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. 

Global FPIES Day 2016 Impact: How we made a difference

It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together.

Tools that Build Bridges

This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families and spread awareness. They can be found on the Global FPIES Day webpage.

1. We released 9 video presentations for FPIES families. The entire playlist can be seen here.
2. We debuted our new Online Learning Library, where you can find multimedia resources for education and awareness.
3. We offered multilingual resources to reach out to a wider audience and help as many families struggling with FPIES as possible.
4. We focused on nutrition with the release of our nutrition worksheets, which can be found on the Global FPIES Day page and the Online Learning Library. We also talked about the Nutrition Webinar, which was held on October 25^th.
5. We partnered with The Mighty, an online community for people struggling with serious challenges, such as health or mental illnesses. Check out this blog post contributed by The Mighty for more information. We also used Facebook to ask you “What’s one secret you wish others knew about caring for someone with FPIES?” The Mighty used your answers to put together a wonderful blog post, 19 Secrets Families With FPIES Wish Others Knew.
6. We hosted an FPIES Twitter chat with Foundation volunteer Victoria Warren and MAB member Dr. Sakina Bajowala about the ins and outs of emergency care. We’ll be posting a summary here on the blog, so watch for that soon!
   

Families

And of course, many FPIES families found their own ways to build bridges and spread awareness. As in previous years, some created and shared a “I am the voice” picture frame. You can view the online album here.

Others took some time on Global Day to post about FPIES on Facebook, to change their profile picture to the FPIES day button or picture frame, and some even held their own events. Mom and LuLaRoe Consultant put together a family fundraiser, while the Litteral family handed out flyers featuring their “I am the voice” picture frame.

We want to thank them and all the families who reached out to others and found ways to talk about FPIES on Global Day!

Partners

We also want to give a shout-out to our partner organizations who helped spread the word by sharing information about FPIES and Global FPIES Day on their social media accounts and websites. Sarah’s FPIESClubhouse put on a great awareness campaign, including some Webkinz giveaways.

Several of our partners, including CMNuA, No Biggie Bunch, and Global Genes, tweeted or retweeted about Global Day. You can see those by searching for GlobalFPIESDay on Twitter. Others posted or shared our posts on Facebook, including AllergyFree, Feeding Tube Awareness, and My Munch Bug. You can see those by searching for Global FPIES Day on Facebook.

There were many, many other partners who got involved on Global Day and we are so grateful for all the support!

Presenters

Finally, we want to say thank you to the amazing presenters who created the online videos. Your contributions were a large part of this year’s Global FPIES Day and it wouldn’t have been the same without you!

• Kyle Brown, CEO of Patient Crossroads, for explaining the importance of the FPIES Global Patient Registry in “FPIES at a Crossroads.”
• Claudine Crangle, author of “Woolfred Cannot Eat Dandelions – FPIES,” for reading her delightful story for us.
• Dr. Jeanelle Boyer for telling us about her work in “FPIES and the Microbiome: A research update from Dr. Jeanelle Boyer.”
• Dr. Amana Nasir for giving us some very useful tips in “Preparing your child for GI tests and procedures.”
• Honor Genetski, MFT, for reminding us to take care of ourselves as well as our children in “Self-Care for Parents: Reflections for Caregivers.”
• Joy Meyer, Co-Director of The FPIES Foundation, for giving us a new recipe in “Making Hemp Milk.”
• Amanda LeFew, FPIES Foundation Co-Founder and Co-Executive Director, for helping us with our next awareness event in “Creating an FPIES Resource Table for Your Awareness Events” and for helping us foster coping skills in our children in “Creating Calm.”
• The Children's Medical Nutrition Alliance for teaching us about “Navigating Insurance and Medical Nutrition.”

To all who participated in Global FPIES Day 2016, you made a difference! We know that as we take these tools and move forward, we will continue to build bridges and find ways to help children and families struggling with FPIES.

We’d love to hear how you spent Global Day this year, so please comment below and let us know!

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.

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. 

