My friend Susan’s only daughter, Lauren, started having seizures out of the blue when she was just seven months old. She awoke to find her infant blue and limp in her crib. She soon learned that her baby had had a night filled with seizures. Over the course of the next eighteen years Lauren’s seizures continued despite trying twenty anticonvulsant drugs, two unsuccessful brain procedures and dietary therapies. Susan, wrought with despair, writes:
Lauren would suffer over 25 seizures a day, waking up in between only long enough to feel another seizure coming on and scream out in terror “Mommy, make them stop” and I couldn’t do a thing…
Today, Lauren is thirty, and because of years of uncontrolled seizures and drug side effects that have damaged her developing brain she must reside in a supportive arrangement since she cannot live independently. She’s a natural beauty, like her mother, with the innocence and manner of a child.
I’ve often wondered if the pain and grief is worse when a parent’s healthy child is later robbed of that well-being. I can never know the answer to that question since we became aware of Calvin’s significant neurological deficits—though not the looming epilepsy—two weeks before he was born. Though we’d hoped he’d be, our child wasn’t born healthy. But even so I’ve still felt the loss of who Calvin might have become if not for the barrage of seizures and scores of drugs meant to stop them.
I remember watching a Frontline episode called The Medicated Child, which focused on bipolar disorder in children. One of the kids featured in the documentary had been prescribed a drug for attention deficit hyperactivity disorder (ADHD), after a teacher’s recommendation, when he was just four years old. The drug Ritalin (Methylphenidate, similar to speed and cocaine but having a paradoxical effect on children not dissimilar to the hyperactivity Calvin experiences from the Valium-like anticonvulsant drug he takes) made little Jacob anxious. So, his doctor prescribed an anti-anxiety medication that seemed to cause compulsive behavior or nervous ticks, for which a third drug was prescribed. At the age of nine Jacob was diagnosed with a mood disorder. The doctors tried drug after drug; stimulants, antidepressants, antipsychotics. By the time Jacob was ten he had been given eight different medications. Never was a therapeutic method suggested as a possible solution to Jacob’s challenges, and the poor kid became a mess of writhing ticks.
Unfortunately, epilepsy is not a disorder that can be treated with psychotherapy. Calvin, who is turning eight next month, has tried nine different anti-epileptic drugs, as many as four at once. He walks like a drunken sailor, spazzes out and shakes his head back and forth like Linda Blair does in The Exorcist. He throws his hands over his ears for no apparent reason and at the most inopportune times, such as when he is headed straight for a door jam. He pokes his eyes, grinds his teeth and knocks his knees. I used to find fine clumps of hair on his pillow each morning. And the saddest thing is that, despite all the drugs, he continues to suffer the seizures.
I try to resign myself to the idea that I’ll never know who my kid might have been without having had hundreds of seizures, his brain constantly soaked in powerful sedative drugs. After all, none of us knows what our kids would be like if not for the curveballs that life throws them—that we throw them. But I do know that this goofy, kooky, hyper, silly, adorable kid is who he is and I love him all the more. I have to. Still, you can bet I’ll keep searching high and low for a cure for his epilepsy.
Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. As my mother always used to say, “it's good for what ails you.”
Lauren would suffer over 25 seizures a day, waking up in between only long enough to feel another seizure coming on and scream out in terror “Mommy, make them stop” and I couldn’t do a thing…
Today, Lauren is thirty, and because of years of uncontrolled seizures and drug side effects that have damaged her developing brain she must reside in a supportive arrangement since she cannot live independently. She’s a natural beauty, like her mother, with the innocence and manner of a child.
I’ve often wondered if the pain and grief is worse when a parent’s healthy child is later robbed of that well-being. I can never know the answer to that question since we became aware of Calvin’s significant neurological deficits—though not the looming epilepsy—two weeks before he was born. Though we’d hoped he’d be, our child wasn’t born healthy. But even so I’ve still felt the loss of who Calvin might have become if not for the barrage of seizures and scores of drugs meant to stop them.
I remember watching a Frontline episode called The Medicated Child, which focused on bipolar disorder in children. One of the kids featured in the documentary had been prescribed a drug for attention deficit hyperactivity disorder (ADHD), after a teacher’s recommendation, when he was just four years old. The drug Ritalin (Methylphenidate, similar to speed and cocaine but having a paradoxical effect on children not dissimilar to the hyperactivity Calvin experiences from the Valium-like anticonvulsant drug he takes) made little Jacob anxious. So, his doctor prescribed an anti-anxiety medication that seemed to cause compulsive behavior or nervous ticks, for which a third drug was prescribed. At the age of nine Jacob was diagnosed with a mood disorder. The doctors tried drug after drug; stimulants, antidepressants, antipsychotics. By the time Jacob was ten he had been given eight different medications. Never was a therapeutic method suggested as a possible solution to Jacob’s challenges, and the poor kid became a mess of writhing ticks.
Unfortunately, epilepsy is not a disorder that can be treated with psychotherapy. Calvin, who is turning eight next month, has tried nine different anti-epileptic drugs, as many as four at once. He walks like a drunken sailor, spazzes out and shakes his head back and forth like Linda Blair does in The Exorcist. He throws his hands over his ears for no apparent reason and at the most inopportune times, such as when he is headed straight for a door jam. He pokes his eyes, grinds his teeth and knocks his knees. I used to find fine clumps of hair on his pillow each morning. And the saddest thing is that, despite all the drugs, he continues to suffer the seizures.
I try to resign myself to the idea that I’ll never know who my kid might have been without having had hundreds of seizures, his brain constantly soaked in powerful sedative drugs. After all, none of us knows what our kids would be like if not for the curveballs that life throws them—that we throw them. But I do know that this goofy, kooky, hyper, silly, adorable kid is who he is and I love him all the more. I have to. Still, you can bet I’ll keep searching high and low for a cure for his epilepsy.
Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. As my mother always used to say, “it's good for what ails you.”
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| To watch the entire FRONTLINE episode, The Medicated Child, click here |
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