We celebrated all of our world-class doctors. From diagnosing a stomach bug to operating on a broken leg to making treatment plans, the work they do every day is making a difference in the lives of children.

8th Annual Slime-A-Doc

On Thursday, Cook Children's employees, patients and patient families also participated in our 8th annual Slime-A-Doc! You can rewatch the Facebook Live here.

This year, we had four categories of participants: physicians, nurses, child life specialists and members of the Cook Children’s Health Care System’s leadership team.

Thank you to everyone who participated! A big shout-out to Martin Aguado and the Facility Appearances team for making this event possible!

Cheryl Petersen has had an amazing career in the nursing field. She came to Cook Children’s with the plan to help start the Pediatric Intensive Care service. She has held many nursing leadership positions at Cook Children’s and currently serves as the Chief Nursing Officer.

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3
• Google Play

Maria Perez, M.D., is a pediatric rheumatologist with Cook Children’s in Fort Worth, Texas. She has practiced pediatric rheumatology for 23 years and continues to find joy in her career despite the unique challenges of caring for children with chronic illness. Her clinic has been a winner of the Practicing the Promise award eight of the last nine quarters. The award is based on elements of patient satisfaction and depends upon a the impression that the staff has made upon patients and families.

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3

Today’s guest is Dr. Artee Gandhi. She is a pediatric anesthesiologist and pain management specialist. She has trained across the country including residency at the University of Missouri and fellowship at Stanford Univeristy.

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3

Today we are going to talk again with Mary Uhl Bien. If you didn’t catch our last conversation, go to checkupnewsroom.com/pediatricleadership and find Episode nine where we talked about leading through complexity. Mary is the BNSF Endowed Professor of Leadership at the Texas Christian University Neeley School or Business. She teaches in the Advancing Healthcare Leadership class which is a combined initiative between Cook Children’s and TCU.

Ways to listen:

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3

We talked last week about complexity and how it is changing the way that business and particularly health care organizations must operate if they want to be successful. To position ourselves for success, we must have leaders that not only accept complexity but that are agile and ready to change in complex environments.

Today, we are going to talk again with Mary Uhl Bien. If you didn’t catch our last conversation, go to checkupnewsroom.com/pediatricleadership and listen to "What is complexity?" Understanding the answer to this question will be important to discussing how you can learn to lead through complexity. Mary is the BNSF Endowed Professor of Leadership at the Texas Christian University Neeley School or Business. She teaches in the Advancing Healthcare Leadership class which is a combined initiative between Cook Children’s and TCU.

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3

I’d be hard pressed to compare waiting for a doctor’s appointment including an appointment with me to the anticipation of waiting in line for any Disney ride or show.

It happens that the question about Disney and healthcare actually crossed my mind in March. While checking in on Twitter, I came across an intriguing book mentioned by one of the folks whom I follow: @JohnNosta.

The skeptic in me wondered how the entertainment industry could have any relevance to health care. Fortunately, the curious skeptic in me decided to buy the book and learn more.

The author approaches healthcare from a business, non-physician perspective focused on serving patients and those who care for patients. I found some fresh perspectives that I think will help me going forward.

Here are three pearls that I got out of the book.

Pearl 1: A focus on loyalty and not satisfaction

Loyalty and trust are different from satisfaction. Loyalty is built on a consistent caring and engaged compassion. Loyalty is built in large part by creating a memorable event in a patient care experience.

Pearl 2: Courtesy is more important than efficiency

A commitment to courtesy both improves experience and can lead to opportunities for efficiency improvement.

A focus on the satisfaction and service for others in your institutional may improve responsiveness and lead to better sharing of resources.

Pearl 3: Create a climate of dissatisfaction

Dissatisfaction with the status quo combined with the dream for what can be are key ingredients in growth and improvement. Even when all measures are near the top, there will always be room for improvement.Final Thoughts

I don’t believe it’s completely valid to compare the work done by me and others at Cook Children’s to work done in other service fields. Stakes and expectations are much higher - solving a problem, managing chronic illness, fixing a hurt - than getting a Starbucks order right or the thrill of a roller coaster ride.

Still we are all compared to real life experiences. Waiting in line is seldom fun. And the ride is sometimes not a ride the child or family would choose. We can still strive to make the experience as pleasant as possible.

About the author

Joel Steelman, M.D., is an endocrinologist at the Cook Children's Endocrine and Diabetes program, which treats infants, children and teens with conditions that are caused by or affect the hormonal balance of the body. We understand the importance of working together and that's how we approach the care of our children.

The world is changing quickly. The world of medicine is no different. Understanding how these changes affect you, your practice and your organization is critical to your success as a leader. At times, the amount of change can seem overwhelming. It feels at times that there is no order, only chaos.

• How do we survive in this environment?
• What is complexity?
• How do we see it in today’s world, both inside and outside of healthcare?
• How do we navigate the world of consumerism and value based health care?
• How do we as leaders prepare to work in this environment?

Listen to this episode of the Pediatric Leadership Podcast with our guest Mary Uhl-Bien is the BNSF Endowed Professor of Leadership at the Texas Christian University Neeley School of Business:

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3

There is no single criteria that makes a person eligible to lead. Education, job title and seniority can all be a start to establishing a role as a leader. But sometimes, the best leaders aren’t the highest ranking of any of the three. Today we are going to talk about leading when you are starting your career and how an early-career physician can develop leadership skills when they are not the most senior physician on their team.

