The Power of Language

The Power of Language

The sympathy, empathy, and pure common sense of considering the intent and effect of the terms we use.

COMMENTARY

A little blind girl, because she could not see him, wrote Mister Rogers and asked him to say—to speak the words—that he is feeding the goldfish. For each episode after that, he spoke the words. It only took 1 letter. I do not think Mister Rogers acted out of sympathy or empathy, but out of sheer common sense.

A reporter for The Jerusalem Post wrote there is a stigma to epilepsy. I sent her this anecdote from my past: I am in a pre-teaching workshop at college, and we are being told what to do, should a student experience a seizure. We were not being alienated by word, but being instructed how to help. She never again directed that term—I believe, again, not out of sympathy or empathy, but out of sheer common sense. It makes sense to educate where you can.

The constituents of the Association for Retarded Citizens approached its administrators and asked them to change its name, as they did not like being called “retarded.” The organization changed its name to The Arc of the United States, I believe out of sympathy, empathy, and pure common sense. They had simply not considered the effect of the language in their name.

We often do not consider the effect of our language. Mister Rogers heard, the reporter for The Jerusalem Post heard, and the administrators of The Arc heard, but we do not all hear. We find ourselves acclimated to language long a part of our past, bringing this language into our present and into the future. It is not our intention to hurt or harm anyone—we have simply become so accustomed to particular words that we employ them without giving thought to their intent.

Words themselves have intent. Word is deed. We have the power to fashion our language to intend good. Indeed, that should be our intent.

I watch with surprise the continuing use of the term, “stigma,” in the area of mental health. Like the term the constituents of The Arc responded to, this term is sufficiently alienating both to the public and to those at whom we direct it. It would be wise to do, as the administrators of The Arc did, and change our language out of empathy, sympathy, and plain common sense. We do not want to do harm to anyone.

A little girl who could not see asked Mister Rogers to speak out loud that he was feeding the goldfish, so she, not being able to see, could picture it alongside those of us gifted with sight. A reporter, recognizing she could educate rather than alienate, altered her approach. A group of administrators, listening to their constituents, changed the name of their organization out of sheer respect for the individuals they represented.

Can we do less for the individuals we represent? Have we not that same obligation, out of sympathy, empathy, and pure common sense?

Foremost out of sheer common sense.

 

Source: psychiatrictimes.com, Harold A. Maio

They Had Half Their Brains Removed. Here’s What Happened After

They Had Half Their Brains Removed. Here’s What Happened After

Many people think of their brain as an overstuffed attic. Every square-inch is either crammed with information or working overtime to help the body function properly. So is it even conceivable that a person be normal with just half a brain?

Yes, apparently it is, according to a new analysis that assessed brain health among six adults who had undergone a hemispherectomy as children. The highly invasive surgery, which entails removal or severing of half the brain, had been part of a pediatric epilepsy treatment to reduce seizure risk.

“The people with hemispherectomies that we studied were remarkably high-functioning,” study author Dorit Kliemann said in a statement. “They have intact language skills. When I put them in the [brain] scanner, we made small talk, just like the hundreds of other individuals I have scanned,” she explained.

“You can almost forget their condition when you meet them for the first time,” added Kliemann, who is a post-doctoral scholar in cognitive neuroscience at the California Institute of Technology, in Pasadena.

Kliemann and her team noted that the six patients in the study had all struggled with relentless epileptic seizures from a very early age, with one patient initially struck by seizures just minutes after birth.

Hemispherectomies are typically performed as a means to bring such “intractable” epilepsy under control, the team explained. The aim is to isolate whichever half (or hemisphere) of the brain is affected by the disease. That can mean either actual removal of the problematic half of the brain or a cutting off of all physical connections between the two halves.

All of the patients had undergone full removal of half their brain. The youngest patient was just 3 months old at the time of surgery, while the oldest had been 11. Four involved excision of the right side of the brain, while two had the left side removed.

Now in their 20s and 30s, the six patients agreed to undergo functional MRI brain scans while awake at the Caltech Brain Imaging Center.

Brain activity was tracked in areas tasked with regulating vision, movement, emotion and thought processes.

Results were then stacked up against those of six healthy adults who also underwent scans, and with data previously collected on nearly 1,500 healthy adults (average age of 22).

Because brain networks devoted to a single regulatory function often span both hemispheres of the brain, the team expected to see weaker neural activity among the hemispherectomy patients. That was not the case.

