An Interview with: Stephanie Pysher, MS, RD, RYT Food Allergy Dietitian Solutions LLC
We recently learned of a FPIES workbook created by a mom of a child with FPIES. Since resources created by families of those affected by FPIES are the best kind, we invited the creator to tell us more about this new resource!
Please tell us a little about yourself.
Hello Fellow FPIES Families! I am a Registered Dietitian with a Master’s Degree in Nutrition, a Registered Yoga Teacher, and Mother of two wonderful children. After many years of providing nutrition education to patients, college students, and health care professionals, I received my greatest challenge yet! My son (now 3 years old) was diagnosed with FPIES at age 6 months and my perspective on nutrition would never be the same again. Caring for our son with FPIES has turned our family life upside down in many ways. Grocery shopping and meal preparation are more time consuming and require more creativity. My husband and I are rethinking the way that we eat and learning how to cook with new “safe” ingredients in ways the entire family can enjoy. I thank God every day for the wealth of nutrition knowledge that I have as a Dietitian as well as for the life changing opportunity to care for my son. My hope is to use that knowledge and experience to help other families managing FPIES and food allergies.
What inspired your FPIES Workbook for Parents & Caregivers?
For approximately fourteen months, I was the primary caregiver for my son with FPIES. Then, I had to go on travel for a long weekend and needed to provide my husband with a list of just about everything FPIES related so he could take care of our two children (youngest with FPIES) while I was away. I was overwhelmed with stress because I had so many lists (list of reactions, list of safe foods, emergency plan, doctor contact information, formula instructions, etc.) and all of these lists were located in different places (hand written, on the computer, on my phone, etc.). I realized that I had to get organized since I am not the only caregiver for my son. This “aha!” moment was my inspiration for creating the FPIES Workbook for Parents & Caregivers to help other families managing FPIES to get organized and find a sense of calm in the chaos.
Tell us about the workbook.
This spiral-bound Workbook was created specifically for families managing FPIES, to help parents and caregivers stay organized and keep track of everything in one place! The FPIES Workbook for Parents & Caregivers is conveniently sized at 5”x 8” making it easy to transport and share with others (such as caregivers, teachers, and healthcare providers), allowing for seamless communication of each child’s health needs. My vision is for the Workbook to be a must have tool in everyone’s FPIES “toolbox” providing the necessary journal pages to keep track of: Emergency Contacts, Food & Symptom Logs, FPIES Reaction Logs, Other Reaction Logs (such as IgE Allergies, Medications, Supplements), Hospital Food Challenge Notes, Safe Lists (for Foods, Formulas, Medications, Supplements, Breastfeeding Mothers, and Art Supplies), Preferred Grocery Stores, Safe Restaurants, Doctor Visit Notes, Travel Planning, Safety Checklists, Healthy Coping, and Favorite Recipes. In addition, the Workbook includes many FPIES focused resources utilizing both evidence-based scientific research as well as my personal experience as a seasoned FPIES Mom and Registered Dietitian.
How does this differ from an online version?
At this time, the FPIES Workbook for Parents & Caregivers is only available as a 5”x 8” spiral-bound printed journal style book, allowing it to easily be transported and shared among caregivers. However, I am considering exploring digital options for the future!
Do you recommend this for both new food allergy parents and ‘veteran’ food allergy parents?
Yes, most definitely! Families who are new to FPIES will benefit from the numerous FPIES resources as well as the journal space to log food trials, acute and chronic reactions, emergency contacts, doctor visit notes, mom’s safes while breastfeeding (if applicable), safe formula (if applicable), the healthy coping journal, just to name a few. “Veteran” FPIES families will benefit from the numerous safe lists (such as safe foods, safe medications and supplements, safe restaurants, safe art supplies, etc.), hospital food challenge notes, safety plans for childcare/school as well as social events, travel and vacation planning, favorite recipes, and so much more. No matter where a family is on their individual FPIES Journey, there is something in the Workbook for everyone!
As the creator, and parent of a child with FPIES, do you have recommendations/advice for keeping it organized and what to keep in the workbook?
LOG EVERYTHING and take the Workbook with you EVERYWHERE! If you happen to take notes on your phone, be sure to update the Workbook later so it is always ready and available to share with your child’s caregivers, school teachers, and healthcare providers. Definitely take advantage of the Healthy Coping Journal included in the Workbook, as self-care is so important on the FPIES journey.
The Workbook provides many FPIES focused resources such as an FPIES Checklist, Using Growth Charts, Formula Resources, Tips for Food Prep, Sample Meal Patterns, and FPIES Label Reading. Additionally, I’ve included “Using Your Workbook” pages that explain how best to use each section of the Workbook with example journal entries.
This interview was conducted by Joy Meyer, Co-Director of The FPIES Foundation and Stephanie Pysher, MS, RD, RYT Food Allergy Dietitian Solutions LLC, creator of The FPIES Workbook for Parents and Caregivers. Visit her website, Food Allergy Dietitian Solutions LLC, at https://foodallergydietitian.wixsite.com/foodallergydietitian to learn more. You can also connect with Stephanie via e-mail (firstname.lastname@example.org) if you have any questions regarding the FPIES Workbook for Parents & Caregivers.