bombshell

Fifteen years ago, I reclined in the same green couch I'm sitting in now, resting and reflecting as I watched the world go by outside a southern window. I was no longer allowed to walk the dog or swim a mile or grocery shop. I wasn't allowed to go outside. Michael and I had stopped attending our hypnobirthing classes, stopped practicing our script, and I had stopped showing up for my prenatal yoga classes. I and the baby in my belly, who rarely and barely moved, and who still had six to eight weeks to develop, simply had to sit and wait it out.

Days earlier, a doctor had dropped a bomb on us. A thirty-two-week sonogram had revealed an anomaly in our fetus' brain: enlarged lateral ventricles, aka ventriculomegaly. I'll never forget the doctor's words to us:

"This is something you need to worry about." 

The discovery had led us to Boston where within one twenty-four-hour visit I underwent numerous additional sonograms, a CAT-scan, several blood tests, one fetal MRI, and a five-hour IVIG, otherwise known as intravenous immunoglobulin. All of this was because of an opinion held by bunch of pediatric neurologists, radiologists and neonatologists who thought they had found evidence of intraventricular and subdural brain bleeds leading to a blocked fistula. This blockage, they hypothesized, caused a backup of cerebral spinal fluid and the ballooning of our baby's lateral ventricles which in turn damaged the surrounding white matter. Their causal theory for the bleeds, based on a false-positive blood test result, was that there was a platelet incompatibility between me and Michael triggering my antibodies to attack my fetus' platelets. The consensus was a scheduled, thirty-five-week cesarean at Boston's Children's Hospital meant to avoid further trauma and injury which a vaginal birth might cause.

After the bombshell, I remember being exhausted, anxious and afraid. I don't remember being brave. I imagine Michael felt the same. So we sat tight in the frigid winter weather, wondering if our baby would be okay, wondering if he'd ever crawl or walk or talk or, as one neurologist told us was possible, might be completely normal. I remember wondering, after such an uneventful and healthy pregnancy, why it turned out this way.

I still wonder to this day.

February 3, 2004

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.

everything you wanted to know about benzodiazepines but were afraid to ask

. . . and, or, your or your child's doctor didn't tell you or know about in the first place.

Below are some outtakes from the Ashton Manual, a critical guide—a bible, really—for current and potential benzo users to peruse, study, familiarize and perhaps memorize.

Calvin is in his fourth year of weaning his second benzodiazepine. He is down to less than one milligram per day from a high of thirty-five—an enormous dose for a pint-sized child. The first benzo, clonazepam, was prescribed when he was just three years old. Had I known then what I know now, I would have flatly refused his neurologist's suggestion to put Calvin on it, particularly while simultaneously starting him on two other drugs. Alas, as neurologists seem to do, the doctor downplayed its side effects, neglected to inform me of the body's tendency for rapid habituation to it, and assured me it was meant as a bridge drug to be used for only a few weeks. It took another benzo, clobazam, to safely come off of it two years later. Calvin has been on clobazam for the good part of a decade. Again, had I known then what I know now. Sigh.

Paradoxical Stimulant Effects
Benzodiazepines occasionally cause paradoxical excitement with increased anxiety, insomnia, nightmares, hypnogogic hallucinations at sleep onset, irritability, hyperactive or aggressive behaviour, and exacerbation of seizures in epileptics. Increased aggression, hostility, and impulsivity occur in some subjects and may result in attacks of rage and violent behavior. 

Less dramatic increases in irritability and argumentativeness are much more common and often remarked on both by patients on long-term benzodiazepines and by their families.

Impairment of Memory
Benzodiazepines have long been known to induce anterograde amnesia. 

Tolerance
Tolerance can develop to all the actions of benzodiazepines, although at variable rates and to different degrees. Tolerance to hypnotic effects develops rapidly: sleep latency, stage 2 sleep, slow wave sleep, dreaming, and intrasleep awakenings all tend to return to pretreatment levels after a few weeks of regular hypnotic use.

Tolerance to anxiolytic effects seems to develop more slowly, but there is little evidence that benzodiazepines retain their effectiveness after 4 months of regular treatment, and clinical observations suggest that long-term benzodiazepine use over the years does little to control, and may even aggravate, anxiety states.

Structural Brain Damage
The question of whether prolonged benzodiazepine use can cause structural brain damage remains unanswered. It remains possible that subtle, perhaps reversible, structural changes may underlie the neuropsychological impairments shown in long-term benzodiazepine users.

Withdrawal Symptoms
Abrupt withdrawal from high doses can cause a severe reaction, including convulsions and psychotic episodes. Withdrawal symptoms from therapeutic doses are mainly those of anxiety, both psychological and somatic, but certain symptoms such as sensory hypersensitivity and perceptual distortion may be especially prominent, and depression may sometimes be a prominent feature.

Long-term benzodiazepine use is associated with more severe adverse effects, including memory impairment, depression, tolerance, and dependence.

Mechanisms of Withdrawal Reactions
Drug withdrawal reactions in general tend to consist of a mirror image of the drugs' initial effects. In the case of benzodiazepines, sudden cessation after chronic use may result in dreamless sleep being replaced by insomnia and nightmares; muscle relaxation by increased tension and muscle spasms; tranquillity by anxiety and panic; anticonvulsant effects by epileptic seizures. These reactions are caused by the abrupt exposure of adaptations that have occurred in the nervous system in response to the chronic presence of the drug. Rapid removal of the drug opens the floodgates, resulting in rebound overactivity of all the systems which have been damped down by the benzodiazepine and are now no longer opposed. Nearly all the excitatory mechanisms in the nervous system go into overdrive and, until new adaptations to the drug-free state develop, the brain and peripheral nervous system are in a hyperexcitable state, and extremely vulnerable to stress.

