Team approach helps in care of Down syndrome

This piece is sponsored by Avera.

A specialized clinic for Down syndrome offers parents and children who live with this genetic disorder a regular opportunity to see a number of experts during a single visit.

Avera’s Down Syndrome Clinic in Sioux Falls gives them the chance to visit not only with a primary care physician but also with speech, occupational and physical therapists, sleep specialists and pediatric subspecialists who can provide support and insight.

“We can help them address specific issues, and we can coordinate the child’s care in real time, based on their needs,” said Dr. Christiane Maroun, an Avera pediatrician.

Tailored to the patient 

Along with a range of developmental delays, patients with Down syndrome have higher rates of certain conditions, including thyroid disorders, heart defects, celiac disease and white blood cell abnormalities, as well as hearing and vision problems. Scheduling individual appointments to get care for each area can be difficult, especially for people who travel to Sioux Falls.

“Reassurance is a key aspect of the clinic,” Maroun said. “With the clinic model, we make sure that the appropriate assessments are being done by other disciplines and we’re not missing anything.”

These assessments include therapy evaluations and treatment plans, audiology evaluations, sleep studies and appropriate laboratory studies.

“We offer genetic counseling for parents, and this gives them information on developmental expectations and a better understanding of things they may face as their child ages,” Maroun said.

Wide range of experts

Maroun was part of a team in Rhode Island that operated a Down syndrome clinic. In Sioux Falls, she operates the clinic along with Dr. Jennifer Tegethoff, an Avera pediatrician in Mitchell. As a mother of a child with Down syndrome, Tegethoff adds an additional layer of both personal and professional experience.

Having a child with Down syndrome encourages her to stay up to date on new information and guidelines that are published about Down syndrome, as well as the reasons behind these guidelines.

“Most importantly, I hope that I can give parents encouragement and reassurance,” she said. “While sometimes the situations are hard, life with a child with Down syndrome will teach you so much, and you will get to see so much beauty that you might not experience otherwise.”

Other physicians with extensive expertise also provide their insight.

“One of our goals is to make sure all physicians around the region know about our clinic and its offerings,” Maroun said. “With more awareness, more people could benefit from this approach.”

Convenient, coordinated care for families 

Tegethoff said the combination of medical approaches in the clinic can offer convenience that is important for busy families.

“Our goals are for patients to receive the best care, naturally, but also in a convenient way,” Tegethoff said. “By working closely with other specialists, we can help reduce stress by lining these meetings up in an accessible time frame, which makes things easier for families to achieve the right clinical attention.”

The clinic is also connected with New Directions Down Syndrome Association, a Sioux Falls-based advocacy group. Representatives from the group, usually parents, can meet with families and help them find the most accurate and current information available.

Their advocacy, paired with Avera’s wide range of specialists, subspecialists and others, all are valuable resources.

Connect with services dedicated to caring for Down syndrome by talking to your primary care provider.

Get more tips at Avera.org/Balance.