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.

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

An Interview with the Awareness Critters Creator!

I was working on my master’s degree in health communication when I met my husband. Fast forward a year and a half later, I was sitting in the NICU with our newborn daughter feeling like I should have paid more attention to the practical aspects of the degree I had been working on. I thought when we left after that hellish week, that would be the worst health thing our daughter would ever go through.

I was wrong.

Fast forward again to when our daughter was 15-months-old, I sat in the parking lot of an allergist office crying with relief and joy. We finally had a name to what had been going on with my daughter – FPIES. I found The FPIES Foundation and through them various online support groups. I found a virtual village of other parents that were leading equally ridiculous lives and that “got it.”

One of the ways I deal with stress is through art, painting, sewing, drawing, knitting, and so much more; really, I have tried my hand at anything artistic over the years, even glass blowing!

One night I was laying in bed—exhausted -- it had been a long day with a toddler and 4-month-old both reacting to something. As a mom of two children with FPIES and other various medical complexities, I am used to being exhausted, but somehow that day was especially draining.

By some miracle they had both fallen asleep relatively early. By all that was good and holy, I was going to take advantage of that and get some sleep! I lay down, but my brain wouldn’t stop working. I kept thinking about how my children had such different lives, how my family had such a different life, than almost all of my friends. I thought of all the medical debt we were not so slowly accruing, and how terrified and helpless it made me feel to be treading water emotionally and financially so much of the time, on top of the already helpless feeling that comes from seeing your child(ren) sick so much of the time. I sent out a desperate prayer (one that I had said many times before), of, “Please help me figure this out! Please help me figure out how to take care of my family!”

All of a sudden, a fully formed idea flashed in my mind of a line of illustrations featuring animals or critters with different special and rare needs. Lists and images started zipping through my brain and instead of falling asleep I was rolling over and reaching for a pad of paper.

Several hours later, I had a paper filled with ideas for different animals that I had dubbed, Awareness Critters. I also had sketched out and then painted an illustration with a mother mouse and her child carrying teal pumpkins.  With Halloween coming up and Global FPIES Day right around the corner, with allergic reactions of my children fresh in my mind, I felt inspired.

I went to bed feeling happy. It had been a long time since I had been creative and suddenly I felt like I had found a calling – even if I was the only one who ever saw the paintings.

Hesitantly, I posted my painting to my own Facebook page and then to a couple of Facebook FPIES support groups. I shared the start of my idea and waited to see how people responded. I felt like I had just jumped naked in front of a giant crowd, and honestly wondered if my art was good enough, and if anyone would like the idea . Self doubt can be exhausting!. 

I was overwhelmed by the positive response and then by requests for illustrations to feature specific issues - diabetes, vision issues, Gtubes, NG tubes, leg braces, epilepsy, and so many more. Obviously, I had hit upon an idea and a need that wasn’t being met.

I believe that everyone, especially the youngest and most vulnerable in our society, should be seen, heard, and loved for who they are and not who the media or society says they “should be”. We are all deserving of love and compassion. We all have the same basic wants, needs and even dreams.

My hope for these Awareness Critters is that they bring awareness to families and individuals struggling with Rare and hard issues.

I have big dreams for these Critters, bigger than I even want to admit out loud yet. I dream of being able to do something that I love, that can support my family and bring about positive change in the world. I dream about being able to bring awareness to the amazing children and families that face the challenging situations that special and rare needs bring daily. I know the exhaustion, terror, isolation, and joy that come with raising these amazing children. I dream that Rare won’t mean “unheard of” anymore! 

This post was written by Brittany Huston.  Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing. 

We're Partnering With The Mighty!

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

Here's an example of the kind of stories on The Mighty: "A Letter to Parents of Children With Special Needs, From a Pediatric Nurse"

We're dedicated to helping people with FPIES in their lives. With this partnership, we'll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Content for this post was contributed by The Mighty. 

The House That Awareness Built

It was a beautiful afternoon and my girls were so excited-- the long-awaited baking had begun!  Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama.  My eldest tied on her apron, read the recipe, and started measuring. When I reached over to help, she turned to me and smiled sweetly, saying,“I can do it myself this time, mama. I'll be OK.”

