Someone's in the Kitchen with FPIES: Crunchy Chocolate Chip Cookies!

Contains: FIVE ingredients: millet, water, safflower oil, pure maple syrup, and mini-chocolate chips.

Does NOT contain: egg, baking soda, baking powder

Inspired by a recipe from a fellow FPIES mom (and her blog), and her recipe for Merry Muffins, I learned to create several baked treats from just this ONE recipe!  I took the ingredients and substituted my son’s safe ingredients and then used these to make not only the muffins safe for my son,  but found that  I could vary these few ingredients and make other things such as pancakes, crackers, and cookies.

A valuable thing that FPIES has taught me is how to be more creative (and brave!) with my baking.   One of these lessons is how to take a recipe and scale it down to a small amount of ingredients so that when I experimented, if it was a flop, I wasn’t losing as much of the high-cost/harder to obtain “safe” foods. 

During one of my experiments with varying ingredients, and after we found a safe chocolate chip, I created a chocolate chip cookie that my son loves, perhaps by sharing my recipe, it can help you come up with something  that can become a favorite for you too! 

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!

Written by Joy Meyer, Co-Director and mom to a child with FPIES, Post approved by the  Medical Advisory and Executive Boards of The FPIES Foundation 

Global Day Impact in 2015

Thank you so much for your impact on making Global FPIES Day such a success! Our education, support and awareness efforts, coupled with the impact of your participation, reached a multitude of individuals affected by FPIES, their families, and the healthcare providers who serve them.  

Together, we:

• Provided hope.  
• Illustrated what an acute FPIES reaction looks like, in the stages of dehydration and shock.  
• Increased awareness with an “Overview of FPIES” for families, pediatric professionals, caregivers, teachers, and our communities.  
• Explored ways to communicate with our children regarding special food needs and how we can Redefine Differences. 
• Discussed strategies to nourish children affected by FPIES and their families, utilizing tools for coping and managing the stress of living with FPIES.  
• Prepared families with checklists for school, travel, recipe building and more! 
• Empowered families in the kitchen to learn more about “Cooking with Food Allergies.” 
• Shared your “Voice of Education” in our “Global Day” social media album  
• Inspired more families to share their stories and their experiences with this life-altering diagnosis. 

We ended the month of awareness with being honored with one of the first Top-Rated Awards of 2015 from GreatNonprofits! We were so touched and appreciative to read all of your reviews!  The reviews by volunteers, families, supporters and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community, recognition we are so very honored to receive.**

**While the Top-Rated Awards ran through the end of October, The Foundation was part of the inaugural group to qualify for the year. In addition, we’ve been added to GreatNonprofits #GivingTuesday Guide—an interactive guide to top nonprofits throughout the years. Look for this near the holidays.

Together, we were all the Voice in raising awareness, while fostering advocacy, education and support for FPIES this Global FPIES Day. Thank you for connecting with us, across barriers of land, ocean and language, in order to better the lives of those affected by FPIES, worldwide.

As we head into the Holiday season, it is our hope that awareness and education highlighted during Global Day can continue to start conversations, enable inclusion, and help keep our little ones safe and thriving through the challenges of this year and those to come. 

This post was written by the Executive Board of The FPIES Foundation 

FPIES Trends and Insights from the Patient Registry

FPIES Trends and Insights: 
Caregiver/Patient Reported Data from the Global Patient Registry 
By Hilary Lagerwey 

For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis.

First of all, we want to say a big thank you to those who have already filled out the survey with valuable information!  There are several good studies out there describing what FPIES looks like, and our goal is to supplement that research with up to date information gathered from an even larger pool of families that we are able to reach using this tool. We hope that this information proves immediately valuable to families and doctors who are managing this diagnosis on a daily basis. We also hope to provide some insights to researchers that might prompt further study.

Anyone who fills out the survey has access to all of the cumulative data so feel free to browse and analyze for yourself, but today, in honor of Global FPIES Day this month (Oct.14th!) we thought we would share some of the insights we’ve gleaned so far. We recognize that since we are collecting data by voluntary responses some of our information may look skewed as compared to a more random sample; however we know that these results are important to share and that they represent a significant portion of FPIES families.

