KBG syndrome

Have feeding difficulties been reported in people with KBG syndrome?

While feeding difficulties have been mentioned in a few reports about people with KBG syndrome, the exact nature of these difficulties has not been well- described. For example, one article discusses a female patient that was “slow to feed” leading to failure to thrive as an infant, and another female that "had feeding problems." Another article discusses a male patient that "had neonatal feeding difficulties" and his twin brother who had "feeding difficulties similar to those of his brother." A third article described a male infant for which "poor feeding and suck were noted during the first 3 months." We are not aware of information regarding the cause of feeding difficulties in some people with KGB syndrome. It is unclear whether the feeding difficulties have a common cause or are due to specific features in each person (e.g. neurological deficits, poor muscle tone, delayed motor development, or abnormalities within the oral cavity or upper airway).

Last updated on 05-01-20

How can I access more information in the medical literature about KBG syndrome?

You can find relevant articles on KBG syndrome through PubMed, a searchable database of biomedical journal articles. Although not all of the articles are available for free online, most articles listed in PubMed have a summary available. To obtain the full article, contact a medical/university library or your local library for interlibrary loan. You can also order articles online through the publisher’s Web site.

Using "KBG syndrome" as your search term should help you locate articles. Use the advanced search feature to narrow your search results. View a sample search for articles about KBG syndrome here.

The National Library of Medicine (NLM) Web site has a page for locating libraries in your area that can provide direct access to these journals (print or online). The Web page also describes how you can get these articles through interlibrary loan and Loansome Doc (an NLM document-ordering service). You can access this page at the following link: http://nnlm.gov/members/. You can also contact the NLM toll-free at 888-346-3656 to locate libraries in your area.

Last updated on 05-01-20

Name: American Association on Intellectual and Developmental Disabilities 501 3rd Street NW Suite 200
Washington, DC, 20001, United States
Phone: (202) 387-1968 Toll Free: (800) 424-3688 Fax : (202) 387-2193 Url: http://www.aaidd.org
Name: FACES: The National Craniofacial Association PO Box 11082
Chattanooga, TN, 37401, United States
Phone: 423-266-1632 Toll Free: 800-332-2373 Email: faces@faces-cranio.org Url: http://www.faces-cranio.org/
Name: Children's Craniofacial Association 13140 Coit Road Suite 517
Dallas, TX, 75240 , United States
Phone: +1-214-570-9099 Toll Free: 1-800-535-3643 Fax : +1-214-570-8811 Email: contactCCA@ccakids.com Url: https://ccakids.org/
Name: World Craniofacial Foundation P.O. Box 515838
Dallas, TX, 75251-5838, United States
Phone: 972-566-6669 Toll Free: 800-533-3315 Fax : 972-566-3850 Email: info@worldcf.org Url: http://www.worldcf.org/
Name: National Institute of Dental and Craniofacial Research Building 31, Room 2C39 31 Center Drive, MSC 2290
Bethesda, MD, 20892,
Phone: 301-496-4261 Toll Free: 866-232-4528 Email: nidcrinfo@mail.nih.gov Url: http://www.nidcr.nih.gov/
Name: KBG Foundation PO BOX 199
Lehi, UT, 84043,
Email: http://www.kbgfoundation.com/contact-us.html Url: http://www.kbgfoundation.com/home.html

Connect with other users with KBG syndrome on the RareGuru app

Do you have information about a disease, disorder, or syndrome? Want to suggest a symptom?
Please send suggestions to RareGuru!

The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

People Using the App

Join the RareGuru Community

To connect, share, empower and heal today.

People Using the App