More Insights from the Global Patient Registry

More Insights from the Global Patient Registry

by Hilary Lagerwey 

Last year we shared some statistics gleaned from the data provided by FPIES families across the globe. The Global Patient Registry  is a platform to collect information such as medical history, family history, and specific symptoms. The purpose behind this data repository is to both help families glean some insights into this rare disease and also give researchers some direction so that the whole FPIES community can learn more. The information you all have already provided is invaluable and we are always looking for more people to take the surveys.

In our last report we examined what FPIES looks like so this year we decided to focus on medical and family history. Although no one knows exactly what causes FPIES, data such as this can possibly help further our collective understanding.

As you look through this data for yourself, it is important to note that these are informational survey’s and not collected in the same ways as other types of research such as a scientific study. The data comes from volunteer respondents and all of the information is patient/caregiver reported. Some families might be more likely than others to participate in the survey, and while this means the numbers here may skew towards the more severe and more protracted cases, we feel it is still important to give a voice to this group of FPIES patients. The more data we have the more we can learn and share with researchers. In sharing this information and analysis, our intent is not to present these statistics as conclusions, but as starting points for a discussion amongst the community. This article is just the beginning of these conversations!

When looking at statistics like this for a certain sub-population, in this case FPIES patients, it is most useful if you have a number to compare that to in the general population. For some of these numbers we do have a reasonable idea of how FPIES patients compare to the general population, and for some of these numbers we know less.

Again, keeping in mind that these are survey responses and not a specific scientific study, this information does not support the idea that birth circumstances (C-section births or prematurity) play a strong role in the development of FPIES. The percentages of C-section births and premature births are slightly lower for the FPIES population than the general U.S. population. (Note that this isn’t an examination of whether those numbers are statistically significantly lower, but they certainly aren’t dramatically higher.)

Looking at first degree relatives of FPIES patients (parents and siblings) can help get an idea of whether FPIES tends to cluster in families. Unfortunately at this time the prevalence of FPIES in the general population is not known so we have nothing to directly compare these numbers to, but as awareness spreads and research continues, perhaps we will soon know more about the overall prevalence. If we assume the population prevalence is less than 1 in 10 then this data might suggest a tendency for FPIES to cluster in families. The next question to ask would be does that clustering indicate a genetic component, or some sort of shared environmental factor such as the microbiome, or a combination of those factors?

These statistics that shows a seemingly high prevalence of GI disorders, metabolic disorders, and autoimmune disorders in the family history of FPIES patients, and especially the mothers, are perhaps the most interesting but also the least straightforward of this list. At first glance, this makes one question if there is some sort of genetic link here between GI disorders, metabolic disorders, and autoimmune disorders and FPIES. But we must also keep in mind that this is a pretty broad category of diseases so the number of cases you would expect in the general population is probably fairly high and also tricky to estimate for a number of reasons. 

It is also interesting that in our sample GI disorders, metabolic disorders, and autoimmune disorders seemed to disproportionately affect the mother. Does this suggest some sort of environmental factor in utero that contributes to FPIES? Or is this simply reflecting the fact that autoimmune diseases disproportionately affect women and the fact that women are more likely to go to the doctor and therefore more likely to be diagnosed with any condition? Or some combination of all of these things?

As you can see this data can be very useful and we as a community can help encourage more research so that we can all learn more. This data is very preliminary and these discussions are just the beginning. Please take the survey if you have not already so we can all continue to learn more!

This post is written by FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey.  Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice.

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

The FPIES Foundation Joins with Food Allergy Research & Education In Support of the Teal Pumpkin Project® This Halloween

The FPIES Foundation is pleased to announce its pledge of support for the Teal Pumpkin Project^®, a worldwide movement to create a safer, happier Halloween for all children.

The Teal Pumpkin Project, which launched as an international campaign in 2014 by Food Allergy Research & Education (FARE), provides an alternative for kids with food allergies, as well as other children for whom candy is not an option, and keeps Halloween a fun, positive experience. Participating in the campaign is as simple as buying inexpensive non-food treats such as glow sticks or small toys and placing a teal pumpkin on your doorstep to show non-food treats are available. Those who do not have a teal pumpkin can still participate by handing out non-food treats and hanging a poster which can be downloaded for free from the Teal Pumpkin Project website. FARE’s goal in 2016 is to have at least one home on every block in the U.S. with a teal pumpkin.

