August 26, 2014

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It wasn’t a typical Monday morning for Dr. Timothy Lotze, a neurologist at Texas Children’s. Besides making his usual hospital rounds to see patients, Lotze paid a visit to 14-year old Joseph Garza’s room. But, this visit was extra special.

Trading in his white lab coat for a comfy red T-shirt, Lotze participated in the Ice Bucket Challenge to help raise money and awareness for amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that severely impacts a person’s ability to move.

Lotze accepted the challenge from Texas Children’s Muscular Dystrophy Association representative Dalia Deleon on behalf of Garza, who suffers from an extremely rare form of pediatric ALS.

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“I am so grateful to Dr. Lotze for taking on this challenge to help raise awareness for ALS,” said Lorrie Garza, Joseph’s mom. “Hopefully, they’ll find a cure so no other family or child has to go through this terrible disease.”

A year before Garza’s diagnosis, Lorrie noticed her son was having trouble lifting his arms and began walking with a limp. His condition grew worse, but doctors in his hometown of Brownsville weren’t sure what type of neurological disorder he had. Once Garza was transferred to Texas Children’s, he and his family met with Dr. Lotze, who diagnosed Garza with ALS in May of this year.

While ALS primarily affects adults, there are children who suffer from this debilitating disease that attacks nerve cells in the brain and spinal cord which control voluntary muscle movement. Patients with ALS progressively lose their ability to eat, speak, walk and eventually breathe.

“Since the disease impacts voluntary muscle action, patients in the later stages of ALS may become completely paralyzed,” said Lotze. “It’s important for us to continue to support research and raise community awareness about ALS so we can find a cure for this horrible disease and improve the quality of life for these patients.”

That’s exactly what Texas Children’s researchers Dr. Hugo Bellen and his team strive to accomplish. In their laboratory at the Jan and Duncan Neurological Research Institute at Texas Children’s and Baylor College of Medicine, they are examining the role of genes in ALS to help find ways to suppress degeneration and improve a patient’s functionality.

“A subset of ALS patients have mutations in a gene called VapB,” said Bellen. “We are trying to understand the specific role of this gene by studying fly and mouse models of ALS, caused by mutations in this gene.”

Bellen and his team have discovered that the VapB protein circulates in the blood and functions as a hormone. It binds to receptors on muscle cells to control the function of the muscle mitochondria, the cell’s powerhouse. In the mutants, the muscle mitochondria do not function properly anymore, and this in turn affects the function of the neurons that innervate the muscles, ultimately causing these neurons to die.

“Although the causes of ALS are not well understood, we are making significant progress on how the disease may develop, which could lead to better therapies or possibly a cure in the future,” said Bellen.

As for Garza, his mom says he’s not giving up hope. “He’s already told me he’s going to fight,” said Lorrie. “And I tell Joseph, “We will fight together.”

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Texas Children’s President and CEO Mark A. Wallace took a fun break to raise awareness for a very serious cause on Thursday. Watch him take the ALS ice bucket challenge and see who he’s called out.

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August Recess has historically been a time for members of Congress to spend time in their home states meeting with constituents. Taking advantage of this time at home, Congressmen Pete Olson and Michael Burgess made a trip to Texas Children’s to visit with leaders in the fields of pediatrics and obstetrics. The pair visited with Physician-in-Chief Dr. Mark W. Kline, Chief Financial Officer Ben Melson, OBGYN-in-Chief Dr. Michael Belfort, Chief of Neonatology Dr. Stephen Welty, and Director of Texas Children’s Simulation Center Dr. Jennifer Arnold among many others. They were accompanied by Director of Government Relations Rosie Valadez-McStay. The purpose of the visit was to bring awareness to how our hospital functions and what can be done legislatively to help organizations like ours continue to advance care for children and women.

“It’s incredibly important to have these legislators get a behind-the-scenes tour of how a hospital as large as ours operates and see first-hand how health policies and programs affect us and our patients,” said Valadez-McStay. “Specifically, we want our elected representatives to think of us as subject matter experts in Medicaid – to reach out to us when they are considering legislation or policy reforms – as any change in health policy could transform the lives of the sickest pediatric patients across the country and how children’s hospitals and health care professionals care for them.”

