Charlie’s Story: The Ketogenic Diet and Epilepsy

Charlie is a son of the famous American film director Jim Abrahams. When Charlie was one year old, he had numerous daily seizures. No medication for epilepsy helped, and he had also had an unsuccessful brain surgery. But everything changed when he came to Johns Hopkins Hospital, where he was cured of his epilepsy by the ketogenic diet. The diet was undertaken despite resistance from the five pediatric neurologists he had seen.

When Charlie’s parents realized that Charlie was but one of hundreds of thousands of children whose families were either not being informed, or being misinformed about dietary therapy, they started in 1994 The Charlie Foundation in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy.

 

Charlie’s Speech

On April 2, 2008 Charlie Abrahams, whose epilepsy had been cured by the ketogenic diet, addressed an audience of over 300 scientists, neurologists, dietitians, and nurses at the first “International Symposium on Dietary Therapy for Epilepsy and Other Neurological Disorders.” He presented an award to Millicent Kelly, R.D. the Johns Hopkins dietitian who taught his family the diet.

 

See Also:

…First Do No Harm

Ketogenic Diet: A Treatment for Epilepsy

 

Ketogenic Diet: A Treatment for Epilepsy

You might have heard the term “brain food” used to describe food that’s good for you. Doctors at Mayo Clinic say there really is a diet that benefits the brain. But this diet is not for everybody. It’s for kids who have epilepsy, and it’s based on extremely high fats and very few carbs. More on how the ketogenic diet is helping some kids with epilepsy become seizure free.

Video from Mayo Clinic, USA

 

High-Fat Ketogenic Diet Effectively Treats Persistent Childhood Seizures

The high-fat ketogenic diet can dramatically reduce or completely eliminate debilitating seizures in most children with infantile spasms, whose seizures persist despite medication, according to a Johns Hopkins Children’s Center study published in 2010 in the journal Epilepsia.

Infantile spasms, also called West syndrome, is a stubborn form of epilepsy that often does not get better with antiseizure drugs. Because poorly controlled infantile spasms may cause brain damage, the Hopkins team’s findings suggest the diet should be started at the earliest sign that medications aren’t working.

“Stopping or reducing the number of seizures can go a long way toward preserving neurological function, and the ketogenic diet should be our immediate next line of defense in children with persistent infantile spasms who don’t improve with medication,” says senior investigator Eric Kossoff, M.D., a pediatric neurologist and director of the ketogenic diet program at Hopkins Children’s.

The ketogenic diet, made up of high-fat foods and few carbohydrates, works by triggering biochemical changes that eliminate seizure-causing short circuits in the brain’s signaling system. It has been used successfully in several forms of epilepsy.

A small 2002 study by the same Hopkins team showed the diet worked well in a handful of children with infantile spasms. The new study is the largest analysis thus far showing just how effective the diet can be in children with this condition.

Of the 104 children treated by the Hopkins team, nearly 40 percent, or 38 children, became seizure-free for at least six months after being on the diet for anywhere from just a few days to 20 months. Of the 38, 30 have remained so without a relapse for at least two years.

After three months on the diet, one-third of the children had 90 percent fewer seizures, and after nine months on the diet, nearly half of the children in the study had 90 percent fewer seizures. Nearly two-thirds had half as many seizures after six months on the diet.

Nearly two-thirds of the children experienced improvement in their neurological and cognitive development, and nearly 30 percent were weaned off antiseizure medications after starting the diet.

Most of the children continued taking their medication even after starting the diet, the researchers say, because the two are not mutually exclusive and can often work in synergy.

Researchers also used the diet as first-line therapy in18 newly diagnosed infants never treated with drugs, 10 of whom became seizure free within two weeks of starting the diet. The finding suggests that, at least in some children, the diet may work well as first-line therapy, but the researchers say they need further and larger studies to help them identify patients for whom the diet is best used before medications. Hopkins Children’s neurologists are actively using the ketogenic diet as first-line treatment in children with infantile spasms with promising results.

Side effects, including constipation, heartburn, diarrhea and temporary spikes in cholesterol levels, occurred in one-third of the children, with six percent of them experiencing diminished growth.

Despite these side effects, a recent study by Kossoff and his team showed that the ketogenic diet is safe long term.

Conflict of interest disclosure: Dr. Kossoff has received grant support from Nutricia Inc., for unrelated research. The terms of these arrangements are being managed by the Johns Hopkins University in accordance with its conflict-of-interest policies.

 

Reference

Hong AM, Turner Z, Hamdy RF, Kossoff EH. Infantile spasms treated with the ketogenic diet: Prospective single-center experience in 104 consecutive infants. Epilepsia 2010; 51 (8): 1403–1407.