The FPIES Foundation joins with FARE in spreading awareness of the Teal Pumpkin project through sharing FARE’s free resources for families to print & share on our website blog and social media. 

You can participate by :

• Providing non-food treats for trick-or-treaters
• Placing a teal pumpkin in front of your home to show you have non-food treats available
• Displaying one of FARE’s free printable signs to explain the meaning of your teal pumpkin
• Spreading the word in your online community. Be sure you’re following FARE on Facebook, Twitter, Instagram and contribute to the conversation using #TealPumpkinProject
• Download free activities for kids  from FARE

“We are so pleased that The FPIES Foundation is helping to spread awareness about this year’s Teal Pumpkin Project^® campaign, as we believe a unified effort will create even greater participation, leading to a more widespread understanding of the severity of food allergies and the impact that this disease has on millions of children,” said Lois A. Witkop, FARE’s chief advancement officer. “Together, we can help ensure a safer, happier Halloween for all.”

For more information, including free printable signs, stickers, posters, flyers and other materials, visit www.tealpumpkinproject.org.

ABOUT FARE

Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. – or roughly two in every classroom. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Our work is organized around three core tenets: LIFE – support the ability of individuals with food allergies to live safe, productive lives with the respect of others through our education and advocacy initiatives; HEALTH – enhance the healthcare access of individuals with food allergies to state-of-the-art diagnosis and treatment; and HOPE – encourage and fund research in both industry and academia that promises new therapies to improve the allergic condition. For more information, please visit www.foodallergy.org and find us on Twitter @FoodAllergy, Facebook, YouTube, and Pinterest.

This post was contributed by FARE.  "The TEAL PUMPKIN PROJECT^® and the Teal Pumpkin Project^® logo are registered trademarks of Food Allergy Research & Education (FARE)." 

Children’s Medical Nutrition Alliance

Here at the FPIES Foundation, we are always on the lookout for other organizations that can help your child and family through the daily struggles and challenges of FPIES. We are therefore delighted to announce that we have recently partnered with the Children’sMedical Nutrition Alliance (CMNuA). To help you understand more about what this wonderful organization does and how they can help families dealing with FPIES, we invited CMNuA to tell us a little about themselves.

What is the mission of the Children's Medical Nutrition Alliance?

Our mission is to improve the lives of every patient and family dealing with digestive disorders, diseases, and other medical conditions that require medical foods and formulas to survive and thrive. CMNuA creates that positive change through direct support, information, education, advocacy, and community.

Who does CMNuA help?

We help children—and their families—who have any severe food allergy, disease, or inborn error of metabolism that may require them to rely on medical nutrition to some degree. It doesn’t matter if your child has FPIES or PKU, we’re here to support and advocate for you!

What support does CMNuA offer to families with children who need medical nutrition?

CMNuA offers several levels of assistance to affected children and their families, including:

• The Fund for Food and Families, which provides each qualifying minor up to ten cases of formula per year—free of charge! To qualify, the child must have a physician-documented need for medical nutrition, be unable to pay for medical nutrition, and must not receive reimbursement from any third-party payers.

• Additionally, those same individuals and their families may apply for and receive diapers and assistance with non-covered medically related expenses. Those expenses can include travel costs when parents or guardians need to take their affected child out of town for treatment or testing.

• We also provide a complete how-to guide and support materials for those families wishing to hold local fundraisers. All of the donations received are run through CMNuA and are 100% tax deductible to the fullest extent allowed by law. The funds from their fundraiser are earmarked for the family’s exclusive use and applied toward the purchase of formula on their behalf.

• Finally, CMNuA partners with sister nonprofits to do webinars and events that provide resources, support, and information. We strive to focus on overarching quality of life issues for these families in six key areas: social, relational, institutional, financial, nutritional and psychological.

Can you tell us about one of the children or families who have benefited from CMNuA's support?

Savannah is a beautiful 2.5-year-old little girl with FPIES. After the sudden death of her mother, Savannah’s family struggled to pay for the expensive medical formula she needs to survive and thrive. At that time, she had NO safe foods and needed medical formula exclusively to survive. As of August 23, 2016, she only has three safe foods in addition to Neocate infant formula—carrots, olive oil, and prunes.

