Preparing for a Food Challenge

When navigating through the FPIES reality, one of the more regular activities is a food challenge. When we began introducing foods to our son, several challenges resulted in days worth of medical attention. Now, each and every food introduction we do (whether the food is a typical FPIES trigger or not), is conducted in the hospital as a monitored challenge.

Here is what I’ve learned to best prepare for each challenge:

To Do:

• Schedule a challenge when it is most convenient for you. Don’t try to squeeze it in between a work deadline and a holiday, or any other time frame that will add stress. Select a day that works for you and your family, even if it means pushing it out on the calendar a bit. The less additional stress, the better!

• Line up the help you need in case the challenge extends into the day (or days). Ask neighbors to be on-call in case your dog needs to be walked, invite a relative to stay with your other children, etc.

• Review the protocol for the particular challenge, and then go beyond the recommendations. It is standard for the hospital or clinic to provide guidelines on what to bring in terms of food. We adhere to these guidelines, and then also go above and beyond with our food preparation. Occasionally, our son will not ingest the recommended form of the food and we are thankful to have also packed options. For instance, the guidelines for egg was an egg powder packet that the hospital provided stirred into applesauce. This, perhaps not unsurprisingly, created a texture and consistency that was unappealing to our child. Instead, he ate the egg I scrambled that morning and brought in a Thermos. (He then failed the challenge, so perhaps I should have wished I wasn’t as prepared, but alas!)

To Wear:

• Don a plain cotton dress. This may seem very specific, and it is!  Here’s why. I have learned to wear a dress as it allows me to use the restroom quickly with a toddler in tow who may or may not be feeling well. I also learned to never wear a top with a zipper, buttons, or other adornment as my son often wants to sit on my lap and rest (as a challenge is a long time period), and with a plain top, he has a smooth surface to lean on. If his stomach hurts, I don’t want to add an annoying button against his cheek! And finally, my son has eczema (as some children with FPIES do) and 100% cotton is the best material against his sweet, sensitive skin. A simple cotton dress hits on all three lessons learned and is super comfortable for a long day for mama, to boot!

• For the food challenger, comfort is also key. I dress my son in loose clothing with sleeves that can easily accommodate an IV or tourniquet if needles must be used or a cuff if blood pressure must be taken. For bottoms, either shorts or sweatpants that have an elastic waist for both comfort and ease (now that we are officially potty-trained).

To Bring:

• A stroller. Even if you’re toddler typically refuses to sit in one, bring it. Challenges can be tiring and I am always grateful to have something that my son can sit in to rest. A stroller is also ideal to idle down the hallways looking at the beautiful and incredible art collection our hospital boasts.
• Small, engaging activities. We have challenged in multiple hospitals and each time, the sole means of entertainment is a movie. My toddler is not exactly a movie fanatic, so I collect little, mess-free toys and crafts for our challenges. Our favorites include:
• Reusable stickers so we can create scene after scene
• Small cars so we can push them all around our room
• Puzzles that are easy enough to complete but challenging enough to pass the time
• Neon markers and black construction paper so we can create works of art and then deliver to adoring fans at the nurses’ station
• Search books so we can find every last image 
• Growing capsules that turn into animals and other shaped sponges. Our last three challenges have all been in the same room which has a sink, as most clinic rooms do. We bring a couple of plastic cups that we fill with water from the sink, drop in the capsules, and watch them grow in the water. It definitely bides the time.

• Non-challenge food. If you are in the clinic for long periods of time, hunger will certainly set in and being hangry is not quite ideal. Bring plenty of safe foods for your little challenger and plenty of adult munchies for you.
• Cell phone charger. If you are like me, grandparents, spouses, and close friends will be texting for updates and you want to be sure to respond without worrying about the dreaded red battery once below 20 percent. 
• Overnight bag. My goal is obviously to never need it, but I bring it just in case. A pair of cotton pajamas for the challenger and the same for the parent, a toothbrush and toothpaste for you both, and comfortable outfits for a potential day 2 is all you need. I leave the bag in the trunk of the car, far enough away to not be thinking about an overnight stay but close enough to grab if we are admitted.
• A favorite lovey or blanket. Even if the challenge is a pass and all goes swimmingly, it is a long day and who couldn’t use a little extra bit of comfort?

May this post help you prepare and may all your challenges be a pass! 

