Living with Galactosemia

When my son was born, it was easy to assume that everything would be perfectly normal. He was a little overdue, and a big baby. But he was perfectly healthy. He had a really slow start to breastfeeding so we did mostly pumping and bottle feeding however it soon became apparent that there was something very wrong with my son.

It started with him refusing to eat. And when we could get food into him, he would begin to vomit right away a rash would appear, as well as diarrhea and he would seem to be utterly miserable. At this time he was going in to see his doctor every week. Then we started to notice that he was loosing weight rapidly and looking very ill. Finally through a painful process of elimination and testing we knew what was wrong with him. Galactosemia.

While hearing about lactose intolerance in children and even in adults is very common, i had never heard the term Galactosemia before. Much less knew and understood what that was. With much research i learned that this is basically an allergy to galactose. Galactose is the broken down form of lactose, which is found in milk products and mammals. It cannot be digested by people with Glactosemia and as such, builds up in the cells and becomes toxic.

Thankfully we caught the disease in time. The consequences of late term diagnosis could have been terrible. Including liver disease, cataracts, mental retardation and even death. But we were lucky. My son recovered soon after being put on a formula specialized for children with milk allergies. However any long term effects have yet to make themselves known. We don't know if later on there will be complications due to the time he ingested breast milk.

Because my son cannot digest milk products, its been a battle learning to cook without diary and making sure that he gets proper nutrition. Its amazing to see exactly what you can make that requires milk without putting it in there. Almond milk and Rice milk contain no lactose and he enjoys having cereal with them. Soy based ice creams and fruit juice Popsicles are popular in the summer around our house. Instead of hot chocolate, we make hot tang and hot tea and cider in winter.

While it has been a huge challenge learning to live with a child who has a disease such as Galactosema, we manage. My son is now 3 years old and very healthy. Between supplements and substitutes, we manage to make sure he eats enough calcium and other enzymes that are generally found in dairy. And while I myself often miss having ice cream, its a small enough change to make for the health of my child.