Program
This highly entertaining, thought-provoking presentation is packed with practical, proven techniques for setting, pursuing, and achieving both professional and personal goals, and will inspire attendees to attack their objectives with renewed vigor, determination, and focus. In his Seven-Step Guide--from Controlling Stress to Identifying a Specific Target to Taking Bold Action--Mack dramatically demonstrates how far diligent baby steps can take you, how to maintain a positive attitude and sense of humor during the direst of circumstances, and how to dissolve that knot of fear when you’re venturing into unknown and frightening new territory. The audience will listen, mesmerized by the message and Mack’s magical stage presence, they’ll laugh, and they’ll learn that nothing can prevent them from making themselves and their organizations the very best that they can be.
Adrenoleukodystrophy is a peroxisomal disorder with varying clinical presentations, variably affecting the adrenal glands, nervous system, and testicular function. New York State started screening for adrenoleukodystrophy (ALD) on the newborn screening panel on December 30, 2013. Since that time, it has expanded to 14 states, with many states mobilizing efforts to add it to their screening panels after ALD was added to the Recommended Uniform Screening Panel in 2016. Initial experience with early onset adrenal insufficiency led the Pediatric Endocrine Society to publish guidance for monitoring newborn males with ALD, and recent publications have suggested adrenal insufficiency is present in the vast majority of males with ALD.
TransCon technology provides the paradigm shift of long-acting medication to achieve unmet medical need. The Phase 3 heiGHt trial demonstrated TransCon hGH had superior efficacy, as well as comparable safety and tolerability to daily growth hormone. It is believed that these results provide a validation of the TransCon technology platform, which forms the basis of the endocrinology pipeline, which includes TransCon PTH for hypoparathyroidism and TransCon CNP for achondroplasia. This presentation will be helpful for practitioners in the field of pediatric endocrinology.
The purpose of this topic is to motivate the participants to think about the utilization of an innovative team when caring for vulnerable children and families – using a randomized controlled study as an exemplar.
Building a new clinic from the ground up without much precedent to go off of was very challenging. We would like to take what we have learned and share it with others in hopes of making it easier for other medical centers to build their own programs. The CDC published recently that 1.8-2% of high school students in the U.S. identify as transgender, and we have seen our clinic grow from 38 patients to over 500 in two short years. This type of clinic is providing an unmet need for an underserved population in the community and it can bring increased visibility to medical centers.
Children on the autism spectrum face numerous daily challenges based on the characteristics associated with autism. This attributes of rigidity, need for routine, and sensory defensiveness often contribute to selective eating patterns and preferences for calorically dense foods. Consequently, the development of persistent abnormal eating behaviors likely contributes to the development of feeding and weight concerns in children with Autism. The prevalence of overweight/obesity in children with autism is between 14.8% and 23 %, and can be as high as 30% for children with behavioral concerns on atypical psychotic medication. Rates are higher than typically developing children. This presentation will address common barriers to successful weight management as identified by parents and providers. Through case presentations, we will brainstorm strategies to address these barriers and discuss intervention to decrease risk for long-term comorbidities, including type 2 Diabetes. Weight management is tricky for many and is even more challenging for children with autism.
Provide tactics in minimizing denials Promote awareness of growth impaired children and their inability to obtain medication due to payor exclusions and criteria Utilization of resources pertinent to appeal process Denials for growth impaired children are on the rise dramatically due to the PES consensus guidelines; we will discuss current trends and potential solutions to assist the nursing community in gaining access for patient medications.
Dr. Klein will utilize several case studies to discuss challenges in diagnosis, treatment, monitoring, and discontinuing therapy and how to overcome them. Dr. Klein will also share current and updated clinical data from Lupron Depot-PED’s long-term clinical data discussing efficacy, safety, and long term growth and fertility outcomes. Dr. Klein will also share AbbVie’s patient support resources to help families facing Central Precocious Puberty.