If you haven’t filled out the survey yet, please do so! The more data we have the more we can learn. The more information we can give to doctors and researchers, the more we can advance research to benefit all families living with FPIES.  Here is a look at what our data says about some frequently asked questions:

Do FPIES symptoms typically appear with the introduction of solid foods and formula or is it possible to react through breast milk?

57.4% of survey respondents reported exclusive breastfeeding when symptoms began.

Is FPIES typically outgrown in early childhood?

Out of patients 3 or older in our survey data, 15.8% report outgrowing acute reactions. 1 patient reported is under 3 and reported already outgrowing acute reactions. Several patients well into their elementary school years state that they still have not outgrown acute reactions.

*Also out of patients 3 or older, 15.8% report outgrowing chronic reactions.

50% of those who report outgrowing acute reactions report still experiencing GI symptoms with previously reactive foods.

Do most kids only react to one or a few foods?

Out of those who report projectile vomiting with reactions, 51.9% stated this occurs with only 1 or 2 triggers vs. 48.1% who stated they experience projectile vomiting with more than 2 triggers.

26.9 report projectile vomiting with 5 or more triggers.

What symptoms are common with reactions?

81.3% report projectile vomiting

65.6% report diarrhea

48.4% report visible and/or occult blood with stool

Thank you to FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey for compiling this survey data. 

Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice 

Be the VOICE of Education for those living with Food Protein-Induced Enterocolitis Syndrome on Global FPIES Day!

According to the FPIES Global Patient Registry, caregivers/patients report an average of 1-5 months, with several families taking up to a year, for a child to receive an FPIES diagnosis.  A year to diagnosis. A year of experiencing symptoms and reactions. A year looking for answers and support. The FPIES Foundation is working to change that.  We give more children, affected individuals, and their families help and support when we educate people everyday about the diagnosis.

This is where you come in. 

As we celebrate Global FPIES Day on Wednesday October 14^th; we want you to talk to your family, friends, caregivers, healthcare providers, daycare's, schools, and more about FPIES. Teach them the about the diagnosis. Don't know how to start the conversation? We can help! Don’t know what to share?  We can help!

And then, join us at www.fpiesday.com for our Global Day Virtual Online Interactive Community Event and find new resources and support for you and for you to share!

Also, don’t forget to register and complete the surveys on the FPIES Global Patient Registry! This is your chance to make an impact on the FPIES diagnosis. What better time to start than on Global FPIES Day? 

If you love our work then tell the world! It’s easy and only takes 3 minutes! Go here to get started! http://greatnonprofits.org/reviews/write/the-fpies-foundation

This post was written by the Executive Board of The FPIES Foundation 

What is an ICD-10 Code?

The FPIES Foundation is excited that the Centers for Disease Control (CDC) now recognizes Food Protein-Induced Enterocolitis Syndrome (FPIES), and has appointed it with diagnostic code K52.21, among allergic digestive diseases. This is a step that has the building blocks to make diagnosis and medical/formula coverage easier for a lot of children and their families and was supported by The FPIES Foundation. We thank Dr.Anna Nowak-Wegryzn (Founding member of The FPIES Foundation Medical Advisory Board member) and I-FPIES for their role in this initiative.

What is an ICD-10 code and what does it mean?  ICD is an acronym that stands for International Classification of Disease and the #10 is because this is the 10^th revision.  This ever growing and changing list is maintained by the World HealthOrganization (WHO).  WHO defines ICD as, “. . .The standard diagnostic tool for epidemiology, health management and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems”.

Simply stated, ICD codes are utilized medically for precise tracking and quicker analyzing of a diagnosis, under its specific code. For FPIES, this can help with research to study patterns of the diagnosis, track complications, and treatment outcomes.  ICD codes are utilized in health services looking for patterns in such things as quality and access of care, as well as quality of life. Insurance companies also utilize this code in classification for payments of services and coverage of prescriptions related to the diagnosis. For FPIES, this can help insurance companies in deciding to include formula prescriptions to be paid and/or reimbursed. (***Please note, it is not an automatic coverage by insurance or government medical aid). The ICD coding is an important piece of health care operations which includes health services and insurance reimbursements, in addition to medical research.