As parents, we often find ourselves moving towards milestones--- waiting for that first smile, that first sweet sound of our babies' voices, that first wobbly step. The first tiny move towards independence! As parents of children diagnosed with FPIES, milestones often take on a different meaning. We learn to celebrate the “ordinary moments” as extraordinary milestones-- a first food after months of reactions, a new texture that is finally tolerated, that first shared family meal.

Five incredible years have passed since The FPIES Foundation incorporated. Five years of meeting new families, hearing of heartaches and victories, struggles and successes. Five years of meeting and partnering with compassionate and caring medical professionals, expanding medical education resources, and lighting the flame of awareness in places where FPIES was once unheard of. This has been a monumental five years, and what has made it so monumental has been sharing in this journey and these milestones together.

You were with us when we took our first step on August 31, 2011, launching The FPIES Foundation and debuting our website. You were with us, empowering other families day after day, year after year, to find their voices through our toolbox and resources. You were with us, advocating for other families as you shared your own families' inspiring stories. And you are with us today, ensuring The FPIES Foundation continues to be a home for resources, support, and advocacy. This is the house that awareness built, with an incredibly strong community at the core of its Foundation.

From our beginnings, we have dedicated ourselves to overcoming the challenges of FPIES by offering tools for education, support and advocacy to empower families and the medical community. In the ordinary, daily life with FPIES, we have found extraordinary connections. We look to the future as we continue to invest in education, awareness, research and support for all affected individuals, their families and the medical professionals that serve them. Together, we will continue to be the Voice for all those affected by FPIES worldwide; together, we will continue to take big steps for the smallest of patients. Thank you for helping us build the Foundation together--- yesterday, today and tomorrow!

When Life Hits the Fan

When Life Hits the Fan

A guest post by Honor Genetski

I've been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the other side of these stretches. When it's happening I obviously just want it all to go away. 

It started a few months ago when Lemon caught a stomach bug. It hit her hard, but I thought after a few days of gut rest she'd be back to her normal cheery self. Instead her entire system unraveled and she lost the ability to digest anything. She survived on broth for another month while we waited for this monster to run its course. It was a lot of waiting in the dark.

When Lemon gets sick no one knows what's happening. This time after lab work ruled out a few common bacteria and parasites, I was told by her pediatrician that she would defer to me since I was the expert on my daughter's health. I sat with these words for a minute unsure if that was actually a good thing in this case. 

There really isn't a net to catch this child when she falls. I hold her on the way down and we fall together. 

It has me thinking about how we all find ourselves in the depths at one time or another and have to find a way through. Holding healing for yourself or for someone you love is a commitment to staying present with fear, exhaustion, and every joyous gain. It's allowing yourself to be right where you are with the tools you've got.

And rock-bottom serves its purpose in that it's a place to take inventory on what is and isn't working, and to resource for the next steps.

The following ideas are some of my most tried and true methods for navigating the deep and making my way back home again. Hopefully they will help you too the next time life hits the fan in your house.

~ Feel your feet connecting with the earth. This is the most immediate kind of grounding work and can be done anywhere, anytime. There is only so much freaking out you can do while your focus is on your feet.

~ Practice gratitude about anything and everything. Say it out loud. This is life-changing work because it makes acceptance of what is feel bigger.

~ Ask for what you need (or want) from your partner, spouse, friend, and extended family. Don't expect them to know until you verbalize it.

~ Explore more forms of support than you think you need (support groups, therapy, friend time, exercise). 

~ Connect with resources that align with your values – make sure it’s a right fit. If it isn't, allow yourself to explore other options. 

~ Create a space to be with yourself. Choose a place where you feel connected with something bigger than you. Church, yoga, a meditation circle, standing in the forest, or immersing in water. 

~ Some days collapse is a necessary and logical response to what life brings. Go there and find the gem of stillness buried inside. When you feel ready get up and start again.

Honor is a Marriage and Family Therapist, and mom to a child with FPIES.  Honor follows her intuition and hope in the quest for healing on Therapist Mama. where this blog post originally appeared.  It is shared here with permission.  

The Miracle of FPIES

Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact-- medical and non-medical-- this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family's story may differ in some ways, we as a community all strive to make each story heard in order to raise awareness to all points on the spectrum of this challenging condition. If you wish to share your story, please check out our inspiring families page and complete the form to submit your story.  We want to thank the community for all that you do to support and empower one another day in and day out, no matter where our own family's journey finds us. Remember that your greatest gift to each other and to our community can be your voice.

