Showing posts with label advocate. Show all posts
Showing posts with label advocate. Show all posts

Wednesday, October 25, 2017

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.


Saturday, November 12, 2016

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. 

Monday, October 10, 2016

Find Your 14 Tools to Get Involved on Global FPIES Day

This year we will be celebrating the third annual Global FPIES Day on October 14th. Once again we are encouraging you to find your 14! Reach out to friends, family, or community members and get involved this Global FPIES Day with one or more of these 14 suggestions.

#1. Create a “Be The Voice” picture frame.
Click here for details on how to download and create your frame. Then share it on your favorite social media site and invite 14 friends or family members outside the FPIES community to make one as well in honor of your little one.


#2. Create and display a FPIES awareness ribbon.
The orange and teal awareness ribbon featured on the “Be The Voice” picture frames is a visible reminder of the strength and advocacy of the FPIES community. You can get your whole family involved in creating ribbons that can be worn or used as decorations. Here are some ideas:
    • You can find two printable ribbon templates here (one flat and one 3D). Print one out for each family member and let everyone decorate them in orange and teal.
    • You can also use the flat template to create a stencil (just cut out the ribbon, leaving the rest of the paper intact). Then use the stencil to paint a FPIES awareness ribbon on a t-shirt, tote bag, notebook, or whatever you like!
    • Make a perler bead awareness ribbon. You can see an example of a perler bead awareness ribbon here and a template for another version here. Just switch up the colors to create your own FPIES ribbon. When completed, these ribbons can be attached to keychains, necklaces, or just displayed as is.
    • Make a larger awareness ribbon or wreath that can hang on your front door. You can find some beautiful examples by typing “awareness ribbon door hanger” into a search on Pinterest.

#3. Cook or bake one of your child’s favorite FPIES friendly snacks.
Take some time today to make one of your child’s favorite recipes and then share it with 14 friends or family members. Including a FPIES awareness card or flyer with each snack can be a great way to share FPIES information.

#4. Wear Global FPIES Day awareness gear.
You can purchase Global FPIES Day clothing and accessories from CafePress.com. Proceeds from the profits of these products go to the FPIES Foundation, so just making a purchase helps our efforts to advocate for FPIES families. You could also make your own FPIES gear (check out #2 for some ideas). However you get your gear, though, be sure to wear it proudly on the 14th!

#5. Share the Global FPIES Day button on your blog and social media sites.
This is a great way for partners and medical professionals, as well as families, to get involved. Just click here to get the html code that can be added to your blog or favorite social media site. If you have a child who suffers from FPIES, be sure to share your own inspirational story along with the button.

#6. Share FPIES educational materials with others.
Global FPIES Day is the perfect time to help your friends and family members better understand FPIES and how it effects your child and family. There are lots of great materials available at fpiesday.com. Take some time to go through the site and pick out a few materials that you can send to 14 friends or family via social media, an email, or a letter.


#7. Start a conversation for FPIES awareness.
Get in touch with a local parent group, breastfeeding support group, school, etc. and discuss the possibility of speaking with the group about FPIES. Be sure to let them know whether you are a medical professional or a parent who can speak about your personal experience. Be sure to check out the resources on our site about starting the conversation.

#8. Share posts made by The FPIES Foundation on Facebook and Twitter.
If you haven’t already, like or follow us on Facebook and Twitter. Then check out some of our recent posts and share a few with at least 14 people.

#9. Connect with 14 other families in the FPIES community.
You know firsthand what it is like to live with FPIES. Take some time today to reach out to 14 other families in the FPIES community and share a few words of support and encouragement. That might be as simple as a phone call or a message on social media, but just let them know that they’re not alone.

#10. Send 14 thank you notes.
Reach out to 14 people who have touched the lives of your family and helped you along your FPIES journey. Whether you send them an email, give them a call, or just send a quick note through social media, take time to say thank you for their support.

#11. Share the medical provider packet of FPIES educational materials.
If you are a parent of a child with FPIES, there’s a good chance that you struggled to find a doctor who could correctly diagnosis your little one’s condition. Help current and future FPIES families by reaching out to 14 medical providers and sharing the educational materials listed on fpiesday.com.


If you are a medical provider, Global FPIES Day is an excellent opportunity to learn more about this condition. Check out these 14 articles for professional education and development.

