Patients With Epilepsy Navigate Murky Unregulated CBD Industry

Patients With Epilepsy Navigate Murky Unregulated CBD Industry

In 2013, Tonya Taylor was suicidal because her epileptic seizures persisted despite taking a long list of medications.

Then a fellow patient at a Denver neurologist’s office mentioned something that gave Taylor hope: a CBD oil called Charlotte’s Web. The person told her the oil helped people with uncontrolled epilepsy. However, the doctor would discuss it only “off the record” because CBD was illegal under federal law, and he worried about his hospital losing funding, Taylor said.

The federal government has since legalized CBD, and it has become a multibillion-dollar industry. The FDA also has approved one cannabis-derived prescription drug, Epidiolex, for three rare seizure disorders.

But not much has changed for people with other forms of epilepsy like Taylor who want advice from their doctors about CBD. Dr. Joseph Sirven, a Florida neurologist who specializes in epilepsy, said all of his patients now ask about it. Despite the buzz around it, he and other physicians say they are reluctant to advise patients on over-the-counter CBD because they don’t know what’s in the bottles.

The FDA does little to regulate CBD, so trade groups admit that the marketplace includes potentially harmful products and that quality varies widely. They say pending bipartisan federal legislation would protect those who use CBD. But some consumer advocacy groups say the bills would have the opposite effect.

Caught in the middle are Taylor and other patients desperate to stop losing consciousness and having convulsions, among other symptoms of epilepsy. They must navigate the sometimes-murky CBD market without the benefit of regulations, guidance from doctors, or coverage from health insurers. In short, they are “at the mercy and the trust of the grower,” said Sirven, who practices at the Mayo Clinic in Jacksonville.

While the CBD industry is new territory for the FDA, people have used cannabis to treat epilepsy for centuries, according to a report co-authored by Sirven in the journal Epilepsy & Behavior.

More than 180 years ago, an Irish physician administered drops from a hemp tincture to an infant experiencing severe convulsions. “The child is now in the enjoyment of robust health, and has regained her natural plump and happy appearance,” Dr. William Brooke O’Shaughnessy wrote at the time.

Much of the recent interest in CBD stemmed from the 2013 CNN documentary “Weed,” which featured Charlotte Figi, then 5, who had hundreds of seizures each week. With the use of CBD oil, her seizures suddenly stopped, CNN reported. After that, hundreds of families with children like Charlotte migrated to Colorado, which had legalized marijuana in 2012. Then in 2018, the federal government removed hemp from the controlled substances list, which allowed companies to ship CBD across state lines and meant families no longer needed to relocate.

The FDA still prohibits companies from marketing CBD products as dietary supplements and making claims about their benefits for conditions such as epilepsy.

The agency is gathering “research, data and other safety and public health input to inform our approach and to address consumer access in a way that protects public health and maintains incentives for cannabis drug development through established regulatory pathways,” Dr. Janet Woodcock, then the FDA’s acting commissioner, said in 2021, according to a dietary supplements trade group.

“The FDA has really done little to protect consumers from an unregulated marketplace that they have created,” said Megan Olsen, general counsel for the Council for Responsible Nutrition, a different dietary supplements trade group.

A recent study in Epilepsy & Behavior on 11 oils found that three contained less CBD than claimed, while four contained more. Charlotte’s Web contained 28% more CBD than advertised, according to the report. The study also pointed out that the problems “mirror concerns” raised for generic anti-seizure medications, which the FDA does regulate.

“I’m not anti-CBD,” said Barry Gidal, a professor of pharmacy and neurology at the University of Wisconsin-Madison who co-authored the study and worked as a consultant for the Epidiolex manufacturer. “There needs to be oversight so that patients know what they are getting.”

Some states, such as Michigan, have cannabis regulatory agencies. As such, Dr. Gregory Barkley, a neurologist at Henry Ford Hospital in Detroit, thinks that when a person shops at one of the state’s dispensaries, “you have a pretty good idea of what you’re getting.” Barkley regularly reviews his patients’ CBD products and discusses how many milligrams they take to help control their epilepsy.

But Barkley said CBD has inherent variability because it comes from a plant.

“It’s no different than saying, ‘I’m going to treat you with a Honeycrisp apple for an ailment.’ Every apple is a little bit different,” said Barkley. “The lack of standardization makes it difficult.”

About five years ago, Trina Ferringo of Turnersville, New Jersey, asked a pediatric neurologist about giving CBD to her teenage son, Luke, because his prescription drugs were causing severe side effects yet not preventing his epileptic seizures. The doctor was “adamantly opposed to it” because of the lack of FDA oversight and concerns it might contain THC, the chemical in marijuana that produces a high, Ferringo recalled.

Instead, in 2018, the doctor prescribed Epidiolex. Luke went from having several seizures each week to a couple per month. Ferringo is pleased with the outcome but now often fights with her insurance company because Epidiolex, which has a list price of $32,500 per year, isn’t approved for her son’s form of epilepsy.

Charlotte’s Web typically costs between $100 and $400 each month, depending on how much someone takes. Unlike Epidiolex, insurance never covers it.

Beyond the cost difference, it’s unclear whether a highly purified CBD product such as Epidiolex is more effective than products like Charlotte’s Web that contain CBD and other plant compounds, creating what scientists describe as a beneficial “entourage effect.”

A 2017 review of CBD studies in the journal Frontiers in Neurology, authored by scientists in the cannabis industry, found 71% of patients with treatment-resistant epilepsy reported a reduction in seizures after taking the CBD-rich products, but among patients taking purified CBD, the share was only 46%.

Patients taking CBD-rich products rather than purified CBD also reported taking lower daily doses and experiencing fewer side effects.

“Every cannabinoid when individually tested has a degree of anticonvulsant properties so that if you give a blend of various cannabinoids, they will have some additive effect,” Barkley said.

Bipartisan legislation pending in Congress would designate CBD as a dietary supplement or food. The Senate version would allow the federal government to “take additional enforcement actions” against such products.

Jonathan Miller, general counsel to the U.S. Hemp Roundtable, a coalition of hemp companies, said the legislation would protect consumers and allow CBD manufacturers to sell their products in stores as dietary supplements.

However, Jensen Jose, counsel for the Center for Science in the Public Interest, said such legislation would actually make consumers less safe. The FDA does not have the authority to review dietary supplements for safety and effectiveness before they are marketed and does not routinely analyze their ingredients.

“If a CBD company right now is doing something questionable or potentially unsafe, the FDA can easily remove the product simply for being illegally marketed as a drug,” said Jose. If the legislation passes, he said, the FDA could not do that.

Instead, Jose said, Congress should provide the FDA with more authority to regulate CBD and dietary supplements and more funding to hire inspectors.

The FDA does not comment on pending legislation, spokesperson Courtney Rhodes said.

Patients like Taylor, the Colorado woman with epilepsy, aren’t waiting for the federal government. After the doctor’s visit, she borrowed money from family members and purchased a bottle of Charlotte’s Web.

“The effects were night and day,” she said. “I was able to get out of bed.”

She befriended a grower and spends about $50 per month on CBD powder, gummies, and oil. She now takes only one prescription medication for seizures rather than four. She has about one seizure per month, which means she can’t drive. Her medical providers still don’t seem open to discussing CBD, she said, but that doesn’t bother her much.

“After being on it for this many years and seeing the evidence — the 180-degree turnaround that my life made — it’s a choice I’m going to make whether they are with it or they are against it,” she said. “It’s working for me.”


Source:, Eric Berger

Imogen Clark says epilepsy won’t stop her Commonwealth Games dream

Imogen Clark says epilepsy won’t stop her Commonwealth Games dream

Imogen Clark’s love for swimming was more powerful than the fear of having seizures in the water, propelling her to the 2022 Birmingham Commonwealth Games.

The Chesterfield-born star had a seizure in the pool aged 13 and was diagnosed with photosensitive epilepsy a year later. Clark’s doctors asked her to halt her swimming ambitions but undeterred, she swam with a different-colour cap to the rest of the kids so coaches could spot her.  “That was a real turning point, whether I would carry on or stop,” she said. “Whatever comes my way, I don’t want to be defeated by it and I never thought for a second I would stop swimming. “It was scary to think that it happened in the pool but swimming was always something I was so passionate about. That’s what kept me going.”