Psychological Symptoms of Withdrawal
Excitability (jumpiness, restlessness), insomnia, nightmares, other sleep disturbances, increased anxiety, panic attack, agoraphobia, social phobia, perceptual distortions, depersonalization, derealization, hallucinations, misperceptions, depression, obsessions, paranoid thoughts, rage, aggression, irritability, poor memory and concentration, intrusive memories, craving.

Physical Symptoms of Withdrawal
Headache, pain/stiffness (limbs, back, neck, teeth, jaw), tingling, numbness, altered sensation (limbs, face, trunk), weakness ("jelly-legs"), fatigue, influenza-like symptoms, muscle twitches, jerks, tics, "electric shocks," tremor, dizziness, light-headedness, poor balance, blurred/double vision, sore or dry eyes, tinnitus, hypersensitivity (light, sound, touch, taste, smell), gastrointestinal symptoms (nausea, vomiting, diarrhea,,constipation, pain, distension, difficulty swallowing), appetite/weight change, dry mouth, metallic taste, unusual smell, flushing/sweating/palpitations, overbreathing, urinary difficulties/menstrual difficulties, skin rashes, itching, seizures.

Photo by Michael Kolster

in defense of our children

I'm compelled to share this important story written by Health Impact News/MedicalKidnap.com Staff

Child Protective Services Threatens To Kidnap 7 Year Old in California When Parents Try to Transfer to Different Hospital

Kennedy May Willey after being transferred to UCSF in San Francisco.

Kennedy May Willey’s first seizure took place when she was nine months old, on December 26, 2008. It occurred 8 days after receiving her DTaP vaccination. The seizure lasted over 40 minutes and entailed a dramatic helicopter ride to the nearest major hospital in Texas which was over an hour away. Fortunately, little Kennedy rebounded and within a few hours the doctors wanted to send her home, saying that the seizure that had nearly killed her was a “normal febrile seizure.”

Her mother Dawn knew there was nothing “normal” about it and insisted that they keep Kennedy overnight for observation. A nurse told her she was paranoid, but within five minutes she was seizing again.

 

Dravet Syndrome Diagnosis

Eventually, two pediatricians, one allergist, one cardiologist and no less than six neurologists later, Kennedy was diagnosed with Dravet syndrome. This was not good news. For parent or child, Dravet can be a terrifying diagnosis.

The prognosis is anything but encouraging, the mortality rate is exceptionally high — 15-20% — with most dying suddenly while asleep, and seizures are severe, lifelong, and generally bring a host of developmental, behavioral and medical issues affecting every aspect of the child’s life.

Most children with Dravet are given anti-epileptic medications, even though Dravet does not tend to be responsive to medications. After reading story after story of children for whom medications made little to no difference, Kennedy’s mother, Dawn, felt there had to be a better way.

Through a series of fortunate events (apologies to Lemony Snicket), she was led back to her chiropractor and DAN! (Defeat Autism Now!) doctor who was eager to help, and the two struck up a collaborative relationship. Over time, they came to believe that Kennedy, like so many other medically complex children, had a “compromised gut” and if her gut were healed her health could be greatly improved. They started her on the Specific Carbohydrate Diet (SCD) and eventually transitioned to the Gut and Psychology Syndrome (GAPS) diet.

 

“Miraculous” Results through Diet

The results of her diet change approached the miraculous. Dawn estimates that Kennedy’s symptoms improved about 98%, with a huge reduction in frequency, duration, and intensity of her seizures. In addition, they no longer occurred randomly throughout the day, but typically occurred only when she was asleep. Children with Dravet’s are expected to regress from age two onwards due to the tremendous stress the seizures put on the developing nervous system.

Kennedy, however, has been beating the odds. She is now seven years old and generally lives a full “normal” life with her family in California. She attends a regular school, took surfing lessons in Costa Rica, plays tennis and the piano, and loves to swim and ride her bike.

Relapse: Seizures Increase

But life is always a little precarious with a severe chronic illness, and recently the Willey family came face to face with their worst nightmare. Last week Kennedy experienced an increase in seizures. The seizures began “clustering” requiring medical attention.

On Thursday, April 21, she was taken to her local hospital, but they decided she needed to transfer to a larger hospital: Children’s Hospital of California (CHOC) – Orange County. Dawn and her husband, Carl, were upset when they heard the news because they had heard numerous horror stories about the head of neurology at CHOC from other parents and doctors.

From minute one, they say their fears were confirmed. Dr. Mary Zupanc reportedly swept into the room announcing that she was the foremost expert on Dravet. She allegedly bad-mouthed the Willey’s Dravet doctors and refused to believe that, until a few days before, seven-year-old Kennedy had been running on the beach, leading a “normal” seven-year-old life. She allegedly told the Willeys that there were no “normal” un-medicated children with Dravet.

Of course, the Willeys have pictures and videos of their daughter to back up their claims, but they say Dr. Zupanc refused to look at them.

 

Drug Cocktails Begin and Conditions Worsen

Kennedy was already on two anti-epileptic drugs when Dr. Zupanc added Depakote, a drug that they say had been known to increase Kennedy’s seizures previously. She allegedly went into more cluster seizures and her tongue swelled up. The doctor ordered an EEG, which indicated no seizure activity, but her brain waves were slow.