The CDC has granted FPIES a specific code, K52-21: 

• K tells us the chapter of the classification it is in: “Diseases of the Gastrointestinal System”
• 52 is where it fits along this category. 52 being “Other non-infective gastroenteritis and colitis” and,
• .2 is “Allergic and dietetic gastroenteritis and colitis” and finally,
• 1 added gives it its specific Food Protein-Induced Enterocolitis classification. 

In the future, there could be additional numbers to further define sub-classes within this diagnosis code. 

Additional codes to include the other known allergic/food protein induced gastrointestinal disorders will be added as well. 

Establishment of an ICD code for FPIES is an important step in further defining this diagnosis and increasing its visibility to enable increased support and care for children, and their families, living with this diagnosis.  We recognize there is much more work to be done to assure all children along the spectrum of this diagnosis have this same access to adequate support and care and look forward to this continued work in collaboration with our medical advisory board and this community.  

This post was written by the Executive Board of The FPIES Foundation 

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Building FPIES Awareness through Fundraising and Events

Over the last year we have been inspired by the impact of your unique talents and hard work as you continue building awareness to FPIES.   As we approach our 2^nd annual Global Day, we wish to share some of these events with everyone, in hopes to inspire you, that you too can make a difference.  “Our shoes may be small but our steps will be BIG!”

FPIES families have always been creative, including in how they raise awareness and fund-raise! We have had several moms using  Jamberry fundraisers, and even a couple of these moms designed the nail wraps themselves to feature FPIES awareness art. Awareness from fingers to toes! Other moms have designed T-shirts and other awareness gear to raise funds to further FPIES education and awareness. Their creativity has helped fund programs to educate medical professionals about FPIES. We want to give special shout-outs to Jessie Ipson Richens, Kate Hutchens, Crystal Lentz, Brandi of Glam Tots, Rosie's Creations, and Half Pint Threads!

Restaurants have joined in the cause, sponsoring family nights and awareness days where they donate a certain percentage of sales to The FPIES Foundation. We were touched to see photos from Jersey Mike's Subs-- a visual reminder of how communities are really joining in the cause and reaching out to support  FPIES awareness. The families initiating these fundraisers and the restaurants partnering in the cause have helped to fund programs providing resources and support to families worldwide. Special recognition for Luca's family for all of their support!

In every fundraiser and in every awareness event, families put their own unique stamp on the day.  Just as each child is unique, each family-organized event has its own special style. The Fangman Family, for instance, raises awareness at Drag Races and Mud Runs!  Samantha Fangman shares, “Our daughter, Josie, has FPIES. My husband had decals made for his race-car with the FPIES logo. We have brochures printed that we hand out at all our races. We were amazed how many people came up and asked us what FPIES and The FPIES Foundation was at our first race. We’ve handed out many more brochures than we anticipated and are thrilled about it!!! We are doing what we can to get the word out!!“

If you are thinking about starting your own awareness event or fundraiser for the FPIES Foundation, we hope that you have found inspiration in the stories of the families highlighted above--- we certainly are inspired by all of them, and all of you, everyday as we continue working to fulfill the FPIES Foundation's mission of education, support and advocacy for all those affected by FPIES, worldwide. 

This post was written by the Executive Board of The FPIES Foundation 

August 2014- August 2015: Our Fourth Year in Review

Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories--  we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in the face of this diagnosis and learning to self-advocate. The hallmark of these past four years has clearly been connection, and here at the FPIES Foundation, we are so honored to be a part of your family's journey. As we move into our fifth year together, we strive to maintain our connections and to provide all members of this remarkable community with even more tools, resources and sources of empowerment.

