She suffered 30 seizures a day. A new treatment and a robot helped them go away

She suffered 30 seizures a day. A new treatment and a robot helped them go away

Arfa Rana · CBC News · 

Makayla Douglass was the first patient in Canada to undergo Radiofrequency Thermocoagulation treatment


Makayla Douglass is a soft-spoken 11-year old who loves the colour blue, plays the clarinet and will soon be singing in an upcoming school concert.

But unlike other pre-teens, Makayla was diagnosed with epilepsy when she was one and was suffering up to 30 seizures daily.

Epilepsy is one of the the most common paediatric neurological conditions, impacting one in every hundred children, according to the physicians treating the London, Ont. girl.

Last year, Makayla became the first patient in Canada to undergo a new procedure to treat her seizures using a state-of-the-art robotic arm.

“It was a very bumpy journey,” said Dr. Andrea Andrade, director of the pediatric epilepsy program at Children’s Hospital at the London Health Sciences Centre.

The new procedure is called Radiofrequency Thermocoagulation, and it uses radio waves through electrodes to heat and destroy tissue in the brain that are sources of seizure activity. The minimally invasive procedure was done with the help of ‘ROSA One Brain’, the name given to a new robotic arm.

“This newer procedure, using the robotic arm, is less scary for patients and their families because it is all done through electrodes in a controlled manner. It is also minimally invasive with an amazingly fast recovery time, compared to an open skull surgery,” says Dr. Andrade.

Nurse wearing her scrubs touches red and white technology.
The robotic arm guides surgeons during open surgery to help them map the area where the seizure is coming from. (Arfa Rana/CBC)

The first time it was performed on Makayla, her seizures were reduced by 70 per cent, prompting her family to allow for a second attempt. That was six month ago, and she has not had a seizure since.

“We can sleep again, just be at peace knowing we don’t have to run a few seconds notice to keep her safe,” said mother Jeannie Douglass who notes the seizures were mostly happening at night.

The robotic arm was donated by the Children’s Health Foundation last year. Dr. Andrade said hopes that other hospitals will have the means to purchase a robotic arm so the procedure will be more available to patients across Ontario.

Woman with short, curly black hair and thick-rimmed blue glasses smiles.

Dr. Andrea Andrade is the director of the pediatric epilepsy program at children’s hospital at the London Health Sciences Centre. (Arfa Rana/CBC)

“Prior to the surgery, we weren’t sure what Makayla’s life would look like as an adult. How would she function?” said dad Jeff Douglass. “And so we really see a way to go forward where she can live a full life and have a good quality of life.”


Medical cannabis linked with weekly seizure reduction in epilepsy

Medical cannabis linked with weekly seizure reduction in epilepsy

Key takeaways:

  • Researchers analyzed health records of 112 individuals with epilepsy given medical cannabis.
  • Most study participants chose cannabis with concentrations of CBD and THC.

ORLANDO — Adults with epilepsy who were given medical cannabis recorded a significant decrease in weekly seizure frequency, according to a poster from the American Epilepsy Society annual meeting.

“There is little data on the effects of THC and seizure frequency, so we are trying to analyze the change in patients in our state program,” Xintian Lyu, BS, a student in the department of experimental and clinical pharmacology at the College of Pharmacy at the University of Minnesota, told Healio during the presentation.

Source: Adobe Stock.

According to research from the University of Minnesota, medical cannabis was linked to reduction of weekly seizure frequency for those with epilepsy.


Given the lack of dosing recommendations for medicinal cannabis such as Epidiolex, Lyu and colleagues sought to examine changes in seizure frequency for those with epilepsy given cannabis with higher concentrations of cannabidiol (CBD) or tetrahydrocannabinol (THC) from the medical cannabis program created in the state of Minnesota.

Their study collected data from the Minnesota Department of Health and Vireo Health records from 2016 to 2019, which included 112 adults with epilepsy (54.5% male; 70% aged 18 to 64 years) who had at least four visits with a treatment for at least 6 months and who may or may not have been prescribed antiseizure medications (ASM).

The primary outcome for the study was changes in weekly seizure frequency from baseline to the final visit depending on whether a participant increased, decreased or declined to change their total daily cannabis dose. Secondary outcome was the number of participants who utilized cannabis alone or in concert with ASMs.

According to results, 57 participants reported decreases in weekly seizure frequency, 45 enrollees reported no change including 34 with zero frequency at both baseline and final visit, while 10 patients reported seizure frequency increase.

In all three frequency groups, participants were dispensed both CBD and THC and a significant difference was reported in CBD total daily dose among those who recorded either a decrease or no change in seizure frequency (P = 0.019).

“We also found that 30 patients relied on cannabis only to manage their seizures, although most (of the study population) were taking one to five antiseizure medications,” Lyu told Healio.



Lyu X, et al. Medical cannabis and seizure control in Minnesota medical cannabis program. Presented at: American Epilepsy Society annual meeting; Dec. 1-5, 2023: Orlando.

Stigma in Epilepsy in 2023: How Far Have We Come?

Stigma in Epilepsy in 2023: How Far Have We Come?

In recent conversations with experts in epilepsy, the impact of stigmatization remains high for patients and ongoing efforts by clinicians to address this issue in the clinical setting has been underscored, despite the global lack of awareness about new treatments and other resources.

Epilepsy, a condition characterized by a lasting predisposition to generate spontaneous epileptic seizures, has several neurobiological, cognitive, and psychosocial effects that impact patients.1 One of the psychosocial effects, stigmatization, is a major contributor to the burden associated with the condition and it can also affect the families of those with the seizure disorder.2 Although there have been advancements in therapies to improve patient outcomes to, in turn, help improve the quality of life of patients and reduce stigma, it is still prevalent in many parts of the world.

There seems to be a lack of awareness of the treatment options that are available for patients and also of knowledge of resources to help patients who feel stigmatized in living with the condition. Despite this, the field of epilepsy has expanded its research in hopes of enhancing the lives of patients and reducing stigma. In recent conversations with NeurologyLive® over the course of the year, clinicians provided their insight on what stigma currently looks like, how it impacts the patients, and how to address it in the clinical setting.

Enacted and Felt Stigmas

There are 2 types of stigma that patients with epilepsy experience—“enacted stigma,” which refers to episodes of discrimination against patients with epilepsy; and “felt stigma,” which refers to the shame associated with being epileptic and the fear of enacted stigma.3 Thus, stigma does not only materialize in the form of other people’s feelings against a patient, but it also occurs in the feelings of the patients themselves. For the patient, the feeling of stigmatization may have manifold negative effects such as social isolation, low self-esteem, reduced quality of life, and worsening of seizures.4

These feelings, like having a low self-esteem, may stem from losing independence with certain activities such as driving, which can be dangerous to some patients if they have a seizure behind the wheel. In a review published in Epilepsy Currents, lead author Allan Krumholz, MD, the director of the Epilepsy Center and professor of neurology at University of Maryland School of Medicine, observed that driving is an important concern for providers who care for patients with epilepsy, enacting a desire for them to be well informed about relevant issues to properly manage their patients and protect themselves against lawsuits.5 The ability to not be codependent on others is a large part of feeling a higher quality of life for some patients with epilepsy, which, in turn, can reduce their feelings of stigma. Although, one solution is the use of new and effective antiseizure treatment to reduce the occurrence of seizures, and thus increase a patient’s ability to feel more confident in their own activities, such as driving.

“Many patients find having seizures, particularly if they’re uncontrolled, stigmatizes them because it limits their opportunities at work, sometimes socially, they’re not able to drive off. There’s an adverse effect of having seizures of stigma because you’re in some way not able to take opportunities to drive, to socialize in the same way. Sometimes patients with recurring seizures, lose confidence or have mood problems,” Gregory Krauss, MD, professor of neurology at Johns Hopkins University School of Medicine, told NeurologyLive.

“All these things can set patients aside from what they potentially could do,” Krauss continued. “I think it’s very important for patients not to give up and realize there’s new treatments, potentially curative surgery, potentially curative, or new therapies that can make them seizure free. All those things that can be used to minimize adverse effects, get rid of the seizure, stop them completely, that can remove stigma because the epilepsy is controlled. I think that should be the goal, no adverse effects, no seizures, that will reduce stigma.

Krauss described a patient who was experiencing several seizures every month that impacted not only his daily work on a farm, but his confidence in social circles; his wife would drive him to meet with friends for dinner, and they would switch seats once arriving at the restaurant so it would appear he had driven himself.

“He’s now seizure free for about 6 years on a new treatment,” Krauss said. “He has confidence, he farms, and he drives. He’s also teaching his kids to drive. These things really help in terms of minimizing stigma, which is to control seizures, and not to suffer adverse effects as you’re doing it. But certainly, some people do not have controlled seizures, and it’s just a medical condition. It doesn’t constitute who the patients are. It’s something to be dealt with and move on, try to be part of normal activities with some limitations such as driving.”

