a bad day for benzos

When Calvin was three, we found ourselves in the pediatric intensive care unit—again. We'd been there more than a handful of times the previous year for clusters of seizures which led to prolonged fits, including one scary grand mal lasting forty-five minutes. Calvin's anticonvulsant medicine at the time, Depakote, was the third one to fail after Trileptal and Keppra. I had questioned his neurologist, who I'll refer to here as Dr. Rx, about his choice of Depakote for a child who, because of his age, developmental delay and type of seizures, was deemed high risk of developing liver failure from use of the drug. Dr. Rx downplayed the threat, prescribing it nonetheless.

When Depakote failed to thwart another dangerous spate of seizures, Dr. Rx decided to switch medications again. This time he chose to put Calvin on Lamictal, a drug requiring eight weeks of titration to avoid two dangerous, sometimes lethal rashes. The plan was to keep Calvin on Depakote while slowly increasing the Lamictal to a therapeutic level, at which point the Depakote would be eliminated. However, Calvin's blood work came back showing dangerously elevated liver functions. This discovery required the immediate discontinuation of the Depakote, thereby necessitating a second drug, Zonegran, to be put in place while the Lamictal was being titrated.

Why Dr. Rx didn't simply choose to switch to Zonegran instead of Lamictal, I don't know. What I do know is that I was relatively new to the game and hadn't the time or presence of mind to think it all through and press him on his decision. I was frightened for my seizing child, and perhaps too trusting of doctors in general. What made matters worse is that Dr. Rx also prescribed clonazepam, aka the notorious benzodiazepine Klonopin, to be used as a "bridge" drug, meant to fill the gap until the Lamictal got up to speed. But wasn't that why he prescribed Zonegran? I wish I'd pressed him harder on that issue, too. I wish I'd known what benzos were, how they worked, the risks they posed. Most regrettably, perhaps more so than any other decision made for our boy, Calvin traded one drug for three; most unfortunately one of those was a benzodiazepine.

Fast forward two years to the summer after Calvin began the ketogenic diet. The diet hadn't put a dent in his seizures, had caused him to gain a lot of weight, and increased the blood levels of his drugs, exacerbating their side effects. Still, we were loathe to give up the diet, though in hindsight we should have done so within months of initiating it when it was clear it wasn't working. Thinking clonazepam might be the culprit of some of Calvin's stupor, lethargy and ataxia, his new neurologist, Dr. T, thought it might be wise to wean him off of it. Over the course of just six weeks—a protocol I learned later is far too swift, particularly considering Calvin had been taking it for over a year—we began decreasing the drug. Calvin's seizures immediately doubled, hitting him every day or two. He stopped eating everything but yogurt, disrupting the delicate balance of the diet. He forgot how to swallow his medicines, holding them in his mouth for up to ninety minutes at a time. Something had to give.

Four drugs were recommended to us as options. Two were new ones on the market, which gave me pause not knowing their long-term side effects. A third was known for causing fatal aplastic anemia. The fourth was a benzodiazepine derivative called clobazam, aka Onfi. Dr. T told us, as a derivative, Onfi is thought to be less of a muscle relaxant and less addictive than other benzos, and that it might even assist Calvin off of his Klonopin. With some trepidation, we took the bait.

The following month Calvin had no seizures. Then, in subsequent months they began appearing again. First one, then two, then three and so on. Each time we increased his dose. This pattern continued for months on end as we were simultaneously weaning him from the ketogenic diet, the Zonegran, then finally the Lamictal. Eventually, his Onfi dose reached 35 milligrams per day, an adult dose frighteningly high for a child weighing less than forty pounds, and an amount well over what we knew to be therapeutic. Calvin remained on this dose for four years while we added two other drugs, Banzel, then Keppra, again. The drug cocktail worked well one summer; Calvin went 78 days without any seizures, but what suffered was his behavior, which had become intolerable. He shrieked much of the day, particularly when in the car and when being fed. His sleep was erratic; insomnia a major problem. He woke up crying every morning. He couldn't sit still. At one point he became anorexic, losing ten percent of his body weight in a single month. I was reduced to tears most every day. We were all miserable.

Finally, Michael and I decided we needed to focus less on seizure control and more on quality of life since ours was rapidly deteriorating. We chose to begin eliminating drugs. The first to go was Banzel, which was relatively easy. Having done some in-depth research, I discovered cannabis as therapy for seizures and began making a homemade THCA oil and giving it to Calvin. I read some more about the trouble with benzodiazepines, their tendency to cause paradoxical reactions in kids such as hyperactivity, insomnia, agitation, restlessness. I stumbled upon the Ashton Manual, the bible for benzodiazepine withdrawal, and we began weaning the medication on a schedule we developed, wisely, without advice from any neurologist.

I'm happy to report, today was a bad day for benzos; tonight, about an hour ago, Calvin took his last dose! WOOO HOOOO!

What I hoped might be a one- to two-year withdrawal became a wean just shy of four years. But with the help of the cannabis oil, we've seen Calvin's daytime grand mals disappear. On most nights now, our boy is sleeping incredibly well. Benzodiazepine withdrawal effects can be lingering—some of them perhaps permanent—so he remains restless, though is legions better than before. His behavior is less and less erratic. He can walk on his own in the absence of obstacles and where the terrain is level. He is less stubborn, less manic, not nearly as loud, and has more stamina. He is having more seizures each month, though—one or two extra grand mals at night and a smattering of daytime partial complex ones—but as the benzo fog recedes, and as we move away from his last dose I expect to see fewer seizures.

Note: I have heard from some parents that benzos are the only drugs that seem to work for children who have the most serious cases of epilepsy. But if you can avoid them, by all means, do.

With benzos behind us, hoping we will see Calvin more often looking like this.

keen ideas

For three days in a row Calvin slept in my lap downstairs on the plush couch, waking only for a few moments at a time before laying his head down again. No fever. No cough. No runny nose. Just refusing food and not drinking enough. The few times he walked, he was weak and wobbly, and was spacey and pale at times as he sat idle in the middle of the floor. If it were not for the fact that he began showing signs of some kind of ailment prior to the seizures he had on his birthday morn, I'd think perhaps the culprit were my most recent batch of THCA cannabis oil which is slightly hazier than usual having used a different kind of oil.

