Andermann syndrome

Healthcare/Doctors

How do I find a center of excellence in Andermann Syndrome?

While there are not any centers of excellence in Andermann Syndrome in the United States, there are doctors who are familiar with treating those with a missing or underdeveloped tissue connecting the left and right sides of the brain (agenesis or the corpus callosum), which is a primary feature of the condition. One the best ways to find a doctor familiar with Andermann Syndrome care is to talk with other parents of children with the condition.

Researchers who are interested in Andermann Syndrome include Nicolas Dupré in Quebec City, Canada and Guy A Rouleau in Montreal, Canada.

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If my child has Andermann Syndrome, what specialist doctors should they see?

If my child has Andermann Syndrome, what should their doctor know about managing the disease?

If my child has Andermann Syndrome, what specialist doctors should they see?

Following diagnosis, a child with Andermann should have an evaluation by a medical geneticist, an assessment by a physical therapist, and a developmental assessment. Physical therapy may be helpful in maintaining movement as long as possible. Additionally, a psychiatrist should be seen to monitor, diagnose and treat any psychiatric episodes that the child may experience as they get older. An orthopedist may also be helpful to diagnose and treat the scoliosis that can develop as a result of the muscle and nerve damage. A neurologist should also be seen.

If my child has Andermann Syndrome, what should their doctor know about managing the disease?

That treatment for Andermann Syndrome is supportive and care is best provided when approached by several different physicians including a pediatric neurologist, occupational and physical therapist, psychiatrist, and orthopedist.

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