Hi there - my mind was recently blown speaking to a coworker about how my daughter used to have frequent vomiting "episodes" complete with lethargy and apparent nausea, and she told me about FPIES. It seems to describe exactly how she was a while ago, but I'm still perplexed whether she has it or not.
Since she was born, my daughter always spat up a lot daily and about every other week would have a projectile vomiting episode. I attributed this to reflux and considered it a laundry problem since she was generally happy and gaining weight. My son was the same way. She's always been exclusively breastfed (no formula yet).
At about 3-4 months old, I tried a dairy protein elimination diet for 6 weeks to see if removing the proteins from my breastmilk would change anything. It didn't.
At 5 months old she began to have episodes that sound exactly like severe FPIES episodes. She'd be lethargic and pale and vomit, sometimes a couple hours after eating. Then she would either pass out and sleep or sometimes she'd just seem much more comfortable and normal. These would happen 4-5 times within a span of 4 days.
At 6 months old it was discovered she was losing weight so we went to a Pediatric GI to evaluate. We did a radiology scoping test where a radiologist viewed how her GI tract digested milk to rule out anatomy abnormalities - all he found was a bit of reflux. Everything appeared normal.
We started her on Zantac (ranitidine) at 6 months old and for about 3-4 weeks the vomiting episodes persisted but then at 7 months old, it stopped. She also stopped spitting up so much. This could have been a combination of many things - she also started solids at 7 months old and was sitting up often - but it seemed the Zantac helped.
Her last severe vomiting episode was at 7 months old, this was combined with lethargy and pale complexion. For the past three months, nothing has happened except one minor vomit but without lethargy or pale complexion. She's now 10 months old.
She has at least tried a lot of the types of food listed as triggers - oats, egg yolks and whites, cheese, sweet potatoes. She hasn't had any nuts or tree nuts yet though, and no fish, because my son has an allergy and we do not eat fish. She still nurses and I have no exclusions in my diet besides fish. I'm sure she's been exposed to soy because I am not the cleanest eater and have probably given her bread with soy fillers.
Now I'm wondering if we should go back to the GI doctor approaching it as a possible FPIES issue. It seems to have disappeared and maybe it was just really bad reflux that she grew out of but what if it is FPIES and she just hasn't been exposed to any triggers in the last 3 months? Have we just gotten lucky that she hasn't ingested anything that would trigger a reaction?
Thank you so much for your support.