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, April 12, 2011
Fundraiser for Research
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 EosinophilicEsophagitis, but found 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 (Elecare followed by Neocate). For Samuel, this is when things went from bad to worse.
Samuel stayed exclusively on the elemental diet for 2 mos. 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 days of vomiting. Even after recovering from the rice reaction, Samuel continued to be sick on a Neocate only diet. He would vomit so violently when we tried to give him Neocate Nutra- the 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...and 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. 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 treat 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 no 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. 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. 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. 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.
We were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone for fear we would lose him in his sleep. 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 now thrives on Hemp milk formula but continues to not tolerate food introductions. His FPIES is chronic, and has become complex- it is "atypical"; his body cannot properly shut down its attacking mechanisms once it begins to perceive a food as a toxin. I continue to research daily into his mechanisms and complexities. More medical research is needed into this rare disease so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor's offices, and treatment protocols are uniformly established and begun immediately. So that support is found in specialist offices. So that everybody suffers a little less and eats a little more.