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."

Monday, March 26, 2012

Corn Freedom

Before I update about how the Alimentum RTF trial went, I wanted to take the opportunity to speak a little more about a corn allergy- the reason why we've been without a formula for so long.   

Awareness needs to be raised for corn allergic individuals.   A corn allergy is a difficult one to live with.  A corn allergy is overwhelming when you first realize that is what is causing reactions to trigger.  I read everything I could in journal articles but quickly found there wasn't enough information or enough known about the extents of a corn allergy; although there are a few good ones that give you a starting off point.  I learned the most from other corn allergic people sharing their stories- things they learned, successes, fails, reactions, recipes....there are growing numbers of corn free forums/support groups of people sharing this information.  These forums at least give you a beginning place to start and were a life-saver for me to helping get little man to a baseline and stop the inflammation in his body.  

One site recently did a blog post on Corn Free Basics- a sort of survival tip for starting with a corn allergy on: Living it up Corn Free.   You can read through this quickly and think "this isn't so hard"- well, consider that most of the survival items, little man is allergic to soy/legumes, dairy, wheat, rice,....

So how does a child with multiple food allergies survive and thrive?  Formula becomes a life line.  Unfortunately not always so for a corn allergic child, formula is in a corn syrup base and for many corn allergic children, this poses a severe problem.   Thankfully this is not the case for all children.   Some corn allergic follow what the is coined "corn lite" and don't seem to have noticeable or health threatening reactions from  corn derived ingredients in trace or contamination amounts, including formula.   These unfortunate corn allergic individuals can fortunately tolerate corn lite ingredients without it causing more harm than good. I've also heard FPIES families that have little ones with problems with the corn-y ingredients but after gut rest can handle corn-y ingredients (corn-lite) but still can not do full corn ingredients. 

With a corn allergy, my personal "basics" surrounds being aware of all of the things that are corn derived and that could cause a reaction -- and then weighing how much that food is needed in the body with the risk of reaction and then deciding on if that benefit is worth the risk (of attempt to trial/introduce it).   For an infant/toddler with severe multiple food allergies on a limited/restricted diet, the formula benefit is worth the risk of a trial.   Trialing the formula is necessary, but that is not to be confused with living on a formula that a child is not thriving on.  Our little man fell into that category: 5mo. of elemental formula's with increasing symptoms, progressing inflammation, decreasing protein and iron stores from the malabsorption secondary to the inflammation, generalized low quality of life for a little guy that threw up almost daily and lived many hours of the day in pain. Then it becomes about choosing the best for your child's quality of life and disease state- if the formula is doing more harm than good, then a discussion with the doctors and dietitians is in order- to of course rule out other conditions being in conjunction with and complicating the FPIES but also to find a suitable replacement for the formula. Keeping in mind that the good the formula does is well past caloric nourishment, it is about nutrients nourishment, so that needs to be weighed when considering reactions, symptoms and trace/contamination trigger exposure from the formula. 

Another great and informative site is Corn Freedom, a mom of a corn allergic boy (not FPIES) that has a online support page. She has asked any and all corn allergic families to help her, help the corn allergic.  To get corn recognized as a top allergen, to have it labeled, to have doctors recognize what illnesses corn could be at the root of, to have help for these families/corn allergic.  To do this you can write to her with your story of corn allergies- when it started, what it's like, what it means to the allergic individual and what it means to the family, what it would mean to have corn listed as an allergen, what doctor diagnosed and follows, and anything else to share.    You can submit your/your child's story to her on her support page here 

I submitted our story: 
A corn allergy has afflicted my son.   My son is 2 1/2yrs.old and has Food Protein Induced Enterocolitis Syndrome (FPIES) and his allergies include corn, among other foods such as soy and dairy proteins.  His reactions consist of damage to his gastrointestinal system by inflammatory cells recognizing the corn as an allergen, his body reacts by violently expelling the allergen with profuse vomit until bile followed by diarrhea, this can cause severe dehydration and acidosis for him.   A reaction that isn’t this severe (from cross contamination or trace proteins) will bring on continued gut inflammation which results in ongoing pain for him.  His diet is very limited by his allergies and severely so because of his corn allergy and this country’s dependence on corn.   Because of his allergy, he has even reacted to elemental formula’s that severely allergic children typically thrive on.  These formula’s are not an option for my son because of the corn syrup base.  This affects his quality of life because as an infant, he needed reflux medications but the effects they had on his body landed him in the hospital for dehydration and failure to consume adequate nutrition.  He was taken off of breast milk and put on elemental formula’s- which he consumed as his only source of nutrition for the next 5months until we saw an allergist familiar enough with corn allergies to save his life and advise us that yes, with him reactions to medications (all OTC medications have some degree of corn ingredients) as well as his inability to tolerate an elemental formula – a corn allergy was typically at this root.  Over the next months, we removed all corn and our sick little boy began to heal.  We finally were in control of his allergies, by the recognition and acceptance of his corn allergy and a lot of mommy research- thanks to other families sharing their tools for how to thrive with a corn allergy, we were able to control his allergy.  Finding a nutritionally adequate diet without a formula was another challenge we are continually battling. Recognition of a corn allergy would save my son from having to undergo numerous and invasive tests and procedures, recognition of a corn allergy would raise awareness and appeal to formula companies that there are increasing numbers of infants who have to choose between controlling an allergy and avoiding daily pain and reactions/malabsorption or nourishing their child- what kind of a choice is that for a mother?   Allergists have a difficult time recognizing that formula can cause a problem for a corn allergic if they have not cared for a child with a corn allergy and this is further disillusioned because of the dependency of formula companies on corn syrup assuring them that “typically kids with corn allergies don’t react to our formulas”….when the lives of these infants tell a different tale.   Parents are left to manage this on their own, risking malnutrition in an infant because doctors can not help, and even turn their backs on these children….because of the poor recognition and awareness of corn allergy and how many things have corn and corn derived ingredients in them.    

Corn is a complicated and difficult allergy trigger to have. 


  1. Our country's reliance on corn products is pretty overwhelming. Its IS in nearly everything.
    I *think* Liv falls into the 'corn lite' category. I didn't get to do a full elimination while nursing and reintroduction to 'test' it, but I am 90% sure that at least the whole food of corn is NOT good. Formula seems fine, but the corn syrup in medications and the high fructose corn syrup in soda seemed to bother her when I was nursing. Odd. Good Post. Informative and enlightening as always ;)

  2. I'm sorry for the struggles! My adult husband has severe corn allergies and it's difficult for a grown man and his mostly stay at home wife to manage some times... I'm sure it's even more difficult for a busy mom of four... Some products we have become dependent on: homemade granola, Quinoa (high in protein and versatile), raw milk (you could try goat - raw milk has the most similar properties to breast milk and has better nutrients than processed), Eden brand organic beans, homemade almond butter (it can be made with any nut or seed including sunflower). We also make our own laundry detergent and dish-washing detergent....
    I'm not sure if you can use any of them but keep my tall, skinny husband full and preventing weight loss was a real struggle until we found the above products.

  3. Thank you for sharing this information. My almost 6 month old breastfed daughter has several food intolerances. I am glad that I discovered corn pretty early on. First it was dairy, then corn, then tree nuts, and I suspect she can't tolerate wheat either. I will be trialing that this week. I thought cutting out all dairy was hard until I had to cut out all corn. My eyes have been opened so wide to how corn is in nearly everything. I ate pretty healthy before, but now I eat really healthy! I struggle to eat enough though and worry about losing my milk supply. I am thankful that despite out challenges with food protein intolerance, my daughter is thriving.