Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Wednesday, May 25, 2011

I am sure you have no idea...

I am sure I had no idea either.   I am almost embarrassed to admit my ignorance towards corn and it's allergens.  I am sad when I think of the months I kept my Little Man on a product that's base is corn (much less the "other" ingredients and vitamins in it that are derived from corn...that product being something that is supposed to sustain the life of a severely allergic infant/young child who can not tolerate a complete diet.  I was told it was not possible to react to a "hypoallergenic" formula.   Keeping in mind that, hypoallergenic does not mean non-allergenic. Non-allergenic = no such thing. I have learned so much. 

I am not the only one who has had to learn on their own.  I wanted to share some advice from some other educated corn allergic people.   My first go-to was the Corn Free website.  This women spent painstakingly oodles of hours putting together extensive lists of ingredients, that have almost memorized in my efforts to keep my son safe. 

I have since joined a community on babycenter where moms come together to share their experiences and a very knowledgeable mom posted this: Considerations when dealing with corn allergy:
"Here is a short list of items that I have in my son's allergy binder. It is aimed at anyone who has to care for him should something happen to me, and focuses on things that I thought people would normally not think of. Feel free to add your own thoughts.
- NO dextrose IVs
- NO latex balloons, gloves, etc. (powdered with corn starch)
- NO vitamins
- NO rubbing alcohol
- Kosher for Passover items are generally considered safe in the corn-free community, but some are not. Generally, those designated Kosher for Passover by the Orthodox Union are safe. These will have a “U” inside an “O” and a “P” to the right. Kosher for Passover items are generally available in the early spring, though some are available year-round.
- His medicine must be compounded corn-free. You must do the research on the active and inactive ingredients because most pharmacists do not understand what all is made from corn.
- Grocery store produce and sometimes meat are washed with a corn-derived citric acid wash. To counter the effects of the produce wash, the produce must be washed and scrubbed with baking soda. Before buying meat, you must check with the store’s customer service to make sure they do not use any corn derivatives in their wash (mostly an issue with poultry).
- Some produce is also waxed. He CANNOT eat the outside of these commonly waxed items unless they are farm-fresh and verified to be wax-free. It is required by law that retailers display signs identifying which items have been waxed. Our grocery store’s list is: apple, cucumber, grapefruit, lemon, lime, melon, nectarine, orange, parsnip, peach, pepper, pineapple, plum, rutabaga, hard squash, sweet potato, tomato, yucca root.
- Vitamins are added to cow’s milk most often using corn oil or alcohol as a carrier. He CANNOT drink milk unless it has been confirmed with the manufacturer that no corn products were used in the vitamin addition.
- Corn can also hide in cheeses. Potential sources are: annatto (this yellow coloring often is extracted using corn oil or alcohol), enzymes or cultures (often grown on corn), and salt (iodized). There are very few cheeses safe for him and most are foreign.
- When contacting companies to verify corn-free status, you must specify that it does not matter if the corn protein is present or not, if it ever came from corn he can’t have it.
- In recipes, substitute potato starch for corn starch."

And, I have recently found a community on facebook that is run by Corn Freedom.  Her son has a severe corn allergy, and she too has had to learn everything to keep him safe, and is thankfully sharing it.   I wanted to share some advice that she recently posted:
When speaking with a "professional" whether in a store or on the phone always remember they are SURE of themselves. They are SURE there is no corn because to the best of their knowledge why would peppers be coated with corn? Why would peaches be coated with corn? Tomatoes? Why is it in their HUMMUS made with LEMON JUICE that's not labeled as concentrate and it's from the green bottle with the yellow top. They simply don't know. So YOU be SURE and don't buy it or don't eat it until you press for the information you are looking for.

I sometimes believe that there is no corn in a product because the person I am speaking with is so confident in their response. They are not thinking of our derivatives list, they are thinking about logic. There is NO logic on where corn is located in your products. It is squeezed into every vitamin, additive, flavoring, coloring, sweetener, lotion... no one who didn't need to know will actually know about these things.
Each time you educate yourself a little more you will realize that it's not them wanting to hurt you or they are less intelligent, it's just they simply do not know. So keep plugging along and if your questions are not answered by the first person, push for the next. Your health and the health of your family comes before being embarrassed by asking questions.

There are a few other useful websites for references, there is a lot you just need to learn on your own (unfortunately).  I hope this post can help guide some of that learning process for those just beginning.  I learn more everyday, through my son and for my son.  Corn allergy awareness is on the rise, but we (corn allergic parents and individuals) need to continue to raise the awareness of the realities of a corn allergy.

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