Join us for “Under the Lights,” an inspiring story about a teen with epilepsy, followed by a Q&A with the film's writer and director Miles Levin and executive producer Greg Grunberg. This event is hosted by Scott Perry, M.D., an epileptologist and head of Cook Children’s Jane and John Justin Institute for Mind Health. 

This event begins at 6 p.m. with light appetizers, followed by the film screening and virtual discussion. Registration is required to attend. Get your complimentary tickets here.

The Story

Under the Lights is the story of Sam, a boy with epilepsy, so desperate to feel like a normal kid, he goes to prom knowing that the lights will make him have a seizure. 

Cinema has historically stigmatized and ignored people with epilepsy. A demographic of 1 in 26 who have almost never been represented authentically on screen, and suffer from brutal stigma every day. Written and Directed by filmmaker with epilepsy, Miles Levin.

Learn more about "Under the Lights" here.

Story by Ashley Antle. Video by Tom Riehm.

There was a time when world-renowned painter John Bramblitt’s life was shrouded in darkness. At the age of 31, after years of gradual vision loss due to complications from epilepsy, Bramblitt lost the last of his eyesight. 

Bramblitt was 2 years old when he had his first seizure. From that point on, he spent his childhood in and out of hospitals. During his most severe seizures, Bramblitt’s heart would momentarily stop beating and he would stop breathing. As a teen, his epilepsy was further complicated by Lyme disease, which he likely contracted years before it was discovered and diagnosed.

To pass the time and cope with the many days and nights he spent in the hospital as a child, Bramblitt turned to art, an activity he has loved since as far back as he could remember. 

“I love to draw and I think I could draw before I could walk,” he said. “For some reason, in my own brain, art just makes sense. It was my way of figuring things out. It became really important because, even in the hospital, it's easy to have stuff to draw with. You can have crayons. You can have pencils. So it's easy to bring drawing stuff with you everywhere you go. And I drew every day. I took every class I could take on drawing and read every book that I could about it and different artists.”

Drawing was Bramblitt’s connection to the world outside of his hospital room. It was his escape from epilepsy and helped him process the daily health challenges he faced. 

Then, while a student at the University of North Texas, his world began to go dark. Damage to Bramblitt’s brain from years of seizures eventually took 40% of his hearing and all of his sight. Bramblitt spiraled into a deep depression, thinking the artist in him was also lost forever. 

“After my eyesight went, I didn't think I'd ever be able to draw again,” Bramblitt said. “Honestly, I was so angry and so depressed. I just didn’t feel like I had any future. I didn’t have any hope.” 

But the artistic abilities Bramblitt used to make sense of his difficult circumstances were still there and eventually resurfaced in his soul. 

The Darkness Fades 

“It took me about a year to learn how to travel independently to leave my little college apartment and travel a short distance to the university,” Bramblitt explained. “Then it occurred to me if I can cross these streets, surely I should be able to use these same techniques to cross a canvas. So I got some materials and I just started to draw.”

Instead of a pencil, Bramblitt picked up a paintbrush. He never considered himself a painter or even felt like he’d be good at it, but he knew the texture of paint would allow him to feel his work, something he couldn’t do with pencil or charcoal. 

“I thought, well, at least I could get paint and I could touch it,” he said. “So I could touch red, and I could touch blue. I still remember what colors look like.” 

Bramblitt began painting the lines and shapes of objects that he felt, and taught himself to navigate each work of art the same way he navigates the world around him — through touch. A special additive that gives paint texture allows him to customize the feel of each paint color so that he can differentiate where his paint lines begin and end.

He says his first completed drawing after becoming visually impaired was the worst work of his life, but the most proud he’s ever been of a piece. Bramblitt had no idea how far he could go with the rediscovery of his skills, but he knew he could at least get what he was seeing in his mind’s eye and feeling in his soul on paper again. 

“For the longest, I didn't think anybody would ever want to see a painting of mine,” he said. “I mean, why would they? But it was helping me.” 

