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Friday, 14 September 2012 07:45

Fall 2012 Edition

KetoNews Fall 2012 Edition

This month: The 3rd international Symposium, Will Meryl Streep be at the Gala Event, September 21s? Scott’s Story, Written by Fay LaFrage, Scott’s Mom. The Keto Recipe of the Month: Spinach Bites, created by Dawn Marie Martenz. And Introducing Charlie Foundation Approved Recipe Logos.

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Friday, 06 July 2012 12:44

Summer 2012 edition

This month: The 3rd international Symposium, Consecutive conferences for families and professionals near Chicago. Our featured Keto Kid Story: A Shot In The Dark, by Tim and Christine Emerson. The Keto Recipe of the Month: Kale Chips, created by Dawn Marie Martenz.

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The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet

The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet

The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet.  Written by Dawn Marie Martenz and Laura Cramp. Published by Demos, 2011. http://www.barnesandnoble.com/w/keto-cookbook-dawn-marie-martenz/1101003033?ean=9781936303236

Honest Medicine

Honest Medicine

Honest Medicine  Written by Juia Schopick. Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. Published by Innovative  Health Publishing, 2010.

USA Today reports a ‘miracle’ diet to treat children with epilepsy– 1/1999

Recognizing a 'miracle' The high-fat ketogenic diet can ease seizures in epileptic children

USA Today; Arlington; Jan 12, 1999; Kathleen Fackelmann;

Abstract:

In desperation, they turned to the ketogenic diet, a controversial regimen that involves feeding children huge amounts of fat. The diet is thought to help some children by inducing a seizure-calming condition called ketosis. Ketosis occurs when the body is forced to burn fat instead of sugar.

Within 72 hours of starting the diet, Charlie (Abrahams) was seizure-free. "We felt as though we had had a miracle," recalls Abrahams, who in 1994 started the Charlie Foundation to Cure Pediatric Epilepsy.

While Abrahams' other films such as Airplane! gave fans a laugh a minute, First Do No Harm fueled a grass-roots effort for more research on the diet, says John Freeman, the neurologist at the Johns Hopkins Medical Institutions in Baltimore who treated Charlie.

Full Text:

You know you've produced a hit TV movie or series when it develops its own spin-off -- another show that sustains the impact of its original.

For writer/director Jim Abrahams, the most significant spin-off from his 1997 TV movie, First Do No Harm, had nothing to do with entertainment but a lot to do with the health of his epileptic son and thousands more like him.
The movie, starring Meryl Streep, captured a Chicago family's struggle to conquer the seizures racking their son's body.

Abrahams was uniquely qualified to write and direct the movie. He and his wife, Nancy, would never forget their own fight to help son Charlie when standard epileptic drugs and even brain surgery could not halt the brainstorms that seized his small body.

In desperation, they turned to the ketogenic diet, a controversial regimen that involves feeding children huge amounts of fat. The diet is thought to help some children by inducing a seizure-calming condition called ketosis. Ketosis occurs when the body is forced to burn fat instead of sugar.

The diet can be risky. But it can represent the only hope for children who don't respond to standard treatment.
Within 72 hours of starting the diet, Charlie was seizure-free. "We felt as though we had had a miracle," recalls Abrahams, who in 1994 started the Charlie Foundation to Cure Pediatric Epilepsy.

While Abrahams' other films such as Airplane! gave fans a laugh a minute, First Do No Harm fueled a grass-roots effort for more research on the diet, says John Freeman, the neurologist at the Johns Hopkins Medical Institutions in Baltimore who treated Charlie.

That groundswell is paying off. In December, Freeman and colleagues published the largest, most definitive study to date of the ketogenic diet.

The findings, reported in Pediatrics, confirm research that suggested the diet does control seizures in some children. Two additional new studies highlight a naturally produced substance that may underlie the diet's success.
Neurologists, who even a few years ago had viewed the diet with extreme skepticism, are now acknowledging its value. "There's recognition now," says Harvard neurologist Steven Schachter. "This form of therapy does have a role to play" in treating some cases of pediatric epilepsy, he says.

About 350,000 children and teen-agers suffer from epilepsy, a disorder with a variety of causes that leads to a disturbance in the brain's electrical activity. Doctors can harness seizures 80% of the time with drugs. But for the others, drugs simply don't work.

Doctors said Charlie's seizures would ultimately damage his brain, leading to mental retardation. "You feel your child has been given a fate worse than death," Jim Abrahams says. That frustration led the Abrahamses on a search that brought them to Freeman, who used the diet to treat a handful of children each year.

Because no rigorous scientific study of the ketogenic diet had been done, most neurologists discounted it as unproved and potentially unsafe. Indeed, the Abrahamses had taken Charlie to top pediatric neurologists in the USA. Not one mentioned it as an option.
The new research has given the ketogenic diet the credibility it had long been lacking. In the Pediatrics study, Freeman and his colleagues examined 150 children ages 1 to 16 who continued to have seizures despite treatment with at least two anticonvulsant drugs.

Doctors first hospitalized the children for five days, then gradually weaned them off their usual diet and put them on the ketogenic diet.

Kids on the regimen eat a high-fat, low-protein, low-carbohydrate diet.

Meals typically include small amounts of fish, meat, poultry, fruits and vegetables and lots of added fat, usually in the form of butter, oil or heavy cream.

The diet provides a whopping 90% of total calories from fat, says Jane McGrogan, a nutritionist at the Hopkins program. The average American diet gets between 30% and 40% of its calories from fat.

Kids love the cream but generally don't like the limits on sugar and carbohydrates. They must avoid pastries, sugary soda pop, potato chips and pretzels, McGrogan says.

Ten-year-old Timothy Finnigan of Satsuma, Ala., says the diet can be tough to follow. "It's hard when you look at what everyone else is eating," says the fifth-grader, who brings his lunch to school.

The diet also puts demands on parents, who must weigh foods and keep strict tabs on calories. Most parents find they must prepare meals without the help of processed foods, which can contain hidden carbohydrates, McGrogan says.

Still, the Hopkins team found that most parents and their children successfully followed the diet. The researchers found that 55% of children who started the diet stayed on it for a year. Nearly all of those children had fewer seizures on the diet, with 27% getting almost complete relief.

