A pediatrician and a neurologist share their experience raising a son with Sotos syndrome.

What is Soto’s syndrome? A pediatrician (Dr. Liz Contreras, MD) and an adult movement disorder neurologist (Luis E. Zayas, MD PT) share their experience raising a son with Sotos syndrome.
Soto’s syndrome is a genetic disorder that results in rapid physical growth during early childhood. Children with this condition usually have a larger body size, including a larger head, compared to their peers. Their facial features are often distinct, including a long and narrow face, a high forehead, reddened cheeks, and a small, pointed chin.
About 95% of cases of Soto's syndrome occur due to new mutations rather than being inherited.
The symptoms of Soto's syndrome can vary significantly. Individuals with this condition may have intellectual disabilities ranging from mild to severe, or they may have average or above-average intelligence. They may also experience global developmental delays, particularly in speech. Those with Soto's syndrome may also have other conditions, such as autism spectrum disorder, attention-deficit/hyperactivity disorder, phobias, obsessions and compulsions, tantrums, and impulsive behaviors.
Although Soto's syndrome presents significant challenges, it is essential to note that it is not a progressive or degenerative condition like many other neurological diseases. The good news is that with appropriate support and early diagnosis, those affected can experience improvement in their symptoms. In fact, many children with Soto's syndrome have the potential to lead completely functional and independent lives.
Visit the Soto's Syndrome Support Association website for information and advice about this rare syndrome. If your child has been diagnosed, you are not alone.
Link: www.sotossyndrome.org/
Liz Contreras, MD
Pediatrician- Maryville, Tennessee
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