Shaken Baby Syndrome: The Very Serious Damage Of Violence On The Newborn Child

Shaken Baby Syndrome: The Very Serious Damage Of Violence On The Newborn Child

Shaken baby syndrome (also called by the acronym SBS, or abusive head trauma or shaken baby syndrome) is a very serious form of physical abuse, mainly – but not exclusively – intra-familial abuse of children generally under one year of age (infants and young children)

Causes of Shaken Baby Syndrome SBS

The causes of SBS are the rapid and violent shaking of the child, which generally occurs over a period of 10-20 seconds.

The baby is shaken violently by the caregiver, usually the father, mother, grandparent or guardian, as an exaggerated reaction to the baby’s inconsolable crying.

The peak incidence of SBS occurs between 2 weeks and 6 months of age, the period of maximum intensity of infant crying.

At that age a shaking movement is particularly dangerous, because

  • the baby does not have full control of its head;
  • the baby’s neck muscles are weak;
  • the baby’s head is heavy in relation to the body;
  • the baby’s brain is of a gelatinous consistency and moves strongly in the skull when the head is shaken;
  • the bone structure is still fragile.

Parents in the first months of a baby’s life, and particularly in the case of a first-born child, are subjected to great stress and sleepless nights that can lead to such exasperation that – at the umpteenth cry – they cause totally irrational reactions, such as shaking the baby violently.

A risk factor that can trigger violent and irrational behaviour towards a newborn child is post-partum depression.

Consequences for the baby of SBS

The consequences of shaking can unfortunately be particularly inauspicious, especially at the nerve level, and are similar (and often worse) to those that can occur in a rear-end car accident: subdural or subarachnoid intracranial haemorrhages, brain contusions and direct nerve fibre lesions are fairly typical events and can lead to brain death of the baby.

Shaking causes a mechanical damaging action related to the abrupt accelerations and decelerations to which the encephalon, cerebral vessels and more generally all tissues are subjected, which – in simple terms – literally slam against the skull back and forth.

The forces generated by the shaking can cause the brain’s white matter axons to stretch and sometimes completely rupture.

The shaking can easily lead to permanent neurological damage with even very severe motor and/or sensory deficits such as paralysis, slowed psycho-motor acquisition, cognitive-behavioural deficits, deafness, retinal haemorrhages, often resulting in central blindness, multiple fractures, mostly of the skull (if there is also impact on the surface), long bones and posterior portion of the ribs.

This can lead to coma or death of the child in one out of four cases.

Shaken baby syndrome: “So much damage from one shake?”

Certainly yes: even a fairly weak and short-lasting shake, which is harmless in an adult, can have disastrous effects on the baby, and it is not by chance that one of the most important precautions in the first months of life is precisely to prevent the baby’s head from being supported.

Some peculiar anatomical features of newborns and infants favour the occurrence of the biomechanical damage already described: fundamental is the considerable volume and weight of the head in relation to the rest of the body mass, the hypotonia of the cervical paraspinal musculature (which causes the typical ‘dangling’ of the head in the first months of life), the high water content of the immature central nervous system, the incomplete myelination of the nerve fibres and the high volume of the subarachnoid spaces compared to the still modest brain volume.

Diagnosis of SBS

Tracing certain lesions to the syndrome may not be entirely easy: they can often be confused with lesions caused by trauma during play.

A thorough investigation by the paediatrician, forensic scientist and law enforcement is always necessary.

Retinal haemorrhages can also potentially be diagnosed with MRI.

Variants of Shaken Baby Syndrome

The Anglo-Saxon term ‘Shaken impact syndrome’ denotes a variant of ‘shaken baby syndrome’, in which the child is not simply shaken furiously, but is thrown violently against a fixed surface, not necessarily hard and rigid, such as a bed.

 

Source: emergency-live.com,

Bridging the gap between adolescent and adult care

Bridging the gap between adolescent and adult care

University of Cincinnati clinics aid patients with disabilities, epilepsy

Medical researchers estimate that about 4.5 million Americans with chronic health conditions are currently moving from adolescence into adulthood.

The process of becoming an adult can be stressful enough, but this population has the added challenge of no longer being able to get care from the pediatric health care team they are familiar with and having to find new adult health care providers.

Researchers at the University of Cincinnati have studied best practices to make the transition from pediatric to adult care a more streamlined process and have launched two transition clinics to help patients in this process. Jensine’ J. Clark, MD, leads the Physical Medicine & Rehabilitation (PM&R) Transition Clinic at the UC Gardner Neuroscience Institute (UCGNI) for patients with childhood-onset disabilities, while Emily Nurre, MD, leads the Epilepsy Transition Clinic.

PM&R Transition Clinic

Pediatric-onset disability is a broad term used to describe any disability that happens to a child and affects their development, Clark said, including spinal cord injuries, spina bifida, cerebral palsy or any condition that causes developmental delay.

“Previously, children with pediatric-onset disability didn’t live into adulthood, and so our general understanding of the processes and what adults with childhood-onset disabilities look like is relatively new in terms of the field of medicine,” said Clark, assistant professor in the Department of Neurology and Rehabilitation Medicine in UC’s College of Medicine and a UC Health physician. “Unfortunately, we did not have enough robust systems to care for them once they became adults, and that care continuum was not always smooth.”

Many patients can feel anxiety in having to begin a relationship with new doctors, therapists and others after engaging with the same care team for years, Clark said. The clinic has three main objectives as patients make the transition to adult care.

First, the team works to develop a transition action plan and an individualized treatment plan for each patient, which includes identifying what providers the patient is currently seeing and who they need to continue to see in adult settings.

“As the rehab doctor, we are serving as the quarterback of all the different other specialties,” Clark said. “For example, patients were seeing a pulmonologist, but they may not need to continue that into adulthood. So the first thing is to identify what type of providers they need to transition.”

The PM&R Transition Clinic helps facilitate services including primary care, neurology, neurosurgery, musculoskeletal interventions, orthopedics and OB/GYN. The clinic also offers a unique gait lab that can observe how patients walk and help them walk more easily.

It makes you feel very safe, and the professionals just work very well together. They bring out the best in each other. You can just see that it’s an organized, cohesive team that’s there to support each other as well as the patient and anyone that comes along with the patient.

 Geri McCarthy, mother of PM&R Transition Clinic patient MacKenzie McCarthy

In addition to coordinating and providing care, the second objective of the clinic is to focus on the social aspects that come with transitioning to adult care.

“It’s helping to navigate if there are insurance changes, the school to either work or community integration changes and making sure they have those peer support groups,” Clark said.

Finally, Clark said the clinic helps encourage parents to take a more passive role in their children’s care and empower the patients themselves to manage their own health care.

“For the child’s whole life, the parent has been No. 1 in the room. You address the parent, you talk to the parent, but now we’re transitioning those skills from the parent to the child,” she said.

“It affects everybody differently, because the parents feel like they’re getting kicked out, and so there’s that feeling of separation.”

Clark completed a PM&R residency at UC and returned after a fellowship specifically to build the PM&R Transition Clinic as a partnership between Cincinnati Children’s Hospital Medical Center (CCHMC) and UC/UC Health. Her previous experience has been helpful in building trust and relationships between the entities, she said.

“Having trained here, and working with people on both the pediatric and adult side, people are familiar with me as a person,” Clark said. “So that gives credence when they’re counseling their families and saying, ‘I know Dr. Clark personally and I know that she’s going to help take great care of you.’ That lends a lot of confidence to the patients and families.”

Epilepsy Transition Clinic

Nurre said patients with epilepsy have many of the same struggles when learning how to take responsibility for their own care, which can include sticking with their medication regimen, knowing safety practices to help prevent seizures and filling their own prescriptions.

“Epilepsy patients in general have a high rate of comorbidities like depression and anxiety, among other things, and so that’s also a challenge for this patient population especially in these years,” said Nurre, assistant professor of neurology and rehabilitation medicine at the UC College of Medicine and a UC Health neurologist. “A lot of what I do is making multidisciplinary, community, and provider partnerships to bring people together to help this population, because it takes a village.”

Nurre and her UC colleagues collaborate with CCHMC and Epilepsy Alliance of Ohio staff to hold the transition clinic once a month in West Chester, Clifton or Florence locations.

Through research including discussion with transition health care providers and patient focus groups, the team determined patients should be introduced to the need to transition to adult care around age 13 and no later than age 16. Patients meet with Epilepsy Alliance social workers at their final pediatric visit and their first visit on the adult side.

“We found that patients really wanted a warm handoff, somebody that they knew and trusted through the process of transitioning,” Nurre said. “We are grateful that the Epilepsy Alliance social workers provide an additional trusted source of information and assistance during transfer from pediatric to adult care.”

As patients begin to see adult providers, Nurre said the transition continues with education initiatives and ongoing work to set the patients up for success.

“There’s often a high rate of no-shows, medication and care gaps, and lack of skills to navigate the adult health care system. It’s a time where it’s easy for patients to get lost in the gap between pediatric and adult care,” she said. “We are working to create a more streamlined, standardized process for the patients that makes it easier for them to transfer and decrease chances of missed medications, seizures, emergency department visits and gaps in medical care.”

Clara’s story

Clara Hartman transitioned her epilepsy care from CCHMC to UC Health when she was 21. She said the transition team helped make it a positive experience.

“They know where you’re coming from, so it’s not like they expect you to be a fully fledged adult. They know you’re coming from Children’s, and it’s really important to have somebody who understands that,” she said. “If they didn’t have such a good transition in place, I may not have kept up with my epilepsy care like I should have. I know myself, and I probably wouldn’t have followed through with setting up my own appointments and it would have been horrible.”

Hartman said even as she has taken a more active role in her care, she is still grateful for reminders and encouragement from her mom along the way.

“She’s always super supportive in making sure I make the appointments that I need to make and make the calls I need to make,” Hartman said. “It turned more into my mom asking me about it so that I can tell her rather than her just telling me about it. So she’s still active and involved in a what are you doing kind of way.”

While Hartman has transitioned to adult care, CCHMC is continuing to have an impact on her life. Her positive experience with the psychologist she saw as a patient inspired her to pursue a career in clinical psychology, and she currently works at CCHMC as a clinical research Long term, Hartman hopes to earn her PhD in clinical psychology and return to Children’s working in integrated behavioral health.

MacKenzie’s story

MacKenzie McCarthy became a PM&R Transition Clinic patient several months ago. MacKenzie has cerebral palsy and quadriplegia and had been treated by a team at CCHMC her whole life.

MacKenzie’s mother Geri said they were both a bit apprehensive to transition to a new care team, but they were encouraged by Clark’s approach to beginning the process when they first spoke together.

“They kind of gave us the clue that she was interviewing MacKenzie as much as MacKenzie was interviewing her, that Dr. Clark didn’t want to take on people where it wasn’t going to be a good fit,” Geri said. “The gist was they wanted it to be a positive experience for both parties.”

MacKenzie, an avid Cincinnati sports fan, recalled she was decked out in Bengals gear at her first appointment in Clark’s office and felt immediately welcomed when the office staff broke out into a Bengals cheer.

“It makes you feel very safe, and the professionals just work very well together,” Geri said. “They complement each other. They bring out the best in each other. You can just see that it’s an organized, cohesive team that’s there to support each other as well as the patient and anyone that comes along with the patient.”

