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Rett Syndrome Center

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Our Expertise

ThinkstockPhotos-466595825_316x210One of the highly specialized services offered by the Division of Neurology at the Children's Hospital at Montefiore (CHAM) is the Center for Rett Syndrome. This is the only center for Rett syndrome in the tri-state area.

Rett syndrome is an autism spectrum disorder and the most common genetic cause of severe impairment in girls, caused by mutations in a gene for Methyl-CpG binding protein 2 (MECP2), which locates on Xq28. Children with Rett syndrome appear to develop normally until 6 to 18 months of age, when they enter a period of regression, losing speech and motor skills. Most develop repetitive hand movements, irregular breathing patterns, seizures and extreme motor control problems.

Although Rett syndrome is classified as a neurological disorder, in reality patients with Rett syndrome have multiple handicaps (reflux, constipation, poor nutrient absorption, growth retardation, irregular breathing, autonomic dysfunction, biting/chewing/swallowing difficulties, scoliosis, teeth grinding and dental problems, abnormal sleep patterns, irritability, anxiety, etc.).

Our Center was born out of the optimism brought by the recent scientific proof that even severe symptoms of Rett syndrome can be reversed. The core of our philosophy is our belief that these experimental results will translate into successful treatments.

Our mission is to provide state-of-the-art services for patients with Rett syndrome through intervention, education and research aimed at effective treatments and cures. We ensure that each patient will have continuity of care from infancy through adolescence and adulthood.

Our main clinical efforts are focused on:

  • Providing multidisciplinary care for patients.
  • Conducting pre-clinical and clinical research in order to extend knowledge and treatment of Rett syndrome.
  • Promoting education and support for caregivers, family members, healthcare providers and the community.

In the collaborative environment of the Children's Hospital at Montefiore (CHAM), our multidisciplinary team of medical experts is devoted to addressing the diverse needs of Rett syndrome patients. The plan of care is maximally tailored for each individual, with the aim of helping the entire family to enjoy the highest quality of life possible while awaiting a cure.

Patients can be evaluated at CHAM or at our new location in Yonkers. The smaller, friendly setting of the offices in Yonkers, which are located on the first floor and provide designated parking at the entrance, may be especially convenient for some patients and their families.

To minimize the need for transportation, all consultations are performed at the same location.

Highly specialized services within our Epilepsy Management Center and Epilepsy Monitoring Unit, Sleep Center, Autism Center and Children's Evaluation and Rehabilitation Center (CERC) are also available for patients with Rett syndrome.