Managing MSD
Getting Clinical Care
Management of MSD is largely based on the presenting symptoms. However, the MSD child’s physician should expect the child to have multiple body systems affected, thus requiring a multidisciplinary team to provide care. Some providers that are likely to be a part of your child’s care team include:
Cardiologist
Dentist
Dermatologist
Endocrinologist
Gastroenterologist
Hematologist
Neurologist
Nutritionist
Ophthalmologist
Orthopedist
Pediatrician
Psychiatrist
Pulmonologist
Urologist
Some services that might be recommended include speech, physical, and occupational therapies. To assist with developmental delays, early intervention should be recommended to families whenever possible.
In 2018, clinical care guidelines for MSD were published. Providers should use these guidelines to ensure your child is being properly monitored. We have converted these guidelines into a checklist for both providers and families, available in multiple languages. Please contact us to learn more.
Finding a Doctor
If you have concerns, contact your child’s pediatrician to discuss symptoms and develop a plan of action. Remember, MSD is an extremely rare disease and remains largely unfamiliar to most medical practitioners. A diagnosis can take several years if the appropriate tests are not ordered.
If you have experience with someone not on this list, please let us know.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.