The Willeys insisted that her “out of it” condition was attributable to the unfamiliar medications. Dr. Zupanc, reportedly not believing the parents’ testimony, insisted there must be some huge underlying problem, probably encephalitis. She allegedly pushed a CT scan and a spinal tap. Kennedy had to be put out for the spinal tap, adding more meds to the cocktail.

On Sunday morning, they allegedly administered more Depakote, which touched off more cluster seizures and a swollen tongue. Clearly evident to the parents, Kennedy was allergic to the medication.

The answer from Neurology? Even more Depakote.

Parents Threatened with CPS

That was when Dawn had had enough. She says she ran in and stepped in front of the nurse who was trying to do as the doctor had ordered. The next thing they knew a neurologist came into the room yelling about getting a court order if they continued interfering with Kennedy’s care. At 11 p.m. that night, a representative from Child Protection Services allegedly knocked on their door and interviewed the underslept, overstressed parents about their “medical neglect” until 1 a.m.

All the while, Kennedy allegedly had been given no food of any kind. Dawn had been begging for a feeding tube since the beginning to help Kennedy with metabolizing all the drugs, but Neurology had convinced them she was in danger of aspirating.

 

Zealous Doctors Want to Expand Treatment Beyond Dravet

Dr. Zupanc, arrived Monday morning accompanied by a large group of doctors and allegedly announced that there was something wrong with Kennedy other than Dravet, and she would be proceeding with in-depth testing, including another spinal tap and a brain MRI with contrast.

Kennedy was reportedly now having subclinical seizures — the second EEG showed eight 10-second seizures – she said, and that gave her grounds to increase the medications.

 

Parents Hire Attorneys in Attempt to Leave Hospital

After the CPS visit, the Willeys knew they had to get Kennedy away from CHOC and Dr. Zupanc. They formulated a plan to move her to UCSF in San Francisco and hired an independent medical advocate and two attorneys.

They weren’t sure if they were doing the right thing, though, until they met with the metabolic doctor who allegedly told them that Dr. Zupanc was conducting a ridiculous fishing expedition and that Kennedy’s body was too stressed for another spinal tap.

They realized that they were fighting for Kennedy’s life.

Carl asked the PICU pediatrician if he thought Kennedy was stable enough to be airlifted to another hospital and he said yes.

They expected to leave CHOC that afternoon, but at lunch time word came down that Dr. Zupanc had blocked the transfer saying Kennedy was unfit for travel.  Carl met with the pediatrician saying, “I beg you to save my daughter’s life and release her. You have the power to do this because you are in charge on my daughter’s floor.” The doctor’s response: “You have to remember that after you leave tonight, I’m still going to have to work with her and deal with this.”

Kennedy was transferred to UCSF in San Francisco.

Transferred to UCSF in San Francisco

After hours of battle, the doctor finally agreed to release Kennedy. The transfer would happen the next morning. However, delay after delay kept them at the hospital till mid-afternoon, and before they left, Kennedy was given a final high dose of medications, taking her to toxic levels.

Kennedy finally arrived in San Francisco on Wednesday (April 29th) and has reportedly been receiving excellent care since then. She is eating real food and smiling again.

 

CPS Threats Followed Them to San Francisco

One might think that this would mean the Willeys could breathe a sigh of relief, with their nightmare finally over.

Unfortunately, that does not seem to be the case. Last night (April 30th) Kennedy’s pediatrician at UCSF came to the Willeys and told them that CHOC had called CPS in San Francisco accusing the Willeys of “severe medical neglect,” saying that among other ridiculous charges they had “denied all meds.”

The representative from CPS in San Francisco interviewed the Willeys and agreed with everyone at UCSF that the Willeys were exceptional parents, CHOC’s complaint was “totally unfounded,” constituting blatant harassment, and the case would be closed.

 

Willeys Want to Warn Other Parents

The Willeys hope this may finally be the end of their nightmare, but they wonder about the next unsuspecting family?

Dr. Zupanc’s information at CHOC can be found here.

Also, the Willeys report that Dr. Maria E. Minon is the Vice President of Medical Affairs at CHOC, and her information can be found here.

The Willeys just want to have the freedom to choose their own medical care and treatment plan without being threatened by CPS because of over-zealous medical authorities who believe their treatments are the only ones available. They do not believe that doctors should try to coerce parents into accepting their methods and pharmaceutical products when other options are available.

dear docs: calvin and cannabis

Dear Deb, Katie, Dustin, Peter, Keelyn, Elizabeth and Tricia,

I am writing because I thought you might be interested in hearing an update on Calvin’s experience using cannabis oil to treat his intractable epilepsy. Feel free to share this with your colleagues.

A BRIEF HISTORY
After being diagnosed with epilepsy when he was two, Calvin was put on Trileptal for a few days before switching to Keppra because of a bad reaction to a prescribed, though erroneous, overdose of Trileptal. Within six months he maxed out his Keppra dose while still suffering frequent bouts of status epilepticus, which always landed us in the PICU. Depakote was prescribed next, on which Calvin became a zombie, lost many emerging skills and began showing initial signs of liver failure. At that point, when he was three, he began the LGIT along with Lamictal, Klonopin and Zonigran, and at high doses of all three, particularly the Lamictal, he began having intense tonic-clonic seizures regularly, rather than the milder, complex partial ones he had been suffering most.

Less than a year after staring the LGIT we switched to the more rigorous Ketogenic Diet. Calvin gained a lot of weight and the diet never put a dent in his seizures; he continued to suffer about a dozen or more each month. He was lethargic and floppy and though his AED doses remained the same, lab tests revealed that, while on the diet, his AED blood levels had increased by as much as thirty percent. We began slowly weaning him off of Klonopin to improve his balance, sharpness, muscle tone and stamina, but during the withdrawal his seizures doubled and he stopped eating everything but yogurt. At that point we started him on clobazam to ease the wean and control his seizures. It helped, though I feared another benzodiazepine.