So, what have we been up to since last August? We focused on:

Empowerment

• Partnering with ThriveRx to bring families the webinar “Advocating for your Child in the healthcare system”,
• Providing Helpful Tools to start the conversation about FPIES, and advocate for greater awareness
• Making raising awareness easy with our expanding page of printable fliers
• Helping families to be prepared with a few quick and simple ways to share awareness, “31 ways in 31 days” for Food Allergy Awareness Month
• Highlighting what “FPIES in a word” means for families living with the diagnosis

• Spreading the awareness on the first-ever Global FPIES Day on Oct. 14, 2014
• Sharing info graphics created just for spreading awareness via social media or in print FPIES: Simple Words, Complex Diagnosis
• Sharing tools for FPIES management:

• Single-page action plan:  Download, print, and connect with your child’s doctor today to work out the details. 
• How to identify shock, our ‎FPIES Medical experts break down the critical symptoms you need to look for. 
• Emergency Care! From action plans to ER letters, our website has everything you need in one convenient location.
• Nutritional Resources for Families, a newly released webpage to support nutritional management
• Nutritional Resources for Professionals, a newly released webpage designed specifically for nutrition professionals who support children affected by FPIES and their families

• Expanding tools for daily  life with FPIES:
• “Someone's in the Kitchen with ‪‎FPIES”  offers a go-to resource for recipes and cooking tips.
  
• Share your family favorites!, families help families  by sharing what products they use regularly or have discovered!
• Food Journals-- “one size fits all” does not always apply to FPIES. A mom shared one approach, that caught the attention of her doctors, in this blog 

Building Global Awareness and Resources by:

• Proclaiming October 14th to be recognized as Global FPIES Day.
  
• Joining forces with Rare Diseases Community and Global Genes  for amazing resources to help FPIES families for Rare Disease Day and every day!
• Providing informational and awareness packets, available in PDF format to view, download and print, on the new Global FPIES Day page!
• Translating FPIES– SEIPA Información en español! A global need for FPIES awareness is clear. These community awareness cards, translated into Spanish, expand the reach of FPIES education. Download in English and en Español from our awareness flyer bulletin board!
  
• Surveying families about the gastrointestinal impact of FPIES through the FPIES Global Registry.
• Supporting the growth of FPIES advocacy organizations, worldwide 

Education Initiatives:

• Providing families with FPIES information at community events, such as Boston's Franklin Park Zoo, Boston FARE Walk 2014, and FASGMHN Food Allergy Resource Fair
• Fostering online awareness events, such as our “Be the Voice,” “FPIES in a Word,” and the “FPIES Recipe Challenge” campaigns
• Sending FPIES awareness packets to families for ‎FPIES resources at their fingertips (contact us today for your packet!) 

• Participation in Several Awareness Days throughout the year, such as:


• Feeding Tube Awareness Week 
• 'We are #‎FPIES. We are the #‎1in10' photo album online campaign for Rare Disease Day 2015; putting a face on the 1 in 10 people worldwide that suffer from some type of Rare Disease. 
• Food Allergy Awareness Week 2015. We participated in several awareness activities including a photo album, inspired by our community, that shares pictures and corresponding words illustrating life with Food Protein Induced Enterocolitis Syndrome. .
• May 4^th was recognized in the US as a day during Food Allergy Action Month for raising ‎FPIES awareness.  Families were encouraged to raise awareness and get the conversation started with their social media accounts-- #‎AskMeAboutFPIES
• In March, for National Nutrition Month, we asked Bailey
  
  Koch, RD, CSP, LD of our Medical Advisory Board to come up with some essential nutrition tips and recommendations geared towards FPIES families.
• Debuting at Community and Scientific Events such as: 
• The Annual NASPGHAN conference, a conference for Pediatric GI health professionals that includes Physicians, Physicians Assistants, Nurses and Dietitians, providing FPIES materials to these health practitioners vital to our children’s medical care.
  


• The FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families,  FPIES Foundation Panel Member, Victoria Warren, Emceed, and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr.Shreffler were in attendance. A large meet-up of FPIES Families was celebrated!

As we look to another year ahead, we are so grateful for how much growth we have seen in the FPIES community over the years. We are humbled that all of you have shared in this journey and will hopefully remain actively involved in the years to come. It is because of your support that The FPIES Foundation has been honored, yet again, with a prestigious 2014 Top-Rated Award by GreatNonprofits. We are also proud to have been featured on Rare Disease Day recap from our friends at Global Genes. We would like to send a big thank you to all our families who made sure FPIES had a strong voice on this international day of awareness, and all other days this part year!