Today’s guest is Matthew Carroll, M.D. He is a pediatric hospitalist at Cook Children’s and serves on Quality Improvement/Practice Management. Prior to coming to Cook Children’s, he served as the chief resident at Cincinnati Children’s Medical Center.

Questions to work through on the topic:

• What do you think are some personality characteristics that allow you and other young physicians to find roles within leadership?
• How big of a factor is the institutional culture toward the ability to develop young leaders?
• How do you see medicine changing now and as we go into the future?

Ways to listen:

• Listen on Soundcloud
• Subscribe for series on iTunes
• Download/Listen to MP3

With the rates of burnout and suicide in physicians at shocking levels, it’s important that we continue to talk about the satisfaction and mental health of physicians. There are systemic issues at hand that lead to the situation that we are in. In her article “Physician burnout is physician abuse” for kevinmd.com, Dr. Pamela Wible has said that, “Burnout is physical and mental collapse caused by overwork. So why are we blaming the victims? The fact is medical students and physicians are collapsing because they are suffering from acute on chronic abuse.”

There are systemic issues that lend itself to the state that we are in. Many physicians are over-worked and over-stressed. And, it’s not just the grisly 30-year career doctor who is tired that feels burnout, medical students report high levels of emotional exhaustion as well.

There are various numbers in studies but the most recent available studies show symptoms of burnout in 40-50 percent of respondents. It’s a shockingly high number, especially those on the outside looking in. Doctors often appear to have it all together and they can make a great living.

So what’s there to be dissatisfied about? It’s not that simple. Demands to see more patients, giving up less control of our lives and other factors can make what should be a rewarding profession very frustrating.

All this is true and we need to continue to talk about it and continue to search for systematic changes that can lessen the burden on physicians

But, I love my job.

I love going to work every day.

I love the deep relationships I have with my patients and their families.

I love the relationships I have with my staff.

I love the other roles I have carved out within my health care system - Cook Children’s in Fort Worth.

Are there difficulties and frustrations?

Sure. Nothing is perfect but currently, for me, the good far outweighs the bad. Because of this, I walk into and out of work feeling energized and excited about the challenges rather than exhausted.

I certainly don’t think it’s because of anything inherent in me that has allowed me to continue to love my job. Is it just the confluence of good circumstances? Good luck? A great system to work for? Yes, but I’ve also fought to change the system in ways that make life better for myself and others. Maybe I’m just too young and burn out is just around the corner? (Although studies show that people with much less experience than me are already burned out.)

Any of those are probably partially true. But, just like the difficulty in pinpointing the reason for burnout is tricky, pinpointing the reasons for physician satisfaction would be difficult as well.

This post floated through my head for months. I hesitated to put it to paper. How would it be received? Is it trite? Would it be slammed for minimizing the problems?

It’s possible it could be all of those things. I hope not. I hope instead that it is seen as encouragement for those out there that love their job and for medical students and trainees who hear the burnout statistics and wonder if they’ve chosen the right field.

Those of us who aren’t burned out need to listen to those who are.

Together we could take their concerns and our energy and make medicine a fulfilling career for compassionate and empathic people again.

I have been having conversations with some very energetic pediatric leaders and recording them for a new podcast. I hope that you’ll find some piece of their story encouraging: https://soundcloud.com/pediatricleadership

About the author

Justin Smith is a pediatrician and the Medical Advisor for Digital Health for Cook Children's in Ft. Worth, TX. He has an active community on both Facebook and Twitter as @TheDocSmitty and writes weekly for Cook Children's checkupnesroom.com. His interest in communications started when he realized that his parents were relying more on the internet for medical information. He believes that strategic use of social media and technology by pediatricians to connect with families can deepen their relationship and provide a new level of convenience for both of their busy lifestyles. Dr. Smith’s innovative pediatric clinic, a pediatric clinic “designed by you,” is set to open in Trophy Club in the Fall of 2016.

Navigating Transitions in Leadership

Frank McGehee, M.D., is a pediatrician in the Cook Children’s Magnolia clinic. He practices in an office that has roots in an 80-year tradition of providing excellent patient care to the children of Fort Worth. He has seen many changes in medicine, but still believes that the heart of pediatrics lies in his connection with families.

There are probably a bunch but what are a few of the big changes you have seen in pediatrics over your career?

How have you seen your role in leadership change over your career?

What do you see coming for you in leadership in the next few years?

Ways to listen:

Listen on Soundcloud

Subscribe for series on iTunes

Download/Listen to MP3

How do we break down silos for innovative design?

Ways to listen:

Listen on Soundcloud

Subscribe for series on iTunes

Download/Listen to MP3

Innovative ideas often require a team approach. It’s difficult to make changes that truly move the needle when you consider a problem from just one perspective. Broadening the team allows physicians to consider other ideas. These new ideas might just open up possibilities that they may have never thought of.

Dr. Marks is a pediatric neurologist with Cook Children’s in Fort Worth, Texas. He has a particular interest in movement disorders and has been involved in Cook Children’s effort to advance the use of deep brain stimulation in the pediatric population. His latest project has been the design and implementation of an innovative pediatric motion lab, which uses a multidisciplinary approach, and advanced technology to assess and develop plans for children, teens and young adults with movement disorders.

