...first do no harm
Dr. Venita Jay, Bloorview Epilepsy Research Program, University of Toronto
February 8 marked the grand kick-off to the Epilepsy Ontario events for March, Epilepsy Awareness Month with a premiere screening of ...first do no harm at The Ford Centre for the Performing Arts. Unquestionably, there are few films which will have such significant impact and raise as many questions as Jim Abrahams' ...first do no harm, a film which highlights the role of the ketogenic diet in the treatment of intractable epilepsy. The film was aired on CityTV and ABC for public viewing on 16 February 1997.
This film will no doubt spark as much interest, controversy, and questions as the ketogenic diet itself. For Producer and Director Jim Abrahams, known for such hits as Airplane and the Naked Gun series, this is the second film dedicated to the ketogenic diet therapy for epilepsy, after the success of his first Charlie video. For Jim and Nancy Abrahams, the film celebrates a triumph over epilepsy and carries a special and personal message. Their son, Charlie, was afflicted with severe epileptic seizures at age one, which could not be cured by medical or surgical therapy. As a last resort, Charlie went on the ketogenic diet and has since been seizure free. This led them to initiatives such as the founding of the Charlie Foundation as a nonprofit organization promoting awareness, use and research about the ketogenic diet.
So what is the ketogenic diet? First, to put things in perspective, figures from Epilepsy Ontario indicate that there are more than 14,000 new cases of epilepsy reported annually in Canada. Of these, in 80% of cases, epilepsy develops before age 18, in 55% by age 10 and in 44% by age 5. The major form of treatment is long-term drug therapy and in some cases, surgery is undertaken to remove an epileptic focus in the brain. But there are patients refractory to drug therapy who may not be candidates for surgery. And needless to say, drugs are associated with varying severity of side effects. In this context, the ketogenic diet is an alternate form of epilepsy therapy, the exact mechanism of action of which remains unknown at the present time.
The concept of a ketogenic diet goes back to the 1920s, but data on the efficacy of the diet by standardized double blinded clinical studies are not available to date. The diet was developed in the 1920s as a treatment for intractable childhood seizures, when few antiepileptic drugs were available. This special diet is very high in fats and very low in protein and carbohydrates, thus tricking the body into thinking it is starving. This causes the body to burn fats for energy leading to a state of ketosis. How exactly this affects seizure activity or helps in seizure control in some cases of epilepsy remains undetermined.
Despite the use of this diet in the treatment of epilepsy since the 1920s, its exact mechanism remains unknown. Research was largely discontinued as newer antiepileptic drugs became available in the 1950s and 1960s; thus, the diet has not found universal acceptance amongst the medical community and still remains a subject of much controversy.
There are also advocates for the ketogenic diet. The diet may be prescribed when seizures are out of control and when the side effects of anticonvulsant drugs are unacceptable and surgery is not an option. It must be supervised by qualified specialists and demands strict adherence on part of the patient and family. One centre which offers a ketogenic diet program, The Johns Hopkins in Baltimore, published favorable results in a clinical study focusing on the therapeutic role of the diet. In Toronto, Dr. Rosalind Curtis, of the Bloorview MacMillan Centre has currently 29 children with epilepsy enrolled in the Ketogenic Diet Program. In her initial experience with the diet in 24 children, "Nine children remain seizure free, and 11 children have less than 50% reduction in seizures. In 4 children, there has been no reduction in seizures, but parents have elected to leave the children on the diet as there have been beneficial effects on behavior". The ketogenic diet requires strict compliance and at the Bloorview MacMillan Centre, the precise dietary calculation of the various components of a daily meal are meticulously worked out by the dietitian, Laurie Chen.
Dr. McIntyre Burham, President of Epilepsy Ontario, aptly summed up the likely reaction to the film from the public as well as the medical community, at the benefit premiere on February 8: "This is a powerful film....Some of you will love it and some of you will hate it..."
...first do no harm hopes to raise public awareness of this alternative form of epilepsy treatment. The superb cast includes two-time Oscar winner Meryl Streep, as a ferociously determined mother who, seeing her son Robbie fail traditional medical therapy, defies conventional wisdom and pursues this controversial drug treatment. Seth Adkins, who plays Robbie gives a startling, powerful and heartrending performance as a child whose life is turned around with the onset of uncontrollable seizures, which are refractory to drug treatment. The illness takes its toll on the family, socially and financially. Against all odds, Robbie's mother stands strong and embarks on her own research. When she learns of the ketogenic diet, she enrolls Robbie in a centre that offers the program, against much medical opposition. There are several members of the cast, who have been successful candidates of the ketogenic drug program. During the filming, much of which was done in King City, Seth Adkins would do a moving scene of a severe seizure attack, and a minute after the take, be an active child running around the sets!
Also in attendance at the premiere benefit were Dr. Rosalind Curtis, Dr. Dr. Stephen Cunnane, Diana Findlay (Executive Director of Epilepsy Ontario), Sheila Jarvis (Chief Executive Officer of the Bloorview MacMillan Centre) , executive members of the Epilepsy Ontario and, most importantly, the parents and children with epilepsy. One parent shared her positive experience with the group on the remarkable efficacy of the therapy in controlling her daughter's seizures.
Dr. Curtis answered several queries from the audience on various aspects of the ketogenic diet. Joy Cantle Jones (Epilepsy Ontario) and Alla Vilner (Bloorview Epilepsy Program) helped greatly to coordinate the events. The parents presented a plaque to Dr. Curtis and Jim Abrahams and an elegant reception followed the film viewing and discussion.
Well, the film is out for viewing! Epilepsy Ontario in its chapters and associates throughout the province, celebrated 40 years of service last year. Together, they hope to raise greater awareness of epilepsy programs among the general public in Ontario, though public education and awareness programs targeting parents of children with intractable epilepsy.
