FPIES Family Life

• What is FPIES
• Diagnosis process
• Advice to manage it

Today, no one knows the odds of a second baby having FPIES if the first did. The possibility of dealing with FPIES again was certainly a significant factor in the timing of our decision to have our second baby. We went into marriage hoping for two, but managing through an FPIES situation involving 15 trigger foods took its toll.

FPIES is Food Protein-Induced Enteroncolitis Syndrome. It is a non-IgA allergic reaction to the proteins of certain foods when passed through the GI system. Symptoms vary based on the intensity of protein exposure, level of sensitivity to a certain food protein. Different children react to different foods. One sibling may have it while the other doesn’t, or the other may have it to the same or different foods. Typically children have only 1 or 2 trigger foods, but mine had over 15. Usually (90% of) kids outgrow it by age 3, however mine outgrew only a couple.

Common foods I’ve observed: Rice, wheat, egg, dairy, soy, nuts, beans, beef.

Everything changes when you become parents. FPIES adds another dimension to that change. Beginning parenting is already disorienting and frustrating. Parents go through the process of decrypting a specific baby’s messages, often communicated combinations of writhing, crying and screaming. Neither the parent nor the newborn knows what’s going on.

When it comes to FPIES in a newborn, no one knows what’s going on. There are layers of mystery and few signs to explain what a baby is experiencing. FPIES is a very new diagnosis with very limited medical studies and evolving research.

Parents, like us, take the newborn to the pediatrician and talk about signs of discomfort and inability to sleep more than 40 minutes.

• The initial diagnosis: Baby is getting acclimated to the world.
  • Treatment: Deal with it.
• The next visit diganosis: Colic.
  • Treatment: Deal with it.
• The next diagnosis: Acid reflux.
  • Treatment: Medicine
• The next 1 to 3 visits’ diagnosis: Hmmm.
  • Treatment: Deal with it
• The next visit: Baby demonstrates explosive diahreah, sustained vomiting, or other alarming symptom. Alternatively, you had spent a couple weeks on an elimination diet and the baby’s “colic/acid reflux” stops completely. You’ve also researched FPIES and mention that possibility.
  • Diagnosis: FPIES, maybe.
  • Treatment: Eliminate most common allergens (wheat, egg, soy, nuts), or if you’ve already eliminated everything, then keep it up and add more foods while still avoiding most common allergens.

Now that you’ve been diagnosed, my advice is to read bloggers and join groups of parents going through this. Collect ideas and information. We didn’t have much info when our first was diagnosed in 2007, so what got us through was wiping the kitchen clean of trigger foods and eating together to avoid those foods. By doing it together, we kept a healthy (actually, even healthier) diet and all have foods that we love without missing the trigger foods (at least not too much).  

Allergy Free Eating on Vacation

Visiting people overnight is never easy with food allergies, FPIES, intolerances, or any signifncant diet restriction. In some cases, I've heard of people taking a vacation from their diet restrictions, but some people have restrictions where it literally hurts too much to do so. FPIES is one of them, and the one I'm dealing with in my family.

We're at grandma's house for a few nights, and the food situation still isn't easy. We don't visit often since we live out of town, so it's not the norm for the family to adjust to the diet restrictions we have. It just takes a couple of days before you start hearing the sighs of exhaustion over us asking to check the ingredients for packaged food that is purchased in their household.

Anyone reading this who doesn't already know, avoiding packaged food eliminates 80% of the challenge in dealing with diet restrictions! Avoid it, and save yourself a ton of aggravation.

While I've been visiting, I've still been doing a little bit of cooking, like gluten-free muffins, gluten-free macaroni and cheese, and allergy-free recipes like shredded chicken. It's been a good time with just a few food bumps here and there when the other kids want something mine cannot have. We're thankful my wife sticks to the diet as strictly as the toddler, as it makes him more okay not eating something his mom won't eat anyway.

Gluten-free Fish Sticks

Easy!

1. Heat olive, canola, vegetable, or peanut oil in large skillet
2. Season rice flour in a shallow bowl for dredging - using Goya Adobo, of course
3. Dredge cod, swai, basa or any white fish cut into strips or chunks into flour
4. Once oil is nearly smoking, add fish sticks
5. Turn and cook each side for about 2 minutes - for a total of 8 minutes max
6. Remove from oil and place on paper towel to cool

Serve with green veggies and french fries - Costco has great gluten-free frozen waffle fries right now.

Garlic Chicken and Fingerling Potatoes

This one's just like making fried potatoes, but with chicken.

