Child Wellness Wednesday: Galactosemia
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When raising a healthy child, milk and cheese are part of a healthy diet. But from some children, a diet with dairy can not only be devastating, it could be life threatening.
Mom Nicole Casale said, "We brought him home and he lost some weight. They normally lose weight, but he lost a little more than normal."
The Casales had a baby boy. His name was Joseph. He was just days old. A genetic test proved he shouldn't have milk products. They switched him to a soy formula. Their doctor then advised them to look out for a fever.
Casale said, "In the morning, woke up, went to give him his bottle. He felt really warm, and it was 102."
A fever was a warning sign.
Casale said, "We thought we had a baby with a fever, and they come back and say, your baby has meningitis. It just floored us."
It took months for Joseph to recover. His diagnosis, galactosemia.
Casale said, "Galactosemia, it's a very rare, genetic, metabolic disorder. It affects about one in 60,000 people. Both parents have to be carriers in order to pass it to their child."
Joseph is missing the enzyme that breaks down milk sugars.
Casale said, "Instead of the galactose being broken down into energy, it becomes a poison in his body and goes to different areas - cataracts, blindness, brain, liver, kidney damage."
Joseph's hearing was also damaged and he now wears a hearing aid. Other side effects for him may be down the road.
Casale said, "Learning disability, speech, apraxia, motor skills."
There is no cure. The treatment is a diet free of galactose. That means certain fruits and vegetables like tomatoes and chick peas are out.
Some doctors suggest a less strict diet for the kids, but the Casales are not taking any chances.
Casale said, "We are not going to allow him to have tomatoes, watermelon. Your body produces galactose so that is a strike against you."
The Casales are hopeful more research can be done to better understand and treat this disorder.