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:
- Children’s Tumor Foundation – A non-profit dedicated to supporting research, development of treatments and cures, promoting access to quality health care and raising public awareness of neurofibromatosis (NF1, NF2 and schwannomatosis).
- NF – Upper Midwest – Supports the Minnesota, North Dakota, and South Dakota NF communities by raising awareness, education and support for those affected by neurofibromatosis. Families may benefit from information and referrals, NF camps, NF-related conferences and financial assistance for issues or emergencies related to NF. They also work to ensure continued federal funding of NF-related research.
- Tuberous Sclerosis Complex
- Tuberous Sclerosis Complex Clinic Without Walls – We are a part of the Tuberous Sclerosis Complex Clinic Without Walls, which is a collaboration among Children’s Hospitals and Clinics of Minnesota, Minnesota Epilepsy Group and Gillette Children’s Specialty Healthcare. The goal is to create a center of excellence for improving care coordination, family education, genetic testing and genetic counseling for patients and families with tuberous sclerosis complex. The neurocutaneous syndromes clinic works closely with other providers in the community who care for children and families with TSC.
- Tuberous Sclerosis Alliance – A nationwide non-profit dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.