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Caring for infants and toddlers with Galactosemia

(Ages 2 months to 4 years)

Galactosemia Symptoms

Symptoms of Galactosemia in infants and toddlers

At this point, you and your family have discovered so much together, and now you're settling into your new routine and making plans for the future. It's important to continue to be aware of potential new symptoms associated with Galactosemia.

Symptoms of Galactosemia in Infants and Toddlers
Symptoms of Galactosemia in Infants and Toddlers

How will I know if my little one is experiencing a Galactosemia-related developmental delay?

Every child's development is unique. However, there are some Galactosemia-related signs of delayed development—for example, apraxia or dysarthria (e.g., delayed language, inability to move lips or tongue to say words, slurred or mumbled speech)—that might indicate you should talk to your pediatrician.

Explore resources, including tips on talking to your doctor.

Resources

Talking to your doctor matters

Overall, children are 4 times more likely to have delays identified and be enrolled in early intervention programs when their parents discuss developmental concerns with their doctor.

Monitoring needs

Requirements for infants and toddlers

Health complications can show up early and may have a significant impact on development.

2 to 12 months
2 to 3 years

Continued blood testing

After diagnosis, your doctor will likely continue to test for increased levels of Gal-1p, or for levels of galactitol, throughout the first year of your child's life.

Testing for speech/language delays

Beginning around 7 months of age, it is generally time to have your child screened for possible speech or language issues.

A speech therapist may also administer a formal screening assessment that determines your child's capacity for speech.

Know Your Healthcare Team

Meet the team who may look after your toddler's health

Metabolic geneticist

These experts specialize in metabolic disorders. They help to coordinate the right care for your child with Galactosemia.

Dietitian

Your dietitian can offer lifelong advice on your child's diet. At this point, your dietitian can help you plan how to introduce your child to Galactosemia-friendly foods.

Pediatrician

This may be the pediatrician from when your child was first born or a new one—either way, they are trained to diagnose, treat, and provide ongoing care for a variety of childhood illnesses, both mild and severe.

Ophthalmologist

As your child grows, an ophthalmologist can check for cataract development caused by build-up of toxic galactitol.

Speech therapist

As your child learns to communicate, a speech therapist may be needed to help assess, diagnose, and treat issues with speech/language, communication, and swallowing.

Neurologist

A neurologist may be needed to help you diagnose, treat, and manage cognitive (learning, processing, and understanding) or motor delays due to potential complications from Galactosemia.

Galactosemia diet

Getting used to solids, food labels, and the world of feeding toddlers

Galactosemia may have an influence on certain milestones, particularly as it pertains to the adventure of new varieties and textures of baby and table foods, as well as self-feeding.

Click below for more information about a Galactosemia-friendly diet and reading food labels.

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Testimonials

Living with Galactosemia

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References