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

A Mom-Inspired Food Allergy Journal

Here, at The FPIES Foundation, we love food journals!  You can find a page in the FPIES toolbox dedicated just to food journals and we are inspired everyday by the food journals you have created and have shared with us.  We have shared designs in the past, you can revisit those in this blog post FPIES Tools: Food Journal's for Food Allergies. Today, we share with you another amazing design. 

Inspired by her daughter and frustrated by the lack of food allergy journals specific to her journal needs, Maria, a mom of a child with FPIES, designed her own food allergy journals.  Maria has given us the opportunity to share a little about the inspiration behind her design with you. 

What inspired your food allergy journals?

I am a researcher by training-- I am used to planning and recording experiments. I learned a long time ago that different ways of recording and presenting data will show different trends that will help you figure out the conclusions of an experiment. At the end of the day, that’s what we do with a food challenge: we hypothesize that our child’s body is going to tolerate a new food, we plan our experiment (amounts, frequency and form of cooking), record the results (symptoms or lack of) and draw our conclusions (they can or cannot eat the new food yet).

I tried every type of store bought planner but nothing was set up just the way I wanted. Some of them lacked space for writing symptoms because they focused on the food journal part and left little to no space for symptoms. Others made difficult to write foods and symptoms side by side, and everything together was confusing (to me). It was particularly difficult to record overnight symptoms. So I made my own.

How does this paper version differ from an online version?

This paper system is helpful for doctor visits because all of the information is together, and you don’t need to depend on an internet connection to access what you need during an appointment. 

Also, a paper system doesn’t get deleted. It seems obvious, but when your google calendars, nursing, sleeping logs and photo albums of the last four months get deleted by little toddler hands, you realize how important it is to have data in a format that cannot be deleted.  When this happened to us, all my data was supposed to be stored online, but after downloading the apps I had been using again, they weren't.  I had to face the reality of never getting my records back. Then, after this happened, we found ourselves trying to figure out which foods were causing a reaction. Losing the last four months of data was critical. I promised myself-- never again. 

What types/styles of journals do you have available?

At the moment, there are only two types:

1.  The “Food and Symptoms Journal”, and the 
2. “Food Challenges Planner and Tracker".  

There is also an option for a Bundle package. 

Please note that some symptoms pictured in this journal example may incorporate symptoms that may be related to other types of food allergies or may be related to other conditions.  

It is important to discuss with your child's doctor(s) any potential symptoms notable to your child's individual needs when your child is trialing a food.

What are the differences between the journals?

• The "Food and Symptoms Journal" includes the notes/activities inserts and a summary of symptoms at the end of the month. This is offered in two formats: pre-printed symptoms (which are my personalized list) or blank listing. 

• The "Food Challenge Planner and Tracker" is a year planner to plan for challenges and pages for writing down ideas for food challenges. For tracking challenges, you have a 24 hours/14 days tracker followed by pages to write down the outcomes. The outcomes pages are divided according to food groups. This is also offered in the two formats with pre-printed symptoms (which are my personalized list) or blank listing. 

• The Bundle has both of the Food and Symptoms Journal and the Food Challenge Planner and Tracker plus an additional file for a Medical Information Binder which allows you to write down your notes for every doctor appointment. With the bundle, you not only get an extra file but also a discount.

You mentioned a Medical Information Binder, what do you recommend to keep in the this binder? 

I keep all of the lab work, the ER letter and notes from every doctor appointment and ER visit. One strong suggestion I have is that you write notes of any doctor visit soon after, so that you can remember what was said and what actions are to be taken.

The file for medical information and doctor visits notes has six pages and again, you can print as many notes pages as you need.

Do you recommend this for both new food allergy parents and ‘veteran’ food allergy parents? 

I think it is useful in different ways to different people. Parents new to this overwhelming syndrome have a place to start. It is easy to follow and does have clearly labeled sections, if they choose that option. On my own personalized one, there is an extensive list of symptoms, but there is still additional blank space to write down additional individual symptoms.  Parents might want to customize the symptom list specific to their child, so this is best with the blank journal option.

Both options are easy for other people that might take care of the child temporarily and are not familiar with a recording system (i.e. a nanny or a grandparent). My child's daycare has found that it’s easy enough for them to use, and it has been very useful for me to have a journal that can be used at the daycare.

What do you get when you purchase?

When you purchase either the Food and Symptoms Journal or the Food Challenge Planner and Tracker, you get the corresponding file and instructions for easy printing. If you purchase The Bundle, you get three files (the Food and Symptoms Journal, the Food Challenge Planner and Tracker, and The Medical Information Binder) and the printing instructions. I am just one message away if someone needs further help with printing!  

The “Food Challenge Planner and Tracker” file has 23 pages. You can print as many additional pages as you need.  If you printed it all at once, the Planner is 200 pages long (approximately) and it includes two pages for the activities/notes that can be printed as many times as needed (it has a faint gray line in the middle for easy trimming). I say approximately because one of the features that the journal offers is that it starts on the same month you buy it. Don’t you hate when you need a planner in the middle of the year and you have to leave blank the other half of the year? I do, and I also think it’s a waste of paper. That’s why the “Food and Symptoms Journal” is updated for every month. For example, a journal bought in April 2017 will include the pages from April 1st 2017 to March 31st 2018, plus the insert pages. Therefore, depending on how many weeks each month has, there are slightly more or less than 200 pages. 

What kind of binder do the downloads fit in to?

The Food and Symptoms Journal is best for letter size and a4 paper and binders. You can always print in a different paper size and resize the printing, although there will be some empty space at the bottom and the top. There is blank space along the inside of the pages for hole punching. I have tried the pages in a 3-ring binder as well a disc-bound system. Both work beautifully (although I personally prefer the look of the disc-bound system). In any case, a 1.75” or wider binder will be needed for The Bundle. Please note that both the a4 and letter size will need 11 discs if you choose a disc-bound system.

Remember– whether it is written in a spiral notebook or with a computer program, the key is making it work for YOU so that it can be best optimized as another tool for the toolbox.

Need more tools for your toolbox? For more tools and resources for day to day FPIES management, be sure to check out The FPIES Foundation's Toolbox today!

This post is written interview with Maria Torres, food allergy mom. You can find Maria's Etsy shop here: https://www.etsy.com/shop/MODdesignsStudio