Epilepsy Parent Quotes

I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of liquid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. the side effects--crippling headaches, dizziness, seizures, vomiting--lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s. "There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients of their parents. Bases on the number of patients listed in the pneumoencephalography studyand the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital including Elsie. The same is likely true of at lest on other study called "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy," which involved inserting metal probes into patients' brains.

You took a social problem--parents divorcing, mother a nymphomaniac, father drunk or gay (or both), brother on drugs, child crippled or bullied, a moron in the family, epilepsy, poverty (but only if you were stuck for a problem; poverty was too easy)--and you wrote about this Problem in stark, distressing terms. Then--this is the Rule--you gave it to the child with that problem to read. The child was supposed to delight in the insight and to see his own parents (or brother or disability) as a joyful challenge.

Keeping Hydrated The significant risk of kidney stones and dehydration on the Ketogenic diet (less-so with Modified Atkins Diet [MAD]) makes hydration an essential element to your child’s health. But getting your little warrior to drink around 30 to 40 ounces of water a day can be tough. Some children are natural drinkers, while other seem to completely lack interest. When it comes to hydrating your toddler, you might need to get clever. Here are a few tricks we picked up along the way.

There is no big drug company behind the Ketogenic diet and there probably can never be, unless somebody starts marketing sausage and eggs with cream sauce on it as a drug.

Then in March 1993, everything changed. My one-year-old son, Charlie, had his first seizure. There’s absolutely nothing funny about being the parent of a child with uncontrolled epilepsy. Nothing. After a year of daily seizures, drugs, and a brain surgery, I learned that the cure for Charlie’s epilepsy, the ketogenic diet—a high fat, no sugar, limited protein diet—had been hiding in plain sight for, by then, over seventy years. And despite the diet’s being well documented in medical texts, none of the half-dozen pediatric neurologists we had taken Charlie to see had mentioned a word about it. I found out on my own at a medical library. It was life altering—not just for Charlie and my family, but for tens of thousands like us. Turns out there are powerful forces at work within our health care system that don’t necessarily prioritize good health. For decades, physicians have barely been taught diet therapy or even nutrition in medical school. The pharmaceutical, medical device, and sugar industries make hundreds of billions every year on anti-epileptic drugs and processed foods—but not a nickel if we change what we eat. The cardiology community and American Heart Association demonize fat based on flawed science. Hospitals profit from tests and procedures, but again no money from diet therapy. There is a world epilepsy population of over sixty million people. Most of those people begin having their seizures as children, and only a minuscule percentage ever find out about ketogenic diet therapies. When I realized that 99 percent of what had happened to Charlie and my family was unnecessary, and that there were millions of families worldwide in the same situation, I needed to try to do something. Nancy and I began the Charlie Foundation (charliefoundation.org) in 1994 in order to facilitate research and get the word directly to those who would benefit. Among the high points were countless articles, a couple appearances of Charlie’s story on Dateline NBC, and a movie I produced and directed about another family whose child’s epilepsy had been cured by the ketogenic diet starring Meryl Streep titled First Do No Harm (1997). Today, of course, the diet permeates social media. When we started, there was one hospital in the world offering ketogenic diet therapy. Today, there are 250. Equally important, word about the efficacy of the ketogenic diet for epilepsy spread within the scientific community. In 1995, we hosted the first of many scientific global symposia focused on the diet. As research into its mechanisms and applications has spiked, incredibly the professional communities have found the same metabolic pathway that is triggered by the ketogenic diet to reduce seizures has also been found to benefit Alzheimer’s disease, ALS, severe psychiatric disorders, traumatic brain injury, and even some cancers. I

The Low Glycemic Index Treatment diet (LGIT) is a relatively new diet that was created by Dr. Elizabeth Thiele and dietitian Heidi Pfeifer at Massachusetts General Hospital about ten years ago. While it is still considered a high fat diet, it allows for greater freedom with 40 to 60 grams of carbohydrates, using only carbohydrates that are low on the glycemic index (GI) (<50). The GI is a measure of the effect of carbohydrates on blood sugar levels. The lower the number, the less the carbohydrate will alter your blood sugar level. When you hear the term “sugar rush,” that is often due to the rise of glucose in your bloodstream after consuming a sugar-rich food; foods that are high on the glycemic index raise the blood sugar levels in your body, and because all that goes up must come down, eventually the blood sugars will descend, causing the classic “crash” we’ve all felt hours

Emergency Management of Seizures in Children Epilepsy in children can be challenging to treat. As a parent, you must be worried about controlling the seizures in your children. According to Dr Monika Chhajed, MBBS, Fellowship Paediatric Neurology and Epilepsy, DCH, DNB, Consultant-Paediatric Neurologist, the annual incidence of epilepsy in children is reported as 10 to 73 episodes/100,000 children. It is the highest in children younger than 2 years of age. If your child is suffering from epilepsy, you must know the emergency management of seizures.