Monday, June 29, 2015

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

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

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!

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

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!

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