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Patient Story: Carter Berlin

Published December 2020 | In Winter 2020

Carter Berlin’s autoimmune disorder diagnosis means he’s had to deal with more in the last six years than most do in a lifetime—but he’s one tough ten-year-old.

Patient Story: Carter Berlin Media

Carter Berlin was just four years old when he was diagnosed with a disease that is especially rare in children. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a chronic autoimmune disorder that causes his body to attack his myelin sheaths, the fatty coverings that protect his nerves.

Carter’s parents first noticed something was wrong when their young son started to stumble and fall a lot. As his condition progressed, Carter began dragging one of his legs, and he got to the point where he couldn’t hold a spoon or sit up on his own.

Heather and Ryan Berlin took Carter to the Mayo Clinic Emergency Department in Rochester, MN, where he was diagnosed with CIDP and received his first Immunoglobulin (IVIg) therapy treatment.

"Something triggers the body’s immune system to attack the protective myelin coating around the nerves that activate muscles. This myelin coating normally acts like the insulation around an electrical wire. When it is destroyed, electrical impulses don’t travel normally between the spinal cord and the muscles. This causes muscle weakness and sometimes sensory problems. Carter has a lot of muscle weakness, and comes in regularly for IVIg infusions. IVIg is an immunoglobulin that suppresses his body’s abnormal immune response so the myelin can repair itself, ” says Wendy Asher, Certified Nurse Practitioner in the Pediatric Department at Monument Health.

Wendy acts as an intermediary caregiver between Carter’s care team of specialists at Mayo Clinic and his primary care physician at Monument Health. She manages his care plan, communicates and helps implement any changes from his physicians.

Since then Carter, now 10, has been receiving regular care at Monument Health, where pediatric nurses are able to administer Carter’s infusions through an IV port inside his chest. IVIg therapy essentially replaces Carter’s immune system so it doesn’t attack his nerves.

The Monument Health Pediatric Unit is able to care for children like Carter by offering outpatient maintenance visits like IVIg infusions. The Rapid City Hospital Pediatric team works closely with Carter’s care team at Mayo Clinic to carry out his plan of care in a setting closer to home. Carter has been receiving care every 10 to 14 days at Monument Health since his diagnosis.

He likes to spend time with his family and friends, including his brother Mason. He enjoys spending as much time as possible outdoors, going camping, playing basketball and soccer, and reading in his backyard hammock. He also plays in his backyard with his rabbit, Onyx.

When Carter was younger, he had anxiety about his infusion appointments. His mom credits a trusting relationship with the caregivers at Monument Health for Carter’s progress in overcoming this anxiety. Carter’s nurses helped him build confidence by listening to what makes him scared and what they can do to make it easier for him. “We’ve gotten to know all of Carter’s nurses really well at Monument Health, and we’ve built a friendship with all of them. They’ve been friendly, caring and supportive throughout this whole journey with us,” Heather said.

Little Black Hills Battles is a recognition of Monument Health’s Pediatric patients who ​bravely fight childhood illness and disease every day right here in our community. Donations through Monument Health’s Children’s Miracle Network (CMN) program are devoted to helping these children. All funds stay local. www.monument.health/cmn

Carter’s journey has been a long one. In addition to his infusions, he’s undergone therapy to build up his muscles, and relearned how to walk and run. He has overcome more than most adults could only imagine. Yet, you’d never know it if you saw him.

Monument Health provides pediatric outpatient services close to home, including Maintenance Chemotherapy, Infusions, Immunotherapy Infusions, Injections, Blood Administration, IV Fluid Hydration, Stimulation Testing