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.

10 Winter Crafts for Hospital Stays

Hospital stays can happen all too often for many families living with FPIES and we know it can be difficult to keep your little one occupied. FPIES parent Zack Skrip gave us some really great ideas back in June on Things to do in the Hopsital. Expanding on one of his suggestions, I’ve put together a list of simple crafts that you and your child could do while stuck in the hospital this winter.

To make it as easy as possible, I have tried to limit the crafts I’m listing here to ones that can be done with only a handful of supplies. Some of the examples I’m listing do use other items, like glitter or googly eyes, but for the most part they can be done with only the following craft supplies:

• Paper plates
• Cotton balls
• Construction paper
• Glue
• Scissors
• Crayons, markers, or colored pencils

1. Cotton Ball Pictures

This is a fun tactile activity that you can do with some construction paper, glue, and cotton balls. Either draw or cut out a shape and let your child have fun gluing cotton balls to fill in any white spaces. There are tons of possibilities, but for winter time, check out these cotton ball snowmen and penguins. 

2. Foam Cup Snowmen

For this simple craft, just grab a disposable cup and turn it into a snowman with some construction paper decorations. If you didn’t bring your own cups, there’s a good chance you can find one in the hospital.

And if you can wrangle up six disposable cups and your child is feeling up to a little competition, consider a friendly game of Snowman Slam. Just arrange the decorated cups into a pyramid and take turns trying to knock them down using a rolled-up pair of socks.

3. Paper Heart Penguin

This adorable paper heart penguin requires only glue, scissors, and construction paper. The tutorial suggests using googly eyes, but if you don’t have those in your hospital craft kit, you could easily cut out paper eyes or just draw them on.

4. Paper Snowflakes

If your child is old enough to use scissors on their own, paper snowflakes are probably one of the easiest winter crafts you can do.

5. Paper Plate Crafts

With a paper plate, a pair of scissors, and something to color with, the possibilities are endless! Here are some cute winter themed choices: polar bear (uses cotton balls), penguin, snowflake, and snowman.

These paper plate superhero masks aren’t winter-themed, but as a mama with two little boys who are crazy about anything superhero-related, I couldn’t resist adding it in. There are lots of other paper plate mask ideas out there, as well, so you are sure to find one that your child would enjoy.

6. Paper Plate Winter Hat

Here’s one more paper plate idea. You might not be able to actually wear this paper plate hat, but it looks like a lot of fun to make! Just cut a paper plate in half, glue on some cotton balls and decorate it as you please.

7. Ripped Construction Paper Art

You can create some fun pictures with ripped paper and glue, including this cute snowy owl. Even if your child is too young to assemble the pieces into a more complicated shape, they will likely still enjoy just gluing it all together to create their own unique artwork.

8. Paper Plate Valentine Holder

With Valentine’s Day coming up, I thought it might be fun to include a few holiday themed ideas to round off this list. Here’s one for a cute paper plate Valentine holder. The tutorial uses staples to hold the paper plates together, but you use tape or glue as well. Once you’ve got a heart shaped holder, let your child decorate it with crayons, construction paper shapes, or whatever else you have handy!

9. Heart Wreaths

This paper plate heart wreath would be an easy and fun way to make the hospital seem a little more festive. It would also make a fun Valentine’s gift for someone special.

10. Valentine’s Day Card

Your child might also enjoy making some Valentine’s cards for friends, family members, or even the nurses and doctors there at the hospital. These ASL I-Love-You and I love you to pieces cards can both be done with nothing but construction paper, glue, and a pencil.

We hope you don’t have to spend too much time in the hospital this winter, but just in case you do, consider putting together a simple craft kit that you can grab on the way out the door. And if you and your little one do create any works of art in the hospital, we’d love to see them! Send us your pictures to: contact@thefpiesfoundation.org. 


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

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.