In addition to rehab with Clark, the PM&R Clinic is coordinating dental, primary care, physical therapy and neurosurgery services for MacKenzie. MacKenzie has learned to become an advocate for herself over the years, and Geri said she was grateful to see Clark and her colleagues respectfully talk with MacKenzie without talking down to her.

“I’m just her sidekick it seems, and I’m fine with that because I don’t want to be that helicopter parent,” Geri said. “MacKenzie knows her body and they know that. It’s been real responsible, respectful exchanges, which is wonderful. They appreciate what she brings to the party.”

The McCarthys said it is particularly appreciated that the adult care team and facilities are welcoming and safe, from the heated garage with adequate spacing for their custom-made lift van and prominent directory signs at UCGNI to large rehab rooms that are wheelchair accessible.

“It ended up being an answer to a prayer, and all the people that we’ve met so far have been fantastic,” Geri said. “When you have a person that is disabled and can easily get sick, and you go to a facility that’s clean and spacious and you feel like they’re taking all precautions to ensure the patient and family’s safety, it means the world to us.”

For more information about the PM&R Transition Clinic, call 513-418-2225. For more information on the Epilepsy Transition Clinic, email emily.nurre@uc.edu.

 

Source: uc.edu, Tim Tedeschi

Trees Forever plants ‘beautiful legacy’ to raise epilepsy awareness in honor of late Joe Drahos

Trees Forever plants ‘beautiful legacy’ to raise epilepsy awareness in honor of late Joe Drahos

30 trees are planted along Cedar Rapids’ Grande Avenue SE

CEDAR RAPIDS — When Pat Drahos’ late son, Joe, was about 10 years old, he had endless adventures with his best friends playing along the Grande Avenue SE boulevard.

She remembered him posing for photos when the boulevard was put there in the 1990s. In the winter, Joe and his neighbor friends B.J. and Carl would mound piles of hard snow into a fort — “which really isn’t safe when you consider that’s where the cars would slide into,” Drahos said with a smile.

But B.J. assured her at the time that they were sensible builders: “We had to cut a window out of it so we could stick our head out and see if a car was coming.”

Joe died last August at age 33 of Sudden Unexpected Death in Epilepsy (SUDEP). He had his first grand mal seizure at 22, and was diagnosed with epilepsy six months later after a second seizure.

His epilepsy worsened with time, disrupting his ability to work as a petroleum engineer and go about his usual activities. Joe loved football, was a skillful piano player and was devoted to his family.

After the 2020 derecho, Joe returned from California and was stunned to see the fallen trees — toppled by the storm’s hurricane-force wind gusts — lining his childhood play place.

“When he passed, it just seemed only fitting I thought we would get maybe one or two trees,” Drahos said.

But with the help of Marion-based nonprofit Trees Forever, there will be over 30 trees planted along Grande Avenue SE, from the Drahos’ house on the 1900 block toward Third Avenue SE, in Joe’s honor and to raise epilepsy awareness.

The Drahos family approached Trees Forever and had secured over $6,500 in funding from the community and some donors around the country to support the tree planting and maintenance.

As Trees Forever’s community project, the organization will provide two years of care for the new trees. The nonprofit purchased the trees at-cost, about $250 to $300 per tree.

About 20 Trees Forever staff and some volunteers helped plant the trees Wednesday afternoon. Honey locust, Kentucky coffee and tulip trees, said to be Joe’s favorites, were planted in front of the Drahos’ house and will provide a gold flower canopy in the fall. Swamp white oak, American sycamore and London plane trees also were part of the planting.

Kiley Miller, Trees Forever president and chief executive officer, said this project was planned before the organization’s ReLeaf partnership with the city of Cedar Rapids to help replenish the tree canopy lost in the derecho.

“This family and the people on this street will remember Joe every day when they see these trees grow, and that is a beautiful legacy,” Miller said.

The Drahos family planted four trees last fall — two outside their house — and lined them with purple battery-operated string lights, a nod to the color for epilepsy awareness.

“People look at them now and think of Joe,” Drahos said.

She hopes the trees help raise awareness of epilepsy and educate people that those with epilepsy are not unemployable and need accommodations.

According to the U.S. Centers for Disease Control and Prevention, there are about 3.4 million people with epilepsy nationwide — 3 million adults and 470,000 children. There are 31,400 in Iowa.

Epilepsy can be caused by different conditions that affect a person’s brain. The cause is often unknown, but some causes include stroke, brain tumor, central nervous system infection and traumatic brain injury or head injury.

Around two-thirds of people with epilepsy can control their seizures with medication, but the rest do not gain seizure control.

“I want (people) to know that this is not uncommon, and that there is no cure, that we need a lot more research,” Drahos said.

 

Source: thegazette.com, Marissa Payne

New Mobile App Giving People With Epilepsy Advanced Warning Of A Seizure

New Mobile App Giving People With Epilepsy Advanced Warning Of A Seizure

A new mobile app feature – made here in Australia – is bringing new hope to epilepsy sufferers worldwide.

The innovative technology, which has been 10 years in the making, is designed to help better diagnose and forecast epileptic seizures in real time.

The free app known as Seer Epilepsy Management, developed by Melbourne-based med tech Seer Medical as a non-invasive management tool, will now include the soon-to-be released forecasting tool.

It also has a bunch of other tools for sufferers including medication reminders, and the ability to log seizure events and previous medical history.

Patients can record their symptoms as well as previous episodes on the app, which then collates patterns and possible triggers and predicts seizures up to a month in advance.

The app will collate patterns to help predict seizures. Credit: Seer Medical

The technology is set to be a game-changer for the thousands of sufferers who experience unpredictable seizures.

The Epilepsy Foundation of Australia said for the 250,000 people across the country currently living with epilepsy, the “worst part” of having seizures is that they happen with little or no warning.

“The uncertainty of seizures puts people in danger – even ‘small’ seizures can result in serious injuries or death if they happen while driving, in the shower, cooking or pouring a kettle, climbing stairs or other everyday activities,” it said.

“Unfortunately, this means people with epilepsy sometimes have to give up their driver licence, modify or quit certain hobbies, and they or their family may experience anxiety in their day-to-day lives.”

The Foundation added that two-thirds of people who suffer from the debilitating condition can eliminate their seizures by taking medications.

But this leaves about 24 million people, worldwide, living with unpredictable seizures.

“If people had some warning of when their seizures were more likely, it could reduce their stress and improve safety,” the Foundation said.

Hamish Macmillan, who suffers from epilepsy, told he experiences on average 10 seizures each year and has to be extremely careful when undertaking various tasks.

“That’s anything from taking a shower by yourself, to crossing the road, anything that might be slightly or mildly dangerous I have to think twice about,” he said.

“I’ve learnt to manage it, and it has gotten better, but the worst part is still just that unpredictability element of it.”

The app can also be linked to a smartwatch that can track body movements and vital signs.

 

Source: vervetimes.com,

Japan Considers Very Limited Medical Cannabis Reform

Japan Considers Very Limited Medical Cannabis Reform

Japan’s Health Ministry is considering reforming the nation’s cannabis laws to provide for the legal use of medical cannabis.

A panel comprised of Japan Health Ministry experts met last week to continue discussions regarding revisions to Japan’s 1948 Cannabis Control Law.

It’s the latest step in what will likely be a very lengthy process to explore legalizing medical cannabis in Japan.

What is being proposed in Japan, if enacted, would only legalize medical cannabis in very limited forms and situations.

Only cannabidiol (CBD) would be legalized, whereas tetrahydrocannabinol (THC) would remain prohibited. Even the limited CBD reforms that are being proposed in Japan are being met with some skepticism among health experts in the country for whatever reason.

June 2021 Report

The discussions currently underway in Japan are the result of a report that was released nearly a year ago in June 2021.

The report, which was compiled by Japan’s Health Ministry, recommended that CBD be allowed to treat refractory epilepsy.

CBD has been found to effectively treat refractory epilepsy, and it is commonly prescribed to help treat the condition in a growing list of countries.

Japan’s current cannabis laws are largely built on the concept of banning parts of the cannabis plant, versus focusing on cannabinoids and limits of cannabinoid content.

Banning parts of the cannabis plant seems to be a common concept in the region when it comes to cannabis policy whereas in Western countries hemp, which is what CBD is largely sourced from, has a THC percentage limit for both harvests and finished products.

Unfortunately, the ministry panel is also recommending that a new law be created that would harshly punish people for simply using cannabis for non-medical purposes, which is a particularly harsh policy.

It’s unclear how such a cannabis policy would be enforced, however, it’s a safe assumption that people suspected of having cannabis in their system would likely be automatically tested, which would be a massive invasion of privacy and is a policy that is ripe for selective enforcement .

Why Is Japan So Scared Of Cannabis?

People all over the planet, including in Japan, have used the cannabis plant for medical and / or recreational purposes for centuries. By historical standards, the cannabis plant was only banned recently, and even then, the enactment of prohibition was based on harmful political ideology and not on sound science.

Cannabis prohibition is one of the most harmful public policies on earth, and that is particularly true in Japan where cannabis prohibition is being used to ruin many lives.

Over the course of the last 8 years, the number of people being arrested for cannabis in Japan has increased, even though cannabis arrests have decreased in many other countries during the same time period.

The rise in cannabis arrests culminated in a record being set in 2021, with a reported 5,482 people being arrested for cannabis offenses in Japan during the last full calendar year.

Roughly 70 percent of the arrests involved suspects that were teenagers or in their 20s.

The rise in arrests is an indication of heightened cannabis prohibition enforcement by Japan in recent years, although Japan’s government is portraying the rise of arrests as being the result of increased consumption rates.

In reality, Japan has one of the lowest cannabis consumption rates on the planet. Consider the fact that only 1.8% of people in Japan report having consumed cannabis during their entire life.

Japan doesn’t have a cannabis use problem. It has a cannabis prohibition problem, and that problem will only get worse if Japan enacts a new anti-cannabis consumption law.

 

Source: thehealthguild.com

Kids with additional needs lose ‘lifeline’ summer school

Kids with additional needs lose ‘lifeline’ summer school

Angry families have slammed cuts to a “lifeline” summer service at a school for kids with additional needs.

They hit out after East Renfrewshire Council cancelled two weeks of holiday activities at Isobel Mair School, in Newton Mearns, for more than 100 primary and secondary pupils.

The cost-cutting move means the sessions will now only be provided for 37 children, over fewer days.

Barrhead woman Selina Yau, 30, who is a carer for her 16-year-old brother, claims families have been left in the lurch and will have to take extra time off work.

The social worker said the annual two-week programme gave stressed-out parents and carers a much-needed break over the summer.

She launched a petition on May 20 calling on council chiefs to reverse their decision and, within days, it had attracted thousands of signatures.

Selina, whose brother has autism and epilepsy, said: “This will significantly impact on the mental health and wellbeing of the pupils.

“This time is also invaluable to parents and carers who are able to get a small break during the long summer holiday.

“Many viewed the two weeks as a lifeline, as they are also able to use this time to focus on their other children.”

Although the move will save cash-strapped council chiefs tens of thousands of pounds, Selina believes it could prove costly in the long term, as many parents and carers will have to seek support from the local authority if they are unable to get time off work to look after their children.

She added: “We are appalled that the council made this decision at such short notice, without consulting the children or us.

“There are not many out there who are qualified to look after young people with complex needs.

“The decision has effectively extended the school holidays from five to seven weeks, leaving most parents unable to find or afford alternatives.”