It wasn’t long before Bramblitt was painting up to 16 hours a day. The more he painted the more the darkness lifted. Art was once again a way to cope, communicate and connect with the world around him, this time with more vibrancy, color and emotion than ever before. 

“That's really why I paint with realism, instead of it just being all abstract,” Bramblitt said. “I want to feel people's faces. I want to feel objects, and I want to incorporate that into the artwork so people know that I'm actually understanding the world. It gives me a way to be able to tell stories. Over the years, though, I care a little less about what people think, but I still love telling stories and I love communicating with people. So I still paint realistically, but the colors are very abstract. Colors are a wonderful way to be able to tell emotion.” 

Patience and Perseverance Pay Off

Following the encouragement of a friend, Bramblitt began entering his paintings in art shows. Initially, he did not reveal to people viewing his art that he was blind. He wanted others to see the work for what it was and not for the fact that it was created by a visually impaired individual. 

Today, Bramblitt’s art has been sold in more than 120 countries. His masterpieces and story have been featured in national and international news outlets, numerous magazine covers and even major feature films. 

But it took time, he says, and he encourages others facing similar challenges to be patient with themselves and their progress. 

“We always want everything right now, but give yourself time to work through things and don’t be afraid to fail every once in a while,” he said. “It's OK for things to not work out. If things aren't going wrong every once in a while when you're doing something, then you're probably not trying enough new things. Be easy on yourself and give yourself time.”

A Magical Mural

Bramblitt’s latest work is a 6-foot-tall by 15-foot-long mural depicting Fort Worth’s rich culture and vibrant identity. It will hang at the entrance to the new Jane and John Justin Institute for Mind Health. The piece was commissioned by Scott Perry, M.D., head of Neurosciences at the Justin Institute and self-proclaimed art enthusiast. Dr. Perry was first introduced to Bramblitt and his work at an Epilepsy Foundation Texas fundraiser. 

“As an epileptologist and art lover, I instantly connected with John, his story and his work, and initially asked him to do a project with the kids in Cook Children’s Epilepsy Monitoring Unit during Epilepsy Awareness Month,” Dr. Perry said. “When we began thinking about artwork for the Justin Institute, I wanted to feature pieces that would be more than just pictures on a wall. I wanted the artwork to be an experience for visitors, and for children and families to see hope for their own stories in these pieces, and I knew John was the perfect artist for this. Not only is his work beautiful and powerful all on its own, but his story will be an inspiration to every child that hears it and sees this painting.”

The star of the mural is a little girl surrounded by iconic Fort Worth scenes, including a calf and a singing cowboy. The bright, bold colors in one scene are balanced with the depiction of a nighttime scene that Bramblitt says includes “all kinds of wonderful, nice things.”

“For a child in the hospital, the hard times often are at night and on weekends, especially if you're in the hospital for weeks or months,” he said. “You'll have a lot of visitors sometimes during the week, but it seems like the weekends just drag on. So I wanted to have a little bit of the darkness there, but also have it pleasant and happy as a reminder that there are positive, wonderful times.”

Bramblitt’s painting is one of a number of neuro art installments at Cook Children’s. Every work within the neuro art collection was created by artists who have a connection to the neurosciences through their own personal experiences or careers.

Bramblitt hopes his mural connects with the feelings kids face when up against a health challenge, while also evoking confidence, optimism, a sense of calming reassurance and, above all else, happiness for those who pass by.

“I honestly thought my life was over whenever I lost my eyesight,” he said. “I'm still epileptic and I'm still blind, but I'm happier than I've ever been. I get to do things like this mural, and I get to travel, and I get to meet and talk to people and hear their stories. I'm just really happy.”

To many parents and their children, M. Scott Perry, M.D., head of Neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s, is best known as an epileptologist. One who isn’t afraid to take on rare and difficult childhood epilepsies. An active clinical researcher, always searching for therapies to treat and cure epilepsy. A relentless advocate for his patients.

But his more than 8,000 Twitter followers know him as @TheNotoriousEEG, and follow him for his take on everything from epilepsy research to food, music and art. Despite his healthy following, Dr. Perry was initially reluctant to join the Twitterverse.