#12. Share the FPIES information packet for schools and day cares.
You can find information about spreading awareness to schools by visiting our website and clicking on the “Schools” tab. The information packet provides excellent resources to educate school and daycare employees.

#13. Promote the FPIES Foundation's YouTube videos.
Subscribe to our channel on YouTube and then select one or two of our videos to share on your social media pages. Just be sure to share with at least 14 people!

#14. Support fundraisers and awareness events for The FPIES Foundation.
You can watch for upcoming events on our website and Facebook page. If there is an upcoming event in your area, invite 14 people to come out and support our efforts to educate and advocate for FPIES families.

How will you find your 14 this Global FPIES Day?

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


Sunday, August 28, 2016

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!






Sunday, February 14, 2016

Create a Conversation about FPIES for Rare Disease Day 2016!

On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses.  The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.


A rare disease is defined asrare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. (Rare Disease Day)  


As we honor this day, we encourage you to create a conversation about rare diseases:
  • Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycare, schools, and more about FPIES. 
  • Share your story with your local news and on our Inspiring Families page. 
  •           Participate in patient  surveys by signing up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. 
  • Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature. 

Need ideas for starting the conversation? We can help! Need materials to share?  We can help with that too! 

Still looking for more ways to get involved?  You can: 


Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy.  

Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!

Wanting to learn more information about rare disease statistics in general? Visit Global Genes or RareDiseaseday.org pages to get informed and download their RDD materials.


This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation. 


Thursday, November 12, 2015

Global Day Impact in 2015

Thank you so much for your impact on making Global FPIES Day such a success! Our education, support and awareness efforts, coupled with the impact of your participation, reached a multitude of individuals affected by FPIES, their families, and the healthcare providers who serve them.  
Together, we:

We ended the month of awareness with being honored with one of the first Top-Rated Awards of 2015 from GreatNonprofits! We were so touched and appreciative to read all of your reviews!  The reviews by volunteers, families, supporters and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community, recognition we are so very honored to receive.**


**While the Top-Rated Awards ran through the end of October, The Foundation was part of the inaugural group to qualify for the year. In addition, we’ve been added to GreatNonprofits #GivingTuesday Guide—an interactive guide to top nonprofits throughout the years. Look for this near the holidays.

Together, we were all the Voice in raising awareness, while fostering advocacy, education and support for FPIES this Global FPIES Day. Thank you for connecting with us, across barriers of land, ocean and language, in order to better the lives of those affected by FPIES, worldwide.

As we head into the Holiday season, it is our hope that awareness and education highlighted during Global Day can continue to start conversations, enable inclusion, and help keep our little ones safe and thriving through the challenges of this year and those to come. 


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

Monday, February 10, 2014

Feeding Tube Awareness Week 2014

Feeding Tube Awareness Week®, launched in 2011 by the Feeding Tube Awareness Foundation, is a unique opportunity to raise awareness about feeding tubes.  

There are several reasons a child may need a feeding tube.  Food allergies can be one of those reasons and some infants/children living with Food Protein Induced Enterocolitis Syndrome depend on feeding tubes for their nutritional needs.  

What types of feeding tubes are there? There are different types available to meet different children's needs. These include NG Tubes, NJ tube, G-tubes, GJ Tubes and IV Nutrition-- a child's doctor and his/her family will work together to determine which tube is the best fit for the child's situation. For partial nutrition or complete nutrition, from overnight feeds to bolus day time feeds, blenderized diets or elemental diets-- whatever the means or the delivery, the goal is the same: to provide nutrition for optimal growth and development. 


Whether for a family's own education, or to help to educate others and to spread awareness, the Feeding Tube Awareness website has all the information families and their loved ones could need about feeding tubes. Check it out today!


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


Wednesday, November 20, 2013

Your voice: Be a part of the first FPIES Global Registry!