Now Clark is one of Britain’s leading breaststrokers and will go for gold at the 2022 Commonwealth Games in Birmingham. The 22-year-old will take one tablet in the morning and one in the evening for the rest of her life, with the resonance of her battles with adversity echoing down the years.

“[Epilepsy] has definitely shaped my resilience,” she said. “It’s made me the person I am today. With the Birmingham 2022 Commonwealth Games set to inspire people and communities across the country this summer, Clark hopes sharing her story will give others motivation to get involved in sport and turn their dreams into reality.

“I’m privileged that I can have a good quality of life and it doesn’t affect me day-by-day in the same way it does other people. “I want other people in my position to go out and think they can achieve things too. ”Clark has made her name on the global stage with record-breaking performances at the innovative International Swimming League (ISL), under the banner of the LA Current franchise.

The short-course event is known for its revolutionary event presentation – specifically light shows – posing a clear challenge to Clark’s medical condition. ISL managers and Clark’s team are all aware of the issues that environment poses.

“It can be a bit scary,” she said. “I have to think that I am on medication and surrounded by the medical team so I just try and put it to the back of my head. All I can do is manage it.”

Clark has used the ISL as vital racing exposure during Covid-19 after she missed the British team for last year’s European Championships and Olympic Games. Last November, she set a new national 50m breaststroke world record en route to beating four-time world champion Alia Atkinson. Clark’s time of 29.32 seconds made her the ninth-fastest woman ever over that distance.

“The main thing I’ve learned is that the girls who are at the highest level absolutely love it,” she said. “Once you’ve found your happy place in life, you can train much more and enjoy it. All the girls have a laugh before we race and it’s a good atmosphere, like a hobby.” The sprinter broke out with European silver in Glasgow back in 2018, her major Championship debut.

In late 2019 she moved south to be based in Winchester, a switch that was scuppered in part due to lockdowns, and she is now back home training at Derventio Excel. Clark returns to the big stage at the Commonwealth Games as a happy swimmer, confident that speed will follow.

This summer, Team England, supported by National Lottery funding, will comprise over 400 athletes in total, and having secured her place on the squad, Clark is looking to capitalise on the once in a lifetime opportunity for medal success in her home country.

“I’ve grown so much as a person [since 2018],” she said. “I think mostly it is the mentality.

“This sport is so savage and sometimes it feels like you don’t have that many people supporting you and it can feel like you are against the world.

“The better athlete I become I realise how much harder it is, so you have to have balance and I’ve got that now and I’m back home.

“It was a lot about figuring out what I valued in life and for me it was swimming and family.”


Source:, Sportsbeat

FDA approves oral treatment for partial seizures in patients aged 16 years and older

FDA approves oral treatment for partial seizures in patients aged 16 years and older

The FDA has granted approval to Azurity Pharmaceuticals Inc. for its oral adjunctive therapy to treat partial seizures in adolescents and adults aged 16 years and older with epilepsy.

According to a company release, Zonisade (zonisamide oral suspension, Azurity) was approved in a 100 mg/5 mL liquid dose for oral administration once or twice per day. The efficacy and tolerability of the drug was established through three double-blind, placebo-controlled, multicenter clinical trials.

“Zonisade is the first and only FDA-approved oral liquid formulation of zonisamide, and it offers health care providers an important new treatment option for their patients with epilepsy,” Richard Blackburn, CEO of Azurity Pharmaceuticals, said in the release. “We are excited about this approval as we continue to grow our portfolio of liquid medications that meet the individual needs of certain patients.”

An estimated 65 million people worldwide have epilepsy, and one in 26 people will develop epilepsy in the United States, the release stated.


Source:, Heather Biele

FSU team makes discovery advancing epilepsy research

FSU team makes discovery advancing epilepsy research

A team of Florida State University College of Medicine researchers has found a link between a specific protein in the brain and increased vulnerability to neurodegeneration for individuals with temporal lobe epilepsy (TLE).

TLE is the most common form of epilepsy in adults and is often resistant to medication. Professor of Biomedical Sciences Sanjay Kumar, who led the study, said the team used a novel technique that made it possible to study small amounts of tissue from hard-to-reach regions within the brain. Kumar, FSU researcher Stephen Beesley and former doctoral student Thomas Sullenberger focused on a chemical messenger called glutamate and one of its receptors, N-methyl-D-aspartate (NMDA).

Glutamate plays a major role in learning and memory, and it must be present in the right concentration at the right time for the brain to function properly. It is also the body’s most abundant amino acid, a building block of protein.

The team discovered that although two proteins commonly associated with NMDA — GluN1 and GluN2 — were evenly distributed in a critical hippocampal region of the brain, a third one — GluN3 — was distributed on a gradient. A pattern of neuron loss in the hippocampal and para-hippocampal regions of the brain is a hallmark feature of TLE.

“The relationship between GluN3 and cell loss was not known until this research,” Kumar said. “This advance in cellular biology is an important step for developing therapies to help patients.”

Because GluN3 makes neurons more susceptible to calcium-induced cellular damage, the discovery helps researchers narrow the focus to identify exactly where neurons are dying and in how large an area.

Kumar has applied to patent the novel technique, known as area-specific tissue analysis (ASTA), that he developed. ASTA’s added precision created an improved method of testing for both the presence and volume of specific proteins linked to TLE.

Ultimately, Kumar said, discovering the gradient distribution of GluN3 will allow researchers to access more relevant tissue samples.

“This research shows how area-specific tissue analysis can be a useful tool,” he said. “I’m excited to explore what further research with this technique can uncover.”

The Kumar Lab focuses on deciphering the basic mechanisms underlying TLE, as well as identifying and isolating vulnerable cells and circuits within the hippocampal region to promote the discovery of more effective therapies and interventions.

The work is supported in part by a grant from the National Institute of Neurological Disorders and Stroke, a division of the National Institutes of Health.



Disney Star Cameron Boyce’s Death Tied to Epilepsy, Coroner Says

Disney Star Cameron Boyce’s Death Tied to Epilepsy, Coroner Says

Disney star Cameron Boyce’s cause of death was “sudden unexpected death in epilepsy,” according to the Los Angeles County Department of Medical Examiner-Coroner.

Boyce, who was born on May 28, 1999, was found unresponsive in his home on July 8. He was pronounced dead at the scene at 2:35 p.m. Boyce’s initial autopsy was performed the same day.

The medical examiner/coroner determined Boyce’s cause of death following addition testing. The manner of his death was certified as “natural,” per the office’s summary

“He passed away in his sleep due to a seizure which was a result of an ongoing medical condition for which he was being treated,” a Boyce family spokesperson told ABC News the day after Cameron passed. “The world is now undoubtedly without one of its brightest lights, but his spirit will live on through the kindness and compassion of all who knew and loved him.”

Boyce starred in Disney’s “Descendants” franchise, in Adam Sandler’s “Grown-Ups” movies, as well as on TV’s “Jessie,” among other series and films.

Below is the full summary as made available to the media on Tuesday.


Source:, Tony Maglio

Epilepsy: Recognising A Crisis In Time And What To Do About It

Epilepsy: Recognising A Crisis In Time And What To Do About It

Epilepsy is a chronic neurological disease affecting the cerebral cortex. It is characterised by the repetition of epileptic seizures over time: a single seizure, e.g. caused by a very high fever, is not sufficient to diagnose the disease

The causes that trigger this disease can be traced back to genetic factors and/or are consequences of damage to the brain, such as head trauma, tumours, infectious or inflammatory diseases, and strokes.

There are two peaks of onset, the first in infancy – childhood, the second in old age.

Epileptic seizures may be convulsive or non-convulsive

The most conspicuous and best known are the former, characterised by shaking and muscle stiffening, frothing at the mouth and loss of consciousness lasting from a few seconds to one or two minutes.

After the attack, one may remain unconscious or sleep for several minutes or even hours.