"These are the most desperate cases," Freeman says. "Even in those we get a spectacular success rate."
Children who stopped the diet usually did so because it wasn't working, Freeman says.

Freeman thinks the diet shouldn't just be a last resort but ought to be considered earlier. That may happen as doctors learn of a new study by Charles Niesen of the University of Southern California in Los Angeles. His findings show that a naturally produced substance called beta-hydroxybutyrate (BHB) may explain how the ketogenic diet works.
Niesen and researcher Sara Lustig designed a rat study to test BHB, one of a group of substances called ketones manufactured by the liver during the ketogenic diet. The diet forces the body to burn fat instead of sugar, producing BHB and other ketones during that process.

The researchers found BHB could block seizures in the rats. "We actually prevented seizures in 50% of the animals," Niesen says. The team presented results in December at the American Epilepsy Society's annual meeting in San Diego.
Niesen's research suggests that BHB calms the brain's electrical disturbance by activating certain protein receptors on brain cells. That raises hope that BHB in drug form will stop such brainstorms.

If Niesen gets Food and Drug Administration approval, he could launch a study of BHB in children as early as this spring. "I'm eager to get the kids started," he says.

Meanwhile, another study presented at the December meeting indicates that doctors can fine-tune the ketogenic diet to produce the most beneficial levels of BHB in the blood.

Lawrence Brown, Claire Chee and their colleagues at the Children's Hospital in Philadelphia developed a device to keep track of BHB in the blood of 12 epileptic children who were on the ketogenic diet. When eight of the 12 suddenly started having more seizures, the team found the level of BHB in the blood had dropped. The researchers adjusted each child's diet to boost BHB, bringing seizures under control within 12 hours, Brown says.

Just as a diabetic keeps track of insulin, children with epilepsy one day may be able to check their BHB levels at home to make sure the diet is working properly, Brown says.

Although parents might be tempted to view the diet as a natural approach to the treatment of epilepsy, researchers warn that the diet is harsh.

"You're using the diet as a drug," says Philip Sheridan, an epilepsy expert at the National Institutes of Health in Bethesda, Md. Parents who want to consider the ketogenic diet should carefully weigh the risks, he says.

According to Sheridan, those include kidney stones, immune system abnormalities, low blood sugar and clogged arteries. Sheridan worries that the high-fat diet may set the stage for a heart attack later in life.

Many children can be weaned off the ketogenic diet within a few years, Freeman says. Some go off the diet and remain seizure-free, he says.

Yet some children, like Charlie Abrahams, must stay on the diet or the seizures return. No one really knows the effects of maintaining a child on such a diet for years or even decades, Sheridan says.

He worries that such children may be vulnerable to growth retardation. Freeman, Sheridan and other experts advise parents to go on the diet only with the appropriate medical and nutritional help. Parents who have tried this diet on their own have had tragic results, Freeman says; several children have died as a result of an unsupervised ketogenic diets. The risks of an unsupervised diet include malnutrition, vitamin deficiencies and chemical imbalances.

At Johns Hopkins, the staff monitors children closely to make sure they're well-nourished and growing properly.
For Charlie, and many children like him, the future appears considerably brighter today than it did five years ago. In 1993, the Hopkins program was one of only a few that parents could turn to for the ketogenic diet. Now, many major medical centers offer it.

And research on the diet has exploded. The 1993 Epilepsy Society's meeting had no papers on the ketogenic diet, Freeman says. This year, 23 researchers presented findings.

The new era "provides hope for my family and lots of other families," Abrahams says.

Read more...

People Magazine - "Recipe for hope" – 1994

The disease, says Abrahams, was causing the “slow disintegration of Charlie (in ’92)

“You have to go with hope, “says Abrahams (at home in Santa Monica with Charlie).

Babies, Nancy Abrahams well knows, are inexplicable creatures, one minute engaging you in a round of peek-a-boo, the next minute lost in some deep trance. So when her son Charlie went limp in her arms a few days before his first birthday in March 1993, Nancy, 39, didn’t think much of it. Moments later, after all, he was back playing hide-and-seek amidst the pillows on her bed. “I didn’t even mention it to my husband,” she says.
Days later, it was her husband, 50-year-old producer-director Jim Abrahams—co- creator of the Airplane!, Naked Gun and Hot Shots! movies—who noted a disturbing bit of behavior. He had been playing with Charlie in the backyard of the family’s million-dollar Spanish-style home in Santa Monica when suddenly the boy’s arms jerked up oddly in the air. Jim went to find Nancy.

“Have you ever seen him do this thing with his arms?” he asked her.

Nancy’s throat tightened. She had not—but this, combined with the limp spell, did not seem like normal kid stuff. The Abrahamses immediately took Charlie to a local pediatrician, Dr. William Gurfield. After witnessing a brief seizure in his office, Gurfield sent the Abrahamses to a pediatric neurologist, who conducted various tests and delivered the devastating news: Charlie had Lennox-Gastaut syndrome, a severe form of epilepsy, which, if unchecked, would cause mental retardation. Worse it was soon surmised, Charlie was part of the 15 percent of the nation’s 375,000 children with epilepsy who do not respond to drugs. Months later, after $100,000 worth of tests, drugs, and surgery, Jim and Nancy still had found nothing to stop the convulsions—lasting from a few seconds to 45 minutes—that gripped their child up to 100 times a day.

“I remember thinking it was clear that none of us would ever smile again,” says Jim, recalling his son’s almost constant state of seizure. “We actually believed our child had been given a fate worse than death.”
Stooping today to pick up his little boy, who has been seizure-free for 17 months, Jim lets out a sigh of relief. He was wrong—as were all the doctors who believed that drugs, if anything, could help Charlie. “I was raised to believe doctors are healers and that the answers to an illness come in prescriptions,” says Abrahams. “And that just isn’t true.”

After trying nearly all modern medicine had to offer, Jim and Nancy ultimately found an unorthodox—and low-tech—answer: a high-fat, no-sugar diet. But their path to that remedy tested them severely.
The failure of Charlie’s anticonvulsant drugs was one of the family’s lows. At one point, Charlie’s tiny body (he weighed 21 pounds at the time) was absorbing four drugs at once—and was still racked by seizures. “We would just hold him and wait for something to happen,” says Nancy. “It was a vicious cycle of sleepless nights, drugs and worry.”

