Many service providers struggle to keep pace with advances in autism-specific knowledge and tend to refer children to autism specialty clinics when the diagnosis of autism spectrum disorder (ASD) is in question. Unfortunately, it is in these settings where children most often wait for months or, worse, experience barriers to accessing any care at all. This has resulted in an access crisis for children and families with ASD concerns contributing to delays in diagnosis and treatment, particularly for children of color and for under-resourced families. Service disruptions and challenges related to the COVID-19 pandemic have only added to delays. As the need for autism-related services continues to grow, innovative models must be used to enhance competence among frontline medical, behavioral health and community-based providers who currently serve these children and families on a regular basis.
Children’s National Hospital has initiated a number of endeavors focused on increasing access to ASD services through enhanced training experiences, mentorship of allied mental health and frontline professionals and utilization of multidisciplinary approaches. These approaches enhance the skills and knowledge of treatment providers, which allows them to accurately address the needs of autistic patients while they await more comprehensive evaluations and sometimes reduce the need for additional evaluation. The following are efforts currently underway.
Virtual ECHO (Extension Community Healthcare Outcomes) Autism Clinics
The Center for Autism Spectrum Disorders (CASD) is hosting virtual ECHO (Extension Community Healthcare Outcomes) Autism Clinics aimed at building autism knowledge and competencies amongst community providers by creating shared learning forums with a multidisciplinary group of autism specialists for dissemination of knowledge and mentorship.
Clinics run in 6-month sessions on a bimonthly basis and target professionals in medical, community and educational/early intervention settings. There is no requirement for prior autism-related knowledge or training. The emphasis in learning stems from case-based discussions primarily, along with targeted autism specific didactics.
We have found good satisfaction with the program overall, as well as self-report of gains in ASD-specific knowledge and care competencies as a result of participation in ECHO. To date, CASD’s ECHO Autism program has reached 290 professionals and trainees serving autistic children and their families.
Integration of autism evaluations into primary care sites
The Community Mental Health (CMH) CORE (Collaboration, Outreach, Research, Equity) within the Children’s National Hospital Child Health Advocacy Institute (CHAI) has been working collaboratively with several other divisions, including CASD, to integrate autism evaluations into primary care sites for young children with high concern about ASD. We aim to increase capacity and access to autism services by training embedded psychologists in primary care settings in autism diagnostics.
By increasing behavioral health provider capacity and integrating in primary care, this clinic has been able to drastically decrease waits for ASD services by months to years. Families served by the program were predominately Black (81%) or Latinx (10%), and most (87%) had public insurance. Nearly one third (32%) were not primary English speakers. An ASD diagnosis was provided in 68% of all cases.
All referring PCPs surveyed indicated that they were “satisfied” or “very satisfied” with the program, that they “strongly like the integrated clinic model,” and that the program “is increasing equitable access to ASD. Currently, CHAI-supported ASD-focused embedded clinics in primary care have served 94 children and their families.
The choice between stereoelectroencephalography (SEEG) and subdural evaluation is not mutually exclusive, according to a new opinion piece published in JAMA Neurology.
In their article, Chima Oluigbo, M.D., pediatric epilepsy neurosurgeon, William D. Gaillard, M.D., division chief of Epilepsy and Neurophysiology and Neurology, both at Children’s National Hospital, and Mohamad Z. Koubeissi, M.D., M.A., from The George Washington University Hospital, discuss how the practicing epileptologist requires a profound understanding of the roles of different technologies. It also looks at how to integrate both traditional and emerging paradigms to optimize seizure control. This issue is particularly relevant to choosing the best method of invasive intracranial electroencephalography monitoring in individual cases.
Noting that despite the dramatic increase in SEEG use in recent years, the authors talk about how many patients still benefit from invasive monitoring using subdural grids. Therefore, it is important to define the considerations that should guide decision-making on the choice of SEEG versus subdural monitoring in each patient. The authors expand on their statement explaining that it is critical to define the roles of SEEG vs subdural grid investigation in each patient as subdural grid evaluations are still indicated in specific circumstances.
Additionally combined hybrid deployment of both techniques may be indicated in specific situations. Accommodation should be made to allow customization of the technique chosen to available technical expertise and equipment as well as patient preference.
In the most recent edition of the American Society of Pediatric Nephrology’s Kidney Notes, Children’s National Hospital Chief of Nephrology, Marva Moxey-Mims, M.D., wrote a perspective piece asking other providers to join her in an effort to see patients as a whole person and try to put aside personal biases, thereby improving overall patient care.
