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!)
- 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).
- 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