Babies are first diagnosed with galactosemia during the newborn screening process, which is done in all 50 states. After the initial result it will be sent for further testing and confirmation. During that time mothers will need to stop breastfeeding and start feeding the baby Soy (or other diary free) formula.
The newborn screening results can take anywhere from a few days to a week or more. Some children are diagnosed before any symptoms begin, some will have several different complications – that usually improve once a dairy-free diet is started, and still others may show some symptoms even without being fed breastmilk.
The following complications can occur immediately after birth. Once your baby stops consuming breast milk or dairy formula these symptoms will likely resolve.
After the acute complications are resolved your baby may experience ongoing complications because the body continually makes endogenous galactose.
There is a chance your baby’s primary physician may not be familiar with galactosemia, and that’s okay. You’ll be referred to a local metabolic specialist who will see your baby regularly and do the necessary assessments and testing as your child grows. The first appointment will likely feel overwhelming, and include several different individuals including: a metabolic specialist, a geneticist, a nutritionist and sometimes a social worker. Your baby will likely see the specialist every 6 months for the first few years of life.
Galactosemia Toolkit for Newly Diagnosed Families
Doctor Discussion Guide: Managing Galactosemia by Life Stage
Galactosemia: A Tale of Two Pathways—A brief overview of the galactose metabolic pathway
Top Three Ways to Advocate for Your Child
Reading Labels: 4 Easy Steps to Label Reading
The Galactosemia Foundation’s informative guide gives you the tools and resources you need to be the best advocate for your child.
Stay in the loop and get updates.
Sign up for the Foundation's mailing list
Cookie | Description |
---|---|
cookielawinfo-checkbox-analytics | This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics". |
cookielawinfo-checkbox-necessary | This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary". |
cookielawinfo-checkbox-performance | This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance". |
cookielawinfo-checkbox-preferences | This cookie is set by the GDPR Cookie Consent plugin to check if the user has given consent to use cookies under the "Preferences" category. |
PHPSESSID | This cookie is native to PHP applications. The cookie is used to store and identify a users' unique session ID for the purpose of managing user session on the website. The cookie is a session cookies and is deleted when all the browser windows are closed. |
viewed_cookie_policy | The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data. |
Cookie | Description |
---|---|
_gat | This cookies is installed by Google Universal Analytics to throttle the request rate to limit the colllection of data on high traffic sites. |
YSC | This cookies is set by Youtube and is used to track the views of embedded videos. |
Cookie | Description |
---|---|
bcookie | This cookie is set by linkedIn. The purpose of the cookie is to enable LinkedIn functionalities on the page. |
lidc | This cookie is set by LinkedIn and used for routing. |
Cookie | Description |
---|---|
_ga | This cookie is installed by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assigns a randomly generated number to identify unique visitors. |
_gid | This cookie is installed by Google Analytics. The cookie is used to store information of how visitors use a website and helps in creating an analytics report of how the wbsite is doing. The data collected including the number visitors, the source where they have come from, and the pages viisted in an anonymous form. |