In fact, scans revealed normal in-network communication and activity function. And communication running between different regulatory networks was actually found to be stronger than normal among hemispherectomy patients.

The findings were published online Nov. 19 in the journal Cell Reports.

Dr. Joseph Sirven, a professor of neurology with the Mayo Clinic in Florida and editor-in-chief of Epilepsy.com, said the findings did not strike him as entirely surprising. He said he often sees patients functioning at a very high level post-hemispherectomy.

“But what surprises me is the degree of compensation that was noted,” added Sirven, who was not part of the study team.

“And if we could figure out the way that the brain compensates in this dramatic setting, and harness this compensatory mechanism for patients affected by stroke, traumatic brain injury or other conditions, that would be a very big deal,” noted Sirven, who is also a Fellow at the American Academy of Neurology.

That thought was echoed by Kliemann. “As remarkable as it is that there are individuals who can live with half a brain, sometimes a very small brain lesion — like a stroke or a traumatic brain injury or a tumor — can have devastating effects,” she noted.

That is why it’s so important to get a better understanding of exactly how the brains of hemispherectomy patients managed to reorganize and compensate for the loss of half a brain, Kliemann said. Because doing so could eventually lead to new “targeted intervention strategies” to help other types of patients struggling with the debilitating effects of a variety of brain injuries, she theorized.

Caltech’s Brain Imaging Center supplied this video showing MRI scans of the brain of one patient who underwent hemispherectomy. Scan “slices” from the top to the bottom of the brain are shown:

 

Source: consumer.healthday.com, Alan Mozes

What to know about brain atrophy

What to know about brain atrophy

Brain atrophy refers to a loss of brain cells or a loss in the number of connections between brain cells. People who experience brain atrophy typically develop poorer cognitive functioning as a result of this type of brain damage.

There are two main types of brain atrophy: focal atrophy, which occurs in specific brain regions, and generalized atrophy, which occurs across the brain.

Brain atrophy can occur as a result of the natural aging process. Other causes include injury, infections, and certain underlying medical conditions.

This article describes the symptoms and causes of brain atrophy. It also outlines the treatment options available in each case, as well as the outlook.

Symptoms

Brain atrophy can affect one or multiple regions of the brain.

The symptoms will vary depending on the location of the atrophy and its severity.

According to the National Institute of Neurological Conditions and Stroke, brain atrophy can cause the following symptoms and conditions:

Seizures

A seizure is a sudden, abnormal spike of electrical activity in the brain. There are two main types of seizure. One is the partial seizure, which affects just one part of the brain. The other is the generalized seizure, which affects both sides of the brain.

The symptoms of a seizure depend on which part of the brain it affects. Some people may not experience any noticeable symptoms, whereas others may experience one or more of the following:

  • behavioral changes
  • jerking eye movements
  • a bitter or metallic taste in the mouth
  • drooling or frothing at the mouth
  • teeth clenching
  • grunting and snorting
  • muscle spasms
  • convulsions
  • loss of consciousness

Aphasia

The term aphasia refers to a group of symptoms that affect a person’s ability to communicate. Some types of aphasia can affect a person’s ability to produce or understand speech. Others can affect a person’s ability to read or write.

According to the National Aphasia Association, there are eight different types of aphasia. The type of aphasia a person experiences depends on the part or parts of the brain that sustain damage.

Some cases of aphasia are relatively mild, whereas others may severely impair a person’s ability to communicate.

Dementia

Dementia is the term for a group of symptoms associated with a continuing decline in brain function. These symptoms may include:

  • memory loss
  • slowed thinking
  • language problems
  • problems with movement and coordination
  • poor judgment
  • mood disturbances
  • loss of empathy
  • hallucinations
  • difficulty carrying out daily activities

There are several different types of dementia. Alzheimer’s disease is the most common.

A person’s risk of dementia increases with age, with most cases affecting people aged 65 years and older. However, experts do not consider it to be a natural part of the aging process.

