Disclaimer: This book was created after the 1998 Family Conference.  The articles are important to all of those involved with RTS.  This is online without permission from Dr. Rubinstein and the Cincinnatti Rubinstein-Taybi organization.  They would prefer that you call Dr. Rubinstein at  1-800-344-2462 ext. 4621 and request a copy of the book.  I would encourage everyone, especially those with a child who has RTS to call the above number and request a copy of this book.  I have been reassured by Mark Shannon that this book will be sent to anyone who requests it, regardless of country.
All the information from the book is not online (another reason to call and request the book).  Left out are articles which are copyrighted or are not appropriate for the web site (includes list of attendees).  All articles which are deemed “public domain” are included..
Diane Wardlow

Nutritional Issues Related to Rubinstein-Taybi Syndrome

Molly Holland, RD, MPH, CD
Vermont Department of Health
Burlington, Vermont

I want to thank Dr. Rubinstein and Makr Shannon for organizing a wonderful conference here in Cincinnati.  I am attending with my daughter, Malai, who is 19 years old and has Rubintein-Taybi syndrome (RTS).  Both of us have met lots of people and Malai is thrilled to be making lots of new friends.  I hope other families ar having as good an experience as we are!

I was asked to speak today on the topic of nutritional issues of children with R.T.S.  As Dr. Schwartz, the moderator for this session mentioned, I am a Registered Dietitian and work at the Vermont Department of Health as the State Nutritionist for the Children with Special Health Needs Program.  In my job at the state, I oversee a program of community nurtiionists who work with children with a variety of chronic diseases.  I also work with families myself and act as a member of several interdisciplinary teams.  However, I think my greatest learning experience has been as the parent ofa child with special needs, and that is how I have framed my talk for today. I am using the information from an article that I wrote for a nutrition newsletter as the basis for this presentation.  The newsletter is written for nutritonists, other health care providers and parents and all the topics are concerning nutrition and feeding issues for children with special health needs.  However, the newsletter Editor, asked me to write as not only a nutritionist but as a parent, so that others reaidng this article could get a better understanding of a parent’s perspective.  (I was very excited to do this because I felt that it was a great opportunity to reach an audience and “gently” point out issues that I believe many parents encounter.  Since this newsletter was published, I have spoken to many nutrionists who tahnked me for being so open and willing to talk about my own situation.  I always remind these people that all parents have a story, just ask them!

If anyone has questions please feel free to contact me by letter, phone or e-mail.  I will be happy to answer as quickly as possible.  Thank you for this opportunity and I hope you enjoy the remainder of the conference.

An article included in the book:

Nutrition Focus for children with special heatlh care needs
From a Parent/Nutritionist view: Nutrition and Feeding Issues For Two Special Health Needs
(In this book this was reprinted with permission from Nutrition Focus, Vol 11, No. 1, Jan./Feb. (1996) CHDD, Seattle, WA

Replication:
This information is in the public domain unless otherwise indicated.  Readers are encouraged to copy and share it, but please credit The Proceedings for the 1998 International Family Conference on Rubinstein-Taybi Syndrome.

Funding:
UACCDD receives major support from the Hamilton County Mental Retardation Service Levy.  Additional funding sources include: United Way and Community Chest; Maternal and Child Health Bureau and the Administration on Developmental Disabilities of the Department of Health and Human Services; other county, state, and federal agencies; foundations; and individual contributions.
The 1998 International Family Conference on Rubinstein-Taybi Syndrome is very grateful for the generous support of The Special Friends Foundation.

This document was added to the Rubinstein-Taybi web site in November 2000.

If any of the information found on this website does not adhere to copyright laws it is unintentional, please contact dwardlow@uswest.net and it will be removed from the site.

http://www.rubinstein-taybi.org