“At some point, people within the hospital asked me if I would consider joining social media, and my immediate answer was, ‘No, thank you,’ because I have a lot of stuff to do, and I don't need to add another activity to my life,” Dr. Perry said. “But they seemed to think I would be good at it. So I decided if I could come up with a handle that was clever enough, then I will do it.”

Dr. Perry elicited naming ideas through a contest with his colleagues in the neuroscience department but none of the suggestions felt right. Then, it came to him: @TheNotoriousEEG, a play on his love for 90’s rap music and his favorite artist, The Notorious B.I.G., coupled with a nod to his work with the acronym of a common neurologic test called an electroencephalogram (EEG).

Dr. Perry’s Twitter feed is as diverse as his interests. Yes, you’ll find a lot of posts about epilepsy awareness and medical research, but you’ll also see pictures of the nightly meals he cooks for his family, his weekend cheer dad persona as he follows his youngest daughter to cheer competitions and his support of Texas Christian University where his oldest daughter is studying to be a nurse. Scroll a little more and you’ll pick up on his love for art, something he gets from his antique-loving mother with an eye for beautiful things.

His initial reluctancy to tweet has given way to cautious appreciation, and he’s proven himself a natural at harnessing the power of social media for good.

“Despite all of Twitter's problems, I think that it's a good platform for scientists, frankly, to share information very quickly,” he said. “It's a great way to connect with patients and other advocates quickly and to bring them information that maybe they don't have available to them or to gain knowledge from others that you didn’t have access to. It's a way to share expertise widely with people that might not have access to some of those things all the time. Beyond that, it's a good way to show people that doctors have lives and personalities and, to some degree, we are regular people, too.”

The Doctor from the Delta

Dr.  Perry’s road to becoming a world-class pediatric epileptologist began in the Mississippi Delta where he was born and raised in the small town of Cleveland, Mississippi — home to the Delta State Fighting Okra! His father owned and operated a used car company and his extended family operated lots throughout Mississippi. The family business is still in operation today with his two older siblings at the helm.

As a kid, Dr. Perry had his sights set on an occupation that would take him far beyond Mississippi into parts unknown. He wanted to conquer space exploration as an astronaut. But, during a stint at Space Camp, Dr. Perry was told his vision was not perfect and he would never be able to command a space shuttle. 

“If you know my personality, my goal is to be the commander,” Dr. Perry said. “So I had to step out of the astronaut business and try to look at something else. Being a doctor sounded challenging.”

During his junior and senior year of high school, Dr. Perry attended the Mississippi School for Mathematics and Science, followed by Emory University in Georgia for his undergraduate degree in physics. That’s also where he met his wife of 22 years, Becky.

Dr. Perry went back to his home state to earn his medical degree at the University of Mississippi School of Medicine. It was there that a neuroanatomy class stoked his desire to specialize in neurology. He said that, for him, the subject matter “just clicked.”

Following medical school, Dr. Perry returned to Emory University for his pediatrics and child neurology residencies. In 2008, he joined Nicklaus Children’s Hospital in Miami, Florida, to pursue a neurophysiology fellowship. 

Westbound to Cowtown

When his training was complete, Dr. Perry longed for a place to practice medicine free from the bureaucracy that came with medical facilities attached to teaching institutions. It just so happened that he came across an advertisement for Cook Children’s. He had never heard of the place but was impressed that the medical center had an epilepsy monitoring unit and was performing a healthy amount of epilepsy surgeries, which is where his interest lay.

“It just sounded like a decent opportunity, so I decided I'd come and give it a shot and see who these people were,” Dr. Perry said. “I came and interviewed here and I really loved the concept of what they were doing, and how these were essentially private practice neurologists. They were doing things that you would typically only see being done in an academic medical institution, but they were doing it here in a private children's hospital. This kind of pioneering spirit they had was really impressive to me.”

Thirteen years later, Dr. Perry has blazed a trail at Cook Children's as an expert in rare genetic epilepsies and epilepsy surgery.

