Someone's In the Kitchen with FPIES: Animal Cookies/Crackers

Involving kids in baking safe treats
is a great way to encourage
a positive relationship with food.

One of the things that I find I struggle with as an FPIES mom is making food fun for my kids. My youngest can eat very few packaged foods, and so anything fun he gets has to come from me. I try to find things both he and my oldest (now FPIES free!) can both enjoy while still not spending ALL my time in the kitchen.

I’ve long had a love-hate relationship with rolled and cut out cookies. Normally a (mostly) decent baker, I have always struggled with not ending up with various disasters when trying anything that involves cookie cutters and a rolling pin. However, I saw some plunger-style cookie cutters in the shape of zoo animals and I was smitten. I knew I had to have them, even before I had any idea what I would do for the dough.

 I came up with this recipe, adapted from these: http://www.isachandra.com/2008/11/chocolate-chip-cookies/, and fortunately, the plunger-style cookie cutters were a life saver. I’m never going back.

 Plunger-style cookie cutters are WONDERFUL

These cookies are tasty, fun for my boys, and not entirely unhealthy for a treat. That’s a win in my book!

Animal Cookies:

Ingredients

1/3 cup olive oil

½ cup turbinado sugar

¼ cup rice milk

1 tsp vanilla

1 ½ cups all purpose flour

½ cup whole wheat flour

½ tsp salt

½ tsp baking soda

• In a medium bowl add oil, sugar, milk, and vanilla. Whisk together vigorously until mostly smooth.
• Add flours, salt, and baking soda and mix together.
• Chill dough for an hour.
  
• Preheat oven to 350°. Either grease a cookie sheet (can be done with your safe oil) or cover in parchment paper.
• Working in batches, roll out dough on a lightly floured surface to about a quarter of an inch thick and cut out shapes, then transfer to prepared cookie sheet.
• For extra definition, place cookie sheet with cookies in the fridge for about ten minutes.
• Bake for 8-12 minutes, depending on how big your cookies are, or until the tops are lightly browned.

A zoo's worth of animal crackers!

Recipe notes:

*You can use any safe oil, sugar, or milk.

*If vanilla isn’t a safe, they’re still ok without it.

*I have not tried this with alternative flours.

*These also make great graham-style crackers, just cut out square or rectangular shapes with a knife, and then prick a couple of times with a fork.

*The dough may be a little difficult to work with. If you're having trouble mixing it all together, use your hands!

This guest blog post written by Janie Dullard. Janie lives in Pearland, Texas with her husband and two children, both diagnosed with FPIES as infants, though her oldest has now outgrown it. She works as a freelance editor and has written a children's book, available here: https://www.amazon.com/Elephants-Tour-Yellow-Umbrella-Company/dp/0990799522/ . Her days are spent chasing after her two preschool-aged children, working, and concocting strange FPIES-friendly foods that her children will sometimes even eat.

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 anoriginal recipe and submit it to us viacontact@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, contacta.lefew@thefpiesfoundation.org today!

Raising FPIES awareness on The Mighty

A diagnosis of FPIES can be life-altering.  So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible.  

With over 150 million readers and thousands of contributors, The Mighty has been building a community of online rare disease support.  They “publish real stories by real people facing real challenges”.   They have created a safe platform for rare disease community members and organizations to connect with others, share their stories while raising awareness and support for rare diseases as a whole.  Together we are strong. 

The Mighty has given us the opportunity to share your experiences in stories such as:

33 Things Parents Do When They Have a Child With FPIES

19 Secrets Families With FPIES Wish Others Knew 

We are proud to be among the over 200 rare disease non-profit organizations that support and partner with The Mighty. We will continue to bring additional awareness stories in the future. 

If you would like to contribute a story, please visit https://themighty.com/submit-a-story/

Power of the PIN

In 2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform company.  Last year, Patient Crossroads underwent a rebranding to become AltaVoice.  Through Altavoice we were introduced to the Power of the Patients Insights Network (PIN) which enables us to further amplify the voice of children and families living with FPIES to help researchers and potential drug developers find better treatments, faster.

What is AltaVoice?

AltaVoice, formally Patient Crossroads, is a patient-centered data company that optimizes the search for better treatments for diseases.  They build and host Patient Insights Networks (PINs). PINs are ideal for collecting, curating and sharing patient and clinician reported health data. Altavoice works with drug developers, advocacy organizations, like The FPIES Foundation, and academic researchers, uniting them with patients to help improve lives.

What is a PIN?

A PIN stands for Patients Insights Network.  An AltaVoice PIN is more powerful than a traditional registry. It is an interactive, online platform for surveying patients, uploading medical records, tracking health outcomes and sharing de-identified disease data. Additionally, unlike typical clinician-driven registries, PINs are patient powered. The AltaVoice PINs make it easy for families to share their child’s experience, contribute medical data and maintain their privacy while being connected to the latest research, treatment and disease education opportunities.

Sharing Data & Improving Care

The AltaVoice PIN model was built with patients at the center, in control of their data. They believe strongly that advances are made faster when data collection is standardized and advocacy groups, such as ours, include the data in a global network, among other rare diseases that may share commonalities.

We share AltaVoices goals to encourage the sharing of de-identified data and studying findings to help patients learn how others manage similar health challenges. Sharing data also helps quantify the patient journey and build a stronger case for improving care.

Your Privacy

AltaVoice remains passionate about using their expertise to save time, lower costs and improve patients’ lives in a protected environment. Protecting patient data while providing broad access to health information is the cornerstone of their system design. AltaVoice rigorously manages and operates all systems to comply with HIPAA, FISMA and data and patient protection laws.

Inherited & Rare Diseases

AltaVoice has also partnered with Invitae to create new offerings to advance research and access to care for patient with inherited and rare diseases.  While FPIES is not known to be a genetic condition, this merger enables our registry to be open to collecting the data needed for investigating FPIES as a genetic condition.  We are excited for these possibilities under our free FPIES Patient Registry. 

The AltaVoice PIN provide patients, The FPIES Foundation, and research groups with a platform where they direct how, when, and with whom to share their clinical, and in the future, genetic, information to benefit their children and families and further research efforts for FPIES.

Learn more about AltaVoice here: https://www.altavoice.com/solutions/solutions-for-patients-and-families

Register on the FPIES Registry here: www.fpiesregistry.com