Fingers doubly crossed.

Hooray for safe foods!

Five, maybe six (yes SIX) foods!

1. Carrots

2. Broccoli

3. Quinoa

4. Potatoes

5. Peaches

*6. Corn

We tried coconut, but he hated coconut manna enough to gag at even trace amounts. I decided to stop the trial until I could buy coconut oil, flour, flakes, etc. and try another way.

Corn is a maybe. He wouldn't eat enough Kix or Corn Chex to know if they are a pass, so I tried polenta today. Chuffy LOVED it, and I am hoping that means corn is a go. I know it isn't very nutritional, but the idea of corn bread, muffins, polenta, cakes, pancakes, and chips really will add some fun and variety to Chuff's diet. I even found quinoa pasta, but it contains corn. This pass will be a biggie!! Maybe we will be able to make a birthday cake after all...

Chuffy update...Chuffdate?

We went to Mt. Sinai in March an met with famed Dr. Nowak. We found out Chuffy was anemic (his level was 4), and had low vitamin D. They did some prick testing. They tested 19 foods and he had no reactions (other than the baseline one they said everyone reacts to). He didn't react to rice or pears or apples which we knew were triggers. Oh well, that test was a bust.

We were given a list of foods to try starting with carrots. He had no safe foods at the time. While at Mt. Sinai we met with an allergist who helped answer any questions we had. We were also told we would do an in-hospital oral food trial of wheat when he turns one. How scary is that?!?

We went home and tried carrots. After a 2 week trial and a 3 day break we found our very first safe food! Whoo hoo!

Then we tried white potato, and had our second success! WHOO HOO!!!

Next we tried bananas because Chuffy didn't like potatoes and we thought we could skip ahead down the list and try something sweet a kid would like. Then we could mix potatoes with bananas to sweeten them up. He loved bananas. Adored them, actually. He ate puréed and freeze dried pieces (his first real solid food EVER). Day 15 brought a fail. Ugh. Nothing too major, but it was devastating. He seemed to be doing so well and he loved them. I thought a fail was coming because he was really refluxy and got the allergy ring diaper rash. The night I found the rash he projectile vomited once, screamed for 45 minutes, threw up again and was fine. He had cold-like symptoms for about a week wich could have been our first clue. I remember reading something like "3 symptoms = a fail" on an FPIES page.

Well, 1) stuffy nose/ cold 2) allergy ring rash 3) projectile vomit 4) reflux

So even if it *was* just a cold, he still had 3 signs of a fail.

I am nervous about what to try next. Dr, Nowak suggested sweet potatoes then butternut squash, but I am contemplating quinoa. I really don't know what to do. I just get so frustrated because I want to be able to feed him whatever we eat. I want him to be able to sit with us at a restaurant and nibble on bread or puffs, or a teething biscuit while we eat. I want him to have a cake for his birthday and not puréed carrots and mashed potatoes. I want him to be able to be just like all of the other kids. I want to be able to put him down to crawl without the fear of food crumbs. FPIES really is a painstakingly slow process. I know we will get through it eventually, but it is just so darn hard.

Rice, rice everywhere

Dining out is not something I frequently do, but there are the days when we are running a million errands and don't have time to eat at home. I have found that eating on the run is not easy with FPIES. Many restaurants do not want to post the ingredients of their products online because their recipes can be stolen and recreated. To solve this problem, they create checklists of common allergens (wheat, peanuts, dairy, soy, tree nuts). Rice is NEVER on this list. To help make things easier, I started compiling a list of fast food/chain restaurants meals with rice. If you know
of any restaurants or food items that contain rice, please let me know so I can add it to my ever growing list!

Burger King:
French Fries
Veggie patty
Chicken Fries

McDonalds:
Grilled Chicken Fillet
Bagel
English Muffin
Griddle cakes

Wendy's:
Crispy chicken sandwiches
Crispy Caesar wrap
Baja Salad (in tortilla chips)

Subway
Veggie patty (we learned that one the hard way)

Panera
makes you search individual food items. I did not find rice in any of my searches, but I did not search every menu item.

Olive Garden
Does not list any ingredients, but a checklist of common food allergies. Of course rice wasn't on the list. An e-mail from Olive Garden said they do not know if rice is in any of their meals. What?! How do you NOT know a list of ingredients? I'm not done with this place yet...

