Drum roll please….

“Food Protein-Induced Enterocolitis Syndrome” otherwise known as Fpies. To put it very simply- a person with Fpies  can not process the proteins in certain, many or most foods.

Never heard of it?  I hadn’t.  Until a few years ago when one of my best friends Ashley (aka Magazine Mom, my sidekick) discovered her son has it. Poor little man. It was a crazy time in there lives. My heart ached for them.

This is what Sneaky B has. Fpies, although acute.

sneaky&hb.jpg
Fpies kiddos- can they be any cuter?

Okay can I say what we are all thinking. What are the freaking chances of this happening?  Two friends with new babies a year and a half apart. Both have this random never heard of syndrome?  There has to be a mathematician out there who can tell me the odds. Maybe we need to hit up Vegas?

I do feel fortunate though. Lucky for me I have a friend I can go to for any questions I have about this Fpies. Lucky for us, we are go getters when it comes to our kiddos. Somehow I think we will be planning something big, yet again, for Fpies kids. Lucky Fpies. Lucky us!

I have a lot to learn still. LOTS.  She will probably grow out of it. She will most likely always be intolerant to corn which is her biggest trigger (using Fpies wordage:  “trigger” food that causes reaction). Now that we know she has Fpies, I feel good. Not knowing, for me, is the worst. Now we can look Fpies in the face and take it on. We accept this challenge. newsignature.jpg

 

Advertisements

hating food

I guess to say “hating” food isn’t really the best thing to do. We are teaching Kiddo that “hate” isn’t a word we use in our family (along with “can’t”) but at the moment I truly do hate food, and she can’t read yet, so I am going to use HATE. And…maybe not food in general, but all the companies who make food to make our lives a tiny bit easier… I am hating them at the moment.

Sneaky B has a difficult time with food. She has a difficult time gaining weight because of this; she has dark circles under her eyes. She is not “allergic” to any food but she reacts to food in a different way. Her little tummy will hurt so much from certain foods that she is unconsolable, scream-crying (we call it the emergency room cry) for hours. Typically 6-7 hours after bad food was eaten, it will begin by being overly fussy and not wanting anything but mommy. Then the emergency room cry will being and 3-4 hours later it stops by her purely exhausted self falling asleep. A few hours later we have the nasty “reaction” poop, or maybe we should call it radio active poop. It’s the most vial poop I have ever experienced. My poor baby, I hate when this happens. It sucks! Especially when I accidentally eat something she can not have.

nofood.pngSince I am still nursing, what I eat effects her too. “Luckily” I only have to avoid wheat, dairy, soy and corn. HA! Only! Have you ever read labels on food? Seriously, it’s completely ridiculous what “they” put in our food. I have eaten wheat/gluten free for years (before it was popular) so I am used to avoiding that. Dairy hides in food too, it seems a bit easier to avoid than the others.

But corn… corn comes in so many forms and it is Sneaky B’s worst so far. Corn syrup, maltodextrin (made from corn), corn starch these are in everything! If it’s gluten free, it’s typically made with corn. Want to take a headache medicine…nope corn starch. Corn is in ketchup, mustard, chewing gum, soy milk, some frozen fruits and veggies, salad dressing, even toothpaste, the list can go on and on.  I was happy to find those little cubes of frozen herbs, basil was my favorite, a small connivence,… oh guess what, they put corn starch in it.  Mommy’s sorry Sneaky B…  It’s everywhere!

Next our dear friend soy. I used to be a soy consumer. I was a vegan before Sneaky B was born. But since this all started I was a total cranky bitch with eating just fruit and veggies. That lasted two days, to be honest, and then I had my first bit of meat in 4 years… wow! okay, it took awhile to get used to the texture but it was so good, and I was my normal happy again. It’s what my body need now. So no more tofu, soy-cheeze, soy sauce for me. HA do you know how many other places soy hides? Seriously it’s in more things that our dear friend wheat/gluten. Deli sandwich (on gluten, corn & dairy free bread of course) (and yes they do make that)- NO! Soy is in almost all deli meats. I have found one. just one, that I can eat and it’s labeled “Healthy Roasted Turkey” and it’s made with potato starch. Isn’t that funny, the “healthy” turkey has potato starch. Why does it have anything in it at all -other than freaking turkey???

I have become a pro at reading labels and it’s a good thing I enjoy cooking from scratch. I still try to find the “easy” food that I could eat, just maybe there is something out there I have not found yet. There have been a few occasions when I have the girls at the market looking for a quick dinner or lunch, they are whining and I am so hungry I don’t even care that everyone is watching me crying down the aisle picking up an item, reading the label “Nope! freaking corn!” “HA! Nope corn and soy!” It sucks! But I also know that for me this is a short lived moment in my life. Once I am done nursing, I can add back corn to my diet. I am not so sure I will add soy back though, we will see about that. But for Sneaky B, what is in store for her?

sneakyb11monthspic.jpgWe find out next week what exactly she has, I have an idea as to what it is, but I will keep that a secret until we get the word from the doc.  So far she can’t eat wheat, soy, corn, dairy, apples and pomegranates (which made her throw up!). I have my suspicions about potato too, but am waiting to try that again.  It’s a slow process, and that’s okay. Its frustrating. At times I think I am crazy. How can my eating four pieces of popcorn make our daughter be so wildly miserable? But it all comes down to this. I know I am not crazy. I know food affects her in a different way than most. I know when we are eating only what she can, so far, she is happy, the dark circles under her eyes are gone, she likes to sleep (!) and she is starting to gain weight. She is always wonderful.newsignature.jpg