From The Kitchen of A Military WIfe

Our FPIES Story

Posted on: March 1, 2012

This blog used to be about cooking.  It contained details of all the delicious meals that I would make for myself and for my husband and it was very popular.  After my son was born I stopped blogging and disappeared from the blogging community.  Up until this point I had been using Facebook to get out my thoughts and feelings about my son’s condition but it would be easier to use my blog so here it goes.

Our Story:

Luke was born in July of 2011 and he was an angel.  He was so beautiful and we loved him more than life itself.  When Luke was a few weeks old he would not stop projectile vomitting.  This was not “spit up”  it was exorcist style vomit.  They told us that he had acid reflux and we were given zantac and sent home.  When he was two months old the vomitting had become so severe they suspected he had pyloric stenosis so we were sent for an emergency ultrasound and told that if he did have pyloric stenosis he would require emergency surgery to correct it.  Well he did not have pyloric stenosis so we were once again left without answers.  At this point they thought my son had colic and acid reflux.  About a month later we got a referral to see a gastroenterologist.  His office said it would be 3 months before we could see him.  I called every day for a week and finally they agreed to see him.  He suspected a milk and soy protein allergy but wanted to do an endoscopy to make sure that Luke’s sphincter was closing properly.  Everything went fine with the endoscopy so I was put on a restricted diet because I was breastfeeding.  Luke is now 7.5 months old.  In the past 5 weeks he has gone down from the 45th percentile to the 25th.  His vomitting has become so severe that he has been hospitilized twice in the past months and has had additional ER visits.  We see some form of doctor for him at least once a week.  We recently got the diagnosis of FPIES http://www.iaffpe.org/what_is_fpies.html and it has been a long road.  Luke can not eat any sold foods anymore and he reacts to foods that he is intolerent to through my breastmilk so I am on an extremely restricted diet.  Luke is FPIES to dairy, soy, pears, corn , carrots, taro, beef, turkey, rice and bananas.  We are currently awaiting a referral to The Children’s Hospital of Philedelphia in hopes of seeing a doctor who specializes in FPIES.  We are located in Hawaii and most doctors have never heard of FPIES let alone treated a child with this condition.

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2 Responses to "Our FPIES Story"

Just hoping and praying for good news on Luke. We pray for him every night here on the Central Coast of Ca. God bless.

Wishing you lots of luck at CHOP. You will be in excellent hands. I hope the info on IAFFPE has been helpful to you and your family. Hang in there, a plan is on its way 🙂

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Welcome To My Cooking Blog!

Welcome Everyone! I'm Alicia and I am a military wife currently living in Hawaii. I LOVE cooking and everything it involves :D This blog is here to show you that you can make AMAZING food in your own house :) For much less money than what you would pay if you went out at a restaurant. I hope you enjoy the recipes!

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