Growth failure is a common cause for referral to Pediatric Endocrinology, with a wide variety of etiologies, not always treated with growth hormone. The primary objective of this presentation is to utilize case studies to explore three different causes of growth failure, including pathophysiology that precipitates growth failure, iatrogenic causes of growth failure, and psychosocial obstacles that induce growth failure and prevent appropriate, timely treatment. This presentation, intended for all Pediatric Endocrinology nurses, will include power point and lecture, but a primary educational opportunity will be to allow participation by attendees in small and large group discussion to determine solutions to questions and issues posed throughout the case studies. This session will be a different, fun way to examine growth problems in children and share possible solutions.
Writing is health supportive. It impacts our physical, emotional and cognitive being. Writing letters, notes, journal entries and poetry; writing heals. Writing improves working memory, learning, and coping skills. It improves social/linguistic behaviors and athleticism. Writing connects with emotions and helps with cognitive processing and reorganizing. In rewriting the ending with adapting words; personal meaning is enhanced; a new sense of the experience is discovered. Writing settles feelings that arise from life “challenges”. It helps one make sense of the experience, the “whole”. Words help one adapt personal meaning. With writing, experiencing and sharing sometimes memories are sparked. New meaning is found, sometimes with a “narrative” attitude. When stories are renewed, hope is fostered by tapping into one’s own capacity to make life changes (Berger, R., & McLeod, J., 2006). Power found after life challenges are resiliency supportive. In Writing the Roller Coasters we will explore the benefits of writing for health. Participants will experience the Pennebaker Process. We will discuss the impact and importance of timing in writing. We will discover how writing supports action orientated self-care. The RES process: Reflective, Expressive and Symbolic processes of poetry therapy will be explored, along with how poetry heals. Participants will participate in a group writing process, which is health supportive.
Fran Waite, RN
General Session 6What's Sex Got to Do With It? Providing Competent Care for LGBTQ+ Youth and Their FamiliesPediatric and adolescent transgender care is typically embedded in pediatric endocrinology practices. We want all pediatric endocrinology providers, including NPs and RNs, to be able to provide inclusive and affirming care for LGBTQ+ children, adolescents, and their families. The presenters will define gender terms and how to affirm gender expansive children and teens. They will present some patient-care scenarios involving LGBTQ+ youth/families, and solicit audience participation. They will also present several options for GnRH agonist ("blocker") therapy and gender affirming hormone therapy, and discuss the pharmacology of the most commonly used medications in our clinic. The presenters feel that the information they are presenting is unique because they are part of the only pediatric transgender clinic of its kind within a 250+ mile radius. Coming from the center of the midwest, the center provides "progressive" care in a region that isn't always progressive. The presenters will include humor, encourage audience participation, and bring a special flair to their presentation.
Dr. Palmer will discuss various urologic concerns for children and adolescents diagnosed with CAH.
Over the years, I have worked with a team at our Diabetes Center to try and find ways to connect without patients outside of our usual clinic visits. Diabetes is a difficult condition and families often feel alone in managing day in and day out. I will share with PENS participants ways in which we have successfully reached out to our families in the community where they are by using internet resources such as newly designed web pages, e-newsletters and most importantly social media. I will share my experience with using social media to connect with families in a way that provides connections within the community (families connecting with each other) and also provides timely education--for example Facebook posts for families preparing for a weather emergency TONIGHT! We have worked hard to think outside of the box to find ways to provide information, educational resources, and very welcome positive reassurance to our families and their response has been overwhelming! This session will inspire the listener to think differently about ways that their team can connect with families to disseminate information and to give families a forum to connect with and inspire each other! This type of presentation will be different for PENS participants as it will inspire the listener's creativity and will encourage team members to work together to think through new ways to connect with patients and families.
Diabetes distress is about the emotional side of caring for self with diabetes. About one third of youth with diabetes experience diabetes distress (DD) (Fischer, L. et al 2019). This session will define DD, review assessment of DD and risk factors for DD. While DD is best managed in a multidisciplinary fashion, this is not always available. Recent data demonstrates DD can be addressed in the clinic visit (Fischer, 2019). Fischer listed strategies to consider in DD interventions will be reviewed, including:
Small group discussion using case scenarios will be used as participants practice using DD interventions as outlined above, (Fisher, et al., 2019).