Questions to work through on today's topic:

• How are things going with the new lab?
• Going back to when it started. Walk us through some of the different professionals who had input on the design of the lab. How did each member of the team contribute to the big picture?
• What were some of the challenges associated with having a big/diverse team?
• What’s next on the horizon for the lab?
• What part of your work are you most proud of?
• What is the most important quality for a leader in pediatrics?

Quotes:

In order to develop a lab like this, it takes a lot of people who have a great deal of understanding about all the components.

The most important people are the physical therapists who run the lab every day.

The technology itself is just to tool but it does allow for better procedures and better outcomes.

I enjoy team building. I have done that throughout my career…This team was unique because there are constant moving pieces.

There is a huge need to study how childhood obesity affects movement…it should allow us to intervene and better understand what we are doing.

All the things that I have done have required teams.

Neurologists, orthopedists and neurosurgeons desperately need each other.

At the end of the day, we are all in this to help the patient and to make their life better.

I think it is important to surround yourself with good people…and allow them to be creative.

Re: Good ideas-This is not about ownership, it’s about outcome.

Before we see a kid from far away, we do a lot of pre-screening via video and questionnaires.

Links:

• Cook Children’s Motion Lab
• Cook Children’s Neurosciences
• Dr. Warren Marks
• Referring a patient

Why develop a center for clinical excellence for a rare disease?

Getting help for patients with rare diseases can often be a large struggle for families. Finding someone who understands and has the experience to properly diagnose and treat can lead to frustration for families. Often there is no place to go. For long standing issues, this can lead to bouncing to multiple doctors without resolution of symptoms.

For more acute issues, not having an expert available can cause significant morbidity, even mortality. Today on Pediatric Leadership: The New Medicine, we talk to one of our pediatric endocrinologists who set up a center for treating a rare disease, hyperinsulinism.

Dr. Thornton is a pediatric endocrinologist at Cook Children’s and is the founder of the Cook Children’s Hyperinsulinism Center which is one of only two centers in the country focused on hyperinsulinism. The website for the team lists endocrinologists, pediatric surgeons and many other medical specialities as well as coordination between education, social work and even Ralph Lauren, one of Cook Children’s play therapy dogs.

Questions to work through on the topic:

What is hyperinsulinism and when should a clinician expect it?

What motivated you to begin building a center for treating such a rare condition?

How did you get the institution on board? Who did you have to convince?

What were some of those first steps that got the ball rolling?

What has been the hardest step?

How can someone find out more about the center or refer a patient?

What part of your work are you most proud of?

What is the most important quality for a leader in pediatrics?

To listen:

Download on Soundcloud 

Subscribe for series on iTunes

Download/Listen to MP3

For more information:

• Cook Children’s Hyperinsulinism Center
• Dr. Paul Thornton
• Cook Children's Referral Page

What does servant leadership mean to you?

How has your thinking changed since you transitioned into this leadership role?

How do the principles of servant leadership serve you well as a leader in pediatric medicine?

How does an organization stick to their roots and culture when things are changing?

Quote:

“Sometimes we have a crucial conversation about something that needs to be changed in order to make you better at what you do, about the way you think about things. “- Dr. Britt Nelson

“Always with a heart of: I want something better for you and for the patient you are taking care of.” – Dr. Britt Nelson

“Picture the child in front of you who needs what you are talking about. Will you go to war for that?” – Dr. Britt Nelson

Ways to listen:

Listen on Soundcloud

Subscribe for series on iTunes

Download/Listen to MP3

Listen to episode 2 of Cook Children's podcast - Pediatric Leadership: The New Medicine.

Questions addressed:

1. Have you noticed differences in leading in or advancing pediatric issues?
2. What are some particular challenges in pediatric leadership?
3. Moving forward, what are some particular issues in pediatrics where we need strong leaders to step in and lead?

Important links:

Texas Pediatric Society

Texas Medical Association

“Future pediatric leaders are waiting to step forward and it’s a matter of responding to the tap on the shoulder, the encouragement of a colleague to get involved.” – Jason Terk, M.D.

Jason Terk, MD-Cook Children’s Keller

Read Dr. Terk’s article about low HPV vaccination rates-Epic fail

Subscribe for series on iTunes

Download/Listen to MP3

Listen to episode 1 here. 

Our guest Mary Uhl-Bien is the BNSF Endowed Professor of Leadership at the Texas Christian University Neeley School of Business. She teaches in the Advancing Healthcare Leadership class which is a combined initiative between Cook Children’s and TCU. Participating in the class are about 30 physicians from throughout the Cook Children’s system including both specialists and primary care physicians. The goal is to establish a culture of strong leaders throughout the system so that we can work together to better serve our patients. Listen to episode 1 of Cook Children's new podcast - Pediatric Leadership:The New Medicine.

Listen on iTunes

Download/Listen to MP3

“People told me everybody wants to work in pediatrics until you have kids,” Dr. Honeycutt said. “They said, ‘Then you won’t want to work on kids any longer. It will be too much.’ But it was the exact opposite. When I had my own kids I realized even more this was what I wanted. I wanted to help kids like my own. It gave me much more empathy. It made it much easier to take care of them. In my line of work, I’m asking parents to hand their kids off to me and take care of them. They entrust their kids’ lives in my hands and I understand that.”

As a teenager, Dr. Honeycutt saw first-hand the role a surgeon can play in helping a family after a traumatic event.

One afternoon in his hometown of Paragould, Ark., while “horsing around” after football practice, the then 15 year old broke his neck.