Since Calvin was not benefiting from, or tolerating, the Ketogenic diet, after eighteen months we began weaning him from it. Eventually, we also weaned him off of Lamictal and Zonegran, and for a few months he did well on clobazam alone, though eventually, even at a high dose, the seizures slowly increased. We added Banzel and maxed out that dose before also adding Keppra again. On that three-drug cocktail he had decent, though not perfect, seizure control, but his behavior became intolerable with frequent bouts of mania, constant hyperactivity, terrible sleeping patterns, poor focus, persistent drool, persistent rash, agitation, aggression and anorexia, not to mention likely headaches and serious gastrointestinal upset.

Calvin’s frenzied behavior forced us to wean him off of the Banzel. His appetite improved and he became slightly less manic. Since coming off of the Banzel Calvin has experienced anywhere between one and five seizures in any given month. From August 2013 through January 2014, on 32.5 mg clobazam and 1625 mg Keppra, Calvin had an average of 3.3 three-minute tonic-clonic seizures per month.

THCA CANNABIS OIL
In February of this year, thanks to the advocacy of Dr. Hagler and Dr. Morrison, I began making a THCa (tetrahydrocannabinolic acid, a non-psychoactive cannabinoid thought to be helpful in controlling seizures) cannabis oil for Calvin using a simple, tried and true recipe I found through extensive research and social networking. We started Calvin on a few drops a day and have slowly increased to a little more than 2 mls per day. Tests from two different labs have shown that my various batches of oils, which I now make almost monthly, contain roughly +/-18mg THCa and +/-3mg THC per ml. This equates to slightly less than 1mg of THCa per pound of Calvin's weight. Other cannabinoids are minimal. Calvin tolerates the oil well and, upon starting it, exhibited improved sleep, focus and calm as well as significantly improved daytime seizure control.

SEIZURE ACTIVITY
Since starting the THCa cannabis oil we have weaned Calvin off of more than 40% of his clobazam. Considering his weight gain, his clobazam dose is half of what it was a year ago. From February to August Calvin experienced an average of 4.1 seizures per month, a slight uptick compared to the prior six months, but considering he is on a serious benzodiazepine wean, I am encouraged.

The most remarkable result I can share with you is that, since adding a 4:00 pm dose of THCa cannabis oil, Calvin’s frequent evening seizures (for over three years his seizures occurred exclusively between 5:00 and 6:30 pm) have gone from one every five to fifteen days to one every thirty-five days or so! However, his seizures have migrated to the very early morning likely due to the fact that we have avoided dosing cannabis oil in the middle of the night for fear of aspiration. I am considering supplementing his regimen with some other kind of cannabis therapy, perhaps adding a high CBD oil to his bedtime dose, but I have more research to do before I commit.

IMPACT
Since starting the cannabis oil and since beginning to wean off of clobazam, not only have Calvin’s evening seizures greatly decreased, but his behavior, focus, balance, stamina, mood, walking and willingness to walk places, have improved greatly. He is calmer and happier, is beginning to make new sounds, and we are all living a much improved quality of life as a result. I am beginning to feel like I am getting my Calvin back again.

Who knows what the effects on Calvin’s brain and development have been from using psychoactive anticonvulsant pharmaceutical drugs for over eight in ten of his most formative years. I can tell you, as a mother, I fear the drugs may have caused as much damage and suffering as the seizures themselves and have ruined his quality of life. They’ve caused headaches and dizziness, gastrointestinal upset, confusion, mania, lethargy, anorexia, apathy, and who knows what else. What I am seeing from the cannabis is different, positive, and I wonder what might have happened if we'd never given him drugs in the first place.

I hope this helps you all and, in turn, helps the patients you care for.

I invite you to read a recent blog post from a friend and mother whose severely epileptic child is also greatly benefiting from cannabis oil therapy. Ours are just two of hundreds of success stories you'd benefit from hearing.

Sincerely,
Christy Shake

i'm not a doctor, but.

Written by Elizabeth Aquino in her blog a moon, worn as if it had been a shell

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months.

Melissa Healey, The Los Angeles Times

September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures.

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy.

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable?

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.

photo by Michael Kolster

faith of my father

The gin and tonic my friend Kellie had given me as I reclined in a bay window did little to ease my worry over my listless two-year-old boy. Calvin slouched limply in my arms in the late-afternoon heat, the cicadas’ buzz splitting the muggy air. Suddenly, the color drained from his face, and his mouth twisted into a grimace, as if he’d eaten something rotten. As the seizure took hold of his brain, his body stiffened into a plank, and his glassy blue eyes rolled back into his head.
 
“Here it comes!” I called, and Kellie and my husband, Michael, came running.
 
Guests who had come inside quickly ushered their kids back out. “Daddy, what’s the matter?” I heard one of them ask from the other side of the screen door. I have no idea what the father told his child or if he even knew what was happening.
 
“Call 911!” I said. Calvin began convulsing, his eyes fluttering, his lips smacking with each new spasm. We turned him on his side and pulled down his diaper. I grabbed the vial of rectal Valium from the pouch in his stroller, cracked off the cap, and carefully inserted its tip into my child’s anus. One, two, three, I silently counted, as I depressed the syringe, injecting enough benzodiazepine to knock a full-grown man out cold ...