The couple became virtual recluses. Jim stopped working to help his wife at home. “We were lucky,” he says. “We didn’t have to worry about finances.” For months they did little more than take their older children, Joseph, 10, and Jamie, 9, to school and shuttle Charlie to one of the eight doctors they consulted at various times. They tried to give Charlie as normal—or at least as safe—a life as possible. “We padded a room so he wouldn’t hurt himself when he would try to walk,” says Nancy. “We even put a helmet on his head.”

“The ketogenic diet got lost,” says Dr. John M. Freeman (at the Johns Hopkins Outpatient Center in Baltimore, with dietitian Millicent Kelly and a child with epilepsy), “because modern technology believes the next drug will work.”

In the late fall, Charlie’s primary physician, Dr. Donald Shields, head of pediatric neurology at the UCLA Medical Center, found two cysts in Charlie’s brain. Though he could find no direct connection to the seizures, Shields wanted to remove them just in case they were the cause. But the delicate 2 _ - hour operation proved fruitless. Shields told the Abrahamses that after months of exploring medical and surgical remedies, he saw no ready cure for Charlie. Desperate, the Abrahamses brought a faith healer into their home. “He prayed some sort of gibberish over Charlie, and we just cried, “says Jim. Then they took Charlie to a herbalist in Texas, who recommended exorcising modern technology. “He told us to unplug our microwave,” says Nancy.

Finally, Jim took the matter into his own hands, doing research in the UCLA Medical Center library. There, reading a 1990 book called Seizures and Epilepsy in Childhood: A Guide for Parents, co-authored by Dr. John M. Freeman, he discovered the ketogenic diet. A folk remedy for epilepsy first given serious medical consideration at the Mayo Clinic in Rochester, Minn., in the 1920s, the diet is based on ketosis, a change in the body’s metabolic state in which the body burns primarily fat, not sugar, for energy.

In this book, Freeman, who since 1969 has used the diet to treat hundreds of children with epilepsy at Johns Hopkins Hospital in Baltimore, claimed a 30 percent success rate in stopping seizures. Jim immediately contacted Charlie’s physician., Dr. Shields, who was unenthusiastic. “A lot of people had tried the diet and not had much success,” says Shields. “Myself included.”

Undeterred, Abrahams called Dr. Freeman at Johns Hopkins, then one of a few institutions besides the Mayo Clinic to administer the diet. A few weeks later Jim, Nancy and Charlie were sitting in Freeman’s waiting room. After undergoing a two-day fast to cleanse his system of sugar, Charlie began a meticulously regulated regimen of fish, poultry, vegetables and fruit enriched with hearty portions of red meat, heavy cream, butter, olive oil and other high-fat foods. On day three, Charlie’s seizures stopped. As with all patients who successfully use the diet, no one knows exactly why. “It’s witchcraft,” says Dr. Freeman, half in jest.

What experts, including Dr. Freeman and Dr. Shields, do know is that the prescribed quantities and combinations of food must be strictly followed or the diet won’t work. That’s one reason why the diet is a last resort. “It required an almost overwhelming time commitment to do it right,” says Shields.

“Even a change of toothpaste can throw it off track,” says Jim.

“At first I’d measure everything and then Jim would re-measure it,” says Nancy. “But now it takes only five minutes to prepare a meal. It’s much easier than giving him drugs six times a day.”

After wrapping Hot Shots! Part Deux in ’93, Jim (with Charlie Sheen) stopped working.

Charlie and his parents cheered on Jamie at a basketball game in January.

“They asked if Charlie would die,” says Abrahams of son Joseph and daughter Jamie.

Despite his initial skepticism, Shields has been inspired by Charlie’s success. “I said I would reassess what I think about the diet if Charlie responded to it,” he says. “And that’s what I did.” Indeed, Shields has started a ketogenic diet program—with about 40 percent success rate so far—for patients who do not respond to drugs. “It’s important to emphasize that this is not a first line of treatment,” Shields says. “As old as it is, we still know more about drugs than we do about this diet.”

The Abrahamses have made the diet a crusade; in February of 1994, they founded the Charlie Foundation to Help Cure Pediatric Epilepsy (1-800-FOR-KETO). One of the foundation’s goals is to teach doctors about the diet. With its help, 11 clinics around the country now offer ketogenic diet programs.

But the couple’s most important mission remains looking after their own little patient. Charlie will remain on the diet for another year. After that, if all is well, he will start eating other foods. Amazingly, he suffered no brain damage. Nancy says he is normal 3-year-old. “I read him a book and he finishes the sentences,” she says. “And he’s learned to climb on chairs and things.”

Jim has returned to work—but not, for now, to comedy. Instead he is producing a made-for-TV movie based on the true story of another epileptic child who was saved by the ketogenic diet. “It’s about a woman taking the medical future of her son into her own hands,” he says. “And that is certainly the moral of our story: You have to trust yourself.” When the show airs late this year, the family will be gathered around the TV—an exception to the house rule. “At night we never watch TV,” says Nancy with a smile. “We just watch Charlie.”

* KAREN S. SCHNEIDER
* JOYCE WAGNER in Los Angeles

Read more...

Articles on the Ketogenic Diet

 

Ketogenic Diet and Related Dietary Treatments. Special Issue Epilepsia Volume 49 Issue s8 , Pages 1-133. - 11/2008

 

NY Times reports landmark study on the ketogenic diet – 5/2008

 

Ketogenic Diets: An Update for Child Neurologists – 6/2009

 

LA Times reports landmark study on the ketogenic diet.

 

Symposium Summary; diet therapy for brain disorders – 4/200

 
 

Fighting Epilepsy With A Fork (2008)

 

CNN Interactive: Study shows high fat, low carb diet helps epileptic children – 12/1998

 

Evidence a High-Fat Diet Works to Treat Epilepsy (N.Y. Times, 2008)

 

USA Today reports a ‘miracle’ diet to treat children with epilepsy– 1/1999

 
 
People Magazine - "Recipe for hope" – 1994
 
 

Optimal clinical management of children receiving the diet.

