I got an email from one of my close friends alerting me to something she'd stumbled upon, Dr. Leickly's Allergy Blog (you might remember the allergist from Riley who had never heard of FPIES and sported a rough bedside manner). Well, turns out Claire's visit with him made a lasting impression. Since meeting us, he's looked further into FPIES and has joined the conversation. Dr. Leickly attended a conference in New Orleans and heard Dr. Sicherer (the doctor/researcher that I reached out to at Mt. Sinai the day after we were diagnosed) speak on the topic. He then spoke to an audience of general pediatricians at a conference here in Indianapolis, pertaining to Perplexing Childhood Allergies, and passed along the information on FPIES.
Praise God.
I hope that word of FPIES spreads like wildfire. I continue to hope for effective methods of testing for trigger foods, so that FPIES families no longer need to "experiment" with children as we navigate the minefields of food trials. Lastly, I pray that FPIES will become common knowledge in medical circles, so that families will no longer be met with blank stares or brick walls from those we rely on for medical care and treatment. The children deserve better than that.
Dr. Leickly has redeemed himself :) Here's a link to his post http://www.pediatricallergyindy.com/2010/02/17/fpies-food-protein-induced-enterocolitis-syndrome/
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Call me hormonal, but the end of the article made me cry!! WAY TO GO KRISTIN!!! There are going to be some VERY lucky babies and families in Indy whose lives are going to be better off (/saved!) because of the road you've paved!!! Congratulations!!!!!
ReplyDeleteKristine,
ReplyDeleteMy son was also diagnosed with FPIES around 6.5 months. I had removed dairy from my diet around one month of age after noticing blood in his stools. After reading through your experience, I'm wondering if you could differentiate for me the difference between a dairy intolerance and FPIES related milk reaction? How did your doctors know the difference for your daughter? Thanks so much!
Rachel
Hi Rachel!
ReplyDeleteThank you so much for checking out this blog! To answer your question, Claire's dairy intolerance was diagnosed before her FPIES when we found blood in her stools after drinking a (rare) bottle of formula. Apparently that symptom is very common when babies bodies are too immature to process the protein in cow's milk. From what I understand, an FPIES reaction to milk would be the same as an FPIES reaction to other foods... Profuse vomiting 2-3 (or more) hours after consuption, terrible diarrhea as well... The symptoms of an intolerance are far less dramatic--or dangerous--than FPIES. The good news is a dairy intolerance tends to resolve itself much sooner than FPIES. I hope my answers are a little helpful. I will keep you and your son in my thoughts!