Okay you get a second post today because I actually wrote most of my last post the day before, but I was just lazy and went to bed early before posting it.

Food Trials

My daughter has FPIES aka Food protein-induced enterocolitis syndrome, it is a rare food allergy. http://fpiesfoundation.org/ (for more information)

So far she reacts to Oats, Wheat, Rice, Broccoli, Pineapple, and Corn. Most of her reactions follow the typical FPIES reaction of severe vomiting after 2 hours of consumption, along with change in temperature, pale skin, restlessness, gassy, and diarrhea. She does not have any IGE reactions to foods yet (so no hives, or anaphylaxis).

We are doing food trials this month. That’s when I introduce new foods to her one at a time, and wait… I wait for her to get sick. So far with only a few foods on her list, we are pretty good, but the foods she has reacted to are generally found in almost everything. When I food shop for her, I have to read ALL of the ingredients, because I swear that the baby food companies hide things like RICE and OATs in EVERYTHING! (No seriously, go read a baby food package, on the outside it will likely say the fruits and veggies it has, and it will leave out the oats and rice that thicken it).

Here is a sample of what we buy for our little girl

Notice how certain foods have a giant T written on them? Those are new foods, with new ingredients we have not tested. The ones with out the black hand writing are safe foods. Quinoa has been a life saver for us since most baby foods have oats or rice in them to thicken them when your baby gets older. We also recently passed puffed millet. So now she can have some cereal that she can pick up herself.

I am lucky though. My baby has safe foods. There are other parents who have children who are literally allergic to everything. My daughter used to react to my breast milk, she spit up so much and I would tell the doctor about it but since she was not in any significant pain, they said she was okay. But once I stopped eating oats, wheat and rice, she stopped spitting up and gained a ton of weight. *listen to your gut instincts parents*

This is my daughter, Lillian, she is 13 months old this month. (January 2019)
Lily’s birthday cake was actually just ice cream with whipped cream on top (2 of her safes)

Why am I posting this? Well – when I first thought my daughter had a food allergy, the doctors seemed confused about the symptoms. It is considered a rare disease. I joined FB groups for it and did a lot of research. And like many parents of children with FPIES, my daughter’s doctors didn’t know how to handle this, or test for it (there is no test currently). So I am writing this to connect to others – if you have a child and you suspect a food allergy but the doctors won’t do anything, you are not alone.

I found a great support system on facebook groups. Just remember to not be afraid to speak up. You know what is best for your baby and you know what is normal and what is not normal.

Lily, January 2019

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