toxic heartache

As I begin writing this I am weeping—weeping for my child who I may have, in some sense, unwittingly poisoned with P5P, aka coenzymated vitamin B6.

Late last week, a nurse phoned to give me some results of a routine blood draw Calvin had done. He had given a total of seven or so vials of blood to test his thyroid function plus a customary metabolic panel, complete blood count, manganese, magnesium, copper, ferritin, D and B vitamins. Initial results came back normal with the exception of a low white blood cell count, indicating he might have a virus contributing to his recent spate of grand mal seizures.

Friday, however, she called back with some alarming results: Calvin's vitamin B6, a test which I'd requested for the first time and as somewhat of a fluke, was 144. Because the reference range for a child his age is a mere 3 to 35, the covering pediatrician suggested I immediately discontinue Calvin's B6 supplement. The nurse went on to inform me that vitamin B6 toxicity can result in things like flushing, tachycardia (rapid heart beat) and headache, all of which I've witnessed recurrently in Calvin.

For at least a year and a half I've been giving Calvin the B6 supplement, which was recommended to me by a functional medicine specialist, and signed off, reluctantly, by his pediatrician. The supplement, if I remember correctly, was meant to boost Calvin's immune system and perhaps to facilitate the production of GABA, which Calvin's brain is craving during his protracted benzodiazepine withdrawal. I was advised to initiate him on 50 milligrams per day, then at some point later I increased it to 100 milligrams daily when Calvin's seizures worsened. No one advised me to check his B6 blood level so, foolishly, I never had; I should have known better. Somehow, for whatever reason and perhaps subconsciously, this time I did.

After hanging up the phone, a million thoughts went through my head:

could his tachycardia and flushing be due to B6 rather than from seizures? could his tachycardia trigger seizures? could his tachycardia weaken his heart? has he had a persistent headache all these years due to B6 toxicity? are the symptoms i usually attribute to benzodiazepine withdrawal actually due to B6 toxicity? why didn't i research B6, its dose limits, its contraindications, its toxic side effects—like i have for years for all of his other meds—before giving it to Calvin? how could i be so reckless?

Just before writing this I went online to research B6 toxicity. I learned that Calvin's dose, according to his age, should be roughly one milligram per day; he was getting fifty to one-hundred times that for well over a year! I also learned that vitamin B6 toxicity can result in abnormal heart rhythms, decreased muscle tone, drowsiness or sedation, feeling of tingling on the skin, headache, heartburn, loss of appetite, nausea, rash, stomach discomfort or pain, sun sensitivity, and vomiting. 

I wondered if some of Calvin's finger snapping, and leg and arm rubbing are due to B6 toxicity. I went on to read that B6 toxicity can cause one to have muscle pain or trouble with walking, can interfere with one's proprioception, and can induce seizures. Is this why Calvin is stubborn and so often wants to drop down while walking? It can also interfere with the way that the body processes certain herbs and supplements which utilize the liver's cytochrome P450 enzyme system (e.g. cannabis, as does the benzodiazepine clobazam) and that, as a result, the levels of these may be altered in the blood or may alter the effects that they have on the body's P450 system. Having gained knowledge of cytochrome P450 during my research on cannabis over four years ago, had I investigated B6, I would have easily come across these factors—details that the functional medicine specialist and the pediatrician likely weren't aware of—and, with little doubt, I would have objected to giving the supplement to Calvin.

Since beginning this post, my tears have dried, having taken Calvin with me for a morning stroll through the garden. He was mostly compliant and seemed happy to be outdoors on this sunny morning, the birds chirping and flitting around us, roses and day lilies flaunting their brilliance. I sit here now wondering—hoping—that the discontinuation of Calvin's B6 supplement will result in the disappearance of any pain, tingling or weakness he's been suffering, and perhaps even result in the decrease of seizures. I also wonder how its absence will affect the levels of cannabis and benzodiazepine in his blood and how that might present in terms of seizure control, behavior and other side effects. It may prove impossible to know for certain.