In addition to our incredible community of FPIES families, we continue to be amazed at the tireless efforts of our Medical Advisory Board in their advocacy for FPIES and food allergies, not only among families but also among their colleagues.

• Last October, MAB member and Registered Dietitian Bailey Koch spoke at the Pediatric Nutrition Conference of NASPGHAN, educating other professionals about FPIES.
• The Western Society for Allergy, Asthma and Immunology Conference featured a discussion on FPIES, led by Dr. Glenn Furuta of our Medical Advisory Board, looking at the goals of the gastroenterologist in regards to FPIES care.
• Dr. J. Andrew Bird of our Medical Advisory Board details the newly released FPIES survey discussed at the recent AAAAI meeting. The discussion focuses on gaps in the diagnosis and management of FPIES. 
• ‪FPIES Foundation Medical Adviser Dr. Qian Yuan, a Pediatric Gastroenterologist with Mass General Hospital, released a new children's book: “Macaroni Isn't the Same Without Cheese.” It's written to help school age children understand EoE - a message that applies to kids living with FPIES, too.

Families, supportive medical professionals, and the amazingly strong infants and children we all support continue to fuel the passion of The FPIES Foundation, every day, every year. Together, small shoes CAN take big steps towards awareness, support and advocacy.

If you would like to learn more about our activities, be sure to check out our annual reports and current events pages! If you would like to learn how you can make a greater impact, contact us today for information about volunteering and special partnerships. Join us as we continue to connect, support and empower for many years to come.

This post was written by the Executive Board of The FPIES Foundation 

Allergy Cookie and the Teal Pumpkin Project: UPDATE

July 2015 Update: A message from Tiffany Rogers of Allergy Cookie: “I regret to inform you that you that due to a number of factors, including recent changes in the terms and dependability of our suppliers, we have decided not to sell Teal Pumpkins for our Walk Team or on our website this year. The good news is that FARE’s Teal Pumpkin Project campaign is still alive and well and the food allergy community expects to continue to see a growth in support of it this year!  We are excited that Allergy Cookie will be helping to promote the Teal Pumpkin Project campaign and bring more awareness to food allergies, as well as encourage more people to use non-food treats to include ALL children.  Even though we won’t be selling pumpkins, my family still plans to reach out in our local community and encourage our friends, family, and neighbors to get involved.”

Tiffany Rogers founded a company called Allergy Cookie and they are offering specially designed Teal Pumpkins filled with non-food treats to handout on Halloween. They even have a special pumpkin available for FPIES - Food Protein Induced Enterocolitis Syndrome. 

Tiffany is the mother of a 3 year old child with severe multiple food allergies. She and her husband also suffer food in tolerances. Her son's birthday just so happens to be Halloween and when he turned 3 she didn't want to think about explaining to him why on his birthday he wouldn't be able to have any of the treats from trick-or-treating. That's when she heard about FARE's 'Teal Pumpkin Project.' 

Families participate in the 'Teal Pumpkin Project' by handing out non-food treats on Halloween and identifying their house as allergy-friendly by painting a pumpkin teal. 

'It was such a blessing,' Rogers says, 'to have my son receive treats while trick-or-treating on Halloween night he could keep.' 

Rogers points out food allergies are not one size fits all and that's where Allergy Cookie's Teal Pumpkin products come in. In June, they have been offering the pumpkins as part of a special fundraiser competition with proceeds benefiting FARE and a variety of different food allergy organizations, including the FPIES Foundation. 

The hope is to raise research money and awareness. Rogers asks those without allergies to participate in the 'Teal Pumpkin Project' and think about what it could mean for a child, like her son, on Halloween. 

