Patients with neurological disease likelier to die after COVID?

Patients with neurological disease likelier to die after COVID?

University of Alberta study also shows higher numbers of new neurological disorder diagnoses among people with pre-existing conditions in the months after they have COVID.

People with neurological disease have a greater chance of death after contracting COVID-19, according to a new U of A study. The research also confirms a higher risk of developing new neurological disorders after COVID infection.

“For those who have neurological diseases — if you have Parkinson’s, if you have dementia, if you have a seizure disorder — you should seriously consider getting a vaccine,” and carefully monitor symptoms after contracting the virus, says neurology resident Candace Marsters, first author on the paper published recently in the journal Brain.

The study is the first to look at a large population of people previously diagnosed with disorders such as dementia, Parkinson’s, encephalopathy and epilepsy — as well as those with a history of stroke or seizures — before and after contracting COVID.

Marsters says her team — which includes Faculty of Medicine & Dentistry researchers Grace Lam, Christopher Power, Jeffrey Bakal and Finlay McAlister — had access to a huge dataset that included 350,000 Alberta patients who tested positive for COVID in the first year of the pandemic.

The team compared symptoms emerging in the acute phase of the illness, i.e., the first seven days to three months after infection, to those emerging between three months and nine months after infection.

The findings align with other studies that show an increased mortality rate during the COVID-19 pandemic among people with premorbid neurological conditions, Marsters says. She points out that — while her team found an association between COVID infection and neurological disease mortality — they were not able to establish causation.

Marsters’ study also confirms others that show COVID infection can affect the brain and nervous system — including incidence of encephalopathy, dementia, seizure/epilepsy, brain fog and myelitis — within three months of a positive COVID test. Her team also found a higher incidence of inflammatory myopathy and coma within nine months of infection.

The study says that, since the risk of being diagnosed with a neurological disease continues for an extended period after a COVID infection, it “warrants heightened awareness of these disorders during medical follow-up.”

In June of 2021, the U of A opened the Long COVID Clinic, the first of its kind in Alberta, for people who suffer symptoms that persist at least 12 weeks beyond the original COVID-19 diagnosis.

Many patients treated at the clinic have complained of myriad neurologic symptoms, says Maeve Smith, co-director of the clinic. They include persistent loss of sense of smell and taste, nerve pain and weakness, insomnia and neurocognitive dysfunction — problems with short-term memory, concentration and focus.

“Patients are often unable to return to work because their physical and cognitive function isn’t where it needs to be to function at previous levels,” says Smith. “Or they have to find a daycare because they can’t run around after their toddler.”

The new research “demonstrates that COVID-19 continues to burden health-care systems,” say the study’s authors. They write that their findings might convince people at higher risk for complications to seek vaccination or, if they catch COVID, to seek medical attention such as antiviral therapy sooner.

The study was supported by the Canadian Institutes of Health Research, the Alberta SPOR SUPPORT Unit and Christopher Power’s Toupin Chair in Neurocognitive Disorders.

 

Source: ualberta.ca, Geoff McMaster

Charities call for more social support for people with epilepsy

Charities call for more social support for people with epilepsy

A coalition of epilepsy charities and organizations has produced a new toolkit to enhance social support for people with epilepsy.

Epilepsy can have a significant impact on quality of life, yet social support and outreach is not available in all areas of the UK. The toolkit, funded by the Scottish government, therefore aims to improve and expand social support for people with an epilepsy diagnosis in order to better the lives of people with the condition.

The impact of epilepsy on quality of life

Epilepsy is one of the most common serious neurological conditions globally, with around 626,000 people affected in the UK.

The condition is common among people with learning disabilities, with around a third who have a mild to moderate learning disability having frequent seizures.

People with epilepsy often have co-morbidities, and a European study of people with epilepsy found they had higher rates of high cholesterol, type 1 diabetes, osteoporosis and migraine than control groups.

They are also more likely to have poor mental health (including mood and anxiety disorders), difficulty sleeping and some impairment in cognitive function and memory. Studies also show people with epilepsy find it more difficult to find and stay in work, with people in the most deprived areas in the UK twice as likely to have epilepsy as those in the least.

The importance of social support for people with epilepsy

Commissioning social support for people with epilepsy can make a significant difference to people’s quality of life and wellbeing, as it recognizes that epilepsy has an impact on an individual beyond the occurrence of seizures.

Types of social support vary, but it often includes providing a person with resources and knowledge and developing skills and confidence to live well and safely with epilepsy and self-manage their condition. Other types of support include:

  • Peer support meetings and activities, hosted by a support worker
  • Epilepsy self-management courses, delivered online or in person
  • One-to-one support from a support worker, or through phoneline services
  • In person or online counselling accessed through an epilepsy support organization.

While social and clinical support should remain separate, they can also complement each other as part of a joined up approach.

Providing both types of support not only benefits the patient but can also save the health service money, as costly interventions at later stages of the condition can be avoided.

The toolkit outlines further context and information on why commissioning social support is so vital for people with epilepsy, as well as explaining how health leaders can begin to commission these services in their local area.

The need for more holistic care and support

Jason Leitch, National Clinical Director of The Scottish Government, said: “The evidence tells us that people whose epilepsy is not controlled will have poorer outcomes than the rest of the population – they are less likely to have a job, more likely to be socially isolated, more likely to have mental health problems and will usually have higher mortality.

“However, where people can access a supportive environment, together with the appropriate clinical input, then outcomes will improve. That is why this resource is so helpful. It outlines the case for providing more holistic care and support and encourages partnership between Health Boards and Local Authorities to work with the rich tapestry of third sector providers to deliver holistic support for people with epilepsy.

“Service provision in Scotland just now is uneven – but if we can encourage collective action, we can ensure that everyone with epilepsy in Scotland will receive the right support at the right time.”

Types of social support vary, but it often includes providing a person with resources and knowledge and developing skills and confidence to live well and safely with epilepsy and self-manage their condition. Other types of support include:

  • Peer support meetings and activities, hosted by a support worker
  • Epilepsy self-management courses, delivered online or in person
  • One-to-one support from a support worker, or through phoneline services
  • In person or online counselling accessed through an epilepsy support organization.

While social and clinical support should remain separate, they can also complement each other as part of a joined up approach.

Providing both types of support not only benefits the patient but can also save the health service money, as costly interventions at later stages of the condition can be avoided.

The toolkit outlines further context and information on why commissioning social support is so vital for people with epilepsy, as well as explaining how health leaders can begin to commission these services in their local area.

The need for more holistic care and support

Jason Leitch, National Clinical Director of The Scottish Government, said: “The evidence tells us that people whose epilepsy is not controlled will have poorer outcomes than the rest of the population – they are less likely to have a job, more likely to be socially isolated, more likely to have mental health problems and will usually have higher mortality.

“However, where people can access a supportive environment, together with the appropriate clinical input, then outcomes will improve. That is why this resource is so helpful. It outlines the case for providing more holistic care and support and encourages partnership between Health Boards and Local Authorities to work with the rich tapestry of third sector providers to deliver holistic support for people with epilepsy.

“Service provision in Scotland just now is uneven – but if we can encourage collective action, we can ensure that everyone with epilepsy in Scotland will receive the right support at the right time.”

 

Source: learningdisabilitytoday.co.uk, Lauren Nicolle

Ketogenic diet boosts mental health: Study reveals reduced stress and improved mood

Ketogenic diet boosts mental health: Study reveals reduced stress and improved mood

In a recent study published in the journal Nutritionresearchers at Northumbria University, UK, explored the association between adherence to a ketogenic diet and various aspects of mental health, such as calmness, contentedness, alertness, and emotional well-being, in the general healthy population.

Background 

The ketogenic diet, high in fats and low in carbohydrates, shifts metabolism from glycolysis to fatty acid oxidation, providing alternative energy substrates for the body and brain. Historically used to treat epilepsy and explored in neurodegenerative and neurodevelopmental conditions, its effects on the general population are less studied. Further research is needed to clearly understand the long-term psychological impacts of the ketogenic diet across diverse populations and conditions.

