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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Rett syndrome


Other Names for this Disease
  • Autism, dementia, ataxia, and loss of purposeful hand use
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Your Question

Is it normal for girls with Rett syndrome to scream and cry? Can girls with Rett syndrome be potty trained? Also, is biting other children normal for girls with Rett syndrome?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Is it normal for girls with Rett syndrome to scream and cry?

Yes. It is normal for girls with Rett syndrome to cry. Most parents describe screaming fits and inconsolable crying by age 18-24 months.[1]

You can read more about this in the comprehensive review on Rett syndrome and other MECP2-Related Disorders online by visiting GeneReviews at the following link. GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. 
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=rett 
Last updated: 1/19/2009

Can girls with Rett syndrome be potty trained?

Yes, girls with Rett syndrome can and have been successfully potty trained. The International Rett Syndrome Foundation provides tips on potty training at the following Web page. Contact for the International Rett Syndrome Foundation is also provided below.
http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=82&Itemid=147

International Rett Syndrome Foundation
4600 Devitt Drive
Cincinnati OH 45246
Phone: 513-874-3020
Fax 513-874-2520
Online E-mail Form: http://www.rettsyndrome.org/index.php?option=com_contact&Itemid=509  
Web site: http://www.rettsyndrome.org/  
Last updated: 1/19/2009

Is biting other children normal for girls with Rett syndrome?

While we did not find information regarding this behavior in girls with Rett syndrome specifically, you may find the following resources to be helpful.

The National Dissemination Center for Children with Disabilities (NICHCY) lists many resources for parents, teachers, and family members on behavior in kids with special needs at the following link. Contact for NICHCY is also provided below.
http://www.nichcy.org/Pages/behaviorsuite.aspx

NICHCY
P.O. Box 1492
Washington, DC 20013
Toll-free: 800-695-0285
Phone: 202-884-8200 
Fax: 202-884-8441 
E-mail: nichcy@aed.org
Web Site: www.nichcy.org

There is also a book titled, "The Rett Syndrome Handbook” that is offered through the International Rett Syndrome Foundation that has a chapter dedicated to behavior in girls with Rett syndrome that you may find helpful. You can call 1-800-818-7388 to request a copy.
Last updated: 1/19/2009

References