keto kid – part two

Continued from yesterday

After Calvin's three-day initiation to the Ketogenic diet at Mass General Hospital we headed back to Maine equipped with a gram scale, a glossy white three-ring binder complete with a "no carbohydrate" cheat sheet, a list of specific allowable food brands and a dozen pre-calculated menus plus prescriptions for two additional medicines required to prevent some undesirable side effects of the diet.

Some who I told about the diet responded by saying “I wish I could go on a high fat diet!” They changed their minds when I informed them that Calvin wasn’t eating potato chips and ice cream but rather copious amounts of mayonnaise, oils, heavy cream, no sugar, little protein and negligible carbohydrates.

Although Calvin adhered to the rigorous diet, he never enjoyed a decrease in seizures, as do two-thirds of kids who try it. He did, however, become far less irritable. Prior to starting the diet Calvin cried a lot. Every morning he’d cry for an hour and a half. He was so miserable we had no choice but to hold him—which only slightly dampened his anguish—while wondering what wretchedness was plaguing him. The one calming solution was to swaddle him in a blanket, Michael and I holding the ends like a makeshift hammock, and swing him back and forth. As soon as we stopped, however, his misery returned, so we held him and rocked him most of the morning—nearly every morning. The same was true upon waking from his naps.

Years of his reliable and incessant crying was emotionally punishing, carving deep gashes into my already eroding psyche. I dreaded it and it hurt me to see him so upset, not knowing why nor what to do beyond bringing him to a number of different specialists in hopes of unlocking the mystery. At the same time I optimistically wished it away, but the crying became more burdensome to me, in its woeful relentlessness, than his seizures. The Ketogenic diet changed all that, and then some.

In tandem with Calvin's decreased irritability came apathy, lethargy and stupor. Calvin’s new found skills, crawling up the stairs, getting into standing from the middle of the floor and exploring the house, mostly vanished as his core strength withered and reduced him to the likes of an expressionless rag doll—except when he had his seizures.

Eventually, after three months on the diet, we tested Calvin’s blood. Although his antiepileptic drug doses had not changed, the levels in his blood had surged; he was metabolizing the meds differently and hence, his torpor. To counter this listlessness his neurologist suggested reducing one of his antiepileptic drugs, Clonazepam, a relative of Valium. We did. His seizures doubled. I got cold feet. We went back up.

Over the course of the next fifteen months we tried to fine tune Calvin’s meals and meds, still hoping for some miracle. After months of no improvement I put some hard questions to his neurologist and together we fashioned a plan of action to break through Calvin’s plateau in development. We knew we had to get him completely off of the Clonazepam and weather the inevitable withdrawal seizures along the way. What we didn’t expect, however, was for Calvin to stop tolerating the diet and plunge into a downward spiral.

To be continued

Calvin's meds 2008

keto kid - part one

The only thing that might begin to resemble a cure for epilepsy is the Ketogenic diet. It’s unfortunate that the diet works only for a smattering of people, usually children, but at least it can work, though many conservative neurologists remain skeptics.

Soon after Calvin's diagnosis and while researching the diet (his local neurologist never mentioned it) I learned it had better efficacy when begun early in the treatment of seizure disorders. So, in March of 2008, when Calvin was four, we checked him into Massachusetts General Hospital for the three-day initiation.

We were hoping, as do all parents who put their kids on the diet, that Calvin would be one of the lucky few—the five to fifteen percent, or so, of children who try it—whose seizures would stop within a matter of days after starting the treatment.

We first had to fast Calvin for twenty-four hours to put him into ketosis—the state in which, for three thousand years, seizures have been known to stop. In the hospital they monitored his heart rate, oxygen saturation and respiration. His blood and urine were screened for ketone bodies, or ketones. The diet mimics fasting or starvation by increasing fat and severely limiting the amount of carbohydrates ingested. The liver converts the fat into fatty acids and ketones which pass into the brain and replace glucose as an energy source. An elevated level of ketones in the blood can lead to a reduction in the frequency of epileptic seizures, though it is not yet known whether it is the ketones themselves, or some other coexisting mechanism responsible for the effect.

