Dedicated to our galactosemic children

Galactosemia Websites

Wikipedia Defination http://en.wikipedia.org/wiki/Galactosemia

GANES (Northern State Association) http://galactosemia.com/

Parents of Galactosemic Children, Inc http://www.galactosemia.org/

Genetics Home Reference Page http://ghr.nlm.nih.gov/condition=galactosemia

NORD Inspire (Blog site for various rare diseases) http://www.inspire.com/groups/rare-disease/

Love Baby Carys is a baby boutique with a purpose. A portion of the items for sale on the site goes to the Parents of Galactosemia, Inc.  http://www.lovebabycarys.com/

 

 

Medical Resources

Emory Genetics  http://genetics.emory.edu/

Children's Health of Atlanta Genetics Center http://www.choa.org/default.aspx?id=6513

Georgia PKU Connect http://www.georgiapku.org/

Georgia Newborn Screening Program http://health.state.ga.us/programs/nsmscd/

March of  Dimes  http://www.marchofdimes.com/home.asp

 

 

Feeding Clinics, Speech/OT, etc..

Marcus Institute (Atlanta, GA)  http://www.marcus.org/default.aspx?id=2

Scottish Rite Craniofacial Center (Atlanta, GA) http://www.choa.org/default.aspx?id=249

Walker Therapy Center (Dawsonville, GA)  http://walkertherapy.com/

Comprehensive Therapy Children's Center (Canton, GA) http://www.specialkidstherapy.com/ 

 

 

Milk Challenge Information for Duarte patients

Most milk challenges are done at 6 months of 1 year of age. Emory Genetics is who we were sent to for the milk challenge. Bloodwork is suppose to be drawn before the challenge and then at the end to check enzyme activity.

A statement from Emory Genetics-

At Emory Genetics in our Metabolic Center we do decide to restrict galactose for the first year of life and then do a "milk challenge" where the milk is added to the child's diet for three days and then blood is obtained to measure the Galactose-1-phosphate level, which is a metabolite that builds up if an individual can not break down galactose. If the Galactose-1-phosphate level is normal, then the child no longer needs to be on a galactose restricted diet. Galactose is restricted for the first year because that is the time in a person's life where the majority of his/her calories are coming from a source, lactose that contains galactose. As the baby grows the relative amount of galactose in their diet decreases. (http://genetics.emory.edu/ask/question.php/1057/)

 

Medical Insurance, Food Stamps, Formula Help, and Other

Georgia Medicaid  http://www.georgia.gov/00/channel_title/0,2094,31446711_31944826,00.html

     Medicaid overs health insurance for children in Georgia. They have two types of Medicaid, Amerigroup and Wellcare. Both are very similiar and doctors in different areas of Georgia take one or the other. Most recommend Amerigroup over Wellcare. Both programs are available depending on your income.

Children with Special Needs Office http://health.state.ga.us/programs/cms/

     CMS will help you qualify for a different type of Medicaid in GA that doesn't require referrals for medical test (CMO exempt). CMS will also help you get baby formula.

Babies Can't Wait   http://health.state.ga.us/programs/bcw/

     This organization will help from birth to help you find the resources needed like doctor referrals, developmental delay test, etc...

Georgia WIC Program  http://health.state.ga.us/programs/wic/

     The WIC program will provide you with vouchers, depending on your family income, to buy needed baby formula and baby food. Many find it very helpful since most formula for galactosemic children is very expensive.