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."

Tuesday, May 29, 2012

Expanding Menu

Potato continues to be going well.   He has CheeCha puffs, which are potato flour, potato starch, and salt and then puffed.   He has eaten baked potato and mashed as well as fried….none of them in too large of quantity since he still mainly nibbles his foods.   We tried a potato stick by Utz, ingredients were cottonseed oil and potatoes.  He had irrational tantrums that coincided with eating them two times, so we simply threw them away- unsure if it is the cottonseed or a cross contamination issue or what but no reason to take any further chances when we can just move on. 

Normally, I would call the company and be sure that there is no cross contamination risk but that is easier to do when you know which foods you are strictly avoiding.  Many of little man's allergies are different. Dairy- we pulled before he was 6mo.old, already connecting a milk protein intolerance (and history of that with the other boys I knew he would need to avoid until at least around 1yr.), soy we had rechallanged when he was 18mo. because we just were never sure when we tried soy at 5-6mo.old what it was that he wasn’t tolerating in it and since the soy formula we used also had corn- was it the corn syrup in the formula?  Maybe, probably.   A soy challenge was when we first learned some of his reactions result in small intestinal villi damage….possibly more of what is referred to as Enteropathy. (sometimes even called FPIE (without the S)- Food Protein Induced Enteropathy.    Although the reactions are not as acutely severe as FPIES (there is no shock), the effects can be just as serious.  So, we have avoided soy in any forms as well.   We suspect that some of his reactions are this enteropathy where some are the FPIES.  The severe acute FPIES almost seems protective of the more-long-term damage of the enteropathy, because with an acute reaction- at least we know sooner rather than the side effects of a chronic FPIES state he has all too often settled into.  We know we need to avoid dairy, soy, rice and corn.  There are a few others that were bad fails (sunflower, buckwheat ,....).  Thankfully, little man hasn't had a full shock episode from first exposure of a new food. 

Back to potato and the expanding my search for fun ways to serve potato, and a potato pancake recipe, I came across a Pizzelle maker.  Pizelle’s are thin waffles- and can even be made into a cone or a rolled shape to fill.   It was not a cheap kitchen gadget to add to the growing supply but all I could think of was how much he likes crumbs and crisp and that his ingredients are more conducive to producing thin/small recipes than thick/large ones….so I bought it. 

I made him his first pizzelle right away- utilizing a potato starch that I am still hoping is safe (but not sure); but most of all using a baking powder!    We have successfully been using baking soda in his recipes but baking powder has corn starch in it, all except 1-2 brands- Hain is one, it uses potato stach.   With the addition of these ingredients, there is enough to hold together dough to successfully make the pizzelles!  “Waffles”!  he says!  

With waffles, came pure maple syrup.   I had bought some months back so had it in the cupboard, which was a good thing because his brother was having waffles for breakfast and got out the syrup, little man promptly asked "syrup, yes?" And I was able to say "yes, syrup!" He LOVED it!! He ate waffles all day long for a few days!  Noticing a trend here- when he discovers a new safe food, he goes through a typical toddler "jag" and it is all he eats, sometimes all he can think about! 

So, we are expanding his menu and experimenting with the new ingredients.  He now has hemp, millet, safflower oil, arrowroot starch, peaches, cocoa, potatoes, and pure maple syrup!  What is next?  


  1. Pizzelle makers also make great crackers. Smart purchase.

    I would like to suggest Birds Eye frozen vegetables - NOT the steamers, but plain frozen veggies with navy blue stripe. Not all of the varieties are safe, but the ones with a corn-free label are truly corn-free. They are the only veggie we can tolerate besides fresh ones from the farmers market and all four of us are corn allergic. Just steam a small serving and puree it to see if he will eat it. If you have safe oil, add that and some non-iodized salt.

    I would try focusing on finding absolutely corn-free beef or chicken or lamb and safe vegetables. If you have bone broths and veggies to feed him, he'll be getting more nutrients quicker. Also, perhaps his dairy problem was really a corn one. Vitamin enriched milk has corn-derived vitamin carriers that keep the vitamins (usually corny themselves) suspended in the milk - most times it is propylene glycol. Try to find a local farmer that has raw milk (cow or goat) that doesn't use corny detergents or antibacterial salves on the teats or sanitizing solutions in the glass bottles. This is the only way we can tolerate dairy.

    I know so many people that have had issues with their child on Alimentum. I think there is a problem with the corn in it even if it isn't supposed to be. Besides, "protein induced" may not be entirely accurate when it comes to corn. We react to many corn derivatives that experts have told us were safe for us. At the very least, reserve judgement on the protein debate until you are able to draw your own conclusions based on observation of your son. If pressed, any great allergist will tell you that an allergy test is not the gold standard for determining allergies - elimination and challenge are. Listen to your instincts because they are right on the money!

  2. Yep, yep, yep! ;) Such a learning experience with this allergy for sure! Corn is in everything!!