Your voice: Be a part of the first FPIES Global Registry! 
A message from Joy Meyer, Co-Director of The FPIES Foundation 

You are more accustomed to hearing from The Foundation as a whole rather than me as an individual voice.  I am the Co-Director of The FPIES Foundation.  I am one of the moms who founded this Foundation inspired from this incredible online community of families affected by FPIES. It didn't take long after I joined the online support groups (just weeks before my own son was diagnosed with FPIES, in the spring of 2010) for me to see the dire need for these voices to be heard, to be collected in a reliable, medically responsible ‘home’.   The voices offering resources, sharing tools, providing support, and empowerment to one another. And, most importantly, the voice of our children, and what having this allergy meant to their development, to their ‘relationship with food’, their quality of life living everyday with a rare and often misunderstood diagnosis.

Being in the medical field myself, I not only saw that the child’s voices needed to be heard but that the voices from ‘other side of the door’ as well; the voices of the very medical providers caring for our children.   To help their patients, practitioners want to provide the best care but not knowing enough about FPIES or where to turn to learn more about this little known allergy, can be as frustrating for a provider as the families living with it looking for answers to best treatments and management.   

We saw the necessity to build a strong foundation for these voices to be heard.  We knew we would not only need a non-profit foundation with a medical advisory board of health professionals compassionate and knowledgeable in FPIES to provide medical advisement, we would need the voices of the families to be strong, to be collaborative in the research and best practice guidelines of this often misunderstood diagnosis.   We recognize the importance of bringing awareness to the diagnosis while building a growing, solid, foundation of resources, tools and support for living with FPIES today; all while working towards the novel, and continued, research that we know this diagnosis that still perplexes many, needs.  

We also know that for recommendations to be built on evidence-based medicine (medicine that looks at several studies and repeated research before drawing conclusions for recommendations and protocols), it will be necessary for good quality research to be presented by several researchers of various facilities. This will help to assure that the widest range of symptoms are addressed and the best evidence-based recommendations can be developed for improved management of this allergic syndrome in the future.

From our inception, we established an ongoing relationship with REGID (Registry for Eosinophilic GastroIntestinal Disorders) to further educate ourselves on the requirements of a registry for FPIES.  Recently, through our Foundation Alliance with Global Genes, we have been introduced to the importance of our collective voices to the rare diseases community, globally, in the National Institutes of Health Global Rare Disease Registry.  We are excited to introduce FPIES to be among those collective voices for rare disorders. 

Your voice, the voice of your children and your family, will facilitate the evidence gathering that is a vital piece to research.  Several families have expressed my same thoughts over the years, “…if only a researcher could read some of what families share, and the patterns parents see on the support group pages…”  We have always recognized that a vital place for evidence gathering begins in the community, from the families living with this diagnosis.

So, how do we connect families with researchers?  How do we help providers help families?   How do we get the voices of all the various concerns, multiple symptoms, and daily struggles from the support groups to the researchers?   A patient registry! In partnership with Patient Crossroads CONNECT program, a program from the National Institutes of Health Global Rare Disease Registry we are honored to release our latest initiative: The FPIES Foundation Global Patient Registry.

I am just one voice in this community--- your collective voices ARE the Foundation. Each voice-- your voice!!-- is crucial for FPIES studies today, to guide new research for tomorrow. The symptoms and unanswered questions of our children's experiences with FPIES will be heard, recognized and researched further to develop protocols for future treatments and new developments in management and care of our children today. It all starts with ONE-- take a moment and add your child's voice.

Connect to FPIES Global Registry 
Registered families receive notifications when new surveys are posted. 

For more news on the FPIES Foundation Global Registry, see our press release: FPIES News & Events. 



The FPIES Global Patient Registry

  • This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
  • For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.
This post was written by the Executive Board of The FPIES Foundation 


Tuesday, November 19, 2013

FPIES Awareness cards!

With the help of this caring community of families living with Food Protein Induced Enterocolitis Syndrome, we have developed a set of new awareness cards for families living with FPIES, inspired by families.


The business card-sized awareness cards are great for providing simple explanations of FPIES for friends, family, babysitters and so forth. Keep them in your wallet, car, or taped to the fridge to promote awareness and understanding where needed!




This postcard-size FPIES awareness card is great for keeping in the diaper bag or a purse. It not only provides information in plain language about FPIES and how to identify a reaction, but also gives tips on ways others can help to keep children affected by FPIES safe. This is great to share at playgroups, with family or with caregivers!


