Epilepsy

To the Good People on the Arbor Trails Running Path

I didn’t mean to make you uncomfortable during your exercise regimen, really.

See, I got up today and things were so totally normal. 6:20 alarm. Made lunches for my two girls. Set out outfits. Got Child 2 to show choir rehearsal. Got Child 1 to the bus. Tracked down missing item for talent show and took it up to school.

I mean, all was well, right? I arrived at the running path and set off like normal.

Except that at some point, 2 miles in, everything went wrong. One minute I’m zipping along, darting around muddy spots, and the next minute I’m bent over, sobbing my fool head off.

People of the Trail, I know this was disconcerting. I beelined for a bench, a little off to one side. I meant to sit ON the bench, really, but missed and ended up sitting in the mud with my head in my arms.

I’m sorry that it might have caused you concern.

See, today is a little harder than I’m letting on. Today Child 2 gets yanked from school, taken to the hospital, and wired up again. She is taking this too well, with a little too much shrug in her shoulders, and I hate that her sunny little life has gone so gray this year. Anti-seizure meds not working? Shrug. Failing school? Shrug. Hates her practical hair cut for the wires? Shrug. Missing the yearbook staff party, the culmination of a year’s work? Shrug.

eliza-bucketMaybe I was crying for her, for the kid who didn’t really deserve all this disaster, who got a “bucket” from her fifth-grade class yesterday that was full of “You’re nice and kind to EVERYONE” and “Great smile, britens my day.”

But among the people trying to keep their pace up and avoid the crazy crying woman, there was that man, the one I’ve seen on the trail every day, and worried over actually. Seventy, easy, wearing a long-sleeved shirt and baggy khakis with a funny old-timey cap pulled low over his dark eyes. His sun-worn brown face always shifts into a big bright smile when we pass each other, his shabby Hush Puppy loafers shuffling in front of the other. “Buenos dias,” he always says with a nod. “Good morning,” I answer.

web-rose-on-benchHe thinks I didn’t know who he was when he walked up, but I knew his shoes, the pants, the shuffled step. I waited until he was gone and pulled myself together. He’d left a rose on the wet bench. When I looked either way on the trail, I didn’t see him.

I do what we do in these moments, pulled myself up and brushed dirt and wet mulch from my legs. I recognized the rose from the bushes in front of the bank, plucked, no doubt, but I had a feeling where this guy comes from, forgiveness is stored in buckets by the door.

Maybe you don’t believe in guardian angels, but I’m pretty sure I do now. Whether they are celestial beings or real people, doesn’t matter, but I know they are out there. And those of us going through whatever we are forced to endure, sometimes it just takes looking to see them, and sometimes it just takes having faith that they are there.

When one purple scarf makes a difference to a girl with epilepsy

Elizabeth went to the neurologist office this week so we could sort out the new symptoms of her medication (Lamictal) and find some strategies to manage the changes in her life.

While we were there, the Nurse Practicioner came in with several hand-made scarves in varying shades of purple, the color chosen for epilepsy awareness. “Pick one,” she said.

Elizabeth was shy about it, but eventually selected a simple solid purple scarf with an intricate weave. On it was a round sticker that read “The Purple Stitch Project.”

The meeting went on, about her sudden weight loss (10% of her body weight in three months), her sudden downturn in school (we sign failing papers almost daily), and her overall feeling of tiredness and well, just blues.

We’re not giving up on the medicine, as it’s the last one they’ll give us. We’ve been through others, and while sometimes they work for a while, the seizures return, often more frightening than the last. Elizabeth, now 10, has been medicated for three years. We’ve been through seizures in the swimming pool, at the top of playscapes, in restaurants, at parks, many at school, including one during a whole-school assembly.

Life isn’t easy.

But she held on to this scarf as we left, puzzling over the stitches. She had joined a knitting club last year and wondered how hard this particular pattern was to follow. I asked her if she wanted to make scarves for the Purple Stitch Project herself, and then she had the brainstorm that maybe the whole club would.

I wrote the mom who runs the club, who thought this was a fantastic idea–the girls making scarves as community service. They’re going to stock up on purple yarn when they start the club up again in the spring. The one scarf given to Elizabeth will keep on giving–both in providing gifts to other children with epilepsy, but also making sure the thing that makes her different from her friends is something they can talk about, to bring them together rather than set her apart.

I don’t know everything that goes on inside Elizabeth’s mind, the changes in weight and self-image, going from from manic energy to lethargy, from seeing the silver lining everywhere to feeling surrounded by doom, to doing well in school to having trouble concentrating on anything.

We do the best we can.

If you knit, we encourage you to join in. Make something purple and send it in to the Purple Stitch Project. The child who gets it just might be someone you know, someone like Elizabeth, who will take your one scarf and turn it into something much, much more.