 

Epilepsy Nutrition 2013

 

Keto News Winter 2009

Keto News Fall 2009

Keto News Spring 2009

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Keto News Summer 2010

Keto News Winter 2011

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Keto News Winter 2012

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Medical Publications

Ketogenic Diet Publications

Articles are listed alphabetically by author in the following categories:

  • Ketogenic Diet
  • Low Glycemic Index Treatment
  • Modified Atkins Diet
  • Glucose-1 Transporter Deficiency Syndrome
  • Basic science research

Ketogenic diet

Al-Mudallal AS, LaManna JC, Lust DW, Harik S. Diet-induced ketosis does not cause cerebral acidosis. Epilepsia 1996:37(3):258-261.

 

Bainbridge JL, Gidal BE, Ryan M. The ketogenic diet. Pharmacotherapy 1999;19(6)782-786.

Ballaban-Gil K, Callahan C, O'Dell C, Pappo M, Moshé S, Shinnar S. Complications of the ketogenic diet. Epilepsia 1998;39(7):744-748.

Bank IM, Shemie SD, Rosenblatt B, Bernard C, Mackie AS. Sudden cardiac death in association with the ketogenic diet. Pediatr Neurol. 2008;39(6):429-431.

Baran~ ano KW, Hartman AL. The ketogenic diet: uses in epilepsy and other neurologic illnesses. Curr Treat Options Neurol. 2008;10(6):410-419.

Bergqvist CAG, Schall JI, Stallings VA. Vitamin D status in children with intractable epilepsy and impact of the ketogenic diet. Epilepsia 2007;48(1):66-71,2007.

Bergqvist CAG, Schall JI, Gallagher PR, Cnaan A, Stallings VA. Fasting versus gradual initiation of the ketogenic diet: a prospective, randomized clinical trial of efficacy. Epilepsia 2005;46(11)1810-1819.

Bergqvist CAG, Chee CM, Lutchka L, Rychik J, Stallings VA. Selenium deficiency associated with cardiomyopathy: a complication of the ketogenic diet. Epilepsia 2003;44(4):618-620.

Best TH, Franz DN, Gilbert DL, Nelson DP, Epstein MR. Cardiac complications in pediatric patients on the ketogenic diet. Neurology. 2000;54(12):2328-2330.

Bettler MA. Vitamin and mineral deficiencies related to the ketogenic diet. Building Block for Life; a publication of the Pediatric Nutrition Practice Group of the American Dietetic Assoc. 2001;24:5-9.

Berry-Kravis E, Booth G, Sanchez AC, Woodbury-Kolb J. Carnitine levels and the ketogenic diet. Epilepsia 2001;42(11):1445-51.

Bough KJ, Rho JM. Anticonvulsant Mechanisms of the Ketogenic Diet. Epilepsia, 2007;48(1):43-58.

Bough KJ, Eagles DA. Comparison of the anticonvulsant efficacies and neurotoxic effects of valproic acid, phenytoin, and the ketogenic diet. Epilepsia. 2001;42(10):1345-1353.

Caraballo RH, Cersósimo, Sakr D, Cresta A, Escobal N, Fejerman N. Ketogenic diet in patients with dravet syndrome. Epilepsia 2005;46(9):1539-1544.

Caraballo RH, Cersósimo, Sakr D, Cresta A, Escobal N, Fejerman N. Ketogenic diet in patients with myoclonic-astatic epilepsy. Epilepsia 2006;8(2):151-5.

Casey JC, McGrogan J, Pillas D, Pyzik P, Freeman JM, Vining EPG. The implementation and maintenance of the ketogenic diet in children. Journal of Neuroscience Nursing 1999;31:294-302.

Chesney D, Brouhard BH, Wyllie E, Powaski K. Biochemical abnormalities of the ketogenic diet in children. Clin Pediatr. 1999;38(2):107-109.

DiMario FJ, Holland J. The ketogenic diet: a review of the experience at Connecticut children's medical center. Pediatric Neurology 2002;26(4):288-292.

Erickson JC, Jabbari B, Difazio MP. Basal ganglia injury as a complication of the ketogenic diet. Movement Disorders 2003;18(4):448-51.

Farasat S, Kossoff EH, Pillas DJ, et al. The importance of cognition in parental expectations prior to starting the ketogenic diet. Epilepsy Behav. 2006;8(2):406-410.

Freeman JM, Kossoff EH, Hartman AL. The ketogenic diet: one decade later. Pediatrics 2007; 119:535-543.

Freeman JM. What every pediatrician should know about the ketogenic diet. Contemporary Pediatrics 2003;20(5):113-127.

Freeman JM, 10 questions about the ketogenic diet. The Neurologist 2000;6(3):197-201.

Freeman JM, Vining EPG, Pillas DJ, Casey JC, Kelly MT. Efficacy of the ketogenic diet: a prospective evaluation in 150 children. Pediatrics 1998;102:1358-1363.

Freeman JM, Vining EPG. Seizures rapidly decrease after fasting: preliminary studies of the ketogenic diet. Arch Pediatrics & Adolescent Medicine 1999;153:946-949.

Freeman JM, Vining EPG, Kossoff EH, Pyzik PL, Ye X, Goodman SN. A blinded, crossover study of the ketogenic diet. Epilepsia. 2009;50(2):322-325

Furth SL, Casey JC, Pyzik PL, Neu AM, Docimo SG, Vining EPG, Freeman JM, Fivush BA. Risk factors for urolithiasis in children on the ketogenic diet. Pediatric Nephrology 2000;15:787-790.

Gilbert DL, Pyzik PL, Vining EPG, Freeman JN. Medication cost reduction in children on the ketogenic diet: data from a prospective study of 150 children over one year. Journal of Child Neurology 1999;14:469-471.

Gilbert DL, Pyzik PL, Freeman JM. The ketogenic diet: seizure control correlates better with serum ß-hydroxybutryate than urine ketones. J Child Neurol 2000;15:789-790.

Groesbeck DK, Bluml RM, Kossoff EH. Long-term use of the ketogenic diet in the treatment of epilepsy. Dev Med Child Neurol. 2006;48(12):978-981.

Hallböök T, Kohler S., Rosén I. Effects of ketogenic diet on epileptiform activity in children with therapy resistant epilepsy. Epilepsy Res 2007 Dec; 77(2-3):134-40.