In this personal commentary, Dr. Moxey-Mims reflects on challenging herself to better serve patients by making sure they feel seen and to understand them. “Just think of the ripple effect if we can do this with even a fraction of our patients,” said Dr. Moxey-Mims. “The goodwill that patients will feel knowing that we are trying to see them is immeasurable.”
You can read the entire article “Tackling Bias – The Power of One” here.
Carmelo Cuffari, M.D., the new director of Inflammatory Bowel Disease (IBD) Program at Children’s National Hospital is a pediatric gastroenterologist with over 25 years of expertise in managing children and adolescents with Crohn’s disease and ulcerative colitis. His areas of research include drug development and the pharmacology and genomics of immunomodulatory drugs in inflammatory bowel disease and in transplantation.
Here, Dr. Cuffari tells us more about the program he is leading and what it means for the future of pediatric IBD patients at Children’s National.
Q: What are some of the most valuable changes or advancements for the program you hope to see in the next couple of years?
A: In my position as director of IBD, Children’s National supports my goals for the program which include:
- Expanded regional accessibility to an IBD specialist
- Potential to develop international services
- Potential to develop a multidisciplinary pediatric IBD program that would include surgery, psychology and genetics
- Expanding staff to include another IBD specialist to increase our reach
Q: What makes the IBD at Children’s National unique from other programs in the country?
A: We have the unique possibility of developing a colorectal team with our surgical colleagues. This level of collaboration is unique and is a function of our division being under the department of pediatric surgery.
Q: Where do you see research in IBD going in the next few years?
A: There are many areas of exciting growth in research. The areas I am most excited about include:
- Developing a tailored therapeutic approach to disease management that is disease phenotype specific
- Developing biomarkers that may help identify which part of the immune system is dysregulated
- Very early onset IBD (<6yrs) will be better defined genetically and immunologically
Experts leading the Headache Program at Children’s National Hospital recognize how common these disorders are. They also know how disruptive they can be in the day-to-day of children.
Marc DiSabella, D.O., is the director of the program. He is currently leading five pediatric headache trials. In this Q&A, he tells us about the ongoing trials, offering insight into innovative solutions and how he’s carving a new path to improve the quality of life of his patients.
Q: How has your team advised other neurologists on innovative care for patients with headaches that have been refractory to medicines?
A: We receive referrals from outside institutions when they need additional input for diagnostic and management options. We receive patient consult requests from around the country – and sometimes out of the country – to help improve symptoms. In most instances, these headaches tend to be difficult to control and do not respond to available medications. We really try to take a holistic approach to their care, and use treatments in parallel. For example, diagnostic, lifestyle techniques, medications, pain focused cognitive behavioral therapy and physical therapy. We also use complementary medicine as needed, such as acupuncture, injections and infusions.
Q: It is unusual for neurology divisions to run multiple pediatric trials focused on headaches. You are currently leading five that are open. How does this work move the field forward?
A: The medications we offer through our trials allow us to offer treatments that would otherwise not be available to pediatric patients. We do this in hopes of providing them relief while advancing the field. We are hopeful that these new therapies are as effective in pediatrics as they have shown to be in adults. But it is necessary to complete randomized clinical trials to prove this is the case. Historically, pediatric patients in clinical trials investigating painful conditions like migraines have had a disproportionately high placebo response rate. This means even the patients receiving a benign placebo have a high chance of symptom improvement. The newer medications show much better tolerability to the drugs used historically.
Q: What excites you about this work?
A: Pediatric pain disorders are unbelievably gratifying to treat because we take a mysterious disorder that waxes and wanes with no clear reason and give patients back control of their lives. It is extremely frustrating for a patient and their family to know that their day-to-day life can be abruptly derailed by a pain crisis. We work to provide them with several tools they can use daily to take back their lives.
Q: How is this work unique?
A: Our program was created organically over the years through our experiences with our patients. First, we noticed the disruption to patients’ personal and school performance from having untreated pain and recognized the need for pain psychology. Then, we expanded to have physical therapy to recondition patients and perform desensitization. Finally, we recognized our patients need additional medication options not offered through the standard of care. So, we expanded to open our various clinical trials, including those with pharma and internal protocols. As a result, we incorporated the use of Botox injections, for example, and soon will use a novel remote electro-neuromodulatory device.