Nonpharmacologic Approaches to Stigma Reduction

Reducing stigma among patients with epilepsy does not have to always be done through effective pharmaceutical approaches, it can also be done through other ways such as behavioral and physiological interventions. In a systematized literature review published in Epilepsy & Behavior conducted by lead author Payal Chakraborty, PhD, postdoctoral research fellow in the department of population medicine at Harvard Medical School, and colleagues, 4 broad categories of stigma interventions were identified by the investigators. These categories included public awareness interventions, policy-based interventions, school-based interventions, and interventions that targeted the patients themselves, as well as their caregivers and their peers.6 These interventions help to empower the patients and bring a sense of positivity in the patient community. Interventions that involve policy, awareness, and academics all contribute to creating a safe space for patients with epilepsy so they can avoid not feeling judged or isolated.

Interventions that target the patients themselves are another type of method to reduce stigma, such as physical approaches like exercise regimens. One exercise approach used among these patients is yoga, which requires mindfulness of the body and brain while doing stretching positions. Recent research shows that this type of exercise can alleviate the burden of epilepsy and improve the overall quality of life in patients by reducing perceived stigma.7 The exercise can be done anywhere, as well, whether it is performed remotely from watching a stream of a yoga class or going to one in person. There are also benefits to doing these types of exercises in a community setting to feel not only more connected to oneself but also to the other people.8 Although there are different types of interventions to address stigma in epilepsy, the effectiveness for reducing it depends on the individual person and thus should be a targeted, personalized intervention.

“Stigma must be specifically addressed with each person.It can be a true barrier to appropriate care. Our support groups really help with stigma as the peer-to-peer connection can make people feel less alone. Epilepsy is particularly susceptible to stigma as a seizure is a profound loss of control and a big seizure can look terrifying, which historically has been thought of as a spiritual illness (possession by the devil). Constant raising of awareness of epilepsy as a medical condition, education of the patient and their families and willingness to talk to other people that are important to the patient helps with stigma. Facing the truth, naming it, and helping with fear improves care because it allows patients to really discuss their concerns and dig into treatment, “ Lara V. Marcuse, MD, and Madeline Fields, MD, both codirectors of the Mount Sinai Epilepsy Program, The Icahn School of Medicine at Mount Sinai, told NeurologyLive.

Community holds an important role for patients who are living with a difficult neurological condition such as epilepsy because of the socialization and understanding that can be built in those settings. There are several patient advocacy organizations that share resources for those looking to relate to other people and learn more on how they can personally manage their condition, besides simply having a conversation about it with their provider. Many of these patient foundations have conducted research, awarded grants, and have supplied patients with the information they may need to seek better care for themselves.

These organizations also promote awareness for the condition, especially by holding awareness events during the year or at medical conferences by helping to share new updates on potential therapies. They also help patients to get connected to support group programs which can be successfully implemented in the community and are associated with improved outcomes in adults with epilepsy—particularly those with mental health conditions.9 In other research, findings showed that group participation in general demonstrated significant benefit among adults with long-term disease in aspects of pain, psychological outcomes, self-efficacy, self-care, and quality of life.10 The epilepsy community that is put together by not only the organizers but other stakeholders has helped patients in being more empowered to manage their condition through awareness brought by education to reduce stigma.

“I think a lot of it is education. It’s education for providers to talk about these new opportunities and it’s also education for patients and caregivers to learn about these new opportunities to not give up and strive for better seizure control,” Danielle Becker, MD, MS, FAES, division director of epilepsy and associate professor of neurology at The Ohio State University Wexner Medical Center, told NeurologyLive. “The goal would be to strive for zero seizures, if possible, and for providers and patients as well as caregivers to learn that there are new opportunities coming out there. Even if opportunities may not have worked in the past, newer developments may work. As far as stigma, I really think it’s about education, about how to improve quality of life, reduce drug load, and reduce cognition. How to normalize the lives of patients potentially with epilepsy, but also try to give back some of that independence that’s been taken away.”

Addressing Stigma With In-Clinic Communication

In the clinical setting, clinicians can help by emphasizing the importance of the preferred style of communication with patients, making sure that they feel more in control of the decisions that they want to make moving forward with their treatment. In addition, having effective communication between both the provider and patient is recognized as of the utmost importance to improve the quality of care for the patients with epilepsy.10 In performing this communication, physicians can increase their patients’ knowledge and perceptions about epilepsy—but it will require a significant increase in ongoing efforts for educational programs to eliminate stigma and improve access to care.11

In a qualitative study published in BMC Neurology, lead author Jerry Paul K. Ninnoni , PhD, the head of department of mental health at the University of Cape Coast School of Nursing and Midwifery in Cape Coast, Ghana, observed that patients who have learning disabilities and live with epilepsy (as well as their caregivers) would like to be more informed about their disease to be more involved in decision making and management of the condition.12 Another form of effective communication is motivational interviewing, which is a method of motivating patients to engage in a behavior modification process to have an empowering conversations with patients.13 Experts in epilepsy have highlighted that patients still face a lot of unmet needs in terms of treatment and diagnosis, but there is also the unmet need of reducing self-felt stigma. Therefore, a shift in communication methods in the clinic could help these patients feel more empowered to not only control their seizures, but also live their lives with confidence.

“Epilepsy still does carry stigma with it, [but] maybe less so in the US and Europe than in other parts of the world. In India, it’s still a reason to abandon marriage—if either party has epilepsy—and so it is in many parts of the world. So being aware of it as a disease; that is, a disease in the same way as diabetes [is], but in a way with a greater emotional impact because of the tremendous insecurity that you have as a patient,” Pavel Klein, MD, director of the Mid-Atlantic Epilepsy & Sleep Center and adjunct associate professor of neurology at George Washington University, told NeurologyLive.

“For instance,” Klein said, “knowing that at any point you could lose consciousness, fall to the ground, look unpleasant with writhing and foaming at the mouth, or even urinating on yourself in a store while shopping. All these things that can happen, and you don’t know when they could happen. We can live in fear of it all the time. Having other people, family, friends, schools, employment, being aware of that and being supportive is very important.”

Moving Ahead

Looking to the future, these aforementioned strategies are effective ways to reduce stigma among patients with epilepsy. This includes the administration of effective therapies or nonpharmalogical treatments to help improve mood. There is also the involvement of patient advocacy organizations that help to connect patients with others who may be experiencing similar medical issues with their condition and offer them resources for their care journey. In addition to patients speaking with others with epilepsy, there is also a need for effective communication between the clinicians. Having a clear line of communication, and using tactics like motivational interviewing, can help the patient recognize that they have the power to manage their seizures and live a higher quality of life. All of these aspects for reducing stigma are underscored by clinicians in the field of epilepsy and are strongly recommended for new year and beyond—particularly in a world where treatments can dramatically alter the lives of patients, even those with refractory epilepsy.

“It’s remarkable how in this day of instant communication across the globe, there is still a lack of awareness of new treatments both among healthcare professionals and patients. It is relevant for general practitioners to be aware of these new treatment options that really can put stay to the disease. Many physicians think that if you have 1 seizure a month, it’s not a big deal. They may consider that the patient is controlled enough, but it is a big deal,” Klein said.

Klein advocated for his peers to pursue seizure-free treatment outcomes for any eligible patients—a realistic and life-changing opportunity in 2023 and beyond.

“I also think it is a very important goal to strive for in terms of educating society, and then the same goes at the other end of the spectrum,” he added. “I think patients should be aware that there are options—and if they’re not being treated with those, with all the options that are out there, it’s not right. General awareness of both epilepsy to reduce the stigma, but also of change in the treatment options, such that previously resistant refractory epilepsy that could now potentially be successfully treated, is important.”



  1. Fisher RS, Acevedo C, Arzimanoglou A, et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014;55(4):475-482. doi:10.1111/epi.12550
  2. National Clinical Guideline Centre (UK). The Epilepsies: The Diagnosis and Management of the Epilepsies in Adults and Children in Primary and Secondary Care. London: Royal College of Physicians (UK); January 2012.
  3. Mao L, Wang K, Zhang Q, et al. Felt Stigma and Its Underlying Contributors in Epilepsy Patients. Front Public Health. 2022;10:879895. Published 2022 Apr 26. doi:10.3389/fpubh.2022.879895
  4. Henning O, Buer C, Nakken KO, Lossius MI. People with epilepsy still feel stigmatized. Acta Neurol Scand. 2021;144(3):312-316. doi:10.1111/ane.13449
  5. Krumholz A. Driving issues in epilepsy: past, present, and future. Epilepsy Curr. 2009 Mar-Apr;9(2):31-5. doi: 10.1111/j.1535-7511.2008.01283.x. PMID: 19421374; PMCID: PMC2673400.
  6. Chakraborty P, Sanchez NA, Kaddumukasa M, et al. Stigma reduction interventions for epilepsy: A systematized literature review. Epilepsy Behav. 2021;114(Pt B):107381. doi:10.1016/j.yebeh.2020.107381
  7. Kaur K, Sharma G, Dwivedi R, et al. Effectiveness of Yoga Intervention in Reducing Felt Stigma in Adults With Epilepsy: A Randomized Controlled Trial. Neurology. 2023;101(23):e2388-e2400. Published 2023 Dec 4. doi:10.1212/WNL.0000000000207944
  8. Kanamori S, Takamiya T, Inoue S, Kai Y, Kawachi I, Kondo K. Exercising alone versus with others and associations with subjective health status in older Japanese: The JAGES Cohort Study. Sci Rep. 2016 Dec 15;6:39151. doi: 10.1038/srep39151. PMID: 27974855; PMCID: PMC5156899.
  9. Sajatovic M, Needham K, Colón-Zimmermann K, Richter N, Liu H, Garrity J, Ryan ER, Storer N, Harper V. The Community-targeted Self-management of Epilepsy and Mental Illness (C-TIME) initiative: A research, community, and healthcare administration partnership to reduce epilepsy burden. Epilepsy Behav. 2018 Dec;89:175-180. doi: 10.1016/j.yebeh.2018.10.004. Epub 2018 Oct 29. PMID: 30385215; PMCID: PMC7484726.
  10. Stern JM, Cendes F, Gilliam F, Kwan P, Ryvlin P, Sirven J, Smith B, Adomas A, Walter L. Neurologist-patient communication about epilepsy in the United States, Spain, and Germany. Neurol Clin Pract. 2018 Apr;8(2):93-101. doi: 10.1212/CPJ.0000000000000442. PMID: 29708182; PMCID: PMC5914745.
  11. Schachter SC. Successful health communication in epileptology. Seizure. 2017;44:7-10. doi:10.1016/j.seizure.2016.10.005
  12. Ninnoni JPK. A qualitative study of the communication and information needs of people with learning disabilities and epilepsy with physicians, nurses and carers. BMC Neurol. 2019;19(1):12. Published 2019 Jan 19. doi:10.1186/s12883-018-1235-9
  13. Hosseini N, Mokhtari S, Momeni E, Vossoughi M, Barekatian M. Effect of motivational interviewing on quality of life in patients with epilepsy. Epilepsy Behav. 2016;55:70-74. doi:10.1016/j.yebeh.2015.10.012
Church leader describes epilepsy as ‘spiritual problem’