“I find both of those things incredibly rewarding because I love to tackle very difficult cases and break them down, hopefully, to determine either where the seizures are coming from or why the seizures are occurring,” he said.

He’s admittedly the type of person that does not deal well with incremental change. It's either go big or go home. That’s why Dr. Perry loves epilepsy surgery. When a patient comes out of an operation seizure-free or with significantly reduced seizure activity for the first time in their lives, it’s an immediate payoff.

When an operation can’t cure a condition, like in the case of many genetic epilepsies, it is his patients and their families that keep him going. The tenacity of the families that deal with these conditions, and the relentless drive to help their children through advocacy, forming their own non-profits, and funding the research necessary to find cures, is all the inspiration he requires to do his job daily. Dr. Perry says that, thanks in large part to their efforts, we see the advent of new therapies and the potential of disease-modifying treatments to correct the underlying genetic cause of these rare conditions.

Collaborating for Mind Health

In addition to his patient load, Dr. Perry is overseeing the transformation of Cook Children’s divisions of neurosciences with the development of a unique and comprehensive care model for children with diseases of the nervous system. It’s known as The Jane and John Justin Institute for Mind Health at Cook Children’s. Nine specialties that commonly overlap in the treatment of nervous system disorders, and have traditionally been siloed in separate locations, are coming together under one roof to make care easier and more efficient for patients and families. The Justin Institute will also open the door of collaboration between physicians and other providers when it comes to shared patients.

“I'm excited about the potential convenience for families to be able to get everything done in one fail swoop. To park your car once, and to miss one day of work, and to get out of school one day and get everything you need,” Dr. Perry said. “Then on the backside, knowing that your doctors are all down the hallway from each other and can be face-to-face about your care and make sure everybody's on the same page.”

Dr. Perry has personally curated much of the neuro-focused art that will hang in the hallways of the Justin Institute, housed in the newly expanded Dodson Specialty Clinics building at Cook Children’s Medical Center. The pieces range from paintings of Fort Worth’s skyline to images of the brain made from glass. All of the art installations were created by artists with a connection to the neurosciences in an effort to make the topic of brain science more approachable.

“I'm very excited about the building because I have spent a lot of time obsessing about how it’s going to look and how it's going to work,” he said. “It'll be our version of Disney for neuroscience. A place you look forward to coming to for the care of your child.”

Getting the Justin Institute up and running hasn’t been easy, but for someone who wants the best possible care experience for patients, it’s been worth it. He says bringing this many specialties together in order to attain a collaborative network encourages change across all nine divisions. It has required a lot of listening and learning on his part in order to understand how specialties outside of his, like behavioral health or developmental pediatrics, run their clinics so that they can build a care model that is good for patients and providers.

Collaboration within the Justin Institute will also expand neuroscience research opportunities into behavioral health, developmental psychology, autism and other disorders associated with the nervous system.

Even though Cook Children’s is not a traditional academic medical center affiliated with a teaching institution where research is a cornerstone of the programming, the medical center has a robust research arm. It’s one of the things that attracted Dr. Perry to the health care system.

“We're the most academic, non-academic place in the country, in my opinion,” Dr. Perry said. “I think the way we're doing it is unique and offers more opportunity for access to patients for enrollment. I like to think it's a bit healthier research environment because the Dodson Neurosciences Research Endowment is there to cover the salaries of the research employees regardless of grant funding. And then, because we're not tied to any one institution, it allows us to collaborate with numerous institutions and have multiple partners.”

Dr. Perry was instrumental in launching the Dodson Neurosciences Research Endowment at Cook Children’s, which he says is a game changer in taking the medical center, already renowned for its clinical care, to one also recognized for ground-breaking research. It’s one of his proudest accomplishments so far.

Even with all of these big medical career moments, Dr. Perry has not forgotten his Mississippi Delta roots. Look no further than his Twitter feed for proof. Shrimp and grits, po-boys and gumbo — all home-cooked by one of the nation’s leading epileptologists, aka @TheNotoriousEEG.

