New Screening Tool Can Improve the Quality of Life for Epilepsy Patients with Sleep Apnea

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Rutgers researchers have developed a tool to help neurologists screen for obstructive sleep apnea in people with epilepsy whose seizures can be magnified by sleep disorders.

The study appears in the journal Neurology Clinical Practice.

Although detection and treatment of obstructive sleep apnea (OSA) can improve seizure control in some patients with epilepsy, providers have not regularly assessed patients for those risk factors. The researchers developed an electronic health record alert for neurologists to evaluate a patient’s need for a sleep study.

This study can determine the necessity for treatment, which can result in improved seizure control, reduction in antiepileptic medications and reduce the risk of sudden unexpected death in epilepsy.

OSA occurs when breathing is interrupted during sleep. The Epilepsy Foundation estimates that approximately 40 percent of people living with epilepsy have a higher prevalence of OSA that contributes to poor seizure control.

“Sleep disorders are common among people living with epilepsy and are under-diagnosed,” said lead author Martha A. Mulvey, a nurse practitioner at University Hospital’s department of neurosciences. “Sleep and epilepsy have a complex reciprocal relationship. Seizures can often be triggered by low oxygen levels that occur during OSA. Sleep deprivation and the interruption of sleep can therefore increase seizure frequency.”

The researchers developed an assessment for identifying OSA consisting of 12 recognized risk factors, which are embedded in the electronic health record. If a patient has at least two risk factors, they are referred for a sleep study. The risk factors include: body mass index greater than 30 kg/m2; snoring; choking or gasping in sleep; unexplained nighttime awakenings; morning headaches; dry mouth, sore throat or chest tightness upon awakening; undue nighttime urination; decreased memory and concentration; neck circumference greater than 17 inches; excessive daytime sleepiness; undersized or backward displacement of the jaw; and an assessment of the distance from the tongue base to the roof of the mouth.

“It was found that placing this mandatory alert for providers to screen for OSA in the EHR markedly increased the detection of at-risk epilepsy patients who should be referred for a sleep study,” said co-author Xue Ming, professor of neurology at Rutgers New Jersey Medical School. “Such screening can lead to early detection and treatment, which will improve the quality of life of patients with epilepsy and OSA.”

In cases that were reviewed prior to the alert being placed in the electronic health record, only seven percent with epilepsy were referred for sleep studies. Of those who were referred, 56 percent were diagnosed with sleep apnea. Of the 405 patients who were screened for OSA after the alert was placed in the electronic health record, 33 percent had at least two risk factors and were referred for a sleep study. Of the 82 patients who completed a sleep study, 87 percent showed at least mild sleep apnea.

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‘A mental blackout’: 17-year-old Ontario boy describes living with epilepsy

 As originally seen on globalnews.ca

Samuel Camilleri has been living with epilepsy for the past 10 years.

“I was seven years old and it sort of came to my parents at first cause they started to notice I was staring into space more often,” Samuel told Global News Sunday. “So I guess it tipped them off about something that was wrong.”

At first his seizures were very sedated, or what is referred to as absent seizures where he can be seen as unresponsive, as if he is staring off into space.

But since then, the seizures have changed.

Samuel suffers from clonic/grand mal seizures, complex partial seizures, simple partial and drop seizures.

Life can be very difficult and often frustrating for the Ontario family.

“It’s been really hard over the years.,” his mother Sara Camilleri told Global News.

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The seizures have made him very dependent on his family, and often frustrated he cannot participate in regular teenage activities like driving.

In fact, in order for Samuel to get his license he has to not have a seizure for around six months. But Samuel has seizures almost once a week.

They can be so severe, he is exhausted by the time it is over.

“It’s kind of like a mental blackout. You don’t remember everything that happens when you have a seizure,” Samuel said. “I have had people tell me my eyes look into the back of my head, sometimes spit comes out of my mouth – there’s a whole bunch of different things that go on.”

Sara said he can fall into an incredibly deep sleep where he does not even move because he is so exhausted.

“I have heard people describe a seizure, especially if it’s a large seizure like a tonic conic seizure, like running a marathon. Their heart is racing and they are really physically and mentally exhausted afterwards … it really puts your life on hold because you need to recover” she said.

The Camilleri family have been working together for the past 10 years to ensure they’re well educated and informed about Samuel’s condition. But they are doing more than just educating themselves. They are sharing Samuel’s story to help educate others about epilepsy, the different types, and what you can do to help.

According to the Canadian Epilepsy Alliance, around 260 thousand Canadians have epilepsy and the age range can be as young as an infant to someone over 65 years old.

The seizures can start at any point in a person’s lifetime and they can vary from mild to severe.

In Samuel’s case, his seizures escalated as he got older.

“With the introduction of a third medication, he is at about one major seizure a week, which means sometimes he might have two to three, or sometimes he might not have one,” Sara said. “It’s very unpredictable. You never know when it’s going to happen.”

Samuel was almost hit by a car twice, has fallen off his bike, and he almost drowned, but fortunately his family was close by to pull him to safety.