Chloe Muir’s eight-year-old son Callum has Down’s Syndrome and autism and has attended Isobel Mair School since he was four.

The 50-year-old police officer and her husband were stunned when they found out there would be no place for Callum this summer.

Chloe told the Barrhead News: “My reaction was one of shock and disbelief.

“We can’t ask people to babysit, like other parents, because of Callum’s special needs.

“The two weeks every summer gives my husband and I much-needed respite.

“We do not have a social life, we do not go out together, except with the children.

“For us, these two weeks are critical.”

Chloe, who lives in Busby, says Callum needs round-the-clock care, has to be fed through a tube and requires oxygen at night.

“I can’t understand why the council think this money-saving idea is a step in the right direction,” she added. “There ‘s been no thought put into it at all.

“I do not think they realise what the knock-on effect will be. It’s a huge setback for the children and their care.

“You’re talking about the most vulnerable people in society being badly let down.”

Barrhead dad Paul Dickson’s 10-year-old twins Eva and Luke, who are both severely autistic, are among the 37 pupils who have been offered summer school places – but the number of days has been reduced from 10 to six.

Paul, 46, said: “There has been no negotiation or consultation. They are taking support away from some of our most vulnerable kids.

The long-term damage this will cause far outweighs any savings which are being made.

“We don’t blame the school – the decision has come from the council. It doesn’t seem very smart or very fair.”

Members of Isobel Mair School Parent Council were due to meet with officials last night to discuss the cutbacks.

A spokesperson said: “The Parent Council are distressed and hugely concerned about the impact of the cuts to the extended school year on pupils and their families.

“We’ve never had such an overwhelming response, with many deeply worried about what they will do and the impact on their mental health.

“Families have been informed of these cuts with only six weeks notice and no suitable alternative available.

“Emails to the Director of Education, voicing our concerns, as yet remain unanswered.”

Michael McEwan, of the East Renfrewshire Disability Action campaign group, also slammed the summer school cutbacks.

He said: “ There was no consultation carried out. This has had a devastating effect on parents.”

A spokesperson for East Renfrewshire Council said: “We understand that the proposed change to the structure of holiday provision at Isobel Mair will be difficult for those impacted.

“Unfortunately, like all councils, we continue to face extremely challenging financial pressures and, when the budget for 2022/23 was set in March, a range of tough savings had to be made

The additional holiday provision previously available for all in Isobel Mair has been redesigned to support children with the most complex needs, as we try to mitigate the impact of the saving as much as possible.

“We continue to work closely with a range of partners to identify suitable alternative support measures for families.”

 

Source: barrheadnews.com,  Norman Silvester

New treatment option available for Dravet syndrome

New treatment option available for Dravet syndrome

Global biopharma company UCB says the UK’s National Institute for Healthcare Excellence (NICE) has issued a positive Final Appraisal Determination (FAD) for its FINTEPLA (fenfluramine) oral solution.

FINTEPLA is used for the treatment of seizures associated with Dravet syndrome as an add-on therapy to other anti-epileptic medicines for patients two years of age and older.

Dravet syndrome is a rare, lifelong epilepsy that begins in infancy.

It has an estimated incidence rate of one in 15,700 people. Common issues associated with Dravet syndrome include: prolonged and frequent seizures, behavioral and developmental delays, movement and balance problems, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, and sensory integration disorders.

Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (sudden unexpected death in epilepsy), prolonged seizures, and seizure-related accidents such as drowning, and infections.

“Given that Dravet syndrome is particularly challenging to treat, we are acutely aware of the ongoing unmet medical need for people living with this condition. This news underscores the wider recognition of addressing this unmet need and echoes UCB’s ongoing commitment to the epilepsy community,” said Claire Brading, managing director, UK & Ireland, UCB. “We are delighted to have received this positive NICE decision and look forward to making this treatment option more widely available as an add-on therapy for Dravet syndrome patients in the UK.”

Galia Wilson, chair and trustee of Dravet Syndrome UK, whose son has the condition, said: “Dravet syndrome is a catastrophic condition which has a devastating impact on every aspect of life. Individuals with the condition and their families are in urgent need of improved treatments and care.”

Wilson said as Dravet syndrome can be unpredictable, like many of the current treatments, fenfluramine may not work for all. However, she added, from clinical and real-life experience, it can be transformative.

New treatment option

Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy & Head of UCL-ICH Neurosciences Unit, said one of the many complexities of Dravet syndrome is that seizures are usually treatment-resistant.

“Children with Dravet syndrome suffer from frequent and prolonged epileptic seizures, affecting quality of life for both them and their caregivers,” Cross said. “Fenfluramine has demonstrated an impressive reduction in seizures in clinical studies, so this positive decision from NICE means an effective new treatment option and hope for an improvement in quality of life for families concerned.”

Other companies such as Austrian biotech a:head bio AG are also working on combating neurological disorders including Dravet syndrome. Last year, the company secured more funding to recreate human brain disorders in a lab setting.

In late 2022, a:head is planning a series A financing round to prepare for its next growth phase.

 

Source: labiotech.eu, JIM CORNALL

Adults in 50s and Seizure Outcomes Following Resective Epilepsy Surgery

Adults in 50s and Seizure Outcomes Following Resective Epilepsy Surgery

Age 50 years and older should not be considered an exclusion criterion for resective epilepsy surgery (RES) in patients with drug-resistant temporal lobe epilepsy (TLE), according to a retrospective analysis published in the journal Neurochirurgie.

Surgery is an effective treatment for patients with drug-resistant TLE. However, it’s not commonly done in older patients because of a perceived higher probability of perioperative complications, cognitive decline, and worse seizure outcomes. The objective of the current study was to screen all individuals who underwent this surgery at Centre Hospitalier Régional Universitaire de Nancy (CHRUN) in Nancy, France, from January 2007 to March 2019.

The primary study endpoint was freedom from disabling seizures (Engel I) at 2 years postoperatively. Secondary endpoints included occurrence of surgical complications and neuropsychological outcome within 1 year postoperatively. The results were compared with those from a younger patient population who underwent surgery during the same time period.

Among a total of 19 participants aged 50 years and older, the mean age at the time of surgery was 54.94± 5.06 years (range, 50 to 69 years), compared with 34.12±8.36 years (range, 18 to 49 years) among the younger patient population. Further, the male-to-female ratio was significantly higher in the group of patients aged 50 years and older than in those younger than 50 years of age (0.93 vs 0.36, respectively).  The mean duration of epilepsy at the time of surgery was 20.43 years among younger patients compared with 36.6 years among older patients, with the difference between both groups being statistically significant.

At 2 years postoperatively, the rates of Engel I seizure outcome did not differ significantly between individuals younger than 50 years of age and those 50 years of age or older (73.9% vs 94.4, respectively). Postsurgical complications were experienced by 11.9% of younger participants and 47.7% of older participants.

An early neurologic deficit (ie, within 1 week postsurgically) was reported in 7.4% of the younger participants vs 42.1% of the older participants. Within a period of 6 weeks, the neurologic deficit was resolved without sequelae among 6% of those in the younger patient group vs 36.8% of those in the older patient group. Oculomotor deficits — the most common form of neurologic deficit — were reported in 3% of younger individuals and 26.3% of older individuals.

Study limitations included its small sample size of patients aged 50 years and older, along with its single-center, retrospective design. Further, the possibility cannot be excluded that selection bias existed, with only those individuals with the highest likelihood of attaining good postsurgical results being chosen.

The researchers concluded “Patients aged ≥50 years had an excellent seizure outcome at 2 years postoperatively,” with nearly 95% of these individuals achieving freedom from disabling seizures at 2 years postoperatively.

 

Source: neurologyadvisor.com, Sheila Jacobs

Groove rhythm stimulates prefrontal cortex function in groove enjoyers

Groove rhythm stimulates prefrontal cortex function in groove enjoyers

Abstract

Hearing a groove rhythm (GR), which creates the sensation of wanting to move to the music, can also create feelings of pleasure and arousal in people, and it may enhance cognitive performance, as does exercise, by stimulating the prefrontal cortex. Here, we examined the hypothesis that GR enhances executive function (EF) by acting on the left dorsolateral prefrontal cortex (l-DLPFC) while also considering individual differences in psychological responses. Fifty-one participants underwent two conditions: 3 min of listening to GR or a white-noise metronome. Before and after listening, participants performed the Stroop task and were monitored for l-DLPFC activity with functional near-infrared spectroscopy. Our results show that GR enhanced EF and l-DLPFC activity in participants who felt a greater groove sensation and a more feeling clear-headed after listening to GR. Further, these psychological responses predict the impact of GR on l-DLPFC activity and EF, suggesting that GR enhances EF via l-DLPFC activity when the psychological response to GR is enhanced.

Introduction

A growing amount of evidence shows that physical exercise has beneficial effects on cognitive functions, especially on human executive function (EF) mainly in the prefrontal cortex (PFC). Our recent study using acute exercise with music showed that the key factor of exercise’s effect on prefrontal executive function is a positive affective response expressed the two-dimensional axis of pleasure and arousal.

Another potential stimulus which can improve EF through a positive affective response is groove rhythm (GR). GR is a musical rhythm that induces the sensation of “Wanting to move to the music” (groove sensation) accompanied by positive affective responses while listening to music. GR can be defined by the subjective score of “Wanting to move to the music” and “Good nori”. The groove sensation can be modulated by syncopation. Syncopation is a method of shifting rhythmic emphasis by manipulating the complexity of a rhythm. Rhythm with low to medium syncopation induces a higher groove sensation than does rhythm with high syncopation as evidenced by averages of mass groups in previous studies. Low-frequency components, such as the bass drum, induce entrainment of body movement and musical beat. In several previous studies, drum breaks consisting of hi-hat, snare-drum, and bass-drum sounds were used because they made it easy to control rhythmic factors, syncopation, bass sound, and tempo.

Moving the body to music is a universal phenomenon (e.g., clapping, nodding, swaying) and one of the main powers of music. Music with groove-inducing characteristics increasing in recent music popularity charts may be indicative of this. That groove music improves gait performance in Parkinson’s disease (PD) by reducing the cognitive demands of synchronizing to the beat and promoting vigorous movement shows that groove music affects the interaction between body movement and brain function. More interestingly, listening to groove music induces entrainment of body movement and musical rhythm together with positive affective responses and activates neural networks associated with motor and reward systems. Since the dopaminergic reward system projects not only to emotion-related brain areas but also to cognition-related areas such as the PFC, GR could increase prefrontal cortex (PFC) activity and lead to improved EF. However, no research has explored the effect of groove music on executive function (EF) and prefrontal activity to date. The reason for this could be that the effect of GR on EF may have large individual differences because both groove sensation and concurrent positive affective responses to groove music would have many individual differences and both responses are associated with reward system activity. Therefore, we should examine the single effects of GR on EF and its relationship with PFC activity. To examine this, consideration of the psychological responses to listening to groove rhythm (GR) as influential factors that explain individual differences and creation of an experimental model which can evaluate the effect of GR on EF and how it is related to PFC activity are necessary.