“I'm just a simple man from Mississippi,” Dr. Perry said. “I just happen to be pretty decent at epilepsy.”

Making a school “seizure ready” can entail a number of steps and it is important to get started on these as soon as possible. M. Scott Perry, M.D., medical director of Neurology and an epileptologist at  Cook Children's, offers the following advice.

Step 1: Does your child have a seizure action plan?

One of the most important components of being prepared for the school year is having a plan in place should a seizure occur. A seizure action plan is a form provided by your medical team which describes the types of seizures a child has and what to do if one occurs. The plan covers the key components of seizure first aid, as well as for instructions on how and when to use rescue medications for the child’s seizures. A standard form is provided by the Epilepsy Foundation and is commonly used.

Click here for a Seizure Action Plan from the Epilepsy Foundation.

For future reference, I encourage parents to begin requesting updated Seizure Action Plans at least a month before the school year starts, as many clinics get thousands of requests before the start of school and completing them may take time.

Step 2: Is your child’s rescue medication appropriate for their current age and weight?

Rescue medications are commonly prescribed to patients with epilepsy and are most often used for seizures that are prolonged or occur in clusters. Each patient will have unique circumstances for which a rescue medication may be appropriate. Some patients may not have a rescue medication as part of their Seizure Action Plan – for example, if their seizures are rare, well-controlled, and typically very brief.

A variety of rescue medications are available. For prolonged seizures, particularly convulsive type, patients may use rectal diazepam or intranasal midazolam. These medications are favored because they can be absorbed quickly for rapid treatment of the seizure and they don’t require putting anything into the mouth of the person that is seizing. Rectal diazepam comes ready to use for the age/weight of the child. Currently, nasal midazolam will have to be measured out by school staff before administration, but a new ready-to-use formulation has been approved by the FDA and should be available soon.

For patients with clusters of brief seizures, rescue medications such as clonazepam can be given by mouth between seizures. Several other medications, such as diazepam, midazolam, and lorazepam, also come in oral formulations that might be swallowed or put between the gum and cheek of a patient for effect.

It is very important that parents and their providers make sure the rescue medication prescribed for the child is appropriate for their age and weight. As a child grows, the dosing of medications will change. For those patients that have rare seizures and rarely require rescue medications, it is possible that the dose prescribed years ago may no longer be appropriate and therefore, may be less likely to work if the dose is too low.

Step 3: Can your child’s school administer the rescue medications provided?

It is important to know what medications your school is able and willing to give. While rectal diazepam is commonly used in schools, there are some school districts in the U.S. that only allow the medication to be given by a school nurse or similar medical personnel, even though the drug was designed to be administered by laypeople. If your school does not have a full-time nurse, there may be times when the medication cannot be given and an alternative rescue plan may be needed. Likewise, some school districts will not administer nasal midazolam because this formulation of the drug is not FDA approved to be utilized in this manner, though in the medical profession, we’ve used it this way for many years. Talk to your school about the seizure action plan recommended by your medical team. If they are unable to give rescue medications suggested, talk to your team to see if there are alternatives or if training can be provided to the school to ensure the rescue plan is followed.

Step 4: Is your child’s school “seizure ready”?

Probably the most important step in making sure your child is safe at school is making sure the people caring for them during the day are prepared to recognize and treat seizures. Despite how common epilepsy is, many people are only familiar with one type of seizure – tonic clonic (previously referred to as “grand mal”).

It is important that teachers and staff understand what seizures look like for each child with epilepsy, so they can recognize when rescue treatments may be needed, but also to keep parents informed if seizures are occurring frequently and may require a visit to the doctor to discuss treatment changes.

Some seizures, such as absence and partial seizures, may only manifest as staring or decreased response. For these cases, it is important that staff are aware so they can recognize seizures and don’t confuse these behaviors with simply ignoring instructions or bad behavior. Finally, for some children, their first seizure may occur at school and it is important that staff be able to recognize seizures in those who may have no prior history.