—Excerpt from Faith of My Father, which will appear in the August issue of The Sun magazine. To read the entire piece when it comes out, you can subscribe here.

photo by Michael Kolster

dear dr. Rx

Dear Dr. Rx:

I’ve been stewing on this for years, and it’s finally beginning to eat away at me, so I figure it is about time I write. Perhaps writing will incrementally change the status quo, perhaps not, but at the very least it will clear my conscience.

My son Calvin, who is now ten, woke up this morning at 2:30 and never went back to sleep. We changed his diaper, offered him water, which he refused, gave him something for what we thought might be a headache, and got into bed with him. Still, he thrashed and kicked and shrieked and whined. Why? Because he is in withdrawal from a benzodiazepine, namely clobazam.

He started taking this sorry drug over three years ago to quell his seizures and to help wean him off of the first benzodiazepine, clonazepam, both, as you know, relatives of Valium. Clonazepam was prescribed as a bridge drug, not intended for long-term use, yet even in the face of my relentless questioning of this treatment plan, he remained on it for three years. Prying him off of it was painful for everyone, and it took months. His seizures doubled, he stopped eating everything but yogurt and he held his antiepileptic medicine in his mouth for up to ninety minutes at a time. I’m convinced he’d forgotten how to swallow, just one of the countless side effects of benzos and their withdrawal and perhaps one that you are not aware of.

Though you don’t apprise your patients’ parents of the hazards of benzodiazepines, particularly long-term use, you regularly prescribe them for children when they are just toddlers and infants. You prescribe them after a child has failed only two antiepileptic drugs when, if you insist on drug therapy, there are at least twenty others they could try first. Regrettably, you are not alone.

You don’t believe in dietary therapy, in using food as medicine, as you say, though it can help a handful of kids who try it when nothing else has worked. You are leery of medicinal cannabis even though surely some of your patients’ development and well-being—their very lives—might be at stake without it, yet you don’t hesitate prescribing benzodiazepines, which no doubt have far worse and riskier side effects than cannabis, including death.

We’ll be weaning Calvin from his clobazam over the course of the following year, perhaps longer. During that time our little boy will be racked with headaches and nausea, dizziness, mania, mood swings, insomnia, drooling and withdrawal seizures. Luckily, the cannabis oil seems to be calming all of those symptoms some.

Perhaps you’d say that I know nothing about neurology, but I can tell you that I know my child, and I have memorized the list of side effects of too many antiepileptic drugs, and I knew about benzodiazepine withdrawal syndrome though no neurologist told me about it, and I see my child suffer side effects from ineffective drugs, and I can sense—sometimes even smell—a seizure coming, and I’m skeptical when a physician's only solution to a problem of any kind is to throw pharmaceuticals at it. You cannot deny it; they are all bitter pills.

Please open your mind, Dr. Rx, give yourself pause before you sign that next script, think outside of the pill box, for your patients’ sake. The world is full of possibilities if you simply choose to see them.

Sincerely, and with great regret,
Christy Shake
Calvin’s mom

photo by Michael Kolster

doctor strominger

Yesterday, we took a day trip to visit one of Boston's top doctors, a man we've been taking Calvin to see since before he was a year old. His name is Mitchell Strominger, and he is a neuro-ophthalmologist. We came upon him after deciding to ditch a local ophthalmologist, one with a notoriously bad bedside manner, who said that Calvin's vision wasn't bad enough to warrant glasses, though everything Calvin did and didn't do told us differently.

Besides zeroing in on Calvin's vision, not only to help him see better but to improve his development, Doctor Strominger was instrumental in discovering Calvin's hypothyroidism, telling us that the enlarged ventricles in Calvin's brain might be affecting his pituitary gland, which could result in problems with his thyroid functions. He recommended that we bring Calvin to see an endocrinologist. There, we learned that Doctor Strominger had been right, and we started Calvin on a synthetic thyroid replacement.

Doctor Strominger, having confirmed that Calvin's vision was 20/1000—ostensibly five times worse than legally blind—wrote Calvin a prescription for glasses when he was only eleven months old. A year or two later the doc added prisms to the prescription since Calvin had developed a habit of looking over the glasses instead of through them. When Calvin was just five years old Doc Strom performed a flawless surgery, delicately cutting and reattaching the muscles of the eyeballs to correct Calvin's esotropia.

When we told Doctor Strominger that Calvin was taking cannabis oil for his seizures he didn't bat an eye, and agreed with me that the low pressure in Calvin's eye might be due to the oil (one of Calvin's anticonvulsant medications, clobazam, can cause glaucoma, which can be treated successfully with cannabis use.)

Doctor Strominger is gentle and kind, funny and smart and patient. He listens well and explains things clearly. He has cute toys and makes a convincing duck quack. He's one of the good ones, the kind you want on your side, the kind you trust with your kid, the kind you don't mind too much driving three hours to see, the kind who has a great staff, the kind you thank your lucky stars that you ever met.

Thanks, Doctor Strominger. Put simply, you rock.

discretion

The high-risk pregnancy doctor delivered the news about Calvin’s enlarged ventricles which appeared in a sonogram. She said, “Your baby’s brain’s lateral ventricles are enlarged ... this is something you need to worry about ... it could affect I.Q. ... come back in four weeks.” We never saw her again.

Before he was born the neurologist told us that, due to the enlarged ventricles in Calvin's brain, he might never walk or talk. I didn’t want to believe him.

In Boston, the neonatologists tried to assuage our worry telling us that only five percent of babies born at thirty-five weeks gestation needed help breathing. Calvin was one of them.

In his first week of life the neonatologists told us he had terrible Apgar scores and low muscle tone. Several of them described him as “floppy.”

Calvin spent his first week hooked up to leads in a clear plastic box. He had trouble keeping his temperature up, had dangerously rapid heartbeat and respiration and hadn’t developed the suck-swallow reflex. The lactation consultants each gave me different recommendations. One of them instructed me not to look at Calvin while I nursed because it might distract him. I ignored her advice.

Though it was hard work, after seven weeks Calvin eventually learned how to nurse well enough to bring him home from the hospital. He was barely six pounds at that point. A pediatrician told us not to take him outside in case we “ran into” someone. I was never sure what he meant.

At Calvin's first appointment the neurologist repeated the warning that he might never crawl, walk or talk. I still didn’t want to believe him.

Specialists in Boston and Portland studied the absence of white matter in Calvin's brain, his enlarged ventricles, his blood, his body, his muscle tone, his endocrine system, his vision, his metabolism, his protracted development, his genes. Few have gone the extra mile in considering all of the questions that need to be asked and answered. Many resent mine. I ask them anyway. I press for answers.

An ophthalmologist with a notoriously terrible bedside manner said Calvin's vision was poor, but not bad enough to warrant glasses. Everything about Calvin told me otherwise. Then a specialist in Boston tested his vision at 20/1000—five times worse than what is considered legally blind. He was given a prescription for glasses and immediately began seeing the world in more detail, began seeing us.

None of Calvin's specialists mentioned the possibility of seizures, of epilepsy, though its incidence in cases like Calvin's is quite high. Luckily I had prepared myself.

Not a single specialist suggested trying cannabis to treat Calvin's epilepsy. Instead, they balked at my proposal. I went about it anyway with the help of Calvin's pediatrician. Thankfully, the others have come around, and I admire that a great deal.

uncharted territory

Minus eleven degrees outside. My mood is like the weather—icy, brittle, unforgiving, in need of a major thaw. On this first day of 2014 I wonder what lies ahead.

Yesterday, I picked up Calvin’s next month’s supply of Onfi (clobazam), one of his two antiepileptic drugs. A handwritten note on the bag containing it is a reminder for a pharmacist’s consult. Before speaking with her I already understood what it meant: that any change in dose or a discontinuation of the drug followed by reinitiation can cause a serious if not lethal rash called Stevens-Johnson syndrome.

In bed alone, Michael at a New Year’s Eve party, I’m reminded of the anecdotal evidence that medical marijuana can affect Onfi’s blood levels causing its side effects to increase. I wonder and worry if, when I finally start Calvin on his medical marijuana tincture, he’ll suffer worsened side effects from the Onfi—the dizziness, the drooling, the decreased muscle tone, the irritability. I wonder, too, since benzodiazepines and their relatives can cause respiratory suppression, if he’ll have trouble breathing at night or during a seizure and simply expire.

I’m not going into this green therapy lightly. I’ve done months of research trying to find the right strain of marijuana, the appropriate tincture and the best supplier I can find and trust. I think I am almost there, but when I am, there will be the question of dosing. What is the right dose for a kid like Calvin with his unknown kind of epilepsy? There is no hard and fast protocol. This is uncharted territory for parents and for doctors. Calvin is the first patient his neurologist recommended for the treatment, and it took some convincing before he did.

In the meantime, we had all of our blood drawn this week for what’s called a first tier exome sequencing—a test to search for any underlying genetic cause for Calvin’s seizures. Calvin is, again, charting new territory in that he is his neurologist's first patient to undergo this type of testing, which I'd learned about from a friend about a year ago. There are no guarantees they’ll find something, perhaps won’t even be able to decipher the results since the test reveals more about the nature of the DNA than is currently possible to interpret.

All I can do is to hold out hope, to work on my patience, continue to quest for knowledge, chart new territory and try to melt my frigid mood into something malleable, into something that won’t shatter under the weight of it all.

friday faves - lydia's story

Written by Anonymous

My story is just another shitty version of all the others, but it goes like this:

I was turning thirty-nine when I had Lydia, our third child. Normal pregnancy, normal birth ... everything was "normal" until she was almost two years old. Then she started dropping, seizing: atonic, tonic-clonic, myoclonic, absence ... all of them came in a flurry with a fever. There had been some earlier seizure activity that I only recognized as seizures after we learned about them. We were admitted to the hospital after an EEG that the technician implied was "very, very bad" (shame on him!) From there she had an MRI, which left us still pondering the "why?" because everything looked "normal."

I remember thinking please don't let it be a brain tumor. I had no idea that epilepsy was not benign, so I was hoping for epilepsy over a brain tumor. Little did I know, a tumor might have been able to be removed. Little did we know, this F-monster—epilepsy—was here to stay.

In the hospital Lydia began taking Depakote, and it stopped her seizures. Ignoring the doctor’s recommendation I did no research and left with my baby who seemed to be doing fine on the Depakote. Our struggle was how to get Lydia to take the sprinkles and make sure it all went down. Within a week, the seizures returned: all atonic seizures at this point. She dropped like a marionette with its strings cut. There was also some suspicious "blinking" that we learned was subclinical activity, but the blinks lasted longer and looked like the start of a drop. We kept increasing the Depakote until we couldn't anymore—her blood levels were too high—so we added Keppra. The Keppra didn't help, but by this point her doctor had said things like, "if we don't get these seizures under control your daughter will regress and lose all of the skills she has now." Lydia was not talking yet—a warning sign that I had attributed to her being the third child. He told us that she would never go to school. He told us that the medications she was headed for had fatal side effects. He told us she likely had Lennox-Gastau syndrome. I started to research ... and lose it.

We decided to get a second opinion. In doing so we learned that our doctor had failed to tell us to bring Lydia for lab work prior to giving her the morning medications, to get a “trough” level. This was why her Depakote blood levels had kept appearing to be too high. We fired Lydia’s first doctor who was quite young, clearly did not have children, had a poor bedside manner and was not an epileptologist.

Increasing Lydia’s Depakote and removing the Keppra helped while we waited for the new epileptologist to start at our local hospital. Though he was also young, he had a daughter exactly Lydia's age, was very empathic and kind and was far more knowledgeable about epilepsy than the physician we had fired. Still, it took three years of trial and error, allergic reactions and catatonia to get adequate control of Lydia’s seizures, which eventually returned after each drug increase and each "honeymoon period." We had to make a very difficult decision to try Felbatol, which came with so many warnings including a waiver that said we understood the fatal side effects and would not sue the drug company if Lydia died. Meanwhile, Lydia was not losing skills, but she was not progressing much either. The hundreds of thousands of mini seizures, which looked like the start of a grand mal or myoclonic seizure, though lasted only seconds—not even long enough to knock her down—were wreaking havoc on her brain.

Lydia has idiopathic generalized epilepsy ... possibly—though without certainty—Doose syndrome. The majority of her seizures are myoclonic or astatic, so her diagnosis is Myoclonic Astatic Epilepsy (MAE). We are five years into the nightmare, which compared to others' journeys, sounds like a cakewalk. But I have learned that it doesn't work that way. Epilepsy spares no one, really, not even the ones whose seizures miraculously, spontaneously just stop. Lydia will likely not be one of those cases. Her EEG is a mess. She is developmentally disabled and I find myself whispering the word "retarded" when I can see that the new, politically correct designation doesn't mean anything to my parents generation ... and even to some well meaning contemporaries who want it to not really be "that bad."

I would not trade in Lydia for a new Lydia, nor would I refuse having another child if I had been warned this might be possible. But I live on a cocktail of antidepressants and anti anxiety medication. I used to be pro-therapy, anti-drugs until I had my first panic attack five years ago. I have only three, close pre-epilepsy friends who remain after a mass exodus of other friends I later realized I made all the effort to maintain. Our families both live thousands of miles away and are not very supportive. They want to make things better and don't understand that listening and validating are more important than trying to change the subject or focus on the positive. My two oldest children keep me from lingering in dark places for too long. I am a busy stay-at-home mama.

Lydia’s future depends on the discovery of new drugs, new therapies—a cure. It is unlikely that her seizures will relent. This is my story, Lydia’s story. In the scheme of that which is epilepsy, I realize that we are actually the lucky ones. No matter. It still sucks.

From last November.

photo by Michael Kolster

friday faves - lost love

Written by Martha Miller

My heart is beating
fast
scared.
Write about lost love
he says.
All I can think of
is Lisbeth
and how
I lost the little girl
she was
that day
in sparkling summer.
She'd been ill
and was feeling better
then awoke
that morning
saying
Mommy
I don't feel good.
I laid her on the couch
and gave her some Tylenol.
Twenty minutes later
It happened.
She was grey
eyes rolled back
the whites of her eyes now yellow, moist
a faint clicking in her throat
her body stiff
jittery
I yelled to Garry
to come.
Call 911
he said
and somehow
I did.
Waiting on the front steps
for the ambulance
the word epilepsy
playing
in my head.
The ambulance.
The men carrying her out.
Garry rode with her
I followed
in our car
praying
oh god
please
this is not
how I want to grow up
The ER.
Lisbeth
on the stretcher
they'd cut
her pink summer shorts
in half
tubes
down her throat
And Garry.
leaning over her tiny body
her shiny white blond body
her perfect pink six year old body
her blue eyes
shut.
What
(The Fuck)
was happening
wanting to turn and run away
Garry saw it in my face
and said
gently
c'mon Mart.
I walked to the cot
where she lay
and I
began
to sing to her.
I sang all the lullabies
I'd sung to her
when she was a baby.
I knew what my job was
now.
Years later I would dream that Lisbeth's head

was just an egg
an egg that I held in my hand.
The doctors came in and said
that they
could re-attach her head

to her body
but
I saw them look at each other
worriedly
doubtfully.
I saw them do that.
And all the king's horses and all the king's men
couldn't put Lisbeth together again.

drawing by Martha Miller

tirade

So, the kid has reflux, and I had a somewhat disheartening, half-hour telephone conversation with his gastroenterologist who is prescribing yet another drug for me to give to my nine-year-old son Calvin. The drug, Omeprazole, has a decently long list of side effects and appears to help only in the short term. The drug is known to interact with one of Calvin’s seizure meds—might amplify the anticonvulsant drug blood levels and thus the side effects of said medication—the drug, as a result, when discontinued could trigger withdrawal seizures.

I asked the doctor to call Calvin’s pediatric epileptologist to find out about the specifics of these possible drug interactions. I asked her to call a functional medicine specialist to see if an alternative treatment might work such as deglycyrrhizinated licorice, aloe, apple cider vinegar or perhaps even medical marijuana. I asked her, if we end up giving him the drug she prescribed, when he would take it since it likely can’t be given at the same time as his anticonvulsant medication and must be given on an empty stomach, which given those two directives might be difficult if not impossible to achieve. It seemed like her patience was wearing thin with my list of demands, and so I said to her quite firmly:

“If you don’t have a child like Calvin—and it doesn’t matter if you treat a hundred zillion kids just like him every day—you can never know what it’s like or what he has to go through with these drugs, which is why I have to advocate and ask so many questions because he can’t tell us anything.”

