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Published on November 23, 2018

child with down syndrome and parent

A Team Approach in the Care of Down Syndrome

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, held every other month 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 sub-specialists 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 Christiane Maroun, MD, Avera Medical Group 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, 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.

“With the clinic model, we can help get assessments and tests done during a single stop,” Maroun said. “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 reassurance is another key aspect of the clinic.

“We can make sure that the assessments recommended by American Academy of Pediatrics guidelines are completed,” she said. “Since we are seeing patients as a team, we can cross-check and ensure we are not missing anything. I feel this brings confidence to the parents as well as the child.”

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 Jennifer Tegethoff, MD, Avera Medical Group pediatrician from Mitchell. As a mother of a child with Down syndrome, Tegethoff adds an additional layer of both personal and professional experience. 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,” said Maroun. “With more awareness more people could benefit from this approach.”

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. “Since we are bringing our specialists, therapists and support personnel together in a single location, we are creating that setting. We do this to help reduce stress, and having these services in single stop can make things easier for the families who might need to make many appointments in order to achieve the same clinical attention.”

The clinic also partners with New Directions Down Syndrome Association, a Sioux Falls-based advocacy group. Representatives from the group, usually parents, will spend time with each family that attends the clinic.

“Their work is invaluable. We are glad to have them as part of our team, because they can help families make connections and get the most accurate and current information available,” Maroun said. “Their advocacy, paired with our wide range of specialists, sub-specialists and others, all are valuable resources for patients, parents and families.”

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