Friday, May 22, 2015

Someone's In the Kitchen with FPIES: Winter Veggies!

Someone's In the Kitchen with FPIES
I have always loved being in the kitchen and even though my eldest daughter's FPIES diagnosis threw me for a loop, it didn't change that love. Creating new recipes for her and her little sister, also diagnosed with FPIES, has become a way of coping with the ups and downs of this complex diagnosis.

That said, there have definitely been some frustrations along the way. Dealing with leftovers has been one of them! When each member of the family has a separate, distinctly different meal and when the kids are picky, leftovers are a big reality. Over the years, I have learned ways to not only use leftovers creatively, but also to use them to boost the nutrition content of the girls' baked goods.


Our Favorites-- Loving Those Winter Veggies!
My youngest daughter, C , is able to eat all forms of winter squash. When I roast a squash for her, I use what she does not eat to make baked goods and “Squasher Tots,” one of her favorite finger foods. One amazing mom I met on BabyCenter back when B was a baby, talked about using squash as an egg substitute. Now I know why-- it gives a wonderful texture to muffins and biscuits but it also helps them to be less crumbly! I have also used the squash to make homemade soup and a type of sauce for her pasta. Even the seeds can be saved-- toss them with a little oil and salt and roast them for a snack, make a seed butter, or even make a seed milk (I use this for baking). C would like to share her “Squasher Tot” recipe in the FPIES Recipe Box with you today! 




My oldest daughter, B, loves beets-- her favorites are the “stripey ones” (Chioggia). Not only are beets a nutrition powerhouse, they have a lot of uses in the kitchen. Just a touch of the puree mixed into a frosting recipe can make a beautiful red or yellow-orange color (depending on the beet variety you use!). The greens can be cooked or eaten raw as a salad. Our favorite uses for leftover beets include pureeing cooked beets to use: as an egg substitute in chocolate cakes, to change the color of biscuits or tortillas by adding beet puree to the dough, and in a new recipe, baked glazed beets. B would like to share the last recipe in the FPIES Recipe Box with you today!





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 an original recipe and submit it to us via contact@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, contact a.lefew@thefpiesfoundation.org today!


Friday, May 8, 2015

FPIES: Simple Words, Complex Realities




FPIES: Simple Words, Complex Realities
By Nichole L. Huff, Ph.D., CFLE

One evening last week, in reviewing the papers sent home in my kindergartener’s daily folder, I noticed a flyer for a school fundraiser. An ice cream social. On Friday my son could have a big scoop of ice cream from a variety of flavors, and could even top it off with his choice of sundae toppings. A simple flyer; a simple event. A good cause even, as the profits were to support overseas relief and education efforts. But to me, an FPIES Mommy, this flyer, fundraiser, and event were anything but simple.

No, this represented one more thing in which my son couldn’t participate. My 5-year-old, acute FPIES to milk proteins (with life-threatening vomit-to-shock reactions since birth), could not have his choice of ice cream flavors. He couldn’t add whipped cream and syrup and sprinkle it with candy toppings. Instead, because this event like so many others centered on food… he could not readily be a part of it.

A simple event yes, but a complex reality for our son.

The truth is, our reality is complex. My son has a special need. His need doesn’t involve physical, social, or learning accommodations; instead, his need requires dietary considerations. And that’s pretty complex given we live in a society focused on food. Fundraisers, potlucks, receptions, parties, dinners, birthdays, holidays—food is always involved. But for us (like other FPIES families), when food is involved, our child is often left out.

Thankfully Friday has come and gone. To address the fundraiser, I did what any FPIES Parent would do. What we do day-in and day-out. I took a deep breath and turned to my son, who was finishing his homework at the kitchen table. I held up the flyer and said, “Hey, buddy, did you know they are having an ice cream fundraiser at school this week?” As he nodded, face solemn, I continued, “Well, Mommy will send in a bowl of your ice cream on Friday. I’ll send a note for your teacher to keep it in the freezer until the fundraiser starts. That way, you’ll have a big bowl of ice cream to eat too. Will that be okay?” He paused and grinned, his face revealing an expression of relief, knowing that now he’d also be able to join in the fun.