Sara advises that anyone who encounters someone having a seizure, the best thing to do is stay with them.

“Make sure they are safe,” she said. “If they are standing and it looks like they are going to fall, you intervene and help them gently get to the floor. If they are near a chair, help them into the chair … don’t do anything to their mouth. They are not going to swallow their tongue, they are not going to bite their tongue, they will be fine. Just be with them. Be a support and let them guide your response afterward … it’s really important to know the triggers.

Sara also warns to not restrain someone having a seizure, as it could cause injury to their arms and legs.

For Samuel, his focus is to finish high school and hopefully gain his independence as he works with his doctors and family to help control his seizures.

The Canadian Epilepsy Alliance has some tips on what you can do if you encounter someone having a seizure:

1) STAY CALM

  • Most often, a seizure will run its course and end naturally within a few minutes.

2) TIME IT

Call 911 if:

  • the seizure lasts more than 5 minutes
  • the seizure repeats without full recovery between seizures
  • the person is pregnant or has diabetes
  • the person is injured from the seizure
  • the seizure occurs in water
  • you are not sure if the person has epilepsy

3) PROTECT FROM INJURY

  • Move sharp objects away.
  • If the person falls to the ground, roll them on their side when it is safe to do so.
  • Place something soft under their head.
  • If the person wanders during their seizure, stay by their side and gently steer them away from danger.
  • When the seizure ends, provide reassurance and stay with the person if they are confused.

As originally seen on globalnews.ca

Absence Epilepsy Seizures Visualized in the Brain

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As originally seen in www.technologynetworks.com

At first, the teacher described her six-year-old student as absentminded, a daydreamer. The boy was having difficulty paying attention in class. As the teacher watched the boy closely, she realized that he was not daydreaming. He often blanked out for a few seconds and wouldn’t respond when she called his name. On occasion, he would blink a lot and his eyes would roll up.

The teacher talked to the boy’s parents about his concerning behavior. His parents took him to the doctor and, after a few tests, he was diagnosed with absence epilepsy and prescribed medication. Absence epilepsy is the most common type of seizure disorders in children.

“In about 80 percent of children with absence seizures, the episodes usually stop around puberty. The other 20 percent will continue to have seizures,” said first and corresponding  author Dr. Jochen Meyer, instructor of neurology and neuroscience at Baylor College of Medicine. “Absence seizures, even if they stop, are a disabling disorder because they cause children to be momentarily absent during periods of their formative years.”

“Many of these children also present with attention deficit disorder that can persist in about 40 percent of patients despite being treated with medication and even after the seizures stop,” said co-first author Dr. Atul Maheshwari, assistant professor of neurology and neuroscience at Baylor. “We need to have a better understanding of what happens in the brain during absence seizures.”

And that is what the researchers achieved in this study. They used a new technology called 2-photon microscopy that allowed them to visualize the firing activity of many individual neurons simultaneously in the brains of awake mice. They combined these observations with electroencephalograms that measured the electrical patterns of the same area of the brain. The results were completely unexpected.

‘It’s like listening to an orchestra without a conductor’

Researchers have known for decades that people having an absence seizure present with a typical electroencephalogram showing a spike-and-wave pattern of electrical activity that repeats for the duration of the seizure.

“The spike-and-wave pattern is very reproducible, and it’s during this period of time that the child would stop and stare. But nobody had studied what the brain cells themselves were doing during one of these episodes,” said co-author Dr. Jeffrey Noebels, professor of neurology, neuroscience, and molecular and human genetics and director of the Blue Bird Circle Developmental Neurogenetics Laboratory at Baylor.

The researchers took a closer look at the firing activity of neurons in an area of the visual cortex of a genetic mouse model of absence epilepsy. They used the new 2-photon microscopy technology to see the firing activity of many brain cells at the same time, in a way similar to people using Google maps to zoom in to look at a group of individual houses in a neighborhood.

“We had predicted from the spike-and-wave pattern of the brain waves that the behavior of the brain cells during a seizure also would be a rhythmical activity. Instead, we saw an uncoordinated firing activity, which was a big surprise,” said Noebels, who also holds the Cullen Endowed Chair in Neurogenetics. “It was always thought that during the ‘spike’ cells would fire, and during the ‘wave’ they would be quiet. That repeated pattern of spike-and-wave is the signature of this kind of epilepsy, so we assumed that it was based on the behavior of the cells that were generating the brain waves. But in fact we found that there appears to be no uniform connection between the cell behavior and the brain waves.”

“Normally the human brain, like an orchestra, is playing beautiful music and every player can understand what the others are playing. We thought that when a seizure started, the ‘orchestra of neurons’ would play extremely loud and intense music. And when the seizure ended, the neurons would go back to playing monotonous music,” Maheshwari said. “Instead, we found that during an absence seizure the volume of the music went down and the ‘musicians’ were playing music without coordinating with others. Most of them were not playing at all, as if the conductor was not there anymore. When the seizure ended, it was like the conductor had returned and organized the musicians to play harmoniously again.”