During the visit, the two were able to tour several areas in the Pavilion including the Maternal Fetal Medicine Clinic, the Women’s Intensive Care Unit and the Neonatal Intensive Care Unit. The NICU has some of the hospital’s youngest medically complex cases. These are the babies who could be affected by HR 4930, the Advancing Care for Exceptional Kids Act of 2014 (ACE Kids). The legislation, which was proposed last month, establishes pediatric centers of excellence through a federal designation. These Centers of Excellence would become the medical network for children with medical complexities on Medicaid. These hospitals would communicate and share information in order to allow for seamless care of these complex cases across state lines. For example, if a child in Louisiana with a medical complexity needs the care that is only available through specialists at Texas Children’s, once the legislation is passed, that child will be able to cross state lines to receive that care without wondering how their Medicaid will be affected. The hospital in Louisiana will also be able to better communicate with Texas Children’s to make sure none of the tests are unnecessarily duplicated and that when the patient returns home that care is coordinated and is tracked for health outcomes and quality.

Other August visitors included the staff of Senator John Cornyn, staff from the office of US Congressmen John Culberson and Ted Poe. Off-site visits by Texas Children’s government relations staff included meetings with Congressmen Gene Green and Kevin Brady.

Take action:
The ACE Kids Act has 34 cosponsors so far and is truly bi-partisan with 17 Republicans and 17 Democrats lending their support. Help us get more of our Congressional delegation to sign-on to the bill by joining in the Children’s Hospital Association’s social media Thunderclap – an echo of social media postings by all the children’s hospital members of CHA, urging our representative in the US House of Representatives to cosponsor the bill once they return from summer recess on September. 8. Sign up today at http://bit.ly/ACEKidsThunder with your Facebook, Twitter or Tumblr account to ensure that we reach our hospital goal and our message goes out as loudly as possible on September 8 at noon.

Click here to read more about the ACE Kids Act and how Dr. Jennifer Arnold used her voice to Speak Now for Kids. (internal link)

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Reaching puberty is a rite of passage that we’ve all been through, but these days children are entering puberty at younger ages – like 7, 8, or 9 years old – compared to previous generations. It’s a trend that has many health providers and parents scratching their heads.

Precocious puberty, or early puberty, is one of several topics that Dr. Jennifer Dietrich and her colleagues explore in their newly published book titled, “Female Puberty: A Comprehensive Guide for Clinicians.”

“Things have changed compared to 100 years ago,” said Dr. Jennifer Dietrich, chief of pediatric and adolescent gynecology at Texas Children’s. “Our nutrition today is different than it was back then. There are environmental factors, including childhood obesity, that potentially could impact the age at which children reach puberty. Our book explores all of these topics.”

The 159-page comprehensive manual is categorized into three main areas – normal, early and delayed puberty – and covers a spectrum of puberty-related topics and up-to-date clinical recommendations to help physicians better care for their patients, while making this journey through adolescence easier for moms and their daughters.

“Female Puberty: A Comprehensive Guide for Clinicians” examines case studies and current data trends on puberty, the potential impact of environmental factors and childhood body weight on the age of puberty, and whether the age of puberty is changing or is simply being measured and diagnosed differently.

Dietrich says it took years of rigorous research, intensive writing and multiple rounds of edits to bring this project to fruition. She and her colleagues – many of whom completed their fellowship in pediatric and adolescent gynecology at Baylor College of Medicine – were each assigned a chapter to write in six months before all the material was submitted to Springer for final approval.

“I am glad that Springer published our book,” said Dietrich. “I believe this will be an invaluable resource tool for all clinicians who specialize in female reproductive health including obstetrician gynecologists, reproductive endocrine specialists, pediatricians, family practitioners and allied health professionals.”

Dietrich’s book will be highlighted at upcoming conferences of The American Society for Reproductive Medicine, North American Society for Reproductive Medicine, North American Society for Pediatric and Adolescent Gynecology, and The American College of Obstetrics and Gynecology.

If you’re interested in purchasing the book online, click here for more information.

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For kids with allergies, a trace amount of a food substance can trigger deadly anaphylaxis within minutes of ingestion – the fear of which can be life altering for many families.

Researchers at Texas Children’s Hospital are looking to give hope to some of these families through a landmark peanut immunotherapy trial. Using a process known as desensitization where patients swallow tiny, increasing amounts of peanut over time, Dr. Carla Davis, a specialist in the Allergy and Immunology Section of the Department of Pediatrics at Baylor College of Medicine, will begin a trial this month that treats children with peanut allergy to help lower the risk of severe allergic reactions and eventually cause them to lose their allergy to peanuts. The study also will determine the mechanism by which the body develops tolerance, as well as measure the effect of viral infections on the ability of peanut allergic children to take peanut flour.

