Rett Syndrome
FAQ

Frequently Asked Questions

The Rett Syndrome Clinic at Cincinnati Children's answers frequently asked questions for patients and families.

What is RETT syndrome?Hide

Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy. It almost always occurs in girls but in rare cases, can be seen in boys. It is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.” Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 female births. It is not a degenerative disorder.

How does my child get diagnosed?Show

Your child will be evaluated by clinicians to determine possible causes for abnormal development and behavior. Based on the findings, the clinician may order different types of tests. If the clinician's suspicion for Rett syndrome is high, genetic testing specifically for Rett syndrome may occur.

What do I do when my child is diagnosed?Show

Once your child is diagnosed, it is important to work with the clinician to determine their needs. Depending on the problems your child is having, the clinician may involve different therapists, medications, nutritional recommendations, and even other physicians.

What can I expect during my visit?Show

Visits will typically last a couple of hours. During this time you will have the opportunity to meet with our interdisciplinary medical team including experts from neurology, behavioral medicine, occupational therapy, speech, transitional medicine, social work and gynecology as well as a registered dietician.

What if I need financial assistance?Show

There are multiple financial assistance programs available including our Family Financial Advocates. There are also waiver programs offered by every state. (Note: Waiver programs can have lengthy waiting lists.)

What about school for my child?Show

Schools have Individualized Education Plans (IEP) to help meet the needs of your child. There are educational advocates available throughout each state to assist in making sure your child’s educational needs are met. Please email rett@cchmc.org for more information.

What resources are available to us?Show

There are multiple resources available for you and your child that vary state to state and county to county. It is often helpful to contact your county developmental disabilities office. Our social worker is also available to discuss these resources. Please email rett@cchmc.org for more information.

Can I get a second opinion without traveling to Cincinnati?Show

Yes. Online second opinions are available to families and patients outside the Greater Cincinnati area (southwest Ohio, northern Kentucky and southeast Indiana). A specialist will review your case and answer specific questions about a diagnosis or treatment options. It’s easy, convenient, and secure. Our case manager will collect your medical records and guide you through the process.

Online second opinions are typically not covered by insurance and cost $850. There may be additional fees if a radiology or pathology specialist needs to review your records. The program is not available in all areas or for every patient, we will work with you to make sure it’s appropriate for you.

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For more information or to request an appointment, contact the Rett Syndrome Clinic.

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