Church leader describes epilepsy as ‘spiritual problem’

A leader of a church in the UK has described epilepsy as a “spiritual problem”, an investigation by BBC Panorama has claimed.

While being filmed undercover by Panorama, Bishop James Marques said: “We know that epilepsy is a medical condition but in the Bible the Lord Jesus casts out an evil spirit that was causing epilepsy. So we can understand that epilepsy in reality is a spiritual problem that has a physical, visible manifestation. But it’s a spiritual problem.”

The preacher is part of the Universal Church of the Kingdom of God (UCKG).

UCKG is an international Evangelical Christian denomination with headquarters in Brazil.

The Panorama investigation visited a UCKG youth group service in Brixton, south London, and a service in Croydon, south London.

The church has more than 30 branches in the UK.

According to the Panorama programme, the church leaders believe mental health problems and other conditions can be caused by demons. The leaders would then pray ‘strong prayers’ for people with depression and other illnesses.

In a statement to the BBC, UCKG said “strong prayers” are never “promoted as a replacement for medical or… professional help”.

In response to Bishop Marques comments about epilepsy, Dr Joe Aldred, a Pentecostal bishop – not affiliated with UCKG – said: “For a minister today to insist that something like epilepsy is demonic as a matter of course is exceedingly misleading, inappropriate and not a message for the times in which we live.”

Responding to a post about the programme on Twitter, one user said they had experienced something similar to “cure” their epilepsy.

“I experienced this in the 1980s. I’ve had holy water sprinkled on me, as part of casting out the evil spirit that lurked within. 10 years ago, I was advised that a pastor could cure me. It’s sad that such backward thinking still exists in our society.”

Another user said: “The uprising of ignorance and denial of science by many religions and politicians is not helpful to our society.”


Epilepsy Action deputy chief executive Rebekah Smith said: “We’re appalled by the practices at the Universal Church of the Kingdom of God uncovered by last night’s BBC Panorama report, particularly concerning people with epilepsy.

“The use of so-called ‘strong prayers’ as a treatment for epilepsy, which UCKG misleadingly labels as a ‘spiritual problem’, is not just scientifically baseless but also potentially harmful.

“This investigation is a stark reminder of why there’s an urgent need for greater education, understanding and advocacy concerning epilepsy. Portraying epilepsy as a condition that requires spiritual intervention is a dangerous representation, akin to conversion therapy tactics, which can have devastating psychological and physical effects. Epilepsy is a neurological condition and it should be treated by medical professionals.

“Furthermore, this report highlights a wider issue: the pervasive stigma and misunderstanding surrounding epilepsy in our society.

“People with epilepsy tell us they feel isolated, stigmatised and discriminated against. In the workplace alone, they feel their condition hinders their career advancement, and more than a third have heard colleagues make derogatory comments about their seizures.

“At Epilepsy Action, we believe in a society where every individual is treated with dignity, respect and understanding, regardless of their condition. We want to create a world without limits for people with epilepsy, and this starts by challenging the misconceptions that are still so prevalent in our society.”



Research uncovers potential treatment target for rare, genetic type of epilepsy

Research uncovers potential treatment target for rare, genetic type of epilepsy

Researchers at the Francis Crick Institute, UCL and MSD have identified a potential treatment target for a genetic type of epilepsy.

Developmental and epileptic encephalopathies are rare types of epilepsy which start in early childhood. One of the most common types of genetic epilepsy, CDKL5 deficiency disorder (CDD), causes seizures and impaired development. Children are currently treated with generic antiepileptic drugs, as there aren’t yet any disease-targeting medications for this disorder.

CDD involves losing the function of a gene producing the CDKL5 enzyme, which phosphorylates proteins, meaning it adds an extra phosphate molecule to alter their function. Until now, researchers have not been sure how genetic mutations in CDKL5 cause CDD.

Through their research, published today in Nature Communications, the researchers examined mice which lacked the Cdkl5 gene, and used a technique called phosphoproteomics to scan for proteins which are a target for the CDKL5 enzyme.

They identified a calcium channel, Cav2.3, as a target. Cav2.3 allows calcium to enter nerve cells, exciting the cell and allowing it to pass on electrical signals. This is needed for the nervous system to function properly, but too much calcium coming into cells can result in overexcitability and seizures.

The researchers then recorded from the calcium channels to see what was happening when they were not being phosphorylated by CDKL5. The channels were able to open, but were taking a lot longer to close, leading to larger and more prolonged currents flowing through them. This implies that CDKL5 is needed to limit calcium entry into cells.

The researchers also used nerve cells derived from stem cells taken from people with CDD, again observing that phosphorylation of Cav2.3 was reduced. This suggests that Cav2.3 function is potentially altered in humans as well as mice.

Mutations in Cav2.3 that enhance channel activity are already known to cause severe early onset epilepsy in a related condition called DEE69, which shares a lot of the same symptoms of CDD. These results suggest that Cav2.3 overactivity is a common feature of both disorders, and that inhibiting Cav2.3 could help with symptoms like seizures.

“At the moment, there’s a clear need for drugs which specifically target the biological nature of CDD. We’ve made a molecular link between CDKL5 and Cav2.3, mutations in which produce similar disorders. Inhibiting Cav2.3 could be a route for trials of future targeted treatments.”

Sila Ultanir, Senior Group Leader of the Kinases and Brain Development Laboratory at the Crick

Marisol Sampedro-Castañeda, postdoctoral researcher at the Crick, and first author, said: “Our research highlights for the first time a CDKL5 target with a link to neuronal excitability. There’s scattered evidence that this calcium channel could be involved in other types of epilepsy too, so we believe that Cav2.3 inhibitors could eventually be tested more widely.

“Our findings have implications for a large group of people, from the families affected by these conditions to researchers working in the rare epilepsy field.”

This research was funded by MSD and the Loulou Foundation, a private foundation dedicated to the development of therapeutics and eventual cures for CDD.

Jill Richardson, Executive Director and Head of Neuroscience Biology at MSD, said: “MSD is proud of this innovative research resulting from a collaboration with researchers at the Crick and UCL. We have collectively furthered our scientific understanding of the biological targets associated with the aetiologies of Developmental Epileptic Encephalopathies – an understanding we hope will contribute toward scientific progress in this important area of high, unmet medical need.”

The researchers are now working with Lario Therapeutics, a recently launched biotech company which is seeking to develop first-in-class CaV2.3 inhibitors as precision medicines to treat CDD and related neurodevelopmental syndromes.



Journal reference:

Sampedro-Castañeda, M., et al. (2023). Epilepsy-linked kinase CDKL5 phosphorylates voltage-gated calcium channel Cav2.3, altering inactivation kinetics and neuronal excitability. Nature

Teens With Epilepsy Face Higher Odds for Eating Disorders

Teens With Epilepsy Face Higher Odds for Eating Disorders

By Dennis Thompson HealthDay Reporter

Key Takeaways

  • Teens with epilepsy are more likely to have an eating disorder than other kids, a new survey finds
  • About 8.4% of teens treated for epilepsy had an eating disorder, compared to the national average of 2.7%
  • Anorexia was more common than bulimia or binge eating among epileptic teens


MONDAY, Dec. 4, 2023 (HealthDay News) — Teenagers with epilepsy are more likely to have an eating disorder than those not suffering from the brain disease, a new study shows.

About 8.4% of children ages 10 to 19 treated at a Boston epilepsy clinic had eating disorders, three times the national average of 2.7% of teens with an eating disorder, researchers found.

Teens With Epilepsy Face Higher Odds for Eating Disorders

“Adolescents with epilepsy may feel a loss of control because they don’t know when they’ll have a seizure,” said lead researcher Dr. Itay Tokatly Latzer, an epilepsy fellow at Boston Children’s Hospital.