Interestingly, the reduction in brain cell activity began several seconds before the rhythmic spike-and-wave signature in the electroencephalogram started.

“It might be of interest in the future to further investigate whether the reduction in cellular activity that precedes the seizures could be used to predict them,” Meyer said.

The researchers’ contribution to the field of epilepsy has opened a window into the cellular events that occur in the brain during absence seizures.

“Now that we know that the ‘orchestra’ is disorganized, we can look for ways to treat the underlying causes of the seizures at the cellular level,” Maheshwari said.

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As originally seen in www.technologynetworks.com

Research Update -Tests required before your child’s epilepsy surgery

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As originally seen in eplink.ca

For a child who is having epilepsy surgery, several tests may need to be done as part of the clinical assessment. EpLink researcher Dr. Elysa Widjaja and senior neurodiagnostic technologist Rohit Sharma have put together an information booklet to help parents navigate the different tests that may be required before surgery. Some of these are routine and non-invasive, such as electroencephalography (EEG). Other tests may require injecting dyes into the blood in order to see different areas of the brain more clearly. This booklet offers tips and information on how to prepare for things like a stay in the epilepsy monitoring unit (EMU), and describes the possible risks of each test.

If you’re feeling overwhelmed by the number of tests, this booklet explains why each test is done and what doctors hope to find. For example, a regular MRI (magnetic resonance image) takes pictures of your child’s brain, while a functional MRI shows which parts of the brain are responsible for things like speaking or moving. Some of these tests are designed to identify the area in the brain where seizures are starting. Others try to locate the precise areas responsible for important functions like vision, sensation and hearing so that they can be avoided during surgery. Some tests need to be done while your child is having a seizure, and others are done in the time between seizures.

In addition, some cognitive tests will be done to learn more about how your child thinks. These tests help to determine if surgery may put your child at risk for language and memory problems. Your team will use these tests to measure things like intelligence, working memory, vocabulary, problem-solving, processing speed, and emotions and personality.

All of these tests aim to make your child’s epilepsy surgery as successful as possible. Click here to see the booklet.

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As originally seen in eplink.ca

Colleagues dive in to help with fundraiser

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As originally seen in www.orilliamatters.com

When Corey Henderson takes his leap of faith next month, he won’t be jumping alone.

The Orillia man’s Skydiving for Epilepsy fundraiser caught the attention of his colleagues at Shoppers Drug Mart on Westmount Drive. Instead of one person jumping from a plane in August, there will be at least 10.

“I’m overwhelmed and surprised that people want to jump with me,” Henderson said. “I have the best work family.”

He organized the fundraiser in memory of his wife, Catherine, who died in 2015, at age 37, of complications from having an epileptic seizure.

Terri Knicely wanted to help her co-worker, so she rallied the troops and Shoppers.

“My main reason was Corey. He’s become a really good friend of mine,” she said.

It’s no small undertaking for Knicely and Henderson, both of whom suffer from anxiety and have a fear of heights.

“I’m petrified,” Knicely admitted.

She’s not the only one.

“I’m terrified of heights,” said co-worker Virginia Bramer, who will also skydive. “I won’t even go on the big rides at Canada’s Wonderland.”

But, because she was soliciting donations for the fundraiser, she felt she should go all in.

“If I’m asking people to give money to the cause, I should be taking part in it,” she said.

Colleague Theresa Cox admitted she, too, is “getting really terrified” in the lead-up to the event, “but it’s something I’ve always wanted to do and I get to support a friend.”

It’s more than simply supporting a friend, though. It’s also about raising money for Epilepsy Canada and raising awareness about a disorder “a lot of people really don’t know about,” Cox said.

“You just don’t hear about epilepsy as much as you do about other diseases,” Bramer added.

While the number of skydivers has gone from one to 10, the sky’s the limit. Anyone is invited to join in and jump out during the fundraiser, which will take place Aug. 11 at Skydive Toronto in Cookstown. Those taking part must pay the associated costs of the skydive, but Skydive Toronto will donate $50 from each jump to Epilepsy Canada.

For those who don’t want to skydive, there are other ways to help. Henderson and his colleagues will be at the Downtown Orillia Summer Block Party on July 28 to raise money and awareness. They will also have a raffle, with prizes including box-seat tickets to a Toronto Argonauts game.

People are also welcome to attend the Aug. 11 event, even if they’re not jumping. There will be activities for kids on site, and Henderson’s three young children will be selling Kool-Aid for donations.

A $10,000 fundraising goal has been set. Donations, and registration information to take part in the event, can be made here. Knicely also started a GoFundMe page that can be found here.

While the money is appreciated, Henderson also wants to shed light on epilepsy and the effects it can have on those who have the disorder, and their families.

“If we can make (Epilepsy Canada) famous even for 15 minutes, I’ll be happy with that,” he said.

Keep up with the fundraising efforts on the Skydiving for Epilepsy Facebook page.

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As originally seen in www.orilliamatters.com