Elizabeth goes global

Elizabeth has been unique since well before she was born, surviving the loss of her twin when my water broke at only 10 weeks gestation during a flight between Switzerland and the US (the longest twelve hours of my life.)

Sometimes when life gets really difficult, when she’s having a “Bad Brain Day,” as we call it, to externalize her inability to think clearly or control her emotions, I hug her and tell her how thrilled we are that she’s here. We didn’t think we’d get any days with her at all. So even hard ones, where homework seems impossible, or, like a few weeks ago, when she had a seizure and threw up before the entire school at an assembly, are still good days. Any day with her in it is a good day.

We learned a few days ago that the manufacturer of the glue that holds on the electrodes during an EEG test wanted to use Elizabeth’s video as an educational tool for other parents. They had discovered, as we had, that there wasn’t a lot of footage of this, clear explanations about what happens when your child has to be wired for days at a time to monitor brain activity.

I can’t tell you how glad I am to have had the equipment I had that day to shoot the high definition video and stills to document our experience so that other parents would get a chance to calm their fears and those of their children. (And that I could keep from shaking too much as I hand-held the camera while she went through this.)

The video was reworked with an amazing song by Jonny Boston licensed through Triple Scoop Music. The company will be using it in several countries, and it is already up on their web site. I updated Elizabeth’s story, so others would have an idea of how she is doing. I can’t imagine living my life like she does–never knowing when or where or how a seizure will strike, what will be happening when she comes out of it, or who might have seen. She’s eight now. It’s a lot to manage. But she does great.

Here’s the newly spit-shined video. We’re going to put up another one soon–something FUN. She saw lots of kids on Amazon were upset that they couldn’t get their spinning plate juggling kits to spin, so we recorded her showing them how to do it properly (the kit took some modifications–all her ideas.) That’s my girl.

A Conversation about Heaven

About an hour ago, Elizabeth and I said our nightly prayer, which includes asking for God’s blessing on our friends and family members by name.

This time she said, “Don’t forget Irma.” Our good friends lost their two-day-old newborn yesterday.

“And God bless Irma,” I said.

“And her baby,” she added.

“And her baby.”

She pulled her pink kitty pillow closer. “Is Irma’s baby in heaven yet?”

I nodded. “He died last night, about the time you went to bed.”

“I know that,” she said. “But is he in heaven yet?”

“He is,” I answered. “How long do you think it takes?”

“About a week.”

I tucked her two favorite blankets around her. “So, where do you go for that week?”

She thought for a moment. “The waiting room. Like at the doctor.”

“I see.”

“Do I have to go back to the doctor?”

“Yes.” While I was at the hospital yesterday, Elizabeth had another seizure at school, this one much worse, adding four minutes of unresponsiveness to the old pattern of dizziness and inability to walk. She’d always been lucid through them before.

“Oh brother.” She sighed and closed her eyes.

She’s tired now, earlier than usual. We had to increase her medicines yet again and now must monitor her sleeping patterns in case the bigger doses make her too sluggish. But still, we have to increase the meds once more next week. Her body may no longer be responding to it.

I have known helplessness as long as I’ve known motherhood, my own first baby dying when I was 20 weeks pregnant. Then losing Elizabeth’s twin, a trauma that may have caused her brain damage.

How can we feel so desperate to protect our babies and yet be able to do so little?

She opened her eyes one more time. “It really doesn’t take a week?”

“Nope. Happens right away.”

“So Irma’s baby is already there?”

“Yep.”

“Can he see us?”

“Maybe.”

“Can I tell him to take care of Finn?” Elizabeth’s fish has been sick for several weeks. “Fish do go to heaven, right?”

“I think so.”

“Do they have to wait a week?”

“Nope. Not fish either.”

She yawned and settled back into her pillow. “Good. I wouldn’t want to wait that long.”

Neither would I. And yet, we wait our lifetimes. Hopefully long ones. And hopefully ones where joy comes more often than loss, and fear is pushed away by faith.

Elizabeth’s Not-So Merry Go Round

And the health care system goes round and round. My 8-year-old daughter Elizabeth and I feel like we’re getting tossed like so much Caesar.

When I was in second grade, our school yard had one of those old-fashioned merry-go-rounds, a metal circle with handle bars. You ran alongside it, and when you hit the perfect speed, you’d jump up and hang on.

Most playgrounds don’t have these anymore. That year, I was idly sitting on it during recess, reading a book. The football team came out to practice on the field adjacent to the playground. They decided I looked like I needed a little fun, so they began spinning the merry-go-round. Naturally, with six athletic teenage boys putting their muscle into it, I spun very fast. My book went flying off the bumpy metal wheel as I hung on to the handle, bracing my feet against the opposite bars in hopes of being able to ride it out.

But I couldn’t. Even though the boys stopped running and backed away, I couldn’t hold tight enough and flew off, landing in the gravel.