• 1 whole chicken, cut up leaving skin on
• 2 medium onions - you can't have too much, really
• 2 bulbs of garlic, cloves separated but leaving shell on each clove
• 1 or more pounds of fingerling potatoes (small red potatoes or even idaho potatoes are fine, just cut larger ones into 1 1/2 inch pieces)
• Olive, vegetable, or canola oil - 1 1/2 to 2 1/2 Tbsp depending on how large your pan is

1. Heat large skillet on high (make sure it's one you have a lid for)
2. Season chicken pieces with Goya Adobo
3. When oil is starting to smoke, add chicken skin/meatiest side down
4. Season the side facing up, if you haven't already
5. Keep heat near highest setting throughout this recipe
6. Slice onion into thick slices
7. Once chicken is browned on one side, add onion, garlic cloves, and potatoes
8. Then turn chicken over and let some of the onion and garlic fall to the bottom of the pan
9. Add pepper, if you like
10. Cover and cook on high for about 10-15 minutes, turning chicken and vegetables two or three times to ensure even browning
11. Once onions are caramelized and potatoes are cooked through, your chicken should be at 180 degrees internal temp and your dinner is done

Serve on a large platter with any vegetable.

Play Dough: Allergy Free

This gluten free play dough will last at least a month just by storing in ziplock bags and storing in a cool place like your refrigerator.

For real fun, make it with your toddler, especially the part where they add the food coloring and gradually see the color get more and more brilliant!

Simple: water, corn starch, and salt

Recipe at GoDairyFree.org

Alternative: water, corn starch, rice flour, salt, cream of tarter

* FYI, cream of tarter at Target is very cheap (www.Target.com)

Recipe at Parents.com

Fast and Cheap Rosemary Chicken Stew

10 min prep + 25 min cooking time

Had this at Maggiano's and the wife demanded I make it the next day. By the way, Maggiano's will accomodate any food/diet restriction and even has gluten-free pasta. The even accomodated all of my family's allergies without a problem and served delicious food.

This is cheap because you use whatever chicken you find on sale. It's fast because you don't debone or pull the skin off or anything. You just sear the chicken, throw it in the pot, de-glaze the skillet and basically make a soup.

The keys to this recipe are...
* Searing the chicken until golden brown (but certainly not cooked through) before putting it into the pot - of course, I like to sear it in bacon grease.
* Adding ample celery
* Adding a good amount of rosemary (and going light on the tyme)

Steps:

1. Season a whole cut up chicken or split chicken breasts (with skin and bones) with Goya Adobo
   
2. In huge skillet with oil, sear chicken on all sides on high heat until browned on all sides
3. Place chicken into large, heavy pot
4. Add a little (about 1/4 c) broth, beef or chicken, into pot and set to med low heat
5. Turn skillet down to med-high and add diced onion, salt and stir constantly
   
6. Add splash of marsala wine (or any red wine or vinegar substitute)
7. Add 3+ cloves diced garlic - I always forget this when I'm in a hurry
   
8. Stir to pick up the brown bits in the pan
9. Stir in 1 or two 14 oz. cans diced tomato
10. Stir in a little tyme
11. Stir in loosely chopped rosemary
12. Stir in chopped celery (3+ stalks) & carrots
13. Stir in 1 cup of water
14. Pour contents of skillet over chicken in pot
15. Add more water until almost covering all chicken
    
16. Add 3+ dried bay leaves
17. Add pepper to taste
18. Stir and bring to boil
19. Then set to low and cover to simmer for 20-25 minutes

You will have a lot of broth with this recipe, which I suggest stirring into well cooked rice and vegetables for a delicious soup, or using as a base or flavoring for something else.

Meatloaf a la Alton Brown

Loved this recipe (click here) with the following substitutions/modifications:

1. Homemade allergy-free bread, or store bought, or gluten-free pretzels
2. Egg substitute (and doubled the amount)
3. Used roasted red pepper, and it was outstanding
4. Extra Worcestershire
5. Extra honey (and maybe a little brown sugar)
6. To really glaze it, cook the last 10 minutes on 450 F, or broil it for a few minutes on a higher rack

Fried Swai Fish with Saffron Pasta

The two year old loved this one.

1. Cook brown rice pasta in water with salt
2. Press fillets into rice flour and Goya Adobo mixture
3. Fry on high in skillet with olive oil
4. Flip once and grill other side on high
5. Remove fish from pan and set aside
6. Drain pasta and rinse well
7. Add to same skillet that fish was in, thin sliced onion and salt
8. Add more olive oil if necessary
9. Saute on med-high heat until slightly brown, stirring constantly
10. Add minced garlic and a pinch of saffron and keep stirring
11. Add a few splashes of white wine vinegar
12. Add noodles and keep stirring (add more oil and white wine vinegar if necessary)
13. Add fresh diced tomatoes or cherry tomatoes
14. Keep stirring until everything is incorporated and warm, then serve