Sotos syndrome

Treatment

Is there a treatment(s) for Sotos syndrome?

There is no cure for Sotos syndrome. Treatment is supportive and based on an individuals symptoms.

Individuals will likely follow with several different types of specialists depending on their symptoms. Sometimes babies have problems feeding and treatment can help babies to feed and gain weight. This sometimes requires a feeding tube. In other cases it may just mean using specific bottles or feeding in certain positions. Heart problems may require surgery to help the heart work properly. Kidney problems may also require surgery to help with bladder and kidney problems. Although there is a low risk for cancer in children with Sotos syndrome, cancer screening is not recommended. Children should be enrolled in early therapies – occupational, physical and speech. Once children are in school they may need to be in a special classroom or have and individualized education plan (IEP). Behavioral problems may require counseling and/or medication to help parents and teachers.

Speak to a genetic counselor or a medical geneticist to learn more about the management and treatment of symptoms in Sotos syndrome.

References
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Are there other organ specific treatments/symptoms specific concomitant treatments for Sotos syndrome?

Are there other organ specific treatments/symptoms specific concomitant treatments for Sotos syndrome?

Treatment will depend on what symptoms a child has:

When a baby is born with Sotos syndrome, they might need treatment for jaundice. This means phototherapy, or being under a light, which helps the color of their skin turn to normal. Sometimes babies have problems feeding and treatment can help babies to feed and gain weight. This sometimes requires a feeding tube. In other cases it may just mean using specific bottles or feeding in certain positions. Heart problems may require surgery to help the heart work properly. Kidney problems may also require surgery to help with bladder and kidney problems. Although there is a low risk for cancer in children with Sotos syndrome, cancer screening is not recommended. Children should be enrolled in early therapies – occupational, physical and speech. Once children are in school they may need to be in a special classroom or have and individualized education plan (IEP). Behavioral problems may require counseling and/or medication to help parents and teachers.

Speak to a genetic counselor or a medical geneticist to learn more about the management and treatment of symptoms in Sotos syndrome.

References

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