About the study 

The present study involved two cohorts, each recruited through opportunity sampling on social media platforms, adhering to ethical standards set by Northumbria University and the Declaration of Helsinki. All participants provided informed consent before data collection began.

In cohort 1, individuals were recruited from February to October 2021. Participants in this group completed two assessment tools online: the Perceived Stress Scale (PSS-10) and the Bond-Lader visual analog scales (BL-VAS). The PSS-10 assessed general perceptions of stress, with scores from 0 to 40, reflecting varying stress levels. The BL-VAS measured mood through 16 opposing mood pairs, providing scores on alertness, contentedness, and calmness, using a sliding scale from 0 to 100.

Cohort 2 was assembled from January to July 2022 and used different tools for psychological assessment: the Depression Anxiety Stress Scale (DASS-21) and a 3-item loneliness scale. The DASS-21 includes three subscales for depression, anxiety, and stress, each scored on a severity scale from 0 to 3. The loneliness scale, rated from 1 to 3, helped identify levels of loneliness among participants.

Both cohorts used an online platform to share the same demographic, socioeconomic, and dietary data collection methods. Participants reported on a range of variables, including dietary habits assessed via a short-form food frequency questionnaire. This enabled the comparison of dietary patterns between those on ketogenic diets and other diets, factoring in the frequency of consumption of ketogenic-friendly and non-ketogenic food items. The data were analyzed for various psychological and dietary metrics, examining differences and correlations within and between the groups.

Study results 

In the study, cohort 1 initially recruited 361 participants, though exclusions were made for various reasons, including lack of consent and incomplete data entries, resulting in 260 participants completing the PSS-10. A further reduction occurred during the transition between survey platforms, leaving 147 participants who completed the BL-VAS. This cohort examined the perceived stress and mood variations between those on a ketogenic diet and those on other diets.

Cohort 2 began with 399 participants and was reduced to 276 after similar exclusions. This cohort utilized the DASS-21 and a 3-item loneliness scale to evaluate psychological well-being.

In terms of demographics and socioeconomic factors, Cohort 1 displayed significant age and Body Mass Index (BMI) differences between the ketogenic and other diet groups. The ketogenic participants were generally older and had a higher BMI. Notable findings included higher instances of high blood pressure among ketogenic diet participants. Dietary patterns revealed that those on the ketogenic diet consumed “ketogenic-friendly” foods more frequently and “non-ketogenic” foods less frequently than their counterparts.

Cohort 2 showed similar age and health distinctions, with ketogenic participants again being older but with no significant differences in BMI between the groups. Health ratings and dietary habits followed similar patterns to Cohort 1, with ketogenic participants reporting better subjective health and adhering more strictly to ketogenic food guidelines.

Psychologically, Cohort 1 findings indicated that participants on a ketogenic diet reported better mood and lower stress levels than those not on the diet, with significant differences in alertness, contentedness, and calmness. These differences persisted even when adjusting for demographic and health-related covariates.

Cohort 2 also found that participants on a ketogenic diet reported lower levels of depression, anxiety, stress, and loneliness. However, the improvements in loneliness were not statistically significant when adjusting for covariates.

Additionally, the length of adherence to the ketogenic diet showed positive correlations with psychological benefits in both cohorts. However, the actual level of ketosis measured did not significantly correlate with psychological outcomes, suggesting that the duration of dietary consistency might be more influential than the immediate metabolic state.

Conclusions

To summarize, the study hypothesized that a ketogenic diet would enhance psychological well-being, which was supported by the findings. Participants on the diet reported significantly better calmness, contentedness, alertness and reduced stress, depression, and anxiety. Although loneliness improvements were insignificant after adjusting for demographics, the diet’s length correlated with increased benefits. Furthermore, the study suggests that a ketogenic diet may improve mental health by mechanisms similar to anxiety medications.

 

Source: news-medical.net, Vijay Kumar Malesu

Antiseizure medications can produce life-threatening reactions

Antiseizure medications can produce life-threatening reactions

Molecular tests and other screening tools can lessen the risk of potentially fatal reactions to antiseizure medications that millions of Americans take for epilepsy and other conditions, but skin rashes still require speedy medical attention, according to research from Rutgers Health.

Rashes are a common side effect of antiseizure medications, occurring in 2 percent to 16 percent of patients, depending on which of 26 Food and Drug Administration-approved medications they use.

Although most rashes indicate nothing serious, roughly 5 percent indicate life-threatening reactions. The FDA recently issued a warning about serious reactions to two antiseizure medications: levetiracetam and clobazam.

“Dangerous reactions are rare, but patients and caregivers should still understand the risk and how to respond if things happen,” said Ram Mani, chief of the adult epilepsy division at Rutgers Robert Wood Johnson Medical School and lead author of the study published in Current Treatment Options in Neurology.

“Patients should seek medical treatment if rashes develop rather than waiting for them to disappear,” Mani said. “If symptoms are mild, they can contact their neurologist or primary care physician, but serious symptoms like a high fever warrant a trip to the emergency room or a 911 call.”

The proper antiseizure medication can eliminate epilepsy symptoms in 70 percent of patients and ease them in most others. Such medications also help many patients with bipolar disorder, anxiety, migraines and neuropathic pain.

The new study synthesizes published data on individual antiseizure medication, distinguishes the different rashes such medications can trigger and explains how to treat each one.

Factors that increase the risk of severe reactions include the use of aromatic antiseizure medications, rapid dose escalation, genetic predisposition to reaction and the simultaneous use of other medicines that affect drug metabolism. Women less than age 50 and boys under 10 also experience more frequent reactions, as do people with diseases such as HIV or lupus or those undergoing treatments such as radiation therapy that increase or decrease immune activity.

“Patients who react to one medication are more likely to react to others, particularly others in the same drug class, but with 26 FDA-approved options, we can typically find each patient an effective treatment with minimal side effects,” Mani said.

Antiseizure medications can trigger at least 10 distinct rash types. Reactions such as a fixed drug eruption—which is characterized by a small number of bumps—can begin within hours of the first injection, while other skin rashes, such as lichenoid drug reactions, can occur after the patient has been using a medication for years.

The most common reaction, by far, is called morbilliform exanthematous eruptions. These typically occur in the first two weeks of treatment onset and blanket the torso (and often the limbs) with small bumps. Symptoms usually disappear without treatment a few weeks after patients discontinue whatever medication provokes them but can worsen for several days before they start improving.

Severe conditions, on the other hand, often require urgent treatment. The reaction known as Stevens-Johnson syndrome or toxic epidermal necrolysis—which produces fever, eye pain and detached skin—typically requires that victims receive inpatient care at a hospital burn unit.

Mani estimated that several thousand patients suffer severe reactions to antiseizure medications each year but added that numbers could decrease significantly if neurologists consistently put high-risk patients on low-risk medicines.

“I gave a talk on this topic at the American Epilepsy Society Conference last year, and I asked the 200 or so doctors in the room how frequently they perform the recommended [genetic] tests on patients of South Asian ancestry [the only group prone to the relevant genes] and only a handful raised their hands,” Rami said. “So there’s definitely room for improvement to increase patient safety.”

 

 

Source: medicalxpress.com, Andrew Smith, Rutgers University

Guideline Issued for People with Epilepsy Who May Become Pregnant

Guideline Issued for People with Epilepsy Who May Become Pregnant

A new guideline has been issued to help neurologists and other clinicians determine the best antiseizure medications for people with epilepsy who may become pregnant. The guideline is published in the May 15, 2024, online issue of Neurology®, the medical journal of the American Academy of Neurology (AAN), and was developed through a collaboration between the AAN, the American Epilepsy Society (AES) and the Society for Maternal-Fetal Medicine (SMFM). It was endorsed by the Child Neurology Society.

