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

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