Through The Fund, we were able to supply Savannah and her family with 10 cases of the formula she needs. Additionally, through a fundraiser, we raised an additional $7,500 for the family. We connected them with Nutrica and worked with Nutricia’s assistance program to get the family formula at a substantially reduced price. As a result, the family has not had to buy formula since August of 2015 and has enough money in an account with Nutricia to cover Savannah’s formula through early November 2016.  You can read more on Savanna’s story on CMNuA's website. 

What advice or message would you most like to share with families struggling with FPIES?

There IS HOPE! You are your child’s best advocate and you are not alone. We are here to help you every step of the way with direct support, a listening ear, and referrals to resources and organizations, like the FPIES Foundation, that have the ground level, detailed information about your child’s condition.

CMNuA exists to build a coalition of nonprofits, doctors, parents, researchers, and advocates to support all families with children who may need medical nutrition. From the moment that your doctor suspects that your child may have FPIES, or perhaps another non-IgE mediated allergy, CMNuA is here to work with organizations like the FPIES foundation, IFPIES Association, various social media support groups, medical nutrition companies, and others to help make your journey as positive as possible.

What are the first steps an FPIES family struggling to pay for formula should take?

Contact your insurance company! Many families assume that their insurance won’t cover formula and that an appeal will be denied. In many instances that may not be the case.

Then contact CMNuA! We can provide you with a list of resources for discounted formula, advise you on your options with respect to government assistance programs processes, and share information about mandates in your particular state with respect to insurance coverage.

Additionally, our Fund for Food and Families is a great resource for parents who need help with medical nutrition and often we can ship formula within days of receiving a completed and approved application! You can learn more about the Fund for Food and Families and apply online here: http://cmnua.org/fund-food-families.

  

How can a family impact legislation?

Sign up as a CMNuA advocate and join our mailing list! We work closely with our sister organization, Children’s MAGIC US,

lobbying for mandated insurance coverage of medical nutrition for all children who may need it on both the state and federal levels!

To date, 20 states have some type of legislation on the books mandating medical nutrition coverage, though some are limited to inborne errors of metabolism or age restricted. We continue fighting to change that! Exciting things are happening at the federal level, too, and we are in the forefront of that fight.

Both CMNuA and our sister organization, Children’s MAGIC US, rely heavily on parent advocates like you to write letters, contact your representatives in person and by phone, share your stories, raise public awareness, and even testify at legislative hearings on the state and local level.  Each year, we strategically choose states in which the climate is most conducive to passing broad effective insurance mandates and legislation. We need as many parents behind us as possible, sharing their stories and showing lawmakers why this legislation needs to be passed.

You can sign up as a CMNuA advocate and join the mailing list here.

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

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.  

Resources For Kids: Things to do in the Hospital

Things to do in the Hospital

By Zack Skrip 

At the FPIES foundation, we know that hospital visits can be an unfortunate part of our lives. Many of us have hospital bags packed so that we can trundle our little ones off to the hospital as quickly as possible at any time of the day.

When we are fortunate, it’s a quick visit and we are released the same day. But some visits require more time. In fact, sometimes you’ll be in the hospital, and your child will be well enough to want to do things but due to IVs or maybe hospital policy, you’ll be unable to give them the freedom they’d have at home.

My family spent about 5mos in the hospital last year. When it comes to hospital living, sadly, we know what we are talking about. Also, our hospitalizations were spent across the country from where we live, so we didn’t have the freedom to run home and change out books or toys.

These are the tricks we learned last year.

TV

This is where you’ll start. If your child is quite ill, then this is where you’ll stay, too. Kids are naturally attracted to TV and in your frazzled state you’ll appreciate the distraction also.

Try not to let this get out of hand though. As the hours turn into days, TV has a way of making you (and your child) anxious or “antzy.”

Consider making TV a prize that you get to watch, maybe at a certain time of day (“It has to be after 3pm…”), after they finish their food trial, or maybe after a certain amount of time spent doing a different activity.

I’m going to be honest with you. You are going to watch a lot of television. I know you don’t let your kids watch that much at home. You aren’t a bad parent. Hospitals suck. This is what it is.