This post is adapted and shared with us from a blog post originally appearing on 

Our Stable Table Facebook page by Carrie Saum

Carrie and Echo

27 months ago, our world changed dramatically.

We discovered that our sweet son, who was just 8 months old at the time, had a rare condition called FPIES. At first, we didn't understand what that meant.  We knew that it was a food allergy syndrome. We knew there were foods that would make him sick. We knew he might or might not grow out of it. And in the back of our minds, we carried with us the knowledge that he there could be serious consequences from reaction complications.

As our knowledge grew, so did our fear. He vomited to the point of shock, twice. His blood pressure plummeted and he lost consciousness. We finally pulled all food (formula/breast milk being his sole nutrition) when he was diagnosed because he threw up every food we gave him, no matter what form, always in a 2-3 hour window, and nobody had answers about why he had this or how to fix it.

We still don't know.

I dug into every piece of research available. I combed forums, Facebook pages, blogs, and medical journals. I spent HUNDREDS of hours pulling information and trying to formulate a plan to help heal my baby son. His doctor, who is a remarkable human and care provider, was at a loss. She only knew of the condition because of a friend, and admitted she knew very little about it and how to treat it. She supported our decisions, chimed in with information when she had it, and helped us brainstorm how to keep him healthy and growing and on target for reaching developmental milestones. No specialists in our area knew anything about FPIES, or how to treat it. When it came right down to it, we were on our own.

In public, we couldn't let our son out of our sight. We couldn't allow him to roam when food was around, which was always. We made everyone wash their hands and faces before touching and hugging our very reactive toddler. We became human helicopters and even so, our son still suffered. His skin erupted and oozed, his diapers filled with blood, his stomach emptied itself until there was nothing, not even bile. Food was a looming, thieving threat, when it should have been life-giving.

In addition to solid information and helpful research available to us, groups of families who also dealt with this disease rose up and reached out their arms. They welcomed us, a warrior tribe of virtual strangers, into their fold. They vented, cried, rejoiced, and helped us fight our way through the very hardest and darkest days.  They offered advice, compiled their own research, encouraged me to follow my intuition to give my son an extended gut rest in hopes of healing enough to tolerate food.

These warrior parents told me how to start an elimination diet that helped me clear reactive foods from my breastmilk. They encouraged me when I wanted to quit, and offered empathy when I was up all night for a week with a sick, reactive baby.

Our little corner of the internet, Our Stable Table, came from all of that heartache. It came from the sleepless nights, a sick baby for which there was no real help, the 21 months of exclusive breastmilk pumping, the 12 months on a strict elimination diet,parents and caregivers who did not quit and would not let me quit, and the place where hope is completely buried beneath heartache and debilitating fear and numbing exhaustion.

It is a miracle that we did not break.

It is a miracle we are intact.

It is a miracle we are still surviving.

As any parent of a child with extra or special needs will tell you, FPIES is life-altering. It changes your world in profound ways you cannot understand until it happens to you. FPIES has robbed us of health, sleep, finances, emotional stability, and almost our marriage. But it has not taken our son. It has given us an army of families who understand and help. It has given us purpose and deep empathy. It has given us gratitude for every breath, every bite of food, and every single day we get to be on this earth.

 

Echo

In one breath, I say to you all, our son is a miracle, just as much as FPIES is our tribulation.

Our babies are miracles. Our ability to continue fighting for them is a miracle. And we never, ever get to forget that.Even though we are drenched in vomit, we are covered in strength. FPIES will not win, it will be our greatest teacher of perseverance, hope, wit, and tenacity as parents and families. 

This is what FPIES awareness looks like. Vomit and miracles. Hope and community. You, dear families with children with extra and special needs, are ALWAYS welcome at our table.

Love,

Echo, Carrie, and Lance

Carrie, Echo, and Lance 

Carrie is an author, recipe creator, food lover, and loves connecting people in her online community,www.ourstabletable.com. With a great sense of humor, warmth, and vulnerability, Carrie brings genuine reality to the Internet, along with tasty food and slightly inappropriate jokes. After receiving her paramedic medical training, Carrie spent a decade abroad and in the U.S. in the non-profit medical sector, before venturing into the world of Ayurveda and integrated health in 2011.

Carrie uses her skills mostly for good these days while caring for her son with extra needs and helping clients from all over the world meet their health goals. She loves spending time around the table with her family and friends. She lives in Portland, Oregon.