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If your child has galactosemia [guh-lak-tuh-SEE-mee-uh], they will not be able to use a kind of sugar called galactose [guh-LAK-tohs]. Galactose is half of the chemical lactose, which is most common in milk.
Babies and children with galactosemia need to avoid eating or drinking anything that has milk in it, whether from breastfeeding or from an animal. If they get too much galactose, it may damage their liver, kidneys, eyes, or brain.
Most children who have galactosemia can have normal lives if they stay away from food and drinks that contain galactose. However, mild symptoms can still occur even if your child avoids foods and drinks that contain the chemical.
If your child has galactosemia, it may be beneficial to join a support group for people with the disease.
There are several kinds of galactosemia.
If your child has galactosemia, they may have signs that include:
Other complications of galactosemia can include:
Doctors may perform tests to check for galactosemia; some tests include:
Normal newborn screening tests can show signs of galactosemia, including:
If your child has galactosemia, it’s important that they avoid foods and drinks that contains milk, and any other food or drink that has galactose in it, for the rest of their lives. Instead of milk, babies can be given special formula, such as:
Since your child can’t drink milk, or eat anything with milk in it, they will likely need another source of calcium. There are many other ways to obtain calcium without getting galactose.
If you know you have a family history of galactosemia, you may want to talk with a genetic counselor. They can help with your decision to become pregnant.
Many states check infants for signs of galactosemia. If the disease is suspected, stop giving your child any milk products and get a blood test to confirm that your child has the disease.