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."
Thursday, October 7, 2010
Two Hours every Two Days.....
My Little Man has a corn FPIES trigger. In hindsight, it may be one of his main/first triggers as he reacted diaper rash ointments and diapers only a few days old. There is corn starch/talc in diaper creams and in some diaper linings. He then reacted to Tylenol at 2 1/2mo. old when I have given it to him for pain he was having (that I now know was from that formula trial we did at that time). There is high fructose corn syrup and citric acid (among other things) in infant Tylenol. He seemed to tolerate children's Motrin better later on when given for pain and teething, there is no corn syrup in Children's Motrin (although there is citric acid so he wasn't completly tolerating that either, which we suspected but weren't sure). He reacted to all formula trials - we have no doubts that he has a dairy trigger but likely his corn trigger was compounding this. I nursed him while giving up dairy and soy, then wheat in my diet - all to no avail....now we know the corn I had increased in my diet was likely why. FPIES triggers (violent vomiting, diarrhea, dehydration) do not happen through breastmilk but sensitivity's do for many FPIES kids (just the same as a milk intolerant or another allergy will be sensitized through breastmilk). The infant reacts to trace proteins in the mothers milk and anything from "simple" reflux to bloody stools can result from this reaction to a sensitive/immature gut. My Little Man was reacting to these proteins in my breastmilk, after beginning solids, the sensitivity only was heightened and his body was beginning the attacking mechanisms of FPIES to: dairy, soy, rice, corn and triggers yet to be identified (but hopefully no more!). My Little Man continued to react to the trace corn proteins in the corn syrup solids in the formula's- even the elemental formula's that undergo more strict "straining" of these proteins. For so many months, my little man suffered because of the "assault" from the trace corn proteins- some days were worse than others, some days were unbearable, but everyday he had pain.
We have fully moved away from any commercial formula. I would LOVE it if a formula company would hear my plea (maybe I need to write more letters?) and produce a formula that my Little Man could thrive on but so far those have been empty plea's so I began the process of making him a formula. I make it out of Hemp milk, hemp high protein, oil and arrowroot starch. The catch is I have to cook this arrowroot starch down to a syrup because Little Man can not tolerate it any other way - he continues to have problems with carbohydrate digestion but by slow cooking it over a low heat (in the hemp milk)- it breaks down the carbohydrate to an easier digestible form. It takes 1hr. for 1batch, and I can do 2 batches to last 2days- but anything longer and the formula starts to separate and breakdown. So, every 2 days- I am in my kitchen for 2hours.