Pediatric colorectal specialists are in short supply, and this is particularly true in many areas of the developing world. When Marc Levitt, M.D., travels abroad, he consistently finds eager surgeons and nurses who wish to obtain advanced colorectal skills to help their patients. To meet this need Dr. Levitt has established an international observership program that brings leading physicians and nurses from around the globe to participate in one- to three-month-long observerships.
During 2022, the program will welcome participants from 13 different countries including Spain, Belgium, Vietnam, Indonesia, Chile, Pakistan, Uganda, Iraq, Mexico, Brazil, Saudi Arabia and Singapore.
Under the colorectal team’s instruction, participating physicians and nurses will learn how to diagnose and care for children with complex colorectal conditions. They will learn about the wide range of malformations and successful treatment options so they can bring these skills to patients in their home countries. Those selected for these observerships are among the most promising providers in their communities who currently work to improve treatment for children with colorectal issues. The patients they care for are those who would otherwise have no or limited access to this specialty care.
For information about applying for the observership program, please contact the colorectal department at ColorectalVisitors@childrensnational.org.
To keep in-person learning and protect students in schools, pediatricians and public health officials must advocate for evidence-based mitigation strategies that can reduce COVID-19 transmission — especially the Delta variant, which overwhelmed pediatric emergency rooms and hospitals, argued Yang et al. in a Perspective published in the journal Pediatrics.
The authors propose that pediatricians and their associated institutions actively advocate for masking in schools and debunk myths and misinformation during well and sick visits. In addition, they encourage doctors to develop and disseminate behavioral strategies to support children’s compliance with masking based on individual abilities and needs. Finally, providers can partner with educators at the local, district, state and national levels to advocate for evidence-based masking policies.
“As pediatricians, it is our responsibility to advocate for universal masking to facilitate safe in-person schooling for all children,” said Sarah Schaffer DeRoo, M.D., pediatrician at Children’s National Hospital and co-author of the Perspective. “Children have readily adapted to masking during the pandemic and continuing this practice in schools is not a significant change from their recent experience.”
To date, nine states have enacted policies to prohibit school masking mandates, disregarding evidence that masking is a crucial COVID-19 preventive measure, Yang et al. wrote. The court overturned these mandates in four states out of the nine because they either exceeded the governor’s executive authority or did not comply with the law granting the executive order’s authority. In other instances, judges have only placed a temporary block.
“Despite politically charged rhetoric and headline-grabbing lawsuits, evidence shows that schools without mask mandates are more likely to have COVID-19 outbreaks,” said Y. Tony Yang, Sc.D., endowed professor of health policy and executive director of the Center for Health Policy and Media Engagement at the George Washington University, and lead author of the Perspective. “Pediatricians have generally commanded a heightened level of public trust, which suggests that pediatricians who make the case for policies that advance sound medical and public health science may have a greater chance than other advocates of generating the public and political will needed to make evidence-based policy ideas, such as school mask mandates, a reality.”
Some localities have found creative ways to circumvent state mask mandate bans by altering the school dress code to include face coverings and finding loopholes that do not apply to individual cities. Parents have also tried to challenge the policies in court, asserting that mask mandate bans violate federal anti-discrimination laws.
“Continued efforts are needed to ensure schools are able to promote reasonable, evidence-based strategies to promote the health of their students, teachers and communities, and we, as advocates for children, are obligated to emphatically support these efforts,” said Yang et al.
By Marc Levitt, M.D., chief of the Division of Colorectal and Pelvic Reconstruction at Children’s National Hospital
I was honored to serve as the Guest Editor on the topic of “Anorectal Malformations” in the prestigious Seminars in Pediatric Surgery Volume 29, Issue 6, December 2020.
We had 64 contributing authors from 12 countries; Australia, Austria, Germany, Ghana, Italy, Israel, the Netherlands, Nigeria, Spain, South Africa, the United Kingdom and the United States, and 12 U.S. colorectal collaborating programs; Children’s National, Boston Children’s, Children’s Mercy, Children’s Wisconsin, C.S. Mott Children’s, Cincinnati Children’s, Nationwide Children’s, Nicklaus Children’s, Omaha Children’s, Primary Children’s, Seattle Children’s, and UC Davis Children’s.
There were eight authors from the Children’s National team; myself, Colorectal Director Andrea Badillo, M.D., Colorectal Program Manager Julie Choueiki, MSN, RN, Surgical Center Director Susan Callicott, Katie Worst, CPNP-AC, Grace Ma, M.D., Chief of Urology Hans Pohl, M.D., and Chief of Gynecology Veronica Gomez-Lobo, M.D.