Causes

Brain atrophy can occur as a result of injury, either from a traumatic brain injury (TBI) or a stroke. It may also occur as a result of one of the following:

  • encephalitis
  • neurosyphilis
  • HIV

In some cases, brain atrophy may occur as a result of a chronic disorder or condition, such as:

  • cerebral palsy
  • multiple sclerosis (MS)
  • Huntington’s disease
  • frontotemporal dementia
  • Alzheimer’s disease
  • Pick’s disease
  • mitochondrial encephalomyopathies, which are a group of disorders that affect the nervous system
  • leukodystrophies, which are a group of rare genetic conditions affecting the nervous system

Diagnosis

When diagnosing brain atrophy, a doctor may begin by taking a full medical history and asking about a person’s symptoms. This may include asking questions about when the symptoms began and if there was an event that triggered them.

The doctor may also carry out language or memory tests, or other specific tests of brain function.

If they suspect that a person has brain atrophy, they will need to locate the brain damage and assess its severity. This will require an MRI or CT scan.

Treatment

The treatment options for brain atrophy will vary depending on its location, severity, and cause. The following sections list some treatment options by cause.

Injuries

Brain atrophy can occur as a long-term consequence of an injury. In these cases, treatment tends to focus on helping the surrounding brain issue heal over time.

Brain injuries typically require a rehabilitation period that may involve one or more of the following:

  • physical therapy
  • speech therapy
  • counseling

Infections

Medications will be necessary to treat infections that result in brain inflammation or atrophy.

Doctors prescribe antibiotics to treat bacterial infections and antiviral medications to treat viral infections. These medications will help fight the infection and alleviate the symptoms.

Disorders and conditions

Several disorders and conditions can lead to brain atrophy. Many of these conditions currently have no cure, so treatment generally focuses on managing the symptoms.

Treatment may involve a combination of medications and therapies such as occupational or speech therapy. These therapies may be necessary to help a person regain brain function or learn strategies to help them cope.

Some conditions, such as MS, cause symptoms to occur in cycles. A person’s doctor or healthcare team will adapt their treatment plan accordingly if this is the case.

Is it possible to reverse brain atrophy?

Until recently, many scientists considered the brain to be a relatively unchanging organ. However, research is increasingly showing how the brain adapts its structure and functioning throughout life.

It is currently unclear whether or not it is possible to reverse brain atrophy. However, the brain may alter how it works to compensate for damage. In some cases, this may be enough to restore functioning over time.

Exercise for brain atrophy

A 2011 review suggests that regular exercise could slow or even reverse brain atrophy related to aging or dementia.

However, one 2018 study found that high intensity exercise and strength training did not slow cognitive impairment in people with mild-to-moderate dementia. Additional research is therefore necessary to determine what effect, if any, exercise has on preventing or reversing brain atrophy due to dementia.

Drugs to reverse brain atrophy

Scientists are currently working to develop drugs that can reverse brain atrophy. For example, one 2019 study investigated whether or not the dementia drug donepezil could reverse alcohol-induced brain atrophy in rats.

The researchers found that the rats they treated with donepezil experienced a reduction in brain inflammation and showed an increased number of new brain cells. However, it was not clear if donepezil would have similar effects on brain atrophy resulting from causes other than alcohol-induced damage.

It is also not clear whether or not the same effects would occur in humans. Clinical trials involving human participants are necessary.

Outlook

The outlook for brain atrophy varies depending on the location and extent of the damage, as well as its underlying cause. For people with mild cases, there may be few long-term consequences.

When brain atrophy occurs due to a disease or condition, however, symptoms may worsen over time. Long-term treatments and therapies can help slow this process and help a person manage any resulting cognitive impairments.

For injuries such as TBI and stroke, receiving immediate and effective care can significantly improve the outlook.

Summary

Brain atrophy refers to a loss of neurons within the brain or a loss in the number of connections between the neurons. This loss may be the result of an injury, infection, or underlying health condition.

Mild cases of brain atrophy may have little effect on daily functioning. However, brain atrophy can sometimes lead to symptoms such as seizures, aphasia, and dementia. Severe damage can be life threatening.

A person should see a doctor if they experience any symptoms of brain atrophy. The doctor will work to diagnose the cause of the atrophy and recommend appropriate treatments.

 

Source: medicalnewstoday.com

PHOTOSENSITIVE EPILEPSY DETECTION FOR HDR FROM VENERA

PHOTOSENSITIVE EPILEPSY DETECTION FOR HDR FROM VENERA

The first QC product to provide the Harding Test for photosensitive epilepsy (PSE) within HDR content is now available.

PSE is triggered by visual stimuli (such as light flashes, stroboscopic effects or flash photography) that overload the brain temporarily and cause a seizure. PSE affects about one in 4,000 people.

