Tuberous Sclerosis: Building a complex program

Published On 03/07/2016

Building a complex program

In the past decade, Le Bonheur has dedicated resources to expand its Tuberous Sclerosis Complex research program, recruited targeted specialists, clinicians and researchers and adopted new technology that can be life-altering for patients.

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Case Study: Rinnie Pegg

At 3 years old, Rinnie Pegg was diagnosed with Tuberous Sclerosis, a disease that causes tumors to form on the organs. View her journey through brain surgery.

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Patient Story: Maddie Lens

When Chris and Heather Lens learned their baby girl, Maddie, had Tuberous Sclerosis Complex (TSC), they were devastated.

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Finding Support

After battling TSC with their son, the Schwaigert family formed a Facebook support group, a place where other TSC families could connect.

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When pediatric endocrinologist Ramin Alemzadeh, MD, joined Le Bonheur in summer 2015, he envisioned creating a team-based program to help children living with diabetes. Alemzadeh, who last July was named chief of Pediatric Endocrinology at Le Bonheur, specializes in management of type 1 and 2 diabetes, lipid disorders, metabolic bone disorders, polycystic ovary syndrome, disorders of growth and puberty and adrenal disorders. He was drawn to diabetes care since its etiology is not clearly understood and hopes to help his patients better manage the disease.

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IntroPhoto_Time Out

A daily 15-minute huddle, called a Daily Safety Brief, has improved interdepartmental communication and reduced the time it takes to resolve safety-related issues since it was implemented at Le Bonheur Children’s Hospital last spring. Issues might include critical drug shortages, missing or inoperative equipment or personnel shortages. The idea is quickly becoming a best practice for children’s hospitals nationwide. Eight months after implementing Daily Safety Briefs at Le Bonheur, more than 70 reported safety-related issues have been resolved.

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A variation in the gene that produces brain-derived neurotropic factor (BDNF) may have an influence on obesity in both children and adults. The study, funded by the National Institutes of Health and led by Joan Han, MD, director of Le Bonheur’s Pediatric Obesity Program, was published in the November issue of Cell Reports. The study found that the less common version of the BDNF gene may predispose people to obesity due to it producing lower levels of BDNF protein, which helps the brain regulate a person’s appetite.

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Le Bonheur’s Heart Institute recently received the highest possible rating, three stars, from The Society of Thoracic Surgeons (STS). Only 10 of the STS’s 117 participating programs received three-stars in the Fall 2015 STS Congenital Heart Surgery Database Feedback Report. The three-star rating is awarded for excellence in cardiac surgery outcomes in a four-year period from 2011-2014. The STS Congenital Heart Surgery Database compiles data from pediatric heart programs across the country and publishes surgical outcome information twice a year.

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Le Bonheur Children’s Neuroscience Institute recently tested a multi-modal approach to pre-surgical brain mapping, comparing the combination’s validity and precision to the traditional, but more invasive method of cortical stimulation mapping (CSM). Researchers, led by Abbas Babajani-Feremi, PhD, combined high gamma eletrocorticographic (hgECoG) recordings, functional magnetic resonance imaging (fMRI) and transcranial magnetic stimulation (TMS) to identify function-specific areas of the brain. The study made the cover of the March 2016 edition of Clinical Neurophysiology.

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