Reading

Reading can be tough when you just get to the hospital, especially depending on how sick everyone is, but over time, it’ll provide a very pleasant distraction from the environment and a reason to stop watching TV.

The tough thing about books can be having them with you. Books take up a lot of space, and kid’s books are by nature short--so you need a lot of them. “Kindle!” you all say. Well, yes. There are Kindle versions of kids books, but unless you are really committed to the platform, I’m assuming most of your kids book will be the old fashioned paper kind.

So, unless you want to keep a stack separate, ready to grab on your way out the door, it’s more than likely that you won’t bring very many books with you (if any).

Here’s what you can do:

Buy a few children’s book compendiums. These large, convenient volumes have many children’s books published together. This way you can grab one or two and be set for a short stay. The only downfall, is that they are heavy, and therefore hard to read lying down. Here are our favorites:

• The 20th Century Children’s Book Treasury: Picture Books and Stories to Read Aloud
• A First Book of Fairy Tales
• HarperCollins Treasury of Picture Book Classics: A Child’s First Collection
• The Tall Book of Nursery Tales

You can buy most of these used, and that could save you a little bit of money. Hospital stays aside, these volumes contain many of the best stories, so they’re good to have anyway.

         YouTube

You would think this would be in the same category as TV, but I’ve learned how to convince myself that it isn’t, if only because of the educational value we’ve gotten from it.

As you read through stories or go about your day, think of things that your child might not have ever been exposed to, and then use YouTube to show them what it’s like.

For instance, we were working on a sticker sheet that had dinosaurs and volcano's. I realized my son had never seen real lava before so we spent ten minutes looking at lava flows on YouTube. Many of the YouTubers helpfully put things like pop-cans and iPhones in the way of the lava so we could see them explode into flames.

You have to take your education where you can get it.

Aside from nature, there are all sorts of other fun things to use YouTube for. For instance, my son learned all of the instruments in the orchestra over one hospital stay. We’d search for classical music concerts and then name the instruments. (If you’d like to introduce your child to classical music, I’d suggest you start here. These guys are hilarious.)

Crafts

Crafts can provide a fun way to spend some time. They allow your child to use their fine motor skills, get creative, and still stay in bed (if that’s required).

Coloring is the easiest thing to do, and most nursing stations have crayons and coloring sheets available, just ask for them.

My son and I had fun making different paper airplanes (again, ask for some blank copy paper from the nursing station). We’d watch the instructions (thank you, YouTube) and then try it out on our own. You can see which plane goes the fastest, farthest, loops the best, etc.

Another option is to make finger puppets and then play out your child’s favorite fairy tales or stories. Don’t overthink this. One time I took a couple of non-latex gloves, cut off the fingertips, drew different smiles on them and then acted out Hansel and Gretel.

Of course, Pinterest would have a large offering of more creative options, but in the moment, the glove people worked out just fine (but make sure they don’t get swallowed).

Fun Toys

Toys from home can bring a lot of comfort to your child, as it will bring some continuity to what can be a very scary experience. Whether it’s a few favorite stuffed animals or games, bring a couple of toys with you.

If your child is older, or going to be in-patient for a longer period of time, consider some sort of building toy, like Duplos or Magna Tiles. We love the latter because they pack flat and can be wiped down with disinfectant when they take a tumble to the floor. These tiles can be a bit expensive, but if you watch for deals, you can get them discounted.

Remember that most hospitals have a play room that you can usually borrow toys from. So don’t feel like you have to pack something from home. The best part is that once your child is tired of that toy, the staff will pick it up and drop off a different one.

Hospital Resources

Ask your nurse or the floor social worker what other resources are available. Depending on the hospital, you may find any number of the below are offered:

• Music Therapy
• Therapy Dogs
• Hospital Library
• Children’s toy room

Children’s hospitals especially will have other resources to make your stay as positive as it can be.

Conclusion

These were our favorite ways to spend time in the hospital. What have you found to be the most helpful or comforting while spending time in-patient? Let us know in the comments.

This post written by and contributed to The FPIES Foundation by Zack Skrip. Between working for three different major pharmaceutical companies and being a parent of a child with a chronic illness, Zack knows that accurate healthcare information is vital. He’s a freelance medical copy and business writer, and you can email him at zack@zsmarketing.net.