Today Calvin seems much better, and although his balance is still off, he went to school and ate most of the food I packed for him, which is no small amount (my boy seems to have a fast metabolism.)

Lately, I've been more keen on the idea of taking care of my own body a bit better than I have these last several years. A couple of loved one's radical health issues, which landed them each in the hospital for surgery through no fault of their own, got me thinking—Michael and Calvin would be totally fucked if anything happened to me. With that angst-causing thought in mind, I'm keen on sleeping more, keen on drinking less alcohol, walking more, eating more real foods like fruit and fewer ones like chips. I'm keen on consuming more vegetarian meals if I can convince the chef of the house to let up a little on those winter comfort foods—namely pork and lamb—which he likes to cook, and I like to eat so much.

I used to regularly feel ten or fifteen years younger than my age. These days nearly all of my fifty-four years are palpable to me. Perhaps this feeling is partly due to the long winter, to being trapped inside and unable to move my body as much as I'd like to outdoors, what with all the ice and snow (I don't like exercising in groups or swimming indoors.) Perhaps it's these extra handful of pounds hugging my body and not letting go. No doubt it's cumulative sleep deprivation and the lack of sunshine we've had this winter in an otherwise decently sunny town. Chances are the stress of raising Calvin causes more gray hair to grow.

Thankfully, spring is on its way. And in less than two weeks Calvin will take his very last dose of benzodiazepine after ingesting them since he was three—nearly eleven years. Just that will liberate me! Hopefully he'll come off the bus in a few minutes with a smile on his face and walking steady and tall. With luck, as he grows (he is a foot shorter than I and nearly half my weight) I will become stronger still, something I'm very keen to do.

Photo by Michael Kolster

onto something: cannabis and gaba

Seven minutes had passed by the time we saw the world flood back into our son’s eyes, seven miserable minutes until we were sure his seizure was done. Even after all these years it never gets easier to see him get sucked into an epileptic vortex.

At bedtime, having sensed the looming fit, I’d given Calvin two times his normal dose of homemade THCA cannabis oil, which seemed to postpone the seizure’s onset until after midnight, though didn’t halt its approach. When the convulsing finally stopped, I gave him another full dose, squirting tiny bits into his mouth between swallows. Thankfully, the oil seemed to prevent a subsequent attack.

Every time Calvin suffers more than one seizure in a single night I try using a new strategy, hoping to solve the puzzle, escape the conundrum, thwart the assault. Several daily doses of THCA oil appear to work well to curb his daytime seizures to a great extent—he has had only one daytime grand mal in 451 days. Sadly, though, this month has been a bad one for our boy, having had seven grand mals at night and a cluster of about a dozen partials, making it his worst month, seizure wise, in years.

Despite this setback (I should emphasize here my suspicion that it’s due, at least in great part, to a difficult benzodiazepine withdrawal) my husband and I remain hopeful. Since augmenting Calvin's cannabis oil regimen with various supplements in recent months—zinc to suppress the excitatory neurotransmitter glutamate and improve his body’s production of GABA, the body’s chief inhibitory neurotransmitter that Calvin’s body is craving due to the difficult and protracted benzodiazepine withdrawal, vitamin D to aid calcium absorption to help remedy Calvin’s osteopenia (which was perhaps caused by years on a failed ketogenic diet and/or side effects from some of his antiepileptic drugs), a daily probiotic to improve digestion, immune function and GABA production, and P5P (the active form of vitamin B6) to aid in the production of GABA as well—we’ve seen him make strides. Besides the disappearance of daytime grand mal seizures, we’ve seen Calvin have far fewer and less intense viruses and infections, seen him sleep better and lose much of his stubborn refusal, seen his stamina and behavior vastly improve, seen him drool less, seen his persistent chin rash disappear and, perhaps best of all, in the absence of spoken language he is now able to employ various signs, albeit some emergent, for the words hug, all done, more and eat—thanks to the hard work of his aide Mary.

In other words, Calvin is coming back to life again after some years as a lethargic zombie followed by many years as a raving lunatic, both phases I've no doubt resulted from the mind-warping pharmaceutical antiepileptic drugs, the main band-aids used for treating epilepsy.

It is too early to know, what with so little research, what cannabis might be doing to my son’s brain. But lets be honest, the disclaimers drug makers put on nearly every antiepileptic drug admit to as much—that they don't know exactly how they work. What I can say is this: Calvin usually has four or five grand mal seizures a month and, sometimes, a handful of partials—this in the face of an active withdrawal, having reduced his addictive benzodiazepine, clobazam, by nearly ninety percent. He is taking only one other antiepileptic pharmaceutical drug, Keppra. There was a time when Calvin was on the ketogenic diet plus very high doses of three or four pharmaceutical drugs at once, yet he was still enduring a dozen or more seizures most months, not to mention suffering the drugs' deleterious effects on his behavior, stamina, focus and development.

We're not out of the woods yet, but I’d say we might be onto something with this cannabis-GABA thingy; at least I can always hope.

Photo by Michael Kolster

the trouble with hope

I have found that the trouble with hope—the stuff that sometimes feels like the only refuge I have—is that it can give me false cause to keep my nine-year-old son on various failing drugs for far too long thinking that they might, at some point, at some perfect dose, begin to work. Hope has prompted me to endure and impose the rigors of dietary therapies for years, tweaking them and honing them and fiddling with them, hoping they will at some point stop his seizures, even when the studies tell me that, if they do work, I'll see results within weeks if not days. The doctors hold the same hope, for they see it in my eyes, and so they give me the authority, encouraging me to stay the course, even when it might appear plain that the shit isn't working. This is the power of a mother's hope; this is the trouble with hope, and I know it, and it pains me.

