Dr. Helm walked in the room and immediately complemented us on the TWO POUND WEIGHT GAIN since the last time he saw her, six months ago. He was very pleased! I laughed and told him it's all that Neocate she drinks! He asked me about her diet now because it has to be from more than just the Neocate. I started listing her foods and he was shocked that we've had so much progress. We've got a great little menu going, I was told!
I had three things on my list to discuss today.
- Soy: I've been really irritated and confused with Kara's soy intolerance lately and the more I learn, the more confused I get. I asked him about it and his thoughts on what we can do since she never had a "classic" fpies reaction. He explained it like this: soy oils and soy lecithin are made from the fats from soybeans. They don't contain proteins so she should be able to handle this so we can start trying it in small amounts. We have to stay away from anything with soy in it that doesn't say oil or lecithin, as she could have a reaction from the soy protein. I'm not sure how Kara is going to do on this, but I'm willing to try as it would open up a whole new window of possibilities. A few months ago when she was eating her barley cereal three times a day she was really having a hard time. One of the things we were convinced was causing the problem was the soy in it so we stopped, and stopped ALL soy since that day. Looking at the barley box, it contains soy lecithin so if we find that she can handle lecithin foods, it's a whole new puzzle that I don't think we are going to touch regarding the barley episodes months ago. Some FPIES kiddos have problems with both - the soy oils and the proteins. Kara could be one of these but it's a risk that we feel is going to be safe enough to try. She was IgE negative to soy, meaning that it isn't a "true" allergy like a peanut allergy is, but she never had the classic vomiting til shock, FPIES reaction that she had to the rice and oat. I'll trial it slowly and safely and I'm already nervous, reading labels on foods that she could have potentially had tonight, had I wanted to start the soy trial yet. Wow. I think I could have written an an entire post on soy alone!
- Dairy. Our other forbidden. Kara has never actually had dairy other than an Enfamil formula for about a week at a year old. We don't know if she has FPIES to dairy or not, we just know that her IgE levels went up from six months to one year giving us enough information to stay away from it. I asked Dr. Helm today if it's a lab we could run again, just to know if it rose again. He said we could but it would be better to wait for a year from the last one. I explained why I was curious about these levels - dairy is in a lot of cooked foods - most breads, for example. He gave me the go ahead to very slowly and cautiously let her try it and see where she's at - only foods that are cooked and have dairy listed towards the very bottom of the ingredient lists.
- Neocate. Due to Kara thriving, and her love of her bottle, I asked him how much Neocate she should be getting in a day. He wants her on around 18-24 ounces a day still. She's on anywhere from 24-30 ounces currently so we aren't too far off. My goal I think will be to get 6 ounces in her for breakfast, lunch and dinner, like you would a glass of milk, and then fill in with water and juice in between, just like you would for any child.
That's awesome Kendall!! I was thinking about you guys today wondering if you were going to get the answers/"go-ahead" that you had wanted. Such good news! :)
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