The guideline partially updates two 2009 AAN and AES guidelines on the management of epilepsy during pregnancy, specifically regarding malformations at birth and the development of children born to people with epilepsy.

“Most children born to people with epilepsy are healthy, but there is a small risk of pregnancy-related problems, partly due to seizures and partly due to the effects of antiseizure medications,” said author Alison M. Pack, MD, MPH, of Columbia University in New York City, a Fellow of the American Academy of Neurology and a member of the American Epilepsy Society. “This guideline provides recommendations regarding the effects of antiseizure medications and folic acid supplementation on malformations at birth and the development of children during pregnancy so that doctors and people with epilepsy can determine which treatments may be best for them.”

The guideline recommendations are based on a review of all available evidence on the topic. Risks can include major congenital malformations, or birth defects, fetal growth issues and neurodevelopmental effects such as autism or lower IQ scores.

The guideline states when treating people with epilepsy who may become pregnant, doctors should recommend medications and doses that optimize both seizure control and fetal development at the earliest possible opportunity before pregnancy.

During pregnancy, it recommends minimizing the occurrence of tonic-clonic seizures, seizures with full body spasms, to minimize risks to the parent and fetus. It also says stopping medications during pregnancy may increase the frequency of seizures, which may harm the parent and fetus.

For medications, the guideline recommends using lamotrigine, levetiracetam or oxcarbazepine when appropriate to minimize risk of major birth defects.

It recommends avoiding valproic acid, phenobarbital and topiramate when possible. To reduce the risk of poor neurodevelopmental outcomes, including autism spectrum disorder and lower IQ scores, the guideline recommends clinicians avoid prescribing valproic acid, when possible, to people with epilepsy who may become pregnant.

The guideline recommends that people with epilepsy who may become pregnant take at least 0.4 milligrams of folic acid daily before and during pregnancy to decrease the risk of neural tube defects and possibly improve neurodevelopmental outcomes. However, it notes further studies are needed to clarify the optimal dose and timing of folic acid supplementation.

“People with epilepsy who may become pregnant want to ensure the best health of their child while still managing and minimizing their seizures,” said Pack. “This is why it is important to discuss plans for pregnancy with your doctor before becoming pregnant and notify your doctor as soon as possible if you discover you are pregnant. Don’t stop or change your medications. Talk with your doctor about any concerns you have about your medications.”

There are some medications that did not have enough evidence to be evaluated and need more research about their associated risk.

The guideline was funded by the American Academy of Neurology.

 

Source: prnewswire.com, American Academy of Neurology

Artificial intelligence in epilepsy — applications and pathways to the clinic

Artificial intelligence in epilepsy — applications and pathways to the clinic

 

Abstract

Artificial intelligence (AI) is rapidly transforming health care, and its applications in epilepsy have increased exponentially over the past decade. Integration of AI into epilepsy management promises to revolutionize the diagnosis and treatment of this complex disorder. However, translation of AI into neurology clinical practice has not yet been successful, emphasizing the need to consider progress to date and assess challenges and limitations of AI. In this Review, we provide an overview of AI applications that have been developed in epilepsy using a variety of data modalities: neuroimaging, electroencephalography, electronic health records, medical devices and multimodal data integration. For each, we consider potential applications, including seizure detection and prediction, seizure lateralization, localization of the seizure-onset zone and assessment for surgical or neurostimulation interventions, and review the performance of AI tools developed to date. We also discuss methodological considerations and challenges that must be addressed to successfully integrate AI into clinical practice. Our goal is to provide an overview of the current state of the field and provide guidance for leveraging AI in future to improve management of epilepsy.

Key points

  • Artificial intelligence (AI) has the potential to maximize the value of data collected throughout the management of epilepsy, including neuroimaging and electroencephalography data, electronic medical records, and data from medical devices.
  • Machine learning dominated early applications of AI in epilepsy, but deep learning approaches have become increasingly popular.
  • Despite development of many AI tools with potential for the diagnosis and management of epilepsy, few have been implemented in clinical practice.
  • Collaborative efforts, including sharing of data and expertise, among researchers and clinicians are essential to realize the full potential of AI in epilepsy management.
  • Methodological and ethical considerations are pivotal for integrating AI into routine epilepsy management.
  • Future advancements in AI require robust clinical trials and ethical frameworks to ensure efficacy and patient safety in epilepsy treatment.

 

Source: nature.com, Alfredo Lucas, Andrew Revell & Kathryn A. Davis

Climate Change May Worsen Health Conditions Like Dementia, Epilepsy, Depression, Study Suggests

Climate Change May Worsen Health Conditions Like Dementia, Epilepsy, Depression, Study Suggests

Extreme temperatures due to climate change may increase hospitalizations and deaths related to health issues like dementia, depression and epilepsy, according to a new study, which adds to previous research that found climate change has negative effects on human health.

  • The researchers looked at several nervous system conditions—including dementia, multiple sclerosis, epilepsy, stroke and migraine—and psychiatric disorders like schizophrenia, depression and anxiety, according to the study published Wednesday in the Lancet Neurology.
  • The risk of dying from a stroke and dementia increases with higher temperatures, while both extreme hot and cold temperatures are associated with a greater mortality risk for many mental health disorders like depression.
  • Researchers also found that as temperatures increase, hospitalizations related to dementia, migraines, several mental health disorders and multiple sclerosis also increase.
  • Dementia patients are more susceptible to harms of extreme hot and cold temperatures—like hypothermia and heat-related illnesses—and severe weather events because cognitive impairment limits their ability to adapt to environmental changes, according to the study.
  • The researchers believe several factors, including pollution, increased humidity and reduced sunshine exposure all impact mental health disorders, while neurological disorders and their treatments make it harder for the body to adapt to changing temperatures.
  • In order to manage, the study suggests patients with these disorders may have to adopt new behaviors to mitigate the effects of climate change, such as drinking more water, avoiding exercise while it’s hot or using more treatments.

KEY BACKGROUND

In addition to mental health and neurological disorders, health effects of climate change include worsened respiratory issues, heart disease, and increased risk of West Nile Virus, Lyme disease and water- and food-born illnesses. Since extreme weather events increase with climate change, health effects related to these events—including death, asthma and frostbite—falso increase, with different regions of the country being affected by climate change differently. The Centers for Disease Control and Prevention predicts the Midwest will have the largest increase in extreme temperature-related premature deaths than any other region, and the Southeast faces the greatest risk of mosquito-related illnesses since warmer temperatures increase mosquito populations. One new disorder climate change has caused is “climate anxiety,” which is the fear of climate change and its impacts on the world, and it mainly affects children and young adults, according to the study. “The whole concept of climate anxiety is an added, potentially weighty, influence,” Dr. Sanjay Sisodiya, lead study author and a professor at the University College London Institute of Neurology, said in a statement.

TANGENT

In April, the European Court of Human Rights ruled governments have the responsibility of stopping climate change and its negative impact on their citizens. This came after a group of older Swiss women filed a lawsuit saying they’re at a higher risk of death from heat waves because Switzerland hasn’t done enough to protect them from the effects of climate change. The court said it’s a violation of basic human rights if a government doesn’t work to fight against climate change through means like meeting its emissions targets. The court criticized Switzerland for not cutting its greenhouse gas emissions, and not implementing a framework to tackle climate change. Switzerland was ordered to pay roughly $87,000 in legal fees to the group of over 1,000 women, aged 64 years and up.

 

Source: forbes.com, Arianna Johnson

The uncharted waters of infant epilepsy

The uncharted waters of infant epilepsy

We all want to make sure nothing ever bad happens to our kids, but epilepsy is totally beyond the bubble of protection parents can make.