This post was written and contributed by Margaret Hancock.  Margaret is a writer, a mother to three including a toddler with FPIES, and an allergy navigator herself since the age of twelve. Margaret recently launched Hots&Olives, a blog dedicated to living joyfully with allergies that can be enjoyed at hotsandolives.blog

Global FPIES Day 2017: Steps4FPIES

We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day. 

This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether it was through sharing your story with us and in your communities or changing your profile picture to build awareness, you helped to reach out and “start the conversation.” In writing blogs, contacting local media, hosting events or distributing FPIES informational resources to increase education, all of your efforts were an inspiration! Every voice matters, every experience shared today makes a difference for tomorrow.  

If you have not already done so, be sure to watch and share FPIES Myths, the newest FPIES awareness video given to this community by FPIES moms and volunteers Heather Martin, Jackie Morrow.  We thank Heather and Jackie and all those involved for their time and talents contributed to the making of this video.  

We were thrilled to hear a research update from Dr. Jeanelle Boyer, FPIES mom and researcher at Keene State College who is actively doing research on FPIES and the microbiome. Be sure to tune in to our youtube channel and get the updates on her research!

And, of course we are grateful to those listed below and to all who partnered with us to further the reach of awareness.

• Allergy and Immunology Foundation Australia (AIFA)
• My Kids Food Allergies
• CMNuA
• Feeding Tube Awareness
• SEIPA Quebec
• AusEE
• Allergy Punk
• Sarah’s FPIES Clubhouse
• Food Allergy and FPIES Mommy
• Kuhmilchallergie
• Neocate Nutricia
• No Biggie Bunch
• Hopecentric  
• NeedyMeds
• Allergy Superhero’s
• Turn it Teal
• Big Little Mommy
• TravelinFabFive
• Global Genes 

The need for awareness among providers and in our communities, alongside advancements in researching mechanisms, remains essential to continually building an increased understanding of this diagnosis and support for those affected by it. We remain committed to this work and we thank you for your support!

This post written by Joy Meyer, Co-Director/Co-Founder of The FPIES Foundation. 

Talking with Children about Allergies: A Guest Post

This post originally appeared on Hots & Olives, Joyful Living with Allergies and is being shared here today by author Margaret Hancock, food allergy and mom to a child with FPIES. 

Talking with Children about Allergies

I remember it vividly. I walked into the taqueria for chips and salsa and left with the stunning realization that I didn’t know how to explain allergies to my child. 

It was kids night at the local Mexican restaurant and as part of the festivities, a balloon entertainer went from table to table twisting into reality Weiner dogs and giraffes. My toddler daughter’s face lit up when she saw them while my own face winced. For those latex balloon configurations were an exciting novelty to her and an allergy trigger to me. 

I told her we couldn’t get one and she began crying. I consoled her and said another time. I told her I was so sorry and apologized for not being able to accommodate her very normal request. I agreed that it was sad. I looked to my husband to jump in. I wept into my margarita.

In short, I did everything wrong. 

The next day happened to be her annual check up and with the previous evening’s incident fresh on my mind, I asked the pediatrician about explaining allergies to a three year old. He told me she is smart and to tell her the truth. Every time we encountered an allergen, simply say “that makes mommy sick.” Repetition is key. Say it over and over again. “That makes mommy sick.” Saying different things, using different words, or stumbling over different explanations and looking to someone else for an answer is confusing at best, and terrifying at worst, to a young child. The concept that something making someone sick clarifies. 

He also said to never apologize or emotionalize it. For its not something to be sorry for or emotional about – it’s a medical condition the same way any other condition is. She will only be sad if I make it sad. She will only cry and emote if I give her permission to cry and emote. 

I thought this all made darn good sense, but I needed to see it in action. So the next time we were faced with a balloon opportunity, I knelt down, looked my daughter in the eyes and said “those balloons are beautiful but we can’t go near them. They make mommy sick.” She nodded her head, shrugged her shoulders, and said “oh, okay.”

Amazing! My child IS smart and DOES deserve the truth! 

Having the knowledge to say these simple few words in a matter of fact, unemotional manner empowered me. I felt like I had the necessary tool in my tool belt and no longer felt panicked that I would encounter an allergen with my daughter in tow.  

This also translated well when several years later, we explained to her that her baby brother had allergies, too. “That makes W sick” not only makes sense to her, but she can easily explain it to others. I overhear her use the same line to her friends when they question why W’s breakfast plate is piled high with hots instead of buttered pancakes. She says it matter-of-factly, unemotionally, and confidently.  

The simple truth at play!