To that end, in the current study we introduce the combination of an acute experimental model that was used for the detection of exercise’s effect on cognition and prefrontal activity and a grouping analysis to explore the psychological response to GR. In our previous research, we used functional near-infrared spectroscopy (fNIRS) with the color-word-matching Stroop task (CWST), which evaluates inhibitory EF, in order to clarify the effects of an acute bout (10 min) of exercise. fNIRS is a non-invasive neuroimaging method which can monitor hemodynamic response to neural activation (neurovascular coupling) by using near-infrared light passing through tissue. Since fNIRS allows for the least restrictive measuring environment among neuroimaging modalities, it can measure regional cortical activation boosted by listening to music while minimizing possible negative environmental influences on psychological response and cognition. The CWST has been adopted in numerous neuroimaging studies including fNIRS studies, and the brain regions related with the task are well known. The DLPFC is a key region for inhibitory control of EF and responsible for CWST performance. In addition, the left hemisphere plays a key role in the processing of verbal information. Therefore, we focused on the left dorsolateral prefrontal cortex (l-DLPFC) as the region of interest (ROI). A previous study indicated that l-DLPFC activity correlated with a positive affective response and that EF changed with a single bout of exercise with music. Therefore, in the current study, the color-word-matching Stroop task (CWST) was performed before and after listening to GR while monitoring l-DLPFC activity using fNIRS. In addition to this acute model, cluster analysis using the subjective senses of both groove sensation and psychological state when listening to GR was introduced, and we tried to reveal the individual differences in the effect of listening to groove rhythm (GR) on EF and task-related l-DLPFC activity.

GR elicits groove sensation and concurrent positive affective response, but it is not known whether it enhances inhibitory executive function (EF) with dorsolateral prefrontal cortex (l-DLPFC) activity as a result. The purpose of this study is to determine whether GR enhances EF and l-DLPFC activity, focusing on individual differences in psychological responses to GR. Our working hypothesis is that GR presented as drum breaks with low to medium syncopation enhances CWST performance with task-related l-DLPFC activation. Furthermore, the effects can be remarkable in participants who experience a higher groove sensation and positive psychological state. This study will allow us to look ahead to new aspects of the effect of GR, for example a potential cumulative effect with exercise.

Results

Physical load and psychological measures

Physical load and psychological measures for each experimental condition for all participants are shown. Paired t tests were conducted over condition (WM, GR). We confirmed that there were no differences in HR between conditions. GR elicited significantly higher scores compared to WM in these items: “Good nori”, “Wanting to move to the music”, “Feeling like my body is resonating with the rhythm”, “Having fun”, “Excited”, and “Feeling clear-headed”. WM elicited significantly higher scores compared to GR in these items: “Struggling to synchronize with the beat”, “Bored”, “Wanting to stop listening”, and “Feeling discomfort”.

Discussion

The purpose of this study was to determine whether GR enhances EF and DLPFC activity, focusing on individual differences in psychological responses to GR. To achieve this purpose, the current study tested the hypothesis that GR presented as drum breaks with low to medium syncopation enhances CWST performance with task-related l-DLPFC activation, and that the effects can be remarkable in participants who show higher groove sensation and positive psychological state. To our knowledge, this study presents the first experimental evidence for the enhancing effects of GR on EF and l-DLPFC activity in only participants for whom listening to GR largely augments both groove sensation and feeling clear-headed. In addition, these psychological responses to listening to GR were shown to predict EF and l-DLPFC activity.

First, as a precondition of the experiment, we confirmed that drum breaks with a low to medium degree of syncopation (GR) induced groove sensation (e.g., “Wanting to move to the music”, “Good nori”) and positive affective response (e.g., “Having fun”, “Excited”) compared with the WM by comparing average values. This agreed with previous studies showing that drum breaks with a low to medium degree of syncopation induce higher groove sensation. To make the rhythm more interesting to listeners and to thus induce groove sensation and the related positive affective responses, a balance between expectation and violation of the rhythm is thought to be important. This is supported by the hypothesis that prediction error (deviation from predicted rhythm) is a requisite for music to activate the reward system in the brain. Since the validity of our experimental design was confirmed, we proceeded to the detection of the effect of GR on cognitive function.

Regarding EF and l-DLPFC activity, we confirmed that there was Stroop interference in both Stroop task performance and l-DLPFC activity. However, there were no significant differences between experimental conditions. One possible reason for this is extensive individual differences in psychological response to groove rhythm (GR). Thus, we conducted a sub-group analysis to consider the influences of individual differences in psychological response. Using the k-means clustering method in which “Good nori” and “Feeling clear-headed” were the variables, participants were divided into three clusters. The results show that only in participants who felt a high groove sensation and a high feeling clear-headed (“Groove-familiar” cluster), listening to GR significantly enhanced executive function (EF) and l-DLPFC activity compared to the WM condition. Conversely, GR significantly decreased EF in the participants who felt a relatively low groove sensation and a low feeling clear-headed (“Groove-unfamiliar” cluster). Furthermore, using path analysis, we detected a potential causal relationship between groove sensation, psychological state, dorsolateral prefrontal cortex (l-DLPFC) activity, and EF. The model described that groove sensation influenced both psychological state and l-DLPFC activity and that psychological state influenced EF and l-DLPFC activity. When interpreting neural activity, it should be considered together with task performance. With regard to improved task performance, neural activity may decrease, remain unchanged, or increase. A decrease or no change in neural activity despite an improvement in task performance can be interpreted as an increase in neural efficiency. Gender, task difficulty, and training are known to be influential factors of neural efficiency. On the other hand, if neural activity increases with improved task performance, it can be interpreted as an increase in neural activity to achieve higher task performance. In the present study, increased l-DLPFC neural activity was positively correlated with better color-word-matching Stroop task (CWST) performance, suggesting that the l-DLPFC neural activity led to higher EF. This interpretation has also been validated by other previous studies including our own. These results suggest that groove sensation and psychological state are important predictors, and these factors influence the effect of GR not only positively but also negatively.

The participants who were grouped in the “Groove-familiar” cluster experienced positive effects of GR on EF and l-DLPFC activity. Successful entrainment and body movement to a musical beat (rhythmic entrainment, sensorimotor synchronization) could be among the important factors for promoting the positive effects of GR. Generally, music induces positive affective responses and concurrently increases dopamine release and brain activation related to the reward system including the basal ganglia (BG), midbrain, and orbitofrontal cortex, whereas rhythmic entrainment reinforces both groove sensation and positive affective responses and recruits brain regions related to both the motor and reward systems through BG activity, which plays a key role in the connection of rhythmic entrainment and positive affective responses. That groove music recruits not only the reward system, but also the motor system indicates that the body and musical entrainment are the bases of inducing a positive affective response. In addition to recruiting the dopaminergic reward system, high-groove music also induces physiological arousal related to the noradrenergic system, which is part of the catecholamine system, inducing brain activation. A positive affective response involving the catecholamine system can trigger the enhancement of executive function (EF) and related DLPFC activity. Considering that both groove sensation and positive affective responses were together correlated with BG activity in a previous study and that the current data shows that both groove sensation and feeling clear-headed are influential factors in the effect on dorsolateral prefrontal cortex (l-DLPFC) activity and EF, we could postulate a relationship between rhythmic entrainment, psychological responses, the catecholamine system, and prefrontal function. Thus, “Groove-familiar” participants may have achieved successfully entrainment to GR, enhanced groove sensation and positive psychological states, and these psychological response may have triggered the release of neurotransmitters resulting in l-DLPFC activation and EF enhancement.

Conversely, the participants grouped in the “Low feeling clear-headed” and “Groove-unfamiliar” clusters experienced no or negative effects of GR on EF and l-DLPFC activity. One potential inhibiting factor is low beat-processing ability in those individuals. It is possible that participants who have a low beat-processing ability were forced to pay extra attention to the beat while listening to the GR. This may have resulted not only in inducing failure to become entrained, but also in reduced mental resources, which limited attention, motivation, and cognitive performance. In the current experiment, the average scores for the beat-processing ability test among participants in both the “Low feeling clear-headed” and “Groove-unfamiliar” clusters were relatively low compared to the participants in the “Groove-familiar” cluster, but not significantly so. Since the beat alignment test used in the current study was a simple battery test to evaluate beat processing ability, further studies using battery tests with a higher sensitivity are needed to detect the influence of inhibiting factors.

This study has several limitations. First, widespread individual differences in psychological responses to the rhythm were demonstrated in the current results. Various potential factors such as musical training experience, music reward sensitivity, beat processing ability, familiarity with groove music/dance, body morphology and cultural background could influence psychological responses to the rhythm. Though more than 50 students participated in the current experiment, the sample size was insufficient for conducting sub-analyses to seek the effects of these potential influential factors. Future studies should plan to compare the effects between participants grouped by these potential influential factors. Second, in the auditory stimulus, we used rhythm with a low to medium degree of syncopation as the GR stimulus and a white-noise metronome as the control stimulus. We could control tempo, but could not control the type and number of sounds. Further studies are needed to try to detect the influence of other acoustic specifications by using different patterns for the groove rhythm (GR) and control stimuli. Third, in the measurement of the brain’s neural activation, the current study focused on only cortical, specifically the l-DLPFC, activity. We should use fMRI and PET to examine brain activity in broader and deeper regions that are involved with motor, reward, and cognitive systems, their networks, and released neurotransmitters.

In conclusion, listening to a rhythm with low to medium syncopation enhanced executive function (EF) and dorsolateral prefrontal cortex (l-DLPFC) activity in only groove-familiar participants, which supports our hypothesis. These results suggest that individual differences in psychological responses to GR are one of the key factors in predicting the effects of listening to GR on prefrontal EF. This study raises the potential that GR can enhance human cognitive performance like exercise.

 

Source: nature.com, Takemune Fukuie, Kazuya Suwabe, Satoshi Kawase, Takeshi Shimizu, Genta Ochi, Ryuta Kuwamizu, Yosuke Sakairi & Hideaki Soya

Large-scale medical cannabis study led by FGCU will explore best CBD/THC ratio for treatment of anxiety

Large-scale medical cannabis study led by FGCU will explore best CBD/THC ratio for treatment of anxiety

According to data from the Florida Department of Health there are more than 645-thousand active patients currently eligible for medicinal cannabis in Florida. Qualifying conditions in Florida include things like cancer, epilepsy, glaucoma, seizures, PTSD, Parkinson’s disease, and anxiety.

And while multiple peer-reviewed studies have shown that cannabis can be effective in treating anxiety, much less is known about the specific ratios of cannabinoids that work best to alleviate anxiety symptoms. Cannabinoids are naturally occurring compounds found in cannabis. There are more than 80 of them, the most commonly known being THC and CBD.

Now, a new study led by Florida Gulf Coast University, Releaf App, and CannaMD hopes to further clarify just what ratios of cannabinoids best reduce anxiety symptoms. CannaMD is one of the largest networks of medical cannabis physicians in Florida.

Researchers will track patient-reported experiences while consuming medical marijuana purchased at dispensaries around the state. Participants will answer daily, standardized anxiety-related questions using their smartphones for a 45-day period to track details about their cannabis use and associated outcomes related to symptom relief and side effects.

The goal is to recruit up to 1,000 certified Florida medical marijuana patients.

 

Source: news.wgcu.org, Dr. Nate Pipitone, Jessica Walters

Passenger suffered epileptic seizure amid Dublin Airport weekend chaos

Passenger suffered epileptic seizure amid Dublin Airport weekend chaos

The passenger’s wife believes the stress of the situation triggered the seizure.