A surgical scar remains on Dr. Honeycutt’s neck and so do the memories of his time in the hospital. He describes the scene at the time like what you would see in a bad TV movie as he was placed in traction.

As a patient, he saw physicians changing patient’s lives and making them better. The straight A student now knew what he wanted to be when he grew up.

Then during medical school, Dr. Honeycutt found his specialty.

“When I was doing my neurosurgery rotation, it all just clicked,” he said. “It clearly had all the parts I really enjoyed. I liked being a surgeon. I liked the neurosciences. I liked the workings of the brain. I just loved everything about it.”

While Dr. Honeycutt is now an experienced neurosurgeon, he still strives to be at the forefront of the latest technology and technique. Working on a child’s brain requires not only a steady hand, but the latest in state-of the-art technology.

Dr. Honeycutt and his fellow neurosurgeons use their expertise to perform the most intricate and delicate surgeries, such as deep brain stimulation, iMRI-guided surgery and laser ablation surgery.

“It’s an exciting time right now because we are learning so much about the brain and how it works and at the same time our technology continues to improve with micro instruments, with robotics and computers,” Dr. Honeycutt said. “If I don’t keep learning and keep up with what’s going on, I can get so far behind, rather quickly. One of the great things about Cook Children’s is we are always on the leading edge.”

Another aspect of Cook Children’s that Dr. Honeycutt said makes it unique is the relationship between the neurologists and the neurosciences. As surprising as it may be, Dr. Honeycutt says it’s rare for other hospitals to have the neurologists and neurosurgeons share a clinic together. He calls the working relationship between everyone involved in the Department of Neurosciences at Cook Children’s unbelievable. A lot of it has to do with that communication and the skill of the surgeons and physicians. They push each other constantly to do better.

At Cook Children’s, the neurologists and neurosurgeons can give each other immediate feedback on a patient. “You look at our situation and say, ‘Why doesn’t everyone do this?’ It’s so silly that people don’t do this everywhere,” Dr. Honeycutt said. “It’s one of the things that makes this place so special.”

A new study in Nature Medicine started the process of trying to answer this exact question

You might be thinking, “What the?” But there is some logic to this:

1. Babies born via C-section have been shown to have slightly higher risk of some diseases (obesity, allergies and asthma for example).
2. We are beginning to understand how the makeup of bacteria in our intestines affects many different diseases.
3. Babies born via C-section are not exposed to the normal bacteria that line the birth canal

The question then would need to be asked: Can you reverse this process by exposing babies to the vaginal flora after they were born via C-section? This small pilot study of four babies seems to suggest that you can.

The process: Within in the first two minutes after birth, take a piece of gauze, which has been placed in the vagina. Swab the babies mouth, forehead and the rest of their body. Test these babies to see what bacteria are present in their bodies.

The answer: Those C-section babies who were swabbed with vaginal secretion showed that the bacteria they carried more closely resembled babies who were delivered vaginally.

This was a small study, which needs to be repeated on a larger scale and there are still many questions to answered:

• Does changing the bacteria that a baby carries actually help to prevent diseases?
• How do we make sure this procedure is safe? How do we screen moms to make sure there is no added risk to the baby?
• What is the best means of transferring the bacteria? Is there a better way that what was done in this study?

The role that the bacteria we carry play in our health is gaining interest. I’m sure that we will continue to see studies like this and many others in this area. Stay tuned.

Why form a Cybersecurity Task Force?

Back in December, The Cybersecurity Information Sharing Act of 2015 was included in the Omnibus spending package that funds the federal government for 2016. One provision in the law requires the HHS to form a task force of experts in government and the private sector to come up with recommendations on ways to secure the health care industry. Besides Meadows, the task force is comprised of leaders from Kaiser Permanente, Merck & Co., Centers for Medicare and Medicaid Services and Homeland Security, along with others. 

“Cyber threats continue to increase on a consistent basis but we must continue to share information to provide high quality, safe patient care. We must find better ways to do this and maintain the security of the information," said Meadows. “Part of my role as CIO, is to proactively engage leadership on the urgency and seriousness of these issues”

Healthcare data can be used for various criminal purposes, including identity theft, fraud, and disruption of hospital systems. Meadows states, “If companies as large as Target and Anthem can be susceptible to security breaches proves there needs to be more focus on cybersecurity, especially in healthcare.”

Another concern is the threat of ransom attacks. Just this week, Methodist Hospital in Henderson, Ky. announced it’s operating in an “internal state of emergency” after a ransomware attack encrypted all of the hospitals files, holding them hostage until the hospital agrees to pay. This incident comes just weeks after a California hospital paid $17,000 in a similar attack.

“Ransom attacks are becoming more and more common and it’s a big concern. Whether these hackers are after money or private information, we need to be able to protect healthcare data and ensure proper education is provided to our staff to prevent these events from occurring,” Meadows said.

What’s on the agenda?

The task force will meet in person four times over the next year, in addition to holding regular conference calls. Meadows says they will be talking about a range of issues.

The task force has been established to:

1. Analyze how other industries have implemented strategies and safeguards for addressing cybersecurity threats within their respective industries;
2. Analyze challenges and barriers private entities (excluding state and federal governments) in the healthcare industry face securing themselves against cyber-attacks.
3. Review challenges that covered entities and business associates face in securing networked medical devices and other software or systems that connect to an electronic health record (EHR)
4. Provide HHS with information to disseminate to healthcare industry stakeholders of all sizes for purposes of improving their preparedness for and response to cybersecurity threats affecting the industry
5. Establish a plan for implementing cyber threat information sharing so that the Federal Government and healthcare industry stakeholders may in real time share actionable cyber threat indicators and defensive measures
6. Report to appropriate Congressional Committees on the findings and recommendations of the task force

The Cybersecurity Task Force will report their findings and recommendations next year.