Hallböök T, Lundgren J, Rosén I. Ketogenic diet improves sleep quality in children with therapy-resistant epilepsy. Epilepsia 2007:48(1):59-65.

Hartman AL, Vining EPG. Clinical aspects of the ketogenic diet. Epilepsia 2007;48(1):31- 42.

Hemingway C, McGrogan J, Freeman JM. The energy requirements of spasticity. Developmental Medicine Child Neurology 2001;43:277-278.

Hemingway C, Freeman JM, Pillas DJ, Pyzik PL. The ketogenic diet: a 3-6 year follow-up of 150 children prospectively enrolled. Pediatrics 2001:108;898-905.

Hemingway C, Pyzik PL, Freeman JM. Changing physician attitudes toward the ketogenic diet: a parent centered approach to physician education about a medication alternative. Epilepsy and Behavior 2001;2:574-578.

Henderson BC, Filloux FM, Alder SC, Lyon, JL, Caplin DA. Efficacy of the ketogenic diet as a treatment option for epilepsy: Meta-analysis. J Child Neurol; 2006; 21(3):193-198.

Hosain SA, La Vega-Talbott M, Solomon GE. Ketogenic diet in pediatric epilepsy patients with gastrostomy feeding. Pediatr Neurol. 2005;32(2):81-83.

Howrie DL, McGhee KH, Crumrine PK, Katyal N. The ketogenic diet: the need for a multidisciplinary approach. The Annals of Pharmacotherapy 1998;32:384-385.

Jung da E, Kang HC, Kim HD. Long-term outcome of the ketogenic diet for intractable childhood epilepsy with focal malformation of cortical development. Pediatrics. 2008;122(2):e330-e333.

Kang HC, Kim JY, Kim DW, Kim HD. Efficacy and safety of the ketogenic diet for intractable childhood epilepsy: Korean multicenter experience. Epilepsia 2005;46(2):272- 279.

Kang HC, Lee MY, Kim DH, Lee SJ, Slama A. Safe and effective use of the ketogenic diet in children with epilepsy and mitochondrial respiratory chain complex defects. Epilepsia 2007;48(1):82-88.

Kang HC, Chung DE, Kim DW, Kim HD. Early- and late-onset complications of the ketogenic diet for intractable epilepsy. Epilepsia 2004;45(9):116-1123.

Keene DL. A systematic review of the use of the ketogenic diet in childhood epilepsy. Pediatr Neurol. 2006;35(1):1-5.

Khoi DT, Kossoff EH, Rubenstein JE, Pyzik PL, McGrogan JR, Vining EPG. Can you predict an immediate, complete, and sustained response to the ketogenic diet? Epilepsia 2005;46(4):580-582.

Kim DW, Kang HC, Park JC, Kim DH. Benefits of the nonfasting ketogenic diet compared with the initial fasting ketogenic diet. Pediatrics 2004;114:1627-1630.

Klepper J, Leiendecker B, Bredahl R, Athanassopoulos S, Heinen F, Gertsen E, Florcken A, Metz A, Voit T. Introduction of a ketogenic diet in young infants. J Inherit Metab Dis. 2002;25(6):449-60

Kossoff EH, Laux LC, Blackford R, et al. When do seizures improve with the ketogenic diet? Epilepsia. 2008;49(2):329-333.

Kossoff EH, Pyzik PL, Furth SL, et al. Kidney stones, carbonic anhydrase inhibitors, and the ketogenic diet. Epilepsia. 2002;43:1168-1171.

Kossoff EH, Pyzik PL, Rubenstein JE, Bergqvist AGC, Buchhalter JR, Donner EJ, Nordli DR, Wheless JW. Combined ketogenic diet and vagus nerve stimulation:rational polytherapy? Epilepsia 2007;48(1):77-81.

Kossoff EH. More fat and fewer seizures: dietary therapies for epilepsy. Lancet 2004;(3)415-420.

Kossoff EH, Hedderick EF, Turner Z, Freeman JM. A casecontrol evaluation of the ketogenic diet versus ACTH for new onset infantile spasms. Epilepsia. 2008;49(9):1504- 1509.

Kossoff EH, McGrogan JR. Worldwide use of the ketogenic diet. Epilepsia 2005;46(2):280-289.

Kossoff EH, McGrogan JR, Freeman JM. Benefits of an all-liquid ketogenic diet. Epilepsia 2004;45:1163.

Kossoff EH, Pyzik PL, McGrogan JR, Vining EPG, Freeman JM. Efficacy of the ketogenic diet for infantile spasms. Pediatrics 2002; 109(5):780-783.

Kossoff EH, Pyzik PL, Rubenstein JE, et al. Combined ketogenic diet and vagus nerve stimulation: rational polytherapy? Epilepsia. 2007;48(1):77-81.

Kossoff EH, Thiele EA, Pfeifer HH, McGrogan JR, Freeman JM. Tuberous sclerosis complex and the ketogenic diet. Epilepsia (in press).

Kossoff EH, Pyzik PL, Furth SL, Hladky HD, Freeman JM, Vining EPG. Kidney stones, carbonic anhydrase inhibitors, and the ketogenic diet. Epilepsia 2002;43(10):1168-1171.

Kossoff EH, Zupec-Kania BA, Amark PE, et al. Optimal clinical management of children receiving the ketogenic diet: recommendations of the international ketogenic diet study group. Epilepsia.2009;50(2):304-317.

Kwiterovitch PO, Vining EPG, Pyzik P, Skolasky R, Freeman JM. The effect of a high fat, ketogenic diet on the plasma levels of lipids, lipoproteins and apolipoproteins in children. JAMA 2002;290:912-920.

Lefevre F, Aronson N. Ketogenic diet for the treatment of refractory epilepsy in children: a systematic review of efficacy. Pediatrics 2005;105:46-53.

Levy R, Cooper P. Ketogenic diet for epilepsy. Cochrane Database Syst Rev. 2003;3:CD001903.

Lyczkowski DA, Pfeifer HH, Ghosh S, Thiele EA. Safety and tolerability of the ketogenic diet in pediatric epilepsy: effects of valproate combination therapy. Epilepsia 2005:46(9):1533-1538.

Kilaru S, Bergqvist AG. Current treatment of myoclonic astatic epilepsy: clinical experience at the Children's Hospital of Philadelphia. Epilepsia. 2007;48(9):1703-1707.