And then, as I turned back to his folder, I wiped a silent, solitary, simple tear from my cheek.


I know I’m not alone. For other parents like me who manage a child’s special need, whether related to food or anything else, we are the simple champions fighting what often seems like a lonely, complex battle on behalf of our children. In reflecting on the FPIES in a Word campaign, I realize that words like frustrating, emotional, challenging, misunderstood, scary, and stressful quickly come to mind. As we recognize Food Allergy Action month, however, I invite you celebrate the other words that describe our journeys. We are Advocates. Educators. Protectors. We are Problem-Solvers. Normalizers. Navigators. We are Creative. Resourceful. Flexible. We are Strong. Hopeful. Determined. In a word? We are FPIES Parents: simplifying the day-to-day management of our children’s complex diagnoses.

As the parent of a son with FPIES, Dr. Nichole Huff is an assistant professor and Extension Specialist at North Carolina State University.  Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy.  She is a Certified Family Life Educator (CFLE) with the National Council on Family Relations.  Her areas of research include child development, parent-child communication, and bio-psycho-social health.  Dr. Huff also maintains a parenting blog at http://soapboxmommy.com/ 

Friday, May 1, 2015

Food Allergy Action Month 2015


Food Allergy Awareness Week (May 10-16th) has recently been expanded to include FoodAllergy ACTION month.  Plus, this year a National FPIES day on May 4th has been included to honor the month of Allergy Awareness. National FPIES Day is in addition to Global FPIES Day, on Oct.14th, established by The Foundation in 2014.  Two days to build further awareness to those living with FPIES!

We know that raising awareness happens every day for a family living with FPIES.  During these days of Food Allergy Action Month, we want to help you be prepared with a few quick and simple ways to share your awareness. We introduce “31 ways in 31 days” : 
  1. Awareness IS Action! Start a Conversation today. 
  2. Download and distribute “About FPIES” in your community – online and in person!   
  3. Share our “Have You Heard postcard
             
  4. Visit our FPIES Awareness page to print community awareness cards, rack cards, flyers and more to distribute to teachers, doctors, schools, and providers.
  5. Organize an FPIES Recipe Challenge  
  6. Change your social media banner or profile picture to FPIES in a Word” and invite your family and friends to learn what it is like living with FPIES, #AskMeAboutFPIES 
  7. Share our YouTube videos
  8. Receive a packet of preprinted awareness materials to distribute in your community. Write to: contact@thefpiesfoundation.org 
  9. Share your favorite recipes that you use to cook for your child with FPIES on the Foundation forum. 
  10. Color an FPIES is Rough, But I am Strong” mini book with your child 
  11. Have a packet of awareness and educational materials sent to a provider or hospital, simply send us the name/address of where you would like it sent- we’ll do the rest! contact@thefpiesfoundation.org
  12. Add the Foundation Support button to your blog or profile pictures.
  13. Submit YOUR inspiring story to us at: contact@thefpiesfoundation.org
  14. Share the FPIES Q&A page in your online social networks 
  15. Learn new ways of becoming an advocate 
  16. Contact the local news media and share your story 
  17. Share our Label Reading tutorial with new parents in your support groups 
  18. Learn and share new cooking tips in our Cooking and Nutrition pages
  19. Link to a new resource 
  20. Read and share “How to Help an Family Today” 
  21. Listen to the Recording: "Advocating for your Child in the Healthcare System” A joint webinar from ThriveRx and The FPIESFoundation 
  22. Print and share the “FPIES-at-a-glance Awareness rack card
  23. Wear your favorite FPIES awareness gear to spread awareness FPIES. 
  24. Design an FPIES awareness poster with your kids to share with their pediatrician's office, take  picture, and share it with us! Kids in Action
  25. Talk to a parents' group about your family's experience with FPIES.               
  26. Coordinate an Awareness Event!
  27. Host a Fundraiser Event!
  28. Connect to research on the Global FPIES Patient Registry 
  29. Learn updates to the research through Medical Journal Articles 
  30. Support our mission of providing education, support and advocacy to families and medical providers and donate today. 
  31. Follow our Website, Facebook, Blog, and Twitter for ongoing updates throughout the month!