Sotos syndrome

Healthcare/Doctors

How do I find a center of excellence in Sotos syndrome?

There are currently no centers of excellence for Sotos syndrome. Research on Sotos syndrome and behavior was recently performed by Dr. Trevor Cole and Professor Chris Oliver, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Edgbaston, B15 2TT, UK. E-mail: c.oliver@bham.ac.uk.

Understanding Behavioral Characteristics in Sotos syndrome

It is important that children with Sotos syndrome have a consultation with a medical geneticist and/or genetic counselor to make a diagnosis. Speak to a genetic counselor or a medical geneticist to learn more about Sotos syndrome.

References
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What specialist doctors should I see with Sotos syndrome?

If I have Sotos syndrome, what should my doctor know about managing the disease?

What specialist doctors should I see with Sotos syndrome?

Children with Sotos syndrome may need to see a variety of specialists depending on their symptoms.

Heart doctor to have a heart ultrasound (echocardiogram) to look for problems with how the heart is working

Kidney doctor to have a kidney ultrasound to see if urine is going in the correct direction.

If there is a suspicion of hearing loss or a child has a lot of ear infections, they should see an ear specialist to check for hearing loss.

If seizures occur, a child should see a Neurologist (brain doctor)

To learn more about the specialists that an individual with Sotos syndrome may need, speak to a genetic counselor or a medical geneticist.

References
If I have Sotos syndrome, what should my doctor know about managing the disease?

Individuals with Sotos syndrome should continue to follow with their primary care physician (PCP) for their general health. It may also be important to see the other specialist depending on an individuals symptoms. People with Sotos syndrome may need to see a cardiologist (heart doctor), kidney doctor, ENT (ear nose and throat doctor), or a neurologist (brain doctor). Speak to a genetic counselor or a medical geneticist to help guide which specialists may be needed.

References

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