32 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 families
find 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:
I 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.
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