Tuesday, 21 June 2016

Beef: We Just Failed It

Today, Matthew acutely failed beef.

What that means is that about 3 hours after ingesting beef, he vomited multiple times.

He didn't do well with beef even in the beginning, in that he had some chronic FPIES reactions (skin rash, abdominal pain/arching his back and crying, nasty yeast/diaper rash). Despite my suspicions that beef was not agreeing with him and my misgivings, we decided to push through. I thought maybe his gut would get used to it. The doctor told us to give meat as he needs iron. In addition, we had given Matthew beef on 12 previous occasions, the last time being 7 days ago.

It is lucky that today, I fed the beef first and, for some unknown reason, he refused to eat the foods we were actually trialing (apricot and bananas - yes my allergist convinced me to trial multiple foods together). If he had eaten everything, I might have thought apricot and/or banana was not safe anymore because I thought that beef was (almost) safe.

What have I learned or confirmed to myself?

  • FPIES reactions are not "all or nothing, like regular allergies", as our (new) pediatrician told me yesterday. It is possible to ingest the food multiple times and develop an acute reaction down the road.
  • Chronic symptoms might be a good indicator to stop trialing the food, after all. It's probably better to have a chronic fail rather than an acute one.
  • Our 4-3-4 protocol did not work in this case. Using this protocol, beef was deemed safe. We may need to lengthen to a 7 day trial (as recommended by I-FPIES), and re-introduce a small quantity alone for a few days after a longer (7 day?) break.
  • Meat seems to be a higher risk for Matthew so perhaps meat should be avoided for now. I wonder how to ensure Matthew will get enough iron if we are avoiding meats and legumes. I'd love to see a dietician but the new pediatrician felt yesterday there was no need, since at the time he had only failed rice. Perhaps she would reconsider now.
  • If Matthew had eaten all his food, there would have been three confounding variables - perhaps we need to go back to trialing one food at a time despite our allergist's objections?

These are questions I will pose our allergist.

A friend on Facebook gave me an FPIES introduction sheet given to her by her's friend's allergist nutritionist in the GI clinic - maybe we should use that to choose which food to introduce next? I'm adding it here in the hopes that it can help someone else as well. EDIT: My allergist won't condone using this list without more context, which I can understand and agree with. I'm just so desperate to find safe next foods and there is little guidance out there.



I was feeling so confident yesterday. Today, I am wondering what to do next. Do I give him a few days of gut rest with breast milk only? Do I continue with solids tomorrow but alter the foods I planned to give him?

As for right now, I've cleaned up the vomit and Matthew was able to keep breast milk down and is asleep. His reaction this time seems to have been milder, possibly because, due to his refusal of the other foods, he only had 1-2 tbsp of beef in his stomach. I'll keep that in mind for future re-introductions.





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