I have been contemplating in my head how to start this story. How far back to do I go?
I would say we knew something “just wasn’t right” from the beginning. The first night at home his breathing was so raspy and sounded horrible. We were back at the hospital within hours of leaving but they said nothing was wrong. He was always uncomfortable, always grumpy, always spitting up all over everything.
I guess it wasn’t until this happened that we suspect something more was going on. Something more than colic or reflux.
Since this day he has had 6 similar episodes.
We visited with the same GI doctor that Aaron saw as a kid. She ruled out anything major and assumed it was probably an allergy.
We made an appointment with an allergist even though I had it pretty much figured out by this point and I wasn’t too worried.
Miles has a condition called Food Protien Intollerance Entercolitis Syndrome. (FPIES – pronounced F-Pies) FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. Basically his body just rejects certain foods. It isn’t an allergy. It doesn’t have hives, or wheezing and his throat wont swell up. His body just does everything possible to get rid of the food as soon as possible. And often as messy as possible!
There isn’t a whole lot known about FPIES. The reaction mimics some sort of stomach bug. It happens within hours of eating a trigger food and the vomiting lasts for hours and hours and hours. They often get very lethargic and gray, cold and clammy and have no energy. Thankfully once Miles snaps out of it, he is as good as new and acts like nothing happened. The last episode he had he fell asleep for just a minute and when he woke up he was the happiest baby we’d ever seen. Granted we were EXHAUSTED since it was about 3am. But he was happy and that is all that mattered to us.
Some of the trigger foods for the condition are:
*Grains (Oats, Rice, Barley)
*Legumes (green beans, peas, lentils)
*Dairy and Soy
His triggers so far have been:
Good news is that he will grow out of this by 5 years old.. and no one has ever died from it! Most patients head straight to the hospital the second vomiting starts because babies get dehydrated so quickly. We live really close to the hospital so we got the OK to stay home and monitor him and call 911 if things get bad,
The game plan right now is no new solid foods until at least 1 year. (I begged to let him still eat sweet potatoes and apple sauce, he loves his food so much I don’t want to take it away. Those are the only 2 things he’s been okay with so we are sticking with them)
No milk products until at least 24 months!
Right now he is still exclusively breast fed. I know I wont be able to keep up with him all the way to 24 months. So we will have to start supplementing with formula sometime. Get this.. the formula that he needs to be on. If he was 100% formula it would cost us $10 A DAY! And that makes my endless hours of pumping seem like a walk in the park.
ON TOP OF ALL THAT.. the doctor also wanted to check for “normal” allergies. The kind that make you break out in hives and swell up. I was pretty confident that we’d have no issues there. There aren’t any food allergies in our families so I didn’t think we had anything to worry about.
They test 17 things on his teeny tiny back. It was apparent really quickly that we had a problem or two.
Peanuts and Eggs showed an immediate reaction. There were other not as bad, but Peanuts and Eggs jumped right out at us.
As we stand he has FPIES and can not eat a list of foods that goes along with that. (but I can.. we think…again not a lot is known about it..) FPIES will all be trial and error. Which I hate. I hate making him sick. I hate that he associates eating with getting sick now.
We carry EPI Pens for his anaphylactic allergies (peanuts and eggs.. which I DO have to avoid.. ughhh) and he has an intolerance to dairy and soy. (which I also have to avoid)
We carry papers in each of our wallets and in his diaper bag on for the doctors at the ER, if we ever ended up there, or the paramedics on an ambulance.
We have an appointment in 3 months to discuss his nutrition and how we are going to handle all of this and still keep his weight up.
We count down the days until he grows out of all of this..
Although this is never what we wanted.. it is our new normal and we will all adjust!
***EDITED TO ADD (a year an a half later) Miles has NEVER been supplemented on formula. He has stayed on breastmilk this whole time. It hasn’t been easy, and I haven’t been able to do it naturally, but it’s really important for me to add that in there. ***