Thursday, January 15, 2009


...some answers! We finally got a call from the genetic doctor on Tuesday. She confirmed what we already thought was going on and that is that Isaac has Duarte Galactosemia. This is the form of galactosemia that would be considered mild. Whereas in Classic Galactosemia the child has none of the enzyme needed to break down galactose, in Duarte Galactocemia the child possesses some of the enzyme needed to break down galactose. In Isaac's case, he has about 1/4 the normal level. The plan is to keep Isaac off of any milk products until he's a year old. At that point we start introducing milk products and have his blood tested to make sure that he's breaking down the galactose. They tell us that they have never seen a child with Duarte Galactosemia not be able to normally eat milk products. So, we're very excited about that! When I was thinking about the possibility of him never being able to have milk products, that seemed so daunting!
Right now he's on soy formula. I would have been able to continue nursing him, but because I had to stop while we were waiting on answers, I lost my milk. I don't like the idea of him staying on soy because of the unnatural hormones and the damage it does to the thyroid. So, I'm trying to research alternatives to soy formula. Does anyone have any suggestions? I even looked into buying breast milk from a milk bank, but it's extremely expensive. We'll be meeting with the doctors in the first part of February to discuss things like this.

In other news, Aiden has gone back to school and really enjoys being back in the swing of things. I think that Josiah misses him, although he enjoys playing with Aiden's toys without getting into trouble with Aiden. Matt has taken several weeks off so it's been nice to have him around. He'll start back to work next week. We enjoyed spending Tuesday in Atlanta going to the children's museum, the acquarium and IKEA. It was kind of our last hurrah before Aiden went back to school.

1 comment:

Ben and April said...

Glad to hear that you have some answers and know how to proceed. Sorry to hear about your supply and understand your concerns about soy formula. Do they make formula that is both soy free and dairy free?

Not sure if you are open to this,but in the book Nourishing Traditions by Sally Fallon, she has recipes for homemade formula. Doubt you doctor would be too open to it, but maybe they would. I have heard and read great things from some who use it.

Anyway, just wanted to throw that out there.

Here is a link and of course if you google it there is more info.

I will be praying for him!