Are You An FPIES Mama?

Are You An FPIES Mama CradleRockingMama.com

Recently I met a new FPIES mama, and talking with her about her overwhelming journey into the world of FPIES prompted me to start re-reading my own story from the beginning.

When I got to my post from September 4, 2012, I laughed out loud.

I’m amazed that I wrote something so spot-on so early in my FPIES journey; almost every word of this is still true even now, almost two years in to life with FPIES.

So I thought I’d recycle this post to share with my new readers who may not have seen this the first time around, and add a few new quiz questions, too!

Oh, and my disclaimer at the end is still true…but more of these apply to me now than did back in September 2012!

Enjoy a laugh!

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I started writing a post about what life as an FPIES Mama was like, with all the best intentions of helping people understand the stresses and challenges of our lives.

During editing, I realized I was depressing myself! It IS hard, but there is still joy in life!

Instead of being serious and depressing, I made up this handy-dandy little quiz that will help convey what FPIES living is like, while giving my fellow FPIES Mama’s a laugh (hopefully)!

ARE YOU AN FPIES MAMA?

(Answer “YES” or “NO”)

  1. I have photographed my child’s poop.
  2. I have scrutinized my child’s poop.
  3. I have spent more than three hours of my life on the phone with manufacturers about ingredients in food, skin care, or cleaning products.
  4. I give small children with cookies suspicious glares when they approach my child.
  5. I avoid play dates like the plague.
  6. I have bought kitchen utensils or appliances for the sole purpose of decreasing cross-contamination in my kitchen. OR
  7. I have made my home a “trigger-free” zone where only safe foods are allowed.
  8. My family has given up on having family dinners, and now eats in “shifts” so our FPIES child doesn’t feel left out.
  9. I have learned at least three new ways to chop vegetables.
  10. I now cook with ingredients that I didn’t know how to pronounce a year ago.
  11. I now cook with ingredients that my husband thought were fictional foods in fantasy novels (i.e. Millet).
  12. I now think it is normal to cook 2 or 3 full, separate meals at each mealtime.
  13. I can’t really buy any food for my family at a regular grocery store any more.
  14. My stack of medical bills is thicker than my child’s foot.
  15. I know what a 504 plan is.
  16. I have a 3 page, typed instruction guide to give to the babysitter. OR
  17. I have decided that there is no one I can trust to keep my child alive, so I never EVER leave their side. Ever.
  18. I have bailed on my family for holiday meals because my relatives either don’t understand, won’t accommodate, or flat-out undermine my children’s food restrictions.
  19. I have bailed on birthday parties, pot-lucks at church, or other food oriented gatherings because it was ‘too dangerous’.
  20. I will not be able to afford a vacation, fund my retirement, or build a savings account for the next 4 years (at least!), but…
  21. I have traveled more than 200 miles to see a specialist for my child.
  22. I have bought and enthusiastically extol the virtues of amber necklaces.
  23. My first instinct when my child is sick is to check what essential oils I have in my cabinet.
  24. I prefer to use garlic-infused olive oil when my child has an ear infection before going to the doctor for antibiotics.
  25. I have bought a whole, grass-fed cow.
  26. I have either planted, or seriously considered planting a garden.
  27. I spend so much time in the kitchen I bought those cushiony floor mats for in front of my sink, counter and stove.
  28. I have taught doctor’s about my child’s condition, and told them how to treat it.
  29. I sweep or vacuum my dining room at least 5 times every day, because crumbs are evil!
  30. I’ve installed a lock on my refrigerator and pantry doors.
  31. Any time we leave the house, I have to pack full meals and snacks for every member of the family.
  32. I’ve forgotten what fast food tastes like.
  33. I’ve resisted the urge to slap someone who told me “Oh, a little bit won’t hurt him!”.
  34. I know what a T-cell is.
  35. I checked out a High School Biology textbook from the library to brush up on my knowledge of the gastrointestinal system.
  36. I’ve lost more than 20 pounds on an elimination diet so I could keep nursing my child.
  37. I’ve memorized the ‘mystery phrases’ manufacturers use in their product labeling.
  38. I know where all the local farmer’s markets are, and have become friends with a few of the farmers.
  39. I called my Grandma up to have her teach me how to preserve food for year round use since my child can only eat organic, un-processed fruits and vegetables.
  40. I can now speak “medical”.
  41. I have taught doctors about FPIES, and how to properly treat and maintain it.
  42. I consider it odd that people don’t “interview” doctors before becoming their patients, now.
  43. I keep a bag packed for myself and my child for the hospital at all times, that includes copies of their medical records.
  44. I hardly ever see or speak to my friends anymore, but ‘chat’ with other FPIES Mama’s on message boards every single day.
  45. There’s an election this year? Sorry, I’m too busy taking care of my family to have noticed.
  46. There’s no old wive’s tale, herbal remedy, or alternative therapy out there that I won’t at least consider for a moment for my child (even if I eventually discount it).
  47. I would go to hell and back – and sometimes think I already have – to get my child the proper medical care.
  48. I spend more time in prayer to my God than I ever did before.
  49. Some days I just want to cry, but then I see my baby smile and giggle and I somehow find the strength to put on my big girl panties and keep going.

