Living with a serious health condition like epilepsy can have a mental and emotional impact. For that person, and a caregiver, staying positive may be very difficult but is an important part in the overall health plan. As a friend or caregiver here are a few tips: Help them stay positive and motivated by showing your support Many people living with a chronic disease feelings of helplessness, anxiety or depression. These feelings may make it harder for them to find the motivation to be proactive about managing their condition. You can give them a boost when they’re feeling down, help them develop an action plan, maybe you can help them do something they enjoy so they don’t feel so alone. Don’t allow them to be a shut-in When someone feels down often they want to be alon...
Digital Health Solutions, Child Neurology Foundation and Greenwich Biosciences begin work to create high-tech risk-screening tool Experts in academia, patient advocacy and the health care industry have begun a partnership to improve communication about epilepsy between pediatricians, pediatric neurologists and the families of pediatric patients. Epilepsy is a brain disorder that causes seizures. The Centers for Disease Control and Prevention reports that almost 3.5 million Americans had active epilepsy in 2015, including 470,000 children. In a 2017 guideline, the American Academy of Neurology urged health care providers to report risks associated with the condition to caregivers of children living with epilepsy. Those risks include sudden unexpected death in epilepsy, or SUD...
Brain surgery for children whose epilepsy is resistant to drug therapy can produce a 10-fold increase in the odds of being seizure-free after one year and can do it without affecting IQ, according to a new Indian study of 116 patients in The New England Journal of Medicine Seventy-seven percent of the children were free of seizures at one year after the surgery, compared with seven percent in a control group of youngsters who received medical therapy alone while waiting for surgery. Behavior and quality of life also improved.
“In a recently conducted survey by the Dravet Syndrome Foundation, 74 percent of caregivers expressed concerns about the emotional impact on siblings of children with Dravet syndrome, and the interim results from the Sibling Voices Survey are a significant advancement in our understanding of the far-reaching implications that severe childhood epilepsies have on the lives of siblings and loved ones,” said Nicole Villas, President & Scientific Director of the Dravet Syndrome Foundation Board of Directors. “We are optimistic that the insights gained from the Sibling Voices Survey will assist in the development of tools to help families, and we are grateful for Zogenix’s dedication to addressing the unmet needs of this patient community.”
you know what a grand mal seizure is? I found out when I was eight years old. I also found out how it felt after having one…a mouth being full of swollen tongue, the taste of blood, and the feeling of being underwater with a throbbing headache. As with most epileptics, doctors have no idea why I have it or what caused it. Mine is not genetic; it may have resulted from one of the many times I thwacked my head as a kid. I liked to hang upside-down on the monkey bars a lot. No surprise that my stampeding hippo brand of grace emerged early, and that I frequently fell from exactly that upside-down position.
Doctors have several anti-seizure options to treat epilepsy, but little data exists to show which of these treatments is best for children. Nevertheless, according to a recent study on therapies prescribed for children under 3 with epilepsy, doctors in the U.S. appear to prefer Keppra (levetiracetam) as either a first or second option for treatment.
Sometimes Shelby would be there, but not “all there.” At the dinner table, her parents and siblings would catch her “zoning out”; she’d stop paying attention to the conversation and need to be jostled back to focus. They’d chide her for being so rude, then continue with their meal. It was just one of her quirks, they reasoned, and she’d grow out of it eventually.
Chronic childhood illnesses such as epilepsy could increase the risk that a person will develop clinical depression as an adult, according to new research. The study, “Research Review: Childhood chronic physical illness and adult emotional health – a systematic review and meta-analysis,” was published in the Journal of Child Psychology and Psychiatry.
A clinical trial of a drug that researchers hope can prevent or delay the onset of epilepsy in children with tuberous sclerosis has begun at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth). The Houston site, one of just seven in the country, is led by Mary K. Koenig, M.D., associate professor and Endowed Chair of Mitochondrial Medicine in the Division of Neurology of the Department of Pediatrics at McGovern Medical School at UTHealth. “It could potentially be a game-changer for epilepsy in general as it is the first trial ever aimed at preventing seizures from developing in a vulnerable population,” Koenig said. Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, including the...
A 15-year follow-up study of young adults with epilepsy found that those with uncomplicated epilepsy who were seizure-free for five years or more did as well as their siblings without epilepsy in measures of education, employment, family arrangements and driving status. Youth with complicated epilepsy had worse social outcomes and were less likely to drive, even if living without seizures. Results were published in the journal Epilepsia.
As technology advances, the range of options has grown! I have had many caregivers, parents and loved ones, ask me over the years what kind of Medical Alert/Monitoring Systems are there for someone with epilepsy. Yes, some do work for a person with epilepsy. There are a wide range of them today you can research and look at from personal emergency response systems, sleep monitors, watches and more that can offer piece of mind.
A new study published in Epilepsia found that although most newly diagnosed cases of epilepsy in older adults are treated appropriately with monotherapy, only half of those patients receive treatment within the recommended time frame, and a substantial portion were prescribed older antiepileptic drugs (AEDs) despite recommendations to use newer AEDs in this population.