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[RETT-25] Which Doctors Treat Rett Syndrome?

MyHealthTeam

Created on February 25, 2026

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Transcript

Psychologist

Orthopedist

Ophthalmologist

Pulmonologist

Cardiologist

Pediatric neurologist

Palliative medicine

Developmental pediatrician

Gastroenterologist

Pediatrician

Physiatrist

Geneticist

See supportive therapists >

Home health aide

Audiologist

Occupational therapist

Speech-language

Physical therapist

Dietitian

Social worker

See doctors who treat Rett Syndrome >
Doctors Who Treat Rett Syndrome

Pediatric neurologist

A pediatric neurologist is central to your child’s care. This specialist monitors changes in fine and gross motor skills, abnormal movements, and language development. They also diagnose and treat seizures (common in Rett syndrome) and prescribe medications as needed.

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Doctors Who Treat Rett Syndrome

Pediatrician/ primary care provider

Your child’s pediatrician or primary care doctor may be the first to notice signs of Rett syndrome. They can coordinate care between specialists, monitor your child’s growth and development, and serve as a point of contact for ongoing concerns.

Doctors Who Treat Rett Syndrome

Gastroenterologist

A gastroenterologist treats gastrointestinal symptoms, including feeding or swallowing difficulties, constipation, and reflux.

Doctors Who Treat Rett Syndrome

Orthopedist

An orthopedist monitors and treats musculoskeletal conditions such as scoliosis, hip problems, contractures (permanent tightening of muscles or joints), low bone density, and fractures — all of which are common in people with Rett syndrome.

Doctors Who Treat Rett Syndrome

Cardiologist

A cardiologist evaluates and treats heart rhythm problems, such as prolonged QT interval, that can occur with Rett syndrome.

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Doctors Who Treat Rett Syndrome

Developmental pediatrician

A developmental pediatrician specializes in neurodevelopmental disorders. They may help diagnose Rett syndrome and track developmental milestones and regression. They also develop strategies to address behavioral challenges, anxiety, and attention difficulties.

Doctors Who Treat Rett Syndrome

Physiatrist

(physical medicine and rehabilitation specialist)

A physiatrist treats many of the same musculoskeletal issues as an orthopedist but focuses on improving physical function, mobility, and daily activities without surgery. They also help manage pain and recommend adaptive devices when needed.

Doctors Who Treat Rett Syndrome

Pulmonologist/ sleep medicine specialist

A pulmonologist monitors and treats breathing problems, such as hyperventilation or breath-holding spells. A sleep specialist evaluates and manages sleep-related breathing problems, such as snoring or pauses in breathing, and can help with insomnia and disrupted sleep.

Doctors Who Treat Rett Syndrome

Psychologist/psychiatrist

A psychologist or psychiatrist can help address mental health challenges related to Rett syndrome, including emotional stress and behavioral concerns, and can teach coping strategies for caregivers. Psychiatrists can also prescribe medication for co-occurring conditions, such as attention-deficit/hyperactivity disorder or anxiety, if needed.

Doctors Who Treat Rett Syndrome

Geneticist

A genetic doctor specializes in genetic testing and interpreting results for conditions such as Rett syndrome. They may help confirm the diagnosis, often alongside a developmental specialist, and recommend additional screenings — such as heart rhythm monitoring — that may be needed after diagnosis.

Doctors Who Treat Rett Syndrome

Ophthalmologist

An ophthalmologist (eye doctor) checks for vision problems, abnormal eye movements, or eye misalignment and monitors for these issues over time.

Doctors Who Treat Rett Syndrome

Palliative medicine specialist

Pediatric palliative care focuses on improving quality of life and supporting the child and family — not just end-of-life care. Because people with Rett syndrome may live into adulthood but often need significant daily support, palliative medicine specialists help families clarify goals, manage symptoms, and make care decisions that align with their values.

Supportive Therapists

Speech-language pathologist

A speech-language pathologist (SLP) helps support communication using existing speech skills or augmentative and alternative communication, like picture boards or electronic devices. SLPs may also work with dietitians and other specialists on feeding and swallowing strategies to reduce choking risk.

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Supportive Therapists

Physical therapist

A physical therapist (PT) helps manage mobility and postural concerns, including contractures, scoliosis, muscle tone changes, and walking difficulties. PTs also teach caregivers exercises and positioning strategies and recommend adaptive equipment, such as walkers or wheelchairs.

Supportive Therapists

Audiologist

An audiologist performs hearing tests to monitor for hearing loss, which can affect speech and communication development.

Supportive Therapists

Occupational therapist

An occupational therapist (OT) helps improve your child’s ability to perform daily activities, such as feeding, positioning, and upper body movement. OTs also support strength, functional skills, and fine motor development.

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Supportive Therapists

Dietitian

A dietitian develops and monitors a nutrition plan to support growth and bone health. They work with you and an SLP on safe feeding strategies to reduce choking risk, and they may discuss tube feeding if chewing and swallowing become severely impaired. They also monitor vitamin and mineral intake.

Supportive Therapists

Home health aide or nurse

Caring for a child or adult with Rett syndrome often requires extensive daily support. A home health aide or nurse can provide care for several hours a day or around-the-clock care, depending on medical needs and equipment. Ask your child’s pediatrician or primary specialist about arranging home care services.

Supportive Therapists

Social worker or case manager

A social worker or case manager helps families coordinate appointments, access community resources, and develop care plans. They also support communication among different members of the care team.