Our Little Man and FPIES

By Joy, United States, January 26, 2014

Samuel was diagnosed with FPIES at 11monthes; although he had chronic illness for months prior to the diagnosis. Samuel is our 4th child, 2 of our other boys had milk protein intolerances so when Samuel started to show sensitivity to my breast milk, (gassy, “colicky”, spit-up, loose stools, disturbed sleep) we assumed he had the same troubles with milk. A trial of milk-based formula confirmed this, with projectile vomiting and diarrhea and an increase of his intolerance’s. Reflux crept in, so we tried to add rice cereal to his diet, thinking this would control the reflux activity of a breast-fed only baby. He tolerated this for awhile and then started to refuse it, had increased spit up, fussiness, disturbed sleep, increased reflux. This was the course of things for the next few months- every effort we tried to control his symptoms, resulted in him getting progressively worse. We consulted our pediatrician at 6mo.; with a referral to gastroenterology shortly after as he began to fall significantly on the growth chart despite a no-milk/no-soy/no-wheat elimination diet. He underwent his first scopes, which ruled out Celiac disease and Eosinophilic Esophagitis, but did find non-specific inflammation and lymph nodular hyperplasia. We took him off of breast milk and all foods and put him on a strict elemental formula-only diet. For Samuel, this is when things went from bad to worse. Samuel stayed exclusively on the elemental diet for 2 mos., often still getting sick. We were advised that his intestinal inflammation would be healed and could re-start him on foods. We started with rice….because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on the acute reaction. Even after recovering from the rice reaction, Samuel continued to be sick on a elemental only diet. We were advised to try Nutra, but he would vomit so violently – this retching- stomach-emptying-vomiting that came with this elemental based-medical “food” was un-nerving. We knew something was horribly wrong…but specialists couldn’t help because no one had heard of this thing called FPIES. I researched day and night, read every journal article I could find, brought everything to our pediatrician who agreed it did look like our son had FPIES. We then decided we needed to see a specialist familiar with this rare illness, if we had any hope of a direction. We went to CHOP, we traveled from Minnesota to Pennsylvania in an RV loaned from friends (bless their hearts) with our 4 children and got confirmation of the diagnosis of FPIES from an allergist there. We returned, hopeful we could finally have a path to wellness for our little man; only to quickly find that even with a diagnosis- too little is known on how to manage this rare disease. With Samuel getting increasingly sick from his formula, and a growing suspicion of corn allergy; we trialed corn. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. We had so little help, his doctors did not understood what was happening to him, or believe that it was indeed from the very things that were supposed to be nourishing him. Over these months on elemental formula, he suffered from vomiting, diarrhea, lethargy, dehydration, high fevers, a febrile seizure…and still, the mechanisms of his disease were not understood by his doctors. Instead of getting better on elemental formula, he was getting worse, more and more sensitive and chronic vomiting/diarrhea. Our Allergist at CHOP had advised he would continue to decline if we did not remove his triggers- in every form including the corn syrup of his formula, and medications (he was showing to be that sensitive!). The mucous/bloody diapers, the continued vomiting, the refusal to eat, the spiraling from the inflammation in his intestines….would not stop until we removed his triggers from his diet. The acute reactions were scary, we were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone, he was so lethargic following a reaction. We needed to put him on another source of nourishment for his body to heal; unfortunately all formulas have either dairy or corn in them, this is when we started him on Hemp milk – he drank 50oz.the first day! His body perked up and he came out of the very scary stages he had been in for all those days….we knew then that we would need to move away from the elemental formula and build him one out of Hemp milk. He thrived on Hemp milk formula but continued to not tolerate food introductions and his diet remained incomplete, he has had to be TPN (IV nutrition) and currently has a G-tube for blenderized feeding of his limited diet. His FPIES is chronic, and seemingly complex- his doctors call it “FPIES plus” because we’re sure there must be something else affecting his body that makes it so difficult for him but have not found what that is. We continue to research constantly into his mechanisms and complexities to keep him thriving! Follow the Little Man’s story: FPIES & Mudpies

Read more at: http://fpiesfoundation.org/inspiration-stories-our-little-man/ | The FPIES Foundation

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