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."

Thursday, February 3, 2011

Chronic FPIES

Chronic FPIES can happen from repeated exposure to trace trigger proteins.   I have written before about how Little man had chronic FPIES.   His symptoms were causing him to be a sick little boy but we could not pinpoint what the culprit was.   It was clear he was reacting to something, and yet we could not find it.  

As we explored FPIES as a possible reason for his illness and intolerance's, as a diagnosis to give us direction; I found many articles that described his symptoms but the acute reactions were more severe than what he was experiencing while breastfeeding.  I did not understand this.   I met other moms that had similar experiences....chronic reactions more than acute.    I have also met many mothers who know their babies reacted through breastmilk with trigger symptoms (not many have reacted to shock but it has happened); although the studies are not clear on how/when this happens- they do say that babies can show sensitization through breastmilk and upon introduction of the foods being ingested by the baby, brings on the acute reactions from the chronic exposure to the trace proteins in breast milk.   I know now that Little Man was chronically reacting to corn, rice (dairy and soy before I eliminated them) in my diet after we began those foods for him.    But, his body is very efficient and was coping, while displaying a myriad of chronic symptoms.  Not until we pulled all food, stopped breast feeding, changed to elemental diet for control of allergens - in hopes of healing his gut- and finally began to re-introduce foods, did we see the acute reactions.  First to rice, then sweet potatoes and then corn.    It has been difficult to get him healthy past corn fail, he had already been reacting to corn on a chronic level for so many months.  Introducing corn in it's whole protein form, brought on the severe reaction (we were already seeing acute reactions from the formula itself- Elecare, Neocate, and Neocate Nutra).   His once very resilent body, struggled to pull out of the acute on chronic reactions of corn.  

It is clear there are many cases of chronic FPIES, so little is known about this diagnosis.  Many doctors who are aware of it are only aware of the acute reactions, they are not familiar with the chronic reactions from trace or contamination of trigger proteins.    Chronic FPIES can be very frustrating, and can bring along many compounding medical issues -- while the "silent" damage continues....until the acute phase of the reaction brings the trigger food into the light.  

Last month, a fellow FPIES Mom (thanks Nichole G.!) found this article online: FPIES by Cows milk proteins passed through breast milk.   It is the first article with the chronic and acute on chronic FPIES "language".   I was so pleased with not only the recognition of FPIES through breast milk but also the confirmation that chronic FPIES has been noted by the medical community (even if it is in Italy!).  I sent an e-mail to the author MD, and he even responded with the PDF of his article!  He noted in his e-mail that he would like to see more research on this growing allergy.   I am glad to hear that, I do to.  

1 comment:

  1. Hello ! I am Giovanna and I fight my battle for 14 months alongside my son David against chronic FPIES . We are in Italy and I guarantee that here we understand little . Till today even though the FPIES was diagnosed david however , we are still taken for fools . Breastfeed David , he rejects the Nutramigen vomits and spits , but fortunately mother nature has allowed me to breastfeed him again ! David has exactly the reactions you describe ... symptoms veiled ... as in a fog of confusion. Diarrhea every other day , sometimes more, sometimes less, I never normoconformate , sleep disturbances and mood, rarely vomiting, eczema sometimes blurred, sometimes spot blood and mucus. I eliminated all cow's milk , which months ago identified as the one responsible for his FPIES , told me it was the only food that passed from breast milk . A few months of relative peace. From 40 days again problems. But now ? I'm sure , a feeling , that there is rice in the middle. Perhaps the eggs. Something that insults his chronically fragile intestine. Tests normal, no virus , no bacteria. Only VES and PCR and white blood cells perennially high , mild hypochromic anemia . Signs of chronic intestinal inflammation . The FPIES chronic exists, and devastates the brains of poor mothers . If any mom in the world with chronic FPIES reads this please contact me my answer , we must tell the world that our children ARE doctor . Thanks