Sunday, October 1, 2017

Embracing the Gadgets


Before I had my two children, I was never much of a kitchen gadgets or appliances person. Most of what I needed to do in the kitchen, I could do by hand, and I didn’t want to pay for them, didn’t want to clean them, and I didn’t want to try to find space to store them in our usually small kitchens.

And then FPIES.

My oldest had a long list of fails as a toddler, but wheat was one of our safes, and there were a very, very few types of packaged breads he could eat. But between on-and-off availability and shifting ingredient lists, I would spend what felt like hours in the bread aisle muttering ingredients aloud to myself, trying desperately to find a loaf that was dairy-, egg-, soy-, and corn-free.

The most frustrating thing about this experience (apart from doing it several months pregnant and with a toddler), was that it shouldn’t have been that hard. Bread doesn’t need all those extra things in it. When my local grocery stores stopped reliably carrying anything we could eat, I started researching bread machines. My mom, always finding ways to help in our FPIES journey even while living in another country, offered to buy us one. Thanks to the wonders of the internet and free two-day shipping, it arrived that week, and I immediately put it to the test.

It sounds silly to say that a bread machine changed my life.

But I use it 2-3 times a week, and have for over three years now. I make all our own bread. No more wasting ten minutes in the bread aisle. No more dealing with the ever-mounting frustration as you realize that this loaf has whey, and that one has corn flour, and this one has soy in one of its myriad forms. Instead, five minutes of measuring, one push of a button and in less than four hours, there’s a fresh loaf of bread ready to eat. I’ve also used it to make pizza, soft pretzels, cinnamon rolls, hamburger and hot dog buns, dinner rolls, and naan. It’s gotten me through two FPIES kids, my youngest with only a dozen safe foods at the moment, and my own diet, which is dairy-, egg-, and corn-free.

Could I have made all of those things without my bread machine? Maybe. Theoretically. But the stress, hassle, time, and mental energy it has saved me has been huge. And, realistically, I don’t know that I would have been brave enough to try. There’s just something so intimidating about yeast.

Even with as much as I love my bread machine, it still took me a while to embrace other kitchen gadgets, probably because my oldest started to outgrow his FPIES, thus opening up so many more commercially made foods, and I had hopes that my youngest would as well. But as my youngest is now approaching three, and showing no signs of outgrowing FPIES any time soon, I’ve started to cave. He deserves fun foods too, and if I don’t make it myself, he usually can’t have it.

A candy thermometer allowed me to make lollipops, and, more recently, marshmallows. An ice cream maker purchase after our recent move to Texas gives him a treat to help beat the heat. The waffle maker has been fun for our whole family – including any overnight guests we have.

As FPIES parents, we need all the help we can get in the kitchen. I’m not saying you should go on a spending spree and rack up credit card debt stuffing your kitchen cupboards. But if there’s a gadget that could make your life easier, and you can afford it, go for it! Maybe there’s something like a waffle maker, that would let you try a new texture or presentation for your kids, or a gadget that will do what you’re already doing by hand, but in less time and with less effort. I know some families have found a Vitamix to be a huge help in making their own milks, or have gotten a lot of use out of a stand mixer.

It doesn’t even have to be something that would cost hundreds of dollars to be a big help. For some reason, I have always been completely incompetent when it comes to making cut out cookies, and I finally just gave up altogether. Less than $10 for a set of plunger cookie cutters, and a little experiment with a recipe, and now my kids get to enjoy their own animal crackers.  You can find that recipe here

This new perspective has helped my focus change from what we can’t eat or make, to thinking of ways that I can work around certain problems. Instead of “Oh, he’ll never be able to enjoy that,” I think “What would it take to make that? Is it worth it? Are there any alternatives? What else could I make that would be similar but still fun?”

 FPIES is a battle, no doubt about it, and a well-equipped kitchen can be a strong ally.

Now if you’ll excuse me, I think I have some more gadget research to do…

What gadget would you splurge on that would make your life as an FPIES parent easier in the kitchen?





This guest blog post written by Janie Dullard. Janie lives in Pearland, Texas with her husband and two children, both diagnosed with FPIES as infants, though her oldest has now outgrown it. She works as a freelance editor and has written a children's book, available here: https://www.amazon.com/Elephants-Tour-Yellow-Umbrella-Company/dp/0990799522/ . Her days are spent chasing after her two preschool-aged children, working, and concocting strange FPIES-friendly foods that her children will sometimes even eat.