Epilepsy, how to recognise the imminent arrival of a seizure?

Epilepsy can manifest itself with some inconspicuous, but repetitive symptoms over time, which the patient learns to recognise.

It is important for the patient to learn to recognise the imminent arrival of a seizure, so as to position himself in a place where he cannot hurt himself by losing consciousness.

A convulsive seizure is usually preceded by a feeling of malaise, lethargy, sometimes unpleasant sensations in the stomach similar to a fist, with palpitation and redness of the face (the so-called ‘epigastric aura’).

Others are related to loss of orientation or visual, olfactory and sound hallucinations.

Or impressions of ‘already seen’ or ‘already experienced’ (dysmnesic crises), moods of sudden fear similar to panic attacks (affective crises), accompanied or not by severe nausea.

What should one do when one realises that a crisis is coming?

A convulsive crisis is experienced as a traumatic event both in those who experience it and in those who witness an attack.

The first rule is to use common sense and put into practice some simple safety measures to protect oneself from falling objects or other dangers that could injure him/her.

It is important to place oneself in a place where one cannot hurt oneself, interrupting any activity.

Get out of the shower immediately, for example, or pull over with your car if you are driving.

If you are in the company of other people, warn them of the impending attack.

Is epilepsy still an obstacle to quality of life?

Today, people with epilepsy can lead normal working and social lives.

There are some restrictions that affect certain professions such as aircraft pilots and certain sports such as parachuting or diving.

Driving licences are subject to European regulations.

There are two ‘habits’ that are not recommended for sufferers of this disease: sleep deprivation, because it increases the risk of seizures, and getting drunk because alcohol in excess reduces and lowers alertness as well as interacting with the medication one takes on a daily basis.

It should be emphasised that women suffering from epilepsy can also face pregnancy, childbirth and breastfeeding with serenity and conceive healthy children even if they are on anti-epileptic drug therapy.

If properly treated, patients can lead normal active and productive lives in all respects, from work to social life.



Disrupting the brain to stop Izzy’s seizures

Disrupting the brain to stop Izzy’s seizures

EPTUNE, N.J. (Ivanhoe Newswire) – One little boy struggled with epilepsy since just after birth – at one point, having up to 50 seizures a day. Pediatric neurosurgeons mapped out a procedure that disrupted the brain signals triggering his seizures.

Hydrocephalus is a condition where fluid builds in brain cavities, causing potentially damaging pressure on the brain. Surgeons implant a tube called a shunt to drain the excess fluid and relieve the pressure. But for some patients, health struggles don’t end there. As many as 35 percent of children born with hydrocephalus develop epilepsy, which includes life-altering chronic seizures.

Israel “Izzy” de La Cruz has gone through more in his five years than most people do in a lifetime. His mom, Shukreeah, was 30 weeks pregnant when an ultrasound technician detected something wrong.

Shukreeah remembers what the doctors told her. “‘Your son has hydrocephalus.’ And he’s like, ‘That’s basically water in the brain.’”

Doctors delivered Izzy by C-section and three weeks later, surgeons implanted a shunt to drain fluid. At just three months, seizures started and by 2018, he was having 50 seizures a day.

“He would just turn blue and purple. Those were probably the scariest seizures I’ve ever seen,” Shukreeah expresses.

Pediatric neurosurgeon at the Jersey Shore University Medical Center, Dr. Lawrence Daniels, explains, “These seizures were life-threatening at this point.”

Surgery was Izzy’s best option. Altogether, Izzy had nine brain surgeries, including one where Dr. Daniels removed a portion of his skull and slid an electrical grid on top of the brain to precisely measure the seizure activity.

“And if we could do that, there was an opportunity to disrupt that part of the brain and stop the seizures from spreading to the opposite side,” Dr. Daniels says.

Once doctors pinpointed the place where the seizures started, they were able to remove part of his temporal lobe to disrupt them.

Shukreeah knows Izzy suffers developmental delays but hopes with physical therapy, her son will crawl and then, someday walk and talk. Either way, she says Izzy is a gift.

“This little boy wakes up with a smile every single day, just to be grateful for life and to wake up,” Shukreeah says about her son.

Doctors say Israel is still on medication to control his seizures. The number of seizures has dramatically decreased – his mother says he’s gone from having those 50 seizures a day to just one.


Source:, Cyndy McGrathKirk Manson, Roque Correa

Hot tips for coping in the heatwave

Hot tips for coping in the heatwave

A survey* carried out by the Epilepsy Society showed that 62 per cent of people with uncontrolled seizures experience an increase in their seizure activity during unusually hot weather.

In the current heatwave, it is important to make sure that you take sensible precautions to ensure that you stay cool, particularly if you know your epilepsy is sensitive to the heat. Here are a few tips that may help:

  • Try to avoid going out in the sun at midday when it is hottest. If possible, limit outdoor activities to early morning or early evening when temperatures are likely to be cooler
  • Make sure you keep well hydrated. Your brain is 78 per cent water so its performance will quickly be affected by lack of water. Keep a supply of water with you wherever you go
  • Where possible, stay cool in an air-conditioned room or use a fan to keep air circulating
  • Closing curtains and blinds can help to keep a room cool
  • Wear cool, light-coloured clothing that won’t absorb the heat
  • Listen to your own body. If you are feeling weak, dizzy or over-heated, take a break and find somewhere shady to relax. Tell a friend or family member how you are feeling
  • Keep your epilepsy medication in a cool place, out of direct sun and make sure you take as prescribed
  • Cooling off in the pool is always refreshing but remember to follow all the usual precautions – don’t swim alone; swim with a friend or family member; tell the lifeguard you have epilepsy; don’t swim in open water where there is no lifeguard; even a paddling pool can pose a danger if you have epilepsy – always cool off with a friend, never alone.

*The charity conducted its survey following the week of 21-27 June 2020, when temperatures soared above 30 degrees Celsius.

Climate change survey

Epilepsy Climate Change – EpiCC – led by Professor Sanjay Sisodiya, is trying to understand more about how people affected by neurological conditions believe climate change will affect their health and the health of others.
They would be grateful if you could fill in this short 15-minute survey. Thank you.


Source:, Nicola Swanborough

Even in sleep, your brain’s neurons are humming along to Mozart

Even in sleep, your brain’s neurons are humming along to Mozart

UCLA research shows a little night music prompts a big response from the brain, except in one key area

You’re fast asleep. But some regions of your brain tasked with hearing sound aren’t taking the night off, according to new research from scientists at UCLA and Tel Aviv University.

A unique study of brain activity in the cerebral cortex of epilepsy patients found there was a robust response to sound during sleep that largely mirrored the brain’s response during wakefulness. However, there was one key difference from wakefulness, namely in the level of alpha-beta waves. The attenuation of these waves characterizes the awake state and indicate neural feedback from higher brain centers helping to understand sound and anticipate what may come next. This was the key factor lacking in sleep. 

“The neuronal orchestra is never shut from the environment when the person is deep asleep,” said Dr. Itzhak Fried, a study co-author and director of UCLA’s Epilepsy Surgery Program. “The neurons are like musicians playing Mozart, each one with great fidelity and volume. Only the conductor, the one who monitors performance and leads expectations, is missing.” 

The study was published online Monday in the journal Nature Neuroscience.

Fried, who in previous research has extensively studied the brain’s activity during wake and sleep, said the findings could help us understand to what extent information is being processed by people in unconscious states, such as comatose patients or those under anesthesia. They may also point to ways, possibly by auditory stimulation, of enhancing memory during sleep, when the brain consolidates recent information. 

Researchers had an unusually up-close view into the activity of single brain cells in patients with severe epilepsy through electrodes that were implanted in their brains to identify where seizures were occurring for potential curative surgery. Patients at UCLA and Tel Aviv Sourasky Medical Center who agreed to participate in the study were set up with bedside speakers that played words and music when the patients were awake and listening, as well as sound asleep. Fittingly, one of the musical choices in the study was Mozart’s “Eine kleine Nachtmusik,” or “A Little Night Music.”