Along with these newly developed cards, we continue to have the FPIES Awareness rack card, a great at-a-glance explanation about FPIES.   These and more printer-friendly awareness materials are available for downloading and printing (or save the photo and share it in your social media- Facebook, Twitter, Pinterest and more!) from our Raise Awareness page of the website.

We welcome requests or materials via e-mail or postal mail.  Simply contact us at: contact@thefpiesfoundation.org and we will be happy to send you an awareness packet! 

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

Tuesday, September 24, 2013

Living with FPIES: Advocating for Your Child in School and Childcare Settings

Living with FPIES: Advocating for Your Child in School and Childcare Settings
Nichole L. Huff, Ph.D., CFLE

As a mom of a child with FPIES, one of the hardest decisions I ever made was entrusting someone else to care for my son, living with FPIES, for the first time. And, truthfully, for the second time and the third time… and every time that’s followed since. Because every time someone new cares for my son, I have to explain FPIES and everything it entails—the most important of which is what can happen if he’s exposed to a trigger. It’s a bit much to squeeze onto the “Known Allergies” line of standard childcare paperwork.

Needless to say, initially it was just easier to avoid outside childcare. If an FPIES reaction was going to happen, it was going to happen on my clock. Although this approach worked for a while, my “live-life-in-a-bubble” system wasn’t a practical, long-term solution for our family. We had to learn to manage FPIES, and as a dual-income family, this meant learning to advocate for our son in childcare and school settings.

I feel blessed to say that for over three years now, we’ve successfully navigated a full gamut of childcare options (ranging from family members, to babysitters, to Mother’s Morning Out, to church nurseries, to fulltime daycare, to fulltime preschool). Slowly I let go of my fear-driven need for control, and I began to trust others. Instead of being my son’s bodyguard, I learned to be his advocate.

Over the last three years, I’ve followed a few simple F.P.I.E.S. steps when advocating for my child in school and childcare settings:

1. Focus.

When communicating with childcare providers or educators, focus on the facts. The fact is: my child’s safety depends, in part, on the attention given to his food allergy. Every snack, lunch, sippy cup, birthday treat, holiday candy, or crumb on the floor must be monitored. Every time my son eats or drinks something that I didn’t provide, the nutritional label must be read. Text, call, or email me anytime there’s a question as to whether or not a food (or ingredient) is safe. My son’s caregivers must be focused on keeping my son safe too.

2. Plan.

You can never be over-prepared when your child has a food allergy. Always plan ahead. At home, I have any unsafe foods clearly labeled. I have a “safe shelf” where my sitters or son can easily identify quick snacks or meals. I pack a healthy, safe lunch and plenty of snack options each day for my son to take to school. (And in years past when my son ate school-provided meals or snacks, I coordinated with the school to ensure that they knew how to read food labels and identify FPIES-safe foods).  

3. Inform.

When childcare providers or educators initially learn of your child’s FPIES, don’t be alarmed if they’re a little nervous. After all, you’re entrusting them with a lot. Help them learn to take the necessary precautions without treating your child differently. To me, it’s important to inform my son’s teachers that he’s just a normal kid who learns the same, plays the same, and loves the same as everyone else. His diet is restricted, but he isn’t. In our case, he’s just a rough-and-tumble, happy, sweet, smart little boy who can’t have milk proteins.

4. Educate.

Educating yourself on FPIES isn’t enough. You have to share what you know to others. Educate those who teach or care for your child on the essentials of allergy safety. In the case of FPIES, most reactions are delayed, and many need to be treated with fluid or IV resuscitation. With the help of your child’s physician (or using resources like those available at http://fpiesfoundation.org/emergency-care/), create an action plan. Also, most people don’t know how to read a food label for allergens. Educating others on basic allergy awareness is a simple yet effective way to minimize your child’s risk of accidental ingestion. As my son has grown, I’ve also educated him on his allergy and taught him to question the safety of new foods when they’re introduced.

5. Support.

Anyone who cares for my son has my number on speed-dial. I ardently convey that I am available at any time, for any question, big or small. In order to build a thriving, trusting relationship with childcare providers or educators, it’s important that I fully support them in their efforts to care for my son. I ask what I can do to more easily facilitate the management of his FPIES. Sometimes this means providing all of my son’s foods, other times it means visiting the school’s stock room to read food labels. I volunteer to provide safe foods for class parties and I’ve written blurbs for the parent newsletter bringing awareness to my son’s FPIES and offering suggestions for safe treats. By fostering communication between teachers, administrators, and other parents, I help to support the network of people who keep my son safe while I’m away.





Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at http://soapboxmommy.com/

Friday, August 30, 2013

Our History: Building a Strong Foundation


Our Families Beginnings:

Joy’s family:
Our son, Samuel, was sick for months before we knew his symptoms had a name.  Food Protein Induced Enterocolitis Syndrome is what the allergist confirmed after months of trying to pinpoint it on our own, with just the Pediatrician and Dietitian help.  We had been brushed off by several specialists in the hospital we were at and continued to be so even after receiving the diagnosis. FPIES, for short, is a delayed severe food allergy of the gut.  Reactions are delayed and can occur hours after eating, and in Samuel, and several others who experience chronic FPIES, reactions can be delayed days after introducing a new food, making it especially difficult to pinpoint.
Imagine my surprise when just before our son’s confirmed diagnosis, I joined a large online support group for FPIES and his same, bizarre, delayed symptoms were echoed in these ‘rooms’ – as if these mothers were standing there in my living room, and not spread across the country in these virtual rooms.  From unknowns in isolation we achieved understanding in empathy of other affected families.  Just as important as the support given and received were the tools shared.  These tools were pieces of several resources that moms were finding on their own, and coming together to share. The information shared here was very valuable- to each new parent, even to the veteran parents, learning new things daily about this little known allergy.

Amanda’s family
We started our journey with FPIES after the birth of our first daughter, Bridget, and still continue on this road, now with our younger daughter Caitlin, who also shares this diagnosis. When Bridget was an infant, we were very alone, living overseas and lacking medical support for a diagnosis we were attempting to newly navigate. Over the years, we learned to seek out the support she needed and how to cope with the day-to-day challenges that accompany this condition. When Caitlin was born, we were able to put everything we had learned to good use. Both of the girls react to multiple foods and eat very restricted diets-- FPIES is a very present part of our daily lives.
As a parent, I felt and still feel a strong need to connect with other families experiencing similar situations as ours. Every day, I hope that sharing our experiences and offering what we have learned along the way can help make some other family's lives a bit easier. I feel honored to be a part of The FPIES Foundation to help enable change for other affected children and their families.

Meeting on an FPIES Support Board:
Amanda shares:                                
When we first suspected that Bridget had FPIES and shortly following her diagnosis, I was hesitant to join the online communities for support. It seems funny now, looking back, but at the time I think I hesitated because somehow, joining would make all that we had been dealing with that much more real. For some time before joining them, I followed the groups on a large social support forum that had a special group for families of children diagnosed with FPIES.
One day shortly before my daughter's first birthday, I decided to start posting on the forum and honestly, I wish I would have joined these groups much sooner. I no longer felt so alone. There were parents, other families, who saw the same things happen to their children that I saw happen to mine. They were strong, positive, and empowered by reaching out to help other families, such as mine. What I discovered was an incredible group of parents, working hard to help their children have brighter days. Many of these parents were doing this with little to no medical or social support. All of the parents were happy to share information about how they approached food trials, where to find medical journal articles about FPIES, how to use baking substitutions, and so forth.
The parents there often commented how nice it would be to have all of this information centralized, so that new parents joining the community could easily access the tools that existed-- both the credible medical information and the day-to-day parent and family resources. By late spring of 2010, I started having these discussions about creating a place for this information with a now very close friend--- Joy Meyer, one of the founding families of The FPIES Foundation and current executive director. The seeds for the Foundation were planted!

Recognizing the Need:
Joy shares:
It was clear that, aside from the need for more and updated research, there was something large missing for FPIES:  a centralized location for all of this information to be housed. A location for medically responsible and reliable information was imperative; one that families could trust and that a medical provider could reference and learn from, as well. The unique understanding a parent has for FPIES as they watch it unfold before their eyes is with must be recognized -- each new trial, each accidental ingestion, each reaction, each food ‘pass’! 
At the time that I joined that, now large, support forum- I was member #69.  It quickly doubled in size as the months passed.  It seemed that although FPIES was rare, the amount of families joining was increasing quickly with no known reasons why.  With no diagnostic tools for doctors to diagnosis FPIES and with limited research, what happens to the families who don’t find this support forum?  Those who aren’t online or who don’t have FPIES knowledgeable medical providers? It took months for me to find the right doctor knowledgeable in FPIES to recognize the chronic case in my son, months of him being sick; all the throwing up, diarrhea, sleeplessness, screaming in pain, and losing weight.  What if it took even longer? What would families do to keep their children thriving when certain foods that they are feeding them, that are meant to nourish, are acting as toxins in their body?