My main fear and cause for great heartache, however, is that I've poisoned my child to the extent that the effects of B6 toxicity might be irreversible. He suffers so very much from one moment to the next and it pains me to think—in the absence of most of parenthood's joys that were spirited away two weeks before Calvin's birth along with much of the white matter in his brain—that the child I do have has been further damaged by the substances we've given him in some blind attempt to make things better.

Glimpse of a good moment: Calvin with Gma Kolster and Abby

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.

savannah's story

Written by Tracy Dixon Salazar, Savannah's mom

I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “Her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.

Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.

It has been devastating to watch what epilepsy has done to my child. With over 35,000 seizures in seventeen years, it has definitely left its mark. At twenty, Savannah is the developmental age of a five year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.

Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.

Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve chosen a career as a researcher.

During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.

Fifteen years later, I have a PhD in neurobiology and am an epilepsy researcher.

As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.

Update: About 18 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium-channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium-channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 18 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 15 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!

Savannah with her seizure-alert companion, Yukon

familiar oddities

He pranced and cooed and shrieked and flapped, all in a pair of colorful swimsuit trunks. Even in August, the river, the mouth of which mingles with the ocean, felt frigid. The boy dipped his toes into its clear green-blue as it lapped up onto the beach. The scene was delightfully odd to witness. “He must be about fifteen, right?” I’d said softly to Michael as we strolled down the shore, the boy receding behind us chirping and cackling, the beach stretching out in front and the sky painted in gossamer clouds.

The youth, who was dark blond, lanky and nearly as tall as I, was monkeying around like a toddler, excitedly racing back and forth between the water’s edge and his mother who was spreading out a towel on dry sand. I wanted to look back but I didn’t dare gawk. Seeing the teen made me imagine how Calvin might be at that age, made me wonder if in four or five years he’d be walking by himself, if he could play at the beach without eating sand and driftwood, without flopping onto the ground in a fit, without staring incessantly at the sun. I wished as much.

Michael and I ... we’ve developed radar of sorts, the kind that can spot developmentally disabled kids—kids I like to call extraordinary—from a mile away. There’s a warm, knowing feeling when we do, a comprehension that we’re not alone on our journey raising Calvin. “Did you see that kid?” I find myself asking when we exit the grocer or cross the street or enter a diner, and we smile at each other, at our glimpse of familiar oddities, but also in solidarity of the heartache, the burden, the ridiculous joy, the suffering, the marginalization of it all.

And the parents of these boys and girls, ones with Autism or Angelman’s syndrome or Down syndrome or Rett’s syndrome, these kids with epilepsy who, because of their seizures, have lost their opportunity to live a normal drug-free life, are doing it. They're doing it happily and are seemingly well adjusted. But they’re not doing it alone, and hopefully they're cognizant of that and have others who they can lean on when the going gets rough, like we do.

We continued down the beach and back watching child-free couples walking hand in hand and teens playing beach Ping-Pong and girls with tattooed shoulders sunning themselves with their dogs and dogs peeing on sandcastles and sandcastles melting into the surf. And I thought of Calvin at home with his nurse splashing in his tiny inflatable swimming pool, having his diapers changed and his pills spoon-fed and his body bathed and his tumbles intercepted and his little neck hugged and somehow, without him there, I felt all alone.

what if

What if religion was each other?
If our practice was our life?
If prayer was our words?

What if the temple was the earth?
If forests were our church?
If holy water—the rivers, lakes and oceans?
What if meditation was our relationships?
If the teacher was life?
If wisdom was self knowledge?
If love was the center of our being

—Ganga White, founder of the White Lotus Foundation

photo by Michael Kolster

the sight of the stars

For my part I know nothing with any certainty, but the sight of the stars makes me dream.

—Vincent Van Gogh

Vincent Van Gogh - The Starry Night [1888]

the wisdom i see in leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

Read the entire preface here.

photo by Michael Kolster

lives matter

The idea that some lives matter less is the root of all that's wrong with the world.