My daughter, Alma, was just three months old when she had her first seizure and I had never been that scared in my entire life. What I didn’t even consider at the time was that was just the first of seventeen she would have that year alone. Some would escalate so badly that she would stop breathing, her impossibly tiny body turning blue. Most of them would last for over half an hour and we would go to the emergency room to get medication that would force them to stop.

Now that she’s just two weeks away from turning three, Alma has taught our family an enormous amount when it comes to taking things for granted. Today she’s a hilarious, exhausting, beautiful toddler that is furious at me when I don’t let her drink the dog’s water. Her seizures are pretty well controlled now, but her first two years were a very different story.

Watching your baby in physical distress and not being able to do anything at all about it is literal torture. And on top of the chaos, we came up against so many barriers to access the care she desperately needed.

There’s limited availability of medications specifically tailored to manage severe forms of infantile epilepsy, so we quickly joined the chorus of families calling for greater access to medications for children like Alma. Currently, there are six anti-epileptic drugs (AEDs) available on the PBS (Pharmaceutical Benefits Scheme) without prescribing restrictions. Other PBS-listed medicines for epilepsy are limited for use in certain clinical circumstances.

In March this year, the medications Alma needs became available for 60-day prescriptions; it will be an absolute game-changer in both the cost and time constraints associated with frequent visits to the chemist and GP.

One of the things I’m really proud of – that Alma has given us – is our commitment to advocating for accessible and equitable care for all people with epilepsy, regardless of age or circumstance. Every child deserves the chance to live a life free from the grip of seizures, and it is our collective responsibility to ensure that no family is left behind.

We know that we’re in the lucky group, my husband and I both have stable jobs that have flexibility for care built in, and Alma’s health is pretty stable now, but it’s something we have to constantly think about. Vacations are planned around proximity to a good hospital, Alma won’t be able to go to the same school as her two big brothers, there’s been a lot of frustration navigating bureaucratic hurdles in pursuit of the right treatment.

While epilepsy is usually hereditary, neither my husband Mark or I had any experience of it before our baby girl was born. We’ve now come to believe that Mark’s mother — who died when he was very young – potentially also had epilepsy, but it’s wild that it would skip a generation. Like nearly everything about this journey, it makes no sense.

We get through with the mindset that while epilepsy may be a formidable foe, it is not insurmountable. We talk about it openly and honestly with our two older boys and Alma. She doesn’t really get that she’s any different to other kids, but she also thinks that her aunty lives in the fridge so we’re not too worried about her comprehension of the situation just yet.

We’ve also found some amazing groups online through Health Direct and Epilepsy Action Australia and now have two Whatsapp groups with other parents with similar struggles – who would have guessed that there are actually funny memes about epilepsy? Definitely not me, but there are.

If I was going to give anyone with a newly diagnosed baby advice it would probably just be a good routine will save everyone a lot of stress, especially when it comes to bedtimes. Sleep deprivation and exhaustion is Alma’s number one trigger so we are super strict about naps and bedtime.

Alma’s neurologist has a lot of hope that she may actually grow out of seizures all together eventually, but we’ve made a conscious decision to just leave that up to the future. Her epilepsy has no bearing on how much we love her, she’s the absolute light of our lives. But I will never give in to her about the dog’s water bowl.

 

Source: bodyandsoul.com.au, Hannah Levin

Impact of antiepileptic medications and sex hormones on maternal and child outcomes in epilepsy

Impact of antiepileptic medications and sex hormones on maternal and child outcomes in epilepsy

Studies show that sex steroid hormone concentrations significantly increase throughout the duration of pregnancy. These concentrations and their neuroactive steroid metabolites may influence fetal neurodevelopment and seizure control among pregnant women with epilepsy. Enzyme-inducing (EI) antiseizure medications (ASMs) have been known to alter sex steroid hormone concentrations in the nonpregnant state. In a recent analysis of the MONEAD study presented at the 2024 American Academy of Neurology (AAN) Annual Meeting, held April 13-18, in Denver, Colorado, EI-ASMs did not significantly affect progesterone and estradiol concentrations, 2 endogenous steroid hormones, in pregnant women with epilepsy.

Conducted by Paula Emanuela Voinescu, MD, PhD, MONEAD is a prospective, observational, multi-center study of pregnant women with epilepsy who were enrolled no more than 20 weeks of gestation. Investigators measured serum progesterone, estradiol, and estrone concentrations at enrollment, at trimesters 2 and 3, and delivery. Participants were categorized into the EI-ASM group, where they were on at least 1 EI-ASM, (n = 30), or nonEI-ASM group (n = 169). Estrone concentrations for the EI-ASM group were consistently lower, most notably in the second (median: 1572pg/mL [IQR: 621, 2690] vs 3030 [1820, 5040]) and third trimesters (3025 [1460, 4510] vs 5095 [3605, 7025]).

Voinescu, director of the Women’s Epilepsy Program at Brigham, had a conversation with NeurologyLive® at the meeting to discuss how different antiepileptic drugs influence the concentration of sex hormones in pregnant women with epilepsy. She also spoke about the correlations that exist between sex hormone levels and seizure outcomes in women with epilepsy. In addition, Voinescu, who also serves as an assistant professor of neurology at Harvard Medical School, talked about how neuroactive steroids might affect the neurodevelopmental outcomes of children born to mothers with epilepsy.

For those who are interested in learning more about your presentation, could you provide a brief overview of the data?

Paula Emanuela Voinescu, MD, PhD: These data come from a study called MONEAD, which stands for maternal outcomes and neurodevelopmental effects of antiepileptic drugs. It looks both at maternal outcomes and children outcomes for women, mothers, with epilepsy. It was conceived by Kimford Meador, MD, who is now a professor of neurology and neurosciences at Stanford University, and Page B. Pennell, MD, FAES, who was my research mentor at Brigham and Women’s but is now the Henry B. Higman Professor of Neurology at the University of Pittsburgh School of Medicine. This study in particular is looking at the sex hormone concentrations for those mothers with epilepsy enrolled in the study.

The motivation behind the study—we know that sex hormones and their metabolites, the so-called neuro active steroids, can influence neuronal excitability. We also know that some antiseizure medications, specifically those called EI medication, can affect the levels of sex hormones, most obviously their metabolites. The reason behind it is to see if sex hormones are associated with seizure outcomes in this patient population. The study is only in the first phase of looking at how the sex hormones concentration differ between women who are on EI medications versus those who are on nonEI medication or no medication at all. The first findings, as shown in my abstract and presentation, are that EI medication indeed decreased the concentration of some sex hormones. Interestingly, it did not decrease the concentration of progesterone, but it did decrease the concentration of estradiol and estrone.

What do you think are the implications of these results for this patient population?

That’s going to be the next question for us to answer. Looking at the seizure outcomes and seeing whether there’s any correlation between seizures and subsequent levels is going to be another study to be done in the future. At the same time, we know that psychiatric comorbidities may have shared our neurobiology and sexual concentrations play a role in postpartum depression. Another analysis that’s being done is trying to understand if the level of sex hormones play a role for the prevalence of the psychiatric comorbidities in pregnant women with epilepsy.

These first phase only looked at few sets of sex hormones, but all neuroactive steroids could be measured. Another future study could look in more detail on those neuroactive steroids I was mentioning earlier to see whether there is any difference in how those models correlate with these maternal outcomes. I should also mention that there is some evidence that neurotic theories also influence neuronal development of children. MONEAD is a study that, as I mentioned, also looks at the children’s of mothers with epilepsy with thorough neurodevelopmental tasks. The cognitive performance of these children could be also analyzed—keeping in mind the mother’s sex hormone concentrations—to see whether those levels influence global concentrations influence the neurodevelopmental outcomes of their children. A lot of possible implications but unfortunately, I don’t have results to talk about any of them.

Do you believe there is a lot to look forward to with investigating these sex hormones in this patient population?

Definitely. MONAED is one of these studies that very thoroughly collected a lot of information about these patients. Many questions will hopefully be answered in the future.

