to.

The exam itself was harder, as she hesitated on every choice between 1 and 2, better or worse. I sat quietly, not speaking for her or urging her to decide. This was her moment.

I was also nine years old when I got my glasses. My dad had come to school one day and noticed me walking up to the board to copy problems. I remember picking up my first pair from TSO and being astonished — birds sit on telephone wires! Signs have more than just the big pictures — they say stuff!

My happy view of the world crashed quickly. On the bus the next morning, I no more stepped into the aisle when someone shouted, “Four eyes!”

Being a shy and emotional girl, I immediately sat down and started crying. The day would get worse, boys stealing the glasses from me, the sweaty slide of plastic frames down my nose at recess, the pinch behind my ears. None of this seemed worth not having to walk to the board anymore. I vowed to lose or break the crummy things.

But we were poor, and glasses were expensive, and I feared the wrath of my parents if nothing else. So I learned, for the next five years until I got contacts, to hunker down and endure. I hated the way I looked. I clearly recall the day in seventh grade when I read a book that said, “No one should wear long hair and glasses!” I grabbed handfuls of my waist-length hair and yanked hard, as if I could tear it out. No wonder boys didn’t like me! I felt endless jealousy of glasses-free girls. So I read and studied and kept to myself.

Sitting in an optometrist’s office as the doctor rattled off the news was harrowing for me. Emily got her pale blue frames and we immediately bought her a super cute glasses case to store them — turns out she only needs them for distances and will actually see better without them up close and on the computer.

I tried to breathe easier. Even though I know more children wear glasses now, and teasing is something we all have to learn to manage, I still want to protect her as long as I can. All of us parents want our children’s lives to be better than our own, and this was one thing I couldn’t stop from happening — her genes being half mine. But you can bet I’ll be watching her closely for any signs of upset two weeks from now when school starts. And I won’t ignore any withdrawal she might go through. We remind her how cute she looks, how smart and fun — and it’s true. But I worry about her, and I can’t help it.

Locks of Love

before-web.jpgAbout this time three years ago, a three-year-old Elizabeth pushed a chair over to the craft counter, tugged her sister’s safety scissors out of the box, and lopped off the ponytail on top of her head, sheering off a serious section of hair to the scalp.

We called her “Spike.”

Since then, she’s mostly grown her hair out, and boy did it grow. This morning when we took her picture, she could almost sit on her blonde “princess hair.”

during-web.jpgBut today she decided to cut it all off — letting the hairdresser do it this time — and give it to Locks of Love, who provide natural hair wigs to children with illnesses.

She was very upbeat as she sat in the chair and showed Suzie from Kid Clips how much to cut, angling her tiny hand near her chin. I was worried she would cry as the hair came off, but she was laughing the whole time, amazed at the instant change in how she looked.

after-web.jpgThe girls have two friends at their elementary school who use Locks of Love hairpieces. I’m amazed that when I mention the organization, everyone seems to know about it. It’s a great way for children to understand the challenges their peers face, and instead of feeling strange about seeing other kids without hair, this gives them a way to relate.

Happy Graduation!

And happy greetings not just to our high school and college grads, but all our Pre-schoolers and Kinders who get to don the gown and take a step up to the next part of their little lives.

Elizabeth’s graduation song is now on YouTube.

Veggie Wars: A New Beginning

web-eliza-happy.jpgSo, when we last visited the front line of the veggie wars, Mom was losing, big time. We’d discovered Elizabeth was hiding her veggies under a side table (and not thinking to go back and throw them out later.)

I didn’t blog about the veggie wars for a while because I was, well, despondent. Failing.

But I regrouped, and with some luck in the form of Luby’s veggie plates, we went through vegetable after vegetable to find something, anything, this child would eat.

Our next breakthrough was sweet potatoes, a favorite of Elizabeth’s when she was little, but somewhere around age 3, she lost her way. Around then, actually, we lost everything that wasn’t yellow–mac and cheese, bananas, apple sauce, and chicken nuggets were our only friends.

The trick to the sweet potatoes was to let her make them. We boiled the fresh sweet potatoes, peeled them, mashed them up, then added a little bit of butter and just a touch of brown sugar (literally a teaspoon per potato), and topped them with just a few marshmallows. Bake it for about 15 minutes, and yep, she’d eat it. With relish.

We’ve added french fries and mashed potatoes to our veggies as well, even though fries aren’t my favorite. She’ll also eat some whole kernel corn. We no longer offer carrots after discovering the stash of dried ones. Too easy to hide.

Elizabeth is six now and I never thought we’d be fighting this hard, this long. Emily is an excellent eater, adding a new food to her diet every few weeks. But we keep plugging at it, enduring the dinner time tears when necessary, breaking out the dessert bribes without guilt, and wishing Deceptively Delicious was just a tad more deceptive, as it hasn’t worked once on this little princess who may not be able to feel a pea under a mattress, but can spot a veggie at 20 paces.

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