Saturday, September 16, 2017

Someone's In the Kitchen with FPIES: Animal Cookies/Crackers


Involving kids in baking safe treats
is a great way to encourage
a positive relationship with food.
One of the things that I find I struggle with as an FPIES mom is making food fun for my kids. My youngest can eat very few packaged foods, and so anything fun he gets has to come from me. I try to find things both he and my oldest (now FPIES free!) can both enjoy while still not spending ALL my time in the kitchen.

I’ve long had a love-hate relationship with rolled and cut out cookies. Normally a (mostly) decent baker, I have always struggled with not ending up with various disasters when trying anything that involves cookie cutters and a rolling pin. However, I saw some plunger-style cookie cutters in the shape of zoo animals and I was smitten. I knew I had to have them, even before I had any idea what I would do for the dough.

 I came up with this recipe, adapted from these: http://www.isachandra.com/2008/11/chocolate-chip-cookies/, and fortunately, the plunger-style cookie cutters were a life saver. I’m never going back.
 Plunger-style cookie cutters are WONDERFUL

These cookies are tasty, fun for my boys, and not entirely unhealthy for a treat. That’s a win in my book!

Animal Cookies:

Ingredients
1/3 cup olive oil
½ cup turbinado sugar
¼ cup rice milk
1 tsp vanilla

1 ½ cups all purpose flour
½ cup whole wheat flour
½ tsp salt
½ tsp baking soda

  • In a medium bowl add oil, sugar, milk, and vanilla. Whisk together vigorously until mostly smooth.
  • Add flours, salt, and baking soda and mix together.
  • Chill dough for an hour.
  • Preheat oven to 350°. Either grease a cookie sheet (can be done with your safe oil) or cover in parchment paper.
  • Working in batches, roll out dough on a lightly floured surface to about a quarter of an inch thick and cut out shapes, then transfer to prepared cookie sheet.
  • For extra definition, place cookie sheet with cookies in the fridge for about ten minutes.
  • Bake for 8-12 minutes, depending on how big your cookies are, or until the tops are lightly browned.
A zoo's worth of animal crackers!


Recipe notes:
*You can use any safe oil, sugar, or milk.
*If vanilla isn’t a safe, they’re still ok without it.
*I have not tried this with alternative flours.
*These also make great graham-style crackers, just cut out square or rectangular shapes with a knife, and then prick a couple of times with a fork.
*The dough may be a little difficult to work with. If you're having trouble mixing it all together, use your hands!

This guest blog post written by Janie Dullard. Janie lives in Pearland, Texas with her husband and two children, both diagnosed with FPIES as infants, though her oldest has now outgrown it. She works as a freelance editor and has written a children's book, available here: https://www.amazon.com/Elephants-Tour-Yellow-Umbrella-Company/dp/0990799522/ . Her days are spent chasing after her two preschool-aged children, working, and concocting strange FPIES-friendly foods that her children will sometimes even eat.




Join Us in the Kitchen!

There are a lot of amazing parents out there, cooking up some amazing creations in the kitchen for their little ones affected by FPIES! Are you one of them? We would love to feature you in our monthly segment, “Someone's in the Kitchen with FPIES!” Write an article, about 500 words or less, featuring a special tip, an allergy-friendly cookbook review, and/or anoriginal recipe and submit it to us viacontact@thefpiesfoundation.org. Upon approval, recipes will be published on our website recipe section and your article will be featured here on The FPIES Foundation's blog. For more information and submission guidelines, contacta.lefew@thefpiesfoundation.org today!







Wednesday, August 30, 2017

Raising FPIES awareness on The Mighty

A diagnosis of FPIES can be life-altering.  So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible.  


With over 150 million readers and thousands of contributors, The Mighty has been building a community of online rare disease support.  They “publish real stories by real people facing real challenges”.   They have created a safe platform for rare disease community members and organizations to connect with others, share their stories while raising awareness and support for rare diseases as a whole.  Together we are strong. 



The Mighty has given us the opportunity to share your experiences in stories such as:




We are proud to be among the over 200 rare disease non-profit organizations that support and partner with The Mighty. We will continue to bring additional awareness stories in the future. 

If you would like to contribute a story, please visit https://themighty.com/submit-a-story/