Is there anything else you wanted to add about what you’re looking forward to in this realm of maternal health and epilepsy?

Studies like MONEAD, they just aren’t enough of them. We have over 30 medications and the information we have about their use in pregnancy is reliable for only less than a handful of patients. The data we accumulated was on 2 antiseizure medications, in particular lamotrigine and levetiracetam. The majority of patients in MONEAD are on these medications, but way less is known about some of the newer antiseizure medications. It’s important that this type of work is continued so that we have as good of an understanding of the other medications that we frequently use for our patients. We have no insight. Studies like this one that we talked about today may shed some insight into other ways in which medications may influence maternal and possibly fetal outcomes for pregnant women with epilepsy.

 

Source: contemporaryobgyn.net, Isabella Ciccone

How a stem cell transplant could help to stop epilepsy seizures

How a stem cell transplant could help to stop epilepsy seizures

A one-off ‘injection’ of stem cells could be an effective treatment for some patients with epilepsy.

The treatment is thought to help by increasing production of a brain chemical called gamma-aminobutyric acid (GABA), which calms down the electrical activity in the area of the brain that triggers epileptic seizures.

The first two patients to have the therapy, called NRTX-1001, had a greater than 95 per cent reduction in their seizures a year after having the injection, according to preliminary findings presented at the meeting of the International Society for Stem Cell Research in Boston last year.

Now data presented at the American Academy of Neurology last month revealed that the treatment has been successful in two more patients.

More than 630,000 people in the UK have epilepsy and, as a result of sudden bursts of electrical activity in their brain, experience seizures.

Current treatments include medication to change the levels of chemicals in the brain that control electrical activity.

But for 30 per cent of patients these drugs don’t work, according to the National Institutes of Health in the U.S. Surgery to remove a section of the brain that triggers the seizures is offered to some, but carries a risk of memory impairment and vision problems.

It’s hoped that the new therapy, developed by Neurona Therapeutics, a company based in California, could help those for whom medication doesn’t work and who may not want surgery.

The new injections contain cells derived from human stem cells, which can turn into any type of cell.

These are grown in a special medium in a lab to encourage them to turn into interneurons, a type of cell found in the brain that secretes GABA, which calms down the excitable nerve networks and electrical signals that trigger seizures.

Under general anesthetic, a needle, guided by an MRI scanner, is positioned into the part of the brain causing the seizures and the cells are released.

The patients go home the following day. They are also given immunosuppressant drugs for a year to ensure their immune system doesn’t reject the stem cells.

The therapy doesn’t work immediately because the transplanted cells need five to seven months to start producing GABA in sufficient quantities.

All the people in the recent trial, which began back in 2022, had a common type of epilepsy — mesial temporal lobe epilepsy.

While four have improved with the treatment, one has not — but none in the study group has experienced severe side-effects.

A larger study of 30 patients is being planned for next year.

Commenting on the research, Matthew Walker, a professor of neurology at University College London, said: ‘This new trial shows exciting preliminary results. It could provide an alternative to surgical interventions in this type of epilepsy and for those who do not respond to medication.’

 

Source: dailymail.co.uk, Thea Jordan

Sleep apnoea linked to late-onset epilepsy, study says

Sleep apnoea linked to late-onset epilepsy, study says

Sleep apnoea and low oxygen levels during sleep are linked to late-onset epilepsy, says a US study.

The researchers wanted to understand the relationship between sleep problems and late-onset epilepsy, building on previous small studies.

The team used sleep characteristics data on over 1,300 participants from the Sleep Heart Health Study. They also used Medicare claims to find those who developed late-onset epilepsy.

The results showed that people whose oxygen saturation fell below 80% during sleep were at a three-times greater risk of developing late-onset epilepsy. Normal oxygen saturation levels in humans should be between 96-100%.

Participants who subsequently reported a diagnosis of sleep apnoea between 2011-13 were also at a two-times higher risk of developing late-onset epilepsy.

The researchers said that these risk factors were independent of other comorbidities, like high blood pressure.

Dr Christopher Carosella, assistant professor of Neurology at Johns Hopkins University, led the study. He said finding a reversible cause for epilepsy is an “aspirational goal for epilepsy researchers or clinicians”.

“We hope this study might be a small first step in that direction and also an encouragement to evaluate and treat sleep disorders in patients with epilepsy.”

 

Source: epilepsy.org.uk, Kami Kountcheva

Neurologists Describe Childhood Absence Epilepsy as ‘Underrecognized’ but ‘Easily Diagnosed and Treated’

Neurologists Describe Childhood Absence Epilepsy as ‘Underrecognized’ but ‘Easily Diagnosed and Treated’

Expanding awareness of Childhood Absence Epilepsy helps early diagnosis and treatment

WASHINGTONMay 6, 2024 /PRNewswire/ — The subtlety of childhood absence epilepsy (CAE) seizures, coupled with their close association with learning and mental health difficulties, can delay diagnosis despite CAE being one of the most common pediatric syndromes in the United States, according to a new expert-led clinical proceedings paper from the Clinical Neurological Society of America.

Childhood absence epilepsy seizures are brief staring spells with loss of awareness that cannot be interrupted by voice or touch. Seizures can occur multiple times per day. CAE may go undiagnosed or misdiagnosed because it can be mistaken for ADHD or be difficult for parents, teachers and other caregivers to recognize. While CAE usually remits within two years of onset or by early adolescence, the impact on children’s social and emotional health can be long term.

The paper, Childhood Absence Epilepsy: An Underrecognized Condition, Yet Easily Diagnosed and Treated, is authored by four pediatric neurologists and calls for:

  • Improving awareness of the disease among parents, teachers, health care providers and the community at large;
  • Increasing understanding of its link to ADHD and other learning and mental health challenges; and
  • Improving access to diagnosis and treatment.

Expert Panelists:

  • Katy Lalor, MD (Clinical Proceedings Chair)
  • Allison Conravey, MD
  • Sudha Kilaru Kessler, MD
  • Elaine C. Wirrell, MD

Statement from Katy Lalor, MD, Clinical Proceedings Chair:

“Expanding awareness among the public of CAE is the first step to earlier diagnosis and treatment. And with a greater understanding of CAE’s link to ADHD and other learning and mental health challenges, we can reduce the burden of this disease and improve the short-term and long-term outcomes of these children.”

 

Source: prnewswire.com, Clinical Neurological Society of America 

Epilepsy patients to be offered ‘game-changing’ laser therapy in NHS rollout

Epilepsy patients to be offered ‘game-changing’ laser therapy in NHS rollout

Laser interstitial thermal therapy – LITT – targets the part of the brain causing seizures without the need for invasive surgery

The NHS will roll out a “game-changing” new laser beam therapy next month to help reduce seizures for patients with epilepsy.

The cutting-edge fiber optic laser therapy, known as laser interstitial thermal therapy (LITT), targets the part of the brain causing seizures without the need for invasive surgery.

Up to 50 patients in England each year whose epilepsy cannot be controlled by standard anti-seizure drugs will be eligible.

The treatment involves drilling a tiny hole to allow a 1.5mm-wide probe with a fiberoptic laser at the tip to be inserted into the skull. This reaches and destroys the epilepsy-causing brain tissue from the inside by heating it.

Using an MRI scanner, the clinical team navigate through the brain avoiding blood vessels and other critical structures. They also monitor the temperature of the surrounding areas to make sure healthy brain tissue does not overheat.

What is epilepsy?

Epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms.

Epilepsy can start at any age, but usually starts either in childhood or in people over 60. It is often lifelong, but can sometimes get slowly better over time.

According to the NHS, seizures can affect people in different ways, depending on which part of the brain is involved. Possible symptoms include:

  • Uncontrollable jerking and shaking, called a “fit”;
  • Losing awareness and staring blankly into space;
  • Becoming stiff;
  • Strange sensations, such as a “rising” feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs;
  • Collapsing.
  • Sometimes a person might pass out and not remember what happened.

