Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Wednesday, May 19, 2010

more food allergies?

So, Abby had a food panel at her doctor appointment on Monday to see if she is still allergic to eggs and nuts. I was hoping she would have outgrown her allergies, but they just called and said she still is severely allergic to eggs and nuts, but is moderately allergic to milk and soy. What? For lunch today, Abby had a cheese stick, apple, soy nut butter sandwich, and milk. She eats a lot of soy because she can't eat nuts, and she gets a ton of dairy. She has never had any reactions. Could her stomach be hurting when she eats/drinks milk and soy and I not know it? Ahh! Her doctor said she should only consume them now in moderation. I am thinking about going to an allergist because I want to make sure that is right. With egg, nut, milk, and soy allergies (and acid reflux restrictions), there's not a whole lot left. The girl likes to eat, but I'm running out of things that I can give her.

Any ideas on the milk allergy thing? I thought kids usually outgrew milk allergies as they got older. She gets a food panel every year, and this is the first time soy and milk were a problem.


  1. hi! we just got avery hooked on rice milk (vanilla flavor)! she cant do milk and hates soy. milk gives her eczema. she can tolerate a little dairy here and there but I try to keep it very minimal. she loves this rice milk though-and its enriched with calcium and all kinds of good vitamins. plus its vanilla flavored and 90 calories per serving and even though thats not very much, i think its helping her maintain her weight. not fair that our girls should have issues and allergies on top of rett syndrome!

  2. Oh no! That is frustrating - especially that it would come up unexpectedly like that. I would probably also be inclined to see an allergist to get it confirmed. However, it seems like when they go in looking for stuff like that, they tend to find it. Maybe I'm being a little cynical, though.

    I agree with Erica, it's not fair that she has allergy issues on top of having Rett. :(

    Also, we gave Joshua rice milk until we were able to switch back to real milk (which, of course, he won't drink now). I hope you can find something good.

  3. I think rice milk will be the way to go for now. I am still going to call an allergist and make an appointment. The nurse told me that allergists don't find blood tests to be 100% accurate. I don't want to change her diet if I don't have to.

  4. Hi Ann Marie. We have Cata on a gluten-free, casein-free diet. She hasn't had reflux since starting this and is medication free. Because of the casein free, I had to learn about milk substitutes. Cata did not like rice milk or hemp milk. She hated almond milk. We have had great success with coconut milk. They make it in original, unsweetened and vanilla flavor. We get the original flavor and mix it with coconut keifer (they have strawberry and vanilla flavor). She really likes it. The brand is So Delicious. They also make coconut yogurt which Cata loves and sorbet which we haven't tried yet.

  5. Well, if you want to try fresh goats milk, I can give you a few contacts. It's a bit controversial, but we drank it for a few years and loved it.
    There is also a product that is sunflower seed butter. I've never tried it, but imagine that is has the calories that you are looking for in the soy spread. ((hug))

  6. Why not try a bionutritionist, or my pastor who is a naturopathic doctor? I'm recommending that in addition to the allergist, not instead of the allergist.