Wednesday, February 21, 2007
Battling Epilepsy, and Its Stigma - N.Y Times
Nora [who is 12 years old] has epilepsy, and as with 30 percent of those with the disorder, her seizures are not controlled by existing treatments.
She often has more than one seizure a day, mostly at night. Her seizures, called tonic-clonic (what used to be known as grand mal), cause her to lose consciousness for a full minute while her body convulses.
While some people feel an “aura” of symptoms before a seizure, Nora’s happen entirely without warning. When she seized at the top of a staircase in her home in Yardley, Pa., it was plain luck that her parents were at the bottom and caught her as she fell. Though she is on the brink of adolescence, she is rarely, if ever, left alone.
Fifty million people have epilepsy worldwide, and more than 2.7 million in the United States, half of them children. Especially in its intractable form, also called refractory epilepsy, the disorder — and the side effects of epilepsy medications — can cause problems in learning, memory and behavior, and indelibly alter development.
...
The critical struggle in Nora’s care, as for many children with epilepsy, has been to safeguard her cognitive life. Children with intractable epilepsy display a wide range of abilities, from normal functioning to profound retardation; Nora falls somewhere in the mid-high range. Her speech is extremely slow and very soft; she often frowns before answering a question, as if struggling to formulate her response. While her answers are usually accurate, her response time is very slow, and she sometimes is not aware that she has been asked a question at all.
...
In October 2002, Nora went on the ketogenic diet. It is like the Atkins diet in overdrive: it mandates vast quantities of fats — like oil, which Nora drinks from a small bottle — and almost no carbohydrates. Every morsel is weighed, and no deviations are allowed. Within weeks, Ms. Leitner says, they saw pronounced changes in Nora’s abilities and attention span. Over the next 21 months, she had only two seizures.
But in the summer and fall of 2004, there were three more, and that October, while swimming at school, Nora had a seizure and nearly drowned. Within a year, she had begun to have a seizure or two a month as she entered puberty. Last March she had a vagus nerve stimulator implanted, but her seizures became so frequent that by May the Leitners had the device turned off. Since then, she has often had more than one seizure a day. ...
Nora [who is 12 years old] has epilepsy, and as with 30 percent of those with the disorder, her seizures are not controlled by existing treatments.
She often has more than one seizure a day, mostly at night. Her seizures, called tonic-clonic (what used to be known as grand mal), cause her to lose consciousness for a full minute while her body convulses.
While some people feel an “aura” of symptoms before a seizure, Nora’s happen entirely without warning. When she seized at the top of a staircase in her home in Yardley, Pa., it was plain luck that her parents were at the bottom and caught her as she fell. Though she is on the brink of adolescence, she is rarely, if ever, left alone.
Fifty million people have epilepsy worldwide, and more than 2.7 million in the United States, half of them children. Especially in its intractable form, also called refractory epilepsy, the disorder — and the side effects of epilepsy medications — can cause problems in learning, memory and behavior, and indelibly alter development.
...
The critical struggle in Nora’s care, as for many children with epilepsy, has been to safeguard her cognitive life. Children with intractable epilepsy display a wide range of abilities, from normal functioning to profound retardation; Nora falls somewhere in the mid-high range. Her speech is extremely slow and very soft; she often frowns before answering a question, as if struggling to formulate her response. While her answers are usually accurate, her response time is very slow, and she sometimes is not aware that she has been asked a question at all.
...
In October 2002, Nora went on the ketogenic diet. It is like the Atkins diet in overdrive: it mandates vast quantities of fats — like oil, which Nora drinks from a small bottle — and almost no carbohydrates. Every morsel is weighed, and no deviations are allowed. Within weeks, Ms. Leitner says, they saw pronounced changes in Nora’s abilities and attention span. Over the next 21 months, she had only two seizures.
But in the summer and fall of 2004, there were three more, and that October, while swimming at school, Nora had a seizure and nearly drowned. Within a year, she had begun to have a seizure or two a month as she entered puberty. Last March she had a vagus nerve stimulator implanted, but her seizures became so frequent that by May the Leitners had the device turned off. Since then, she has often had more than one seizure a day. ...
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