What’s new?

Nationwide, tuberous sclerosis complex (TSC) affects 50,000 people; an estimated 850 South Carolinians have this rare genetic condition. Last fall, the Prisma Health Tuberous Sclerosis Complex Clinic was established in Columbia to offer a multidisciplinary approach that effectively treats the disorder and promotes TSC education and research.

The only such clinic in South Carolina, it has received designation from the Tuberous Sclerosis Alliance. According to that organization, its “recognition and endorsement provides assurance … that the care provided to TSC patients meets appropriate quality standards for best possible outcomes in this complex and frequently difficult rare genetic disorder.”

“We are a multidisciplinary clinic,” said pediatric nephrologist and Clinic Director Monica Cramer, DO, MPH, “and that enables us to follow the latest diagnostic and treatment recommendations and provide care consistent with the highest national guidelines.”

Dr. Cramer continued, “At our clinic, patients see a group of providers at the same visit who can address their multisystemic needs. Patients may begin with mild disease, but other organs can become affected over time. So these patients need to be monitored.”

Cramer

One of 66 clinics nationwide

The TSC Clinic sees a range of patients – infants to the elderly, those recently diagnosed and those living with the condition for years. Patients also exhibit a range in terms of the organ systems affected and the degree to which they are affected.

At the clinic, patients regularly see a pediatric neurologist (Cecilia Fernandes, MD, MBBS), nephrologist (Dr. Cramer), neurosurgeon (Catherine McClung-Smith, MD, FAANS), social worker (Asha Purohit, MPH, LMSW) and, as appropriate, a developmental pediatrician (Marjorie Cloninger, PhD, NCSP). Then, patients are referred to pediatric specialists in cardiology, dermatology, ophthalmology and pulmonology as needed.

Often, children with TSC present with seizures in the first several months of life, and a neurologist is the first to diagnose and refer them. Other symptoms include heart tumors detected in utero, significant developmental delays and a rash typical of TSC.

Clinic specialists are willing to partner with referring physicians who wish to stay involved in the care of the patient.

“We are happy for patients to remain with the referring doctor,” said Dr. Cramer. “We recommend that we see patients at the clinic annually to make sure they’re getting all necessary care coordinated with other specialists – and to offer them research or clinical trial information.”

Dr. Cramer and the other clinic specialists stay abreast of the latest treatments by meeting multiple times a year with Tuberous Sclerosis Alliance experts, attending symposiums and participating in research conferences.

The TSC Clinic takes place the fourth Friday monthly at Prisma Health Pediatric Nephrology, 9 Richland Medical Park Dr., Suite 270, Columbia, SC 29203. To learn more about the clinic, call Michelle Sanders, LPN, Clinic Coordinator, at 803-434-3572.

For information on TSC resources, visit: • tsalliance.org • tsalliance.org/community-alliance/southcarolina

Clinic specialists • Pediatric neurologist Cecilia Fernandes, MD, MBBS • Pediatric nephrologist Monica Cramer, DO, MPH • Pediatric neurosurgeon Catherine McClung-Smith, MD,

FAANS • Social worker Asha Purohit, MPH, LMSW • Developmental pediatrician Marjorie Cloninger, PhD,

NCSP

Prisma Health Pediatric Endocrinology in the Midlands has expanded its services to further educate and improve outcomes in patients with diabetes.

Provider Laura Szadek, DNP, brought two additional staff members to the team – Gwendolyn Girdler, NP, a certified diabetes educator, and Cagney Butler, RN, a nurse educator – to address these metabolic needs in our pediatric community: • Lipid disorders • Impaired fasting glucose • Elevated A1c levels • Managing noncritically ill children with new onset diabetes mellitus in the outpatient setting • Outpatient diabetes re-education for poorly controlled patients with diabetes mellitus

‘We’ve seen an increase in type 2 diabetes, unfortunately, since the onset of COVID-19,” said Dr. Szadek. “Being out of school for so long, kids have been living a more sedentary life at home.”

She continued, “We also take children with other disorders, such as kidney disease, which can lead to significant hyperlipidemia. We work in collaboration with our nephrologists to keep those kids healthy until they go to transplant.”

Szadek The team’s lipid program was developed to address a growing need from community pediatricians to refer patients with hyperlipidemia. Patient education is stressed to prevent artherosclerosis or cardiovascular disease in these children as they age.

“You know if you have diabetes, because you’re symptomatic; but with hyperlipidemia, you don’t feel it,” she said. “There are no symptoms until you have a cardiovascular event. This is why the educational component of our services is so important, because what we learn as children usually gets carried forward into adulthood.”

“Our goal is to provide comprehensive education to our pediatric patients and families so that we may prevent unnecessary hospitalizations and promote overall healthy lifestyles.” – Laura Szadek, DNP

The 2021 IBCLC Care Award recognizes hospitals, birthing facilities, birthing services and community-based health agencies with international board-certified lactation consultants (IBCLCs) and a dedicated lactation support program. The Prisma Health Center for Pediatric Medicine in the Upstate was one of only three sites in the Southeast to recently receive this two-year award for its quality improvement efforts to promote exclusive breastfeeding in the first 6 months of life in a culturally competent manner and to support lactating moms as they return to work. The center has two sites in Greenville and one in Travelers Rest.