Sunday, June 14, 2015

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

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!

Monday, June 8, 2015

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!

Wednesday, May 27, 2015

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.