This post was written by Margaret Hancock. Margaret is a writer, a mother to three including a toddler with FPIES, and an allergy navigator herself since the age of twelve. Margaret recently launched Hots&Olives, a blog dedicated to living joyfully with allergies that can be enjoyed at hotsandolives.blog

Living with FPIES: Halloween Idea's!

Halloween is one of my favorite days of the year. I love holidays in general, and even though Christmas will always have a special place in my heart, there are some pretty big expectations wrapped up (pun intended) around December 25. Big extended-family get-togethers, possibly involving travel, a fancy dinner – of which our children living with FPIES may or may not be able to eat a single thing without major modifications – and choosing (and paying for) the perfect presents. All of that can definitely add some stress to the joy of the season.

But Halloween… dress up, eat treats, and hang out with our kids? Yes, please. Up through my twenties, I was all about the candy. I was almost as excited for the day after Halloween, when all the sweets went on sale. But now, after having had two kids with FPIES, and having to restrict my own diet in ways that rule out most commercial candy, we celebrate in different ways, but enjoy it even more. My kids are a few months from turning 3 and 5, so what works for our family may not work for yours, but I hope you can find some ways to keep the focus off the candy and on having fun.

We do Halloween/pumpkin/fall crafts throughout the month, mostly card making. Making cards has got to be my favorite craft of all time, because it’s relatively cheap, easy for me (I provide supplies and some ideas, then my involvement is limited to occasional help with scissors and reminders like “don’t put stickers on the dog”), and the finished product helps us stay connected with family and friends who don’t live close to us. We haven’t decorated very much in the past, but I hope to start next year. We also are going to paint some pumpkins teal to put on our front porch in honor of the Teal Pumpkin Project. 

But what about the day itself? And what to do about trick-or-treating? For some families, not participating in trick-or-treating may be the best option, but we have always let our kids participate. We only took them door-to-door for the first time last year, but the preschool they attended had a trunk-or-treat event every year during the school day. All kids are different, but we found that before the age of two, they had fun but didn’t really get the concept, so we just quietly went through their bags for any non-food items they may have gotten (like bubbles), made a big deal out of those, and took all the candy away.

What we did last year, and will do again this year, is to start off by giving them a small basket of treats. I love those little tin pails that come in different colors from craft stores, so I put some special things in those. We participate in the Teal Pumpkin Project, so I often include a few of whatever we’re handing out for that. This year, they’re getting an orange-and-black mini notebook, a Halloween pencil, a glow stick or two, a Spiderman toothbrush, an orange matchbox car, a jumping spider, play dough, a small coloring book, and some safe treats. (I’ll list some ideas at the end of this post for homemade treats, though obviously this will look very different depending on what your safe foods are.)

Then we take a similarly small bucket and trick-or-treat. Our children are young, so we go early, and don’t visit very many houses. Honestly, sometimes it can be hard to watch my FPIES kid trick-or-treating, collecting candy that I’m going to have to take away from him, but knowing that he has some non-food and safe treats he’s excited about waiting for him at home really helps both him and myself. When their buckets are full, we come home, and get set up on the porch to hand out treats. I think this was the favorite part of the day for all of us last year. The boys, extroverts to the core, acted as hosts in handing out our candy and non-food treats, played with the new things they’d gotten from us, munched on sugary snacks they don’t eat very often, stayed up past their bedtime, and just generally had a ball.

My oldest has outgrown FPIES, and my youngest has recently added a particular brand of chocolate to his list of safe foods, so my oldest will get to keep his loot from the night, and we will trade with my youngest for some safe things. I know some families do the Switch Witch, where they leave all or some of their treats in a special place, and the “Switch Witch” comes by sometime in the night and leaves a present in exchange for the candy – like a book, movie, stuffed animal, or so on. Older kids may enjoy donating their candy to the troops or utilizing a dentist buy-back program.

For us, Halloween has been a fun, no-stress time of hanging out together as a family, and the fact that for most of our Halloweens together so far we haven’t been able to give our kids commercially produced chocolate hasn’t impacted that at all. We focus on the fun of dressing up, getting some special surprises, visiting our neighbors’ houses, and ending the day by playing on the porch, handing out treats and getting to see all the costumes that other kids are wearing.

How does your family handle Halloween?

