Uncommonly good care
At Children's Hospitals and Clinics of Minnesota, our neurocutaneous syndromes clinic evaluates and cares for children with complex genetic conditions that may affect both the nervous system and skin, and sometimes other parts of the body as well.
Neurocutaneous syndromes are progressive and lifelong. They change as your child develops. Symptoms range from mild to severe, and they can be different for each child. Despite these unknowns, we have the expertise to pinpoint these complex genetic syndromes and provide you with support and specialists who know how to help.
Our experts help you help your family
Your child's first visit consists of a thorough evaluation with the clinic's pediatric nurse practitioner or physician and a genetic counselor. We obtain a detailed individual and family medical history and conduct a head-to-toe physical exam.
Because many neurocutaneous syndromes are caused by changes in a gene, our genetic counselor explains genetic testing options in detail. It is important to know that genetic testing is a choice for many of these conditions, but not for all, and some families choose not to test and prefer instead to monitor conditions clinically.
Before initiating genetic testing, we work with insurance companies to obtain prior authorization and discuss potential out-of-pocket costs with families. Test results are usually available within one or two months.
If results are positive, we educate families and make further medical and developmental recommendations. We discuss inheritance and may suggest genetic testing for other family members. We share standards of care for this condition and then develop a care plan just for your child. We describe the natural history of the condition, common complications, and any implications for learning and behavior.
If results are negative, we talk about what this means, and may suggest additional monitoring or testing. After all results are available, we work closely with your child's primary care physician to communicate a diagnosis and a recommended plan of care.
Support from families who have been there
You and your family don't need to go it alone. We may be able to connect your family with another family who has a child with the same condition. We strive to join you in advocacy efforts, and we participate in educational forums and community events. We also work hard to match patients and families with supportive and resourceful groups and associations, such as the following:
LEARN MORE ABOUT OUR NEUROCUTANEOUS SYNDROMES CLINIC