In Europe, a recent oral immunization trail (OIT) showed promise, and both the Consortium for Food Allergy Research and Stanford University are conducting studies in the U.S. But so far desensitization is not the standard of care, and no study has determined the mechanism by which the body develops tolerance. Davis’ plan to monitor how and why the immunotherapy works is revolutionary, and could help allergists ID patients who are good candidates for immunotherapy.

“No other immunotherapy trial in this area has used the state of the art laboratory testing of immune cells to improve the process of desensitization,” said Davis. “We believe the information gained from this trial will help make the process of desensitization faster and more efficient in the future.”

Davis and her team, in collaboration with Dr. Jordan Orange’s Center for Human Immunobiology and the Center for Cell and Gene Therapy, will be evaluating more than 25 markers of cells called lymphocytes, which are central to controlling immune responses. Patients will have blood drawn, and these markers will be evaluated by a process called flow cytometry. The markers will provide insight into how the immune system works to cause food allergy.

“Our study is evaluating clinical measures but in conjunction with the lymphocyte markers that will give us a better way to treat and potentially cure food allergy,” said Davis.

One in 13 U.S. children has a food allergy according to recent data from national organization FARE (Food Allergy Research and Education). This reflects a nearly 50 percent increase in childhood food allergies between 1997 and 2011, leading to 25 billion dollars per year in related health costs to treatment and diagnosis.

People can be allergic to any type of food, but eight foods account for nearly 90 percent of all allergic reactions to food in the U.S., with peanuts being the food that is most associated with life threatening food related anaphylaxis. More than 400,000 school-aged children in the United States have this allergy, according to the American College of Allergy, Asthma and Immunology.

“We chose this food (peanuts) to make the largest difference in safety for our patients,” said Davis.

Texas Children’s is the first center in the southwest region to have approval by the FDA to dispense peanut flour as an investigational new drug. The study will be funded by donations to the Food Allergy Program, with the majority of funds from a private group of individuals in the Food Allergy Advisory Group. Initially, 20 patients will be enrolled, with the potential to enroll hundreds more over the next three years, with the help of expanded funding.

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Read the newest “Super Star” Q&A featuring Jennifer Neidinger, Adolescent and Sports Medicine, Renal, Rheumatology and Pediatric Adolescent GYN clinics. “A Texas Children’s Hospital Super Star is someone who strives for excellence in every patient/family interaction,” Neidinger said. “Someone who leads by example and goes ‘above and beyond’ to meet the needs of our patients and families – with a smile.”

 
 
 
 

Q&A: Jennifer Neidinger, July – September 2014 Leader

Your name, title and department. How long have you worked here?
My name is Jennifer Neidinger, RN. I am the 11B Clinic Manager for Adolescent and Sports Medicine, Renal, Rheumatology, and Pediatric and Adolescent GYN services. I began my career at Texas Children’s Hospital in September 2001 (12½ years).

What month are you Super Star for?
I am the Super Star Leader for July-September 2014.

Tell us how you found out you won a super star award.
My director, Ryan Breaux, announced my recognition as a Super Star during our Leadership meeting. Following this surprise recognition, our Leadership Team hosted a wonderful breakfast for our team to celebrate together.

What does it mean to be recognized for the hard work you do?
It is such an honor to be recognized as a Super Star within an organization which is so full of Super Star employees and leaders. This recognition is so special to me because I feel so lucky to be part of such an amazing team.

What do you think makes someone at Texas Children’s a super star?
A Texas Children’s Hospital Super Star is someone who strives for excellence in every patient/family interaction. Someone who leads by example and goes “above and beyond” to meet the needs of our patients and families – with a smile.

What is your motivation for going above and beyond every day at work?
The patients and families who trust us to provide their care every day.

What is the best thing about working at Texas Children’s?
I am humbled by the strength and bravery of our patients and their families. I am honored by the commitment and compassion of the staff. I am excited about the strides in pediatric care at Texas Children’s Hospital, and I am so fortunate to work here.

Anything else you want to share?
This recognition is such an honor which I would like to share with my colleagues, the staff of 11B, my physician partners and my leadership team. I am so fortunate to be part of this “family” and am so pleased to represent the organization as a Super Star Leader.