We have said this before (many times), but a new study shows just how true this statement is.

A recent study published in the Journal of the American Medical Association (JAMA) looked at the combined data of 18 published measles studies on several measles and pertussis outbreaks.

Reviewing a total of 1,416 measles cases, 56 percent had no history of measles vaccination. This is way higher than you might expect given that most still choose to have their child vaccinated.

Still the study states that “a substantial proportion of the US measles cases in the era after elimination were intentionally unvaccinated.”

Intentionally unvaccinated?

As a pediatrician this concerns me. As a dad, it terrifies me.

In one outbreak the risk of contracting measles was 35 times more likely when parents had skipped the shots. A child who isn’t vaccinated is much more likely to spread measles than a vaccinated child.

We know that the pertussis vaccine is not working as well as we would like. The protection from the vaccine is falling off quickly. However, this study showed that despite this, vaccine exemptions continue to be a factor in the spread of pertussis outbreaks. Somewhere around 1 out of 3 kids who got pertussis during these outbreaks was unvaccinated.

Why are children not getting the vaccines? Not all studies had the information necessary to say. But, for those that did, most families skipped the vaccines for personal or religious reasons (70 percent for measles, 60-90 percent for pertussis).

This is further proof to something we’ve suspected for some time. Having even small pockets of unvaccinated children increases the risk to the whole community.

Each of these families who chose not to vaccinate gamble on 3 issues:

1.Their child would not be exposed to the disease (banking on herd immunity whether they know it or not).

2.If their child was exposed, that they would not contract the disease.

3.If their child contracted the disease, they would not suffer serious consequences.

These are consequences I’m not willing to gamble on.

In the case of measles, consequences could mean pneumonia, hospitalization and, later in life, neurologic complications.

In the case of pertussis, consequences could mean painful coughing, broken ribs and, in the very young, death.

This is further proof to something we’ve suspected for some time. Having even small pockets of unvaccinated children increases the risk to the whole community.

Obesity? That's one.

Car accidents? That's a big risk too.

But would you guess the number one issue is asthma?

In Tarrant County, 19.5 percent of children suffer from asthma, according to data gathered in a survey sent to parents by The Center for Children's Health led by Cook Children's. The Community-wide Children's Health Assessment and Planning Survey (CCHAPS) was completed by more than 8,600 parents in Tarrant, Denton, Hood, Wise, Parker and Johnson counties.

"We questioned parents on everything from how often their child is buckled in properly to how many grocery stores in their neighborhood sell fresh fruits and vegetables," said Larry Tubb, senior vice president of the Center for Children’s Health. "The information we are gathering is extremely valuable when it comes to measuring the overall health of children in our region."

Overwhelmingly, parents in Tarrant County (and all of the surveyed counties) reported their children are dealing with asthma. In fact, children in this area ages 6-9 are three times more likely to have asthma than children living in other parts of Texas. While we don't know why the numbers are so high, we do know people with asthma have varying triggers, and what affects one person will not necessarily affect another. Those triggers include, but are not limited to, cigarette smoke, indoor and outdoor mold, pet dander, air pollution, dust mites, cockroaches, pollen, smoke and strong odors.

The second biggest health issue on parents minds is obesity, with 17.8 percent reporting concerns about their child's weight, activity level and access to healthy foods.

Accidental injuries rings in third. In Tarrant County, 11.9 percent of parents reported their children had been injured and required medical care. Those injuries range from car and ATV-related incidents to drowning, bicycle falls and crashes.

The fourth issue on the list is a lack of dental care for children. Parents reported 9.7 percent of children either didn't see a dentist regularly, didn't brush their teeth enough or some even reported their child didn't have their own toothbrush.

Finally, mental illness is the fifth biggest issue concerning parents in Tarrant County. Behavioral and emotional development is on the minds of 8.5 percent of respondents. Many reported their children have suffered sleep problems, self-esteem issues or have tried to harm themselves.

The survey used to gather this data is part of a Cook Children's initiative to improve the health and well-being of every child in our six-county region by 2020. This initiative launched in 2009 with the very first survey of its kind sent to parents. Since then, the surveys have been sent out every three years.

"The information provided by parents in our community is available on-line and being used by a host of organizations, including Cook Children’s, to build programs and services. There isn’t one perfect answer, but, together we are making solid progress in improving the health of the children in our community by putting the child and family at the center of our planning," said Tubb.

About The Center for Children's Health

The Center for Children's Health, led by Cook Children's, is home to the Community-wide Children's Health Assessment & Planning Survey (CCHAPS), Community Health Outreach and Community Health Research. The center's goal is to create aligned collaborations that will allow us to make our North Texas region one of the healthiest places to raise a child.

Not a day goes by that Scott Perry, M.D., doesn’t hear that question from parents desperate to help their child. Dr. Perry says he probably discusses the pros and cons of marijuana use for intractable epilepsy at least three or four times a day.

Those questions may increase with the news an experimental cannabis-based drug has successfully treated children with a rare form of severe epilepsy, known as Dravet syndrome broke today.