Over 7 years, the team collected data from over 700 neurons during wakefulness and different stages of sleeping, allowing them to compare neuronal activity and brain waves. Brain cells in the primary auditory cortex responded most vigorously during sleep, but there was a decline in the “top-down” neural feedback from higher brain regions that mediate attention and expectation.

“That’s probably why we are still not conscious, although we are still processing the sensory information from the external world. So you’re not completely shut from the environment in that sense,” Fried said.


Source:,  University of California, Los Angeles (UCLA), Health Sciences


What is Sandifer syndrome?

What is Sandifer syndrome?

Sandifer syndrome a rare disorder that usually affects children up to the ages of 18 to 24 months. It causes unusual movements in a child’s neck and back that sometimes make it look like they’re having a seizure. However, these symptoms are usually caused by severe acid reflux, or gastroesophageal reflux disease (GERD).


What are the symptoms? 

The main symptoms of Sandifer syndrome are torticollis and dystonia. Torticollis refers to involuntary movements of the neck. Dystonia is a name for writhing and twisting motions due to uncontrollable muscle contractions. These movements often cause children to arch their backs.

Additional symptoms of Sandifer syndrome and GERD include:

  • head nodding
  • gurgling sounds
  • coughing
  • trouble sleeping
  • constant irritability
  • poor weight gain
  • choking
  • breath-holding spells
  • slow feeding
  • recurrent pneumonia


What causes it?

Doctors aren’t sure about the exact cause of Sandifer syndrome. However, it’s almost always related to a problem with the lower esophagus, which leads into the stomach, or a hiatal hernia. Both of these can lead to GERD.

GERD often causes chest pain and throat discomfort, and studies suggest that the movements associated with Sandifer syndrome are simply a child’s response to pain or way of relieving discomfort.


How is it diagnosed?

Some of the symptoms of Sandifer syndrome can be hard to distinguish from a neurological problem, such as epilepsy. Your child’s doctor may use an electroencephalogram (EEG) to look at electrical activity in the brain.

If the EEG doesn’t show anything unusual, the doctor might do a pH probe by inserting a small tube down your child’s esophagus. This checks for any signs of stomach acid in the esophagus over 24 hours. The probe might require an overnight hospital stay.

You can also keep a log of feeding times and when you notice your child having symptoms. This can help your child’s doctor see if there are any patterns, which can make diagnosing Sandifer syndrome easier.


How is it treated?

Treating Sandifer syndrome involves trying to reduce symptoms of GERD. In many cases, you may just need to make some changes in feeding habits.

These include:

  • not overfeeding
  • keeping your child upright for a half-hour after feeding
  • using a hydrolyzed protein formula if you’re formula feeding or eliminating all dairy from your diet if you’re breastfeeding because your doctor suspects your child might have a milk protein sensitivity
  • mixing up to 1 tablespoon of rice cereal for every 2 ounces of formula in the baby bottle

If none of these changes work, your child’s doctor might suggest medication, including:

  • H2 receptor blockers, such as ranitidine (Zantac). Ranitidine, brand name Zantac, is now marketed as Zantac 360, which contains a different active ingredient (famotidine). Famotidine is in the same class as ranitidine and works the same way but has not been found to contain unacceptable levels of NDMA.
  • antacids, such as Tums
  • proton pump inhibitors, such as lansoprazole (Prevacid)

Each of these medicines has potential side effects and may not always reduce symptoms. Ask your doctor about the risks versus benefits of any recommended medicine for your baby.

In rare cases, your child may need a surgical procedure called Nissen fundoplication. This involves wrapping the top of the stomach around the lower esophagus. This tightens the lower esophagus, which prevents acid from coming up into the esophagus and causing pain.


What’s the outlook

In children, GERD usually goes away on its own after they’re about 18 months old, when the muscles of their esophagus mature. Sandifer syndrome usually also goes away once this happens. While it’s often not a serious condition, it can be painful and lead to feeding problems, which can affect growth. So if you notice possible symptoms, see your child’s doctor.


Source:, George Citroner, Karen Gill, M.D.

My Take: Several of our heroes lived with disabilities and flourished

My Take: Several of our heroes lived with disabilities and flourished

Independent Living is as American as Apple Pie and Parades on the Fourth of July.

Two hundred and forty-six years ago, a document composed by a man with a learning disability changed our nation forever. Historians believe that Thomas Jefferson, the brilliant writer of the Declaration of Independence, had dyslexia. So did our first president, George Washington.

They were not alone.

James Madison, our fourth president and the “Father of the Constitution” had epilepsy. Abraham Lincoln had depression. Franklin D. Roosevelt led our country through the Great Depression and World War II while using a wheelchair due to contracting polio in his childhood. Dwight D. Eisenhower had Chron’s Disease, a health-related disability. This did not stop him from winning on the beaches of Normandy, nor did it hinder his ability to lead our nation as its president. Teddy Roosevelt had a visual impairment caused by an injury.


Abraham Lincoln had depression.

We would not have America as we know it today without these leaders with disabilities. They were and are an integral part of our history and often, their disabilities are overlooked or completely forgotten.

Nationally, Centers for Independent Living, embrace and share the Independent Living Philosophy that is clearly linked to the founding of our country. The philosophy holds that people with disabilities are the experts of their own lives and have the ability and freedom to choose how and where they want to live, just as the colonists did when they signed the Declaration of Independence.

Franklin D. Roosevelt led our country through the Great Depression and World War II while using a wheelchair due to contracting polio in his childhood.

And just as the American Dream varies from person to person, so too does independent living. For some, independent living means residing alone in their own home through structural modifications and for others it means choosing to live with a roommate and/or support person.

Independent living is as diverse as the American Dream, and CILs exists to help people realize their own unique version. However, people with disabilities regularly encounter barriers to independent living and their American Dream. It was not until 1990, more than 200 years after the signing of the Declaration of Independence, when the passage of the Americans with Disabilities Act afforded people with disabilities the same federal protections under the law that those without disabilities take for granted. Even with the passage of the ADA, far too many businesses, events and recreational opportunities, and employment openings are still not accessible to people with disabilities. At a time when the national unemployment rate is 3.6 percent, people with disabilities are still unemployed at more than double that rate.

Without meaningful employment, accessible and affordable housing options, and integrated community participation activities, the American Dream of Independent Living is out of reach for far too many people with disabilities.

Disability Network Lakeshore, a Center for Independent Living, has operated in Ottawa and Allegan counties since 1992. For 30 years, we have helped thousands of Michiganders chase their version of the American Dream and Independent Living through our five core services: Advocacy, Information and Referral, Peer Support, Skills Development and Transition.

The organization’s staff brings more than 150 years of combined experience coming alongside people with disabilities to decide how they want to live, work and play.

The next time you consider the freedoms that you enjoy, we ask you to consider that many of our founders and early leaders of this country lived with a disability. Think about how that must have impacted the words they chose to impart on us “… that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

We could not agree more.


Source:, Amanda Rhines-Poehlman

Living with a disability made me who I am

Living with a disability made me who I am

Growing up with epilepsy, I had never considered myself a disabled person because I hated the pity people glommed onto me and just wanted to be like every other kid. My seizure disorder changed how I grew up in a multitude of ways. There were childhood experiences I didn’t quite get to have, jokes made at my expense, scornful comments about my “special treatment.” This Disability Pride Month, I’m thinking about how my diagnosis and the way others reacted to it has shaped my life.

In third grade, at 8 years old, I had my first grand mal seizure, which included the characteristic dropping-to-the-floor convulsions. I remember that day very specifically; it was a regular school day, but I was sent home to my grandparents’ house early by the nurse because I felt unwell and had a massive headache. At my grandparents’ house, I rested some and later started building a fort out of the couch cushions, but that’s where my memory stops. I had no memory of losing consciousness. I had no warning right before. Just like that, the seizure began. I woke up in a completely different part of the house. My grandparents were staring at me aghast and asked how I felt and if I needed anything before informing me that an ambulance was on its way. The rest of that day and night was such a blur. I didn’t understand what was wrong or why everyone was so scared.

