Join Boston Children’s Hospital and the Boston Globe for a Twitter chat on epilepsy, today, Monday, August 13, at noon. Tweeters from inside and outside Boston Children’s will take questions and discuss the latest on epilepsy treatment, diagnosis and how families live with the condition. You can sign up for a reminder and tweet your questions in advance of or during the chat to @BeWellBoston; use the hashtag #EpilepsyChat.
This Twitter chat was inspired by a recent Boston Globe story covering the evolving field of epilepsy treatment. The article featured two Boston Children’s patients who have had their epilepsy treated with new surgery techniques.
Roughly 1 in 26 Americans will develop epilepsy at some point in their life—more than will have autism, AIDS or Parkinson’s disease. Epilepsy medications can’t control seizures in about one-third of these patients, making surgery a better option in many cases. But surgery has its own risks, and does little to shed light on what causes the electrical disturbances in patients’ brains that trigger seizures.
The Globe story follows Paul Barney, Brian Manning and their families and doctors at Boston Children’s as they navigate the hopeful—and occasionally frustrating—world of modern epilepsy treatment.
Improvements in [epilepsy] treatments have come slowly, as scientists have learned more about the brain and the possible causes of epilepsy, which range from brain damage to inflammation.
New medications are beginning to arrive that address the brain’s over-excitation in different ways, offering hope to patients who haven’t had success with existing drugs… And doctors are getting better at understanding seizure patterns. Some people are more likely to seize in the morning, some in the evening, some while they sleep.
“If you know when seizures are most likely to occur, you can strengthen the defense against them,” said Tobias Loddenkemper, an assistant professor of neurology at Boston Children’s who recently controlled one boy’s seizures by increasing his medication dose in the evening, when his seizures were more frequent.
For more information on how Boston Children’s is leading the way in epilepsy research, check out these stories:
What a whirlwind of a year. Since launching this blog in July, we’ve had more than 230,000 visitors, many of whom have left thought-provoking comments on our posts.
We’ve enjoyed bringing you personal stories and expert insight about current pediatric health topics, and we hope you continue reading us in 2010.
What were our readers most interested in this year? Our most widely read stories range from a video series about defeating a milk allergy to a news report about the discredited Baby Einstein videos. Did you miss any of our most popular posts? We revisit them below. …
For nearly 10 years, Kate suffered from severe epileptic seizures and lived with life-altering side effects from her many medications. In this video and in her first-person story below, Kate shares her story about how an experimental treatment has changed her life.
Thanksgiving of 1999 was going to be a great day. My mom was coming home from the hospital after having surgery, and our entire family would be together for a big dinner that afternoon. It was shaping up to be a great holiday—that is, until I had my first seizure. I had the seizure at about 7 a.m. but I don’t remember anything except waking up in the local emergency room with a terrible headache and not being able to move my left side. …
Last night, Frances Jensen, MD, senior associate in Neurology, was featured in a piece on 60 Minutes about the prevalence of epilepsy and the importance of funding research into its cure. Watch the piece here, then keep reading below as Jensen describes how epilepsy is often overlooked as a public health problem and how researchers like her are trying to stop it in its tracks. Also watch below as Jensen shows Katie Couric what an epilepsy looks like from a molecular perspective.
By Frances Jensen, MD
Last night, research by myself and my team was featured on 60 Minutes in a wonderful story about the impact that epilepsy has on the people with it and the challenges of getting the public – including the agencies that fund research – to pay the disease the attention it deserves.
I was excited to be part of this story because raising awareness about epilepsy is important on several fronts. Despite this disease being the third most common brain disorder (after stroke and dementia), the public, and even some health care providers, have little knowledge about it. Epilepsy is defined as repeated seizures, and this can happen at any point in a person’s lifetime due to an inherited condition, an illness or a brain injury of any kind. Seizures are due to out-of-control brain cell activity in a part(or even the whole) brain. Medications, and in severe cases even surgery, are needed to dampen this over-activity in order to prevent more seizures. …