The wound heals quickly, meaning patients can go home the next day with minimal risk of infection or other side effects and can usually return to work and other activities within a week, medics said.

The treatment is being offered at King’s College Hospital in London and The Walton Centre in Liverpool as specialist national hubs.

Laura Diable, 39, from Birkenhead, was one of the first patients with epilepsy to have LITT at The Walton Centre.

She said: “Since having the procedure nearly a year ago, I’ve not had one seizure. It’s made a huge difference to my quality of life. Before, the seizures were incapacitating me, leaving black spots in my memory. Thanks to LITT I’ve been able to get on with my life and worry less about my epilepsy.”

Consultant Neurosurgeon James Palmer, NHS England’s medical director for specialized services, said: “Not only will this world-leading technology help replace invasive surgery for patients, which can have a huge impact take months to recover from, it will also allow clinicians to better target the parts of the brain causing the epilepsy, which dramatically reduces the risks and helps cut patients’ recovery time both in and out of hospital.”

 

Source: inews.co.uk, Paul Gallagher

Glasgow woman raises thousands of pounds for Scottish charity

Glasgow woman raises thousands of pounds for Scottish charity

A WOMAN from Glasgow has reached a fundraising milestone for a Scottish charity after taking part in the Glasgow Kiltwalk.

Kimberley Burns has now raised more than £20,000 for the charity Epilepsy Scotland in just over five years of fundraising activities and events.

She reached the milestone after raising £2200 at the latest Glasgow Kiltwalk, where she and her mum walked 22.6 miles for the charity.

Burns said she was “buzzing” to have reached the milestone and that she was inspired to do so by her partner Grant.

She said: “I am totally buzzing I have reached the milestone of raising over £20,000 for such a great charity and helping to raise awareness of the condition along the way.

“I thank everyone who has donated to my fundraising efforts, and I look forward to my next fundraising challenge!”

Burns began fundraising for Epilepsy Scotland in 2018 due to her partner, who was suddenly diagnosed with Juvenile Myoclonic Epilepsy nine years ago.

As a result of his symptoms, Grant lost his driving license and spent years trying to find the right combination of medicines to keep him seizure-free.

Burns said: “Since I have known Grant I would say he is an inspiration to anyone living with epilepsy, he has never once let it get the better of him.

“I was so inspired by Grant I realized I had to use my voice and action to advocate for people who have Epilepsy, or people caring for someone who has epilepsy.”

Over the years, Burns and her partner have reached out to Epilepsy Scotland for support, which inspired her to then raise money for the charity as a way of saying thank you.

The charity supports more than 58,000 people living in Scotland with epilepsy, as well as their families and carers.

Burns’s fundraising story began in 2018 when she took part in her first activity for Epilepsy Scotland, a zip slide across the river Clyde.

Since then, she has participated in and organized several fundraising activities including dog jogs, fire walks, charity football matches, and bake sales.

Her charity baking led her to start her own cake business, which she uses to help raise awareness and money for her fundraising events.

Commenting, Jane Roberts, fundraising manager at Epilepsy Scotland, said: “What Kimberley has achieved over the last few years is extraordinary.

“Her dedication, enthusiasm and infectious smile always brings joy to the office when she visits.

“I want to thank her deeply, on behalf of everyone at Epilepsy Scotland, for tirelessly fundraising and advocating on behalf of the charity.

“She truly is a gem and should be immensely proud.”

Find out more about Epilepsy Scotland here.

 

Source: thenational.scot, Lucy Jackson

Emergency Departments Frequently Miss Signs of Epilepsy in Children

Emergency Departments Frequently Miss Signs of Epilepsy in Children

A subtle type of seizure goes undetected two-thirds of the time in pediatric emergency departments, a new study shows.

The work focuses on “nonmotor” seizures, which cause children to zone out and stare into space or fidget. They may also feel sudden changes in emotions, thoughts, or sensations, in contrast to motor seizures, which cause muscles to move in abrupt, jerking motions.

According to the authors, improving recognition of nonmotor seizures may speed up the diagnosis and treatment of epilepsy in children, who often struggle to describe their symptoms to physicians, or are not asked to do so. Brief nonmotor episodes may happen for years before motor convulsions or other more severe and obvious symptoms appear.

Led by researchers at NYU Langone Health, the analysis involved 83 preteens and teens in treatment for epilepsy, a chronic neurological disorder in which groups of brain cells send out excessive bursts of electrical signals and trigger seizures. To be diagnosed with the condition, a patient must have experienced a minimum of two seizures with no apparent cause. Because seizures are easy to overlook or confuse for anxiety and panic attacks, the authors say it is critical that healthcare providers screen for signs of nonmotor seizures.

To better understand how well such nonconvulsive episodes are spotted by physicians and patients alike, the researchers first explored how likely a child was to seek medical attention for their symptoms before they were aware that they had epilepsy. According to the findings, only 4 children went to the emergency department specifically for symptoms of a nonmotor seizure, although the study team later determined that 44 had a history of such issues. By contrast, 21 children visited the hospital for their first-ever motor seizure, out of 39 total.

Even when treatment was sought, however, it was unlikely that their symptoms were properly diagnosed, the study authors report. Their analysis showed that emergency department physicians correctly identified only 33 percent of first-time nonmotor seizures, compared with 81 percent of first-time motor seizures.

“Our findings highlight the need for better recognition of epilepsy in adolescents,” said study lead author Nora Jandhyala, BS. “Clearly, there is a large gap in emergency department screening that may be delaying lifesaving treatment,” added Jandhyala, a medical student at NYU Grossman School of Medicine.

Notably, the findings further revealed that while almost 40 percent of the teens turned out to have a history of nonmotor seizures, none were asked about them during their hospital visit. As a result, they were no more likely to be diagnosed and treated for epilepsy than those experiencing a motor seizure for the first time.

A report on the findings was published online May 1 in the journal Neurology.

According to the Centers for Disease Control and Prevention, epilepsy is one of the most common brain disorders in children, affecting 470,000 under age 17 in the United States. Untreated seizures can cause permanent brain injury, memory loss, and even death, and delays in diagnosis have been shown to increase risk for these concerns, the authors say. Past research had already revealed that nonmotor seizures are less likely to be noticed by physicians than their more-overt counterparts. However, how often this specifically occurs in young people had until now remained unclear.

For the research, the team analyzed medical records of boys and girls between the ages of 12 and 18 who had begun treatment for epilepsy within four months of the study. Fifty-eight had visited either a pediatric or general emergency department prior to their diagnosis. This data was collected as part of the Human Epilepsy Project, a multicenter partnership of 34 hospitals throughout the United States, Europe, and Australia designed to better understand the disorder and improve its treatment.

In the current study, researchers evaluated the children’s seizure history, traced their epilepsy diagnosis, and uncovered if or when they were admitted to the hospital and referred to a neurologist.

“Encouraging healthcare workers to routinely ask patients about signs of nonmotor seizures may offer a simple way to spot epilepsy before it worsens,” said study senior author and neurologist Jacqueline A. French, MD.

Dr. French, a professor in the Department of Neurology at NYU Grossman School of Medicine, adds that the team is now exploring ways to boost epilepsy recognition among members of the public as well, and hopes that symptoms become common knowledge, as the symptoms of heart attack and stroke are already.

Dr. French, who is also a member of NYU Langone’s Comprehensive Epilepsy Center, notes that since the study data did not include young children, who may face even greater difficulties in communicating their experiences, nonmotor seizures may be even more common than reported in the current study.

Study funding was provided by NYU Langone.

 

Source: nyulangone.org, Shira Polan

Low oxygen during sleep and sleep apnea linked to epilepsy in older adults

Low oxygen during sleep and sleep apnea linked to epilepsy in older adults

Findings provide further insight into the complex relationship between sleep disorders and epilepsy.