Monday night’s episode of Claire Byrne saw a guest state that her husband suffered an epileptic seizure during the chaos at Dublin Airport last weekend.

This follows the DAA (Dublin Airport Authority) confirming on Monday that over 1,000 people missed flights on Sunday due to large queues at the airport.

Claire Byrne Live’s final episode began with a discussion regarding the issues at Dublin Airport, with the host in conversation with some of the people who were there over the weekend.

Speaking to Byrne from Vermont in the US, guest Deborah described how her husband with epilepsy missed his flight back to the US on Saturday due to the queues.

She also said that she believes the stress of trying to get through security triggered a seizure for her husband.

“Absolutely it did. Stress can trigger epileptic seizures. He wears a medical alert bracelet. He carries medication with him,” she explained.

“But to have somebody queue in security for as long as he did, dehydration can cause it too.

“It was such a scene. It was really difficult for them to even figure out which queue to join.”

During this time, Deborah said she was speaking to her husband over the phone.

“He had finally gotten through security and yet had not made his flight,” she said.

“We were speaking on the phone… There was a group of people waiting for baggage and to be rebooked, they were already passed security but not through immigration.”

It was at this point that Deborah stated that she heard her husband say he was going to have a seizure.

“I was very concerned. Then I could hear him having a seizure. His language gets very garbled, he tries to speak but he can’t,” she said.

“I was trying to talk him through it. I was trying to get him to find someone to help him but he said: ‘There’s no one here. There’s no one to help’.

“I said: ‘Look for a security person or a first-aid person’. He finally was able to just lean up against a desk.”

Deborah told Byrne that her husband had family in Ireland who were able to collect him from the airport and take care of him in the evening but that he had to make it out of the building post-seizure by himself.

This was before he was able to board a flight back to the US on Sunday.

Speaking on RTÉ’s Morning Ireland on Monday, DAA’s Head of Communications Kevin Cullinane apologised for the issues passengers faced in the airport over the weekend.

Cullinane said the airport was operating at the max of its available staffing levels and on “very fine margins”.

“Yesterday morning when we opened security in terminal one and terminal two, we clearly didn’t have enough security lanes open due to resourcing challenges, and at the moment any absenteeism impacts on our ability to operate lanes,” he said.

 

Source: joe.ie, Sam Boal/Rollingnews.ie

The cause of infantile spasms may provide the key to novel treatments

The cause of infantile spasms may provide the key to novel treatments

A study of animal and human brains uncovered what causes infantile spasms and identified a hormone that could be used to treat and alleviate symptoms.

By studying the brains of infantile spasm (IS) patients and animal models, John Swann’s laboratory at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital (TX, USA) observed that the pathology of IS was associated with decreased levels of the hormone insulin growth factor-1 (IGF-1). When the IS animal models were supplemented with an IGF-1 analog, spasms and abnormal brain activity were prevented, providing hope for future treatment.

Fifty percent of epilepsy cases affecting infants in the first 12 months of life are attributed to IS; however, there is a dearth of treatment options currently available. This severe epileptic syndrome is diagnosed in 2500 babies annually in the United States and many infants will subsequently suffer from developmental delays, intellectual disabilities, and other types of severe epilepsy.

Swann’s team infused tetrodotoxin (TTX) in the cortex of the infant rat brain for a prolonged period to develop a brain lesion. This is an established method that enables the reproduction of the clinical characteristics of IS: spasms, brain wave abnormalities (hypsarrhythmia), and altered drug responsiveness. The animal models were then analyzed by long-term video electroencephalogram recordings and immunohistochemistry.

“As is expected after a brain injury, we saw an increase in IGF-1 levels in the non-neuronal support cells (aka glia) at the site of TTX infusion. However, we were most intrigued by the remarkable and widespread decrease in IGF-1 expression in cortical neurons in brain regions adjacent to or further away from the site of TTX injection – a phenomenon that had never been reported before,” Swann commented.

In addition, Swann’s team performed immunohistochemistry to examine cortical tissue from infants with IS, who had suffered prior perinatal strokes and required surgery to control their seizures, which exhibited strikingly similar relationships to the IS animal models.

“More importantly, we found this reduction in cortical levels of IGF-1 had significant consequences in IS animal models because it dampened the overall activity of the IGF-1 molecular signaling pathways that regulate many important biological processes involved in early brain development and neuronal function,” explained lead author Carlos Ballester-Rosado.

In order to confirm that IGF-1 levels play a pivotal role in IS, IGF-1 knock-out mice were treated with an analog of the IGF-1 protein, (1-3)IGF-1. This tripeptide is smaller than the complete IGF-1 hormone allowing it to cross the blood-brain barrier more easily. After administering the mice with (1-3)IGF-1, the spasms and hypsarrhythmia symptoms appeared to be less frequent or eliminated in the majority of the mice.

“Using several lines of evidence, we first confirmed that this IGF-1 tripeptide was capable of activating the IGF-1 signaling cascade in mice,” Swann added. “We then found – to our astonishment – that administration of IGF-1 successfully eliminated spasms and an IS-specific chaotic brain activity pattern called hypsarrhythmia in most of the IS animals. We are excited because these findings raise the tantalizing possibility that this IGF-1 analog can be used to treat IS patients in the future.”

 

Source: biotechniques.com, RYAN GILROY

Puppet performance educates families about epilepsy

Puppet performance educates families about epilepsy

Demmi Connonlly (left) and Darrel Stephenson showcase a puppet show that educates and entertains children about epilepsy. It runs at the International Children’s Festival of the Arts from June 2 to 5.

Children with epilepsy often face numerous personal challenges. There is the fear of repeatedly dealing with the physical effects of seizures, side effects from medication, and depression as well as learning and/or cognitive difficulties. And finally, there is the fear of peer rejection and social stigma.

That is a huge physical, emotional, and psychological burden for a child to carry. But they are not alone.

The Edmonton Epilepsy Association purchased a copyright to Kids on the Block, a puppet show that introduces Brian McDaniel, an 11-year-old boy who copes with seizures. The puppet show runs at the International Children’s Festival of the Arts from June 2 to 5 at St. Albert Public Library, Forsythe Hall.

Kids on the Block works to empower individuals dealing with fear, stigmas, teasing, and bullying. The show’s goal is to give children tools so they will feel safe, accepted, and supported. In addition, it offers onlookers ways of dealing with an unexpected episode.

Valeria Palladino, the association’s executive director, said that while epilepsy is the fourth most common neurological disorder in the world, it is the “first” most common in children. Roughly one in 100 people develop epilepsy. Based on a one-per-cent estimate, about 380,000 Canadians have epilepsy.

“Fortunately, many grow out of it — 50 to 60 per cent will grow out of it. Not all seizures are from epilepsy. If you have a seizure from a high fever, that is not considered epilepsy. Epilepsy is defined by multiple seizures. You must have two unprovoked seizures and there are over 40 types of seizures,” said Palladino.

As executive director, she heavily promotes Kids on the Block as an educational resource that makes it easy to learn and ask questions at a Q & A following the production.

“It’s positive and educational in building understanding. What we find most useful are the questions at the end. By asking a puppet questions, children feel very safe.”

Rabbi Barbara Aiello first developed Kids on the Block scripts in 1977 when the U.S. government passed a bill to expand inclusivity in schools, explained Palladino. Aiello structured the 45-minute scripts adapting the ancient Japanese puppetry form of Bunraku. The puppets are taller than a metre, hand-held, and rod-manipulated by puppeteers dressed from head to toe in black. The focus is completely on the puppets.

The association purchased the copyright to two scripts 17 years ago and has promoted them heavily in school settings. Kids on the Block debuts its first out-of-school show at the festival in the hopes of reaching a wider audience.

Darrel Stephenson, a freelance Edmonton actor who has amassed experience in film projects, radio, murder mysteries for corporate events, and medical projects, has voiced the lead character, Brian, since its inception. Two other actors lending their talents as school buddies are Demmi Connolly and Anthony Hunchak.

“The last two years we haven’t gone into schools due to the pandemic. Everything was done virtually online. It’s OK, but there is better interaction, better communication when it’s live. When you’re live, kids can come up after the show and ask questions without being embarrassed in front of their classmates,” said Stephenson.

Some may feel there’s a smidgen of disconnect when a grown man voices a Grade 5 student. However, Stephenson has borrowed techniques from some of the best animators and puppeteers, namely Mel Blanc (the voice of Bugs Bunny) and Daws Butler of Hanna-Barbera Productions.

“I don’t do voices. I do characters. Brian is an 11-year-old boy. He’s very real and has a very real problem. He’s not a puppet. He’s a character,” Stephenson explained.

But all the work is worth it when actors hear rustles and giggles coming from a live audience.

“When you hear the sound of a hundred kids moving into the audience, you’re jacked. The audience gives a performer feedback. It’s give and take. If the audience likes what you do, you can give more to them.”

All performances are free and drop-in only. Scheduled performances are listed on the website at www.stalbert.ca and posted at the festival site.

Source: stalberttoday.ca, Anna Borowiecki, VALLERIA PALLADINO/Photo

Time for employers to learn more about epilepsy

Time for employers to learn more about epilepsy

Lesslie Young on the challenges facing people with epilepsy

Last week, Epilepsy Scotland launched the #ExcelWithEpilepsy campaign during National Epilepsy Week. The aim of the campaign was to show that epilepsy or any other neurological condition does not have to stop people from doing amazing things.

We wanted to show that epilepsy does not always have to be a barrier or limitation and to increase awareness of epilepsy in the workplace and engage employers with information to better support people with epilepsy to find and retain secure employment.

In January 2022, we conducted a survey exploring epilepsy and employment. We received 68 responses, 90% of whom were either currently employed or had recently been in paid employment.

The survey revealed 73% of respondents felt their epilepsy had impacted their career choices. Moreover, 39% of respondents felt they had experienced discrimination in the workplace because of their epilepsy.

Currently, 81.3% of the non-disabled population in Scotland are in employment. For people with epilepsy this figure is only 36.9%.

We are eager to change those statistics. We are aiming to increase awareness of epilepsy in the workplace and engage employers with information to better support people with epilepsy to find and retain secure employment.

#ExcelWithEpilepsy campaign

Over the course of National Epilepsy Week, we shared stories from a variety of people who have epilepsy including comedian Jake Lambert who will be appearing in an hour-long show at the Edinburgh Festival in August which will be dedicated to his experiences of being diagnosed and living with epilepsy.

Also, we shared a story from professional footballer Leon Legge who shared how he manages his epilepsy whilst playing professional sport.

We wanted to inspire people living with epilepsy by sharing stories from people working in different industries who have had great success despite living with a neurological condition which affects 1 in 97 people in Scotland.

We also shared stories from members of our Youth Group and Wellbeing Group, looking at how they have adapted to living with epilepsy, how they have overcome various challenges and how our services have helped them.

For many people, epilepsy is a life changing condition. We know epilepsy can have a negative impact on people’s mental health, education, and employment opportunities.

We know there is a long way to go until we can get rid of the stigma which is associated with epilepsy and to improve the understanding of the condition amongst businesses, employers and in the workplace.

People with epilepsy should not be discriminated against because of their condition. There are ways for employers to support people who have epilepsy such as introducing reasonable adjustments.

For example, setting a fixed shift pattern for people who find their seizures are triggered by tiredness.

As we showed throughout National Epilepsy Week, epilepsy does not have to be a barrier or limitation. People with epilepsy can still excel despite their condition.