“Controlling what they eat or don’t eat can presumably make them feel they have regained some control,” Tokatly Latzer added in a hospital news release. “This is one of the ways epilepsy may lead to eating disorders, in people who have a biological or psychological predisposition to develop eating disorders.”

For the study, Tokatly Latzer and colleagues analyzed data on 1,740 teens treated at least once at Boston Children’s Epilepsy Center for any conditions involving seizures between 2013 and 2022. None of the teens had an intellectual disability or autism.

Of those children, 146 were diagnosed with an eating disorder.

During the 10-year-period, the number of teens treated at the center who had eating disorders increased annually, rising from 12 in 2013 to 22 in 2022.

Anorexia was more common than either bulimia or binge eating among teens with epilepsy and an eating disorder.

Researchers found that teens with epilepsy were more likely to have an eating disorder if they had a lower BMI or suffered from a particular type of seizure called psychogenic non-epileptic seizures.

They also were more likely to have depression, anxiety, suicidal thoughts or a history of sexual abuse.

Adolescents with eating disorders began suffering seizures at a younger age than those without an eating disorder, results show.

The findings were presented Friday at the American Epilepsy Society’s annual meeting in Orlando, Fla. Results presented at medical meetings should be considered preliminary until they’re published in a peer-reviewed journal.

Health professionals at epilepsy clinics need to be aware of the higher risk of eating disorders in the adolescents they treat, Tokatly Latzer said. He added that those who have eating disorders should be referred for treatment of the disorder.


“This research is especially important because it highlights a psychiatric condition that may be associated with adolescents with epilepsy and can lead to a failure to meet nutritional needs and severe inability to carry out many daily life functions,” Tokatly Latzer added.


More information

SOURCE: American Epilepsy Society, news release, Dec. 1, 2023

FDA Warns of Potentially Lethal Reaction to Seizure Meds

FDA Warns of Potentially Lethal Reaction to Seizure Meds

Megan Brooks
November 28, 2023

The antiseizure drugs levetiracetam (Keppra, Keppra XR, Elepsia XR, Spritam, generic) and clobazam (Onfi, Sympazan, generic) can cause a rare but serious drug hypersensitivity reaction that can be life threatening if not detected and treated promptly, the US Food and Drug Administration (FDA) warns in an alert issued today.

Known as drug reaction with eosinophilia and systemic symptoms (DRESS), it may start as a rash but can quickly progress and cause injury to internal organs, the need for hospitalization, and death, the FDA notes.

A search of the FDA Adverse Event Reporting System (FAERS) and the medical literature through March 2023 identified 32 serious cases of DRESS worldwide that were associated with levetiracetam.

Three cases occurred in the US, and 29 occurred abroad. In all 32 cases, the patients were hospitalized and received medical treatment; in two cases, the patients died.

The median time to onset of DRESS in the levetiracetam cases was 24 days; times ranged from 7 to 170 days. The reported signs and symptoms included skin rash (n = 22), fever (n = 20), eosinophilia (n = 17), lymph node swelling (n = 9), and atypical lymphocytes (n = 4).

Twenty-two levetiracetam-associated cases of DRESS involved injury to one or more organs, including the liver, lungs, kidneys, and gallbladder.

In 25 of the 29 cases for which information on treatment discontinuation was available, DRESS symptoms resolved when levetiracetam was discontinued.

As for clobazam, a search of FAERS and the medical literature through July 2023 identified 10 serious cases of DRESS worldwide ― one in the US, and nine abroad. All 10 patients were hospitalized and received medical treatment. No deaths were reported.

The median time to onset of clobazam-associated DRESS was 21.5 days (range, 7 to 103 days). The reported signs and symptoms included skin rash (n = 10), fever (n = 8), eosinophilia (n = 7), facial swelling (n = 7), leukocytosis (n = 4), lymph node swelling (n = 4), and leukopenia/thrombocytopenia (n = 1).

In nine cases, there was injury to one or more organs, including the liver, kidneys, and gastrointestinal tract.

DRESS symptoms resolved in all 10 cases when treatment with clobazam was stopped. DRESS and other serious skin reactions reported with clobazam, a benzodiazepine, have not generally been associated with other benzodiazepines, the FDA notes.

Label Updates

As a result of these cases, warnings about the risk of DRESS will be added to the prescribing information and patient medication guides for these medicines, the FDA announced.

“Health care professionals should be aware that prompt recognition and early treatment is important for improving DRESS outcomes and decreasing mortality,” the FDA said.

They note that diagnosis is often difficult because early signs and symptoms, such as fever and swollen lymph nodes, may be present without evidence of a rash.

DRESS may develop 2 to 8 weeks after starting levetiracetam or clobazam. Symptoms and intensity can vary widely.

DRESS can also be confused with other serious skin reactions, such as Stevens-Johnson syndrome and toxic epidermal necrolysis.

The FDA says patients should be advised of the signs and symptoms of DRESS and be told to stop taking the medicine and seek immediate medical attention if DRESS is suspected during treatment with levetiracetam or clobazam.

Adverse reactions with these medications should be reported to the FDA’s MedWatch program.


Source: FDA Warns of Potentially Lethal Reaction to Seizure Meds – Medscape – Nov 28, 2023.

New 7 Tesla Treats Epilepsy

New 7 Tesla Treats Epilepsy

CLEVELAND, Ohio (Ivanhoe Newswire) – Almost three and a half million people suffer from epilepsy – a disorder of the brain that can cause seizures. For some, these seizures can be controlled with medication, others will need brain surgery, which can be risky. But now, new technology is helping doctors pinpoint what’s causing the seizures better than ever before.

Video Here

Gabriela “Gabi” Sable first started experiencing signs of epilepsy when she was just 11 – not long after, seizures started.

“People’s parents actually went to the school and told the school that they didn’t want me to hang out with their kids,” Gabi tells Ivanhoe.

Multiple hospitalizations and MRIs could not pinpoint what was causing the seizure.

Pediatric epileptologist at the Cleveland Clinic Epilepsy Center, Elia Pestan Knight, MD, says, “Some patients have very small malformations that we cannot see.”

Dr. Pestana Knight knew Gabi’s lesion was in her frontal lobe, but it was too tiny to know exactly where.

“We can, simply, not remove the whole frontal lobe. Those are her dominant lobes for her language and for her ability to write and comprehend the spoken language,” Dr. Pestana Knight explains.

The most common MRI used for diagnosis is something called the 3 Tesla – that’s the size of the magnet. But now, there’s a more powerful 7 Tesla MRI, which was able to determine exactly where Gabi’s lesion was.

Dr. Pestana Knight adds, “That lesion was far away from the areas of her speech.”

Dr. Pestana Knight was able to perform a robotic laser ablation therapy to remove the lesion, and now, Gabi is seizure-free and doing all the things she was never able to do before, including hiking Peru’s Machu Picchu.

Gabi was part of a clinical trial on the 7 Tesla MRI. It has now been approved by the FDA and is expected to help hundreds of thousands of people suffering with hard to detect lesions that cause epilepsy.



Published: Dec. 5, 2023 at 4:12 PM EST
Greater preparation, increased communication needed in post-pandemic epilepsy care

Greater preparation, increased communication needed in post-pandemic epilepsy care

Key takeaways:

  • Health care professionals should be prepared for the next pandemic armed with lessons from COVID-19, a speaker said.
  • Work policy in the post-pandemic era must be clear, transparent, fair and overtly communicated.


ORLANDO — In Health care, and epilepsy care specifically, greater preparation, communication and innovation are required to maintain a standard of care when the next major crisis after the COVID-19 pandemic arises, according to a presenter.

“In a crisis, you need to overcommunicate,” Jonathan C. Edwards, MD, MBA, professor and chair of neurology at the Medical University of South Carolina, told attendees at the American Epilepsy Society annual meeting. “(Ask yourself) what did you do in terms of operational readiness that kept your program going and maintained access of care for your patients?”

Free A Doctor Talking the Patient Stock Photo

Although the thick of the COVID-19 pandemic has passed, health care professionals should be prepared for the next pandemic armed with the lessons learned from what just passed, then the next one after that, and anything else that happens in between that may disrupt the continuity of care, Edwards continued.

Planning for such requires a comprehensive debriefing session among all personnel to review protocols and operational readiness, as well as brainstorming sessions to discuss and implement solutions which ease the process. Edwards recalled an example during the early stages of COVID-19 at MUSC, where a colleague clamped an iPad to an IV pole with extension cords that allowed for overnight charging and whole-day usage. This allowed for quick record searches and note-taking for patients.

The pandemic also presented a new paradigm with the rise of telemedicine across all disciplines and specialties. Edwards cited a 2022 study by the CDC that found more than 90,000 telemedicine participants in the United States. Additionally, a rise in telemedicine utilization among patients aged 45 years and older necessitated alterations in caregiving philosophy.

At MUSC, Edwards revealed 90% of outpatient visits were by telemedicine at the height of the pandemic, and, over the last 18 months, 15% of outpatient neurology visits were performed over the phone. Epilepsy, he reasoned, is well-suited for telemedicine, as examinations are stable, EEGs, MRIs and labs can be reviewed remotely and those who do not live within a reasonable distance from level 1 or 2 trauma centers can be treated closer to home with information accessed remotely.