GW Pharmaceuticals announced positive results from a 120-patient trial on Monday, March 14, 2016. The study shows that patients who took the drug known as Epidiolex saw a monthly reduction of convulsive seizures of 39 percent, compared to a reduction of 13 percent in patients on placebo.

Cook Children’s did not participate in this particular study, but Dr. Perry is leading a team studying the same drug with the same company in three additional trials of Dravet syndrome and Lennox Gastaut Syndrome.

“Many parents of children with epilepsy are interested in considering marijuana, but are afraid of the response they will get from their doctor when they ask,” said Dr. Perry, medical director of the Epilepsy Monitoring Unit and Genetic Epilepsy Clinic at Cook Children’s. “While providers are increasingly more open to the idea that marijuana has some place in medicine, many others continue to regard it as nothing more than an illegal drug with no health benefit.”

Cook Children’s is involved in two studies that examine cannabidiol (CBD) as a treatment for severe cases of epilepsy. The studies, the largest of its kind, are being conducted nationwide in an effort to gather data to see if CBD is an effective form of treatment for two uncontrollable forms of epilepsy – Lennox-Gastaut syndrome and Dravet syndrome.

For Dr. Perry, taking part in a study of this magnitude is the conclusion of more than a decade of his life’s work. It’s also been a passion of his, testifying in front of politicians and lawmakers. Not serving so much as an advocate for CBD, but more so as a scientist and caregiver. He wants to know is this works.

“Without doubt, there is a lot we don’t yet know about how marijuana can be used as a medical treatment, which diseases is it best for, at what doses, at what risks, etc.,” Dr. Perry said. “But to simply ignore the potential health benefits of this plant because of its popular use as a psychoactive drug is short-sighted.”

The experimental drug

The use of an experimental drug isn’t an uncommon practice at most major hospitals, including at Cook Children’s.

An experimental drug is a substance which may be useful to diagnose or treat disease or preserve or enhance health, but has not yet been approved by the U.S. Food and Drug Administration for the specific purpose of treating a patient.

“The drug might or might not be approved for one or a number of conditions, but it becomes ‘experimental’ when used to systematically investigate treatment for an unapproved condition,” said James Marshall, M.D.,Chief Research Officer at Cook Children’s.

The experimental drugs are used, most often, in two situations at Cook Children’s.

Most commonly, experimental drugs are used during the course of an investigation of the drug’s safety, effectiveness and/or how it impacts a patient’s system and well-being. During this time, the drugs are administered under careful supervision and the children are monitored at all times.

Another important, if not as common, use of experimental drugs occurs at hospitals such as Cook Children’s. Once a drug has been approved by the U.S. FDA, experimental drugs, known to be safe and effective in adults, may be used to help children under specific guidelines. This occasion is known as “expanded access” or “compassionate use.”

“In this case, a physician believes that the experimental drug may help his or her patient’s condition for which the drug has not been investigated or approved, but the data seems to indicate a chance it will benefit the child,” Dr. Marshall said.

The data obtained from the use of experimental drugs can be useful to future patients as doctors can see how beneficial they are the next time they are treating a patient with a similar condition.

At Cook Children’s, children participate voluntarily in all experimental drug investigation. Patients and their families, particularly in the case of minor children, must volunteer to participate in any experimental investigation through a process called, “informed consent.”

Informed consent for children is regulated heavily by the U.S. and international governments. This type of consent is managed by a local board concerned only for the safety of research subjects, and far more comprehensive than the normal treatment consent process. Informed Consent for children has several key elements:

• Education by the investigator and his/her team regarding all aspects of the research.
• Informed consent or actually signing a legal document by a minor child’s parent or legally authorized representative.
• Assent or documenting that a minor child understands and agrees to participation, and a continuous, open and welcome ongoing conversation between the participant/family and the investigational team to assure understanding through all phases of the research.

The initial consent/assent process can take several hours, and investigators never really consider the conversation to be closed. Patients and their families often learn more about their condition during the consent/assent process than they would by receiving treatment only. Patients and families can decide to stop participation even before the experimental drug is administered.

However, many patient families see the importance of participating in these experimental drugs and the benefit it may bring to not only their child, but to patients in the future.

“At Cook Children’s, we believe that all children deserve the best, evidence-based treatment strategies available to manage their illnesses and maintain good health,” Dr. Marshall said. “Cook Children’s patients have the opportunity to contribute to the health of other children through safe and ethical clinical research. We treasure the fact that clinical research is the essence of people voluntarily caring for the future of mankind.”

Why a study of the use of Cannabidiol is needed

To prove a therapy is effective the following is needed:

• Controlled trials - studies where all the patients enrolled have similar conditions and in the process eliminate many variables that may affect the outcome other than use of the drug.
• Blinded studies - studies where neither the doctor nor the patient know what treatment they are on, to avoid bias.
• Placebo controls - some patients get the medicine and some get a “sugar pill” to make sure the improvement in seizures is not related to chance alone.

While early reports from families suggest CBD is well tolerated in most patients, standardized evaluation of side effects and long-term data will be very important. There is considerable concern about what impact CBD may have on the developing brain of a child and no trials in children have been sufficient yet to answer this question.

Finally, there is not yet adequate standardization of CBD production. Numerous states have CBD laws, all slightly different in their requirements, their oversight, and the conditions which can be legally treated.