And so, with great discomfort, I peel myself out of the sheath that has become my codependence—fearful as I am to let go—this false yet alluring promise of hope, and I bring Calvin down and eventually off, and I hold my breath and I see the seizures come and go and I wonder if I've done right and I feel the worry and I study other options and I consider the lesser of those evils with, of course, a measure skepticism and more than a decent dose of motherly hope.

some good news

Finally, we got some good news about Calvin’s health: the nephrocalcification in his kidneys has improved, almost to the point of looking normal to the radiologist and his nephrologist, who both read yesterday’s sonogram. It’s unclear why he had what they sometimes call sludge or brightness in his kidneys—little crystals of calcium that can form into stones. Perhaps it was due to the years on the ketogenic diet, perhaps it was the lack of citrus in his diet, maybe he wasn't drinking enough, perhaps it was all the goddamn antiepileptic drugs he has to take, or perhaps the culprit was his high protein intake that came on the heals of the ketogenic diet. But like everything with Calvin, no one knew for sure. The nephrologist wanted to put him on a drug to improve his kidneys' condition and to avoid stones. Another drug, I thought. Ain’t gonna do it. My hunch told me that his relatively high protein intake (what mother knows how many grams of protein per kilo of weight their eight year old eats? I do) and when we reduced the protein in his diet his urine calcium to creatinine ratio dramatically improved, sans drug.

While Calvin was on the ketogenic diet we had to check his urine twice daily for ketones. Since he wasn't potty trained (still isn't) we’d have to put cotton balls in his diapers to absorb the urine. Then we’d press the soaked cotton balls through a large syringe wringing the urine out onto a test strip. On top of those tests we did a complete urinalysis plus calcium-creatinine ratio every three months. Calvin has had several sonograms and twice as many visits to the nephrologist. Now, with this good news in hand, we don’t have to do any of it for two years! One less test. One less trip to the hospital for imaging. One less doctor’s appointment. One less reason to have to consider more drugs. One less thing to worry about, which is the best kind of news I can get.

photo by Michael Kolster

triumphs

Recently, a thoughtful reader left a comment to my blog post, parent perspectives. It read:

These are all difficult stories. I share in them with my child. But, I was wondering do you have any story that had a turn for the better? That would be good stimulus for us all!

I mulled the words over in my mind for a long while, tried to think if I could remember any stories of triumph over epilepsy. After a while I was able to come up with a handful at best. There is the story of my friend Jim Abrahams' two year old son, Charlie, whose thousands of stubborn seizures stopped after going onto the Ketogenic Diet. He'd had to stay on the rigorous, exacting diet for about five years, if memory serves me, but he hasn't had a seizure since. Charlie is now a healthy young adult. Then there is my friend Susan Axelrod's daughter, Lauren. After eighteen years of persistent seizures, failed trials with over twenty drugs, dietary therapy and one or two brain surgeries, they finally discovered a combination of drugs that stopped her seizures. And then there is my friend Michelle's sweet boy Miles, who has Down syndrome and suffered seizures for many years. He'd tried several medications plus the Ketogenic diet and his seizures finally stopped. I am unclear if the therapies worked or if he simply outgrew the epilepsy. What is clear is that now his body and mind can be free to develop at a better pace.

In all three cases I have little doubt that the years of seizures and drugs took a major toll on the children's development. In Lauren's case she is significantly developmentally delayed and still has to take three drugs every day which, regrettably, don't come without side effects, and she may well have to take them for the rest of her life. I also have little doubt but that these children remain brilliant stars in the eyes of those who love them.

Seeing things from a different perspective, and though I would give anything—ANYTHING—for Calvin to be healthy, seizure free, drug free, able to walk and talk and run and play, I have found a rich and beautiful life nonetheless, one that my friend Elizabeth, whose daughter Sophie has acute epilepsy, reminds me is also totally strange. I have encountered feelings to a depth I had no idea was possible—joy, anger, frustration, empathy, love, grief. I have learned to honor these feelings, every one of them, as part of being human. I don't fear them, I don't try to sweep them under the rug and I definitely don't hide them. They are part of me and, to a great extent, exist in such profundity because of Calvin and who he is. And the mere fact that I can say this about myself, that I have a rich and beautiful life, is one significant triumph over epilepsy.

parent perspectives

Sometimes I feel like no one gets it. Yesterday I had to bring Elija to the ER because of some rapid seizures. I’m having a hard time getting him to take his medication because one of his new symptoms is tongue thrusting and excessive drooling. He has to take liquid Depakote three times a day, two syringes full each time. So clearly this is a constant struggle. I told the doctor how exasperated I am with the situation and said I wasn’t sure what to do. The doctor informed me, quite matter-of-factly, “Perhaps you should try harder.”

Waterville, Maine
 
Today Ronan had several rolling seizures, and when Rick swam with him to the opposite end of the therapy pool, this day before the day of the full moon, I imagined the day when Ronan’s body will not just float away to the other side of the pool—a sight I can barely stand—but will be gone

Santa Fe, New Mexico

Lisbeth was normal and healthy until the onset of her seizures at the age of six due to a traumatic brain injury caused by a viral illness. One of the most painful aspects of this turn of events was the before and after of her/our life. We lost the little girl that she was. It was a death of sorts.  And Lisbeth has had the torture of remembering her old self—popular, spunky, bright—as compared to her new condition with constant seizures, severe learning disabilities and deficits, and days on end of post-ictal fog.

Woolwich, Maine

When he had seizures (every night, multiple times) he would hold his breath. This breath holding would alert the heart to pump even more blood to the brain, making the heart increase in size until a wall finally blew out ... My wife and I live every day missing him.

Auburn, Washington

I heard Elijah behind the sofa banging around and I assumed falsely that he was playing with his toys. My boyfriend came in the front door and screamed. I turned around and there Elijah was, his face ashen gray and his lips blue. He wasn't breathing and his body was rigid.

Waterville, Maine

Poor guy seized when on hands and knees, crashed to the wood floor and broke a tooth - could have been worse as we all hear so often. It still sucked and we are freaking out about how to protect the little guy.

South Portland, Maine

Details about Eoin: no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Newburyport, Massachusetts

Watching her adjust to the Keppra has just reminded me how powerful these drugs are. She was just so out of it during the day. She seems tired and a bit drugged. It stinks because I over-analyze all of her behaviors now ... can't just let her be tired, I am always reading into it. She struggles so much in school.

Cape Elizabeth, Maine

We tried weaning her off her med. Soon as she was off her med, the seizures came back and now she is on double the med that she was on and we still can't stop them. So frustrating. I can't figure out why the same formula of Keto diet and a certain dose of med didn't bring her back to the place where she was seizure free for so long.

Spokane, Washington

We gave her Diastat (rectal Valium) to stop the seizure ... the entire scene at the pool with strangers and my other kids freaking out just added to the situation ... I cannot separate the drama from the actual seizure ... This is awful.

Cape Elizabeth, Maine

Our daughter Savannah was healthy and typically developing until age two.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures "attacks" and "spells," but never seizures, and we were repeatedly told she would outgrow them.  Savannah is now 18 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.

San Diego, California

Our doctor said things to us like "If we don't get these seizures under control your daughter will lose all of the skills she now has and regress." He told us that she would never go to school. He told us that the medications that we were headed for had fatal side effects. I started to research ... and lose it.

San Francisco, California

drawing by Martha Miller

charlie's cure (video)

When Calvin was four years old, after five drugs and one dietary therapy had failed to control his seizures, we decided to try him on the restrictive, rigorous Ketogenic diet. I called the Charlie Foundation asking them to recommend a medical team who could facilitate the diet. Jim Abrahams called me back and told me his story. It was compelling, it was heart wrenching and it was full of hope.

If you can't view the video, please click HERE.

More on the Ketogenic diet at The Charlie Foundation.

crystal ball

It's very easy to kick myself. I'm good at it, especially since Calvin was born. I wish I had some crystal ball into which I could gaze and know all the answers in a blink of an eye. Instead, it takes months—years sometimes—just to begin to figure out the riddle of Calvin's seizures with each various treatment we try in an effort to thwart them, send them off course, obliterate them. As a result, I often look back and kick myself for acting too slowly in certain circumstances.

Why did we keep Calvin on that Ketogenic diet for two whole years when it didn't make a dent in his seizures? I thought, as I watched and listened—headphones on—to the neurologist sitting next to me in the studio of a recent radio call-in show about epilepsy. He said what I already knew: that it only takes a few days or weeks to determine if the Ketogenic diet will be effective. For some, it is very effective. For Calvin, it never was. Instead, it weakened him and robbed his ability to do so many things he'd just mastered, like crawling up the stairs and getting into standing by himself. Why so long? Because I am cautious and hopeful, perhaps too hopeful, holding on with a white-knuckle grip to each new treatment as if my child's life depended on it (which it does) thinking each one will be the silver bullet if I just give it enough of a chance.

I wish someone would shake me and say, it's been two years ... enough already! I suppose the universe did that for me when Calvin stopped tolerating the diet, when his seizures doubled, the result of weaning him from one of the three drugs he'd been on that made him into such a complete zombie. But every incremental change from one drug to another—off of one diet and on to another—takes so goddamn long it's excruciating. Would someone please invent that crystal ball? Until then, the only glassy orbs I can get lost in will be Calvin's indigo eyes and, while they say a lot, they only tell me half the story.

May 2005

soul window

Written by my friend Catherine Taylor

Last night I dreamt that my son Leland hugged me. I put his floppy arms around my neck, hugged him gently and then released. I did it again, never taking his arms from around me, but continuing to alternately hold him lightly and then in a stronger embrace so that he could tell the difference between the two. Finally, I felt him tighten his arms around me, so lightly it would’ve been imperceptible to anyone else, but I was acutely aware of the difference. When I woke, I told my husband about the dream and cried in that way that good dreams can make us cry—as If they’re a portent of what will be some day; that we shouldn’t worry, these things will come to pass, its only a matter of time. In dreams, I’ve seen my son take steps, communicate with us, run.

Leland can’t walk, can’t communicate. He contracted viral encephalitis from a mosquito bite on his twelfth day of life. His brain swelled as much as it could within the confines of his unfused skull plates and fontinel, but it wasn’t enough. He was left with global brain damage, cerebral palsy, Cerebral Visual Impairment (CVI) and refractory epilepsy. Drug after drug eventually fails him, as has the ketogenic diet. Two weeks ago, we had a vagus nerve stimulator inserted into his chest—this device cycles automatically with the goal of short circuiting seizures by sending out an electric impulse to his brain. All hope rests on enough of a decrease in seizure frequency and severity to allow him the chance to develop some skills without the constant interruption of seizures, so that someday, perhaps, my son will hug me back.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

Sweet Leland

parents' perspective

Sometimes I feel like no one gets it. Yesterday I had to bring Elija to the ER because of some rapid seizures. I’m having a hard time getting him to take his medication because one of his new symptoms is tongue thrusting and excessive drooling. He has to take liquid Depakote three times a day, two syringes full each time. So clearly this is a constant struggle. I told the doctor how exasperated I am with the situation and said I wasn’t sure what to do. The doctor informed me, quite matter-of-factly, “Perhaps you should try harder.”

Waterville, Maine
 
Today Ronan had several rolling seizures, and when Rick swam with him to the opposite end of the therapy pool, this day before the day of the full moon, I imagined the day when Ronan’s body will not just float away to the other side of the pool—a sight I can barely stand—but will be gone

Santa Fe, New Mexico

Lisbeth was normal and healthy until the onset of her seizures at the age of six due to a traumatic brain injury caused by a viral illness. One of the most painful aspects of this turn of events was the before and after of her/our life. We lost the little girl that she was. It was a death of sorts.  And Lisbeth has had the torture of remembering her old self—popular, spunky, bright—as compared to her new condition with constant seizures, severe learning disabilities and deficits, and days on end of post-ictal fog.

Woolwich, Maine

When he had seizures (every night, multiple times) he would hold his breath. This breath holding would alert the heart to pump even more blood to the brain, making the heart increase in size until a wall finally blew out ... My wife and I live every day missing him.

Auburn, Washington

I heard Elijah behind the sofa banging around and I assumed falsely that he was playing with his toys. My boyfriend came in the front door and screamed. I turned around and there Elijah was, his face ashen gray and his lips blue. He wasn't breathing and his body was rigid.

Waterville, Maine

Poor guy seized when on hands and knees, crashed to the wood floor and broke a tooth - could have been worse as we all hear so often. It still sucked and we are freaking out about how to protect the little guy.

South Portland, Maine

Details about Eoin: no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Newburyport, Massachusetts

Watching her adjust to the Keppra has just reminded me how powerful these drugs are. She was just so out of it during the day. She seems tired and a bit drugged. It stinks because I over-analyze all of her behaviors now ... can't just let her be tired, I am always reading into it. She struggles so much in school.

Cape Elizabeth, Maine

We tried weaning her off her med. Soon as she was off her med, the seizures came back and now she is on double the med that she was on and we still can't stop them. So frustrating. I can't figure out why the same formula of Keto diet and a certain dose of med didn't bring her back to the place where she was seizure free for so long.

Spokane, Washington

We gave her Diastat (rectal Valium) to stop the seizure ... the entire scene at the pool with strangers and my other kids freaking out just added to the situation ... I cannot separate the drama from the actual seizure ... This is awful.

Cape Elizabeth, Maine

Our daughter Savannah was healthy and typically developing until age two.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures "attacks" and "spells," but never seizures, and we were repeatedly told she would outgrow them.  Savannah is now 18 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.

San Diego, California

Please share Calvin's Story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

drawing by Martha Miller

change on a dime

Some things can change on a dime: traffic lights, the stock market, the look on someone’s face, the weather in Maine, my mood.

Today is Calvin’s forty-third day without a seizure (assuming I didn’t sleep through any.) The last time he went this long between seizures was four and a half years ago. But then, without warning, on day forty-four Calvin had eight complex partial seizures and we had to give him emergency Valium—twice—to stop the cluster from rolling into status epilepticus, a dangerous, sometimes lethal, prolonged seizure. We were left temporarily increasing one of Calvin’s three seizure meds and permanently increasing another. After that he had as few as four and as many as twenty-three seizures every month over the course of the following three years. In an effort to snuff out the seizures we constantly increased his doses, albeit unsuccessfully—until we were finally forced to completely change his anticonvulsant medication regimen. This change, which began with the initiation of one new drug, and the gradual elimination of the three older ones, reduced his seizures to a few every month. But over time, the number of his seizures began to increase, so that we had to add a second drug—then a third—to his already powerful drug cocktail.

So, although it might seem reasonable—because of this forty-three day stint—to assume that we can breathe a sigh of relief, relax our shoulders a bit and put our fears on the back burner, we cannot. For over five and a half years the seizures have eventually found a way around the drugs, burst through the barrier, like a crack in a dam, flooding Calvin’s brain with electricity gone haywire.

So, when I hear the cell phone ring while Calvin is at school, I still flinch. When I see him slumped in his jumper I run to his side. When I hear him shriek in the tub my heart leaps out of my chest. When he laughs hysterically I feel that sickeningly familiar suspicion that a seizure is on its way.

A friend I grew up with has a nine or ten year old daughter, Olivia, who has epilepsy, and had uncontrolled seizures for years. This past summer Olivia began the Ketogenic diet, a rigorous, exacting high-fat diet aimed at curbing—or stopping—seizures. Calvin tried it for two years without success. Olivia was on it for just a few days before her seizures completely stopped. Since June, Olivia had been seizure free and had begun reducing her anticonvulsant medications, even discontinuing them for a few days. Shortly thereafter, she had thirty atonic “drop” seizures in one day. Atonic seizures, though brief, are dangerous, even life threatening, as the seizure causes the total loss of muscle control and the victim abruptly drops to the ground, often breaking their nose or teeth or causing serious head injuries that can prove to be fatal. Olivia had to reinstate her drug regimen.

So, like I tell people when I meet them, epilepsy is not a benign disorder where you take a pill and everything is okay. It’s not. Like the weather in Maine, it can change on a dime.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s as easy as pushing a button.

One of Calvin's electroencephalograms - photo by Michael Kolster

déjà vu

Since last Monday—in a week’s time—we’ve taken Calvin to Boston to see the neurologist and dietitian, to draw seven vials of his blood and collect his urine. Then we took Calvin to his pediatrician to ensure that his ear infection had cleared up. Next he went to the hospital for a sonogram on his kidneys because of dubious lab reports, and yesterday Calvin faced a double-whammy having more blood drawn and an X-ray of his abdomen. We are headed to the nephrologist on Thursday.

We’re living a dreadful déjà vu of the early years when nearly every week we’d bring Calvin to see one specialist or another, often several. At one point in time, in the space of eighteen months, we’d seen the neurologist, the endocrinologist, the nephrologist, the geneticist, the gastroenterologist, the developmental pediatrician, the dietician, the urologist, the pulmanologist, the sleep specialist, the neuro-ophthalmologist and, of course, on several occasions, our beloved pediatrician. Add to this list diagnostic testing including 24 – 72 hour electroencephalograms, blood draws, nuclear medicine CAT scans, sonograms, MRIs, X-rays, one sleep study, and one eye surgery. And we can’t forget the trail of physical therapists, occupational therapists, the speech and language pathologists and teachers of the visually impaired who came into our home weekly. We had ourselves a bona fide cornucopia of experts trying to help us figure out what the hell was wrong with our kid, and what to do about it.