Health care professionals themselves have adapted to the new circumstances, and a large portion of the overcommunication needed to address workflow arises due to staff possessing a clear understanding of when, how and where they can work remotely. Work policies, for epilepsy as a specialty or medicine as a whole, must take into consideration exclusivity, privacy and technical concerns, he said.

“You need to have a clear, transparent and fair remote work policy which spells out in advance what is remote work, what is sick leave and what is personal time,” Edwards said. “You need to emphasize quality, timeliness and responsiveness. You should create more opportunities to engage with your team.”


Source:, Edwards JC. Epilepsy care in the post-pandemic era. Presented at: American Epilepsy Society annual meeting; Dec. 1-5, 2023; Orlando.

Idiopathic generalized epilepsy: An easy-to-understand introduction

Idiopathic generalized epilepsy: An easy-to-understand introduction

What is idiopathic generalized epilepsy?

Idiopathic generalized epilepsy affects about one third of people who have epilepsy. To understand what idiopathic generalized epilepsy is, it’s helpful to break the name down into its individual parts:

  • Idiopathic: This means an illness that comes ‘from oneself’. In terms of epilepsy, it means that the person was either born with epilepsy or it developed without any other known cause.
  • Generalized: This means that when the person has seizures, electrical discharges happen all over the brain at the same time – rather than just on one side or one specific place.
  • Epilepsy: This is a condition that causes people to have seizures. A seizure is when electrical discharges happen in the brain.

Other types of epilepsy might be caused by some kind of external factor or disease:

  • A lesion or a tumor on the brain that can be ‘seen’ on an MRI machine
  • Receiving a head injury
  • Having a stroke
  • Dementia or Parkinson’s disease
  • Having a fever or infection

But in idiopathic generalized epilepsy, the cause of the seizures is either unknown, or comes from the person’s genes (these are like instructions in our DNA that ‘tell’ our body how to grow). Also, the brains of people with idiopathic generalized epilepsy look and behave normally when they are not having seizures.

So is it genetic?

Possibly. There are several different kinds of idiopathic generalized epilepsy, and we know that some of them are definitely caused by peoples genes. However, in other cases there doesn’t seem to be a specific genetic cause so we’re still not sure why they happen.

Types of idiopathic generalized epilepsy

There are several subgroups of idiopathic generalized epilepsy (known as ‘syndromes’), and they include:

Each of the syndromes has slightly different seizures associated with it. That said, it is common for people with idiopathic generalized epilepsies to have absence seizures (where you lose consciousness), myoclonic seizures (where you have uncontrollable jerks) and tonic-clonic seizures (where you drop to the floor and shake uncontrollably).

Some kinds of idiopathic generalized epilepsies are lifelong. However, some childhood epilepsies gradually stop on their own as people get older.

Learn more: Difference between generalized and focal epilepsy

Diagnosis and treatment of idiopathic generalized epilepsy

If you have begun having seizures, your doctor will begin by taking a case history to learn more about when they started and what happens. They may then use an EEG and an MRI machine to try and work out what is going on inside your brain.

Treatment for idiopathic generalized epilepsy varies depending on the syndrome you have. However, in most cases antiepileptic drugs are the first treatment doctors will use.

People with epilepsy: Meet Cody, who has generalized tonic-clonic seizures

Your relationship with your doctor

Names like idiopathic generalized epilepsy are very useful for doctors because they help them quickly categorize illnesses. However, these terms can be confusing for people who aren’t medically trained – so if you ever have any doubts about what your doctor is saying, ask them to rephrase it in a way that you understand.

This can help you to get more out of appointments with your epilepsy treatment team.



New author working to end stigma surrounding epilepsy

New author working to end stigma surrounding epilepsy

Sara Staggs is in Cleveland this weekend, participating in Cleveland Clinic’s Lifestyle Intervention For Epilepsy symposium

“I’m doing so much better. The brain surgery that I had at the Cleveland Clinic was a laser ablation,” Staggs said. “It’s a relatively new surgery where they can just, instead of opening up your skull, taking out a larger part of your brain, they can find where the pacemaker is, and then they just take a laser, and they can just ablate that really small part. So, it has a lot of benefits in that it leaves cognitive function intact. It’s quite, quite high tech.”

Sunday, Staggs was in Cleveland, participating in Cleveland Clinic’s Lifestyle Intervention For Epilepsy Symposium.

Staggs said, “About 3.4 million people in the US have epilepsy. It’s the fourth most common neurological condition in the U.S. One in 26 people in their lifetime will develop it. It’s very, very common, and people don’t talk about it a lot because I think there’s still a big stigma around it that we’re working on.”


November is Epilepsy Awareness Month! Here’s how you can get involved

November is Epilepsy Awareness Month! Here’s how you can get involved

November is here, and it’s not just a month for autumn leaves and Thanksgiving, it’s also a time to raise awareness about epilepsy. Epilepsy Awareness Month is dedicated to dispelling myths, fostering understanding, and supporting those living with this neurological disorder.

It is a chronic condition characterised by recurrent seizures, which are sudden, uncontrolled electrical disturbances in the brain. It can affect people of all ages, genders, and backgrounds. According to the World Health Organization, around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.

The primary goal of Epilepsy Awareness Month is to break down the stigma and misconceptions surrounding the condition. Here are some key aspects of this awareness campaign:


Understanding Epilepsy

One of the first steps in raising awareness is educating the public about epilepsy. Many people are unfamiliar with the condition and its impact on individuals and their families. Epilepsy Awareness Month provides an opportunity to share information and resources, increasing knowledge and empathy.

Epilepsy is often shrouded in stigma, with myths and misunderstandings that can lead to discrimination and isolation for those living with the condition. This awareness month aims to challenge these stigmas and promote a more inclusive and supportive society.


Significance of Epilepsy Awareness Month

Individuals living with epilepsy, as well as their families and caregivers, need support. Epilepsy Awareness Month provides a platform for organisations, advocacy groups, and healthcare professionals to offer guidance, resources, and community to those who need it.

Many individuals living with epilepsy share their personal stories during this month, helping to put a human face on the condition. These stories inspire hope, reduce feelings of isolation, and encourage others to share their experiences.


Purple Power

Purple is the designated colour for epilepsy awareness, and you’ll likely see plenty of purple during this month. Wearing purple, changing your social media profile picture, or illuminating buildings in purple are all ways to show support.


Source:  Kirtika Katira,

What if seizures could be predicted?

What if seizures could be predicted?

New research would provide a measure of safety and security for those with epilepsy – and give parents of young children peace of mind.


It happened without warning.

Vanessa Vazquez’s son, Max Lucca, was at the kitchen table doing homework after school. He stood up to sharpen a pencil. Then, suddenly he began shaking uncontrollably. Inside his brain, a storm of electrical activity was raging, messages firing in a frenzy and overloading normal function.

The 14-year-old was having his first epileptic seizure. It would not be his last.

Epilepsy is a chronic, lifelong condition without a cure. For Vazquez, it’s a shadow of unbearable unknowing that falls over every moment. When will her son have a seizure? Will she be there to make sure he’s safe? Unlike other kids his age, Max Lucca’s life is marked by limitations. No bicycle rides on his own. No swimming on his own. The fact a seizure could strike at any time makes too many activities dangerous.

But if the next one could be predicted, parents like Vazquez would have time to prepare and kids like Max Lucca could just be kids.

Taking the unpredictability out of seizures is the goal of FIU data scientist and associate professor in the Knight Foundation School of Computing and Information Sciences Fahad Saeed’s research.

With the help of artificial intelligence (AI), he’s creating advanced machine learning models capable of doing what no human can — parse through electroencephalography (EEG) data to track unusual electrical activity that spark seizures. His technology will be incorporated into wearable sensors that feed information to a smartphone. Any detected irregularities in brain waves would signal trouble, prompting an early alert notification.

“Right now, there’s no other solution or technology that can predict seizures. They can only be detected while they’re happening,” Saeed said. “An early alert would give people precious time to prepare and take safety precautions. For parents like Vanessa, it would give them peace of mind to at least put their kids to bed at night.”

Being terrified of putting a child to sleep at night something Saeed heard over and over when he spoke to parents of children with epilepsy. Even at the very start of his NSF-funded research, he knew he needed to hear from the people who’d benefit most from his results. So, he connected with dozens of families.

Vanessa Vazquez shared Max Lucca’s story with Saeed. How at two-weeks old he was diagnosed with tuberous sclerosis complex (TSC), a rare disorder that causes benign tumors to grow in the brain and other organs — and put him at increased risk of epilepsy. How after his first seizure he was prescribed one seizure medication after another. Each option caused horrible side effects, seeming to do more harm than good, finally forcing Vazquez to make the difficult decision to take her son off the medications and instead live with the anxiety of uncertainty.

As the father of two children, Saeed says every story he heard broke his heart. The fear and pain of having to witness your child having a seizure, sometimes multiple times a day, were unfathomable to Saeed.

These difficult conversations became his guidance, though. Saeed says they’ve made his research better, taking it in a more impactful direction.

“Impact is what I’m after and to conduct research that can be translated from lab to real life,” Saeed said. “The conversation with the parents helped me really refine what this technology will actually look like in the real world.”