If you answered “YES” to more than…oh, geez – you FPIES Mama’s know who you are! If you answered “NO” to most of these, then you aren’t – but please be nice to the Mama’s that are. They need your friendship and support very much.

Why don’t you offer to come do their laundry one day? They’ll love you for it!

Disclaimer: Not all of these conditions apply to me!

Do you have any quiz questions to add?

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8 Responses to Are You An FPIES Mama?

  1. Cathy says:

    Haha! #4 is the worst. I find myself glaring at innocent children eating goldfish crackers, I just can’t help it – I’m glad I’m not alone. Also, almost purchased those cushy floor mats the other day…but see #14 🙂

    • Carrie says:

      Oh, wow, Cathy…every time I have to go to Bed, Bath and Beyond, I actually pet those floor mats like they’re exotic fur or something. I want them so badly! LOL But like you, no moolah to spend on that, when I have to toss food processors every time we have a food trial flop.

      Just this weekend there was a kid on the playground eating some horrible bagged treat concoction that was a color never found in nature…and twice I almost told him he needed to take his food elsewhere before I realized I’d sound like a crazy person! I settled for scrubbing Zac’s hands intensely the minute he was done playing, and making sure anything he touched was removed and sterilized before he got it back. It’s insane, I tell ya!

  2. Love this! My husband read it, and asked if I wrote it. He now understands why I spend time on facebook to talk to other mamas who have children with FPIES. No one else can truly understand it all.

  3. Bisi says:

    I am so glad I am not alone!! My husband was laughing at me at our last ER visit for a FPIES episode!! They had no clue what FPIES was!! At one point we didn’t see the nurse or doctor for a while. ….My husband said they are busy reading up on it so they don’t come in here and fumble with you!! Lol!! I said okay that would be best cause it will go bad really quick if they do!! My son is about to be a year in two weeks. Allergic to milk soy eggs corn rice and oatmeal!! Your post saved his life!! He had gotten so thin when he was 7-8 months old. …. found a post on quinoa teething biscuits. I went out and bought the brand you suggested …Ancient Harvest!! The quinoa flakes was our substitute for rice/oatmeal cereal!! Within a week he chunked right on up!! Now I’ve been searching forever for a quinoa only pasta and you have don’t it again!! I pray for God to bless your family and I thank God for using you to help many mommas!! You are blessing and my family will be forever grateful!! Any recipes for pancakes??

    • Carrie says:

      Bisi, wow! Thank you so much for sharing your story with me. I cried when I read this. I’m grateful and humbled to be able to help anyone I can, and it is so encouraging to read that I’ve been able to do so. Thank you.

      As for pancakes, I have a few recipes on my blog. Just to let you know, the “pancake surprise” recipe that uses spaghetti squash works just as well with a cup of pumpkin puree instead of the squash. I substituted one day out of necessity, and it came out like a pumpkin bread pancake. Not a typical pancake, but both Darrel and Jed liked it a lot! 🙂

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