We encourage employers to see the benefit people living with epilepsy or any neurological condition can bring to their business and start learning and understanding more about one of the most common neurological conditions in the world.

For more information, about our #ExcelWithEpilepsy campaign, please go to our website at: www.epilepsyscotland.org.uk/national-epilepsy-week-2022

 

Source: tfn.scot, Lesslie Young

World Health Organization Unanimously Approves Plan to Improve Epilepsy Care, Reduce Stigma

World Health Organization Unanimously Approves Plan to Improve Epilepsy Care, Reduce Stigma

Newswise — On 27 May 2022, World Health Organization (WHO) Member States approved the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) at the 75th World Health Assembly in Geneva, Switzerland.

Four international organizations and 116 Member States spoke in support of the plan, which passed unanimously.

IGAP will address the challenges and gaps in providing care and services for people with epilepsy and other neurological disorders that exist worldwide and ensure a comprehensive, coordinated response across sectors.

“International League Against Epilepsy (ILAE) is grateful for the attention to the needs of people with epilepsy on part of the WHO, as well as to the Member States supporting its approval,” said J. Helen Cross, president of ILAE.

In November 2020, the Seventy-third World Health Assembly adopted resolution WHA 73.10 to develop IGAP in consultation with Member States. In January 2022, a revised draft was approved at the 150th session of the WHO Executive Board.

IGAP includes two global targets specific to epilepsy to be achieved by all Member States by 2031:

  • All countries will have increased service coverage for epilepsy by 50% from the current coverage in 2021.
  • 80% of countries will have developed or updated their legislation with a view to promoting and protecting the human rights of people with epilepsy..

ILAE has developed a 90-80-70 action cascade as part of its roadmap to support the urgently needed expansion of  health and care services for people with epilepsy. The aims of the action cascade are that by 2031:

  • 90% of people with epilepsy are aware of their diagnosis as a treatable brain disorder
  • 80% of people with epilepsy have access to affordable, appropriate, safe anti-seizure medication
  • 70% of people with epilepsy receiving treatment achieve adequate seizure control

“We look forward to working with all partners to achieve the IGAP targets, which will improve care and quality of life for people with epilepsy and their families,” said Dr Julie Hall, ILAE’s Executive Director.

Focus areas

To meet the global targets, IGAP includes proposed actions for Member States, the WHO Secretariat, and national and international partners in several areas:

Access to services for epilepsy – Approximately 70% of people with epilepsy can be seizure free with treatment. However, treatment gaps exist in every country in the world. The current treatment gap estimate is 75% in lower-income countries and is substantially higher in rural areas.

Engagement and support for people with epilepsy – People with epilepsy and their families are stigmatized and discriminated against as a result of the misconceptions and negative attitudes that surround epilepsy. This leads to human rights violations and social exclusion. In some settings, children with epilepsy may not be allowed to attend school; adults may not be able to find suitable employment or to marry.

Epilepsy as an entry point for other neurological disorders – Epilepsy can be secondary to other neurological conditions, such as stroke or traumatic brain injury. It also can occur along with other conditions; for example, 19% of people with epilepsy also have migraine, and about 26% of adults with epilepsy also have intellectual disability.

With support, the IGAP will help to strengthen the prevention, detection, care, treatment, and equal opportunities for people with epilepsy and other neurological disorders worldwide.

About epilepsy

  • Epilepsy affects people of all ages, genders, races and income levels.
  • Poor populations and those living in low- and middle-income countries bear a disproportionate disease burden which significantly impacts on economic and social development.
  • In many parts of the world, people with epilepsy and their families suffer from stigmatization and discrimination due to ignorance, misconceptions and negative attitudes surrounding the disease. They often face serious difficulties in education, employment, marriage, and reproduction.
  • The risk of premature death in people with epilepsy is three times higher than the general population. Important causes of death and injury include sudden unexpected deaths in epilepsy, status epilepticus, burns, drowning and suicide.
  • Excess mortality is higher in low- and middle-income countries and is associated with lack of access to health facilities, large treatment gaps, and a failure to address the potentially preventable causes of epilepsy.
  • Epilepsy often co-exists with and can be compounded by other comorbid health conditions, including other neurological disorders, necessitating a synergistic approach.

 

Source: newswise.com, International League Against Epilepsy

Seizure- or Epilepsy-Related Emergency Department Visits Before and During the COVID-19 Pandemic — United States, 2019–2021

Seizure- or Epilepsy-Related Emergency Department Visits Before and During the COVID-19 Pandemic — United States, 2019–2021

Summary

What is already known about this topic?

Seizures or epilepsy account for 1% of annual emergency department (ED) visits. Data on seizure- or epilepsy-related ED visits during the COVID-19 pandemic are limited.

What is added by this report?

Weekly seizure- or epilepsy-related ED visits decreased sharply during the early pandemic period among all age groups, especially children aged 0–9 years. The return to pre-pandemic baseline in this group was delayed until mid-2021, longer than other age groups.

What are the implications for public health practice?

These findings reinforce the importance of understanding factors associated with ED avoidance among persons with epilepsy or seizure, the importance that all eligible persons be up to date with COVID-19 vaccination, and the need to encourage persons to seek appropriate care for seizure-related emergencies.

Seizures, transient signs or symptoms caused by abnormal surges of electrical activity in the brain, can result from epilepsy, a neurologic disorder characterized by abnormal electrical brain activity causing recurrent, unprovoked seizures, or from other inciting causes, such as high fever or substance abuse. Seizures generally account for approximately 1% of all emergency department (ED) visits.

Persons of any age can experience seizures, and outcomes might range from no complications for those with a single seizure to increased risk for injury, comorbidity, impaired quality of life, and early mortality for those with epilepsy.

To examine trends in weekly seizure- or epilepsy-related (seizure-related) ED visits in the United States before and during the COVID-19 pandemic, CDC analyzed data from the National Syndromic Surveillance Program (NSSP). Seizure-related ED visits decreased abruptly during the early pandemic period. By the end of 2020, seizure-related ED visits returned almost to pre-pandemic levels for persons of all ages, except children aged 0–9 years.

By mid-2021, however, this age group gradually returned to baseline as well. Reasons for the decrease in seizure-related ED visits in 2020 among all age groups and the slow return to baseline among children aged 0–9 years compared with other age groups are unclear.

The decrease might have been associated with fear of exposure to COVID-19 infection in EDs deterring parents or guardians of children from seeking care, adherence to mitigation measures including avoiding public settings such as EDs, or increased access to telehealth services decreasing the need for ED visits.

These findings reinforce the importance of understanding factors associated with ED avoidance among persons with epilepsy or seizure, the importance that all eligible persons be up to date with COVID-19 vaccination, and the need to encourage persons to seek appropriate care for seizure-related emergencies to prevent adverse outcome.

NSSP collects deidentified electronic health record data from EDs and other health care settings. ED visit data are derived from a subset of approximately 71% of the nation’s nonfederal EDs (i.e., EDs not supported by the Veterans Health Administration or U.S. Department of Defense). Diagnosis codes from the International Classification of Diseases, Ninth RevisionClinical Modification (ICD-9-CM) and International Classification of Diseases, Tenth RevisionClinical Modification (ICD-10-CM), Systematized Nomenclature of Medicine, and relevant free-text reason for visit (chief complaint) terms were used to identify seizure-related ED visits (Supplementary Table, https://stacks.cdc.gov/view/cdc/117412) (Supplementary Box, https://stacks.cdc.gov/view/cdc/117573).

All analyses were restricted to EDs that reported consistently more complete data throughout the study period (January 1, 2019–December 31, 2021); 56% of EDs sharing data with NSSP met these criteria. CDC assessed trends by six age groups (0–9, 10–19, 20–39, 40–59, 60–69, and ≥70 years) and visualized age-specific trends of weekly seizure-related ED visits during 2019–2021. Using R (version 4.1.2; The R Foundation), CDC quantified change in mean weekly seizure-related ED visits during April 1–December 29 across 3 years: 2019, 2020, and 2021; results were stratified by age group and sex. Percentage change in mean weekly seizure-related ED visits was assessed by comparing 2020 data with corresponding data from 2019 and 2021. This activity was reviewed by CDC and was conducted consistent with applicable federal law and CDC policy.

All ED visits, including seizure-related ED visits, decreased among all age groups and among both males and females during the pandemic period April 1–December 29, 2020, compared with the corresponding period in 2019. The largest decline in seizure-related ED visits, noted as early as February 2020, was observed among children aged 0–9 years. During April 1–December 29, 2020, the number of weekly seizure-related ED visits declined by 16% overall to 19,824, from 23,588 during the same period in 2019.

Among children aged 0–9 years, the number of seizure-related weekly ED visits declined by 44% to 1,553, compared with 2,759 visits during the same period in 2019; overall ED visits among children aged 0–9 years declined by 56%, from 162,711 visits in 2019 to 71,131 in 2020. By the first week of 2021, the number of seizure-related ED visits among all age groups was close to respective pre-pandemic levels in 2019, with the exception of children aged 0–9 years, among whom the rebound to pre-pandemic levels was delayed until approximately week 25 of 2021.

To examine whether the decrease among children aged 0–9 years was associated with pediatric febrile seizure burden, a posthoc analysis was conducted. In children aged 0–9 years, febrile seizures accounted for approximately one third of all seizure-related ED visits in all 3 years (approximately 35%, 31%, and 33% in 2019, 2020, and 2021, respectively)

Discussion

In this study of trends in seizure-related ED visits during the COVID-19 pandemic, seizure-related ED visits during the initial COVID-19 waves declined among all age groups, especially among children aged 0–9 years. These findings are consistent with several other studies (68). In one analysis of U.S. ED visits during January 2019–May 2020, the number of weekly all-cause ED visits declined abruptly during March 29–April 25, 2020, along with a decline in ED visits among children aged 0–9 years attributable to common conditions, including influenza, otitis media, upper respiratory conditions, asthma, viral infection, respiratory symptoms, and fever. International studies have described a reduction in seizure-related ED visits among children during the COVID-19 pandemic, with one study reporting a notable decline in febrile seizure–related ED visits among children aged 0–6 years.

The percentages of ED visits attributable to febrile seizures among children aged 0–9 years in this study were relatively stable, therefore any changes in ED visits for febrile seizures during the study period were unlikely to explain the overall change of trend in seizure-related ED visits in this age group. Researchers in Italy examined selected causes for seizure-related ED visits during February 23–April 21, 2020 (e.g., first episode or breakthrough seizure), but could not attribute the observed decrease in seizure-related ED visits to seizure type (e.g., febrile versus first episode seizures). However, a limitation of the Italian study was small sample size; thus, the findings warrant additional study. The findings related to febrile seizure–attributable ED use in the current report differ from, but supplement growing research in this area.

In the present study, school closures and the need to shelter at home could have facilitated heightened supervision of children while at home, including increased monitoring and promotion of healthful behaviors reducing seizure risk (e.g., medication adherence and regular sleep) or seizure sequelae (e.g., injury), thereby reducing the need for ED care. The decrease in weekly seizure-related ED visits among children aged 0–9 years might also have been associated with concern about risk for COVID-19 in EDs, deterring parents or guardians from seeking care for their children. It is also possible that expanded access and increased use of telehealth facilitated triaged telephone support or virtual health care encounters, especially for children with epilepsy and high-risk comorbidities, otherwise obtained in EDs. Additional studies are warranted to determine whether decreased in-person ED care for children with seizures or epilepsy during the initial COVID-19 pandemic was associated with any differences in risk for infection, injury, or delayed care, seizure type, or other factors and any associations between these factors and adverse outcomes.