There are a number of ways for school personnel to become educated about epilepsy. The Epilepsy Foundation provides many resources including online and in-person training of school nurses and staff on seizure recognition and first aid.

Click below for a couple of great tools:

Managing Students with Epilepsy – school personnel and school nurse training

Seizure Training for School Personnel

The Epilepsy Foundation will also provide an ECHO course for school nurses starting October 2019. This is an online, interactive course for school nurses that includes instruction from epilepsy experts and allows for collaborative case presentations to discuss seizure recognition, first aid, and rescue treatments. Information for this course will be available on www.epilepsy.com in the near future. A helpful Seizure First Aid poster can be found by clicking here.

Finally, the Epilepsy Foundation will host a webinar from 7-8 p.m. CST on Wednesday, Sept. 25, 2019, on rescue therapies are open for anyone to attend.

Resources For Parents:

• Cook Chidren's Comprehensive Epilepsy Program
• Epilepsy
• Sam's Law
• Seizure Action Plan
• Seizure First Aid
• Seizure Training for School Personnel
• Managing Students with Epilepsy - School Personnell and School Nurse Training

Dr. Keator, who is a pediatric neurologist and epileptologist at Cook Children’s, began volunteering at Cook Children's at the age of 14 as a title holder with the Miss Texas Organization. Along with many of the other titleholders, she would perform her talent for patients in the atrium. Back then she performed ventriloquist routines.

“My fondest memory is being in the Atrium performing and you look up and see all the children and their parents looking down and watching you,” she said. “It was so daunting then and now I walk past it all the time.”

Then in 1998, through a senior internship program during her senior year at Trinity Valley School, she spent her spring semester with Hematology and Oncology at Cook Children’s.  

The department held a special place in her heart because her cousin battled cancer there. That stint with the doctors made such an impact on her that after completing her internship, she continued to volunteer at the medical center.

When asked if she always wanted to be a doctor, Dr. Keator said, “I always knew I wanted to do something in the medical field. We all have that childhood dream of what we want to be when we grow up, and even then I always wanted to help people, especially children.”

As a volunteer, she tried to ask good questions and absorb as much knowledge as possible to prepare her for medical school. She learned the importance of listening to the patients and their families. She also saw science come to life. It wasn’t just about studying words in a book; it was seeing how medicine and medical care actually worked.

“Volunteering here I also realized how little I knew!” Dr. Keator said. “Just regular biology or chemistry class in high school is nothing compared to what people do in real life. It was a process, where I learned that being a doctor was about more than just being smart, it really takes a lot of compassion and motivation. I was able to see the interaction of the doctors and nurses with the patients. I realized I had so much more to learn than what was just in a textbook. ”

It was through her volunteering at Cook Children’s that she developed her interest in working with children, especially those needing chronic or long-term care. “I learned my true passion of wanting to help others was the relationships you develop with your patients and their families,” says Dr. Keator. “In neurology, we care for many children with neurological conditions that require close follow up and care, as many of our patients are cared for from birth through adulthood. Of course, I enjoy the pathophysiology of neurological conditions, especially epilepsy, but, what I also love about my field is that you become part of the team and you truly get to know the family.”

Now at Cook Children’s, Dr. Keator sees new people learning those same life lessons. “I see volunteers today at Cook Children’s and they are all age groups who choose to spend time with our patients. I’m so thankful so many people want to come here and volunteer and help with the children. It’s pretty incredible. “Everyone should volunteer. It’s good for the soul.”

Dr. Keator said that working at Cook Children’s is “totally surreal” because it was everything she aspired to do as a child. “It’s really cool to look back and say, ‘Wow, I did it.’”

What are some of the symptoms of SCN8A-related epilepsy? Children with SCN8A epilepsy often present early in life with developmental delays which may occur from birth or may arise shortly after seizure onset. Seizures often begin in the first 18 months of life (average 4 months) with a variety of seizures types including infantile spasms, generalized tonic-clonic, myoclonic, focal-onset, and absence seizures amongst others. Seizures are often difficult to control in 70 percent of patients. Movement disorders such as myoclonus (quick jerk-like movements), dystonia (fixed abnormal posturing of the limbs), ataxia (unsteady, incoordination), and choreoathetosis (constant, irregular, writhing movements) are also common manifestations. Mild to severe intellectual disability is common and many patients demonstrate autistic symptoms.