For more information on Allergy Cookie or their Teal Pumpkin Fundraiser, and how you can order your Teal Pumpkin for Halloween, please visit their page http://www.allergycookie.com/tealpumpkinfundraiser/

This post was written by the Executive Board of The FPIES Foundation 

A Professional Spotlight on FPIES: Foundation Medical Advisory Board Member, Dr. J.Andrew Bird, Participates in FPIES Discussions at AAAAI

A Professional Spotlight on FPIES:

Foundation Medical Advisory Board Member, Dr. J.Andrew Bird, Participates in FPIES Discussions at AAAAI

This article references:“Trends in ProviderManagement of Patients with Food Protein Induced Enterocolitis Syndrome” 

Dr. Bird, tell us about this year’s annual meeting-- we were thrilled to hear about your presentation there! Could you share with us more about it?

The American Academy of Allergy, Asthma and Immunology (AAAAI) held its annual meeting in Houston, Texas this past February.  During the meeting, data was presented from a recent survey distributed to the AAAAI membership aimed at understanding allergists’ current practices and potential knowledge gaps in regards to diagnosis and management of FPIES.  As a member of the Adverse Reactions to Food Committee, I was asked to assist Drs. Matthew Greenhawt at the University of Michigan and Anna Nowak-Wegrzyn from the Icahn School of Medicine at Mount Sinai in New York in developing and distributing the survey.    

What did this survey show?

• Four hundred seventy allergists responded to the survey (10.8%) of AAAAI members.  The majority (88%) were from the U.S. and most were in private practice (61%). 

• Milk/soy FPIES was managed by 74% of respondents, and approximately 60% have managed solid food FPIES. 

• When given a clinical scenario 80% of respondents were able to correctly identify FPIES. 

• Knowledge gaps were found in the ability to correctly manage FPIES, in particular with choice of appropriate formula for a child with either cow’s milk or soy FPIES. 

• Elemental formula was identified as an appropriate substitute by only 64% for cow’s milk FPIES patients and 68% for soy FPIES patients. 

• Additional variability in management was seen in consensus amongst allergists regarding whether diagnostic testing was necessary or useful and,

• Overall, oral food challenges are underutilized for reintroduction of triggering foods.

What would you say are the important conclusions from this survey for those living with FPIES?

Results from the survey provided firm data regarding needs to be addressed in the allergy community in order to take better care of children with FPIES.  Formal guidelines for care and management of children with FPIES are currently being developed and will assist with standardization of practices amongst physicians caring for children with FPIES.

J. Andrew Bird, MD is Board-Certified in Allergy and Immunology.  Dr.Bird is an Assistant Professor of Pediatrics of the Food Allergy Center at Children’s Medical Center Dallas, Texas.

Thank you, Dr. Bird! For future professional spotlights on FPIES, be sure to subscribe to The FPIES Foundation's blog!

This post was written by the Executive Board of The FPIES Foundation 

FPIES Tools: Food Journal's for Food Allergies!

Whether you are nursing, starting solid foods with your child, or simply looking for a way to learn more about your child's responses to foods in his/her diet, a food journal can be a helpful tool in figuring out safe vs. unsafe foods for your little one.

When their little ones initially receive an FPIES diagnosis, many parents find journaling helpful for learning what their little one’s “baseline” or “norm” looks like. Charting their little ones' responses to foods, both positive and negative, can be useful in sorting out and identifying potential reaction symptoms, if and when they occur.

On our website, we provide you with some helpful sample food journals. Whether it is structured, open ended, a combination of both, or even a more detailed “hour by hour” food and symptom journal, you can find examples and blank templates on this helpful page.

Today, we’d like to feature a specific type of journal from a fellow FPIES mom! Krissandra Cox recently shared a colorful picture of her version of a food journal.  It is color coded for types of symptoms observed, and it is graphed to show frequency of those observations. Krissandra shared this with us about her journal, “I created it after asking myself what her doctors seemed to really care about: what food did she try, and how did she react? They never asked me for specific dates, or at what time of day I fed her something, or how long the trial lasted; that information was useful to ME, but not [necessarily as much] to her doctors. In the end, the only important factors [they needed] were Food:Reaction. So, I made the chart using a sliding scale of symptoms that someone could easily look at and see a pattern. The worst offenders fall into the orange-red zone, which means a re-trial would happen much later for those foods. Her allergist and GI loved it and made a copy!” This journal style intends to give a “snap shot” of how each trial may be going.  It’s no surprise that her doctors-- and other FPIES parents!-- appreciate it!  