Usually, the specialists’ solutions were (and still are) to try medicine, though we’ve tried dietary therapies too. Not including the shopping list of drugs he was given as a preemie in the NICU, Calvin has been on Nystatin and Lactulose and Reglan and Erythromycin and Zantac and Miralax and Potassium Citrate and Carnitor and Neurontin and Melatonin. He’s had Diazepam and Atavan and Phosphenytoin and Amoxicillin and Cefprozil and Augmentin and Dilantin and Trileptal and Keppra (twice now) and Depakote and Clonazepam and Zonegran and Lamictal and Clobazam and Rufinamide. And he’s only seven years old.

I’m hoping that what the doc finds on the sonogram and X-ray is benign, that the blood work comes back normal this time and that we can take Calvin off of two more drugs that he’s been on since starting—and ending—the rigorous, high-fat Ketogenic diet that didn’t work to curb his seizures.

The daily intake of drugs is a reality for anyone who has epilepsy assuming they are not candidates for neurosurgery or the vagus nerve stimulator, like Calvin, and even then sometimes drugs are still necessary. Most people afflicted with epilepsy spend a lifetime on drugs, and while some enjoy seizure freedom it doesn’t come without the familiar, daily and long term consequence of drug side effects, most definitely the kind of déjà vu nobody would want.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It won’t hurt you one bit.

photo by Michael Kolster

trade-offs

Today is day fifteen since Calvin’s last observed seizure. I say “observed” because we never really know if some of his vacant stares, manic laughter or shoulder shrugs are seizures. It’s the longest period between seizures since early April. The next record to break, if he makes it past today, is seventeen days, which happened three different times back in the first few months of this year. At that point Calvin hadn’t gone seventeen days between seizures in almost two years.

Keppra, which we just added to the other two antiepileptic drugs in his regimen, is one he’s tried before, five years ago when he was just two and a half. It worked to extend the period of time between seizures, once as much as six weeks, but he still had episodes of status epilepticus, suffering as many as ten or twelve in a day that would roll into a prolonged tonic-clonic (grand mal) seizure lasting twenty minutes or longer. On one occasion we thought we might lose him during a forty-five minute seizure.

Epilepsy, seizures and drug treatments were new to us back then. When the Keppra, at a relatively high dose, wasn’t stopping the clusters of seizures that continued to occur, his former neurologist pulled him off in favor of an older drug known for its efficacy but also for causing bad side effects. It hadn’t occurred to me at the time to ask if adding a second drug to his Keppra protocol—one good for stopping clusters, such as a benzodiazepine—might work. Makes me wonder now, woefully, if perhaps we might have spared Calvin five years of hundreds of miserable seizures, debilitating drug side effects and scores of missed milestones and lost skills.

Instead, we moved Calvin from a drug that had no obvious bad side effects, at least none that I remember, to a drug, Depakote, that turned out to be less effective, created a zombie-child, robbed him of many of his newfound skills and began damaging his liver. The gradual increase in seizures he experienced on Depakote did not abate for years after coming off of it, even when taking three antiepileptic drugs at one time plus rigorous dietary measures.

So, although Calvin is “enjoying” apparent seizure freedom these past fifteen days, he’s been a raving lunatic at times, laughing so hard he collapses, flailing so spastically at mealtimes he can’t manage to try using a spoon, (which he’s still a novice at, though we’ve been practicing for over five years,) whipping his head back and forth so wildly that his neck cracks, (though perhaps that is his goal,) and crying at times for reasons we cannot begin to understand (Calvin almost never cries anymore.) At best, drug treatments are an abysmal trade-off for seizures—a band-aid, not a cure.

Please share Calvin’s Story with others. Help bring us one step closer to a much-needed cure for epilepsy. We do the hard work—you just push a button.

vicious storm

Yesterday morning I wrote in the journal “day 10.” Calvin has been doing great lately, a good string of days since his last seizure and little to no manic behavior to speak of, save some hyperactivity at meals once in a while which we chalk up to being excited about eating. But we haven’t been able to eke out much more than nine or ten days between seizures in recent months, even with several drug increases. As a result his balance tends to be precarious and I am convinced it is due to the medication.

All day long Calvin refused to walk his usual paths around the perimeter of the house. Instead, he’d collapse, laughing hysterically at our coaxing, then just plop himself on the ground and sit there. So, Michael and I buckled him into the stroller, put Rudy on the leash and took a walk across the college campus to get some ice cream.

First-year students are beginning to arrive for orientation and I watched a handsome young man say goodbye to his sharp dressed parents in front of a stately old brick dormitory. I’ll never do that with Calvin, I thought, and felt the twinge of loss that I probably feel daily for one reason or another.

A few minutes later, ice creams in hand, we parked ourselves on a bench aside the shack as the Blue Angels streaked across the white sky, their deafening thunder enough to make me want to cover my ears. Rudy, unfazed by the racket, sat attentively waiting for the last bit of cone that he knows I usually reserve for his treat. “Is it okay to give Calvin a bit of my yogurt?” Michael asked, “it’s sugar free.” Having recently liberated Calvin from his rigorous, exacting Ketogenic diet, I said, “probably.” Michael spooned in a bit of his mixed berry frozen delight and Calvin laughed, the yogurt dripping out the side of his half open mouth. He seemed to like it, though perhaps his peculiar laugh was more due to a painful ice cream headache, or worse—a looming seizure.

The entire way home Calvin squealed and writhed spasmodically in the stroller, which he hasn’t done much lately. The events of his day caused us to worry that a seizure was brewing, but he got through bath and dinner unscathed, and then led us outside to walk around the house clad in skinny, unmatched pajamas and felt slippers. Michael took the reins while I grabbed my camera. The fading light was beautiful, it was the calm before the storm—Hurricane Irene on its way. As Calvin and Michael circled around the car I picked off a few good shots then noticed smiling Calvin go stone-faced and silent. “Uh-oh,” I said and crouched down to regard his face. He stiffened and pitched back into Michael’s arms, who then carried him like a bundle of sticks, or a board, into the house. By the time we got Calvin to the couch his face was dark and ashen, like the skin of an unpicked blueberry. We caressed his face, Michael kissed his head, while we waited for it to end.