What is the cause of SCN8A-related epilepsy? Dr. Michael Hammer, Ph.D., first discovered the SCN8A gene as a cause of epilepsy when he was searching for the cause of his daughter Shay’s epilepsy. Shay unfortunately passed away from Sudden Unexplained Death in Epilepsy (SUDEP), but we continue to celebrate her life and raise awareness of this syndrome on her birthday (2/9) each year. To learn more about Dr. Hammer and Shay’s story, click here. 

SCN8A is a gene which encodes a sodium channel found throughout the nervous system and highly expressed in the brain. Sodium channels are in part responsible for generating the electricity of the brain. In children with mutations in SCN8A, sodium channels can open too easily or stay open too long which produced increased electricity and tendency for seizures. Mutations in SCN8A are almost always de novo, meaning they occur spontaneously and were not inherited from the parents. SCN8A mutations cause an autosomal dominant disorder, meaning only one gene mutation is required for symptoms of the disorder to arise.

How is SCN8A-related epilepsy diagnosed? Diagnosis is made using genetic testing in patients with appropriate clinical features. MRI is often normal or may show some global atrophy. EEGs often show slowing of the background rhythm with multifocal spikes.

Is there a treatment for SCN8A-related epilepsy? Unfortunately, there is not yet a cure for SCN8A-related epilepsy, however, certain sodium channel drugs (for example, carbamazepine, phenytoin, oxcarbazepine) have demonstrated more favorable responses for seizure control. Many families have reported levetiracetam to worsen seizures. Aggressive control of seizures with a clear rescue plan for prolonged seizures is important. Other manifestations such as spasticity and movement disorders can be managed to some degree with medications and therapy.

What other problems might be found in patients with SCN8A-related epilepsy? Anecdotally, patients with SCN8A mutations are often reported to have exaggerated startle response or excessive jitteriness in infancy. Some patients may have small head size (microcephaly), visual impairment, hearing impairment, and autonomic dysfunction (for example trouble maintaining temperature or steady heart rate). As more patients with SCN8A are discovered, the characteristics of the syndrome continue to evolve.

For more information about SCN8A and SCN8A Awareness Day, visit http://www.scn8aawarenessday.net/.

The Texas Department of Public Safety will be responsible for the licensing of at least three dispensing organizations by Sept. 1, 2017 before CBD will be available for patients.

CBD is the non-euphoric component of marijuana and contains no psychoactive properties, so it doesn’t produce a “high.” CBD is not administered by children smoking. It is typically formulated into an oil-based liquid so it can be given by mouth.

Texas agencies will regulate the distribution of the oils to patients whose symptoms have not responded to available treatments and the risks of treatment are outweighed by the potential benefits, according to their epileptologist. The treatment has to be agreed upon by two epileptologists before CBD can be administered.

M. Scott Perry, M.D., medical director of the Epilepsy Monitoring Unit and Tuberous Sclerosis Complex Clinic at Cook Children’s, estimates he discusses with parents and patients the pros and cons of marijuana use for epilepsy three or four times a day at minimum.

Dr. Perry said families are looking for any therapy that works for their child’s uncontrolled seizures once other options have failed, and some have either left the state or had plans on leaving Texas if the bill didn’t become law.

“I think we have seen enough in the other states that have already made CBD available to understand there is potential benefit to CBD use,” Dr. Perry said. “From what we’ve seen in the medical community so far, it’s very encouraging, but more research still needs to be done before CBD is a treatment of choice for most patients with epilepsy. For now, CBD may provide benefit for a small population with intractable (unmanageable) epilepsy, in which other treatments have been unhelpful. I’m glad that this bill will now afford me the same opportunity as other physicians in my field to prescribe CBD to this population of patients in Texas.”