The Great Beef Re-Trial of 2018

We are approaching the 3 year mark with our FPIES baby, Matthew. It's been over 24 months since his last reaction - and so the time for re-trialing is now upon us.

The latest guidelines (released at the FPIES 2018 Conference in Philadelphia) advise waiting 12-24 months after the last ingestion to re-trial, depending on the child and the severity of the reaction.). Previous to that, the most comprehensive paper published was the "International consensus guidelines for the diagnosis and management of food protein–induced enterocolitis syndrome: Executive summary—Workgroup Report of the Adverse Reactions to Foods Committee, American Academy of Allergy, Asthma & Immunology"

A few weeks ago, after an accidental ingestion of beef at daycare (1 mini meatball) with no reaction, we decided to re-trial beef. I asked the daycare for extra meatballs to continue giving them to him, which they did.

I was nervous the entire day after I got the call from the daycare, but so relieved when nothing happened, even after having 2 meatballs for dinner! Of course, I watched him like a hawk every second he was awake, and monitored him closely at night. I had a sliver of hope he would pass, but for some reason, felt very positive about the situation (how very unlike me!)

(I love our daycare, but was somewhat concerned when they asked me on the phone if they should treat Matthew - somehow forgetting it is a non-IgE mediated allergy. I reminded them that epinephrine auto-injectors like EpiPens don't work for FPIES - plus, he didn't have one! Of course, for a week afterwards they kept thinking he was allergic to wheat for some reason, which always scares me because if they try to give him gluten-free products to avoid wheat, they'll most likely contain rice, his actual worst trigger.)

Then, we spent over 2 weeks giving him beef every single day. Why 2 weeks, and not 1 week? In his initial beef trial, he reacted on the 13th ingestion. That's right, the 13th!!!! It was a bit of a fluke that we caught it, because we had already moved onto the next trial, and most certainly would have blamed that food for the fail, except that he hadn't yet ingested it that day, and I gave him beef first thing in the morning. So this time, I wanted to do at least 14 days for the re-trial, even knowing it might be overkill. I had a sliver of hope that he would pass, and each day, that sliver grew until it was the size of a plank, and then a tree!

And the result - he passed!

Matthew loves meatballs and hamburgers (and watching daddy use the barbecue!), he's not sure about lasagna, but is fine with bolognese sauce - if he's distracted. I think it's the texture of minced beef that he finds strange. He loves beef hot dogs and pepperoni, as well as stir-fried beef, if it's soft.

Mostly, I was excited about this beef pass because beef is daddy's favourite and it will be so nice to be able to prepare one meal for everyone again!