Mady MA, Kossoff EH, McGregor AL, Wheless JW, Pyzik PL, Freeman JM. The ketogenic diet: adolescents can do it too. Epilepsia 2003;44(6):847-851.

Mandel A, Ballew M, Pina-Garza JE, Stalmasek V, Clemens LE. Medical costs are reduced in children with severe epilepsy who are successfully maintained on a ketogenic diet. Future dimensions in clinical nutrition management 1998;17(3):12-13.

Marsh EB, Freeman JM, Kossoff EH, et al. The outcome of children with intractable seizures: a 3- to 6-year follow-up of 67 children who remained on the ketogenic diet less than one year. Epilepsia. 2006;47(2):425-430.

Martinez CC, Pyzik P, Kossof EH. Discontinuing the ketogenic diet in seizure-free children: recurrence and risk factors. Epilepsia 2007;48(1):187-190.

Maydell BV, Wyllie E, Akhtar N, Kotagal P, Powaski K, Cook K, Weinstock A, Rothner DA. Efficacy of the ketogenic diet in focal versus generalized seizures. Pediatric Neurology 2001;25:208-212.

Morris AAM. Cerebral ketone body metabolism. J. Inherit. Metab. Dis. 2005;28:109-121. Murphy P, Likhodii S, Nylen K. The antidepressant properties of the ketogenic diet. Biol Psychiatry 2004;56(12):981-3.

Morrison PF, Pyzik PL, Hamdy R, Hartman AL, Kossoff EH. The influence of concurrent anticonvulsants on the efficacy of the ketogenic diet. Epilepsia. In Press.

Neal EG, Chaffe HM, Edwards N, Lawson MS, Schwartz RH, Cross JH. Growth of children on classical and medium chain triglyceride diets. Pediatrics. 2008;122(2):e334-e340.

Neal EG, Chaffe H, Schwartz RH, et al. The ketogenic diet for the treatment of childhood epilepsy: a randomised controlled trial. Lancet Neurol. 2008;7(6):500-506.

Neal EG, ChaffeH, Schwartz RH, et al. A randomized trial of classical and medium-chain triglyceride ketogenic diets in the treatment of childhood epilepsy. Epilepsia. 2009;50(5):1109-1117.

Nizamuddin J, Turner Z, Rubenstein JE, Pyzik PL, Kossoff EH. Management and risk factors for dyslipidemia with the ketogenic diet. J Child Neurol. 2008;23(7):758-761.

Nylen K, Likhoddi S, Abdelmalik PA, Clarke J, Burnham WM. A comparison of the ability of a 4:1 ketogenic diet and a 6.3:1 ketogenic diet to elevate seizure thresholds in adult and young rats. Epilepsia 2005;46(8):1198-1204.

Phelps SJ, Hovinga CA, Rose DF, Vaugn C, Olsen-Creasy K. The ketogenic diet in pediatric epilepsy. Nutrition in Clinical Practice 1998;13:267-282.

Porta N, Vallee L, Boutry E, et al. Comparison of seizure reductionand serum fatty acid levels after receiving the ketogenic and modified Atkins diet. Seizure. 2009;18(5):359- 364.

Pulsifer MB, Gordon JM, Brandt J, Vining EP, Freeman JM. Effects of ketogenic diet on development and behavior: preliminary report of a prospective study. Dev Med Child Neurol. 2001;43(5):301-306.

Rubenstein JE, Kossoff EH, Pyxik PL, Vining PG, McGrogan JR, Freeman JM. Experience in the use of the ketogenic diet as early therapy. J Child Neurol. 2005;20(1):31-34.

 

Sampath A, Kossoff EH, Furth SL, Pyzik PL, Vining EP. Kidney stones and the ketogenic diet: risk factors and prevention. J Child Neurol. 2007;22(4):375-378.

Seo JH, Lee JS, Kim HD. Efficacy and tolerability of the ketogenic diet according to lipid:nonlipid ratios; comparison of 3:1 with 4:1 diet. Epilepsia 2007.48(4):801-5.

Spulber G, Spulber S, Hagena¨s L, Amark P, Dahlin M. Growth dependence on insulinlike growth factor-1 during the ketogenic diet. Epilepsia. 2009;50(2):297-303.

Stainman RS, Turner Z, Rubenstein JE, Kossoff EH. Decreased relative efficacy of the ketogenic diet for children with surgically approachable epilepsy. Seizure. 2007;16(7):615-619.

Stewart WA, Gordon K, Camfield P. Acute pancreatitis causing death in a child on the ketogenic diet. J Child Neurol. 2001;16(9):682.

Sullivan PB, Lambert B, Rose M, Ford-Adams M, Johnson A, Griffiths P. Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study. Dev Med Child Neuro. 2000;42(10):674-80.

Swartzkroin PA, RHO JM. Can the ketogenic diet be anticonvulsant as well as antiepileptiogenic?. Epilepsia 2003;44:752-760.

Swink TD, Vining EPG, Freeman JM. The ketogenic diet 1996. Advances in Pediatrics 1997;44:297-329.

Takeoka M, Riviello JJ, Pfeifer H, Thiele EA. Concomitant treatment with topiramate and ketogenic diet in pediatric epilepsy. Epilepsia 2002;43(9):1072-1075.

Tallian KB, Nahata MC, Chang-Yong T. Role of the ketogenic diet in children with intractable seizures. Annals of Pharmacotherapy 1998;32:349-356.

Thiele EA, Assessing the efficacy of antiepileptic treatments: the ketogenic diet. Epilepsia 2003;44(Suppl.7):26-29.

Valencia I, Pfeifer H, Thiele EA. General anesthesia and the ketogenic diet: clinical experience in nine patients. Epilepsia 2002; 43(5):525-9

Vamecq J, Vallée L, Lesage F, Gressens P, Stables JP. Antiepileptic popular ketogenic diet: emerging twists in an ancient story. Progress in Neurobiology 2005;75:1-28.

Vining EPG, Freeman JM. A multi-center study of the efficacy of the ketogenic diet. Archives of Neurology 1998;55:1433-1437.

Vining EPG, Pyzik P, McGrogan J, Hladky H, Ananda A, Kreigler S. Growth of children on the ketogenic diet. Develp Med. Child Neurology 2002;44:796-802.

