When I spoke to Andy's GI doctor a week later, I asked him if I could use lactose-free products for Andy, he told me yes. Andy has been using lactose-free milk, cheese and ice-cream for a month. When I next saw the rehab doctor, she further informed me about maybe trying to take Andrew casein-free, instead of just lactose-free.
She explained that lactose is the milk protein, and casein is a milk sugar. She said sometimes, the milk sugar is the problem, not necessarily the lactose. She said the only way to remove casein from Andy's diet is to remove all dairy products- completely. Lactose-free items still have casein in them, the milk sugar. She said often times if you are trying to remove lactose from your diet, you can safely do this by removing all casein, because where there is milk sugar, there is usually lactose.
I added that Andy doesn't get diarrhea when he has lactose, so I don't feel he absolutely has to be off lactose. However, he has been less fussy, but possibly due to his new anti-seizure meds. They have a side effect of helping curb irritability. I will continue to limit Andy's dairy, and see how he responds when he has a piece of cheese pizza or ice cream. If he becomes very fussy right afterwards, we may need to eliminate all dairy.
Luckily, Andy isn't a big yogurt kid, or milk-drinking kid. But it is when we have pizza, that lactose-free cheese may not be enough to keep the fussiness away. He does get a bit of gas after having dairy, so it could be making him irritable at these times. I need to observe further to know for sure what his diet needs to be.
The main take-away message I got from the doctor was, "When Andy gets REALLY fussy, what did he just eat?". And keep in mind a list of these foods to avoid.