The series of articles included in this collection illustrate new techniques and ideas that over time have made a dramatic and positive impact on the care and quality of life of children who suffer from colorectal problems. With an integrated approach to the care of this complex group of patients, great things can be achieved. As we endeavor to advance this field, we need to always remember that, as Alberto Pena, M.D., often said, “it is not the unanswered questions, but rather the unquestioned answers that one must pursue.”
In my own article on advances in the field, a 2021 update, I reproduce a piece by my daughter, Jess Levitt, who wrote something applicable to the care of children with colorectal problems, with the message that helping to create order is vital to improve a somewhat chaotic medical process traditionally available for the care of complex care. Her essay is reproduced here:
“A” must come before “B,” which must come before “C,” everybody knows that. But what if the Millercamp’s of this world did not have to sit next to the Millerchip’s when it comes to seating arrangements? Can Pat Zawatsky be called before Jack Aaronson when the teacher is taking attendance? Do those 26 letters that make up all the dialogue, signs, thoughts, books, and titles in the English-speaking departments of the world need their specific spots in line? Everyone can sing you the well-known jingle from A to Z, but not many people can tell you why the alphabet is the way it is. For almost as long as humans have had the English language, they have had the alphabet. The good ole ABCs.
However, the alphabet represents the human need for order and stability. I believe that the same thinking that went into the construct of time and even government went into the alphabet. Justifiably, lack of order leads to chaos. Knife-throwing, gun-shooting chaos, in the case of lack of governmental order. Listen to me when I tell you that there is absolutely no reason that the alphabet is arranged the way that it is. Moreover, the alphabet is simply a product of human nature and how it leads people to establish order for things that do not require it.
Now I know this sounds crazy but bear with me. Only if you really peel away the layers of the alphabet will you find the true weight it carries. People organized the letters of our speech into a specific order simply because there wasn’t already one. Questioning this order will enlighten you on the true meaning of it. Really dig deep into the meaning behind the social construct that is the alphabet. Short and sweet as it may be, the order of the ABCs is much less than meets the eye. There is no reason that “J” should fall before “K!” Understand this. Very important as order is, it is only a result of human nature. What’s next? X-rays become independent of Xylophones in children’s books of ABCs?
You know what the best part is? Zero chance you even noticed that each sentence in this essay is in alphabetical order.
Her literary contribution inspired me to do something similar. Take a look at the list of articles in this Seminars edition:
- Creating a collaborative program for the care of children with colorectal and pelvic problems. Alejandra Vilanova-Sánchez, Julie Choueiki, Caitlin A. Smith, Susan Callicot, Jason S. Frischer and Marc A. Levitt
- Optimal management of the newborn with an anorectal malformation and evaluation of their continence potential. Sebastian K. King, Wilfried Krois, Martin Lacher, Payam Saadai, Yaron Armon and Paola Midrio
- Lasting impact on children with an anorectal malformations with proper surgical preparation, respect for anatomic principles, and precise surgical management. Rebecca M. Rentea, Andrea T. Badillo, Stuart Hosie, Jonathan R. Sutcliffe and Belinda Dickie
- Long-term urologic and gynecologic follow-up and the importance of collaboration for patients with anorectal malformations. Clare Skerritt, Daniel G. Dajusta, Molly E. Fuchs, Hans Pohl, Veronica Gomez-Lobo and Geri Hewitt
- Assessing the previously repaired patient with an anorectal malformation who is not doing well. Victoria A. Lane, Juan Calisto, Ivo Deblaauw, Casey M. Calkins, Inbal Samuk and Jeffrey R. Avansino
- Bowel management for the treatment of fecal incontinence and constipation in patients with anorectal malformations. Onnalisa Nash, Sarah Zobell, Katherine Worst and Michael D. Rollins
- Organizing the care of a patient with a cloacal malformation: Key steps and decision making for pre-, intra-, and post-operative repair. Richard J. Wood, Carlos A. Reck-Burneo, Alejandra Vilanova-Sanchez and Marc A. Levitt
- Radiology of anorectal malformations: What does the surgeon need to know? Matthew Ralls, Benjamin P. Thompson, Brent Adler, Grace Ma, D. Gregory Bates, Steve Kraus and Marcus Jarboe
- Adjuncts to bowel management for fecal incontinence and constipation, the role of surgery; appendicostomy, cecostomy, neoappendicostomy, and colonic resection. Devin R. Halleran, Cornelius E.J. Sloots, Megan K. Fuller and Karen Diefenbach
- Treating pediatric colorectal patients in low and middle income settings: Creative adaptation to the resources available. Giulia Brisighelli, Victor Etwire, Taiwo Lawal, Marion Arnold and Chris Westgarth-Taylor
- Importance of education and the role of the patient and family in the care of anorectal malformations. Greg Ryan, Stephanie Vyrostek, Dalia Aminoff, Kristina Booth, Sarah Driesbach, Meghan Fisher, Julie Gerberick, Michel Haanen, Chelsea Mullins, Lori Parker and Nicole Schwarzer
- Ongoing care for the patient with an anorectal malfromation; transitioning to adulthood. Alessandra Gasior, Paola Midrio, Dalia Aminoff and Michael Stanton
- New and exciting advances in pediatric colorectal and pelvic reconstructive surgery – 2021 update. Marc A. Levitt
The first letter of each article forms an acrostic of the word “COLLABORATION” which is the secret sauce behind any success in the field of pediatric colorectal care.