After seeing a neurologist and undergoing an electroencephalograph, or EEG, which detects anomalies in my brain activity, I was diagnosed with epilepsy. Epilepsy is a seizure disorder where anomalous brain activity is brought on by circumstances such as flashing lights, strenuous activity and loud noises. Thus began the rest of my childhood surrounded by caution.

There are many things I couldn’t do that other kids wouldn’t think twice about. For a while, I wasn’t allowed to bathe alone. I didn’t get to swim without a parent in the water. I couldn’t be in the orchestra right after gym class. My teacher wouldn’t let me go into the planetarium with the rest of the class because of the photosensitive viewer warning. When I would leave the gym to prevent a seizure, my classmates were always jealous that I didn’t “have” to do the work while I sat in the dark nurse’s office crying. I wanted to do all those things; it was just never in the cards for me.

I didn’t experience direct bullying over my disorder, as many disabled people often have, but if I had a nickel for every seizure joke I’ve heard, I may have been able to afford the medication and testing I needed. Never was I upset or mad at being the butt of such jokes, but the rest of my family hated them with a passion. It’s incredibly inconsiderate when some kid shakes themselves as their friend says, “Oh no! They’re having a seizure!” as the two laugh hysterically. Seizures are confusing and were downright mortifying for the people around me witnessing it. I was kept in a bubble because the danger is real and people die because of seizures. Some people with high-frequency epilepsy can even experience sudden death and, according to the Centers for Disease Control and Prevention, about 3,000 people in the U.S. die from it every year.

At 14, I was weaned off of my medication after several years without a grand mal seizure. However, the anomalous brain activity didn’t go away, and I still experience smaller conscious and unconscious focal seizures every now and then. They can be a hindrance on my day-to-day life and will often attract odd looks from the people around me.

Disability Pride Month is really about being open with ourselves and others regarding disability as well as dispelling hate and ableism. Many people, such as myself, have struggled with internalized ableism toward themselves and a refusal to accept being disabled. This month is about taking pride in our differences and accepting our challenges as part of who we are.

It’s important with this Disability Pride Month to share real experiences from disabled people and show those kids pretending to have a seizure on the playground why it’s insensitive and aids in the mindframe that disabilities are nothing more than a joke. My experience growing up is part of what makes me, me, and sharing it is only the first step in forming a more understanding community.



Epilepsy With Psychogenic Nonepileptic Seizures Shows Higher Suicide Risk

Epilepsy With Psychogenic Nonepileptic Seizures Shows Higher Suicide Risk

The presence of concurrent psychogenic nonepileptic seizures increased the odds of hospitalization for first suicide by 152% compared with epilepsy alone.

Retrospective data from the UK’s largest tertiary mental health provider showed that a concurrent diagnosis of epilepsy with psychogenic nonepileptic seizures (PNES) or PNES alone had significantly increased odds of hospitalization due to suicide attempts than those with epilepsy alone.

Among a cohort of 2460 people with a primary or secondary diagnosis of epilepsy, PNES or concurrent epilepsy, and PNES from 2007 to 2021, 9% (n = 223) of participants had at least 1 suicide attempt-related hospital admission. At the conclusion of the analysis, the odds of people with concurrent diagnosis to have a first suicide attempt-related admission were 2.52 times those of patients with epilepsy alone.

Led by Irene Faiman, Bsc, PhD student, Kings College London, the findings have “direct implications for the clinical management of suicide risk in people with epilepsy,” the study authors wrote. “It is essential to investigate cases where there is a suspicion for coexisting seizure types, as a concurrent diagnosis of epilepsy and PNES is associated with a different risk profile and a significantly increased risk of hospitalization due to suicide attempt. People with concurrent diagnosis of epilepsy and PNES are a high-risk category that should be target of enhanced risk monitoring and preventive psychosocial interventions.”

Existing literature suggests that the risk of suicide among individuals with epilepsy is 2.6 to 5 times greater than the general population, with rates of suicide attempts also reported to be elevated among people with epilepsy. Work by Nightscales et al suggest that those with PNES have a standardized mortality ratio 2.5 times higher than the general population—a rate comparable to drug-resistant epilepsy. In that same 2020 assessment, 20% of the deaths in the study population were suicide.

To the best of the Faiman et al’s knowledge, theirs was the first study quantifying the risk of attempting suicide associated to a lifetime diagnosis of concurrent epilepsy and PNES, as compared with epilepsy alone and PNES alone. Suicide attempts were defined under International Classification Disease-10 codes X60 to X84, with only data extracted on the first presentation of suicide attempt. To minimize the influence of comorbid structural brain disease, the study excluded those with a primary or secondary diagnosis of cerebral malignancy, traumatic brain injury, dementia, or progressive neurodegenerative disease.

Of the 163 deaths recorded in the study, 2 (1.23%) were by suicide, including 1 in both the epilepsy group (0.85%; n = 118) and 1 in the PNES group (2.63%; n = 38). No estimate was provided for the group of people with concurrent diagnosis of epilepsy and PNES because of low numbers (0 deaths by suicide in 7 deaths). Using Firth Bias-Reduced logistic regression analysis, investigators found a significant change in odds of being admitted for suicide attempt between people with epilepsy alone and those with concurrent diagnosis, while the odds for people with PNES alone and those with concurrent diagnosis were comparable.

When comparing epilepsy alone and PNES alone, a post-hoc analysis revealed significant chances in the odds of being admitted for suicide attempt. In other words, the odds of people with PNES alone to have a first admission for suicide attempt were 1.93 times the odds of those with epilepsy alone.

In total, 2% of the cohort had registered a suicide attempt while on antidepressants compared with 17.4% of those without a prescription. “It should be noted that due to the time-locked nature of this [natural language processing] variable, for people with a suicide attempt the absence of a prescription either indicates that antidepressants were not prescribed, or that a medication review was not performed in our center in the year preceding the attempt,” Faiman et al wrote.


Source:, Marco Meglio

Identifying Pure Sleep Epilepsy After a First-Ever Seizure From Sleep

Identifying Pure Sleep Epilepsy After a First-Ever Seizure From Sleep

After a first-ever seizure from sleep, most patients will have another seizure. Two-thirds will develop pure sleep epilepsy, which impacts driving eligibility.

Pure sleep epilepsy is traditionally defined as an “established pattern of seizures purely from sleep.” This retrospective and qualitative definition is difficult to apply in clinical practice and to use when developing guidelines for important daily activities such as driving. Patients who have had a first-ever unprovoked seizure from sleep often have questions about their risk for seizure recurrence, particularly from wakefulness, and driving implications. Therefore, there is a clinical need to determine the risk for seizure recurrence in this population, including developing an evidence-based definition of pure sleep epilepsy.

For a study published in Neurology, my colleagues and I assessed the rate of seizure recurrence from sleep and wakefulness after a first-ever seizure from sleep, and a more specific definition of pure sleep epilepsy was proposed. Consecutive adult patients after a first-ever unprovoked seizure from sleep were recruited over 11 years. After baseline seizure workup, patients were prospectively followed to determine seizure recurrence from sleep and wakefulness and outcomes were correlated with potential clinical predictors of awake seizures.

Risk of Awake Seizure After a Sleep Seizure

Of the 239 patients with a first-ever seizure from sleep, 174 (73%) had seizure recurrence. Most patients had their second (75%) and third (81%) consecutive seizures from sleep. In addition, 89 patients (37%) developed awake seizures, with half occurring within 2 years of the initial seizure. The probability of an awake seizure within 1 year of a first-ever seizure from sleep was 13.9%, falling to 2.0% to 5.3% per year after 3 years. Additionally, the risk for awake seizures after three or more consecutive seizures from sleep was 8.7% within the first year of the third seizure, with the annual risk falling to below 5% in subsequent years.

Predictors for awake seizures after a first-ever sleep seizure on multivariate analysis were a positive family history of epilepsy (P=0.01) and EEG epileptiform abnormalities, particularly generalized epileptiform abnormalities (P=0.03). However, neither were sufficiently discriminative to have significant clinical implications.

