Zac (Mr. Happy)

CURRENT TRIAL: nothing

We recently decided to throw caution to the wind and allow Zac to eat nearly anything he would like, as long as it is corn-free, cow milk-free, wheat-free, fructose light, salicylate light, grass-fed and organic. Doing that proved rice to be a safe food, and so far he has been fine with a wide variety of other foods. We may be at the point where the only things we have to avoid are known FPIES triggers, and can begin feeding him much as his brother. With shorter trial times, we can suss out what he can tolerate and what he cannot, but this is SO much easier than living full-time with FPIES!

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SAFE FOODS – FPIES (direct ingestion)

  1. Quinoa (Nov. 19, 2013)
  2. Pork (Feb. 26, 2014)
  3. Eggs (April 4, 2014)
  4. Goat Milk (May 2, 2014)
  5. Bananas (May 20, 2014)
  6. Cauliflower (June 12, 2014)
  7. Apricot (July 9, 2014)
  8. Cucumber (July 19, 2014)
  9. Chicken (August 3, 2014)
  10. Sweet Potato (August 24, 2014)
  11. Sea Salt (September 5, 2014)
  12. Salmon (December 9, 2014)
  13. Beef (January 21, 2015)
  14. Zucchini (March 25, 2015)
  15. Baking Soda (May 31, 2015)
  16. Blueberries (June 24, 2015)
  17. Olive Oil (July 13, 2015)
  18. Russet Potatos (August 13, 2015)
  19. Ground Black Pepper (November 18, 2015)
  20. Rice (Summer 2016)

Items in light grey need to be re-trialed after our horrible stomach bug.

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UNSAFE FOODS (via breastmilk)

  1. Cow Dairy?
  2. Corn

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UNSAFE FOODS (direct ingestion)

  1. Neocate
  2. Ele-Care
  3. Ibuprofen (chronic symptoms: eczema, stinky, runny poop)
  4. Acetaminophen (chronic symptoms: eczema, stinky, runny poop)
  5. Paper, aka soy and/or corn (acute, classic FPIES reaction)
  6. Bradford Pear Tree buds (chronic symptoms: mucousy, bloody poop, eczema, spit up and cough, night wakings)
  7. Cilantro and/or Kiwi (snuck a taste of both in the grocery cart & had mild reactions)
  8. Neocate Splash (grape flavored – bloody poop)
  9. Alimentum RTF? (Unsure…might have gotten an accidental ingestion at one point in the trial)
  10. Crickets (mucousy, bloody poop)
  11. Oats (probable cause of small reaction from hand cream)(Updated: 100% acute reaction upon direct trial)
  12. Corn, even derivatives

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UNSAFE FOODS that might be unsafe due to corn cross-contamination

  1. Broccoli (bloody stool and blistering diaper rash, diarrhea)
  2. Almond Milk (store bought version) (blistering diaper rash, diarrhea)

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SUSPECT FOODS

  1. Soy (possible cause of reaction from board book ink)
  2. Corn (probable cause of reaction from board book paper & exam table paper)
  3. Honeydew Melon & Cantaloupe (probable cause of blistering diaper rash)
  4. Rice PASSED Summer 2016!!
  5. Chicken PASSED Aug. 3, 2014!!
  6. Sweet Potato PASSED Aug. 24, 2014!!
  7. Lamb (needs retrial)
  8. Swiss Chard (needs retrial)
  9. Carrots (needs retrial)
  10. Sunflower products – oil, sunbutter (needs re-trial)
  11. Bell Peppers (mucous and bloody poop, acidic poop, tummy pains, but may have been residual from his disastrous oats trial; bell peppers need a re-trial at a much later date)

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SAFE FOODS (via breastmilk)

  1. Grass-fed Beef
  2. Russett Potatos
  3. Carrots?
  4. Onion?
  5. Garlic?
  6. Olive Oil
  7. Sea Salt
  8. Black Pepper
  9. Decaf Tea
  10. Stevia

4 Responses to Zac (Mr. Happy)

  1. Serena says:

    You are amazing! (BTW, I met you and your husband on “that flight” from ANC to ORD, on my to IAD after my 1st grandson was born about a month ago.). I just took some time tonight to read some of your posts. My hat is off to you. You have done so well working with food allergies and the stress that comes from illness. One post I read said you feel quite badly. I THINK it is recent. I’ll look more later. (I have to sleep now) Of you are home with some time on your hands, and if you’ve never looked into it before, you might check it Gerson therapy. On Netflix there are a couple of things about it. It is tally about fighting cancer with nourishment, but it can’t hurt to check it out. I how you feel better!!!
    Serena

    • Carrie says:

      Hi Serena! I remember you! You were such a sweetheart on the plane. 🙂 I’m so glad you said ‘hi’. Thanks for the suggestions; I’ll look it up! Hope the new grandson is doing well. He was just precious in those photos!

  2. Alyssa says:

    Hi, my daughter has FPIES and no safe foods (13 months). We’re trying to decide if it’s worth it to make the trip to Atlanta to see the same doctors, or if they’ll just tell us keep doing trials and eventually she’ll get a safe food. There are NO FPIES specialists where we live, and no knowledgeable drs that I’ve found.

    Any thoughts?

    Ps, so thankful for your blog!

    • Carrie says:

      Hi Alyssa!

      I’m so sorry to hear about your daughter. I’ve been there and I know it’s scary.

      In my opinion, it’s worth it to go see the doctors. I’m NOT a fan of doctors in general, but these doctors were lovely and even though they weren’t able to offer much in the way of new treatment options, they eliminated some concerns and validated our insanity.

      In the midst of the FPIES insanity, when you start to wonder if you are actually losing your mind, hearing that you are not insane, that this is happening, and that you’re doing a great job is extremely valuable.

      If there is more going on with your daughter, they would be the types that could catch it. But even if there is nothing more and all they do is confirm what you know, hearing it from FPIES knowledgeable doctors will be a huge comfort and will serve to bolster your resolve going forward.

      I say, if you can at all afford it, go for it.

      Oh, and thanks for letting me know this blog is still helpful. We’ve sort of meandered out of the FPIES world and into new, weird and rare conditions, so this makes me feel useful. 😉

      Hugs and God bless you!!

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