So shortly after little ET was born, the metabolic screen came back indicating that she has Galactosemia. The NICU doc wasn't worried said she had no symptoms and it was probably a false positive. The next day ET threw up the entire formula feed, but had been okay with the breastmilk feeds. So I took the opportunity to tell them that I and older dd M were definitely dairy intolerant. So they switched her to Enfamil's Lacto-free formula. I think she was getting so little formula at the time that it didn't matter. I stayed the required night for "rooming in" to get her released. Turned out she was a gassy baby - but she did well with the feeds.
We were home a couple days and went in for a weight check - told the ped about the Galactosemia results, and the in-hospital lab results which supposedly came back mostly normal - but that they had sent off more blood for more labs to be drawn.
A week after we were home the 2nd results came in and confirmed that she had a mild variant of Galactosemia - not the Classic form. With those results in, I stopped pumping and she went total on formula because Human breastmilk has as much if not more galactose in it than cow's milk. So we stuck on the Lacto-free until we discovered we'd have to drive 10 miles to get more and that the company was discontinuing that product. So we tried the Similac Sensitive AR. Well doesn't she start projectile vomiting on of all days a Friday afternoon about 10 minutes after dh leaves me with the kids for the afternoon.
Panicked I called the Ped - told them what was going on, and that I had researched and found out that neither Lacto-free - nor the Sensitive AR were recommended for kids galactosemia - charming! So I switched her to soy. The spitting up stopped pretty quickly. But then the constipation started up pretty quick too - and extra gas too. So with the constipation and the gas, the ped suggested and I agreed gas drops. A few days later she developed a nasty looking heat rash. When the heat rash didn't disappear after a day or 2, I suspected the soy. So I researched again and found that Nutramigen was the next step for formula if there were issues with soy.
Well guess what ... the gas drops have galactose in them... the nutramigen and Alimentum have galactose in them. I can't win. I've been wondering why she's been spewing again... well I got my answer tonight in the form of the above. Charming.
I'm at my wits end here. The Ped has no clue on the galactosemia thing, but then its so rare. And we're still waiting on further genetic testing to find out what she really has and how she can be treated... I assume from there we'd be sent to a nutritionist.
I fee like I'm doing all the wrong things here, its crazy.