FPIES Foundation

@fpiesfoundation | partner
The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.
Jennifer P.

Experiencing Anxiety and Trauma Because of Chronic Illness

When my daughter was 2 years old, she had a scary bout of stomach flu. She finally started eating again and was keeping down fluids and food. So I was shocked when I was carrying her out to my car after a visit to grandma’s, when she had a seizure in my arms. There are moments in your life that brand themselves on your memory, and this was one of those moments. I remember her lying unresponsive on the floor while I talked to the 911 operator. When the paramedics arrived, they tested her blood sugar. It was 60. Later I learned that a seizure is sometimes a defense mechanism with low blood sugar; it can act as a way to rapidly get glucose levels up. My daughter was later diagnosed with hypoglycemia. Many things, including her delayed motor skills, delayed speech and her inability to sleep through the night made sense with this diagnosis. She is doing amazing now and her condition is very manageable. I had another frightening experience with my youngest child. He had been struggling with solid foods. It seemed like he couldn’t swallow more than a bite or two of anything. We were celebrating that at 7 months old he had finally eaten something : two tablespoons of chicken. Two hours later, he started intense bouts of vomiting. He wouldn’t stop. He turned blue. He lost consciousness. He would regain consciousness only to vomit again. He vomited nine times in 45 minutes. After a trip to the ER and conversations with some intelligent doctors, he was finally diagnosed with food protein-induced enterocolitis syndrome (FPIES). And later, after many scary episodes where he refused to eat or drink for days on end, he was also diagnosed with eosinophilic esophagitis (EOE). He is doing great now. He eats four foods and is on elemental formula. He is happy and healthy. As it turns out, I’m the one who isn’t OK. I have serious daily anxiety and recurrent nightmares. I remember sitting in the waiting room for my son’s second endoscopy and overhearing a conversation nearby – two women taking about their children who had leukemia. And I thought, “What’s wrong with me? My kiddos have very manageable conditions. They aren’t at risk of death from their diseases any longer. They see great doctors. They live relatively normal lives. We aren’t facing terminal cancer — I should be grateful!” What I’ve come to realize is that traumatic experiences are traumatic. There’s no other way to go about it. There are a lot of “at least” statements out there. I can’t even tell you how many times I’ve heard from well-meaning people, “Well, at least it isn’t cancer.” And my plea to all of you would be to stop telling yourself these “at least” statements, and stop listening to them. If something is hard for you to deal with, it is hard for you to deal with. And you know what? That’s OK. I have been left with emotional scars from my experiences with my children and because I deal with the management of their conditions on a daily basis, it is like those wounds are reopened every time I make a sandwich or bake a muffin. I think it is easy for us to convince ourselves that we don’t need help from a therapist or psychiatrist, just because we aren’t dealing with the scariest disease out there. But if you are struggling with anxiety or depression related to your own chronic illness or a loved one’s — don’t let the “at least-ers” get to you. Take care of yourself. Find someone to talk to. Get the help that you need. Your feelings and experiences are valid and unique to you. If something is causing you distress, it means it is a big deal — and it’s OK to ask for help.

Ray Wood
Ray Wood @raywood
contributor

Things Doctors Often Say to Women, but Not Men

I have Dercum’s disease, an extremely rare condition that is predominantly found in females. I belong to multiple support groups on Facebook, like this one. I have known for a long time that women are treated differently than men are by medical providers, and these differences in treatment (or should I say lack of treatment) are hurtful and dangerous. I am try to offer women who have my rare disease a different point of view, and as I sadly have found, some women are so conditioned to being talked to in a condescending tone, they may not even be aware providers treat them unfairly. These are some phrases women have written in to our support groups that doctors have said to them: 1. “It’s just nerves.” This might be true, but not in the demeaning way doctors often say it to women. Just so you know, I have never had a doctor tell me this. 2. “You just need to lose weight.” This is one of the most “empty” things doctors can say, and again, I do need to lose weight, but doctors have never told me so. 3. “You just need to relax.” What does that mean? I see my friends who are women say often tell me a doctor or nurse has said this to them. I’ve never had a doctor say that to me. 4. “Take a hot bath.” How in the world would a doctor say this in response to something that has nothing to do with a woman’s hygiene? Once more, a doctor has never said this to me. 5. “Are you on your period?” I learned early in life, because I grew up with a mom and several sisters, to never ask “are you on your period or are you having PMS?” I think at a doctor’s appointment, this may be a legitimate question if you are seeing a medical provider for something along those lines, but often this is not the intent of doctors when they ask. 6. “When was the last time you had sex?” This one always surprises me that a medical provider would ask this, unless your visit was to the gynecologist. Again, I don’t get asked this often. As a man, I have never heard or rarely hear most of these things from doctors. I think you can see a pattern. Doctors and medical providers often make women feel that everything they are feeling is somehow “in their heads” and not worthy of a doctor actually looking into their symptoms. I have heard and read multiple times about how a woman was really sick and doctors not taking them seriously caused some very severe medical emergencies. Even the ER staff is guilty of this sexist behavior. I have had friends who miscarried, friends that died from breast cancer, or other cancers that worsened due to a doctor not taking a woman seriously. I guess I should not be shocked, but I am. Dercum’s disease, being a disease that predominantly affects women, has taught me a great deal about how women are ignored or not taken seriously. I do my best to point out these types of things when women in support groups write them and might not be aware they are being discriminated against. If you suspect that Dercum’s disease might be the cause of your symptoms, the following are helpful links with more information: NORD: Dercum’s disease and lipedema.

