I wanted to post information about Galactosemia so mothers would realize how rare it really is.

This is why I couldn’t breastfeed Ryan and Lillian, but I want other moms to know, it is very uncommon for babies to have this. I wouldn't want someone not to breastfeed in fear of this disease. Trust me; you will know something is wrong if there is a problem even with regular milk formula. You have to use soy based formula for these kiddos.

Ryan had full blown galactosemia at birth and tested this way twice. After a couple of years he has been diagnosed and tested at the less severe form or Duarte Galactosemia. The metabolic doctor said this is rare to change from one to other and he had never personally seen it. God works miracles!

The Duarte form is far less severe than the other form of Galactosemia which can have learning disabilities and a whole gambit of issues attached with it.

When your baby at birth has the heel prick to test for PKU and other metabolic disorders, that is also when they test for Galactosemia.

You should be most concerned if you and your husband both have milk issues, carriers are sometimes symptomatic and if you both are of Irish decedents.

The article I linked to also mentions Italians but doctors never discussed that with us, maybe because it didn’t apply?


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

Thank you, Shawn for sharing this with us! It isn't something I've ever heard of until now.



Michelle

Thats good information. I will admit I went and googled it after I read your post ( I do google everything )
I am sorry your son has this, but very glad for you all its the less severe form.

Thank you Bethany! We are very glad too!