CASSIDY MEGAN MEETS HER MAJESTY THE QUEEN


Cassidy Megan, founder of Purple Day, presented flowers to Her Majesty The Queen during her visit to Nova Scotia, Canada this June.

"This is a once-in-a-lifetime opportunity." said Cassidy.

Cassidy was chosen to present The Queen with flowers because of her tireless efforts in encouraging worldwide support for people with epilepsy. Two years ago, she encouraged students to wear purple, the international colour of epilepsy, on March 26. Purple Day has since caught on around the world.

Read more: http://www.cbc.ca/canada/nova-scotia/story/2010/06/28/ns-halifax-queen-visit.html
Posted on July 12th, 2010 

 STUDY FINDS REMISSION LIKELY FOR IDIOPATHIC CHILDHOOD-ONSET EPILEPSY


Extended Follow-Up Finds Remission Likely For Idiopathic Childhood-Onset Epilepsy
15 Jun 2010
A study conducted by researchers in The Netherlands confirmed that children with idiopathic new-onset epilepsy have a significantly higher rate of remission than those with remote symptomatic epilepsy. Results of this study are now available online in Epilepsia, a journal published by Wiley-Blackwell on behalf of the International League Against Epilepsy.

According to the Epilepsy Foundation, a person is considered to have epilepsy when they have two or more unprovoked seizures. Epileptic syndromes can be either idiopathic (of unknown cause) or symptomatic of underlying brain damage or disease. In general, idiopathic forms have a better prognosis in terms of both seizure control and eventual remission than do symptomatic forms. While epilepsy can begin at any time of life, 50% of all cases are diagnosed before the age of 25 with many having initial onset in early childhood. Currently there are an estimated 326,000 children under the age of 15 with epilepsy in the U.S.

"Knowledge of the long-term outcome of childhood epilepsy is an important factor in treatment decisions," explained study leader Ada Geerts. Researchers indicate it is still largely unknown whether the long-term outcome of epilepsy is determined by its natural course or whether it can be modified by treatment. Whereas outcome in terms of remission or death can be determined easily, the long-range course of epilepsy is more difficult to describe. To address the need for studies with prolonged follow-up in a large cohort of patients, the research team evaluated the course and outcome of childhood-onset epilepsy in 413 children over a 15-year period.

The study commenced in 1988 with the team evaluating 494 children (aged 1 month to 16 years) who were newly diagnosed with epilepsy. The patients were followed for 5 years, and then contacted again by questionnaire 10 years later. A total of 413 responses were received. The mean age at onset of epilepsy was 5.5 years, and the mean age at last contact was 20.8 years. Etiology was idiopathic in 50.8%, remote symptomatic in 27.8%, and cryptogenic in 21.3%. The mean follow up was 14.8 years.

Two hundred ninety-three of 413 subjects (70.9%) had a terminal remission of at least 5 years at the end of the study (61.9% off antiepileptic drugs [AEDs]; 9.0% on AEDs). In contrast, epilepsy remained active in 30% of patients and became intractable in 10%, with the majority of those with active epilepsy or intractability having a non-idiopathic etiology. In patients with a favorable course, idiopathic etiology was predominant, and the mean longest remission during the first 5 years of follow-up was significantly higher than in all other groups. The researchers concluded that AEDs probably do not influence epilepsy course - they merely suppress seizures. Mortality was significantly higher only in those with remote symptomatic etiology.

Geerts concluded, "The long-term prognosis of epilepsy is favorable in the majority of children, especially for those with idiopathic etiology. It remains to be seen whether such a course is influenced by the treatment given, since childhood-onset epilepsy is often a benign self-limiting disorder and treatment proved to be ineffective in those with active epilepsy or intractability."

Article: "Course and outcome of childhood epilepsy: A 15-year follow-up of the Dutch Study of Epilepsy in Childhood." Ada Geerts, Willem F. Arts, Hans Stroink, Els Peeters, Oebele Brouwer, Boudewijn Peters, Laura Laan, and Cees van Donselaar. Epilepsia; Published Online: June 14, 2010 (DOI: 10.1111/j.1528-1167.2010.02546.x).


Posted on June 17th, 2010 

 STUDY: KETOGENIC DIET REDUCES SEIZURES


ScienceDaily (May 18, 2010) — 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 online April 30 in the journal Epilepsia.
See Also:
Health & Medicine

* Diet and Weight Loss
* Epilepsy Research
* Obesity

Mind & Brain

* Dieting and Weight Control
* Epilepsy
* Nutrition Research

Reference

* Epilepsy
* Gluten-free, casein-free diet
* South Beach diet
* Seizure

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.

The research was funded in part by the National Institutes of Health.

Co-investigators include Amanda Hong, Zahava Turner and Rana Hamdy, all of Hopkins.
Posted on June 8th, 2010 

 ANNUAL EPILEPSY CONFERENCE


Thanks to our partnerships with Sick Kids, Toronto Western Hospital and SACEC, our annual conference was a big success. Our heartfelt thanks go to our sponsors XLTEK and UCB for their support. For handouts of the topics presented in the conference, please contact Lise Schofield - lschofield@epilepsytoronto.org.
Posted on June 7th, 2010