Calvin’s first meal in the hospital consisted of egg, mayonnaise, cheese, heavy cream and melon. It didn’t sound too bad until we weighed it out on the sensitive gram scale, to the tenth of a gram. The boiled egg–yolk and white weighed separately and just enough to fill a tablespoon—were mixed with a similarly sized dollop of mayonnaise, and a small slice of cheese on the side. The diminutive portion of cantaloupe, about the size of a grape, shocked me. Calvin had to drink the heavy cream.

Dolefully, I contemplated the meal which was minuscule due to the high fat accounting for most of the calories. I worried that Calvin, who had always had various difficulties with eating, would refuse this strange new menu. I felt badly that he could no longer enjoy his favorite crispy graham crackers, orange cheese puffs and an unlimited supply of crunchy sweet grapes. After all, there were so few things Calvin really got to enjoy in life.

But, being the superkid that Calvin is, he choked it all down—every required morsel—and every bit of fat scraped up with a spatula. That night he got sick twice, but overall the initiation went smoothly and on the third day we were released from the hospital to try it ourselves at home.

To be continued

drugs suck

Ugh. Or rather “insert F-bomb here" to quote a clever friend of mine. I just nervously and reluctantly gave Calvin his new seizure medicine. His other one has seemed to have maxed out its effectiveness. This one, his eighth trial, is salmon colored and oval with a score mark indicating where to cut it in half, which I did, revealing the mysterious chalky white substance that comprises all seizure drugs I have thus encountered. Drugs suck, but they are a necessary evil when it comes to epilepsy.

Prior to burying the half-pill into Calvin’s yogurt I had read up on this new drug to preempt any surprises and to ensure he was getting the correct initial dose. The first seizure med that was prescribed for Calvin was accidentally double-dosed by the hospital’s covering neurologist and Calvin went ballistic. We caught the error immediately and, without admitting fault, the doc cut his dose in half.

The side effects we need to look out for this time are no different, really, than all the other drugs: somnolence, vomiting, headache, fatigue, dizziness, nausea, decreased appetite, rash, ataxia, diplopia, psychomotor hyperactiviy, abdominal pain, aggression, etcetera, etcetera.

Poor kid. He has to deal with so much and now this. We just spent the last eighteen months reducing his seizure meds from four down to one and now we have to add another because the damn seizures keep rearing their frigging heads. Would some brilliant researcher please find a cure? We needed it yesterday. Insert F-bomb here.

can-do kid

My boy Calvin will be seven next month, though you’d never know it. He is small for his age and needs great help—often complete assistance—doing things you’d expect from an infant or toddler. However, there are some things Calvin can do, and we are so very proud of these accomplishments which he’s worked so hard for.

Calvin can crawl on his hands and knees, though slowly and awkwardly. While we spot him he can creep up the stairs virtually by himself and can scoot downstairs on his bum. Calvin can stand up in the middle of the floor and walk, but we remain by his side to catch him if he stumbles. Calvin can bend down to pick up a toy and he can finally go from standing to sitting on the floor by himself. His balance is improving so he is able to stand up in one place by himself for longer periods of time.

Calvin can bring a spoon, pre-loaded with food, up to and into his mouth. He can pick up and eat small morsels such as dry roasted peanuts and blueberries. He can drink from a sippy-cup, though he drops it on the ground when he is done. And if we start them first, he can turn the pages of a book.

When dressing, Calvin can pull his shirt down over his head. Once we help him find the armholes he can push his hands through the sleeves. Calvin has just learned how to pull off his loosened shoes, I help him with his orthotics, and then he can pull off his socks. He can put his arms up when we take off his shirt and is beginning to learn, once his arms are out, how to push his shirt off of his head. Just this last week Calvin started stepping into the bath by himself, though his balance is precarious so we always have a hand on him.

Another new skill of Calvin’s is, if a door is ajar, pulling the knob toward himself while stepping back out of the way then walking through the entrance. We are working on grasping doorknobs firmly enough to turn them and we are teaching him to flip the wall light switches on and off.

There are still millions of things that Calvin can’t do but I prefer to focus on my cute can-do kid.

loss

I think about losing Calvin a lot—probably every day. The intractable epilepsy makes the possibility of sudden death much more likely. And while the thought is not a very nice one it also serves to remind me to cherish my time with Calvin and to appreciate all of the wonderful ways he continues to enrich my life. Because of Calvin I often think more deeply about the loss that others suffer.