Sleep apnea and low oxygen levels while sleeping are associated with epilepsy that first occurs after 60 years of age, known as late-onset epilepsy, according to a new study funded by the National Institutes of Health (NIH) and published in Sleep. The link was independent of other known risk factors for late-onset epilepsy and sleep apnea including hypertension and stroke. The findings may help to better understand the relationship between sleep disorders and late-onset epilepsy, as well as identify potential targets for treatment.

“There’s increasing evidence that late-onset epilepsy may be indicative of underlying vascular disease, or neurodegenerative disease, even potentially as a preclinical marker of neurodegenerative disease,” said Rebecca Gottesman, M.D., Ph.D., chief of the Stroke Branch at the NIH’s National Institute of Neurological Disorders and Stroke (NINDS), and an author on the study. “Compared to other age groups, older adults have the highest incidence of new cases of epilepsy – up to half of which have no clear cause. Sleep apnea is common among people with epilepsy, but the association is not well understood.”

Researchers, led by Christopher Carosella, M.D., assistant professor of neurology at Johns Hopkins University, Baltimore, identified cases of late-onset epilepsy using Medicare claims and analyzed sleep data from more than 1,300 participants in a study of sleep-disordered breathing and cardiovascular disease. They found that people whose oxygen saturation fell below 80% during sleep, a condition known as nocturnal hypoxia, were three times more likely to develop late-onset epilepsy compared to those who did not have similarly low oxygen levels. In addition, participants with self-reported sleep apnea in later life were twice as likely to develop late-onset epilepsy as those without the sleep disorder.

The degree of hypoxia during sleep was associated with late-onset epilepsy, independent of other co-occurring medical issues and demographic factors. The authors note that the study did not detect an association between the apnea-hypopnea index, a traditional measure of sleep apnea severity.

Sleep apnea is known to be a risk factor for poor brain health in other ways, including risk of stroke and dementia, but an association with epilepsy had not been described previously. The link to hypoxia suggests that repeated chronic exposure to low oxygen levels overnight might lead to brain changes that ultimately lead to risk of epilepsy. The study can’t determine whether treating or preventing sleep apnea might reduce the risk of epilepsy, but it does suggest that this may be an important potential target for reducing risk of late-onset epilepsy.

“Discovering a reversible cause for the development of any type of idiopathic epilepsy is an aspirational goal for epilepsy researchers or clinician,” said Dr. Carosella. “We hope this study might be a small first step in that direction and also an encouragement to evaluate and treat sleep disorders in patients with epilepsy.”

Because sleep apnea can have cardiovascular an brain health-related effects, the findings may also ultimately help to identify individuals at risk for some of these other conditions, providing a potential opportunity for treatment and prevention.

Future studies are needed to assess whether treating sleep apnea in patients at risk for late-onset epilepsy may help prevent the onset of the disease.

NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

 

Source: nih.gov

Dogs bring people with epilepsy their medicine when they can’t do it themselves

Dogs bring people with epilepsy their medicine when they can’t do it themselves

If you have a complex form of epilepsy, a dog can help you, shows Valérie van Hezik-Wester in her dissertation. She researched whether having such a dog brings health benefits, and whether this care is also cost-effective for society.

What is your research about?

I followed 25 patients and their carer for three years. The study was commissioned by the Ministry of Health, Welfare and Sport (VWS). The ministry wanted to know whether the health benefits of a service dog for people with epilepsy outweighed the costs. This is because training a service dog is expensive, as they need to be in training for a very long time. During my research, participants kept track of how many seizures they had every day, and filled out a comprehensive questionnaire every three months. It included questions on the quality of life of the patient and the informal carer, but also on, for example, care costs incurred, and whether people went to work or called in sick, and how many hours of informal care a patient needs. These are all factors we can take into account when calculating whether a service dog is cost-effective. At the end of the study, we interviewed participants to ask them what their experiences were.

What are those auxiliary tasks that an epilepsy dog can perform for a patient?

The tasks the dog learns differs depending on the person, everyone has different needs. It is often important that the dog can push an alarm button if the patient has a seizure. That alarm can be linked to a carer, a sound system at home or work, or an external caregiver. A dog can also bring a bag of medicine, and place a patient in a stable side position to keep the airways clear.

Both tasks are useful in epileptic seizures as many people know them, where a patient falls to the ground and has convulsions. But there is a broad spectrum of epileptic seizures. There are also forms where the patient has a temporarily impaired consciousness but it is not apparent from their movements. In this case, the patient themselves do not realize they are having a seizure. A dog can then prevent the patient from continuing with daily actions that could suddenly become dangerous, such as climbing stairs, or crossing the road. During a seizure, people do not give their normal commands, so the dog knows something is up and blocks the road, for example.

What is the main finding of your research?

On average, the number of seizures decreased when there was a dog in the house. And the number of seizures decreased the longer the patient had the dog. After one year, patients’ seizures had declined by a third on average. That’s quite a lot. Especially since participants have had epilepsy for years and have already tried all kinds of treatments such as drugs, diets, surgeries and devices to reduce their seizures. We also saw that a service dog did not work for everyone. Some participants quit the study because training and walking a service dog had too great an impact on that person’s daily routine.

How do you explain this reduction in seizures?

There are different triggers of epileptic seizures: hormones, temperature, light. But the most important factor is stress. The most likely explanation is that epilepsy dogs cause patients to suffer less stress, reducing seizures. This may also explain why some study participants benefited more than others. It may be that the seizures of the patients who benefit less are triggered by something other than stress.

And, in the end, do the benefits of a service dog outweigh the burdens?

Yes, I had four different quality of life questionnaires and all four showed improvement. In particular, people scored better on questions about mental health and social and community functioning after having the service dog.

The service dog saves a lot of costs. For example, patients end up in hospital less often, and saw a healthcare provider less often. The dogs also save time for informal carers: before the service dog, they spent an average of one full day a week on caring tasks. And that does not even include supervisory time, which also decreased with a service dog.

What kind of impact on quality of life of patients and carers are we talking about?

Above all, participants felt more independent, free and safe with a dog. Patients and informal carers sometimes find themselves unwillingly stuck together due to a need for supervision. For example, there was a carer who loved gardening but found it too dangerous to be in the big garden and where she could not see her daughter. And the patient wanted more time to herself, and watch TV without her mother looking over her shoulder. Because of the service dog, the mother was willing to go into the garden without fear of something happening in her absence.

What did you like most about this research?

I liked that there were many methodological challenges in the study. For example, you cannot provide a placebo dog in a control group. So how do you then measure how well something works? And working with a small sample size is also difficult; in total I only had 25 participants. We solved that very creatively.

I also found the contact with the patients very special. I wasn’t actually trained for that, and it was quite exciting at the beginning. They sometimes had seizures in front of me, they shared emotional and difficult stories. That makes it very personal, which also makes it harder to remain objective. If it had turned out that a service dog would not be cost-effective, I would have had to support that.

And were there any low points?

The study almost failed because it was difficult to find subjects. It was difficult to remain critical when people wanted to apply who just did not meet the conditions, knowing that an extra subject made it more likely that the study could go ahead at all.

Also, during the course of the PhD process, my father passed away. He had a dog he loved, who lives with me now. The paw print of the dog is on the cover of my dissertation, as a tribute to the dog who took care of my father, and my father who took care of me.

Is your research going to ensure that epilepsy dogs will be reimbursed by insurers?

In other medical interventions, there is often a clear player who benefits when it hits the market. For example, if a pharmaceutical company develops a new drug it will go all out to get it reimbursed. An interest like that is lacking here. In the end, it is up to practitioners to engage with insurers. If that is going to happen, these research findings will come in handy.

How are the patients who participated in the study doing?

They were allowed to keep the service dog. The oldest is six years old. I hope there will be a compensation decision before the study’s dogs are retired.