Homemade Safe Treat Ideas:

• Lollipops – I made this with just sugar, water, and cream of tartar, and I suspect they’d work fine without the cream of tartar.
• Animal cookies  – I’m going to make these with a jack-o’-lantern cookie cutter.
• Marshmallows  – homemade marshmallows are surprisingly easy to make. I substitute cane sugar syrup for the corn syrup and skip the powdered sugar/cornstarch topping. When the marshmallows are ready, I melt them in the microwave, mix with a safe cereal and a little safe oil, then pour into an oiled pan to make Rice Crispy Treats.
• Chocolates – if you have a safe chocolate chip, or even chocolate bar, you can melt the chocolate and pour it into silicone molds to make fun shapes. Or just eat.
• Gummies – I haven’t made these myself, but if you have juice and gelatin as a safe, the steps are fairly simple.
• You could use silicone molds to freeze purees or juice (or even water!), or bake muffins or cupcakes in.
• You could use cookie cutters to make cookies, or cut shapes out of soft foods, such as fruit or homemade granola bars.

This post was written by FPIES Foundation guest blogger volunteer Janie. Janie Dullard 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.

Embracing the Gadgets

Before I had my two children, I was never much of a kitchen gadgets or appliances person. Most of what I needed to do in the kitchen, I could do by hand, and I didn’t want to pay for them, didn’t want to clean them, and I didn’t want to try to find space to store them in our usually small kitchens.

And then FPIES.

My oldest had a long list of fails as a toddler, but wheat was one of our safes, and there were a very, very few types of packaged breads he could eat. But between on-and-off availability and shifting ingredient lists, I would spend what felt like hours in the bread aisle muttering ingredients aloud to myself, trying desperately to find a loaf that was dairy-, egg-, soy-, and corn-free.

The most frustrating thing about this experience (apart from doing it several months pregnant and with a toddler), was that it shouldn’t have been that hard. Bread doesn’t need all those extra things in it. When my local grocery stores stopped reliably carrying anything we could eat, I started researching bread machines. My mom, always finding ways to help in our FPIES journey even while living in another country, offered to buy us one. Thanks to the wonders of the internet and free two-day shipping, it arrived that week, and I immediately put it to the test.

It sounds silly to say that a bread machine changed my life.

But I use it 2-3 times a week, and have for over three years now. I make all our own bread. No more wasting ten minutes in the bread aisle. No more dealing with the ever-mounting frustration as you realize that this loaf has whey, and that one has corn flour, and this one has soy in one of its myriad forms. Instead, five minutes of measuring, one push of a button and in less than four hours, there’s a fresh loaf of bread ready to eat. I’ve also used it to make pizza, soft pretzels, cinnamon rolls, hamburger and hot dog buns, dinner rolls, and naan. It’s gotten me through two FPIES kids, my youngest with only a dozen safe foods at the moment, and my own diet, which is dairy-, egg-, and corn-free.

Could I have made all of those things without my bread machine? Maybe. Theoretically. But the stress, hassle, time, and mental energy it has saved me has been huge. And, realistically, I don’t know that I would have been brave enough to try. There’s just something so intimidating about yeast.

Even with as much as I love my bread machine, it still took me a while to embrace other kitchen gadgets, probably because my oldest started to outgrow his FPIES, thus opening up so many more commercially made foods, and I had hopes that my youngest would as well. But as my youngest is now approaching three, and showing no signs of outgrowing FPIES any time soon, I’ve started to cave. He deserves fun foods too, and if I don’t make it myself, he usually can’t have it.

A candy thermometer allowed me to make lollipops, and, more recently, marshmallows. An ice cream maker purchase after our recent move to Texas gives him a treat to help beat the heat. The waffle maker has been fun for our whole family – including any overnight guests we have.

As FPIES parents, we need all the help we can get in the kitchen. I’m not saying you should go on a spending spree and rack up credit card debt stuffing your kitchen cupboards. But if there’s a gadget that could make your life easier, and you can afford it, go for it! Maybe there’s something like a waffle maker, that would let you try a new texture or presentation for your kids, or a gadget that will do what you’re already doing by hand, but in less time and with less effort. I know some families have found a Vitamix to be a huge help in making their own milks, or have gotten a lot of use out of a stand mixer.

It doesn’t even have to be something that would cost hundreds of dollars to be a big help. For some reason, I have always been completely incompetent when it comes to making cut out cookies, and I finally just gave up altogether. Less than $10 for a set of plunger cookie cutters, and a little experiment with a recipe, and now my kids get to enjoy their own animal crackers.  You can find that recipe here. 