Cambridge Research Systems provides the most accurate and widely used implementation as part of its HardingFPA Test for detection of such visual patterns.

The new HardingFPA algorithm for HDR has been implemented in the latest release of Venera’s AQC product Pulsar (7.0).

Broadcasters, studios and post houses can now perform PSE risk analysis of HDR-10 and Dolby Vision content and receive a HardingFPA compliance certificate.

Fereidoon Khosravi, Chief Business Development Officer at Venera, said: “For many years, the HardingFPA PSE risk analysis has been the worldwide de facto standard for PSE detection for SDR content. Media companies dealing with HDR content have been eagerly anticipating a means to accurately validate their HDR content. We are pleased to be the first to offer the latest enhancements for PSE detection in HDR content.

Steve Elliott, MD of Cambridge Research System, added: “We appreciate our long-term partnership with Venera Technologies and are pleased to have them be the first OEM implementation of our HardingFPA PSE risk analysis of HDR content.”

 

Source: ibc.org,  Adrian Pennington

RTS: ADA DAY, YAY!

RTS: ADA DAY, YAY!

ADA DAY, YAY! Today is the 32nd anniversary. Did you know that the Americans with Disabilities Act (ADA) was signed into law on July 26, 1990 by President George H.W. Bush?

Did you know that not all disabilities are visible? Sure, seeing a cane or wheelchair or other assistive device makes awareness easier, but for some people, their disability is invisible. For instance, it might be harder to “see” Post Traumatic Stress Disorder (PTSD), epilepsy, Crohn’s disease, multiple sclerosis (MS) and so many others.

Whether visible or invisible, those with disabilities carry enough (worry, isolation, loss, unfair treatment, judgment, pain, fatigue…) on a daily basis. Many carry on through, well enough from the outside, but please don’t think the load isn’t heavy some days.

Today, thanks to the ADA, many with disabilities have been able to get out more, find better or more accommodating careers, and are breaking down the barriers that once held them down.

ADAAnniversary.org has several ways to celebrate the day.

Here are a few to get you started: Hold Disability Awareness Events

  • Host a wheelchair game or races.
  • Exhibit works by artists with disabilities.
  • Sponsor a disability awareness poster contest.
  • Demonstrate the use of assistive devices at a community event.
  • Host an online or in-person discussion. Ask questions such as: What impact has the ADA had on your life? What would be different about your life if we did not have the ADA?

Throughout the year and on the ADA Anniversary (July 26), the ADA National Network recognizes this landmark event and the important work to promote equal opportunity for people with disabilities.

 

Source: bradfordera.com,

Epileptic woman with service dog refused cab ride

Epileptic woman with service dog refused cab ride

A Sherwood Park woman is raising the alarm about her treatment by a local cab company

Leanne Hughes, a Summerwood resident, relies on a service dog due to her epilepsy and claims she was recently refused a ride by Sherwood Park Flat Rate due to her dog named Hope.

“What they did was said they wanted cash first and I said I was not going to pay until I was brought home. I asked why it would cost more money and he said because it (the dog) was in the car,” explained Hughes. “He refused to take Hope with me, and then after I didn’t want to pay him before the ride, he told me to call dispatch and then that person told me to get out of the cab and get a different ride.”

According to the province’s Service Dogs Act, discriminating against a person lawfully using a qualified service dog or refusing access to qualified service dog teams could result in a $3,000 fine for businesses.

“A qualified service dog team has their rights to public spaces protected under the law. The right to public access means that a service dog team has the right to go anywhere the public may go,” the provincial government stated online.

The long list of public spaces outlined by the province included taxis and buses.

Hughes said she has contacted the Government of Alberta Service Dog Department, who advised her to talk to media outlets.

The incident left her feeling disappointed and angry. She said the company has not apologized or tried to make amends for what happened.

“Is this something you’d do with somebody with a wheelchair? Hope is my wheelchair and he didn’t want to have anything to do with her. I tried to show him her identification, but he was not interested in it,” Hughes said. “I explained it was against the law. I told him I would report him and he told me to go ahead and do that.”

The 1.5-year-old black lab is extremely well-trained and is meant to travel everywhere with her handler.

“Her name is Hope because she is to give me hope to leave my house. If I have a seizure I can grab her instead of someone else and hug them and not make sense and scare somebody,” Hughes said. “Now all my hope is gone. I feel scared to get to class and scared to go anywhere further than walking distance. I feel trapped again with my disability and feel stuck at home.”