In the true FPIES community fashion of families helping families, we were thrilled to see another mom, Robyn Stojakovich, generously offering to put this template into a printable/editable format for others to utilize and benefit from as well! You can download your copy here, save it and print it, or bookmark it online for a quick reference at your fingertips! 

No matter what style of food journal that you use, you may want to consider taking it to your child’s appointments! Some doctors find it helpful to view the food journal periodically to track symptoms, to check on the child’s diet, or for other reasons. The journal offers them a window into what you as the caregiver are observing each day.

Can't quite find the right fit from the pre-made templates? Food journals can be just as unique as our little ones! In case you would like to create your own original version, here are some tips to get you started: 

Remember– whether it is written in a spiral notebook or with a computer program, the key is making it work for YOU so that it can be best optimized as another tool for the toolbox.

Need more tools for your toolbox? For more tools and resources for day to day FPIES management, be sure to check out The FPIES Foundation's Toolbox today!

This post was written by the Executive Board of The FPIES Foundation 

Mangos for Max, a child’s food allergy book

Mangos for Max,

A child’s food allergy book by Dr. Jessica St. Louis

Dr. Jessica St. Louis had the idea to write “Mangos for Max” when her oldest son with multiple food allergies was entering preschool. She was looking for a book that would introduce food allergies to preschoolers without overwhelming the young audience; and so Mangos for Max was written.  It introduces food allergies in a way to teach to others but also benefit the child with food allergies themselves, including FPIES.  

Families living with FPIES have been recommending this book, and we are honored to have the opportunity to ‘sit down’ with Dr. St.Louis and let her tell us a little more about her book.

What is “Mangos for Max” about?

Mangos for Max follows the adventures of Max, a young school-age monkey, as he lives life, makes friends, and eats mangos instead of bananas due to his allergy.  Full of bright and whimsical illustrations, this book will enchant young readers as they watch young Max the monkey live it up, make friends, and have lots of fun along the way. Engaging and informative while remaining silly and playful, this delightful story has a message young readers will take to heart.

How is “Mangos for Max” different than other books about food allergies for kids?

I would have to say that "Mangos for Max" is an optimistic story which focuses on the positive outcome of when all children stay safe while eating in a group setting. I didn't want my book to focus on the allergen per se, I wanted the safety issue to be addressed followed by the story continuing with positive reinforcement. When my oldest son was entering preschool, I wanted to find a book that I could read to his class that would describe food allergies without all of the details of what can happen after food exposure. I felt some stories could be a little overwhelming for the little ones. So I was on the hunt for a story to gently introduce the topic of food allergies, which could benefit not only the food allergic child, but the classmates as well. Since, I couldn’t find exactly what I wanted to read to a younger audience, I decided to write it myself.

Does the book allow for teaching of non-IgE allergies?/What do you think would be most beneficial for a child with FPIES in your book?

I wrote Mangos for Max in a way that it could include all children.   Since most children can relate to monkeys eating bananas I focused on that particular allergen.  I did not want to pick from the top 8 allergens, as I felt children would fixate on the fact it was such a common allergen making it less inconclusive.  However, since bananas happen to be a common FPIES trigger, I have heard many responses saying their FPIES child could relate to this.

How have kids responded to this book? Have you heard from other FPIES families that found this book helpful?

I have heard from a lot of different families with food sensitivities, anaphylaxis, FPIES, and even from children on specific diets due to other medical conditions outside of allergies.  What I have found the most surprising is the positive response I have received from children who do not have food allergies.  I have met many while doing book readings, as I usually read to a classroom.  Children who have friends with food allergies can be extremely supportive and I love seeing the enthusiastic response they have shown.  

Dr. Jessica St. Louis is the mother of children with multiple food allergies who enjoys reading to preschools, elementary schools, and small groups to advocate food allergy awareness and education.  She lives in Austin, TX with her husband and two boys where they can often be seen enjoying family bicycle rides.  For more on Mango’s for Max website. 

This post was written by the Executive Board of The FPIES Foundation