 

 

Source: erasmusmagazine.nl/en

‘Breaking a promise’: California deficit could halt raises for disability workers

‘Breaking a promise’: California deficit could halt raises for disability workers

Families of people with intellectual and developmental disabilities say Gov. Gavin Newsom is reneging on a scheduled raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.

Citing California’s budget deficit, the Democratic governor wants to save around $613 million in state funds by delaying pay increases for a year for about 150,000 disability care workers. The state will forgo an additional $408 million in Medicaid reimbursements, reducing funding by over $1 billion.

Some lawmakers say this decision will increase staff turnover and vacancies, leaving thousands of children and adults with disabilities without critical services at home and in residential facilities. Disability advocates warn it could violate the Lanterman Act, California’s landmark law that says the state must provide services and resources to people with disabilities and their families.

Newsom is “breaking a promise,” said Felisa Strickland, 60, who has been searching for more than a year for a day program for her 23-year-old daughter, Lily, who has autism and cerebral palsy. “It’s creating a lot of physical and mental health problems for people, and it’s a lot of undue stress on aging parent caregivers like myself.”

Disability care workers, known as direct support professionals, provide daily, hands-on caregiving to help children and adults with intellectual and developmental disabilities, such as autism, cerebral palsy, and epilepsy, remain independent and integrated into their communities.

In California, more than 400,000 people with disabilities need accommodation, and this population, along with seniors, is increasing. It’s not clear how big the worker shortage is because the state hasn’t released workforce data. As the demand for these workers grows generally, experts predict a shortage of between 600,000 and 3.2 million direct care workers by 2030.

Advocates say California pays most providers from $16 to $20 an hour, which meets the state’s minimum wage but falls short of what some economists consider a living wage. In 2021, the state committed to raising wages after identifying a $1.8 billion gap between the rates received by nonprofits that contract with the state to provide care and the rates deemed adequate.

Thus far, the state has provided around half that total, most of which has gone to raising wages and benefits. Workers had been expecting one more increase, of $2-$4 an hour, in July, until Newsom proposed a delay.

Also, nonprofits say California has made it harder to compete for workers after raising wages in other service and health industries. Newsom approved a $20 minimum wage for fast-food workers that went into effect in April and he struck a deal last year with unions and hospitals to begin raising health care workers’ wages to a minimum of $25 an hour.

Ricardo Zegri said Taco Bell would pay him more than the $19 an hour he makes as a disability care worker in a supervisory position.

“Every paycheck, it’s a discussion at home about what bills we need to prioritize and whether it’s time to start looking for work that pays more,” said Zegri, who works a second job as a musician in the San Francisco Bay Area.

Newsom wants to preserve key health initiatives, including the state expansion of Medi-Cal to low-income immigrants regardless of legal status, and CalAIM, an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider. However, the rate delay for providing disability care is the largest savings in the Health and Human Services budget as Newsom and legislative leaders look to cuts, delays, and shifts in funding to close a deficit estimated between $38 billion and $73 billion.

Dozens of legislators from both parties are asking Newsom and legislative leaders to preserve the increase. Assembly member Stephanie Nguyen, a Democrat from Elk Grove, signed a letter supporting the raise. Although lawmakers are negotiating with the administration, she said reversing the decision to delay the pay boost is unlikely. Everybody “has to take a hit somewhere,” Nguyen said.

Krystyne McComb, a spokesperson for the Department of Developmental Services, said even though the state would lose federal matching funds this year, it would resume drawing funds when the state reinstates the plan in 2025.

The department did not respond to questions about how it plans to retain workers and fill vacancies.

Newsom’s proposal risks a collapse of the disability service system, which would violate the Lanterman Act and make the state vulnerable to lawsuits, said Jordan Lindsey, executive director of the Arc of California, a statewide disability rights advocacy organization.

Families say the state has already fallen short on services they need. Strickland quit her job to care for Lily, the Santa Barbara mother said. “It’s not reasonable to expect someone to care for somebody else 24 hours a day, seven days a week,” she said.

Lily graduated from high school and in 2022 completed a program that prepares youth with disabilities to transition into adult life. She had been looking forward to joining a day program to make new friends but has yet to find a spot. And due to a shortage of workers, Lily receives only four hours a week at home with a provider, who is paid around $16 an hour.

When Lily hangs out with the provider, her demeanor changes to the happy person she used to be, Strickland said.

“The system is already in crisis,” she said. “There are tons and tons of people that are sitting at home because there’s nowhere for them to go.”

 

Source: news-medical.net, KFF Health News

Pinellas family plans to sue Sheriff’s Office after deputy mistook their car for a stolen vehicle

Pinellas family plans to sue Sheriff’s Office after deputy mistook their car for a stolen vehicle

PINELLAS COUNTY, Fla. — A Pinellas County family claims deputies traumatized them when they mistook their car for a stolen vehicle.

Jason Frederico said he was driving his 16-year-old daughter, who has epilepsy, to her mother’s house on New Year’s Day when he noticed flashing lights.

“As I pulled to the side and waited for them to go by me, they never went by. As I turned around, rolled down the window, the cops were shouting, ‘Let me see your hands. Step out of the car.’ Zero to 60 very quickly,” Frederico explained.

The incident report said the deputy commanded Frederico and his daughter “at gunpoint” to get out of the car before putting them both in handcuffs.

“They put the handcuffs on her, and at that point, I’m screaming at the deputies, you know, ‘She’s 16! She has epilepsy! The flashing lights. you know, like, what is going on?'” Frederico added.

Frederico said he was never asked to confirm his identity either.

According to the report, the deputy admitted he made an ‘administrative error’ when running Frederico’s license plate. His tag is registered in Florida and deputies were looking for a stolen vehicle with similar tags, but registered out of New Mexico.

“That should trigger an officer to second guess himself before ordering an individual who’s completely innocent out of his car and, even worse, with guns raised and pointing the guns at that individual and his daughter,” attorney TJ Grimaldi said.

ABC Action News has requested the deputy’s body camera video and asked the Sheriff’s Office for comment. Wednesday, we were told Sheriff Bob Gaultieri is aware of the incident, but has not had a chance to review the case.

Meanwhile, Frederico said this should have never happened, but he hopes proper training will be enforced as his family works to heal from the trauma.

“My daughter actually sat there and looked at me with tears in her eyes and said, ‘I thought they were going to kill you,” Frederico said.

He continued, “So this is what I’m dealing with, and that night, probably from that night, maybe the next month when I would close my eyes to go to sleep, that’s all I saw was this young, innocent 16-year-old girl in handcuffs which is horrible for any parent to witness.”

 

Source: abcactionnews.com, Lydia Vazquez

Letters to the Editor: People with epilepsy are afraid to talk to their doctors. How California can change that

Letters to the Editor: People with epilepsy are afraid to talk to their doctors. How California can change that

To the editor: We at the Epilepsy Foundation Los Angeles were heartbroken to read Paul Karrer’s article about his father’s death.

His story, however, is a tragic outlier. Adults with well-controlled epilepsy are involved in fewer crashes than drivers with many other medical conditions. One study found that a fraction of 1% of all car crashes are caused by a person with epilepsy.

People with uncontrolled epilepsy or who are not taking their medication as prescribed should not be driving. People should also be honest with their doctors — but California is one of only six states that require doctors to report anybody with epilepsy to the government, making many afraid to speak openly to their physicians.

That’s why we support Senate Bill 357 by state Sen. Anthony Portantino (D-La Cañada Flintridge). SB 357 would replace an ineffective mandatory reporting system with one that promotes honest dialogue, while maintaining the DMV’s authority to withhold or suspend a license from a potentially unsafe driver.

Too many people with epilepsy live in fear and shame of their condition. As we learned from Karrer’s piece, making people afraid to talk about their seizures with their own doctors can have tragic consequences.

 

Source: latimes.com, David Parker, Rebekkah Halliwell

 

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