Connecting with Families:
At the beginning of our children’s diagnosis, we both began a blog- a journaling of our struggles and successes, a sharing of recipes and tools. Having learned how empowering shared experiences were, we wanted to give back.  Families connected with us and soon, we both were meeting several other families- through our blogs, families on this large support forum and others.  These families, who were strong advocates for their children as well, wanted to reach out as well. They had interest in connecting the dots for future families, as well as providing resources and supportive services for today’s families. These were families that wanted to establish a non-profit foundation for FPIES.  This foundation would be a home for all these tools and resources, shared from families and the medical community, collaborating for the health of each child.

The Founding Period:
The founding board was comprised of these eight original families, spread as wide across this country as we have children spread across the spectrum of this allergic syndrome.  We knew it was vital to the foundation to have the insights from collaboration of voices.  These voices of professionalism, coupled with their diverse talents, would create the cornerstones of The Foundation for FPIES. Alongside our founding board, we invited esteemed medical advisors comprised of experts in the field of food allergy and FPIES diagnosis and management. We have always been very committed to providing a medically credible and reliable resource for this rare, oftentimes isolating diagnosis. 

Uniting and Nurturing the Voice:
Parents can be their children's best advocates.  We feel it is part of our responsibility as a Foundation to help support parents in this role. After our founding, we knew reaching out and helping families to discover their voices was essential. For the next step in our Foundation's development, we introduced family-friendly tools and resources addressing every step of living with an FPIES diagnosis. These include but are not limited to: a medical practitioner locator, an expansive and thorough question/answer section, and printable resources for awareness, daily living, and emergency situations. Living with a rare disorder can be extremely isolating-- we also provide tools for families to build support groups, to create new support systems.  
We have not forgotten the medical professionals that support our community. With an esteemed medical advisory board, we have developed tools for practitioners to better educate themselves about FPIES and to learn ways to connect with the families they serve. With the growing multidisciplinary additions to our medical advisory board and a panel of volunteer parent advisors, we continue to put a name and a voice to FPIES, empowering families to be strong advocates for their children, as well as empowering the medical professionals who care for our children living with FPIES to share resources and tools to make the everyday lives of FPIES children and their families easier.
The Road to Empowerment:
Today, we continue forging the road to empowerment for families and the medical professionals that support them. By following this path, FPIES awareness, education and research all remain at the forefront of our Foundation's mission. We are diligently working to deliver new educational initiatives for the coming year, directed at various facets and disciplines within the healthcare community. Once complete, these initiatives deliver tangible tools into the hands of those professionals who can in turn pass them directly to families in need of support and day-to-day resources. Furthering FPIES education will continue to raise greater awareness to this rare disorder.
This awareness, coupled with improved FPIES education for medical professionals, will set the stage for increased interest in FPIES research. More importantly under these initiatives, special projects, and the resulting increased awareness, children affected by FPIES will gain opportunities for improved quality of life and better daily FPIES management. Our children deserve to have brighter and more pain-free days. At The FPIES Foundation, we will continue to move towards achieving these goals as we maintain focus on the heart of what brought the Foundation together in the beginning—the families and the children we care for and empower every day.

This article co-authored by Amanda LeFew and Joy Meyer. 

Amanda LeFew is the mother of two girls diagnosed with FPIES. To read more about the family's journey, please visit http://fpiesfoundation.org/inspiration-stories-the-lefew-family/. Amanda is a founding member and Co-Director for The FPIES Foundation.

Joy Meyer is the mother of four, their youngest child, Sam is living with FPIES. To read more about the family’s journey, please visit http://fpiesfoundation.org/inspiration-stories-our-little-man/). Joy is a founding member, and Co-Director/Chair for The FPIES Foundation. 

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