The cab, dispatched by Sherwood Park Flat Rate, allegedly refused her service at the Sherwood Heights baseball diamonds on Sunday, July 10 at 7:15 p.m.

“This is not okay. It doesn’t matter if it is epilepsy or if you have a wheelchair, like the lady who tried to call the same number I called and they ended up not answering and blocked her number, this isn’t ok,” Hughes said. “There is a reason why we have the service equipment we have. I look fine, but I have epilepsy. It doesn’t matter what your disability is, (service dogs) are our wheelchair.”

Hughes said she wants everyone to know what happened and make sure it does not happen again.

“I would like them to be fined and for them to know they are not allowed to do this. I made it very clear because sometimes people aren’t educated in regards to it, so I explained it to them and I want everybody to be educated. These dogs are crucial, so crucial for us. Getting out in public and being comfortable is important and this shouldn’t happen to anybody,” Hughes said.

Sherwood Park Flat Rate Cabs did not return a request for comment.

 

Source: sherwoodparknews.com, Travis Dosser

Surfing lessons for young people with epilepsy return to Sea Isle City

Surfing lessons for young people with epilepsy return to Sea Isle City

SEA ISLE CITY — One South Jersey teenager is making waves in building a statewide community for epilepsy.

Paul’s Purple Warriors and the Epilepsy Services of New Jersey hosted their second annual Seize the Wave seminar Tuesday. The event takes young people with epilepsy into the ocean and teaches them how to surf in a welcoming, safe environment.

Paul St. Pierre, of Maple Shade, Burlington County, the namesake of Paul’s Purple Warriors, organized the event with the help of his mother, Colleen Quinn. St. Pierre is 15, a rising junior at Eastern Regional High School in Voorhees, Camden County, and was diagnosed with epilepsy when he was in eighth grade.

“I really think it means happiness, to see all these people surf and having epilepsy,” St. Pierre said.

“It’s amazing,” Liza Gundell, CEO of Epilepsy Services of New Jersey, said of the event.

Epilepsy is a kind of brain disorder that causes regular seizures. The Centers for Disease Control and Prevention reports that about 92,000 people and 12,000 children have epilepsy in New Jersey.

About three dozen young people and their families turned out at the beach off 37th Street in Sea Isle. Each surfer received one-on-one lessons from a volunteer instructor who surfed with them and could respond if their students encountered any trouble out on the water. Heritage Surf Shop and Tass Home Remodeling partnered with the organizers to host the event and helped provide the instructors.

Surfing, and most activities in water, are usually considered unsafe for people with epilepsy, with St. Pierre noting that the ocean could be especially scary, making Tuesday a unique opportunity for these kids.

Jared Muscat flew to the Jersey Shore from California for Seize the Wave and was its star guest for the second consecutive year Tuesday. Muscat was diagnosed with epilepsy just before he left for college at 17. Despite his diagnosis, he was determined to continue surfing and has partnered with the Epilepsy Foundation to raise awareness.

Muscat is now 31 with a wife and son and still loves to surf. Paul’s Purple Warriors reached out to him via Facebook, and Muscat said he was glad to be able to come out, serving as an inspiration for others.

“It means a lot to come out and be friends with these kids and be a support for their parents, a resource they can talk to,” Muscat said.

William Reichenbecher, 7, of Point Pleasant, was among the trainees Tuesday. He had attended last year’s event and was brimming with excitement about riding the waves again.

“When we saw the event last year, I just cried the whole day,” said Sarah Reichenbecher, William’s mother. “When you have days like today, with a support community, it normalizes everything, which is super important.”

For Liberty Glass, of Middletown, Monmouth County, Tuesday was her first time on the board. She called the experience “really fun.”

“I was surprised how hard it was,” Glass said. “The people on TV make it look so easy.”

Dr. Jeff Geller was the physician on site for the event. His son Dylan, also an Eastern Regional student with epilepsy, participated Tuesday.

Geller said it “broke his heart” when he struggled to find medicine to treat his son’s epilepsy. Dylan now takes CBD, a chemical found in marijuana, which Dr. Geller said is successfully treating his son’s symptoms.

Mia Vazquez, a rising sophomore at Arizona State University, was among the trainers for the day, surfing with William Reichenbecher. She said she was glad to help families who may have been afraid to take their children out to the beach find a safe outlet.

