...for the next three years!
As Kathy started Joey out on solid baby foods a few months back, he had really violent reactions to even the smallest trace amount two hours after he ate them. He was throwing up bright yellow bile, turned grey and fell into an almost shock-like lethargy. From Kloska experience with little ones, her gut was that this was not a normal allergic reaction, but after visiting the Urgent Care that insisted it was the flu or allergic reaction (although they did not witness his reaction completely by the time they got in) she decided to wait a few weeks and give it a-go-again. He had the same violent reaction four subsequent times -to rice cereal, oatmeal and even what she thought was a harmless fruit (but actually contained rice and soy). I witnessed the last sickness, and he had only licked a TINY portion off my finger before rejecting it completely. Kathy had described his 'throwing up', but what I witnessed was far from 'normal' -even for a small child with the flu. To the defense of the different doctors she saw, Joey's reaction would be hard to imagine without seeing it. Anyway, Kathy decided to do research of food allergies on some Mommy-blogs and came across a perfect description of what she had experienced with Joey -only it was not an allergy, instead it was a newly discovered sickness (I'm not sure that is the right word? condition?) that is life-threatening
. And Joey was a text-book case. She printed off the material and made an appointment with her great pediatrician -who thankfully took her seriously and called allergists and gastroenterologists at Riley who quickly confirmed the diagnosis -Joey has FPIES (Food Protein Induced Enterocolitis Syndrome ). Way to go Kathy for diagnosing such a strange and unknown Syndrome! (Isn't it amazing what Mama-love and the internet can do?)
The good news is that kids outgrow this by 3-4 years-old. The bad news is that the only way to find out the child's trigger-foods is trial and error -and since the reactions are violent and life-threatening, doctors do NOT advise oral eating 'tests'. Instead you simply remove all known trigger foods for the first few years. Not a simple job, as they include: rice, oats, barley, sometimes wheat, milk, soy, eggs, sweet potatoes, legumes, bananas, chicken and turkey to name a few. And I don't think this list is complete (they are simply the ones I remembered). Talk about a limited diet, and a scary challenge for Kathy who can't risk making a mistake at misreading a label (as we together did with the baby food 'fruit' a few weeks ago). If Joey ingests even the smallest amount of these foods she must rush him to the ER immediately to be hooked up and monitored. At the end of this 3 year trial, before she risks re-introducing the foods, she must go to a medical facility, have him hooked up to an IV and monitored for 3-5 hours after trying the 'food.'
Unfortunately this condition is extremely rare and there is very little information about it in general. The internet has nothing except the info. you can read by clicking on the title here, and even Kathy's awesome pediatrician had to call Riley to learn what he passed on to her. There are a lot of questions of how to do this and very little answers. Usually by removing the above-stated foods children are kept safe, but cases have been reported with strange 'triggers' such as peaches and carrots (most fruits/vegetables seem to be normal.) Its bad enough when your child is sick, but I know it will be doubly difficult for Kathy since not even doctors can find a whole lot of rhyme and reason to this one. Thank God Joey is nursed and is thriving (to say the least :) ) -since most of these kids are malnourished or struggling at least in that area.
Anyway, if we all could say a prayer for them now at the outset of this, maybe Joey can avoid any more 'episodes' in the years to come. And maybe too God will give him the grace to eat something -since after these 4 times he completely refuses to try anything now (can you blame him?). He is so big now (22 pounds of love at 8 months) that he really needs something more than nursing. (Amazingly -in God's great plan -this condition does not occur with any of the foods when passed through breast milk).
Thanks for your prayers, and please, if you see Joey -PLEASE DO NOT FEED (without his Mom's permission)! We've gotta make him a permanent set of t-shirts saying this! He's got such a great attitude towards this all -look at that smile!
For more information on FPIES (if someone is interested), click on the title. +