Diet/Nutrition

Good day RettGirls!

This week we are going to highlight our Diet/Nutrition category at RettGirl.org. We are hoping everyone will find something here that can help their RettGirl with those all important nutrition tips, recipes and products.

Recipes

For those of you who have contact with other families, you know that each girl's little tummy works differently, so we have separated our recipes into separate allergy/tolerance categories.

Quick/Easy- We have several 5-10 minute recipes than you can divide and freeze for heat-and eat-meals on the go or for school.

High Calorie-We are looking for high calorie recipes for those girls that eat by mouth. Easy to make and easy to serve that will help pack on those pounds!

Gluten Free-We have recipes and sites to help you learn how to get that wheat and yeast out of your girl's diet. Many girls, like my own are allergic to wheat and yeast and it took me forever to learn the signs and get her tested. We are always looking for more!

Dairy Free-Learn how to replace those milk products with nutritious alternatives like rice, almond and coconut milk without breaking the bank!

GFCF-Wheat and milk allergies together affect a ton of our girls. Find recipes here or submit yours today!

Supplements

From liquid vitamins to tummy relief medicine. We have many products here that you really are not told about until you hear it from another Rett parent.

Products

Calorie, fiber and protein boosters, grinders, wheat free pastas and more!

Tips

Calorie and fiber tips. Benefits from juices and oils!

Resources

Papers on nutrition, websites and more!

We are always looking for info from you,our experts to help RettGirl grow. Please submit your ideas,tips and recipes today!

Happy tummys! And, please, proceed with caution and make any changes slowly and with medical consent where necessary.

http://rettgirl.org/dietnutrition/

Terri V~For RettGirl

Websites!

Good Day RettGirls!

While building RettGirl.org we wanted it to to be The place to go for those of us living with Rett Syndrome.

Our first desire was to make it a place that families and caregivers could go to find anything they may need to make this journey easier. The lingering thought in the forefront of all of our minds was that we did not want anyone to ever have to go through what we did when our girls were diagnosed.

We searched the internet and books and never found anything in the same place or anything that helped us live with Rett Syndrome. You can live with it and we are determinded to make RettGirl the place to go to find anything you may need.

We have complied a list of helpful websites in many areas and we want to make sure that everyone knows what is out there to help you and your girls.

In our Resources section we have a useful links to other Rett Syndrome Organizations:

Rett Syndrome Research Trust

International Rett Syndrome Foundation

Israel Rett Syndrome Center

Mikyla-Cure

Rett Syndrome Association (UK)

Rett Syndrome Community Foundation (North Carolina)

Rett Syndrome Research Assistance (Ukraine)


We also have links to many General Disability Resources that no one seems to have handy. There are so many services provided by all these organizations. We encourage you to check them out!

Supplemental Security Income
www.socialsecurity.gov/ssi/text-child-ussi.htm

National Dissemination Center for Children with Disabilities
www.nichcy.org/Laws/IDEA/Pages/Default.aspx

Worldwise Education and Awareness for Movement Disorders
www.wemove.org/rett/

The Arc of the United States
www.thearc.org/NetCommunity/Page.aspx?pid=183

Special Needs Financial Advocates
www.snfadvocates.com/

Special Needs Advocate
www.specialneedsadvocate.com/

My Child Without Limits
http://www.mychildwithoutlimits.org/


But no it doesn't end there! We also have links to Product Resources! Adaptive equiptment,supplies,therapy tools,toys,clothes and more!

http://www.attainmentcompany.com/

http://www.enablingdevices.com/

http://www.adaptivemall.com/

http://www.especialneeds.com/

http://www.kidscopetoys.com/

http://www.abilitations.com/

www.familyvillage.wisc.edu/at/adaptive-clothing.html

http://www.dragonflytoys.com/

In our new School Section we have links to several Free online games for our girls as well as their siblings.

http://www.seussville.com/ -Dr. Seuss games, books, etc.

http://www.theteacherscorner.net/- worksheets for all academic areas, daily and monthly themed events that parents can download to use at home.

http://www.tinsnips.org/ -educational resources for autism.

http://www.busyteacherscafe.com/ -educational resources, parent friendly.

http://www.mathisfun.com/ – math website.

http://www.iknowthat.com/ – interesting fun and educational.

http://www.toonuniversity.com/ – online games.

http://magma.nationalgeographic.com/ngexplorer/index.htm – exploring the world.

http://www.kidsastronomy.com/solar_system.htm – educating kids about the solar system.

http://www.thekidzpage.com/ -free online games, puzzles.

http://www.timeforkids.com/TFK/kids – based upon the Magazine but Kid Friendly.

http://primarygames.com/puzzles/puzzles.htm – a fun place to learn!

http://www.earobics.com/gamegoo/gooey.html- games that uses earobics.

http://www.squiglysplayhouse.com/ArtsAndCrafts/OnlineColouring/index.html – coloring page website.

http://www.kidsplaypark.com/games – educational games.

Just click on our Media section and it will take you to Websites for:

Books

Education

Flashcards

The Gluten Free Mall

Communication Tools and so much more!!



This is just part of the many resources we have for our families at RettGirl. As always, we hope you will find whatever it is you are looking for at RettGirl.org and if not, let us know and we will do our best to find it for you!

Terri V~For RettGirl

RettGirl Resources!

Good Day RettGirls!

We hope everyone had a wonderful Holiday week.

This week we wanted to make sure that everyone know about our Resources page at RettGirl.org and the abundance of information we have there for you! It has taken alot of time and effort to get this all in one spot and at your fingertips, and we plan on adding more soon. It is our mission to be the GO TO place for all things that affect our girls!

We have information on:

RESEARCH

Rett Syndrome Research Trust

Website: http://www.reverserett.org/
Blog: http://www.rettsyndrome.wordpress.com/
Newsletter: RTT Watch
Twitter: www.twitter.com/rsrt

OTHER RETT ORGANIZATIONS:

International Rett Syndrome Foundation
Israel Rett Syndrome Center
Mikyla-Cure
Rett Syndrome Association (UK)
Rett Syndrome Community Foundation (North Carolina)
Rett Syndrome Research Assistance (Ukraine)
Stitching Rett Syndroom (Netherlands)

PAPERS ON RETT SYNDROME FROM SPECIALISTS:

Multi-Modal Communication Strategies for
Children Who have Rett Syndrome
Linda J. Burkhart

Optimizing Nutrition for Girls Affected with Rett Syndrome

Sara-Jane White, Doctor of Naturopathic Medicine

ABOUT “GIRLS WITH RETT SYNDROME”

LETTER FROM RJ COOPER – Pioneer in Assistive Technology
www.rjcooper.com

Back to School Tips From Parents:

Back To School Strategies for
Children Who have Rett Syndrome
GirlPower2cure

How to Adapt with PVC

PVC Assistive Tech

Websites

We hope you find many things you need here. As always we welcome your input. We could not have built this list without you!

We are truly dedicated in helping new and existing families live with Rett Syndrome with the most information and support possible.

Terri V~ For RettGirl