 

Related on the Web

High-Fat Ketogenic Diet to Control Seizures Is Safe Over Long Term (16.02.2010)

Infantile Spasms Information (National Institute of Neurological Disorders and Stroke)

Daily Potassium Citrate Wards Off Kidney Stones in Seizure Patients on High-Fat Diet (20.07.2009)

High Cholesterol Levels Drop Naturally in Children on High-Fat Antiseizure Diet (15.08.2010)

Modified Atkins Diet Effectively Treats Childhood Seizures (05.12.05)

Carson Harris-A Patient Story

 

…First Do No Harm

This is a 1997 television film, directed by Jim Abrahams, about a boy whose severe epilepsy, unresponsive to medications with terrible side effects, is controlled by the ketogenic diet. Aspects of the story mirror Abrahams’ own experience with his son Charlie.

When Lori Reimuller learns that her young son Robbie has epilepsy, she first trusts the judgment of the hospital staff in how best to bring it under control. As Robbie’s health slides radically downhill, however, she becomes frustrated and desperate, and so does her own research into the existing literature on treatments. When she decides to try the ketogenic diet, devised long ago by a doctor from Johns Hopkins, she is met with narrow-minded resistance from Robbie’s doctor, who is prepared to take legal action to prevent Lori from removing him from the hospital. This movie is an indictment of those in the medical profession who discuss only the treatment options they favor. Several of the minor characters are portrayed by people who have been not just helped, but cured by the ketogenic diet. Read More


 

See Also: 

Charlie’s Story: The Ketogenic Diet and Epilepsy

Ketogenic Diet: A Treatment for Epilepsy

High-Fat Ketogenic Diet Effectively Treats Persistent Childhood Seizures

Effects Of A Ketogenic Diet On The Quality Of Life In 16 Patients With Advanced Cancer: A Pilot Trial

Tumor patients exhibit an increased peripheral demand of fatty acids and protein. Contrarily, tumors utilize glucose as their main source of energy supply. Thus, a diet supplying the cancer patient with sufficient fat and protein for his demands while restricting the carbohydrates (CHO) tumors thrive on, could be a helpful strategy in improving the patients’ situation. A ketogenic diet (KD) fulfills these requirements. Therefore, a group of researchers at the University Hospital of Wuerzburg in Germany performed a pilot study to investigate the feasibility of a KD and its influence on the quality of life of patients with advanced metastatic tumors.

 

Melanie Schmidt, Nadja Pfetzer, Micheal Schwab, Ingrid Strauss and Ulrike Kämmerer
Effects of a ketogenic diet on the quality of life in 16 patients with advanced cancer: A pilot trial
Nutrition & Metabolism 2011; 8 (1): 54.


ABSTRACT

Background:
Tumor patients exhibit an increased peripheral demand of fatty acids and protein. Contrarily, tumors utilize glucose as their main source of energy supply. Thus, a diet supplying the cancer patient with sufficient fat and protein for his demands while restricting the carbohydrates (CHO) tumors thrive on, could be a helpful strategy in improving the patients’ situation. A ketogenic diet (KD) fulfills these requirements. Therefore, we performed a pilot study to investigate the feasibility of a KD and its influence on the quality of life of patients with advanced metastatic tumors.

Methods:
Sixteen patients with advanced metastatic tumors and no conventional therapeutic options participated in the study. The patients were instructed to follow a KD (less than 70 g CHO per day) with normal groceries and were provided with a supply of food additives to mix a protein/fat shake to simplify the 3-month intervention period. Quality of life [assessed by EORTC QLQ-C30 (version 2)], serum and general health parameters were determined at baseline, after every two weeks of follow-up, or after drop out. The effect of dietary change on metabolism was monitored daily by measuring urinary ketone bodies.

Results:
One patient did not tolerate the diet and dropped out within 3 days. Among those who tolerated the diet, two patients died early, one stopped after 2 weeks due to personal reasons, one felt unable to stick to the diet after 4 weeks, one stopped after 6 and two stopped after 7 and 8 weeks due to progress of the disease, one had to discontinue after 6 weeks to resume chemotherapy and five completed the 3 month intervention period. These five and the one who resumed chemotherapy after 6 weeks report an improved emotional functioning and less insomnia, while several other parameters of quality of life remained stable or worsened, reflecting their very advanced disease. Except for temporary constipation and fatigue, we found no severe adverse side effects, especially no changes in cholesterol or blood lipids.

Conclusions:
These pilot data suggest that a KD is suitable for even advanced cancer patients. It has no severe side effects and might improve aspects of quality of life and blood parameters in some patients with advanced metastatic tumors.