Our neurosurgery team is among the most experienced in the nation. We have performed thousands of surgeries and are dedicated to giving the best possible care. The Children’s National Hospital Division of Neurosurgery consistently ranks among the country’s top programs according to U.S. News & World Report.
Patients travel to us from all over the world because we have the resources and expertise necessary to care for their neurological conditions through multidisciplinary programs such as:
- Spine Disorders
- Deep Brain Stimulation Program
- Neuro Intensive Care Unit (Neuro ICU)
- Spina Bifida Program
- Brain and Spinal Cord Tumors
- Craniofacial Disorders
- Chiari Malformations
- Brachial Plexus Injury
- Spasticity Program
- Neurovascular diseases such as AVM’s and Moyamoya
Minimally invasive surgery
The Children’s National Hospital Division of Neurosurgery is among the first in the country to develop new techniques and adopt the latest technologies that make minimally invasive neurosurgery possible by utilizing state of the art equipment and developing new techniques, including:
- ROSA surgical robot / SEEG placement
- Surgical Theater with virtual reality visualization
- Visualase® magnetic resonance imaging (MRI)-guided laser ablation
- 5T intra-operative MRI (iMRI)
- Deep brain stimulation
- Neuropace epilepsy control
Advanced treatment and cutting edge research
Children’s National is involved in cutting edge scientific research offering new hope for our patients and new methods of treatment. Our doctors have developed some of the most advanced treatments and clinics for our patients including:
- Multidisciplinary skull base neurosurgery program
- Participating in the 1st generation of genetic modulation trials
- CAR T-Cell Therapy research
- Ehlers-Danlos syndrome (EDS) /Hypermobility Program
- Pseudotumor Cerebri Multidisciplinary panel
- Leader in open and endoscopic craniosynostosis surgery
Ranked No. 5 in the nation
U.S. News & World Report ranks our neurosurgery program number five in the nation, reflecting our commitment to excellence in care for our patients and families.
Level 1 surgery verification
Children’s National is one of only 12 children’s hospitals in the country to attain Level 1 Surgery Verification from the American College of Surgeons.
Children with rare and medically complex conditions, such as brain tumors, craniofacial disorders, Chiari malformations, vascular disorders and brachial plexus palsy, to name a few, achieve exceptional outcomes at Children’s National. Our patients experience fewer complications, go home sooner and maintain long-term symptom relief.
Our entire team is dedicated to meeting your child’s unique needs. Our Neuro-Intensive Care Unit nurses recognize signs of pain and complications your child may not be able to explain.
Pioneering new treatments
Children’s National is at the forefront of new device-based treatments that not only fix neurologic problems, but also restore brain function. We are one of the few pediatric programs in the country offering dedicated pediatric deep brain stimulation, which uses a pacemaker-like device to significantly reduce the burden of movement disorders and difficult-to-control epilepsy, as well as Neuropace implantation to help with seizures in eloquent areas of the brain.
Training the next generation of top neurosurgeons
We are proudly training the next generation of pediatric neurosurgeons through residency programs and fellowships in conjunction with several area medical schools.
Kurt Newman, M.D., president and chief executive officer of Children’s National, shares his poignant journey as a pediatric surgeon, offering a new perspective for approaching the most chronic and debilitating health conditions. In this independently-organized TEDx event, Dr. Newman also shares his passion for Children’s National and the need to increase pediatric innovations in medicine.