―Tracy Kidder, from Mountains beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World

Depression era girl, Photographer unknown

things i love and not so much

things i love ...

milk. rudy the dog. altruism. home. the right to vote. pumpkin bisque. fall colors. seizure free days. mom. inclusiveness. blog stats. homemade nachos. expletives. happy boy. rain. diversity. men who like quiche. farce. separation of church and state. travel. blue jeans. dragon moms. captain crunch. gray hair. this gorgeous expanding universe. snaggletooths. frosty’s donuts. equality. hubby. gun control. beaches in october. progress. crying and laughing at the same time. a good book. suzuki boulevard s40. movies. five o’clock shadow. wisdom. fried chicken. public broadcasting. writing. moon and stars. good humor. people that are different from me. honesty. shit kickin’ boots. leftover halloween candy. the pres.

not so much ...

celery and green peppers. deceit. snoring. socks that don’t stay up. suppression. drivers who don’t let others merge. jello salad. bigotry. epilepsy. blind ignorance. the skin on warm milk. bullies. radicalism. belly roll. vacuuming. chin hairs. homogeny. that gross brown scandinavian whey cheese. police brutality. raking leaves. idle hands. television. convention. loud noises. hoarding. sick boy. antiepileptic drugs and their side effects. hate. US incarceration rates and demographics. tripe. tax evaders. sleepless nights. supreme court citizen’s united decision. no more ice cream. lilee’s public house gone. forgetting history. ugly americans. people i can’t trust.

photo by Michael Kolster

kindness and acceptance

Mary strapped him into his green machine and he motored off toward the door as if he knew where he was headed ... because he did. The three of us walked from his “functional skills” class down the long shiny hallway to his mainstream homeroom, Calvin’s acid-green gait trainer wheeling along under his command allowing him to be mostly independent. He went straight there. The second-graders were seated on the rug facing their teacher when we entered. A few of the children turned and said, “Hi Calvin!” The teacher gave up her chair for me, a purple one with sparkly paint, the color that stands for epilepsy awareness, I thought.

I sat and told the children a little bit about Calvin, about how he’d been born six weeks early and that his brain hadn’t formed the way their brains had. The children sat quietly, some cross-legged, others kneeling, all with sober, attentive faces. I went on to explain that Calvin's brain has roadblocks that make learning things difficult for him. Calvin sat at the back edge of the group squirming in Mary’s lap and giving her hugs, but he remained quiet as I spoke and I wondered if he knew it was his mama talking to the group. “Calvin has epilepsy,” I added, “Do any of you know what epilepsy is?” There was no show of hands, so I described how seizures are like thunderstorms that cause the lights to flicker and sometimes go out in Calvin’s brain making it even harder for him to learn. Then I opened the floor for questions about my boy.

“Will Calvin ever talk?” A pretty brunette girl asked.
“I’m not sure,” and I applauded her for her good question.
“When Calvin was born did he come out talking regular?” a cute boy in the back tagged on.
“No," I answered, "but when Calvin was a year and a half, before he got epilepsy, he said ‘Mama’ once."

Then I mentioned the seizure drugs. I explained how they make Calvin's development even slower and cause him to be dizzy and sleepy and limit his ability to walk without falling. “What do seizures look like?” another boy asked, and I did my best to simulate drop seizures and absence seizures and tonic-clonic seizures. “Those are the kind that Calvin has,” I told them. And then came the questions I found difficult to answer:

“Can people die from epilepsy?” asked the little brunette at my feet in a clear voice.
“Well, yes they can, if a seizure doesn’t stop,” I answered, purposefully avoiding the mention of the drownings, the suffocations, the fatal head injuries and the burns that seizures can cause.
“What kinds of toys does Calvin like to play with?” asked a bright, blond-haired kid in the front.
“He likes toys that rattle and light up and make music and sounds,” painfully aware of my wish to say that he liked Legos and bicycles and puzzles.

The children remained solemn, but I felt like I got through to them, their pure minds like blank chalk boards eager for beauty and love and thoughtfulness to be scrawled all over them. I was glad to see some of Calvin’s classmates from last year seated in the group; their faces told me he’d have some friends. And though they might not play with him the way kids do—four square, cards, tag, catch—they’d show him kindness and acceptance, which is all I can really hope for at this point. But kindness and acceptance go a long way in my book ... a really, really long way.

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

knowledge and wisdom

Knowledge is learning something every day.
Wisdom is letting go of something every day.

—Zen proverb 

photo by Michael Kolster