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Parents

Parental coping and its role in predicting health-related quality of life in pediatric epilepsy

Psychosocial difficulties are known to greatly impact the health-related quality of life of a child with epilepsy. Parental coping is a unique aspect of having a child with epilepsy that has not been examined in relation to health-related quality of life in the child with epilepsy until now. Parental coping with the condition is shown to be significantly related to the child’s health-related quality of life in a youth with epilepsy. Elevated feelings of helplessness, along with epilepsy severity, predict lower health-related quality of life. The study’s findings are the first to demonstrate the unique role of parental coping in on health quality among youth with epilepsy, and, they highlight the importance of providing support to the whole family during pediatric epilepsy treatment. Highli...

Epilepsy in Children

Epilepsy is the most common neurological disorder affecting children, and may be characterized by sudden, recurrent episodes of uncontrolled motor activity and, in some cases, impaired consciousness (seizures). Any condition that triggers disruptive electrical discharges in the brain can produce epilepsy. Although the underlying abnormality may not be correctable, seizures themselves can usually be controlled through drug therapy. There are a number of relatively benign genetic epilepsies of childhood, some but not all of which may be outgrown. Common Causes of Epilepsy Seizures may develop as a result of a head injury, brain infection, brain tumor, drug or alcohol withdrawal or intoxication, stroke, birth trauma or metabolic imbalance. In most cases, the underlying cause of a child’s epil...

Addressing Psychiatric Comorbidities in Pediatric Epilepsy

Children with a chronic physical illness have a substantially elevated prevalence of psychiatric illness. The odds of having a mental health disorder were 62% higher among children with vs without a chronic physical condition, even after adjusting for sociodemographic variables and access to health care, according to results from a study published in 2016.1 The risk for psychopathology is even greater among children who have chronic central nervous system (CNS) disorders. In children with epilepsy, various studies have reported a prevalence of mental health problems ranging from 16% to 77%, and a 3-fold to 9-fold risk compared with controls.2 In a recent study of children and adolescents age 10 to 19 years who had epilepsy, the most commonly observed comorbid psychiatric disorders were att...

HOW TO BE A “FRIEND” TO SOMEONE WITH A CHRONIC HEALTH CONDITION

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...

Partnering to improve patient-neurologist dialogue about epilepsy

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...

First test of anti-epilepsy surgeries in children shows dramatic benefit

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.

Interim Survey Results Demonstrate Impact on Siblings of Children Suffering from Severe Epilepsy

“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.”

When do I tell my children I have epilepsy?

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.

Data Lacking to Explain Why US Doctors Prefer Keppra to Treat Pediatric Epilepsy

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.

Health & Wellness: Detecting childhood epilepsy — it’s not their attention span

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.

A Chronic Childhood Illness Like Epilepsy Could Increase Risk of Adult Depression, Study Reports

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.

New UTHealth study focuses on treatment for epilepsy caused by tuberous sclerosis

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...