Before his AI-based model can be incorporated into a wearable EEG device, Saeed remains focused on perfecting the science behind the technology. His algorithm currently predicts with 90% accuracy when a seizure might happen, but next he has to train and test how it handles simulated EEG in real time before it can be studied on people. To prepare for those human trials, Saeed is connecting with organizations like Epilepsy Foundation Florida and TSC Alliance, to explore ways to collaborate and continue making sure the product fits real-world needs.

“Even if I have the best research and the best intentions, there’s no way I can make an impact by myself,” Saeed said. “It’s only with the help of the community, especially parents of kids who live with epilepsy, that we can accomplish something life-changing.”

Life-changing is exactly how Vazquez describes Saeed’s research. The list of what Max Lucca cannot do would change to what he can do. He’d finally get to ride a bike down the street with friends — without his parents being around.

“Dr. Saeed’s research would let kids be kids, and enjoy the things other kids can do without thinking — normal everyday things like ride a bike or go to friends’ houses to play,” Vazquez said. “That would change everything for families like mine.”


Source:,  Angela Nicoletti

Common myths about epilepsy and kids

Common myths about epilepsy and kids

Epilepsy is one of the more common neurologic disorders in children. About 1 in 26 people have epilepsy, and 1 in 10 people will have at least one seizure in their lifetime.


Dr. Anthony Fine, a  and epileptologist at Mayo Clinic, says even though it’s fairly common in , there are a few misconceptions when it comes to  and kids.

Epilepsy can be a challenge to diagnose in children because not all seizures are the same.

“It’s really a common misconception that all seizures are convulsive seizures,” says Dr. Fine.

There are other types of seizures, such as absent seizures, where a child may blank out for a few seconds or minutes, and then go back to activity.

“I’ve had some kids where I’ve seen where, you know, people think they’re acting goofy. And this kind of continues, and, eventually, it gets picked up that something is actually going on. And there are other seizures that look like night terrors almost,” says Dr. Fine.

He says, for many children, there are treatments to control seizures.

“It’s not a one-size-fits-all kind of deal with epilepsy. You really need to tailor it to the patient and their response. But, for the most part, antiseizure medications can be very helpful. And some children can control their seizures completely.”

Dr. Fine says a common misconception is that ADHD medications can cause seizures, and children who have epilepsy and ADHD should avoid them.

“It turns out that that’s not true. It’s really there’s just a  between epilepsy and ADHD. And, so, if you have one, you’re more likely to have the other.”


Source:, Jason Howland, Mayo Clinic News Network

Exposure to Anti-Seizure Medications Does Not Appear to Harm Neurologic Development in Young Children

Exposure to Anti-Seizure Medications Does Not Appear to Harm Neurologic Development in Young Children

Published: September 28, 2023

Most mothers who took prescription anti-seizure medications during pregnancy can breathe a sigh of relief: Young children who were exposed to commonly prescribed medications in utero do not have worse neurodevelopmental outcomes than those of healthy women (Lancet Neurol 2023;22[8]:712-722).

Commonly used anti-seizure medications, such as lamotrigine and levetiracetam, are generally considered effective and safe, especially compared with many first-generation epilepsy treatments that carry profound risks to unborn children. Although epilepsy may no longer be the reason that prevents someone from starting a family, there is still not enough information about how anti-seizure medications taken by the mother affect maternal and child outcomes after delivery.

The new study provides reassurance to patients and offers guidance to neurologists who are faced with a challenge of maintaining the fragile balance between prescribing drug dosages that suppress a mother’s seizures but carry no increased risks for neurologic complications for the baby.

Saying all anti-seizure medications “are bad is overly simplistic and doesn’t make sense biologically,” said senior author Page Pennell, MD, a professor and the chair of neurology at the University of Pittsburgh. “Being able to say that no, taking these medications will not put their future child at a greater risk of autism or learning disabilities, has a huge impact for women with epilepsy who are considering pregnancy.”

Epilepsy affects more than 1 million American women of childbearing age. With its sudden and debilitating seizures and limited number of medications, which caused significant risks to the developing fetus, the condition was considered incompatible with pregnancy for much of the 20th century, although that landscape is gradually changing.

The MONEAD (Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs) study was launched two decades ago with the goal of delivering high-quality information about how anti-seizure medications affect both the mother and child. The prospective observational study recruited women who were treated for epilepsy at 20 medical centers across the United States and followed them and their babies over the course of pregnancy and several years postpartum.

Previous data that has come out from the study highlighted the need to carefully monitor and adjust the dosage of anti-seizure medications to achieve adequate control of seizures without compromising the health of the fetus. The new study focused on determining whether exposure to these drugs causes long-term neurodevelopmental effects that negatively affect the child.

To assess the effects of fetal exposure to antiseizure medications, children at the age of 36 months were tested for their vocabulary and verbal comprehension skills as well as ability to describe simple pictures. Children of women who were treated with lamotrigine and levetiracetam were as good at verbally describing simple objects and pictures as those of women without epilepsy. Their ability to understand language was also comparable to children of the same age who were born to women without epilepsy, highlighting that both anti-seizure medications pose low risks for negatively affecting cognitive outcomes.

In a secondary analysis, researchers found that a high dosage of levetiracetam in the third trimester of pregnancy was correlated with adverse neurodevelopmental effects on the baby and recommend careful monitoring of blood levels of this drug and thoughtful dosing strategies. Researchers pointed out, however, that additional research is needed to determine whether the same holds true for other anti-seizure medications that are less common.

Screening for mood and anxiety disorders is another important factor that clinicians must consider. As part of the study, researchers observed that increased maternal anxiety and, to a lower degree, depression has negative effects on newborns.

“The findings provide valuable information for women with epilepsy, but there is still much to do as we don’t know the risks for most anti-seizure medications,” said lead author and one of several principal investigators of the study, Kimford Meador, MD, a professor of neurology at Stanford University, in California.

Adam Hartman, MD, a program director in the NINDS Division of Clinical Research and NINDS project scientist for MONEAD, applauded the researchers for shedding light on an important topic. “For many years, prescribers did not have good information on cognitive outcomes of children exposed in utero to more recently approved anti-seizure medicines,” he said. “This study represents another important step in advancing our knowledge; however, there is more confirmatory work to be done, particularly for the secondary outcomes.”

This research was supported by the National Institute of Neurological Disorders and Stroke and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Source: PPN News Staff,

Rapid Genome Sequencing Expedites Epilepsy, Seizure Diagnosis in Infants

Rapid Genome Sequencing Expedites Epilepsy, Seizure Diagnosis in Infants

Rapid genome sequencing (rGS) testing is feasible to facilitate early diagnosis among infants with new-onset epilepsy, according to a study.

The international, multicenter pilot cohort study is published in The Lancet Neurology.1

“The status quo has been to treat seizures like a symptom and try to find medications that alleviate them,” Annapurna Poduri, MD, MPH, director of the Neurogenetics and Epilepsy Genetics Programs at Boston Children’s Hospital, and study co-lead author, said in a statement.2 “But medications aren’t getting at the underlying causes of epilepsy. We all feel a deep sense of responsibility to bring our genetic discovery successes to our patients.”

Although genetic testing can help determine the cause of epilepsy, comprehensive testing is not standard of care, and can leave families and caregivers waiting for answers about their child’s health.

In this study, the researchers aimed to better understand the impact of broad genome sequencing among infants with unexplained seizures and their parents for infantile epilepsy.

The study screened 147 infants with new-onset epilepsy or complex febrile seizures from a pilot study of the International Precision Child Health Partnership (IPCHiP) in Australia, Canada, the United Kingdom, and the United States between September 1, 2021, and August 31, 2022.

After exclusion, the study enrolled 109 participants, in which 107 infants had rGS and 100 rGS results were analyzed.

Clinical data such as development study site, referral setting, sex, parent-reported race, gestational age, family medical history, epilepsy details, development before seizure onset, developmental plateau or regression following seizure onset, neurological and non-neurological features, MRI findings, previous and concurrent genetic testing, and if applicable, age at death were collected from medical records, treating clinicians, and parents.

Additionally, blood samples were collected and underwent genome-wide analysis for single nucleotide variants, small insertions and deletions, and the number of copy variants. Furthermore, infants with pathogenic or likely pathogenic variants in genes consistent with phenotypes and modes of inheritance were considered for rGS.

Across all children enrolled in the study, 43% (95% CI, 33%-25%) received a diagnosis within weeks (37 days; IQR, 25-50).

A genetic diagnosis was associated with neonatal seizure onset compared with infantile seizure onset (74% v 36%; P = .0027), referral setting for intensive care (71%), non-intensive care inpatient (44%), outpatient (28%; = .0178), and epilepsy syndrome (87% for self-limited epilepsies, 35% for developmental and epileptic encephalopathies, and 35% for other syndromes; = .001)

Additionally, rGS showed heterogeneity, with 34 unique genes or genomic regions implicated. Furthermore, diagnosis impacted prognosis in 39 of 43 (91%) of these cases, and guided treatment options for over half of infants.

The researchers acknowledged some limitations to the study, including unsureness in the detection of variants of uncertain significance that were not considered clinically diagnostic, in which the researchers believe further studies need to be done. Moreover, early genetic diagnosis and awareness of future prognosis may contribute to stress and anxiety among parents of infants with epilepsy.