“It’s all about just the kids and getting them to be able to do something that they haven’t been able to do,” Vazquez said.

Mrs. Brizzle’s Buns catered the event, and the children could grab hoagies and other lunch food after surfing. Tony Mac, a guitarist from Lititz, Pennsylvania, played live music.

St. Pierre’s advocacy is not limited to the shore. He went to Trenton to advocate for legislation to make New Jersey schools and businesses more accommodating to young people with epilepsy.

Due in part to St. Pierre’s efforts, Gov. Phil Murphy signed a law in January 2020 requiring schools to develop individualized health care plans for students with epilepsy or other seizure disorders. It also requires that schools train all personnel to care for said students. The legislation was titled “Paul’s Law.”

Susan Roth, director of special services for Eastern, praised St. Pierre for his resilience and said he was more than deserving of the name “warrior.”

Quinn, St Pierre’s mother, has helped him change the landscape of seizure care in New Jersey and has been a source of support for her son as he has grown up with epilepsy. She said she was touched by the solidarity and community on display Tuesday.

“It’s enough to make you tear up over the camaraderie for all these kids,” Quinn said.

Quinn and St. Pierre are currently advocating for legislation to strengthen Paul’s Law, requiring school staff to regularly renew their certification in seizure response training. They also are working to advance a bill that would require businesses to post signs about epilepsy response.

Colin Dowling-Ashworth, of Hunterdon County, was another first-time surfer Tuesday and said surfing was just an example of what was possible for those with epilepsy.

“Of course, you got to be careful, but you can really do anything you want,” Dowling-Ashworth said. “Just take precautions and have fun.”

Lexi Yeatts, of Cherry Hill, is a Special Olympian with a gold medal in swimming. She has epilepsy, though she said she hadn’t had any seizures in two years.

Yeatts was there to surf and praised the experience.

“No matter what your disability is, or what’s wrong with you, you can still do it,” Yeatts said.

 

Source: pressofatlanticcity.com, Christopher Doyle

Transdermal CBD No Better Than Placebo for Drug-Resistant Focal Epilepsy

Transdermal CBD No Better Than Placebo for Drug-Resistant Focal Epilepsy

At week 12, no difference in seizure frequency seen between cannabidiol and placebo as adjunctive therapy in adults.

MONDAY, July 18, 2022 — For adults with drug-resistant focal epilepsy, no difference in efficacy was observed at 12 weeks for adjunctive therapy with transdermal cannabidiol versus placebo, according to a study published online July 8 in JAMA Network Open.

Terence J. O’Brien, M.D., from Monash University and The Alfred Centre in Melbourne, Australia, and colleagues conducted a randomized, placebo-controlled trial at 14 epilepsy trial centers to examine the efficacy, safety, and tolerability of transdermally administered cannabidiol in adults with drug-resistant focal epilepsy. Participants had drug-resistant focal epilepsy and were receiving a stable regimen of up to three antiseizure medications. A total of 188 patients were randomly assigned to 195 mg or 390 mg transdermal cannabidiol or placebo (63, 62, and 63 participants, respectively) for 12 weeks, after which they could enroll in an open-label extension study.

The researchers found that at week 12 of the double-blind period, no difference was seen in seizure frequency between placebo and 195 mg or 390 mg cannabidiol (mean, 2.49, 2.51, and 2.59 seizures per 28 days, respectively). Overall, 60.8 percent of patients achieved a seizure reduction of at least 50 percent by month 6 of the open-label extension. Treatment-emergent adverse events occurred in 50.4 and 41.3 percent of participants in the cannabidiol and placebo groups, respectively, and occurred at similar rates in the cannabidiol groups. Few participants discontinued (7 percent), and 98 percent continued into the open-label extension.

“Additional randomized, well-controlled clinical trials using higher doses of transdermal cannabidiol in this patient population appear to be warranted,” the authors write.

 

Source: consumer.healthday.com

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: khn.org, 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: uk.sports.yahoo.com, 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: healio.com, 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.

 

Source: news.fsu.edu, AUDREY POST

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: thewrap.com, 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.

 

Source: emergency-live.com,

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: wafb.com, 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: epilepsysociety.org.uk, 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: newswise.com,  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: healthline.com, 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: hollandsentinel.com, 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.

 

Source: santafenewmexican.com

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