This new perspective has helped my focus change from what we can’t eat or make, to thinking of ways that I can work around certain problems. Instead of “Oh, he’ll never be able to enjoy that,” I think “What would it take to make that? Is it worth it? Are there any alternatives? What else could I make that would be similar but still fun?”

 FPIES is a battle, no doubt about it, and a well-equipped kitchen can be a strong ally.

Now if you’ll excuse me, I think I have some more gadget research to do…

What gadget would you splurge on that would make your life as an FPIES parent easier in the kitchen?

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.

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

A Mom-Inspired Food Allergy Journal

Here, at The FPIES Foundation, we love food journals!  You can find a page in the FPIES toolbox dedicated just to food journals and we are inspired everyday by the food journals you have created and have shared with us.  We have shared designs in the past, you can revisit those in this blog post FPIES Tools: Food Journal's for Food Allergies. Today, we share with you another amazing design. 

Inspired by her daughter and frustrated by the lack of food allergy journals specific to her journal needs, Maria, a mom of a child with FPIES, designed her own food allergy journals.  Maria has given us the opportunity to share a little about the inspiration behind her design with you. 

What inspired your food allergy journals?

I am a researcher by training-- I am used to planning and recording experiments. I learned a long time ago that different ways of recording and presenting data will show different trends that will help you figure out the conclusions of an experiment. At the end of the day, that’s what we do with a food challenge: we hypothesize that our child’s body is going to tolerate a new food, we plan our experiment (amounts, frequency and form of cooking), record the results (symptoms or lack of) and draw our conclusions (they can or cannot eat the new food yet).

I tried every type of store bought planner but nothing was set up just the way I wanted. Some of them lacked space for writing symptoms because they focused on the food journal part and left little to no space for symptoms. Others made difficult to write foods and symptoms side by side, and everything together was confusing (to me). It was particularly difficult to record overnight symptoms. So I made my own.

How does this paper version differ from an online version?

This paper system is helpful for doctor visits because all of the information is together, and you don’t need to depend on an internet connection to access what you need during an appointment. 

Also, a paper system doesn’t get deleted. It seems obvious, but when your google calendars, nursing, sleeping logs and photo albums of the last four months get deleted by little toddler hands, you realize how important it is to have data in a format that cannot be deleted.  When this happened to us, all my data was supposed to be stored online, but after downloading the apps I had been using again, they weren't.  I had to face the reality of never getting my records back. Then, after this happened, we found ourselves trying to figure out which foods were causing a reaction. Losing the last four months of data was critical. I promised myself-- never again. 

What types/styles of journals do you have available?

At the moment, there are only two types:

1.  The “Food and Symptoms Journal”, and the 
2. “Food Challenges Planner and Tracker".  

There is also an option for a Bundle package. 

Please note that some symptoms pictured in this journal example may incorporate symptoms that may be related to other types of food allergies or may be related to other conditions.  

It is important to discuss with your child's doctor(s) any potential symptoms notable to your child's individual needs when your child is trialing a food.

What are the differences between the journals?

• The "Food and Symptoms Journal" includes the notes/activities inserts and a summary of symptoms at the end of the month. This is offered in two formats: pre-printed symptoms (which are my personalized list) or blank listing. 

• The "Food Challenge Planner and Tracker" is a year planner to plan for challenges and pages for writing down ideas for food challenges. For tracking challenges, you have a 24 hours/14 days tracker followed by pages to write down the outcomes. The outcomes pages are divided according to food groups. This is also offered in the two formats with pre-printed symptoms (which are my personalized list) or blank listing. 

• The Bundle has both of the Food and Symptoms Journal and the Food Challenge Planner and Tracker plus an additional file for a Medical Information Binder which allows you to write down your notes for every doctor appointment. With the bundle, you not only get an extra file but also a discount.

You mentioned a Medical Information Binder, what do you recommend to keep in the this binder? 

I keep all of the lab work, the ER letter and notes from every doctor appointment and ER visit. One strong suggestion I have is that you write notes of any doctor visit soon after, so that you can remember what was said and what actions are to be taken.

The file for medical information and doctor visits notes has six pages and again, you can print as many notes pages as you need.

Do you recommend this for both new food allergy parents and ‘veteran’ food allergy parents? 

I think it is useful in different ways to different people. Parents new to this overwhelming syndrome have a place to start. It is easy to follow and does have clearly labeled sections, if they choose that option. On my own personalized one, there is an extensive list of symptoms, but there is still additional blank space to write down additional individual symptoms.  Parents might want to customize the symptom list specific to their child, so this is best with the blank journal option.