Defining Pure Sleep Epilepsy: Implications for Clinical Practice and Driving

The key take-home point from this study is that most patients have seizure recurrence after a first unprovoked seizure from sleep, with many continuing to have sleep-only seizures (ie, pure sleep epilepsy). However, approximately one-third of patients with a first-ever seizure from sleep develop awake seizures, with half of these occurring as their second-ever seizure. For the majority of the others who eventually had an awake seizure, this occurred within three years of the initial seizure. Therefore, pure sleep epilepsy can be defined as 3 consecutive seizures from sleep or 3 consecutive years of sleep-only seizures with no previous awake seizures. This definition allows clinicians to prospectively diagnose pure sleep epilepsy with greater confidence.

These findings have implications for driving. Many jurisdictions around the world permit patients with pure sleep epilepsy to drive a private motor vehicle, with the stipulated period of seizures only during sleep ranging from 1-3 years. As no patient with epilepsy is ever truly free of the risk for future awake seizures, driving authorities and the community at large accept a certain risk of seizure-related accidents to allow patients to return to the road. A relative risk of a crash of less than or equal to two, equating to an annual awake seizure risk of less than 20%, is commonly deemed acceptable in driving guidelines, which is equivalent to driving when sleep-deprived or within legal alcohol limits. Based on this relative risk, the results of our study provide support for allowing patients to return to driving a private motor vehicle after 12 months of sleep-only seizures with no previous awake seizures. These findings may inform driving decisions and allow driving authorities to develop evidence-based driving guidelines for patients with pure sleep epilepsy.


Source:, Elaine Pang

CBD Transdermal Gel Provides Positive Results In Seizure Control

CBD Transdermal Gel Provides Positive Results In Seizure Control

A “world-first” Australian/New Zealand trial of transdermal CBD gel in adults with focal epilepsy has seen the majority of patients experience a reduction in seizures.

Focal epilepsy is a condition in which the main symptom is recurring seizures that affect one half of the brain. It’s the most common form of epilepsy in adults, and in one-third of these patients the condition is treatment-resistant.

A Phase 2A trial led by Monash University’s Professor Terry O’Brien examined the safety of transdermal cannabidiol (CBD) gel in adults with focal epilepsy. The trial was run at 14 epilepsy trial centres in Australia and New Zealand with 188 patients aged 18 to 70 years.

Some of those patients received one of two CBD oil treatments (195-mg and 390-mg cannabidiol), the others a placebo gel. In the first 12 weeks of the trial – the double-blind treatment period – there wasn’t a significant difference in seizures between the groups. However,  there was a reduction in seizures of at least 50% in more than half of the patients by month 6 in an open-label extension study.

Importantly, results from the trial indicated the gel was well-tolerated.

“This trial represents an internationally significant, landmark trial, to build an evidence base to support the availability and use of medicinal cannabis based treatments for adults with common forms of epilepsy,” said Professor O’Brien.

Further information on the trial and results have been published in the Journal of the American Medical Association (JAMA Open).

“Although the active treatment groups did not separate from placebo during blinded treatment, long-term seizure rates in cannabidiol-treated participants were reduced compared with what may be expected in a population of adults with focal seizures,” states the study conclusion. “As a result, additional randomized, well-controlled clinical trials using higher doses of transdermal cannabidiol in this patient population appear to be warranted.”

Professor O’Brien is Director of the Monash University Department of Neuroscience and described the trial as the  first randomised, double blind, placebo-controlled trial of a cannabidiol in this group of patients.


Source:, Terry Lassitenaz

During sleep the brain’s reaction to sound remains strong but one critical feature of conscious attention disappears

During sleep the brain’s reaction to sound remains strong but one critical feature of conscious attention disappears

Sleep provides a major key to the mystery of consciousness

A new discovery from Tel Aviv University may provide a key to a great scientific enigma: How does the awake brain transform sensory input into a conscious experience? The groundbreaking study relied on data collected from electrodes implanted, for medical purposes, deep in the human brain.  The information was utilized to examine differences between the response of the cerebral cortex to sounds in sleep vs. wakefulness, at a resolution of single neurons.

The researchers were surprised to discover that the brain’s response to sound remains powerful during sleep in all parameters but one: the level of alpha-beta waves associated with attention to the auditory input and related expectations. This means that during sleep, the brain analyzes the auditory input but is unable to focus on the sound or identify it, and therefore no conscious awareness ensues.

The study was led by Dr. Hanna Hayat and with major contribution from Dr. Amit Marmelshtein, at the lab of Prof. Yuval Nir from the School of Medicine, the Sagol School of Neuroscience, and the Department of Biomedical Engineering, and co-supervised by Prof. Itzhak Fried from the UCLA Medical Center. Other participants included: Dr. Aaron Krom and Dr. Yaniv Sela from Prof. Nir’s group, and Dr. Ido Strauss and Dr. Firas Fahoum from the Tel Aviv Sourasky Medical Center (Ichilov). The paper was published in the prestigious journal Nature Neuroscience.

Prof. Nir: “This study is unique in that it builds upon rare data from electrodes implanted deep inside the human brain, enabling high-resolution monitoring, down to the level of individual neurons, of the brain’s electrical activity. For understandable reasons, electrodes cannot be implanted in the brain of living humans just for the sake of scientific research. But in this study, we were able to utilize a special medical procedure in which electrodes were implanted in the brains of epilepsy patients, monitoring activity in different parts of their brain for purposes of diagnosis and treatment. The patients volunteered to help examine the brain’s response to auditory stimulation in wakefulness vs. sleep. “

The researchers placed speakers emitting various sounds at the patients’ bedside and compared data from the implanted electrodes – neural activity and electrical waves in different areas of the brain – during wakefulness vs. various stages of sleep. Altogether, the team collected data from over 700 neurons, about 50 neurons in each patient, over the course of 8 years.

Dr. Hayat: “After sounds are received in the ear, the signals are relayed from one station to the next within the brain. Until recently it was believed that during sleep these signals decay rapidly once they reach the cerebral cortex.  But looking at the data from the electrodes, we were surprised to discover that the brain’s response during sleep was much stronger and richer than we had expected. Moreover, this powerful response spread to many regions of the cerebral cortex.  The strength of brain response during sleep was similar to the response observed during wakefulness, in all but one specific feature, where a dramatic difference was recorded:  the level of activity of alpha-beta waves.”

The researchers explain that alpha-beta waves (10-30Hz) are linked to processes of attention and expectation that are controlled by feedback from higher regions in the brain. As signals travel ‘bottom-up’ from the sensory organs to higher regions, a ‘top-down’ motion also occurs: the higher regions, relying on prior information that had accumulated in the brain, act as a guide, sending down signals to instruct the sensory regions as to which input to focus on, which should be ignored, etc. Thus, for example, when a certain sound is received in the ear, the higher regions can tell whether it is new or familiar, and whether it deserves attention or not.  This kind of brain activity is manifested in the suppression of alpha-beta waves, and indeed, previous studies have shown a high level of these waves in states of rest and anesthesia. According to the current study, the strength of alpha-beta waves is the main difference between the brain’s response to auditory inputs in states of wakefulness vs. sleep.

Prof Nir summarizes: “Our findings have wide implications beyond this specific experiment. First, they provide an important key to an ancient, fascinating enigma: What is the secret of consciousness? What is the ‘X-factor’, the brain activity that is unique to consciousness, allowing us to be aware of things happening around us when we are awake, and disappearing when we sleep? In this study we discovered a new lead, and in future research we intend to further explore the mechanisms responsible for this difference.

“In addition, having identified a specific brain feature that is different between states of consciousness and unconsciousness, we now have a distinct quantitative measure – the first of its kind – for assessing an individual’s awareness of incoming sounds. We hope that in the future, with improved techniques for measuring alpha-beta brain waves, and non-invasive monitoring methods such as EEG, it will be possible to accurately assess a person’s state of consciousness in various situations: verifying that patients remain unconscious throughout a surgical procedure, monitoring the awareness of people with dementia, or determining whether an allegedly comatose individual, unable to communicate, is truly unaware of his/her surroundings.  In such cases, low levels of alpha-beta waves in response to sound could suggest that a person considered unconscious may in fact perceive and understand the words being said around him. We hope that our findings will serve as a basis for developing effective new methods for measuring the level of awareness of individuals who are supposedly in various states of unconsciousness. “


Source:, Noga Shahar

Alcohol, drugs and epilepsy

Alcohol, drugs and epilepsy

Whether to drink alcohol or take recreational drugs is a personal choice, but it is worth knowing the possible effects they could have on your epilepsy. Alcohol or recreational drugs can cause epilepsy in some people.

Alcohol and epilepsy

Alcohol is a common trigger for seizures, especially in the hangover period when your brain is dehydrated. It also disrupts sleep patterns which can be a common trigger for seizures. Alcohol can make epilepsy medication less effective or make the side effects of medication worse. The patient information leaflet that comes with your AEDs may say whether you can drink alcohol with that AED. However, the effect alcohol has on your seizures is individual.

Drugs and epilepsy

Recreational drugs can trigger seizures or increase the frequency of seizures for some people, and can also interact with medication. Taking recreational drugs increases the risk of seizures and of mental and physical health problems, which in turn make seizures more likely. Learning more about your own epilepsy and treatment means you can make informed choices about your lifestyle.​



Former TV news anchor is now seizure-free and back in Madison

Former TV news anchor is now seizure-free and back in Madison

After an on-air seizure went viral and epilepsy threatened her career, Sarah Carlson moved. Now she’s back and seizure-free, thanks to new medicine.

Across a decade starting in 2001, Sarah Carlson anchored newscasts at three Madison television stations.

Carlson thinks she may be the only journalist to have done that — anchored at three different stations. Whether that’s true, there’s another designation that is surely hers alone.

Carlson had epileptic seizures while on the air at two of them.

The second of the seizures, in January 2011, was the less severe of the two but nevertheless went viral when posted on YouTube. The seizures eventually led to Carlson’s doctor insisting she leave TV news with its stress and, especially, erratic hours — consistent sleep is important for people with epilepsy.

What followed was a move to the Chicago area, where Carlson is originally from and where her parents still live. She worked various jobs. She fell in love. Yet, the seizures continued. She lived her life — even ran marathons — but Carlson began to believe she was among those epilepsy patients who are never completely free of seizures.

Then, in summer 2020, her physician in Chicago, Dr. Michael Smith with the Rush University Medical Center, told her about a promising new medication called XCopri.

“I started the XCopri,” she says, “and it was weeks later that my seizures stopped. It gives me the chills to talk about it.” Next month, Carlson will mark two years seizure-free. Her longest time without seizures while she was in Chicago?

“I think it was three weeks,” she says. “No one thought this was going to happen, even though we tried to be hopeful. Deep down the people who love me and I never thought we’d be having this conversation.”

In spring 2021, Carlson and her fiancé, John Misasi, moved to Madison, where she shares custody with her ex-husband of her son and daughter, who are students at Middleton High School. “I realized how much I missed Madison,” she says. She first came to the city in 1994 for college, studying journalism at the University of Wisconsin–Madison and interning at WKOW-TV (Channel 27) while in school. After college, Carlson worked at a station in La Crosse and one in Minnesota before returning to WKOW-TV, anchoring first in the morning, then evening.

She left TV news in 2004 to start a media relations job with St. Mary’s Hospital, just in time to receive the onslaught of attention when a missing college student named Audrey Seiler ended up in the St. Mary’s emergency room. Producers offered to fly Carlson to New York. Larry King left her a voice mail.

But she missed doing news. In November 2006, Carlson returned to TV as an anchor on the NBC-15 morning show. It was three years later — November 2009 — that Carlson collapsed against her co-anchor, Christine Bellport, while Bellport was reading a story. It was a grand mal seizure. Carlson’s recollection of that episode begins later, waking up in an ambulance. Doctors finally discovered a kidney bean-sized tumor in her brain, and in September 2010 she had successful surgery to remove it. “It was not cancerous,” Carlson says. “I was like, ‘Great, move on, life is fine.’”

In January 2011, she began anchoring the 10 p.m. news on WISC-TV News 3 Now. That month she suffered a second seizure while on the anchor desk — filling in at 6 p.m. — with Susan Siman. “I learned,” Carlson says, “that the scar tissue where the tumor sat causes trouble, too.”

Carlson stayed with News 3 Now and went back on the air for a time. Still, she was anxious. “The seizures were worsening and I was stressed out about it happening again.” On her doctor’s advice, she stepped away. “It broke my heart,” she says. “But I thought I could do something like I did at St. Mary’s.”

She could find nothing. “Looking back, I think there’s a stigma there that played a role,” Carlson says. “No employer would admit it, but I’d just had that seizure that went viral. Who would want to hire me?”

She moved to the Chicago area in 2013. There were difficult stretches, jobs that didn’t work out, the loss of her driver’s license because of her seizures. They were trying different treatments. Her doctor advised her to go on disability. “Medication for epilepsy is strong and the side effects can be brutal,” Carlson says. She got through. “I thought I’d do what I had to do,” she says. “I was grateful for the doctors I had. For my parents and John. The support I had was phenomenal.” The breakthrough in 2020, the move back to Madison, being with her kids — Carlson is in a good place.

“I’m looking for work again,” she says. “It’s a new thing. Everyone who loves me said, ‘Give yourself a year. If you still really want to, then start trying.’” Any interest in TV news? “I don’t think so,” she says. “Nor do I know if I’d be invited to.”

She’d like to find something else that utilizes her talent for writing, talking to people, listening to their stories. “I used to think, ‘I’ll move back to Madison and do everything I can [to get back on TV],’” Carlson says. Now she doesn’t want to get up at 3 a.m., or read the last story at 10:30 p.m. “I’ve changed,” she says.


Source:, Doug Moe

Doctors with Texas Comprehensive Epilepsy Program lead 22-year-old Tyler resident to seizure freedom

Doctors with Texas Comprehensive Epilepsy Program lead 22-year-old Tyler resident to seizure freedom

Elisabeth Gentry, 22 and seizure-free, is now driving, working as a full-time nanny, and living independently after her treatment and surgery at UTHealth Houston.

Elisabeth Gentry had experienced auras ever since she was a toddler, but she didn’t learn that the occasional strange tastes in her mouth and feelings of impending doom were epilepsy until 2015, when she was 15 years old and suffered a grand mal seizure.

Regardless, the Tyler native went on to teach yoga, continue singing, and live life normally. She later enrolled at Belmont University, pursuing a degree in music business. However, the seizures worsened and became much more frequent, disrupting Gentry’s everyday life.

“I was having at least one seizure a day every day. They’d last about 45 seconds, I’d drool, and then I’d fall asleep immediately afterward,” said Gentry, now 22. “It got so bad that I decided to drop out of Belmont and stay near my family.”

Gentry visited multiple neurologists who prescribed her different medications in varying doses, but nothing was working. One physician even told her she’d just be epileptic her whole life, which was a tough pill for Gentry to swallow.

But her father wouldn’t take no for an answer. He scoured the internet for epilepsy care and came across the Texas Comprehensive Epilepsy Program, a collaboration between UTHealth Houston and Memorial Hermann-Texas Medical Center. Designated by the National Association of Epilepsy Centers as a Level 4 program, the highest such distinction, the center’s epilepsy surgery program is among the busiest in the U.S., according to its website.

Shortly after contacting the program, Gentry saw director Samden Lhatoo, MD, neurologist, professor, and John P. and Kathrine G. McGovern Distinguished Chair in the Department of Neurology with McGovern Medical School at UTHealth Houston, who diagnosed Gentry with mesial temporal lobe epilepsy following an epilepsy monitoring unit (EMU) evaluation.

Characterized by seizures beginning in a structure of the brain called the hippocampus or its surrounding area, it is the most common form of focal epilepsy (in which recurring seizures affect one half of the brain), accounting for almost 80% of all temporal lobe seizures.

Lhatoo found abnormal scarring in the hippocampus of Gentry’s brain, explaining the likely cause of her epilepsy. The EMU evaluation confirmed the seizures were probably coming from this scarring or from very close by. It also meant Gentry would presumably benefit from surgery, Lhatoo said.

“The approach is to be minimally invasive so that you’re less likely to disturb the brain structures that are not involved in the seizure genesis,” Lhatoo said. “It’s a myth that we only use 10% of our brain – we use all of it, so the idea is to not damage any part of the brain that doesn’t need to be, especially the areas that control cognition, language and memory.”

Lhatoo referred Gentry to Nitin Tandon, MD, professor and chair ad interim of the Vivian L. Smith Department of Neurosurgery at McGovern Medical School and co-director, as well as director of epilepsy surgery, at UTHealth Houston Neurosciences.

Tandon determined Gentry was a viable candidate for the nationwide Stereotactic Laser Ablation for Temporal Lobe Epilepsy (SLATE) trial, which is evaluating the safety and efficacy of a Medtronic-funded device in performing laser ablations in adults with drug-resistant mesial temporal lobe epilepsy. Led locally by Tandon, the study is still recruiting patients at UTHealth Houston.

In August 2020, Gentry underwent a laser ablation surgery of her hippocampus. This partly resolved her issue, but not completely, which led, in January 2022, to stereoelectroencephalography (SEEG) – a minimally invasive procedure in which Tandon placed electrodes in Gentry’s brain to identify the areas where her epileptic seizures were originating – and found that they were coming from her amygdala, a brain structure right next to the hippocampus.

“The amygdala is the emotion nucleus of the brain, where you experience fear, anger, and, to some extent, pleasure. It’s also tied to memory,” said Tandon, who is also the Nancy, Clive and Pierce Runnells Distinguished Chair in Neuroscience of the Vivian L. Smith Center for Neurologic Research. “Elisabeth’s case is a good example of what we do in these slightly more complex cases. Increasingly, laser ablation is becoming one of the most common approaches to this type of epilepsy. Our center is a world leader in epilepsy care, and we have a host of new technologies to address the various causes of epilepsy.”

In February 2022, Gentry underwent a laser ablation of her amygdala. Since the second surgery, she’s been seizure-free.

“One should not tolerate ongoing seizures as a fact of life,” said Lhatoo, who plans to reduce Gentry’s medication starting February 2023. “Patients need a comprehensive, modern-day assessment of their seizures at a Level 4 center because a lot of the time, we can find the causes or locations of the seizures, which can be dealt with via minimally invasive surgery that can lead to the prospect of long-term seizure freedom and total cessation of medication.”

Perhaps no one appreciates that more than Gentry, who is now able to drive and is working as a full-time nanny and renting a house, where she lives with her golden retriever, two cats, and pet turtle.

“I would give my life to these doctors because they literally saved my life,” Gentry said. “I’ve forgotten what it’s like to have seizures, thanks to these brilliant people. Never give up hope, because there is a light at the end of the tunnel.”



Paleo vs Keto diet: which is better for longevity?

Paleo vs Keto diet: which is better for longevity?

Healthy living calls for healthy habits, and following a nutritional diet is one essential element that you should consider. In Paleo vs Keto, which one is more suitable for longevity?

What is the keto diet?

The ketogenic diet consists of a low-carb and high-fat diet that drastically reduces carbohydrate intake and replaces it with fat. This decrease in carbs sets your body into a metabolic state called ketosis.

When this occurs, your body becomes highly efficient at burning fat and converting it into energy. Also, it transforms fat into ketones (in the liver) and supply power to the brain.

Ketogenic diets can provoke significant declines in blood sugar and insulin levels. This effect, along with the raised ketones, carries some health benefits.

What is the paleo diet?

On the other hand, paleo is a diet based on foods presumed to have been consumed by early humans, consisting mainly of meat, fish, vegetables, and fruit, but excluding dairy or grain products and processed food.

Pros and cons of Paleo and Keto diets

The keto diet has a scientific background, though not specifically for weight loss. Some evidence has found that a keto diet can be effective for patients with epilepsy. The Epilepsy Foundation encourages the ketogenic diet to manage seizures and is usually recommended for children who fail to respond to prescription remedies.

Unlike keto, paleo has gained popularity because of its back-to-basics technique. It concentrates on raising the intake of whole foods, all fruits and vegetables, lean proteins, and healthy fats while reducing processed foods, sugar and salt.

Paleo proponents assert that it can:

  • Stabilise blood sugar
  • Help with weight loss
  • Increase energy
  • Reduce inflammation
  • Reduce the risk of chronic diseases

Still, some in the scientific field do not agree with all of these assertions. It is still undecided if the paleo diet can have long-term benefits for people with type 2 diabetes. According to the American Journal of Clinical Nutrition, this dietary plan overall “still lacks evidence.”

As with keto, there are health advocates who do not favour removing grains, dairy and legumes from the diet. Legumes, for example, are indeed one of the most nutritious foods you can eat.

Similarities and differences between Paleo and Keto diets

Although both distinct, paleo and keto share many characteristics:

  • Emphasis on whole foods: both diets intend to lean on whole-food sources of nutrients. Whole food is food that has experienced minimal processing by the time it gets to your plate. Both firmly promote eliminating all ultra-processed foods and substituting them with whole foods like nuts, fish, fresh vegetables, and meat.
  • Emphasis on healthy fats: paleo and keto diets prompt the intake of unrefined, healthy fats and suggest moderate-to-liberal amounts of selected refined oils (like avocado and olive) as well as nuts, seeds and fish. These foods aid heart health because of their poly and monounsaturated fat content.
  • Eliminating grains and legumes: paleo and keto firmly discourage consuming grains and legumes. According to the paleo diet, this elimination is basing on the fact that grains and legumes were presumably not part of early human diets and contain antinutrients. Antinutrients are compounds like lectins and phytates found in some plant-based foods. They interrupt your body’s ability to absorb minerals and nutrients, which may cause digestive distress when eaten in large quantities.
  • Eliminating added sugar: keto and paleo diets strongly discourage the intake of added sugars. However, paleo dieters are laxer with this rule, as unrefined sugar origins like honey and maple syrup are still allowed. Keto doesn’t allow any added sugar sources, refined or not, because of the high carb content of these foods.
  • May be practical for weight loss: one of the direct reasons for the popularity of keto and paleo diets is the concept that they facilitate weight loss. Unfortunately, limited research is available on how sufficient these diets are for maintained, long-term weight loss. However, some short-term research is favourable, but ultimately, more studies are needed to specify a clear causal relationship.

For the differences between the two, here are several:

  • Paleo allows for whole-food carbs: although paleo restricts some carb sources, it isn’t necessarily a low-carb diet like keto. Paleo does not highlight macronutrients. Your diet could be very high in carbs, counting on which foods you choose to eat within the specified parameters. Contrarily, the keto diet prohibits all rich sources of carbohydrates (starchy vegetables, most fruits, grains, sweeteners and legumes).
  • Keto allows dairy and some soy foods: keto permits (even encourages) eating dairy foods like heavy cream, butter and unsweetened full-fat yogurt. Other dairy products, like milk or ice cream are not allowed on keto due to their low fat-to-carb ratio. Paleo does not allow any soy and almost all dairy.
  • Paleo focuses more on ideology, while keto concentrates on macronutrients: one of the critical distinctions between the paleo and keto diets is the ideological message or lack of it. Paleo emphasises lifestyle choices beyond just the diet, as it is particular. You’re allowed to eat as much protein, fat and carbohydrates as possible, provided you’ve chosen them from the list of ‘allowable’ foods.

Paleo and keto diet for longevity

Paleo accentuates consuming whole foods thought to be known to humans in the Paleolithic era. It also promotes exercise and other health practices. On the other hand, keto is a diet described as high in fat and very low carbohydrate content, and it may be effective for weight loss and blood sugar control.

Both diets have the prospect of impacting your health in a positive way when appropriately planned. Nevertheless, long-term research regarding the safety and effectiveness of these diet plans is lacking, and some of the limitations can be difficult to maintain.

For most, the paleo diet is a better option because it has more flexibility with food choices than keto, making it easier to maintain long-term. The diet that works long-term for you is the most suitable choice.


Source:, Ivy C