Thankfully, the seizure was shorter and less violent than most, perhaps a sign that the drugs are helping, albeit not well enough. Sure that it was over Michael carried our sweet little disoriented boy upstairs and tucked him into bed, then slung the baby monitor around his head to listen. Outside the rain began to fall and the wind kicked up. Our first hurricane in Maine was about to arrive, perhaps our last, but for Calvin it’s one vicious storm after another.

day eleven

A pretty good string of days ended with Calvin’s seizure yesterday morning—day eleven.

I knew something was amiss when I was trying to feed him breakfast; he was a whirling tangle of spastic limbs—uber-hyper. Nearly poked me in the eye with an errant fist. So that he’d let off some steam I slid him into his jump-up. Almost immediately he started shrieking. His body tensed, teeth clenched in a devilish grimace, fingers working madly, obsessively rubbing together, while he pounded the floor with booming heels. I hadn’t seen this irritable behavior in days and it served as a bad omen.

While sipping my cold coffee on the couch I noticed Calvin still. I called his name to see if he’d react, his back turned to me, slumped in the jumper sucking his thumb, as he often does. No response. So I lifted his face to mine, pried out his thumb to see bluish lips and flushed cheeks on a pasty complexion. As quickly as I could I unbuckled the straps, hoisted him out and over to the couch. Though it began like a partial seizure I knew it was building into a nasty convulsive tonic-clonic.

I grabbed my camera from the coffee table and filmed it, placing my other hand softly, yet firmly, on Calvin’s shoulder as the seizure blazed for three more minutes. The color of life fades sickeningly from his face until he looks like a zombie. His eyes quiver and blink, in what appears as time-lapse, and stare off into nothingness—like hollow orbs—all at the same time. The docs tell me he is unconscious, but I always wonder, especially when I witness the frightened expression on my boy’s sweet little face.

So, eleven days since the last seizures and I can’t really say that the increase in drugs is helping much. These relentless seizures—they just keep on coming no matter what we do. Five years of them. Hundreds. Unfortunately Calvin has to be a guinea pig. We try one drug until we’ve maxed it out and then we try another—sometimes as many as four at a time. We try special, rigorous, exacting diets, and then we try another. Nothing has worked. He’s taken eight different anticonvulsant medications since he was two years old. Who knows what they’ve done to his developing brain? I know in my gut that the drugs are in great part why he can’t walk by himself, though he’s seven years old.

It’s god awful, this epilepsy, and it’s looking more and more like Calvin has been handed a life sentence. But we’re right there with him, hand in hand, all the way.

remembering kelli

Summers, as a kid, I spent hours at our community pool. In the morning I’d ride my bike there, a ratty towel draped across the back of my neck wearing my swimsuit under a t-shirt and cut-offs. Swim practice was an hour long, steam rising in the sunlight off the glistening water. After practice my friends and I spent as long in the shower, pulling the knotted beige cord to keep the spray of hot water flowing over our nimble bodies.

Most of the time I’d hang at the pool for what seemed like all day, slathering my limbs with cocoa oil and baking on the hot cement deck, then lazily dipping into the cool water or climbing the high-dive ladder to do endless back flips.

Me and my teammate Debbie used to sit atop the stack of blue wooden starting blocks that were shoved up against the cinder block wall under the eves, right next to the PA speaker. We'd listen to disco tunes on the radio. Our favorite was Best of My Love by The Emotions. We knew all the words and had the groovin’ moves to go with them.

That memory has never faded, but into high school then after college Debbie and I didn’t see each other much. She was one of my first friends to be married but by then we had drifted apart for no other reason but space and time.

I heard from a mutual friend that her first child, Kelli, was born with a serious seizure disorder. During the first few weeks of her life she suffered two to three hundred seizures a day, so many that she was rendered incapacitated—wheelchair bound—her brain not having a chance to recover and learn between the endless battery of electrical storms. I never reached out to my friend, whether out of fear or ignorance, I’m not sure. Perhaps a little of both.

Sometime after Calvin was diagnosed with epilepsy I wrote her a letter. It had probably been at least twenty years since I had last seen her. She called me and told me about her her adorable, beloved daughter, and how she had died in her teens. She described the litany of treatments her child had endured—many the same as Calvin—toxic drugs, rigorous diets, painful blood draws, prolonged hospital stays, and more. My heart sunk and I felt a wretchedness over the lost opportunity to have reached out to her sooner showing compassion, perhaps even to have met her special girl.

Debbie had studied to become a nurse in great part due to her experiences with Kelli. She has a tattoo of her daughter’s name on her ankle to commemorate how Kelli changed her life, made her stronger. It is beautiful. And though I never met her, I think of that remarkable child who suffered so much—needlessly—fought so hard and no doubt touched many, many lives. I believe Kelli must have had the same calm glow I remember of her mother.

mealtime

Calvin has never sat down for a meal with us. Ever since he began eating solid food he’s been spoon-fed which requires our complete attention and, for one reason or another, he’s never been able to eat the same foods we eat. Calvin can manage finger foods, but we must dole out the morsels one by one, otherwise he’s liable to put an entire handful of blueberries into his mouth all at once and choke. And he can't use a spoon by himself.

For the past four years he has been on a couple of special diets aimed at curbing his seizures, and though we saw an improvement in his persistent crying we haven’t seen a reduction in seizures. However, for fear of increasing seizures, plus our need to change only one variable at a time—at this point being his seizure meds—Calvin remains on the diet.

Every food Calvin eats is weighed on a scale to the tenth of a gram, which is equivalent to about one drop of olive oil. I refer to a grease-stained, water-marked print-out of the meals I’ve created online. His dietitian gives me precise goals for fat, carbs, protein, calories and ratio of fat to carb/protein.

First, for Calvin’s Omega-3s, I pierce two fish-oil gels with a paring knife and squeeze the contents into a small bowl that has been zeroed-out on the scale. I top off the oil totals with olive oil. Next I add yogurt, a particular high-fat Greek strained yogurt for which I scour nearby stores buying six or seven tubs at a time just to keep us in stock. Stevia, a carb-free sweetener, gets sprinkled into his yogurt then it’s all stirred into a creamy emulsion. Every meal includes this yogurt-oil mixture, spoonfuls into which I put his various medications.