After that, she took a more conciliatory tone, tried to assuage my irritation, even reiterated what I’d said about being his advocate. But when I hung up the phone I knew that my tirade might not have sunk in, but maybe—just maybe—it will make a difference in his treatment. At the very least, as my husband always tells me, I can always hope.

photo by Michael Kolster

deb

Deb: Dedicated, Excellent. Bad-ass doc. Deb.

Deb is my son’s pediatrician. She’s been with him—with us—since Calvin was three weeks old, since we transferred from Maine Medical Center, where he was born, to our local hospital shortly after he was released from the neonatal intensive care unit. We took up residence in the labor and delivery ward for nearly four more weeks while Calvin practiced nursing.

Deb: Dogged. Encouraging. Brilliant. Deb.

Nearly every day while in the hospital, it seemed, Deb came to check on us in the morning. Usually, I had very low spirits having tried nursing Calvin with little luck since he was born six weeks early and having not yet developed the suck-swallow reflex. The nurses assigned to him would, every feeding time, weigh him on a sensitive gram scale before I nursed and then again, after, to determine how many grams of my milk he’d ingested. Then he’d get the remainder of his caloric requirement through a nasogastric tube attached to an inverted syringe full of my pumped breast milk. Deb was our cheerleader, and as such she coached us and assured us that Calvin would one day get it, would one day be going home. Without her I’d have fallen much earlier into the depths of despair because of my child that was failing to thrive. Without her I’d have had little hope.

Deb: Determined. Empathetic. Blue-ribbon. Deb.

But I did have hope because she gave it to me, and when Calvin was seven weeks old and barely six pounds, we brought him home. Since then Deb has made us feel as if Calvin is her only patient. I can’t quite wrap my head around the amount of time and effort she spends at work and then at home scouring stacks of books, medical journals and the Internet beefing up on my son’s conditions and afflictions and how to best treat them. She continually fields my copious emails, squeezes us in early for urgent appointments, speaks to us at length on the telephone long after her last patient has gone home, hugs us, at times cries with us, empathizes with us and has even made house calls on more than one occasion.

Deb: Down to earth. Extraordinary. Benevolent. Deb.

It’s difficult, if not impossible, to imagine what caring for Calvin would be like if it were not for Deb. She’s a rock. She’s Superwoman. She’s a caring individual and an indefatigable advocate for my son and my family. She’s the best pediatrician I can imagine, and though we don’t hang out together, I feel honored to call her my friend.

Deb. This one's for you.

photo by Michael Kolster

what i do

When my nine-year-old son Calvin’s bus arrives at the end of our driveway I sweep him off the steps, give him a kiss and set him on his feet. He usually has a smile on his face because home, it seems, is his favorite place to be, though school comes in close second. Sometimes we step inside and wash his hands then I read his daily summary sheet looking for the number and quality of any poops, searching for remarks on his balance and behavior and for what types of activities he engaged in while at school. At times, I hand him over to the nurse who sometimes fetches him from the bus herself, in which case I go back to my gardening or my writing or, on rare occasions, my cleaning.

What I don’t do, I see other parents doing with their children, and with a clenched heart I wonder if they are cognizant of how fortunate they are to be doing them. I don’t greet my son beaming with admiration at the way he describes how he made the paper mache sculpture in art. I don’t walk with him across town, kicking stones and acorns, to buy ice cream cones at the little red shack on Maine Street. I don’t send him off on his bike to the neighbor’s house to play. I don’t take him to swimming lessons where I watch intently from the side of the pool. I don’t take him to the store to pick out a new helmet or cleats or ball or bat or jersey or a spanking new pair of shoes. I don’t hear him recite his newest poem written in neat, round letters on wide-spaced ruled paper. I don’t head to the back yard to toss a ball that might just land in a mitt that devours his little arm practically up to its elbow. I don’t teach him cartwheels or somersaults or how to make a blade of grass sing between his thumbs. I don’t send him off to walk the dog or ask him to make himself a peanut butter and jelly sandwich or to go ask his father a question or to head upstairs to clean his room or do his homework.

What I do do, as on a day like yesterday, is to keep him out of his regrettably short day of summer school so we can drive nearly three hours to his neuro-ophthalmologist’s appointment in Boston where we sit and wait until the technician receives us then glues leads to his ears and on the back of his head as he whines and struggles to free himself from his father's restraint while he watches black and white checkerboards in various sizes dance across a screen in front of him so that the technician can record and decipher the activity of his visual cortex.

What I do do is then pace around behind him in the office for an hour waiting to get his glasses tested and his eyes dilated so that one of the Best Physicians in Boston can examine him, then I give him his lunchtime seizure medicine in a spoonful of yogurt and watch him drift off to sleep in his stroller with his eyes half open like he does when he is sick, like he does just before a seizure.

What I do do is watch him begin to jerk and twitch in that stroller and wonder if it’s a seizure and my muscles tense and I sit at the edge of my seat waiting to spring into action. But it isn’t a seizure, and some commotion wakes him up and his pupils are saucers and he stares at his snapping fingers and a soiled bib remains clipped at the back of his neck and he chews the harness we’ve strung across the stroller so that he won’t fall out and he grinds his teeth and we’re still waiting for the doctor to examine his eyes so we can get the hell out of there and drive three hours back to Maine arriving long after I’d usually be sweeping him off of the bus from school with a kiss.

photo by Michael Kolster

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