Dunkin Donuts
Bagels
Bagel Twists
Big 'N Toasted does not list ingredients, so I would stay away

The Cheesecake Factory
waiting for a reply email, but it was reported that their french fries contained rice

Starbucks
Does not list ingredients, but says that their Apple Bran Muffin contains rice
I sent them an email asking about other menu items.

Non Restaurant Items

*NOTE: MOST GLUTEN FREE OPTIONS CONTAIN RICE AS AN INGREDIENT*

Trader Joe's
Trader Joe's tortilla chips
Mochi (covered in rice flour)
Carmelized Nut Trio (package of carmelized mixed nuts) Oddly, their Pecan Pralines which are identical do not contain rice...
Annie Chun's soup bowls (Udon Soup, Miso Soup)

Misc. Supermarket Items
Applegate Farm Organic Chicken Strips
Arnold Bread: Double Protein
Alexia Waffle Fries
Shaped Sprinkles on supermarket cupcakes/cakes
Pilsbury Pie Dough
Yummy Earth Organic Lollipops (love how the label brags how allergy free they are)
Kashi Go Lean Honey & Cinnamon Oatmeal
Saki (URGH! I guess if sushi is out, saki should be too)

On a positive note: Girl Scout Cookies do NOT contain rice ingredients!

allergist

We took Chuffy to a local allergist on Tuesday. He was super sweet, but never heard of FPIES. After hearing about his symptoms he diagnosed Chuffy with enteropathy. He took two monster vials of blood to test for IgE reactions to the common triggers. The results come back in ten days and we'll know if we have to carry an epi pen for any reactions.

We were told to avoid all grains and dairy and to introduce fruits and veggies one at a time waiting 2 to 3 weeks per food to test for a reaction. I was told that I can still keep breast feeding and I don't have to avoid any food (other than rice, which causes him to get irritable, vomit and have bloody stools even through my milk), but if I notice he reacts after I eat certain foods, to certanily cut them out of my diet. He wants us back in 4 weeks.

After I got home I did some research on enteropathy. Basically, it is the same thing as FPIES but it does not impact the colon. FPIES reactions usually include bloody stools whereas enteropathy does not. Keegan certainly gets bloody stools after he ingests rice, so I think he definately has FPIES. This is why we are going to Mt. Sinai in March. They have done so much research with FPIES and have so many patients with it, so I will trust their diagnosis more than a doctor not familiar with it.

Where to start?

As far back as I can remember Chuffy had funky diapers. His stools were looser and smellier than his older brother Munch's. I chalked it up to each kid being different.

When it came time to start solid food Chuffy ate like a champ. Munch hated baby food and still has an aversion to anything with a similar texture. Chuffy begged for more, often screaming because I couldn't shovel it in fast enough.

Then after a few weeks of intermittent feeding, came a few incidents of projectile vomiting. The first time I chalked it up to bad gas because he had a big bowel movement after. The second time Hubs said it was from the rice cereal. I told him that was impossible because rice is so gentle on bellies. Well, that night was my scariest night ever. His episode of projectile vomiting lasted from 10:20 pm-2:30 am straight. He puked until nothing came out and then he heaved. For HOURS. It was not just puking, his eyes rolled back in his head and he waas cold/clammy to the touch. In retrospect I feel that he was going into shock, but I did nothing because our doctor's emergency help line said to do nothin unless he goes 6 hours without a wet diaper. I took him to the doc the next day and said it was probably a virus because rice is so gentle. I was told to wait a week or so and try rice again because we needed to give his stomach time to heal.

About a week and a half later I tried rice cereal again. I mixed it as usual with expressed breastmilk and tried to spoon it in Chuffy's mouth. He wanted no part of it, so I only managed to get a few spoonfuls in. Two hours later to the minute Chuffy started projectile vomiting. I knew what I was in for so I had my MIL come and get Munch so I could tend to Chuffy. Hubs got very scared and googled "projectile vomiting rice ceral" and found FPIES. He sent me the link and it confirmed every symptom Chuffy ever had.

*mucousy, watery stools that smelled like buttered popcorn (yum, I know)

*inability to sleep for more than 2 hours at a stretch

*painful gas

*red ring of a diaper rash

*lots of spitting up (even as a tiny baby, his spitting up was more like throwing up)

...and so started our journey.