It could have been worse. Nothing was broken. I skinned one side of my leg and arm, a mass of blood, dirt, and gravel. The boys were terribly sorry and tried to hand me my book. I got tons of attention I neither needed or wanted. Shortly after, this merry-go-round was removed. I was blamed, and this ushered in a rather unhappy period of that year.

The way our world has spun since Elizabeth had to go on full-time anti-seizure mediation has been just as sickening, and I definitely feel the fear of a terrible crunch at the end. In this week’s whirl, we got our three-month supply of medicine only to open the box and discover the generic instead of the brand name.

Our neurologist had absolutely insisted we not do this particular medicine in generic, as we had done for the first month. The FDA only requires a generic dosage be within 80-125% of the correct amount of the brand. For a tiny girl like Elizabeth, getting 80% of the lowest dosage that she’s already on, since she is so small, means she may get seizures. Which means we’ll think it’s not working even if it might be. And of course, that she might have something happen to her, the always-fear when seizures are present for anyone.

To add to the fun, the suspension that the generic drug sits in as a liquid (she’s too small for any pill dosage) is seriously inferior to the brand name, making it appear like sour milk. We are quite certain that the cloudy liquid and the thick white chunks are not the same dosage, so we had to be super-vigilant about shaking it very very well. And even then, it seems like the bottom of the bottle is not the same color as the top.

We confirmed all this with our pediatrician yesterday. I ran to our local Randall’s, which had filled our interim prescription correctly with the brand name, and they delivered the bad news: since we had three months of generic from the mail order, the insurance wouldn’t cover it. We’d have to pay $186 a month for three months to get the brand name.

Upon calling the neurologist, we learned she had forgotten to uncheck the generic equivalency box. Her mistake, they were sorry. $600 sorry?

In more urgent news, all this delay meant we were OUT of medicine. Tick tock. This is an uncommon drug as a liquid and not stocked in most pharmacies.

Let me tell you, if you are ever in any sort of medical bind, I hope you get a pharmacist assistant like Cecilla at our local Randall’s, who, despite the fact the error was the doctor’s, and despite the fact that a mail order place got us the wrong medicine and it wasn’t anything to do with her, spent hours on the phone, negotiating with the insurance, putting in a medical emergency override, and getting us the rare brand name drug for $25, all within 16 hours.

I know most of us are at the mercy of doctors, insurance companies, and drug policies. But sometimes, people in the system do stand up for you. And sometimes, it’s not even the people you think it will be.

Elizabeth has gone 8 weeks without a seizure. We hope that means the drug, our second one to try, is working. She’s been to Magic Camp, finished her Pokemon game, and kept her nose in Gail Carson Levine books all summer. She just finished second grade. Our merry-go-round has been about as traumatic as that ride I took at her age, and the consequences have been, like mine, minor compared to what they could be. We see parents of children with heartbreaking problems and count our blessings. Certainly right up there on that list is Cecilla, who helped make sure that as the world started spinning out of our control, that we got the care we needed.

On Cheez Whiz and Seizures

I’ve always been told that the more adjectives you pile on, the further something deviates from what you thought it was.

Take Cheez Whiz. It is not cheese. If it were cheese, the package would just say “cheese.” At most, “cheddar cheese.” Or “American cheese.”

But no. Cheez Whiz, in addition to its aberrant spelling, also packs on the modifiers. “Processed cheese food product.”  There’s no hiding the fact that it’s made of chemicals in no way resembling the version solidified from the bodily fluids of a cow.

I’ve found, in this year, two months, and twelve days since Elizabeth’s first seizure, that I’ve been guilty of modifiers. “Seizure disorder.” “Seizure-like event.”

Tiptoeing, as it were, around the thing I’d rather it not be. Seizures. Epilepsy. A life-long battle. No cure, in our case. Hard to treat.

The meds aren’t working. Elizabeth had another big one today. She was hysterical, the Keppra doing it’s job of scrambling her emotions, making her react strongly and violently to everyday events, so a big one like this sent her over the edge. Sobbing, gulping, having trouble breathing because she’s BEEN TAKING THE MEDICINE EVEN THOUGH IT’S YUCKY AND WHY IS THIS HAPPENING ANYWAY?”

We had tried easing the misery of the foul-tasting liquid. First with the extend-tabs, which were too big, and she choked. Then we tried to get the crushable pills, but the penalty for the doctor writing the Rx “dispense as written” made them $461. How are people supposed to do that? So we’ve continued the liquid, Elizabeth cheerful about it, finding ways to squirt it in the pocket of her cheek to minimize the taste.

But tonight she couldn’t walk, couldn’t get off the bed, too dizzy to move, completely distraught until she started throwing up despite the anti-nausea meds. All the side effects and none of the benefits.

“Why didn’t it work?” she asked between big heaving gulps of air.

I couldn’t tell her. I had no answers.

I can pile on the modifiers, try to change the way it sounds, put a spin on it. But that won’t change anything. A seven-year-old is afraid. And we are too.

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.

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