Hi all,

Very grateful to have found this community. My 5-month old son has had two very scary vomit -> shock episodes that landed us in the ER: first in response to oatmeal and then to rice. He is otherwise exclusively breastfed and has had no issues feeding from me.

Pediatrician knows very little about FPIES, and I can't get an appointment with a specialist until December.

My questions are this:

1. Given these two significant (but limited) data points, do you feel it would be advisable to *try* a milk-based formula before assuming FPIES? Given the possibility that he might not have FPIES, and/or might not have a sensitivity to milk even if he does have FPIES (since every kid is different)? I am no longer producing enough breast milk for him (he eats 45 oz a day!!!)

2. If formula, what formulas have you been successful with? The two that came recommended by my pediatrician were Alimentum and Nutramigen. Guidance towards or away from either of those (or a different one!) would be so appreciated .

3. We have started to introduce fruits and veggies - so far sweet potatoes and avocados appear to be okay. Guidance on next "safe" foods would be very helpful - I am also pursuing other threads on here to get ideas.

4. Finally, any advice on navigating the complicated tapestry of allergy specialists...living in Boston and surprised by the lack of resources available without having to wait 5 months!

Original Post

Hi,

I've been down that road . . . So sorry to hear the probable FPIES to grains and maybe more.  I can only talk from my own experiences, so feel free to take it in context.  It seems that EVERY FPIES case is unique- no "safe food" list is the same.

My now 4-year-old son couldn't tolerate any formula for quite awhile.  When you trial, if possible, I wouldn't let go of the breastfeeding just to make sure.  Look out for yellow, watery stool (popcorn like) as a possible first sign of failure.  Sometimes formula doesn't have the severe reactions that food can have (though it can)- it can be more chronic and sneakily make your kiddo really sick.  If the cheaper options fail (Alimentum/Nut.), I suggest an elemental formula like Elecare or Neocate.  After 3 years of breastfeeding, I switched my son to Neocate.  

My son did well with avocados as well.  Common food triggers (but there is really no way of knowing until you trial- but delaying is smart) to avoid for now include rice, oats, banana, peas, green beans, squash, sweet potatoes (but seems like that is OK?), and chicken/turkey.  A lot of FPIES kiddos also have trouble with cow's milk and soy.

Trialing baby food pear and mashed potatoes (russet) might be a thought- but as always be very careful . . . And trust your instincts . . .

My son also reacted to all grains (very severe to rice and corn, oats later failed), but later down the road we had success with Quinoa.  Quinoa Queen (google it) makes quinoa cheerios that I smashed into baby cereal.  But, I would delay trialing quinoa until he's older . . .  

Definitely don't feed your kiddo puffs (made out of rice).  I made that mistake. Yikes!  I have no idea what I was thinking back then . . .

Good luck and hopefully I was some help.  FPIES can be such a confusing condition.

-Jessica 

Hello, 

Sorry you have to be here but glad you have found us.  I see you are from the Boston area and I wanted to let you know about an event coming up in Boston. It is called Boston Zoo Day, it is held every other year and put on by the Children's hospital.  Many allergy organizations are available at the event, to help learn about local resources - including The FPIES Foundation!   The event date is Sept. 7th (rain date of Sept.8th).  I hope you can make it! 

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