Skills We Have Learned While Caring for Our Children With FPIES

This post was inspired by a Food Protein-Induced Enterocolitis Syndrome (FPIES) article appearing on The Mighty, “What I’ve learned as a mother of a child with FPIES.” At the end of the article, the author mentions her ability to know the cross-contamination of common grocery store items. When we shared this article with our community, it inspired parents to share some of their own skills learned. We know there are numerous additional skills we parents of children living with FPIES have learned and mastered that other parents of children living without the experiences we share may not even have to consider. For this installment of our “Mighty Moment,” we posed the question, “What are some skills you have learned while caring for your child with FPIES that could be otherwise seen as irrelevant to other parents?” What have we learned?  What skills have we mastered? These were the responses: 1. We learn to read labels like a detective investigating a case. “I feel like I should have an honorary doctorate in “Chemical Engineering” and a part-time job at the FBI for my ability to investigate then analyze the ingredients, possible derivatives and food processing practices of any given food item” — Alliyson F. “I have learned how to recognize the (many) names of corn on a label!” — Joy M. “I’ve learned to spot hidden ingredients like corn, soy and dairy from a mile away. I’ve also learned that the corn industry has its hand in basically all food and medical manufacturing, even water.” — Amanda E. “Label reading! It’s a must for any grocery trip.” — Deana H. “I’m a master label reader and always have safe food on hand.” — Alicia F. 2. We learn to cook with limited and atypical ingredients. “I have learned creative experimental cooking with alternative ingredients. Can I make pancakes out of quinoa flour and breast milk? Why yes, yes I can!” –Kim B. “I learned how to cook ‘typical’  looking foods — muffins, cookies, etc. — with very atypical ingredients. I have learned the ‘chemistry’ behind baking — why certain types of ingredients produce certain types of results.” — Amanda L. “Learning the chemistry of baking and being able to provide a comparable option like what other children eat was always a top priority.” — Melissa S. “Who needs wheat flour, eggs, baking powder, sugar, vanilla and oil to bake a birthday cake, anyway?”  — Jamie D “Making a cake/cupcakes out of jello, fruit, or gift boxes! Actually this one is kind of cool.” — Natalie M. “Learning how to cook all food from scratch!” — Deneige P-H. “I learned how to cook proper vegan food! Bake vegan treats and generally learned how to cook full stop!” — Danielle W. 3. We learn to navigate for the unique needs of our children. “I have learned when my children’s safe produce is in season in different parts of the world so that I know when to ask the co-op to special order it.” — Amada L. “I have learned how to navigate the medical community. If a doctor isn’t helping you find answers, find one that will! We have definitely learned to stick up for ourselves and what we know is happening to our child!” — Olivia J. “My husband’s career moves us often. I’ve learned to navigate new grocery stores and restaurants with ease and where to order our favorites when they can’t be found locally.” — Alicia F. 4. We learn how to handle digestive upset with finesse . “I learned how to spy the vomit was coming before it even came up, and catch it with anything… including my bare hands.” — Katie Lou B. “Poop. I think I know everything there is to know about poop; from the smell to the texture and the frequency. I don’t think most parents study poop like we do.” — Heidi W 5. We learn to be well prepared, always prepared. “I have learned to always have a backup plan, daily. Life changes quickly and reactions come out of nowhere. Always be prepared with safe snacks too, and then your kiddo isn’t as likely to be left out.” — Stephanie M. “Carrying safe snacks everywhere. Pretty much knowing any party or gathering there won’t be much he can have there.” — Nicole B. “Always having safe edible or non edible ‘treats’ to trade at Halloween, school parties, birthday parties, parades or any general outing where people offer your child food without you being able to read the label.” — Natalie M. 6. We learn situational awareness. “I’ve learned to have eagle eyes when food is around. FPIES has taught me to be vigilant without my little guy feeling like he’s different.” — Alicia F. “I have learned the importance of situational awareness. You have to be aware of what others around you are eating, where cooking utensils have been placed, who used what napkin. Birthday parties and family gatherings are hard.” — Michele B. 7. We learn new ways to cope. “I have learned how to restructure our family budget in order to allow for increased spending on groceries and medical supplies.” — Amanda L. “Learning how to make hospital stays more comfortable. An air mattress for two is a must just to get some sleep.” — Andrew F. “I’ve learned also, how to cope with the devastating blow of passing the [oral food challenge] and then completely failing reintroduction.” — Alicia F. 8. We learn to advocate for our children. “Learning how to communicate the challenges of food allergies to others and create a safer environment for all children with food allergies and sensitivities.” — Melissa S. “That it’s OK to disagree with your doctor and keep pushing for what your child needs, even if you don’t know what that is yet. We really need to advocate for our child, to doctors, schools, friends and even family.” — Tanya D “How to advocate for my child when in the ER. Being told that it’s ‘just an episode of vomiting’ while my child is hypothermic, dehydrated and lethargic is unacceptable. Rare shouldn’t mean unheard of in the medical world. Don’t take no for an answer.” — Nicole O. “This is a skill needed for all parents, but I feel that I needed to learn it quicker and better: not caring about the ‘permission’ of others to take care of the health of my child. I can’t even count the number of times people (even strangers) have rolled their eyes at actions required to keep my child safe… without even inquiring why. My daughter has FPIES to dairy and soy. Asking someone to not put their finger in her mouth while they’re eating pizza should not cause a backlash. Asking people to wash their ice cream covered hands before holding my baby at 6 months old (who puts everything in their mouths) should not be answered with a, ‘No… that’s a bit over the top.’ All experiences I’ve had multiple times.” — Aimee J. “Becoming more aware of what is in my child’s food, including mine and advocating for my child and her needs.” — Monica M “How to make sure everyone around my kid knows not to feed him anything without my approval! I may seem like an [overprotective] lady at times, but safety first!” — Diane O’Connor K. 9. We learn to educate others not only on food allergies overall, but on a different type food allergy. “Educating others about what FPIES is and how important it is to be cognizant of what she eats so we can avoid a reaction.” — Monica M. 10. We learn to be confident and to trust our instincts as mothers early on. “I learned how to advocate for my child’s body when many alternative (and often minimizing) opinions on what is going on are thrown at me. FPIES is rare, and in our case mostly chronic. Many people felt I just needed to be firmer with my child when she ‘wouldn’t’ sleep at night. I learned to trust my instincts as a mother.” — Sherry W. “Definitely how to trust my instincts as a mother, even when it felt like everyone thought I was exaggerating symptoms, or that he wasn’t sick because he was growing and hitting milestones.” — Suzy H. “I’ve learned that I do not need to explain my reasons or gain the approval of others for my  parenting choices. Others won’t understand because they don’t know what’s going on. I can’t spend all of my energy justifying these decisions to everyone that interacts with my daughter. I can explain our daughter’s health to those close to us, but I can’t explain it to everyone. People don’t need to agree with me in order for me to protect the health of my child. People don’t know what FPIES is, so they don’t understand in the same way they would for a peanut allergy or something like that. It’s just as dangerous and my little one is just as sensitive.” — Aimee J. 11. We learn how to be completely selfless. “How to be completely selfless. I never thought I’d still be breastfeeding, 15 months into a super restricted diet.” — Suzy H. We are a group of parents raising children with a rare type of food allergy. We often find ourselves learning skills earlier than we anticipated we would need them, or never would have otherwise considered. Any parent would do the same. We want to hear your story. Become a Mighty contributor here . Banner image via Getty: Archv

Meyer Joy

Choosing to Have a Feeding Tube for a Child With FPIES

This week is Feeding Tube Awareness Week and we wanted to share with you how much having a feeding tube has positively impacted our son’s life. The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any of our children. I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called food protein-induced enterocolitis syndrome (FPIES). Having FPIES means he has a delayed food-related allergic reactions There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response. Some babies or children are allergic to one or two foods, while others (like our son) can be allergic to multiple foods, which can further limit the diversity of the diet. Making things more complex, foods like soy and corn, which our son is allergic to, are in/on so many foods (waxes on fruit, can lining, plastic materials, etc.) making his variety of “safe foods” even further limited. FPIES is a rare and often misunderstood diagnosis. Seven years ago, when our son was first diagnosed, much less was known as we searched for best options to provide him with the nutrition to thrive and grow with foods he wasn’t allergic to. It was a constant balancing act that we struggled with every day. Before he turned 3 years old, a feeding tube was discussed by his medical team for months as a means to help him thrive. Despite not having a safe formula to put in the tube, it was hoped that being able to consistently give him his “safe foods” would help his body absorb more nutrients and stop the viscous cycle he seemed to be trapped in. It was a cycle of inadequate nutrition, trials of various foods in hopes of finding nutrition, inflammation causing colitis, pain from the reaction, malabsorption leading to anemia, low blood sugar, vitamin deficiencies, and weight loss. He could not get enough nutrition to make up for the malabsorption, which resulted in weight loss, further anemia, and vitamin deficiency, as well as other unknown internal disruptions to his body. This was repeated with each food trial, each failed food, and each accidental exposure or ingestion. A feeding tube should have been an easy decision. But would it really help him? Neither his doctors nor we knew if it would help his FPIES, but they assured us they were confident it could help him somehow. The final decision was left to us. No one would tell us this was the right decision. We knew the odds were that it would help him, but having a tube doesn’t make allergies disappear or make you less allergic to trigger foods. So we wondered, how could it really help him? We were going through so many emotions. It wasn’t just worrying about food trials — his nutrition was compromised because of his vicious cycle with this diagnosis. He had been on TPN, and after eight months on it, and before committing him to a port for continued and long-term TPN, his team wanted to trial one more formula through a nasogastric tube. We always remained hopeful that his body will accept the nutrition it needs, but after six weeks on this formula, it was clear his body was not accepting it (by his outward demeanor and sensory flares, and then confirmed by inflammatory markers in his blood and stool). By this time, we had already committed to the new G-tube and moved away from TPN. What would we do now? Had we made the wrong decision? We decided to move forward with a blended diet of his safe foods, hoping his nourished body would begin to heal itself, and with nourishment, we could slow down his trials to the pace his body needed for recovery. We hoped we could slowly add more foods, as we expected to do when he was first diagnosed. He had fallen into a vicious cycle, and now his tube would break him out of this. It has been a slow process, but we have been able to add a few new foods a year, filling in his nutrition. Along the way, he thrived. Having a G-tube with safe nutrition allowed us to worry less — about his daily caloric intakes, coaxing him to eat enough, doing “dream feeds,” and staying home to prepare his foods so they were safe and fresh. It has given us so much more. For the first time in years, we were able to keep his blood sugars stable. He started to sleep through the night without waking up hungry. He gained weight and stabilized his hemoglobin, so he was no longer severely anemic. We relaxed around meal times, allowing him to eat his safe foods for pleasure. We relaxed our schedule at home, not having to plan the day around when, where, and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals. He has truly thrived. We are truly grateful for this hardest decision. We want to hear your story. Become a Mighty contributor here . Getty Images via Sohel_Parvez_Haque

Sarah Stone

The Moment I 'Go Blank' When My Child Has a Medical Procedure

There’s a moment when I hold my son, T, for his blood draws, before the countdown starts. Before the elastic band gets tied above his elbow. Before the nurse tries to make overly lighthearted conversation. There’s just a minute when I allow myself to feel guilty. I know what’s coming, and by now so does he. He’s already getting agitated and I can feel him start to pull on my sleeve. It’s a quick second before all hell breaks loose. Before the cold alcohol swab warns him what’s coming. My eyes flutter closed, and I retreat away from the room, the nurses, the tablet and the bright hospital lights. I sit there, in the recesses of my mind and let everything go blank. You see, you need to be the strong one. Even if you don’t want to be. You need to be the brave one, even if you feel the tears prick the corner of your eyes. You are the mother bear and the protector, even if you feel shattered. So I take a moment. Just a quick one. Because once the elastic is tight, the vein has been felt and the alcohol has been swiped, the countdown begins. And then there’s no turning back. Three. Two. One. We want to hear your story. Become a Mighty contributor here .

Survival Tips for Living with FPIES

In the rare disease communities, other parents can be a wealth of information and we witness parents paying it forward every day.  The FPIES Foundation was founded with these same pay-it-forward goals in mind, sparked by the desire to help other familiesfind their way. Food protein induced enterocolitis syndrome (FPIES) is a delayed type of food allergy. Planning ahead and being prepared are some of the biggest tips other parents of children living with FPIES shared with us. This is what they had to say: 1. “Always be prepared. I never want my daughter to feel left out so we carry safe snacks all the time. Halloween, for example, I carry a sack of safe snacks and she trick-or-treats like everyone else. After each house we trade out something that she can’t have for something she can. She can do anything her sister and friends do with enough preparation!” — Brandi S. 2. “Stock up on cheap towels and millions of them. The easiest most stress free clean up for a middle of the night projectile vomit attack. Quick scoop up and mop and you are done.” — Kate M. 3. “I remember during a particularly bad attack I was tired of changing the sheets so I decided to just all sleep on a towels and gave her a towel as a blanket.” — Kailey B. 4. “Do a lot of research about foods! Learn all you can about substitutions in the kitchen, and familiarize yourself with every ingredient. Soy flour can be substituted for all-purpose flour, chia gel can be a great egg replacer, coconut flour is more absorbent that most flours, etc. Also figure out what ingredients pack the most protein, and how other ‘superfood’ ingredients can be incorporated (like chia or flax). Every FPIES case is different, so familiarize yourself with your own, through and through!” — Lori S. 5. “Baby wear when out in public if they are little enough to put random stuff in their mouth. Having your little [one] fail from something you didn’t even know they ate is horrible.” — Elizabeth M. –> 6. “Anything is possible if you plan ahead. We don’t skip anything. We don’t miss out on life. We always have ‘grab and go’ safe food on hand. FPIES is a rugged mountain, but, you might as well enjoy the views.” — Danielle C. 7. “ Try not to look at what your child ‘can’t’ eat but rather what he or she ‘can’ eat; if it’s sweet potatoes, there’s sweet potato pancakes, waffles, mashed, cubed, hash, fries, etc. Remember, you’re doing the best you can, and you’re the best parent you can be to your baby/child!” — Leigh M. –> 8. “Always keep a car kit of safe snacks and drinks. Always. Make sure you have enough to last for 24 hours if [necessary] because God knows when you may get stuck somewhere and not be able to find someplace with safe foods.” — Raechelle B. 9. “Don’t stop living your life. Go out and do the things you always have done. Go out to lunch or dinner. And take your child! Let them be ‘part’ of the experiences. Pack their food or formula! We didn’t stop and haven’t stopped in 12 years. He knows he is safe because we will always have his safe foods! He hasn’t missed out on family time yet!” — Denise B. –> 10. “It’s OK to be upset, cry, and get mad thinking about everything your child might miss out on. Then, start researching! My daughter still eats chocolate cake with frosting, pizza, ice cream, muffins, and many more things made with dairy substitutes made of soy, almond or coconut. It’s more work for me, but that’s OK because her smile when she sits down at a birthday party with a cupcake like everyone else makes it all worth it!” — Kendra J. 11. “Find something you love to do as a parent and make sure you carve out some time for yourself. Then, if you have one, do the same thing with your significant other. All of the worrying, stress, sleepless nights, cleaning up [bodily fluids], doctors visits, well meaning questions that leave you feeling raw — all of those things take a major toll on your own emotional health and on the health of your relationships. Even if it only two minutes a day…try to make time for yourself (something that I have to constantly remind myself to do).” — Brittany H. 12. “Try everything possible. My son stopped eating after a really bad reaction about 15 months old. He never ate [well] anyways and we were thinking he had a texture issue. Until I realized (at 18 months old) every time we went to my moms, he’d eat two to three [servings] every meal at her house, and he’d eat every one of his safe foods. Turned out, he wants to eat in a walker, not in a high chair or booster. In the last week, he has even been willing to eat in a chair, as long as it doesn’t have a booster seat. I’m wondering if he associated the reaction to the chair rather than the food. Prepare foods for the week in a day. It makes it so much less stressful on the day as you just do not have to prepare two or even three meals every meal to accommodate everyone. Never give up.” — Susan B. 13. “I had a bib embroidered with the words: ALLERGYALERTNO RICENO OATSNO CHEERIOSI have FPIES I used it for church. Saved a lot of time and stress for me. She also wore it any time we went into public.” — Beverly R. 14. “Always pack safe food with you, more food than you think you will need. Be it visiting in-laws, going to the park or flying on a plane. Once we were flying home from seeing some specialists, what was supposed to be a six hour trip with layover, turned into a 19 hour trip because of delays, much of the time stuck in the actual plane (with two little ones with FPIES). If I hadn’t have packed more food than I thought we would ever need for that plane ride we would have been in bad shape. I also learned that I should have packed my son’s bottle brushes and safe soap in our carry-ons so we could have washed his bottles properly, instead we did our best in airplane bathrooms.” — Brittany H. –> 15. “We have huge 12-inch signs that we hang on her stroller and carrier that say ‘do not touch: severe food allergies‘ and a little bottle of sanitizer attached. We keep her emergency kit with us always. But most of all, we keep her in her stroller that sits back enough that she cannot reach out and touch anything. We keep her out of reach, and make not touching her clear, in a kind manner. Living with FPIES and food allergies is different but not the end of outings.” — Bethany O. 16. “Ask parents what will be at birthday parties and make or bring something that will look similar. Vegan pizza I pack her for pizza parties and dairy-free cupcakes or soy ice cream for an ice cream party. Find safe restaurants that you feel comfortable with and then let them choose a night out so they feel like they have a choice in what they are eating. Even if it is just a vegan pizza place vs a hot dog with no bun. They enjoy having a choice since so often the food is prepared and carefully chosen for them. Share safe foods with the child’s class. Your child will feel safe at treat time, and other kids will get an opportunity to try a new and usually healthier snack that [many] of them [may] have never had, like chia pudding or soy yogurt.” — Kailey B 17. “It can be very overwhelming at times, but take it one step, not one day, at a time. Each victory has to be celebrated because sometimes they don’t come very often. Having a strong support system is also very important whether it is family, friends or online communities.” — Mel P. 18. “Don’t live your life in fear. Be careful and cautious but not paranoid. Teach your child to be a self advocate in regards to their allergies. Let your child live their life to the fullest and show FPIES who is boss.” — Erika L. –> 19. “Always have a hospital bag ready to go, exposure can happen fast. Plan all meals and outings ahead of time to allow for allergen avoidance and fun. Enjoy time together and find non food things to help celebrate occasions. Our FPIES children are warriors. Let them live and enjoy every day and be prepared for exposure. Enjoy the small things and keep moving forward.” — Krystal R. 20. “Don’t expect any doctor to know what it is or how to treat it. When you go to the ER for IV fluids, tell the nurse to please open a browser with the FARE website for the doctor before she comes in. That way you don’t have to tell the doctor what to do (which seldom goes well and wastes time).” — Tamara J. 21. “Be organized but flexible. Though FPIES can add many more complications to the already complicated life of a family, organization and the ability to roll with the ‘punches’ is key. We go into most situations with a plan A, B, and C (which is ‘Let’s see what happens and at least we will learn something!’). This disease is a marathon, not a sprint.” — Allisyon F. –> 22. “Read every label on everything that goes into their mouth, every time. Many products look similar but contain different ingredients, and manufacturers sometimes change the ingredients in their products.” — Amy H. 23. “Batch cook and freeze in small portions so you’re not cooking all day, every day. Trial shelf-stable foods in case of emergencies, loss of power and travel.” — Marett H. 24. “When you bake a birthday cake for your little one, cut the leftovers into single servings and freeze. Then they will always have “their cake” too at other birthday parties!” — Jennifer D. 25. “Stock blankets and towels as if they were burp clothes and wipes! And keep water bottles and plastic bags for cleaning up puke in the trunk of your car.” — Casey T. 26. “Get an allergy bracelet. If there are too many triggers to fit, use a company with a database and call center. In some situations a t-shirt is also helpful.” — Jamie V. 27. “Make friends with other FPIES parents. They will save you.” — Angie K. 28. “Pack food wherever you go! Make all your family and friends aware of what FPIES.” — Shelby L. 29. “Always be prepared for the worst but hope for the best.” — Jori T. 30. “Never leave the house without safe food. Ever.” — Catherine M. 31. “Plan ahead and then plan ahead some more. In addition to bringing my son’s food everywhere we keep extra emergency food in the diaper bag in case we are out longer than expected. When you find a shortcut, take it. Even if it is something you could make or that would be cheaper to make, take advantage of any prepared food you can regardless of cost!” — Heidi I. 32. “I always have my son’s ER letters and doctors documentation on me at all times. I also have all of my children’s emergency information on the Health Data app on my smart phone.” — Kate H. We want to hear your story. Become a Mighty contributor here .

33 Things Parents Do When They Have a Child With FPIES

Food-protein induced enterocolitis syndrome (FPIES) is a type of food allergy. FPIES is a delayed food allergy of the gastrointestinal system, which means a reaction may not happen until hours after a trigger food exposure. FPIES is most often diagnosed in infants and young children although school age children and some adults are living with this rare type of food allergy. Someone living with FPIES may react to one or two foods and some may have multiple food protein “triggers.” There are not medical tests that can determine which foods will trigger a reaction. The only way to know if a food is safe to include in the diet is through food trials. A diagnosis of FPIES can be life-altering. It changes the way a parent approaches food introductions with their baby and influences the way the family views food – at home and in social settings. A parent learns to be acutely aware of potential food allergy exposures in all aspects of the day’s activities. Sharing from the FPIES community, these are some of the things parents of children living with FPIES are doing because of the diagnosis that other people may not realize. 1. “FPIES isn’t a diagnosis for us, it’s an island. We live on this island isolated from family, friends and the community. We aren’t ‘anti-social.’ We would love to be at the next graduation party, BBQ, birthday party…but the risk is too great and the stress level too high for us to attend. So when we say, ‘Please stop and see us! Please come visit anytime!’ we aren’t being polite, we truly want company.” – Alliyson F. 2. “Thankfully our FPIES journey ended at 22 months; but when our first daughter had FPIES to dairy, soy, rice and oats, if we were visiting family or friends or a function, I would scan floors and surfaces looking for stray grains of rice, etc… Everyone hated it because they thought I was judging their cleanliness, especially when I was down on all fours picking up microscopic pieces of crumbs. I got told so many times I was creating the allergy by not letting her have small amounts of these foods. Unless you are an FPIES/allergy parent you just don’t get it.” – Louise B 3. “My daughter is 8 and still living with FPIES. We move a lot due to my husband’s job about every two to three years. I constantly have to research the areas we live. Finding new doctors, local restaurants and even grocery stores that offer the brands and things she needs. It gets exhausting.” – Amanda C. 4. “Wipe all the children’s hands and faces before the kids sit down to the shared morning tea I’ve provided. I’m sure their parents think I’m a germaphobe – but I’m a banana-phobe.” – Kellie L. 5. “I am still in the breastfeeding stage. My little one is 4 months and reacting through my breast milk. I donate most of the milk I end up pumping because unless I know it’s 100 percent safe (and getting to a baseline has been a real struggle for me) I don’t keep it.” – Nicole K. 6. “Making sure my son knows not to take food from strangers, other kids or anyone really unless I say it’s OK. He does a really good job of this since before I think he even realized it. Turning down foods shouldn’t be a sad thing, everyone always feels bad. I’m proud that he doesn’t make a big deal about it. There are plenty of foods he loves that are safe for him!” – Nicole B. 7. “Continuously learning the science and chemistry of food to make a better brownie or chocolate chip cookie or pancake or (fill in the blank) because with all the substitutions needed, they’re never quite as good or stay good for long, and he knows it even though he’s never had the real thing.” – Toni K. 8. “Every time my kids try a new food, my husband and I check our watches for the time. My kids both react at two hours post ingestion, and we always make sure to be home by then. When they make it past that, we do a little family happy dance.” – Carlee H. 9. “The stress, when it first started, of having no idea what was wrong with my baby, but knowing something was wrong – including the doctors who assured me it was extended colic.” – Kristi N. 10. “For every single newish food, waiting the two-hour mark for a reaction, wiping down and cleaning everything all the time, making everything from scratch with minimal ingredients to recreate typical foods, dreading each challenge where she has to be hooked up to an IV where you have to keep feeding her even though she might go into shock.” – Ilene C. 11. “I don’t let my son go fishing (his trigger is fish) because I can’t take the chance that something silly will happen and he’ll get sick.” – Nicole O. 12. “I give safe snacks to other kids (after asking their parents) so they don’t eat or share unsafe snacks with my little one.” – Hillary M. 13. “Checking labels on every box, package and bag – even ones that have been safe in the past.” – Heidi I. 14. “I always check if other children have allergies before offering food.” – Jane R. 15. “Helicopter parenting! It’s not a choice, it’s necessary to keep my son safe.” – Lauren B. 16. “We bought a camper for vacations so we can always have our kitchen and make our own food.” – Sara S. 17. “Pack a diaper bag for my almost 4-year-old so she has safe water and food wherever we go.” – Arathi C. 18. “We take our own food and milk wherever we go, even when traveling to another country!!” – Obone P. 19. “I don’t share food or drinks (even water) with my kids. Ever. I can’t take the risk of cross-contamination.” – Melissa M. 20. “We use wet wipes and wash our hands like it’s our religion.” – Ananda C. 21. “Bring little one’s food into food places with us (she’s old enough to eat anywhere we go).” – Mary W. 22. “Leave the park when we see kids eating on the play equipment.” – Jessie C. 23. “I work really hard so my son can experience a variety of fun foods. It looks like he’s eating ice cream, like a normal kid, but first I had to buy an ice cream machine, research recipes that might possibly work with his few safe foods, make a pudding out of his rice milk with flour and sugar, then cool it overnight and make the ice cream myself. Same with his bread. Same with his waffles. Same with his cookies. It’s important to me that he not miss out on what other kids are doing just because of the hand he was dealt.” – Janie D. 24. “It takes a lot of extra work, but it’s worth it. I remember making goat’s milk yogurt for my son (he is 34 now). Only thing was the other three kids liked it too – so I was always making another batch. Then his tonsillitis attacks started. With some help from a naturopath, he didn’t have to have his tonsils out. But he had to give up milk entirely.” – Dianne P. 25. “When you have FPIES to corn and multiple other foods, you can never go out to eat. No McDonald’s on a busy day, no pizza or hotdogs at a sports event. There is no stopping at a gas station for a snack on the road. You have to plan ahead for and pack every single bit of food or drink your child may need when you are away from home.” – Susie I. 26. “I think the biggest thing that people don’t realize is the pure joy and relief I feel when I find my 2-year-old son a new safe food. That look on his face when he tries something new and says “yummy,” that’s just priceless…the happiness I feel when he has a good day and can eat until his belly is full, when I know for sure that he can’t be hungry anymore, I can sit back and breathe. And then there is the pain I feel when he loves a new food and it turns out to be a trigger and he can’t have it anymore. People don’t realize the impact on pretty much every aspect of your family life.” – Anouk F. 27. “We take nothing for granted. Our health, the ability to eat at a restaurant, grocery shopping, play dates, a fun park or playground adventure, vacations, birthday parties, school functions and holidays. Every time we leave the house, we risk our son’s health. Every time we leave him with a caregiver, it is an exercise in trust and clear communication. This syndrome is fearful isolation, and we will never take normal life for granted again.” – Carrie S. 28. “Our youngest has outgrown her FPIES now, but she reacted to all grains, rice being the worst reaction. So we didn’t let our girls play with play dough, anywhere, let alone have any in the house, so there couldn’t be any risk of her putting it in her mouth and ingesting even the tiniest amount. We also limited our outings and play dates because it was so exhausting staying vigilant every moment – there was one day when we went to a friend’s house and her kids were playing with a rice sensory tub with some having ended up on the floor. I broke out in a cold sweat and nearly burst into tears trying to figure out how to clean things up and keep my little one out of harm’s way.” – Kim B. 29. “I take a Rubbermaid container and fill it with safe snacks and give it to the teacher to keep in class at the beginning of the school year. This way when someone brings birthday treats she doesn’t feel left out. A lot of the time the teachers do popcorn and movie Friday so I keep safe popcorn in her buckets for her as well. I usually do popcorn, cookies and ring pops so she has a variety.” – Amanda C. 30. “We never go out to eat because of the FPIES and severe IgE/ANA allergies. We go to the same resort for vacation every year because it’s close to home, under an hour away and has a kitchen. We avoid any food-related gatherings like the plague because we feel bad that our son can’t eat and has to watch everyone else eat.” – Christine M. 31. “Leave anywhere immediately if someone appears sick with snot or a cough…snot means my son won’t drink his formula that he already barely drinks. Being sick also means we can’t continue trialing new food.” – Skylar R. 32. “I use a cover for restaurant high chairs and shopping carts. I can’t risk exposure to dust from oats or rice.” – Susan W. 33. “I make sure I have snacks and meds on me at all times just in case we are out longer than we intended to be.” – Sara T. Thinkstock photo via Liderina.