Williams S, Basualdo-Hammond C, Curtis R, Schuller R. Growth retardation in children with epilepsy on the ketogenic diet: a retrospective chart review. J Am Diet Assoc. 2002;102(3):405-407.

Wheless JW. The ketogenic diet: an effective medical therapy with side effects. Journal of Child Neurology 2001;16:633-635.

Woody RD, Steele RW, Whitefield L, Knapple BS, Neylon S, Pilkington Jr. Impaired neutrophil function in children with seizures treated with the ketogenic diet. J of Pediatrics 1989;115(3)427-430.

Zupec-Kania B. Multidisciplinary management of the ketogenic diet. Building Block for Life; Pediatric Nutrition Practice Group 2001;24(2)1-5.

Zupec-Kania B. Summary of ketogenic diet survey of practitioners (1998-1999). Building Block for Life; Pediatric Nutrition Practice Group 2001;24(2)12-14.

Zupec-Kania BA, Zupanc M. Long-term management of the ketogenic diet: seizure monitoring, nutrition, and supplementation. Epilepsia. 2008;49(supp1 8):23-26.

 

Low Glycemic Index Treatment

Pfeifer H, Thiele E. Low-glycemic-index treatment: A liberalized ketogenic diet for treatment of intractable epilepsy. Neurology 2005;65:1810-1812.

Muzykewicz DA, Lyczkowski DA, Memon N, Conant KD, Pfeifer HH, Thiele EA. Efficacy, safety, and tolerability of the low glycemic index treatment in pediatric epilepsy. Epilepsia. 2009;50(5):1118-1126.

Modified Atkins Diet

Carrette E, Vonck K, de Herdt V, et al. A pilot trial with modified Atkins' diet in adult patients with refractory epilepsy. Clin Neurol Neurosurg. 2008;110(8):797-803.

Ito S, Oguni H, Ito Y, Ishigaki K, Ohinata J, Osawa M. Modified Atkins diet therapy for a case with glucose transporter type 1 deficiency syndrome. Brain Dev. 2008;30(3):226- 228.

Kang HC, Lee HS, You SJ, Kang DC, Ko TS, Kim HD. Use of a modified atkins diet in intractable childhood epilepsy. Epilepsia 2007;48(1):182-186.

Kossoff EH, Dorward JL, Molinero MR, et al. The Modified Atkins Diet: a potential treatment for developing countries.Epilepsia. 2008;49(9):1646-1647.

Kossoff EH, McGrogan JR, Bluml RM, Pillas DJ, Rubenstein JE, Vining EP. A modified Atkins diet is effective for the treatment of intractable pediatric epilepsy. Epilepsia. 2006;47(2):421-424.

Kossoff EH, Krauss GL, McGrogan JR, Freeman JM. Efficacy of the…. atkins diet as therapy for intractable epilepsy. Neurology 2003;61:1789-91.

Kossoff EH, Pyzik PL, McGrogan JR, Rubenstein JE. Impact of early versus late anticonvulsant reduction after ketogenic diet initiation. Epilepsy Behav. 2004;5(4):499- 502.

Kossoff EH, Rowley H, Sinha SR, Vining EP. A prospective study of the modified Atkins diet for intractable epilepsy inadults. Epilepsia. 2008;49(2):316-319.

Kossoff EH, Turner Z, Bluml RM, Pyzik PL, Vining EP. A randomized, crossover comparison of daily carbohydrate limits using the modified Atkins diet. Epilepsy Behav. 2007;10(3):432-436.

Weber S, Mølgaard C, Karentaudorf, Uldall P. Modified Atkins diet to children and adolescents with medical intractable epilepsy. Seizure. 2009;18(4):237-240.

 

Basic Science Research

Bough KJ, Wetherington J, Hassel B, et al. Mitochondrial biogenesis in the anticonvulsant mechanism of the ketogenic diet.

Ann Neurol. 2006;60(2):223-235. Bough KJ, Rho JM. Anticonvulsant Mechanisms of the ketogenic diet. Epilepsia 2007;48(1):43-58.

Bough KJ, Schwartzkroin PA, Rho JM. Calorie restriction and ketogenic diet diminish neuronal excitability in rat dentate gyrus in vivo. Epilepsia 2003;44(6):752-760.

Garriga-Canut M, Schoenike B, Qazi R, et al. 2-Deoxy-D-glucose reduces epilepsy progression by NRSF-CtBP dependent metabolic regulation of chromatin structure. Nat Neurosci. 2006;9(11):1382-1387.

Gasior M, Rogawski MA, Hartman AL. Neuroprotective and disease-modifying effects of the ketogenic diet. Behav Pharmacol. 2006;17(5-6):431-439.

Lian XY, Khan FA, Stringer JL. Fructose-1,6-bisphosphate has anticonvulsant activity in models of acute seizures in adult rats. J Neurosci. 2007;27(44):12007-12011.

Likhodii SS, Serbanescu I, Cortez MA, Murphy P, Snead OC 3rd, Burnham WM. Anticonvulsant properties of acetone, a brain ketone elevated by the ketogenic diet. Ann Neurol. 2003;54(2):219-226.

Maalouf M, Rho JM, Mattson MP. The neuroprotective properties of calorie restriction, the ketogenic diet, and ketone bodies. Brain Res Rev. 2009;59(2):293-315.

Ma W, Berg J, Yellen G. Ketogenic diet metabolites reduce firing in central neurons by opening K(ATP) channels. J Neurosci. 2007;27(14):3618-3625.

Rho JM, Anderson GD, Donevan SD, et al. Acetoacetate, acetone, and dibenzylamine (a contaminant in 1-(þ)-beta-hydroxybutyrate) exhibit direct anticonvulsant actions in vivo. Epilepsia. 2002;43(4):358-361.

Seyfried TN, Kiebish M, Mukherjee P, Marsh J. Targeting energy metabolism in brain cancer with calorically restricted ketogenic diets. Epilepsia. 2008;49(suppl 8):114-116.

Stafstrom CE, Ockuly JC, Murphree L, Valley MT, Roopra A, Sutula TP. Anticonvulsant and antiepileptic actions of 2-deoxy-D-glucose in epilepsy models. Ann Neurol. 2009; 65(4):435-447.

