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, February 20, 2012

Challenge for Chronic FPIES

From The Current Understanding of Immune Mechanisms ofFPIES “FPIES manifestations differ in the chronic and acute forms…”Removal of the offending allergen should lead to rapid and complete resolution of symptoms within a few days. This chronic initial phase can be followed by an acute phase if the antigen is removed from the diet for at least 2–3 days and subsequently reintroduced, with pathognomic symptoms starting approximately 1.5–2 h after ingestion. Severe, repetitive vomiting generally occurs 1–3 h and diarrhea occurs 5–8 h after feeding [13]. Associated features may include pallor, lethargy and cyanosis”.

While we celebrate that our little man has not had an acute reaction the Alimentum RTF (from the casein protein), we are still concerned for a chronic reaction, based on Samuel’s history of chronic FPIES (dairy through breastmilk, soy, rice and corn triggers were all chronic FPIES before we pulled them from his diet and reintroduced and confirmed the acute FPIES.  

Little Man had an acute reaction of projectile vomit, and diarrhea to Nutramagin at 6mo and again at 7mo.  Nutramagin is also hydrolyzed dairy proteins- like Alimentum is (just different company).  So, we did not try Alimentum at that time. Two years later, a reintroduction of this same hydrolyzed protein did not result in an acute reaction is a VICTORY for our little man!   A sign of his FPIES triggers healing, one by one.  A sign that by avoiding milk in any and all derivatives from the beginning helped his body lose the Tcell memory that it once considered it an antigen (something to attack).  We are very encouraged by that.   But since he has more of a history chronic FPIES and since his body has not tolerated tapioca starch or soy oil before (other ingredients in Ali RTF), we want to be sure we have taken all the measures to be sure his body is accepting this nutrition.   

After a weekend rest, we are re-admitted on Monday morning for the challenge dose of Alimentum (5oz. via the NGT); and we will wait 12hrs. to observe for a reaction.  In that 12hrs, he will get his hemp milk formula.   We are admitted around 9:30am, baseline labs and assessments are done and Sam gets his dose of Ali RTF at 12noon.   He isn’t settled enough for a nap but at 2pm has a diaper that has blood in it again.   This is not encouraging and this one is more than the first one….but he didn’t have them all weekend and now with the challenge dose he has it again.   The stool is not diarrhea, but the blood has us concerned.   He has a fairly uneventful rest of the day and 6hrs. comes and goes, then 9hrs and then 12 and NO reaction.    NO vomit, no diarrhea, no symptoms (other than the blood in his stool).   I breath a sigh of relief and collapse into sleep- I’m exhausted….trial days are exhausting as you wait and see if the body is going to react or accept the food. 

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