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By Dr. Jennifer Arnold

Soon after adopting Will and Zoey in 2013, our lives were thrown a major curveball when I was diagnosed with Stage 3 choriocarcinoma. After months of treatment and finally kicking cancer into remission, I went back to work this spring as medical director of Texas Children’s Simulation Center. Returning to my job has been a big adjustment for our entire family, but it’s also worked out for the best! It’s really important to me to raise our kids as independent go-getters who work hard to achieve their goals in life. I hope that by seeing Bill and I enjoying our careers – despite obstacles that have come our way – they will learn the value of perserverance and overcoming challenges.

Being a mom is the toughest and most rewarding job. I know everyone says that, but it’s true! It’s not easy to keep up with everything at work and at home when we have so much going on – in fact, it’s a constant challenge. Here are some of the ways that I try to balance it all:

Take things one step at a time
No matter how much is going on, I have to take a deep breath and think to myself, I can only accomplish one thing at a time. Personally, I believe my perspective has changed since becoming a cancer survivor. I don’t sweat the small stuff anymore but instead move towards the things that really matter. I also try not to get caught up in what other people think. I know that work didn’t stop while I was away, and I’m still trying to catch up. I’m really focused on getting back to some important initiatives we are working on in the Simulation Center. I am staying focused on what I think is important for the program and our institution. I’m constantly honing in on what needs to get done one step at a time in order to achieve our larger goals.

Prioritize and organize
Making lists and setting a routine works really well in my work and home life. Before kids, I didn’t think life could get any busier – well I was wrong. Life is crazy busy and it’s getting more difficult to keep up. I am not sure whether it’s residual “Chemo Brain,” the fact that I have turned 40, or becoming a new parent of two toddlers, but it is so easy to lose track of all the work and home “To Do’s” that need to be addressed. With my love-hate relationship with technology, I am trying to better harness tools to help me stay organized. There are so many new applications for your smart phone, tablet, and PCs that you can access anywhere to keep lists and project documents close at hand. Sometimes I have to do work from unusual places, so making everything easily accessible is key. When it comes to everything at home, it helps that Bill and I are pretty good about dividing and conquering! Prioritizing family, health and work is sometimes a struggle, but Bill and I try to keep each other in check. It’s hard for both of us to be away from the kids during work, but it’s easier because we have a good system in place with a fantastic nanny and family support.

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Don’t feel guilty for not doing it all
Sometimes you have to say no, and sometimes it’s ok to just be “good enough” rather than perfect. My best friend recently sent me a card describing how to do this. It’s a trait that I don’t think any mother is good at, but I try to remind myself that no one is perfect. This is tough for me to wrap my head around as I am a perfectionist – both as a professional and as a mom. I have to accept I can’t do everything, and I certainly can’t do it on my own. I’m lucky to have a great support system and so many people to rely on for help. First, my husband has been my sounding board when times were tough getting back into work. Second, my parents and nanny have been essential for helping us take care of the kids. Third, all of my colleagues have been so supportive and welcoming – which has helped me transition back into the swing of things. All of these people have made it possible for me to keep my family and my career on track.

Treat yourself
This one may come as a surprise, but I think it’s important to stay balanced and happy. I need to do this more often when I am stressed out. I try to make time once in a while for something that makes me happy. It can be something as small as watching my favorite TV show or getting a manicure – but I find that attending to my needs and putting myself first every once in a while makes me better equipped at dealing with everyone else’s expectations and the demands of being a working mom. Even though I often complain to Bill that filming our TLC television show on the weekends feels like one extra burden on our very busy lives, it allows us to take time to enjoy life and do fun stuff. Instead of just hanging out at the house with the kids on a Saturday afternoon, we can do something fun we might not otherwise do. I have learned that it is ok to reserve the weekends for quality family time since I’m not around much during the weekdays. I think we’re able to appreciate our time together as a family more since we have less of it with the busy demands of my career. I still feel tired at the end of the day, but at the same time, I’m so happy to get into a routine and just be boring for awhile.

82714BWJArnold640-3Be prepared
Having a Plan A and a Plan B makes me feel very comfortable about immersing myself back in work. Thankfully, we have an outstanding nanny. Kate is great with Will and Zoey, and with her background in child life, I feel comfortable that we have an expert to help care for our kids. But having my parents close by as a backup is also very reassuring. Zoey is much more comfortable, and she and Will are growing so much. They start school this fall so I am nervous, and at the same time, excited to see them flourish outside of our family unit.

Cancer kept me from my work for too long, but the silver lining was a lot more time with our newly adopted kids. When I returned to work, I was nervous about leaving them and not being around as much. It took me a few weeks to adjust, but I am comfortable knowing that little day-to-day issues won’t be a distraction since we have support and a plan (and a backup plan) in place.