Both options are easy for other people that might take care of the child temporarily and are not familiar with a recording system (i.e. a nanny or a grandparent). My child's daycare has found that it’s easy enough for them to use, and it has been very useful for me to have a journal that can be used at the daycare.

What do you get when you purchase?

When you purchase either the Food and Symptoms Journal or the Food Challenge Planner and Tracker, you get the corresponding file and instructions for easy printing. If you purchase The Bundle, you get three files (the Food and Symptoms Journal, the Food Challenge Planner and Tracker, and The Medical Information Binder) and the printing instructions. I am just one message away if someone needs further help with printing!  

The “Food Challenge Planner and Tracker” file has 23 pages. You can print as many additional pages as you need.  If you printed it all at once, the Planner is 200 pages long (approximately) and it includes two pages for the activities/notes that can be printed as many times as needed (it has a faint gray line in the middle for easy trimming). I say approximately because one of the features that the journal offers is that it starts on the same month you buy it. Don’t you hate when you need a planner in the middle of the year and you have to leave blank the other half of the year? I do, and I also think it’s a waste of paper. That’s why the “Food and Symptoms Journal” is updated for every month. For example, a journal bought in April 2017 will include the pages from April 1st 2017 to March 31st 2018, plus the insert pages. Therefore, depending on how many weeks each month has, there are slightly more or less than 200 pages. 

What kind of binder do the downloads fit in to?

The Food and Symptoms Journal is best for letter size and a4 paper and binders. You can always print in a different paper size and resize the printing, although there will be some empty space at the bottom and the top. There is blank space along the inside of the pages for hole punching. I have tried the pages in a 3-ring binder as well a disc-bound system. Both work beautifully (although I personally prefer the look of the disc-bound system). In any case, a 1.75” or wider binder will be needed for The Bundle. Please note that both the a4 and letter size will need 11 discs if you choose a disc-bound system.

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 is written interview with Maria Torres, food allergy mom. You can find Maria's Etsy shop here: https://www.etsy.com/shop/MODdesignsStudio

5 Ways to Thank a Doctor!

March 30^th was National Doctors’ Day. Doctors across our country were recognized for the dedicated and tireless work they do each day. Everyday, we acknowledge and appreciate the contributions of the many great practitioners that support our children and families affected by FPIES.  We'd like to suggest some fun ways to show your gratitude down below, but first a quick word on finding a great doctor.

Because FPIES is an uncommon condition, many healthcare professionals may not be familiar with it, making it difficult to find the right doctor for your little one. That’s why The FPIES Foundation has put together our Provider Directory, a searchable database of healthcare professionals that have been recommended by FPIES families and physicians. Just enter your location in the search box to find suggestions for doctors in your area.

However, if you’ve already found a fabulous physician, here are 5 ways to thank him or her today:

1. Probably the easiest way to thank a doctor is to send them a note to let them know how much you appreciate their hard work. Just jot down a few lines on a card and slip it in the mailbox or take it with you at your next appointment. If you’d like to do something a little more fun, check out this handmade lab coat card tutorial. Or get your child involved by having them color one of these free printable thank you cards.

2. Of course, one of the best ways to thank a care provider is to recommend their services to someone you know. If you haven’t already done so, you can contact us and request that we include your doctor in our Provider Directory. Or you can write them a positive review on a physician rating website. Just do a Google search for your doctor’s name and you’ll probably find that one or more rating websites come up in the results list. Pick one and leave a review to let others know why you love your doctor.

3. You can also use social media to let others know how great your doctor is. Share your FPIES story on Facebook or another social media site and be sure to mention which doctor(s) made all the difference in your child’s life. Use #NationalDoctorsDay and link to your doctor’s social media account if they or their office has one.

4. Everyone loves a treat, so why not take a yummy surprise over to your doctor’s office? This blog suggests donuts and offers a printable gift tag that you can print out to accompany your gift. If your child has a favorite FPIES-friendly snack that you think your doctor might enjoy, you could also share a plate of that along with a thank you note.

5. If you’d prefer a non-food gift, consider sending some flowers over to brighten your doctor’s day, as well as his or her office. You can either send the real thing or help your child make one of these adorable paper plate flowers.

While a visit to the hospital or doctor’s office is often an unpleasant experience, finding a skilled and compassionate doctor to help care for your child is a blessing, especially when that child has been diagnosed with FPIES. Be sure to let your care provider know how much you appreciate them.

This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation.