19 Secrets Families With FPIES Wish Others Knew

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Food protein-induced enterocolitis syndrome (FPIES) is a rare type of food allergy affecting the gastrointestinal (GI) tract. “The symptoms often include profound vomiting, diarrhea, and dehydration, which can lead to severe lethargy, change in body temperature and blood pressure,” according to The FPIES Foundation. It can be difficult to obtain a diagnosis for FPIES because unlike typical food allergies, standard allergy tests are often ineffective, and food-related symptoms are not immediate. About 60 to 90 percent of children with FPIES outgrow their allergies in the first three years of life. However, there are cases where FPIES will continue into adulthood.

The Mighty collaborated with The FPIES Foundation to ask our communities, “What’s one secret you wish others knew about caring for someone with FPIES?” Their responses reflect the social isolation and anxiety both parents and children face daily when going to school, the playground, or even friends’ homes for dinner. Families with this rare allergy hope for increased understanding, so here is a glimpse into their lives with FPIES:

1. “Even though it’s different than a traditional allergy, it’s still very serious. Some people tend to think it’s not serious or a real allergy. When your baby ends up in the ER, you know it’s serious and real!” – Casidy J.

2. “It’s not that we want to be alone and stay home. It’s the only place we feel somewhat safe and in control.” –Shannon B.

3. “The child is the true hero. My son is 8 and is FPIES to cereal grains. He is his own advocate and loves reading food labels to ensure he is going to stay healthy.” – Shavon F.

4. “My son is at the age where he’s noticing he can’t do all the same things at daycare. Sure, he only eats food from home, but he is also excluded from certain crafts, birthday celebrations, and a lot of holiday parties. He has to sit all alone if there is a messy treat or activity. When someone makes an effort to have something special for him (approved by me), it means so much.” – Diane K.

"When someone makes an effort to have something special for him, it means so much."

5. “You wonder if you’re ever going to be able to fully trust someone else, besides your spouse, to watch your child so you can have a 10-minute breather. FPIES is exhausting. It’s expensive. It feels never-ending.” – Jacie D.

6. “I wish people would understand that just because his allergies don’t require an EpiPen, it doesn’t mean they aren’t life-threatening or dangerous. FPIES is rare but real.” – Tina Y.

7. “Just because you may not ‘understand’ what a family dealing with FPIES is going through, they still need your love and support. It’s a long and oftentimes lonely road. You don’t have to get it, you just have to show kindness and love.” – Katie K.

It’s a long and oftentimes lonely road. You don’t have to get it, you just have to show kindness and love.”

8. “It’s heartbreaking to see your kid get upset because you have to leave the playground as soon as you get there because other parents let their kids eat food while running around the equipment. As an FPIES parent, you have to consider all the unknown food as a potential trigger.” – Amanda D.

As an FPIES parent, you have to consider all the unknown food as a potential trigger.

9. “Not everyone outgrows it; there is no guarantee. My 6-and-a-half-year-old and best friend’s 7-year-old still avoid FPIES triggers daily. It can be a long road!” – David T.

10. “I spend each day terrified that the tiniest of crumbs, a sip of unclean water, or a lick of a surface that has not been sanitized properly could make my baby horrendously sick and land him in the hospital yet again.” – Brittany S.

11. “I am trying to raise a child whose illness doesn’t define her, and instead what matters are all the smart, funny, silly, sassy things she does and says does. It’s difficult to have everyone else understand this and not isolate her because of it, or place negative connotations on what she can’t do or can’t eat. I try to make sure she knows she can do things her way, even through all of the things she can’t.” – Tatiana Z.

12. “As the parent, you probably know more about FPIES than most doctors and pediatricians do.” – Nicole B.

13. “It’s extremely socially isolating for both little ones and parents.” – Janine M.

It’s extremely socially isolating for both little ones and parents.

14. “Always check with a parent before offering another child food of any kind. You just never know if that seemingly harmless treat or snack could make them really sick.” – Katrina R.

15. “It is heartbreaking when your toddler asks for foods they can’t have, and not being able to accommodate their desire for new experiences.” – Mary K.

“It is heartbreaking when your toddler asks for foods they can’t have, and not being able to accommodate their desire for new experiences.”

16. “My daughter is allergic to green vegetables. I worry she’s going to have a nutrient deficiency and it will affect her growth and health.” – Tiffney G.

17. “There was a point in my daughter’s life where the only thing she could eat was white potato and coconut. Everything else sent us to the hospital. Yet each time we would meet a new doctor, we would see a look of disbelief flash across their face. Just because FPIES is an invisible illness, doesn’t make it any less real.” – Laura B.

18. “We want others to know alienating it can be. We know it’s difficult to invite us to the dinner or event because that means you’ll get a thousand questions about food, and you’d rather not have to deal with it. But it doesn’t mean we’re ungrateful for the offer.” – Heather O.

19. “Most of the time the strength and bravery to get through a day comes from our daughter. Her smiles, laughs and kisses get us all through the tough stuff. Being the parent of a child with FPIES doesn’t make you a superhero, it gives you the opportunity to raise one.” – Alliyson F.

Being the parent of a child with FPIES doesn’t make you a superhero, it gives you the opportunity to raise one.

Do you have a child with FPIES? What’s one secret you’d like others to know? Leave your comment below.

We want to hear your story. Become a Mighty contributor here.

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I Am the Mother Who Used to Think Most Allergies Were a Joke

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I used to think most allergies were a joke. I used to cringe when people wouldn’t let their kids eat something because they got a little rash around their mouth, a few patches of eczema, or a stomachache. I would think, just give it to them and their body will get used to it or stop babying them so much. I just didn’t get it. I thought it was a huge inconvenience for everyone else around them.

Horrible, right?

It’s kind of like how before someone has kids, they can be quick to judge.

I was the mom who easily judged others, and now I have become that “allergy mom.” I am the mom to a young boy who has food protein-induced enterocolitis syndrome (FPIES). He is a 2 and a half year old who can only eat 20 foods.

I am the mom whose kid will not be able to eat most snacks other kids bring to school.

I am the mom who freaks out when another kid spills Goldfish crackers all over the playground.

The mom who dreads going to any social gathering with food.

I am the mom whose child can’t eat at most restaurants.

The mom who has to bring her son’s safe food everywhere we go.

I am the mom whose child is the reason other kids will have to bring fresh fruit or store-bought snacks to school that have all the ingredients listed.

And the other parents – they don’t get it.

They don’t understand, and people might start to think that anything to do with my child’s allergies is a hassle. Until one day, you are the “allergy mom.”

And just like that, life changes.

You start to see from different eyes. I am that mom whose kid will go trick-or-treating with his brothers and sisters and not be able to eat the candy. There may be tears, and there may be tantrums. And we will get a lot of looks. Very few will understand and most will think it’s an annoyance to have a different treat option for those kids who can’t eat candy.

So I ask anyone that is giving out candy this year, and in the years to follow, to consider having a non-food treat for kids with allergies or intolerances and be a part of the Teal Pumpkin Project.

A small amount of kindness and empathy towards kids with allergies means more than you will ever know. 

We know we can “just keep him home” and not allow him to trick-or-treat with his siblings.

We don’t expect the world to bend over backwards for him, but we do believe in kindness and empathy.

We have a passion for all kids with allergies to enjoy Halloween just like every other child. 

It is my wish this year, that thousands of children with allergies all over the nation can find a few houses that make them smile. Please join the Teal Pumpkin Project and make your home on the other end of that smile.

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When Chipotle Refused to Sell Me an Avocado for My Son’s Food Allergies

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Brighton eating a banana
Brighton.

One evening, we were driving back from vacation. It was late and everyone was starving.

It is not easy for our family to stop for something to eat. Our fourth child, Brighton, can’t eat at restaurants due to cross contamination.

He has food protein-induced enterocolitis syndrome (FPIES). He was about 1.5 years old during this trip and had a handful of foods he could eat. We always bring his food with us, but with just having a few hours left in our trip, we were out of food for him.

We looked hard for a place to eat, trying to think of somewhere that would have an avocado or banana for our son. We stumbled across a Chipotle. Perfect.

We got all the kids out of the car and marched right in. After ordering everyone’s food, I asked if I could also buy an avocado.

Just one, whole avocado.

I explained that my child had severe allergies and he couldn’t eat anything there except for an avocado.

The cashier shook his head at me and said that he didn’t think he could do that.

“Please, I’ll pay $20 for just one avocado.”

I didn’t care what it cost, I just wanted my son to eat something. My eyes filled with tears as I thought about bringing all the other kids their food and having nothing for Brighton.

I could tell this young man wanted to help me.

So he got his manager.

“Please Sir, I will pay anything for one avocado. I would buy him some of your guacamole but he would get severely sick. An avocado is all he can eat.”

And… the manager said no. We then fed our other kids while my husband distracted Brighton and fed him a bottle of his special formula.

And it broke my heart.

Thankfully, this doesn’t happen everywhere.

There have been many restaurants that look at me strangely when I ask for one banana or one avocado. But they always figure out a way to ring it up and serve it to me.

Sometimes I explain the situation. Sometimes I don’t.

Sometimes they cut up his banana and bring it to him on a plate.
It seems so simple and silly, but this makes our son’s day.

He gets to eat like everyone else.

Then he looks up at them with his big dark eyes, messy hair, dimpled smile, and says thank you.

And he means it.

More than any other child.

The fact that you brought him a banana on a plate may seem meaningless to you.

You don’t know his story, but you made his day.

You don’t know that he eats the same few foods over and over.

You don’t know that there have been restaurants that have refused to sell us one banana or one avocado because it’s not an item on their menu, although they clearly have it in back.

But you did something.

You helped our son.

You made up a price. You figured out a way to ring it up.

And you served it with a smile. No questions asked.

And we thank you.

Because you just gave our little boy a real life experience to be “normal” at a restaurant.
You filled his belly with food, and you filled his heart with joy.
We hope more people and restaurants can learn from your service and kindness.

Follow this journey on Mommy’s Love Marks

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. Check out our Submit a Story page for more about our submission guidelines.

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When a Teacher's Email About My Son's Food Allergies Made Me Cry

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Young boy named Cayden eating a snack at school My son Cayden is 5 and in kindergarten. He’s no stranger to class parties
at the holidays, as he’s been in daycare and preschool since he was 2 and a half. He’s also no stranger to being excluded from these parties and from nearly every food-based activity at school because of his multiple, severe food allergies. He has a rare disorder called Food Protein Induced Enterocolitis Syndrome, or FPIES for short. Currently he has 12 known food allergies and can be allergic to any food he’s never had before. No test exists to see what he’s allergic to, other than feeding him something new and seeing if he gets sick.

I’ve become accustomed to sending every single meal, snack and dessert for him to school. He has a lunchbox half the size of his backpack for this very reason. And every time there’s a party or birthday, I send a treat box so he can have something special while the other kids eat the store-bought cupcakes and candy bars and pizzas that always seem to accompany these events.

This holiday party I was expecting to do the same, but an email from his teacher stopped me. When I read it, I started to cry.

I wanted a party for Cayden where everything is Cayden friendly. Mrs. Sheets and I are going to go out and buy Mott’s 100% apple juice original, Lucky Charms, Armour Vienna Sausage original, sugar free jello strawberry cups, and classic Lays potato chips (yellow bag). I would like for a day where Cayden won’t have to worry about what other people have and where he can have everything. If you see something that would not work please let me know!! I tried to go on by what you brought to class for him and what was on the list of approved foods. You are more than welcome top op by tomorrow or Friday or both to ensure that everything we have is approved!!

It read:

I wanted a party for Cayden where everything is Cayden friendly. Mrs. Sheets and I are going to go out and buy Mott’s 100% apple juice original, Lucky Charms, Armour Vienna Sausage original, sugar free jello strawberry cups, and classic Lays potato chips (yellow bag). I would like for a day where Cayden won’t have to worry about what other people have and where he can have everything. If you see something that would not work please let me know!! I tried to go on by what you brought to class for him and what was on the list of approved foods. You are more than welcome to pop by tomorrow or Friday or both to ensure that everything we have is approved!!

His teacher and her aide also sent notes home with the other students saying all food would be provided for the party due to food allergies in the classroom. I offered to make cupcakes so the kids would have those as well.

The party was a complete success. Cayden was able to eat everything without fear, and this mom was crying happy tears at the generosity and care of my son’s teacher. She’s made this a holiday party to remember and has set the bar high for his future teachers.

We hope our stories help you. Get more like this one by following our topics.

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The Hardest Words I’ve Ever Had to Say, and How Saying Them Changed Me

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There are many things in life that no one can prepare you for. There are things that words alone can not explain. The day I took my baby off life support was one of those times.

So many different people in the small crowded hospital corner, and yet no one had the words to explain. The Doctor’s words still echo in my mind after all these years. When I became pregnant, no one told me mothers might be asked to make such horrifying, heart wrenching decisions.

No one can prepare you for the mix of emotions you will experience after loosing a child. No one can tell you the right way or the wrong way to grieve. Mainly because such ideas does not exist, everyone will grieve differently. Its almost impossible to go from making a life decision like taking your child off life support to jumping into grief mode. No one will understand the responsibility that comes along with such a decision, unless those words are spoken directly to you. Unless someone else has to answer a question that is every parent’s nightmare, no one could possibly begin to feel your pain. Loosing a child is one of those unimaginable things for a reason.

It took days after my child had died  before I could fully understand what had just happened. I was stuck in shock for days, my mind full of fog. Even though the doctors had told me his chances of survival the day he was born, no one told me about this. About how to be someone I had no intention of being.

I had just finished setting up the nursery, not knowing in a mater of days I would be taken to the hospital by ambulance, followed by watching my baby fight for his life and undergo brain surgery shortly after his birth. I only got to hold him twice in the month he was with me, the first time was about two weeks after his birth. He was 2.4 pounds and full of wires. It was hard to enjoy the moment with so many others people around. The cords only stretched so far and the machines kept beeping. I sat in the chair and held him while I thought to myself this had to be a bad dream, I couldn’t possibly be there.

The nurse took him from me after a few minutes and placed him back in his incubator to regulate his body temperature. I couldn’t help but feel cheated. Within the following days I got to change his diaper for the first time. I began to feel more like a mom. Unfortunately his health took a downward spiral which would lead me to the second time I would get to hold him. His body was not recovering from surgery and his organs were shutting down, his body was not accepting the ventilator to breath for him any more. The staff of nurses had been hand pumping air into his small little lungs for hours. All eyes were on me as I made the decision to stop his pain.

I remember there was so much noise, and machines were going off, conversations going back and forth between the hospital staff. Except for the moment I spoke. The moment I had to say the hardest words that ever came from my mouth. The room suddenly went quiet. At that moment I held my baby for the second and last time.

It was at that defining moment that the person I thought I was, would die along with him that day. As a part of me died, a part of me grew. I would forever look at the world through different eyes. I would have different dreams and desires. No one told me how much I would change, no one really could.

Because of that time in my life I would grow into a women with a better understand of myself. I will forever know the strength and courage that I hold within me. I will always know through tough times I can see it through, and I will always remember I have my very own angel watching over me.

A version of this post originally appeared on Special Parent1’s blog

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Being the One Who Helps People and Learning When to Accept Help

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Ever since I was a kid, I’ve always wanted to help people. I’d be the first one to get the newspaper for my dad to make a fire.  I donated every cent I had in my pocket to people ringing bells outside grocery stores for charities. (One year, I even stood ringing the bells, myself!)  And whenever somebody misplaced something, I was the first person to start looking for it.  Whatever I could do to make a difference, I would do it.

When I was 15, I was diagnosed with Asperger’s Syndrome. This form of autism can be hard for me some days. And during those difficult days, it’s OK for me to accept help from others. I may need an extra hand with keeping my room clean. Sometimes I need help at school or work because of communication issues. I can’t drive myself to many places on my own, and I must rely on my friends and family to help me travel long distances.

But none of this has changed my desire to help people myself.

I have made bracelets out of duct tape, and sold them to raise money for others with autism. I raised enough money one year to purchase an iPad with a protective case for a class of kids on the autism spectrum. Another year, I raised enough money to provide a scholarship for a child to attend an autism program.

I have also volunteered in various places for many years. In the past, I have volunteered finding books that people place holds on at my library. At my local chapter of The Arc, I helped in a class of 2-year-olds with autism. Currently, I help at Easter Seals making picture icons for kids who are nonverbal to communicate with. I also volunteer at my favorite museum, The Franklin Institute Science Museum, for their Sensory-Friendly Sundays.

I may be on the autism spectrum. And I may need help from others once in a while. But I love to help people myself, too. It just goes to show that even though some people might be different, they can still make a difference in the lives of others.

 

Erin donating an iPad to a class of kids on the autism spectrum

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected]
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