Despite limitations, the researchers believe the study was able to demonstrate high feasibility, diagnostic yield, and short-term clinical effects of rGS in infants with epilepsy and anticipates long-term benefits for patients and families.

“It’s incredibly exciting to share the results from the first phase of this IPCHiP project and, importantly, it is fantastic that this research has provided powerful evidence for the clinical benefits of rapid genomic sequencing in infants with new-onset epilepsy,” Amy McTague, PhD, study co-lead, honorary consultant pediatric neurologist at Great Ormond Street Hospital and clinician scientist at the University College London Great Ormond Street Institute of Child Health, said in a statement.2 “Through global collaboration of expert researchers, we have shown how this testing can be used, across 4 different healthcare systems, to rapidly diagnose children with epilepsy, finding an answer for over 40% and guiding treatment in over 50% of these children.”


1. D’Gama AM, Mulhern S, Sheidley BR, et al. Evaluation of the feasibility, diagnostic yield, and clinical utility of rapid genome sequencing in infantile epilepsy (gene-steps): an international, multicentre, pilot cohort study. Lancet Neurol. 2023;22(9):812-825. doi:10.1016/s1474-4422(23)00246-6

2. Global genomic collaboration provides diagnoses and informs care for infants with epilepsy. EurekAlert! Press release. August 16, 2023. Accessed August 22, 2023.


Source:, Pearl Steinzor

Wiltshire mum calls for supermarket trolley seats for disabled children

Wiltshire mum calls for supermarket trolley seats for disabled children

A mum from Wiltshire is calling for major supermarkets to introduce trolleys with seats for children with disabilities.

Rachel Mead, from Melksham, has a 16-month-old son, who has two variants of TBCK syndrome.

A rare degenerative brain disorder, it affects Drae’s central nervous system.

Ms Mead has now written about the problem with existing designs to four major supermarkets, which the BBC has asked for comment.

Drae is unable to support his head properly and can no longer sit comfortably in existing trolley seats.

“It’s basically a breakdown of the brain and central nervous system. He has epilepsy and lots of other different problems,” said Ms Mead.

Drae smiling at the camera while playing with toys

Rachel Mead says that Drae cannot sit comfortably in the baby or disability seats currently available in supermarkets


Because of the nature of his condition, Ms Mead said she cannot leave Drae with a babysitter or older sibling.

“We’re now at the stage where he’s too big for the baby trolley seat,” she said

“They only go up to 9kg and he’s 10.5kg. He’s a year and a half old, he’s getting too long, it’s getting uncomfortable.”

Drae pictured in a pram next to his mum

Ms Mead says she struggles to push Drae in his pram whilst also pushing the trolley


“I don’t want to have to do an online shop. I quite enjoy that chore of doing a supermarket shop, it gets us out of the house,” Ms Mead continued.

“I’m not the only one in this position. There’s many people out there struggling.”

Many other parents have shared their difficult experiences of shopping with their disabled children, she said.

Ms Mead has now written to the four top supermarkets, Sainsbury’s, Asda, Tesco and Morrisons, asking for a more accommodating seat to be designed.

She said: “All they need to do is make these baby seats bigger, more of a bucket style, with a five-point harness to support these kids.”

She has also called for the seats to be padded and fitted across the top of the trolley rather than facing the parent.



UTHealth Houston researcher awarded $3.1M NIH grant to study sudden unexpected death in epilepsy

UTHealth Houston researcher awarded $3.1M NIH grant to study sudden unexpected death in epilepsy

8-Aug-2023 1:10 PM EDTby University of Texas Health Science Center at Houston


Newswise — A five-year, $3.1 million grant to study preventive strategies for sudden unexpected death in epilepsy (SUDEP) has been awarded to UTHealth Houston by the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke.

Nuria Lacuey Lecumberri, MD, PhD, associate professor in the Department of Neurology with McGovern Medical School at UTHealth Houston, is principal investigator of the study, which builds upon her years of research analyzing breathing during epileptic seizures and the localization of brain areas involved in breathing regulation.

SUDEP is a devastating complication of epilepsy and a leading cause of premature death in patients with chronic uncontrolled epilepsy. Most attacks occur after a generalized convulsive seizure that leads to respiratory arrest, and patients are typically found in bed, lying flat on their stomachs. Yet, despite the major impact on life expectancy in these patients, no targeted SUDEP preventive strategies currently exist. It occurs more often in patients ages 21 to 40 compared to other age groups, according to the Centers for Disease Control and Prevention.

“The purpose of this research is to increase the understanding of brain respiratory control with the goal of using neuromodulation to enhance respiration after generalized convulsive seizures,” said Lacuey, who sees patients at UTHealth Houston Neurosciences. “Identification of respiratory brain sites capable of stimulation-driven breathing enhancement will help us develop new and innovative neuromodulation approaches for ambulatory SUDEP prevention.”

Most SUDEP is due to post-convulsive central apnea, according to previous research that analyzed patients who died while being monitored in hospital epilepsy units. Crucially, a three-minute post-convulsive “window of opportunity” was identified, beyond which the deadly cascade of respiratory and cardiac failure takes place.

By advancing current understanding of forebrain breathing networks, Lacuey believes her team can develop neuromodulatory, or nerve-stimulating, strategies for respiratory facilitation and apnea rescue that may prevent SUDEP during this critical time window.

They hope to gain a better understanding of forebrain modulation of breathing by using anatomically precise, intracranial stereotactic electroencephalography (SEEG) data that can determine optimal stimulation paradigms to enhance breathing.

The translational impact of these results will set the stage for larger scale clinical trials of breathing modulation as potential anti-SUDEP therapy, using central apnea to trigger responsive neurostimulation in people who are at higher risk of SUDEP. This work will also provide insights into potential treatment of central apnea associated with other diseases, such as Parkinson’s and Alzheimer’s diseases, obesity, heart failure, and stroke.

“Any SUDEP prevention strategy requires successful rescue from such respiratory arrest during this critical time window, and unfortunately, there are no effective strategies for SUDEP prevention,” Lacuey said. “This project identifies neuromodulation approaches for respiratory rescue that will aid in the design of SUDEP preventive interventions.”

The research is funded by NIH Grant No. R01NS133743. UTHealth Houston investigators contributing to the project include Samden Lhatoo, MD; Sandipan Pati, MD; John Mosher, PhD; and Yuri Dabaghian, PhD, all with McGovern Medical School, and Xi Luo, PhD, with UTHealth Houston School of Public Health.


How a Smartphone Can Help You Cope With Epilepsy

How a Smartphone Can Help You Cope With Epilepsy

Epilepsy looks different depending on the person, but here are some strategies for managing symptoms and staying safe.

AS VACCINATION RATES rise and municipalities begin to reopen, remembering simple social behaviors—like making small talk with co-workers or hugging a parent hello—is suddenly baffling. For people with chronic illness like me, I need a refresher on how to manage it in the “real” world. Fortunately, my strategies are one touch away on my smartphone.

I was diagnosed with epilepsy at age 32, and it surprised me to learn that epilepsy is more complicated than treating seizures. It’s a fickle condition because seizures and their triggers are individual and inconsistent, prompting me to continuously monitor my daily activities, emotions, and anti-epileptic medications.

Under pandemic restrictions, my personal epilepsy guidelines slowly blurred. It only took one “normal” weekend and the seizure that came with it for my memory to snap back. Dating and family gatherings require more monitoring when they happen in-person instead of the computer screen from my couch.

Like many health conditions, epilepsy makes me feel a loss of control. Over the past four years, I’ve cultivated strategies to mitigate seizure frequency, care for myself when they occur, and cope with epilepsy’s daily challenges. To find empowerment, I just have to pick up my phone.

Ready, Set, Stop

Staying mentally balanced is important for everyone, but especially for those with epilepsy, as anti-epileptic drugs and seizures are both energy drainers. One simple tip is to take frequent breaks throughout the day.

It’s counterintuitive that pausing brain activity improves cognitive function. A break sounds simple enough, like regular exercise or meditation, but it requires accountability to make it happen.

I use my phone to set an alarm 20 to 45 minutes from the time I sit down at my desk. There’s something jarring about hearing the same sound that wakes you up in the morning while you’re in the middle of writing an email. Just like I do when I wake up, I hit the snooze button twice before begrudgingly getting up from my desk to pick up a magazine, grab a snack, or step outside for a few minutes.

University of Chicago neurologist Richard Kraig explains the importance of breaks for a healthy brain. “Environmental enrichment such as increased intellectual, social, and physical activity can reduce subsequent neurological disease by half, including epilepsy, as well as help restore brain and mental health after the onset of injury,” says Kraig. “For people this can be as simple as periodically taking a casual walk in nature and daydreaming.”

Despite my initial irritation at the interruption, I come back to my desk feeling refreshed with renewed energy.

An Easy Escape

Because stress is a common trigger for seizures, sometimes we need more than a break—we need an immediate escape. This is when I pull out Wordscapes, a friendly crossword app, and immerse myself.

Creating words from a handful of letters, along with the app’s outdoor scenes, grounds me. Word games require mental engagement without emotional attachment. Whether on a crowded bus or fretting over an upcoming meeting, the problem-solving aspect of Wordscapes immediately takes my focus off the stressor. The app exudes positivity with its bright color palette and encouraging messaging.