For years, some dear friends of ours yearned to have a child. The couple tried everything to get pregnant but met only with repeated disappointment. Finally, they turned to the world of foster care and one special day they brought home a beautiful baby girl, just days old, whose biological mother could not care for her. The joyous couple loved the new addition to their family. They delighted in feeding her, clothing her and doting on her for eight glorious months. As a result she was a very happy child who returned her parents' love in abundance; it was clear in the way she was gleefully mesmerized by them. But then one day, what had felt like some magnificent dream, in a millisecond became their worst torment; some blood relatives of the child, who had previously declined taking her in, changed their minds. The state swooped in and snatched the baby from their arms—the only mother and father the child had ever known—and drove off, depriving her of ever again seeing their smiling faces, hearing their soothing voices or feeling their loving embraces.

Still, I am moved to tears when I see photographs of the three of them together. I can never fully know their pain, nor the child's trauma, but I feel the stab of their sorrow. I know loss. It has weighed so heavily on me at times it has been difficult to breath. It has strangled my heart. But the loss of a child, I believe, is immeasurable and in no way can it be imagined.

Life can be unpredictable. It can turn upside down in a split second and become something utterly unrecognizable. It is impossible to equip oneself for this kind of tragedy and suffering. The only thing to do is to persevere, to love as much as possible from day to day and to appreciate all of the wonderful things that life has to offer, especially in case they disappear.

holding out hope

As each new year begins I hope it will be the year that Calvin outgrows his seizure disorder. But as the months flick by it feels less and less likely that that will be the case.

In February Calvin will turn seven followed by March, the unceremonious and infamous fifth anniversary of his epilepsy diagnosis. Due to the epilepsy alone, by then, he will have tried at least eight anticonvulsant drugs, at times as many as four at once. He will have been on two unsavory highly restrictive diets. He will have tolerated a half dozen 24 – 72 hour electroencephalograms and his second MRI. He will have endured a legion of painful blood draws, some successful, some not. And all of this Calvin must withstand because of epilepsy—because of hundreds of seizures that just won’t stop coming.

Certainly, the first few years since his diagnosis were the hardest to take. We began witnessing our child suffer frightening seizures during most of which he’d stop breathing and start to turn blue. At all hours of the day and night we called 911 because of status epilepticus, a serious, sometimes fatal seizure activity. Scores of times we spent weary hours in glaring, austere emergency rooms and were often transferred in dark ambulances, chains jangling eerily from their underbelly, to the pediatric intensive care unit thirty-five miles away from our home. At least three times we were faced with the dread that we might lose Calvin to a prolonged seizure, his body and brain being battered with convulsions. And, insidiously, we have had to subject Calvin to strong anticonvulsant medications that at times send him into mania and at others into oblivion, no doubt having stunted his development along the way.

Nevertheless, somehow I still hold out hope that he will outgrow this brutal fiend, though his chances are slim and getting slimmer. Perhaps we will find a silver bullet—a medication that will once and for all halt the throng of seizures that march reliably and repugnantly through his brain. More than anything, however, I hold out hope for a cure—a way for my Calvin to enjoy seizure freedom and liberation from the heinous side effects he must cope with—instead of wearing the unreliable bandage that is medicine, which is superficial at best and keeps coming off.

Our only hope for a cure for Calvin, and for millions of others afflicted by epilepsy, is through heightened awareness. So, with the advent of this new year please share Calvin's story with others. It's not hard, just do it one story at a time.

not-so-good day

from november 2007

i am having a not-so-good day so far. i ran into an acquaintance who i have hoped would become a new friend. she has three beautiful, healthy tow-heads that are very young. she told me she heard calvin had had a seizure the night we were supposed to have ice cream with our mutual friend. i said yes, it was true, and that it happened a lot, and then i started to break down in the grocery store parking lot and had to excuse myself. i wonder if this sadness will ever dissipate. i know swimming should help but i am still afraid swimming will make me sad and cry like it has every time i get into the pool—remembering swimming while i was pregnant. i am tired and grouchy and anxious and miserable a lot of the time. i'm not going to take medication because i feel like i need to feel these feelings for calvin. i believe if i don't feel them then i won't really know how hard this all is, and i think i need to know that. i don't want to be numb to the situation. i want to go deep then come out on the other side.

 

photo by Michael Kolster