The findings in this report are subject to at least four limitations. First, because NSSP coverage varies both within and across states, NSSP data are not nationally representative. In some states nearly all hospitals report, while in others only those in certain counties or health care systems report. Thus, these findings might not be generalizable. Second, differences in availability, coding practices, and reporting of chief complaints and discharge diagnoses from facilities might influence trends. To limit the impact of changing data volume and underlying data quality on results, only data from hospitals with consistent reporting and more complete data were included in this analysis. Third, trends displayed are restricted to ED visits only, and do not capture treatment sought for seizures in other settings. Finally, distinguishing initial seizure-related visits from subsequent visits was not possible, therefore the numbers of ED visits reported might represent multiple visits by one person.

These findings reinforce the importance of understanding factors associated with ED avoidance among persons with epilepsy or seizures, and any alternative care approaches among persons with epilepsy or seizures and the need to encourage persons to seek appropriate care for seizure-related emergencies. Vaccination against SARS-CoV-2, the virus that causes COVID-19, of all age-eligible persons, including those with epilepsy, is recommended to protect against the adverse effects of COVID-19.

 

Source: cdc.gov, Kathleen Hartnett, Michael Sheppard, Jonathan Wortham

Opinion  If Roe falls, more women will be prosecuted for miscarriages

Opinion If Roe falls, more women will be prosecuted for miscarriages

About 10 years ago, a longtime state medical examiner in Texas and Mississippi told me something that has stuck with me ever since. He said there’s a type of prosecutor who believes that innocent babies just don’t die on their own. “They don’t believe in accidents,” he said, “especially when the parents are poor. Someone must be at fault. So someone has to pay.”

 

It isn’t hard to find cases to back up his theory. I’ve previously written about Hattie Douglas, a Mississippi woman who was arrested and jailed for a year for killing her infant son with alcohol poisoning until a lab concluded a medical examiner had botched the test results. There’s Sabrina Butler, who spent two years on death row for murdering her infant son, until doctors later concluded the baby likely died of kidney disease. Jeffrey Havard is still serving a life sentence for killing his girlfriend’s 6-month-old, despite multiple affidavits from medical professionals concluding the forensic evidence against him was junk science. In 2012, a Georgia woman was convicted of vehicular homicide after her 4-year-old son was killed by a hit-and-run driver, because she and her son were jaywalking at the time.

Other medical examiners and defense attorneys have since echoed the sentiment, pointing to cases in which prosecutors utilized scientifically dubious expert testimony to secure convictions after a baby has died. Many point to shaken baby syndrome, a diagnosis that swept through the criminal legal system in the 1990s. The diagnosis has since come under fire in the scientific community, but it’s still given weight in much of the country, including Mississippi, where just last year the state’s Supreme Court voted 5 to 4 to uphold a conviction based on the theory.

It’s against this history that criminal defense and civil rights groups have expressed alarm over Justice Samuel A. Alito Jr.’s leaked draft opinion that would overturn Roe v. Wade. If some prosecutors already believe babies don’t die without criminal culpability, it stands to reason that as state legislatures push fetal personhood back to fertilization, the same logic will be applied to miscarriages. Women who miscarry could be investigated for using alcohol, tobacco, or illicit drugs, or engaging in other behavior prosecutors deem risky.

In fact, this is already happening. In 2007, a Lowndes County, Miss. grand jury indicted Rennie Gibbs with murder after a stillbirth when traces of a cocaine byproduct were found in her blood. In 2020, an Oklahoma woman was charged after methamphetamine was found in her system (despite a medical examiner’s conclusion that it played no role in the miscarriage). In 2019, an Alabama woman was charged with manslaughter for starting an argument with another woman, who then shot her, killing her fetus.

But those are merely the cases that have received national attention. According to the National Advocates for Pregnant Women, between 2006 and 2020 more than 1,300 women were arrested, detained, or otherwise physically deprived of liberty for reasons related to a pregnancy. In some cases the women were charged for unintentionally harming the fetus, typically through the use of alcohol or illicit drugs. In others, prosecutors alleged the women had intentionally tried to induce an abortion

One study of more than 400 arrests or other “forced interventions” by the state on pregnant women found that more than half the women were Black, and about 7 in 10 were poor enough to qualify for a public defender. There was also wide geographic disparity. Just 10 states accounted for more than two-thirds of the cases, and nearly 8 in 10 came out of the South or Midwest. South Carolina alone represented 23 percent of the cases and, incredibly, 7 percent originated from a single South Carolina hospital.

At least 38 states currently have laws granting legal protections to fetuses. In 29, those protections kick in shortly after fertilization. But under Roe and subsequent cases, harm that befalls the fetus during a legal abortion is exempted. (In fact, the study mentioned above found that many prosecutions were already in direct defiance of federal court rulings.) But if Roe falls and states make abortion illegal, those exceptions will no longer apply. In states that put personhood at fertilization, any pregnancy that doesn’t result in a live birth could be subject to scrutiny and possible prosecution.

According to the Centers for Disease Control and Prevention, about one-quarter of all pregnancies end in miscarriage, and about 1 in 3 women will experience one.Under a legal regime in which medical abortion is illegal, some women will inevitably try to end their pregnancies themselves. They may be targets of prosecution. But because of that, a larger percentage of women who involuntarily miscarry will likely be suspected and targeted, too.

Here, too, the prosecutions will no doubt be disproportionate. Due to malnutrition, access to medical care and other factors, poor and non-White women are more likely to miscarry. They’re also more likely to have unplanned pregnancies. If these prosecutions become more common, poorer women will be less likely to seek medical care when something goes wrong (especially since many of these prosecutions rely on tips from health-care workers), meaning more miscarriages, bringing yet more suspicion. In states such as Texas and Alabama there are already reports that physicians and pharmacists are declining to treat miscarriages in fear of a lawsuit or prosecution.

The fear here isn’t that states will explicitly make miscarriage a crime. It’s that once abortion is illegal, women who do miscarry will be investigated for ending their pregnancies intentionally. Their lifestyles and decisions will be scrutinized. They’ll be prosecuted for things such as addiction, malnutrition or failing to seek medical care. History suggests that the women most suspected will be disproportionately non-White, and they’ll overwhelmingly be women who lack the means and the platform to defend themselves.

Source: washingtonpost.com, Radley Balko

Murray on Morning Live with Martin Kemp

Murray on Morning Live with Martin Kemp

It’s not every day you get asked to share your epilepsy story on Morning TV, let alone get to meet one of your musical heroes! For Epilepsy Action media volunteer Murray, it was all in a day’s work when he got the call to feature in a BBC Morning Live film, fronted by Martin Kemp (Spandau Ballet/Eastenders).

Murray has been working with the research team at Kings College London to trial the UNEEG SubQ device – a small, implantable device which is fitted under the skin. It is constantly monitoring seizure patterns to give people like Murray more detailed information to help them better understand and predict their seizures.

This National Epilepsy Week, Murray gives us a behind-the-scenes look at his Morning Live experience and shares his words of inspiration and support about living with epilepsy.

Hi, it’s Murray here.

I was recently asked if I would like to be interviewed by the BBC’s Morning Live programme about my epilepsy and the SubQ implant that records and measures the data on my seizures. I was happy to help.

At first I was told I was going to be interviewed at King’s College where the surgery took place, by none other than Martin Kemp, 80’s pop legend! This was a dream for me, one because I am a massive music fan of that era – I still remember sitting on the floor as a boy watching Martin striding across Wembley Stadium playing Bass at Live Aid ’85 with Spandau.

Things got a bit madder when the producer phoned me back and told me that Martin said that he wanted to interview me at my house.

Wow, so I’ve been to hundreds of gigs, met lots of my heroes, have so much memorabilia from over the years. But now, one of them is coming to my house, because he wants to speak to me, about my condition?

Martin was completely down to earth, incredibly humble and took his time to talk about our experiences of epilepsy, the side-effects and medications. He wasn’t a celebrity that day – we were two guys sharing our epilepsy stories and he knew his stuff. I really admired his attitude and positivity.

It was amazing seeing the first 100 days’ worth of data on screen for the first time at King’s College with Martin and Professor Mark Richardson, who headed up the SubQ project. It showed the seizures, which lasted longer than I thought, but also other seizures I hadn’t seen, and even muscle movements. The science behind this is incredible and I’m confident it will change – and save – lives.

My friends and work colleagues were jealous about me meeting Martin, especially the ladies! But ultimately all were happy that the message was going out and everyone backed me, and they continue to do so.

The SubQ itself has become part of me now. It doesn’t feel like it’s there anymore. I can’t believe it’s been just over six months since I had it fitted. To think there’s a 10cm wire running the length of my temporal lobe, yet it’s invisible and taking in all that information, 24 hours a day. To anyone else, the wire looks like it could be connected to my headphones when I’m listening to my music. It really isn’t noticeable and looks like I’m wearing some futuristic MP3 player.

Sure, it took a little while getting used to locating the sweet spot when connecting the outer pad to the embedded disc, but it’s second nature to me now. I’ve caught it a couple of times in my sleep, but it doesn’t hurt. I just reconnect and I’m ready to go again. I can’t really break it. There’s only simple rule I need to follow – don’t get it wet. For anyone living with epilepsy, you download the data like taking your medication. It’s part of the plan of looking after your health. A digital diary of sorts and a million times more accurate because your brain is doing all the work.

On the day of the operation, I was both nervous and excited, but probably more of the latter. I had so many questions. Would it hurt? Why was I doing this? Would it help me? Would it help others? Will it tell me anything about myself?

After my first review recently, I got the answer to my final question. This device really works. Going forward, algorithms will be able to predict what seizures may come before they even happen to me. Incredible. I think the device itself will make a change to my life because, after 26 years of living with epilepsy, it will finally tell me the story of my condition over longer periods. It is constantly being monitored. I recently had a fall and hurt my back during a seizure. It has only happened 3 times in my life, but this time I was wearing the SubQ, so I feel like I have captured it and I will find out what was happening in my brain at that moment and why it happened.

I think that I need to tell people about epilepsy so they feel comfortable around me. I don’t want them to be scared should something happen. I also want them to be educated, and it ensures my safety should something happen. I thank Epilepsy Action for allowing me the opportunity to magnify the message to a wider audience.

If I were to give any words of wisdom, it would be to make sure that you live with and own your condition as much as you can. Don’t let it be the other way around. Talk to people about it. It really helps. I have come to accept that Epilepsy is part of who I am. It always will be. I don’t fear it, I embrace it. I used to be scared but I can’t live like that anymore because it will make me ill in other ways. I cannot be cured, but I hope that what I have to share will, someday, save someone else. That is my only wish.

 

Source: epilepsy.org.uk

What to Expect with Absence Seizures

What to Expect with Absence Seizures

An absence seizure is a generalized onset seizure, which affects both sides of the brain at the same moment. During an absence seizure, you lose awareness of your surroundings.These seizures can cause a person to stare blankly, as though they are daydreaming. They may last around 15 seconds and can occur several times per day.

This article explains the causes, symptoms, and treatment options related to absence seizures. It also covers epilepsies characterized by absence seizures and their management.