Word gaming isn’t appealing to everyone, but there are other stress-relieving game apps to check out. I encourage you to find an app that requires focus while providing positive energy.

The Seizure Diaries

Keeping a record of seizures is important for diagnosis, treatment, and lifestyle. There are nearly 100 different seizure tracking apps, making it daunting to find the right one. After testing several, I’m partial to SeizAlarm due to its simplicity.

The diary portion of the app, where I log my seizures, is simple and free. SeizAlarm provides sections to detail the seizure type, emotional state, potential triggers, description of the seizure, and post-seizure description. Each section has a menu of options to choose from. For example, the “Potential Triggers” section lists 10 selections, such as “Stress” and “Hormonal fluctuations” and includes a space to add details.

It’s common to not remember the events before or after a seizure, much less the seizure itself. Providing descriptors prompts my memory, helping to create a more accurate account. Seeing these symptoms and triggers listed in the app is also comforting, as a reminder that they’re normal.

When I’m in a seizure cluster (as in, having several seizures a week), I subscribe to the $14.99 monthly plan for some additional features that help keep me safe. Upon opening the app, the home screen has two buttons. One alerts my emergency contacts via text that I’ve just had a seizure. The other button releases an audio message I’ve previously dictated giving instructions if a kind passersby tries to help and I’m unable to communicate. Everyone has different needs immediately following a seizure, and my recorded message instructs people not to call an ambulance and my that unresponsiveness is normal.

Unfortunately this app is only compatible with the iPhone. An Android equivalent is Seizure Emergency Alert, which also provides logging features and emergency notifications.

Find Comfort in the Familiar

A seizure is an overactivity of neurons in the brain, often leaving people exhausted and disoriented. In the days after, I just want perfunctory comfort. But with my cognitive abilities shot, I can’t remember where to find it. The Notes app on my phone lists all of my post-seizure go-to’s.

The note lists my favorite movies, podcasts, and restaurant deliveries. Film and food aren’t ground-breaking coping strategies by any means, but having a selected inventory of what to do in a post-seizure state has proven helpful for me, and hopefully will for you, too.

“The postictal [post-seizure] state can definitely be a scary time for patients,” says Elizabeth Gerard, a neurologist who specializes in epilepsy at Northwestern Memorial Hospital. “They may have more difficulty with language or decision making. You can feel drained or more anxious, so having calming things to go to is helpful. And, of course, there’s the emotional aspect of having a seizure.”

The psychological fallout of a seizure might require calling upon your favorite people, too. Reaching out isn’t easy, especially when you can’t remember who to call or text. The post-seizure note also includes people to connect with for emotional support.

When You Need a Hug, Turn to Twitter

No matter how much encouragement we get from our loved ones, epilepsy can still feel like a very solitary experience, especially after a seizure. Connecting with people who also struggle with the condition is helpful, but also hard to find.

Empathy certainly isn’t the first thing that comes to mind when we think of Twitter. But there’s a way to tailor your experience on the platform by using Twitter lists, which let you curate content from a self-selected group of people. After searching #epilepsy, I accrued a list of users who tweet frustrations, encouragement, sadness, or start conversations of the epilepsy experience.

Safe conversation is a healing practice, according to Tom Stanton, executive director of Danny Did Foundation, a nonprofit dedicated to epilepsy awareness. “From the grocery store to a board meeting to an event, we have these conversations wherever we can. It gives the space to talk about epilepsy without feeling judged or stigmatized,” he says.

I’ve found the same safety net in my “Epilepsy Peeps” Twitter list. The brevity of a tweet offers manageable reading if my mind is tired but looking for solace. I sometimes reply back with all my brain can muster—a heart emoji. Or other times I don’t respond at all. That’s the beauty of Twitter sometimes: I can find community without spending energy.

Turning my phone into the place that holds my coping mechanisms provides reassurance for this unpredictable condition. Hopefully some of these strategies are helpful for you or someone in your life also living with epilepsy.


Source:, Landis Weidner

UC San Diego Health among First in Nation to Perform Regenerative Brain Cell Procedure for Epilepsy

UC San Diego Health among First in Nation to Perform Regenerative Brain Cell Procedure for Epilepsy

The new experimental cell therapy is part of a national clinical trial aimed at eliminating seizures

“This first-in-human clinical trial represents a paradigm shift in the way we treat this disease process, shifting from procedures that destroy bad tissue to procedures that repair the bad tissue. Our hope is that this procedure has such a high success rate and good tolerability that it becomes the standard of care for all drug-resistant focal epilepsies.”

Jerry Shih, MD, director of the Epilepsy Center at UC San Diego Health

July 26, 2023

In what could lead to a revolutionary advancement in the treatment of temporal lobe epilepsy, UC San Diego Health has become one of the first health systems in the country to inject regenerative cells into the brain to treat epileptic seizures.

Part of a national clinical trial, UC San Diego Health’s multidisciplinary team performed the third ever experimental regenerative brain cell therapy procedure earlier this month. UC San Diego Health is the only nationally designated Level 4 Adult Epilepsy Center in the region.

During the surgery, Sharona Ben-Haim, MD, associate professor of neurological surgery at University of California San Diego School of Medicine and surgical director of epilepsy at UC San Diego Health, made multiple injections of inhibitory brain cells into mapped out precision points of the patient’s brain under the bright lights of the operating room.

The cells, called interneurons, are derived from human stem cells. If successful, the first-ever regenerative human cell experimental therapy, NRTX-1001, could provide drug-resistant temporal lobe epilepsy patients with the first non-destructive option to potentially cure their seizures.

In between setting up multiple trajectory points on the patient’s brain prior to the cell insertion, Ben-Haim carefully studied the intra-operative magnetic resonance imaging scans that pinpoint her every move.

While digitally rotating the brain three-dimensionally on screen to inspect her work, Ben-Haim explained, “This experimental therapy offers us the potential to essentially restore the balance in the brain to be able to calm and ideally stop the seizures, while retaining the normal function of that part of the brain. Currently, we do not have a therapy that allows us to do that, so this is really exciting.”

Ben-Haim performing surgery UC San Diego Health


The clinical trial, sponsored by Neurona Therapeutics, is seeking to enroll 40 participants across the country to study the results of the implantation of the interneurons, which produce gamma-aminobutyric acid (GABA) — a neurotransmitter that blocks overactive impulses between nerve cells in the brain.

“In drug-resistant temporal lobe epilepsy, some of the normal brain cells in the temporal lobe have been damaged or are dead,” said Jerry Shih, MD, professor of neurosciences at UC San Diego School of Medicine, neurologist and director of the Epilepsy Center at UC San Diego Health. “This experimental cell therapy implants healthy human brain cells into the damaged temporal lobe with the hope that those new cells will begin establishing connections in the patient’s brain, to ultimately make a healthier temporal lobe.”

Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer’s disease, according to the Centers for Disease Control and Prevention. An estimated 3.4 million Americans have epilepsy and approximately one-third of those individuals do not respond to anti-seizure medications.

Traditional seizure reduction therapies involve removing or laser-burning the parts of the brain where the seizures originate or implanting deep-brain electrodes to modulate seizure activities. This new experimental regenerative therapy could potentially treat multiple parts of the brain without tissue removal, offering new hope to drug-resistant epilepsy patients.

“This first-in-human clinical trial represents a paradigm shift in the way we treat this disease process, shifting from procedures that destroy bad tissue to procedures that repair the bad tissue,” Shih said. “Our hope is that this procedure has such a high success rate and good tolerability that it becomes the standard of care for all drug-resistant focal epilepsies.”

Back in the operating room, Ben-Haim meticulously inspected her work on her patient’s brain. He is the third person in the nation to undergo the procedure, which was initiated at SUNY Upstate Medical University in Syracuse, New York in June 2022, followed by Oregon Health Sciences University in Portland, Oregon in November 2022.

“These patients are willing to try an experimental procedure in this clinical trial to get control of their seizures, and I think they are incredibly brave,” Ben-Haim said. “We are already seeing improvements in as early as one month. Our ultimate goal is to improve a patient’s long-term quality of life.”

Sharona Ben-Haim


Patients who participate in the trial will be monitored regularly for two years after the procedure to study the effects of the implanted interneurons. Preliminary data reported in June demonstrates a more than 90% reduction in seizure frequency in the first and second patients at one year and seven months, respectively, post-treatment.

Shih, the principal investigator for UC San Diego Health’s involvement, said the study is the most complex clinical trial he’s served on in his career, spanning 25 years of conducting clinical trials at three leading academic institutions across the country.

“This study can only be conducted in an institution with a strong clinical and research infrastructure, which we are fortunate to have here at UC San Diego Health,” Shih said.

He added that it required tremendous coordination among UC San Diego teams, including faculty and staff from neurosciences, neurosurgery, cellular regenerative medicine, radiology, neuropsychology and neuro critical care; California Institute for Regenerative Medicine Alpha Clinic at the Sanford Stem Cell Clinical Center; Advanced Cell Therapy Lab; Center for Multimodal Imaging and Genetics and the Consortium for Regenerative Medicine.

“We would not have been able to participate in this study without the active collaboration of all these integral groups. It truly takes a village.”


Source:, Annie Pierce