Van der Auwera I, Wera S, Van Leuven F, Henderson ST. A ketogenic diet reduces amyloid beta 40 and 42 in a mouse model of Alzheimer's disease. Nutr Metab (Lond). 2005;2:28.

Zhao Z, Lange DJ, Voustianiouk A, et al. The ketogenic diet as a potential novel therapeutic intervention in amyotrophic lateral sclerosis. BMC Neurosci. 2006;7:29.

Glucose-1 Transporter Deficiency Syndrome

Friedman JR, Thiele EA, Wang D, Levine KB, Cloherty EK, Pfeifer HH, DeVivo DC, Carruthers A, Natowicz MR. Atypical GLUT1 deficiency with prominent movement disorder responsive to ketogenic diet. Movement Disorders 2005;(in press).

Books

Epilepsy and the Ketogenic Diet. C. Stafstrom & J. Rho. Eds. Totowa, NJ: Humana Press, 2004, 375 pp. www.humanapress.com

The Ketogenic Diet; A Treatment for Children and Others with Epilepsy. John M. Freeman, MD, Eric Kossoff, MD, Jennifer B. Freeman, Millicent T. Kelly, RD, LD 4th Edition, Demos Press, NY, 2006, 328pp

Helping Your Child Succeed on the Ketogenic Diet (Snyder) Demos 2007.

 

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Epilepsy Terminology

Terminology

Epilepsy Terminology

 

Epilepsy is synonymous "with seizure disorder". An "epilepsy" diagnosis is given when an individual has 2 or more unprovoked seizures.

Seizure—A surge in neuronal activity in the brain that can manifest in body movement or function, sensation, awareness or behavior. A seizure can last from a few seconds to status epilepticus, a continuous seizure that will not stop without intervention. Seizures are often associated with a sudden and involuntary contraction of a group of muscles and loss of consciousness. However, a seizure can also be as subtle as marching numbness of a part of the body, a brief or long term loss of memory, sparkling or flashes, sensing/discharging of an unpleasant odor similar to alcohol base being produced by internal organs, a strange epigastric sensation or a sensation of fear and total state of confusion which in some cases leads to death during seizure.

Seizure classification Seizure types are organized according to whether the source of the seizure within the brain is localized or distributed.

  • Partial seizures begin with an electrical discharge from a limited area.
    • Simple partial seizures begin in the motor cortex of the frontal lobe and may include involuntary movements but the individual does not lose consciousness.
    • Complex partial seizures usually begin in the temporal lobe or frontal lobe may include involuntary movement but involves loss of consciousness.
    • Simple partial seizures with secondary generalization is a simple partial seizure that spreads to involve the entire brain causing the body to stiffen and muscle jerking.
  • Generalized seizures begin with an electrical discharge that involves both sides of the brain at once.
    • Absence seizures involve an interruption to consciousness where the person experiencing the seizure seems to become vacant and unresponsive for a short period of time (usually up to 30 seconds). Slight muscle twitching may occur.
    • Myoclonic seizures involve an extremely brief (< 0.1 second) muscle contraction and can result in jerky movements of muscles or muscle groups.
    • Tonic seizures involve the loss of muscle tone, causing the person to fall to the ground.
    • Tonic-clonic seizures (formerly known as grand mal) has two parts, a tonic phase and a clonic phase. First the tonic phase of muscle stiffening followed by the clonic phase which means repeated jerking. During the seizure, the person loses consciousness; may drool; bite his cheek or lip; or lose bladder or bowel control. After the seizure, the person is usually confused and tired.
    • Status epilepticus refers to continuous seizure activity with no recovery between successive seizures. When the seizures are convulsive, it is a life-threatening condition and emergency medical assistance should be called immediately if this is suspected. A tonic-clonic seizure lasting longer than 5 minutes (or two minutes longer than a given person's usual seizures) is usually considered grounds for calling the emergency services.

Epilepsy statistics according to the Epilepsy Foundation

  • 200,000 new cases of epilepsy are diagnosed each year.
  • Incidence is highest under the age of 2 and over 65.
  • 45,000 children under the age of 15 develop epilepsy each year.
  • Males are slightly more likely to develop epilepsy than females.
  • Incidence is greater in African American and socially disadvantaged populations.
  • Trend shows decreased incidence in children; increased incidence in the elderly.
  • In 70 percent of new cases, no cause is apparent.
  • 50 percent of people with new cases of epilepsy will have generalized onset seizures.
  • Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.

Anti-epileptic drugs (AEDs) are medications used to treat seizures.

Catemenial seizures refers to seizure activity associated with a woman's menstrual cycle.

Idiopathic epilepsy, is epilepsy with an unknown cause.

Intractable epilepsy also called refractory seizures are seizures that are not controlled by AEDs.

Epilepsy syndromes are specific syndromes that are associated with one or more seizure types (however, not all seizures will be part of a syndrome).

Aicardi syndrome Lennox-Gastaut Syndrome
Angelman syndrome Migrating partial epilepsy in infancy
Benign epilepsy of childhood with occipital paroxysms Myoclonic astatic epilepsy/Doose syn.
Benign myoclonic epilepsy in infancy Ohtahara Syndrome
Benign partial epilepsy in infancy Panayiotopoulos syndrome
Benign rolandic epilepsy Pyridoxine dependency
Childhood absence epilepsy Ramsay Hunt syndrome
Early myoclonic encephalopathy Rasmussen syndrome
Electrical status epilepticus during slow-wave sleep Rett syndrome
Epilepsy with myoclonic absences Ring chromosome 20 syndrome
Eyelid myoclonia with absences Severe myoclonic epilepsy in infancy including Dravet syndrome
Gelastatic epilepsy Sturge-Weber syndrome
Generalized epilepsy with febrile seizure plus West syndrome (infantile spasms)
Juvenile myoclonic epilepsy
Landau Kleffner Syndrome

EEG stands for Electroencephalography and in the broadest sense of the term, refers to the measurement of the electrical activity produced by the brain.

MRI stands for Magnetic resonance imaging and is primarily a radiology technique most commonly used to visualize the structure and function of the body.

SPECT stands for Single photon emission computed tomography is a nuclear medicine tomographic imaging technique using gamma rays. It is able to provide true 3D information.

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