“When you get a drug at the pharmacy, it is required by law to have certain standard properties to insure that each pill is similar to the next,” Dr. Perry said. “Families are often concerned about getting generic over brand name drugs – but even generic drugs have rules to insure they are very similar to their brand-name equivalent. Marijuana plants may have varied amounts of CBD and THC depending on the plant species, the growing conditions, and the extraction of the medication from the plant.”

Dr. Perry said the take home point is not whether or not CBD is a treatment for epilepsy, but is it ready to be used just as any other seizure medication now. Adequate evidence suggest that it warrants further investigation as a therapy, but there is inadequate evidence to wholeheartedly support it for more common use until the research is done.

The misconceptions of medical marijuana

The first question people often ask is “will it get my kid high?” Marijuana plants contain a number of substances which may hold potential to treat disease. There are two main chemicals in marijuana – the first and best known is THC. THC is the psychoactive part of marijuana – or the part that makes you “high.”

Cannabidiol (CBD) is another component and the one most people are interested in as a treatment for epilepsy. CBD has no psychoactive properties, so it doesn’t produce a “high.”

The second question is often “won’t smoking marijuana be bad for my child?” CBD is not administered by children smoking. It is typically formulated into an oil based liquid, so it can be given by mouth.

The next logical question is whether there is any evidence that CBD is effective at treating epilepsy – and this is where the research that Dr. Perry and his team are participating in comes into play.

“While the medical community is encouraged by the favorable reports from patients using CBD in other states, we understand that this type of ‘self-reported’ data is not adequate to prove a treatment works,” he said. “Often when a child improves with a medical treatment, the family will sing the praises of the miracle medication they found. We rarely ever hear from those people that tried yet another treatment that failed – as they simply have moved on looking for another potential cure. Therefore, while many people have reported success with CBD, we don’t know how many have failed using the same treatment.”

In a study that was released early online from the journal Pediatrics, researchers looked at the percentage of girls aged 14-19 years were infected with the types of human papillomavirus (HPV) contained in the HPV vaccine in the years 2003-2006 and compared that to the percentage of 14-19 year old girls infected with the types of human papillomavirus (HPV) contained in the HPV vaccine in the years 2009-2012.

They found that the rate of infection in the years prior to routine vaccination in this group of girls was 11.5 percent. That percentage dropped to 4.3 percent in the years following routine recommendation of a vaccine. This is a rather remarkable finding given the relatively small numbers of girls who had received the full 3-dose series of the HPV vaccine.

It further illustrates how well this vaccine protects against such an important infection that can cause cancer in later years. This evidence of early success will likely lead to even more important measures of success with decreased numbers of women having abnormal pap smears that indicate cervical dysplasia and ultimately decreased numbers of cancers.

Imagine how much better it will be when we improve the numbers of teens getting this important vaccine!

Jason V. Terk, M.D.

1. What Is Turner Syndrome?

Turner syndrome, named after one of the doctors who first described it, is a genetic condition in which all or some portion of the X chromosome is missing. The lack of vitals genes found on the X chromosome affects multiple organs in the body leading to the medical problems seen in girls with Turner syndrome.

The loss of X chromosome genes happens very early in fetal life. In fact, the pregnancy of many babies with Turner syndrome ends in miscarriage. The condition is one of the most common genetic conditions with an estimated 1 out every 2,500 girls born with Turner syndrome.

2. What Health Problems Do Turner Syndrome Girls Have?

The severity of health problems in Turner syndrome is variable and depends at least in part on the loss of gene activity from the missing X chromosome. Many pediatric subspecialists may be involved in the care of Turner syndrome depending on the number and severity of health problems.

Heart problems in particular can be life-threatening and may require surgery early in life. Lifelong monitoring of heart health is necessary as heart problems are the most common cause of early death in Turner syndrome.

There are two primary health problems which need pediatric endocrine care.

· Short Stature

· Ovarian Failure

Short stature is a near constant problem seen in almost 100 percent of girls with Turner syndrome. I, and many other pediatric endocrinologists, use growth hormone treatment in girls with Turner syndrome. Prompt diagnosis is necessary and earlier diagnosis is essential. Prior to the use of growth hormone treatment, the average height for Turner syndrome girls was 4’8”.

The ovaries fail to work properly in most girls with Turner syndrome resulting in inability to go through puberty. Pediatric endocrinologists often start estrogen treatment and monitor puberty progress. Women with Turner syndrome need lifelong hormone replacement therapy. The majority aren’t able to have children without assisted reproduction.

Many other health problems can occur in Turner syndrome, and lifelong medical care is needed to check for these problems and provide proper treatment.

3. How is the Diagnosis Made?

Some families learn about the diagnosis of Turner syndrome in their daughter prior to birth if amniocentesis is done. However, most girls with Turner syndrome are diagnosed after birth.

The process of diagnosing Turner syndrome begins with a careful medical history. Unexplained short stature or delayed puberty may be the first clues in the diagnosis of Turner syndrome.

Blood testing to check chromosomes is necessary to make a definite diagnosis.

4. What else do I need to know ?

I hope this article helps in better understanding Turner syndrome. An early medical check in a girl with signs of Turner syndrome such as short stature or delayed puberty may be the first step in diagnosis.

Along with his medical degree, Dr. Pilgrim has completed a combined internal medicine and pediatrics residency, followed by pediatric chief residency at Maimonides Medical Center in Brooklyn, N.Y. His fellowship training in pediatric cardiology was completed at Cohen Children’s Medical Center with the North Shore-Long Island Jewish Health System.