For dinner Calvin almost always eats chicken with avocado and fruit. Again, I zero the scale, chop and weigh the pre-cooked chicken thighs, chop and weight the avocado then add the mayonnaise and warm it in the microwave for fifteen seconds. Lastly, I wash and chop strawberries into finger food-sized pieces and, voilà! I’m done. Except, of course, for his meds.

Twice a day Calvin gets a compound of potassium citrate to prevent metabolic acidosis and kidney stones while on the diet. I shake the clear red bottle vigorously, invert it and draw up the fluid into a 5ml syringe. The pink liquid goes into the water he drinks out of a baby bottle or sippy cup. He also gets his seizure medicines twice a day. The first, a cousin of Valium, is a small white round scored pill. I carefully mount it on the razor blade inside the pill cutter, close it carefully and tap until the pill breaks. He takes one and a half of these. The second is a new anticonvulsant. He gets two and a half of these oval salmon-colored gems.

So, on the rare occasion that the three of us go to a deli or a diner (we pretty much have to bypass any other type of restaurant except a drive-in) Calvin sits in the high-chair, drinks his water and plays with toys while we eat, having already had, or about to have, his precisely calculated and weighed meal at home.

I dream of one day taking Calvin to a restaurant for dinner, ordering burgers, fries and chocolate malts all around, leisurely enjoying the atmosphere while crayon coloring lobsters and maps of the United States printed on thin scalloped-edged paper placemats. 

photo by Michael Kolster

missing pieces

When you have a disabled child, every day—perhaps many, many times a day—you notice something that should be there isn’t. Like the conundrum of the sock that goes missing and never turns up. But of course, it’s not at all like a missing sock.

Sometimes it’s subtle, like noticing that your dog understands simple questions and commands, but your seven-year-old doesn’t—or does but can’t comply—because something’s missing.

Perhaps during a visit to the Frosty Freeze you realize that you, your husband and even your dog can enjoy a delicious scoop of ice cream but that your son can't enjoy the favorite summer treat of seven-year-olds because he is on some crazy diet for epilepsy that no one else in their right mind would willingly try except diet-fanatic adults.

Or, a simple stroll down the block headed to the playground becomes a major struggle just to get your child to walk hand in hand with you—and straight—while persuading him not to sit down in the middle of the sidewalk every few steps. You only get past two houses on the block before you must abort the mission.

Often you hear kids passing by chattering with their parents about their friends or the weather or the new scooter they want to get and it reminds you of how you have absolutely no idea what goes on in your own kid’s head—ever.

And when you see your child’s development slow like molasses you understand that what is missing is a significant and important part of their brain. Somehow it just went missing, or perhaps it was never there in the first place. No one knows.

But then there are times when everything comes into focus, when your sweet goofy little kid, like no other kid in the world by a long shot, looks you right in the eyes—something he rarely does—leans into you with outstretched arms from the other side of the high chair tray and pulls you in close, kneads the skin at the nape of your neck with little fingers, giggles and smiles and won't let go. That’s when it feels like there is nothing missing at all.

not what you think

The other day a friend of mine walked her dog by the house as I was gardening. I greeted her in my grubbies—a rolled up pair of worn green twill pants, yellow rubber ankle boots, a ratty sweatshirt and dirty gloves. I’d been wearing it all for the past three days to save on laundry, and because I throw on the first thing I can find on the floor from the night before just so I can get out into it as soon as I load Calvin onto the school bus.

We talked of dogs, of kitchens, of the sucky spring weather we’ve been having, of lilacs, daughter’s weddings, dresses, son-in-laws to be, goats and Calvin. She reads the blog. She mentioned how she had no idea that Calvin had as many seizures as he does, that she thought he only had one every few months, that is, until she started reading the blog.

I told her about how some people have hundreds of seizures every day, every hour, every minute, and that their brain doesn’t have a chance to rest, to learn. For these unfortunate souls—and they are not few—there aren’t many options, if any, for seizure freedom. I told her of one uncommon therapy called a medically induced coma. This therapy is reserved for the very worst cases of epilepsy—those where the seizures are pretty much non-stop around the clock—when other medicines and diets don’t work, and when the patient isn't a candidate for brain surgery because of the types of seizures they have, like Calvin. The induced coma is risky and has an extremely high mortality rate. Even if it works the seizures often come back after months if not weeks.

Other people, in an effort to cease their seizures, have half of their brain removed in what is called a hemispherectomy. I kid you not. Others have the connection between the two sides of their brain severed, prohibiting the focal seizures from spreading to the entire brain. Still others have a pacemaker type of device surgically installed in their chest cavity with a wire that wraps around the vagus nerve in their necks sending regular electrical impulses to the brain that somehow reduces seizures. Many of these people still have to continue to taking antiepileptic medications to fully control their seizures.

Calivn, however, is in a terrible limbo unable to enjoy seizure freedom even while taking multiple anticonvulsants plus a rigorous, exacting high-fat diet. He is unable to benefit from brain surgery and too young to try the nerve stimulator. So Calvin, like hundreds of thousands of other children and adults, must continue to suffer the scourge of seizures while having to endure side effects from mind altering, mind numbing, mind f-ing drugs that send him further and further into retardation. And don’t forget the painful blood draws, the sleepless nights, the worry, the dread, the bleak outlook, the mortality.

Epilepsy is not what you think. Before Calvin started having seizures I thought that epilepsy was a benign condition for which you take a pill and everything is okay. Well, let me tell you again it is not. It is the furthest thing from that. It is a virtual hell that can strike anyone at any time and there is nothing you can do to prevent it from happening to you or someone you love. It just happens.

Please share Calvin’s story with others to promote epilepsy awareness. Help bring us one step closer to a cure. It’s not hard. Just do it one story at a time.

Calvin's EEG October 2008 photo by Michael Kolster