What is an absence seizure?

Doctors may categorize an absence seizure as typical or atypical, according to the Epilepsy Foundation. They are brief and do not involve large movements or changes in muscle tone, unlike motor seizures, such as generalized tonic-clonic seizures.

Typical absence seizures

Typical absence seizures are more common than atypical absence seizures and usually last less than 10 seconds. Symptoms can include:

  • stopping all activity, with the person possibly stopping talking mid-sentence
  • staring into the distance
  • having a blank look on the face
  • eyes looking upward
  • eyelids fluttering
  • not responding to anything, or impaired awareness

Atypical absence seizures

Atypical absence seizures last 20 seconds or longer, and they start and end slower than typical absence seizures. The symptoms include those of a typical absence seizure but include more movements, such as:

  • smacking the lips
  • chewing movements
  • hand motions and fidgeting
  • limp muscles
  • moving around
  • responding to the environment

After a seizure of this type, you are likely to continue the activity you were doing before the seizure and may not be aware that you had a seizure. However, if you have many seizures throughout the day, you may be confused. You may not follow what has been going on around you.

What causes absence seizures?

Seizures are due to alterations in electrical activity in the brain. Doctors can measure these changes with an electroencephalogram (EEG). An absence seizure is marked by a generalized and rhythmic 3-Hertz spike-and-wave EEG pattern.

Often, doctors cannot find the specific reason for the absence seizure.

However, absence seizures may have a genetic link. Absence seizures are hallmarks of at least the following genetic epilepsies:

  • childhood absence epilepsy
  • juvenile absence epilepsy
  • juvenile myoclonic epilepsy
  • Lennox-Gastaut syndrome

The genetic disorder glucose transporter type 1 deficiency syndrome can also cause absence seizures. This is because the brain is not getting enough glucose, which it needs for energy.

Triggers

Various things can trigger seizures, in general, and these can vary among people. Some triggers include:

  • not taking your seizure medications consistently
  • not getting enough sleep
  • drinking alcohol
  • withdrawing from some medications or alcohol
  • taking medications that may interfere with your seizure drugs

 

How do doctors diagnose absence seizures?

An EEG helps diagnose the type of seizure. If the doctor needs to bring about a seizure to record by EEG, they may ask a child to hyperventilate for 3–4 minutes while they count out loud, with their eyes shut. This can bring on an absence seizure in over 9 in 10 children with childhood absence epilepsy.

The doctor will also ask you about your or your child’s absence seizures. They will need clear details of what happens during the seizures. The more specific you can be, the easier it will be for your doctor to make the correct diagnosis.

Genetic tests may also be a part of the diagnosis when the doctor suspects a genetic epilepsy syndrome.

Getting an accurate diagnosis is important because absence seizures can be misinterpreted as focal impaired awareness seizures. This type of seizure begins in one side of the brain and, like an absence seizure, may or may not involve movements. In addition, a doctor may misdiagnose an absence seizure as a staring spell, which does not involve changes in brain activity.

The doctor may diagnose epilepsy if the absence seizure is followed by a second one more than 24 hours later or if there is a 60%-or-higher chance of a second one.

How do you treat absence seizures?

If someone is having an absence seizure, stay with them and try to steer them away from anything that may cause them harm. Note the details about the seizure, including how long it lasts, as this information can be useful for diagnosis and the ongoing management of absence seizures.

You or your child may not need treatment, especially if the seizures are rare. However, if the seizures are frequent, a doctor may prescribe a medication. The medication works by stabilizing the electrical activity in your brain. Commonly prescribed medications include:

  • ethosuximide (Zarontin)
  • lamotrigine (Lamictal)
  • valproic acid (Depakene)
  • divalproex sodium (Depakote)

How long you or your child may need this medication will vary. You may need to try different combinations of medications or various dosages to manage the seizures. Some childhood absence epilepsies resolve in adolescence. However, lifelong treatment may be necessary.

Self-care and diet for absence seizures

Avoiding known triggers is another way to treat absence seizures. Make sure that you or your child is getting enough sleep and eating meals regularly.

Talk with a doctor about dietary therapy for epilepsy. There is some evidence to suggest that a ketogenic diet can help manage seizures. The keto diet is high in fats and low in carbohydrates, which provides more energy for the brain. A medium-chain triglyceride (MCT) diet is more flexible than a keto diet and may also help. An MCT diet includes more carbohydrates and proteins and incorporates MCT oil, which is a type of fat.

What are some coping tips for absence seizures?

You can live a full and active life with some absence epilepsies, especially with the support of medications and self-care. However, you or your child may need support in various areas of your life. Specific recommendations depend on the age of the person who is experiencing seizures. Here are some general tips:

  • Communication and socializing: Talk with your child about their seizures and ensure that they get an opportunity to ask questions. Encourage them to safely take part in activities, build routines, and enjoy spending time with their family members and friends.
  • Education and employment: Educate your child’s teacher and school nurse about your child’s seizures. If you are affected and you work, talk with your employer to ensure that you are safe while working. Keep in mind that the Americans with Disabilities Act covers epilepsy, according to a 2013 document from the U.S. Equal Employment Opportunity Commission.
  • Bullying and discrimination: There can be a stigma attached to having seizures. Ask your child’s teacher to talk with the class about seizures and what to do if someone has one. If you have seizures, talk with your colleagues and friends.
  • Self-care: Getting enough sleep, eating regular healthy meals, and following a keto diet may help reduce your risk of experiencing a seizure. You may also need support with managing stress or anxiety.
  • Driving: Check with your local state regarding the laws for driving if you have seizures. You may wish to use public transport instead.
  • Online information and support groups: Connecting and talking with others who have seizures can be both helpful and reassuring. Some support groups include:
    • Epilepsy Foundation
    • American Epilepsy Society
    • International League Against Epilepsy

What is the outlook for someone with absence seizures?

The outlook for people with absence seizures and epilepsy depends on the specific type of epilepsy and seizures the person experiences. Around 7 out of 10 people with childhood absence epilepsy will have their absence seizures under control with epilepsy medications, according to Epilepsy Action.

Absence seizures usually stop by adolescence for 57–74% of children with

childhood absence epilepsy. It is rare for absence seizures to continue into adulthood.

Other frequently asked questions

Here are some other questions that people have asked about absence seizures.

Are absence seizures dangerous?

Even though they are brief, absence seizures can be dangerous when they occur during a particular activity, such as bathing, swimming, climbing, or driving. In addition, children who experience absence seizures often have impaired attention and memory.

Who gets absence seizures?

Absence seizures occur in children more frequently than in adults. Children are usually ages 4–14 years when they start having seizures. Females tend to experience absence seizures more than males.

How often do absence seizures occur?

Absence seizures can happen regularly and frequently — from 10 to more than 30 times per day.

Can you prevent absence seizures?

You may be able to reduce the frequency of your absence seizures by avoiding your triggers, taking your prescribed medications, and sleeping and eating well.

Summary

Absence seizures occur when someone loses awareness of their surroundings for around 15 seconds. The seizures are defined by a rhythmic spike-and-wave pattern on an EEG. These seizures can occur many times per day.

Absence seizures are associated with certain types of epilepsy that tend to affect children.

Taking medications and avoiding known triggers can help reduce the frequency of absence seizures.

 

Source: healthgrades.com, Rebekah Louise

A brain tumour left my child with epilepsy

A brain tumour left my child with epilepsy

Roux Owen was just four weeks old when he was diagnosed with a rare brain tumour. He underwent extensive treatment and now lives with the effects of the disease, including epilepsy. This National Epilepsy Week, his dad Antony describes the impact it has had on the family.

Roux isn’t even three yet and he’s undergone more than 10 surgeries, has a shunt, has been left blind in his left eye, has development delays and is at continued risk of tumour regrowth. On top of all that, he also has epilepsy.

Roux’s first seizure came off the back of one of his surgeries when he was three or four months old. He didn’t have another for a while, but they started again around eight months later. He’s been on various different medications and they’ve tried upping the strength of his medication, but his seizures have got worse. We’re currently investigating further, potentially building up to surgery which would hopefully make his seizures less frequent, or possibly even stop them altogether.

We’re struggling with the idea of putting Roux through more surgery if we end up going down that route. We don’t want to lose any more of him. If Roux came out of surgery with more brain damage, I don’t know if I could forgive myself.

I don’t think people are aware of how many ways a seizure can present itself and I still find it difficult to understand what kind Roux is having. He’s had absence seizures. He’s been unconscious and had full-on convulsive seizures. He had one where he was wide awake with his arm twitching and he was trying to stop it with his other arm. There was one occasion where he took a sharp intake of breath and just stopped moving. I thought he was gone. It was terrifying.

That’s one reason I’m so keen to share Roux’s story. To raise awareness of the fact that epilepsy doesn’t just take one form.

My wife Amy and I are getting better at spotting the signs of a seizure. When they first started, we were getting up every hour in the night, taking it in turns to check on Roux. It was absolutely exhausting.

We’ve bought a video monitor, as well as heart rate and oxygen monitors. We keep a constant eye on him. After Roux goes to bed, we sit on the sofa surrounded by these monitors, watching him on the iPad to check he’s ok.

At the moment, I’d say Roux’s epilepsy is harder to deal with than his brain tumour recovery. At least with his brain tumour, we know when the next MRI scan will be. We know that if there are any signs of growth, we’ll treat it. But there’s no rhyme or reason with his epilepsy; his seizures are so unpredictable. I’m terrified he’ll die in his sleep.

Despite everything he’s been through, Roux is such a happy little boy. He’s very talkative with the noises he can make and is showing signs of crawling. He gets frustrated sometimes and it’s horrible that we can’t explain to him what’s happening. I think it will get harder when he gets older.

It also affects his big brother Noah. He knows Roux has a ‘poorly head’ but we try and protect him from the rest of it. Thankfully, Noah has never seen Roux have a seizure, but he sometimes asks questions like why can’t Roux walk yet when his friends’ younger siblings can. It’s tough but he’s getting some great support at school.

The boys have an amazing relationship. Noah is so good with Roux, who follows him everywhere. Roux’s favourite thing is to go on the swings in our garden and Noah will push him or swing next to him for hours.

Amy started using Instagram to share Roux’s journey. She set up the @RouxsArmy page and it really helped her. It was a way to compartmentalise what was happening with Roux’s brain tumour journey and to move forward.

When you have a poorly child, people tend to deal with it one of two ways. Some people will stop contacting you because they don’t know what to say. Others are constantly asking for updates and you find yourself sending the same message over and over again. Social media is a way to keep everyone updated.

I also use Twitter to update people on Roux’s situation and to raise awareness. Connecting with others who’ve gone through something similar is a comfort and it gives me hope. People tell me about their child who was diagnosed with a brain tumour at a similar age to Roux and the things they have gone on to do, like graduating from uni.

We don’t know what Roux will go on to do, but having that hope is so important.

I receive messages from people from around the world telling me that Roux’s story has helped them put their own life into perspective. It’s touching to know that Roux gives others hope too.

We do have bad days when we ask ‘why us?’ Sometimes it can feel like we have no luck, and it’s easy to wallow. But those connections I’ve made help with that too. I think of those who have lost their lives to this disease – especially young people – and I realise that, despite everything we’re going through, we are lucky.

We still have Roux.

 

Source: braintumourresearch.org, Antony Owen

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