Impressive indeed, but long before the tedious hours of study and hard work, Dr. Pilgrim’s career path began to take shape at a very young age. See, Dr. Pilgrim grew up with a congenital heart disease patient. His younger sister, Stephanie, was born with congenital heart disease, and she has the scar on her chest to prove it! Congenital heart defects represent the most common birth defect in children and occur in approximately 1 in every 100 children born.

Today, Stephanie is 35 years old, married and has kids, looking much like the patients you would see in the waiting room at Cook Children’s Adult Congenital Heart Disease clinic. In fact, conservative estimates predict that there are nearly 1.3 million adults with congenital heart disease in the United States with about 1 in 150 adults being affected. There are now far more adults than children with congenital heart disease in the US.

It makes perfect sense for Dr. Pilgrim to make this his career focus, right? Well, maybe, for everyone but Dr. Pilgrim. At least, it took him a little while to realize treating ACHD patients was his calling. ““There was a great deal of angst in choosing my career path” he said, chuckling. “I really wanted to be able to apply my internal medicine training to a pediatric subspecialty career path that would allow me to assist in the transition of adolescent and young adult patients to the adult medical arena. I was really drawn to the world of intensive care early on in my residency training, but I loved building long term rapport with the patients and their families in the outpatient setting as well.”

Toward the latter half of his medicine-pediatrics residency, Dr. Pilgrim finally latched on to the idea of pursuing a career in adult congenital cardiology. “Congenital heart disease was fascinating to me in medical school. I was drawn to the complexity and singular nature of each defect and the associated repair. As time progressed, I learned of the growing need for ACHD specialists for a large, vulnerable population with a noted care gap. This field has proven to be the perfect fit for me.”

Once he decided this was the right direction for him, Dr. Pilgrim has never looked back. After all, these are the patients he can identify with like no other. He grew up with one.

“My sister grew up with a scar on her chest. As kids, we called it her “zipper”. We, like many patients today, said, ‘It’s fixed! There’s nothing more to be done’. However, in many cases that is simply not true. Surgery is rarely a cure and most congenital heart defect survivors need lifelong specialized care.”

But Dr. Pilgrim and his colleagues know that many adolescent and young adult patients don’t realize the severity of their heart problems, or at the very least, that they need continued care. Most patients were diagnosed in infancy and don’t remember their surgical repair. Many have dropped out of care for a variety of reasons. “Much of my job revolves around providing education to the patient about their heart disease so that they can develop autonomy and learn to advocate for themselves as they grow older.”

Dr. Pilgrim explains that adults with congenital heart disease remain at risk for long term complications including heart failure, abnormal heart rhythms, pulmonary hypertension and premature cardiovascular death. On top of that, adult onset disease such as hypertension, obesity, diabetes and acquired cardiac disease begin to interplay with their unique physiology. Many ACHD patients will require additional surgical intervention or added medications, even if they had a successful repair as a child. This underscores the need for specialized care. However, fewer than 10% of all adult congenital heart disease patients receive the recommended care in a specialized center.

Congenital heart disease has dramatically changed the landscape of another field in cardiovascular medicine, that of pregnancy and heart disease. Rheumatic heart disease has been replaced by congenital heart disease as the most common heart disease in pregnant women in the US.

“A lot of women show up to the clinic, just like my sister, wanting to become pregnant and wanting to know the risks to themselves or the potential risks to the fetus,” Dr. Pilgrim said. “At Cook Children’s ACHD program, we provide women of child bearing potential with important education regarding birth control options, pre-pregnancy counselling and risk assessment. Women with congenital heart disease who are already pregnant are followed in conjunction with the obstetrician, maternal fetal medicine, fetal cardiology and anesthesia teams with a coordinated delivery plan. We can counsel and treat the woman with the heart problem, while also taking any necessary precautions for the baby after birth.”

But Dr. Pilgrim stresses that there is plenty of optimism for the ACHD patient to live a full life despite their heart disease.

“Too often we find that these individuals become defined by what their disease is rather than who they are as a person” Dr. Pilgrim said. “In some ways their defect may limit some of the things they can do, but it shouldn’t limit their happiness or ability to live a fulfilled life, with the proper treatment. I think that’s the most optimistic message that I can give patients in the community. Through education and proper surveillance in a specialized ACHD center, you can live an active and healthy lifestyle.”

Dr. Pilgrim speaks from the example of how well his sister is thriving as an adult with ACHD. Especially, with the right program, like you will find at Cook Children’s, caring for you.

More about Scott Pilgrim, M.D.

• Dr. Pilgrim spends his free time with his wife and three beautiful children.
• He is particularly involved in musical pursuits, having performed with the 6-time Grammy Award Winning Brooklyn Tabernacle Choir for 12 years.
• He is also a sports fanatic, enjoying baseball, football, basketball and anything else involving healthy competition.
• Yes he knows about the movies and graphic novel, Scott Pilgrim vs. The World.

The ACHD program at Cook Children's

At Cook Children's, we care for the needs of patients with congenital heart disease from the moment they're born, and we stay with them all the way into adulthood. Our Adult Congenital Heart Disease (ACHD),  is one of only a few formal programs nationwide to offer inpatient and outpatient care for teen and adult patients with congenital heart disease, because adulthood, like childhood, should be as simple as possible.