Wednesday, March 26, 2014

FPIES: Food Selection.

Part two of my last post on food trials-how we choose the foods to trial.  Myra's second safe food was coconut, and I couldn't even count how many times I've heard (and still hear), "coconut??!?" Then I attempt to briefly explain how we landed on coconut as our #2.  So, here is the not so short explanation.  (Note: we will be seeing a nutritionist/dietician soon which will be a great asset to our food selection process and Myra's medical team as a whole.)

The goals/things to consider when choosing foods for a child with such a limited diet are as follows (in kinda-sorta order of importance but it's really just a balance):

Risk (for FPIES in general and based specifically on Myra's history)
Versatility (in cooking options and in forms of the food itself)
Textures and appearance
Availability (seasonal vs. frozen/canned, local foods)
Safety (foods appropriate for her age and ability level)
Whole picture/end goal (work towards actual recipes, meals we can all eat together)

Now for the more detailed version of that, including how we calculate some of those factors.  Our process has been adapted from that of another FPIES mom, Jamie V., so her ideas are cited throughout this post as "(JV)."  Remember, Myra still drinks a lot of her amino acid based formula, about 20oz of a toddler formula (Neocate Junior) per day, so she is still getting most of her calories and nutrients that way for now.

I start by analyzing Myra's current diet, adding her most recent passed food.  I go to the Nutrition Data Website and create a recipe that includes all of Myra's safe foods (JV).  This is an average.  So, for example, if she alternates between 1 cup of blueberries and 1 cup of peaches for breakfast every other day, I would put 1/2 cup of each in the recipe since that is the average.  Once I have an average amount of all her safe foods entered into the recipe, I click "Save & Analyze."  It tells me the nutrients in which her foods are high and low, so I can see what is lacking in her diet.  Currently, Myra's diet is lower in Vitamins A, D and E, Zinc, and Calcium.  I will keep those in mind when deciding the next food to trial.

Calories are important, so we keep that in mind when choosing foods.  Many of the really nutrient rich foods (spinach, for example) are lower in calories.  Again, it's all about balance.

This is the scary part.  We want to choose foods that are likely to pass and, therefore, avoid the trauma and setback of a fail.  There is a time and a place for the riskier foods, or even challenging foods that have failed in the past, but we want Myra to have a little more variety in her diet before we pick something risky.  We need safe foods to fall back on while she recovers in the event of a fail.  If she passes a riskier food (eggs or corn), it can make life a lot easier.  Anyway, we first look at this website which shows survey results for actual FPIES children and the foods they've tried and whether they passed or failed (JV).  There is no sure thing with FPIES, but a 99% pass rate vs. a 60% pass rate makes a big difference.  The sample size is also worth noting, 50% is different if it's 1 out of 2 or 100 out of 200.  We also have to consider risk specific to Myra's history of passes and fails.  Because she failed soy, green beans, and peas (all legumes-two out of those three with severe vomiting), we will be avoiding any legumes for a while.  For example, even though red beans have a 92% pass rate, we won't be trying them anytime soon.  Similarly, I use this website to look at the food families of her current passes that will hopefully point us to other foods in those same families that will likely pass, too.  It is also available alphabetically, so I can easily look up specific foods to see their food family. 

We look for versatility in both how the food can be used/prepared and in what forms the food is available.  This was a big part of choosing coconut.  It is available in flakes, chips, flour, oil, milk, water, and manna/cream concentrate.  As for cooking, the flour is obviously useful, oil can be used as a butter replacement, coconut milk as a dairy milk replacement (homemade ice cream!!), and the manna can also be used to replace butter and to make frosting.  What's more, coconut oil has a ton of great uses outside the kitchen, like as a skin moisturizer and soap, so we have no concerns about Myra drinking her bathwater or licking her lotion (kids love to do both...).  Did you know Burt's Bee's baby wash has soy in it?

With a limited diet and a developing palate, we want to make sure Myra is getting a variety of textures.  Some children who are on very restricted diets end up having texture aversions and actually go to food therapy to overcome that.  When we first started solids with Myra, we followed the baby led weaning model and skipped purees.  She had so much fun with food!  When she started getting weird rashes, we took a more cautious approach and reverted back to the guidance of a new food every four days.  We're on WIC and it was easier to just use the purees we got.  Within two weeks, Myra had two repeated/projectile vomiting episodes and we eliminated all solids until we could get in to see the first allergist.  With all that lost time on Myra exploring solid foods (the saying "food before one is just for fun" was so not true for us), we noticed some issues with texture when we ultimately started solids again.  Myra would eat her pureed peaches, but would chew on then spit out any solid form.  This is how we chose potatoes.  There are many texture options for potatoes (mashed, boiled, baked, fried, chips, CheeCha Puffs-a favorite, plus flour/starch). Appearance also has a role.  We're still trying to ensure that eating is a fun experience for Myra, so having fun colors/shapes/textures on her plate (who am I kidding, we don't give her a plate...her tray) is worth something, too.

We need to make sure we can actually get the food.  Mango has a pretty high pass rate (89%), but it's not always easy to find.  We prefer fresh, but if we can find something that's available canned and especially frozen (less additives), that's a bonus.  I like to stock up on foods once it's safe for her so we always have stuff on hand she can eat, and choices for her, too (canned or frozen peaches, for example). (Some tips from JV here, too)

Myra's allergist has been very diligent about reminding me to be mindful of Myra's age/ability when giving her new foods, even foods he suggests.  So, he suggested pork, but it's my job as the parent to make sure it's prepared in a way that is safe for her to eat (choking risk, mainly).  This might be less of a concern if we had been able to continue with baby led weaning, but it is what it is.

Big Picture
Of course, the long term goal here is to get Myra on a 100% food (no formula) diet that consists of "normal" foods and recipes, ideally eat together as a family, etc.  So, things like eggs will be very helpful in preparing "normal" meals like breads, pancakes, muffins, and many other baked goods.  With her current safe foods of peaches, coconut, potatoes, and blueberries, there are only a limited number of "recipes" I can make-there are some,  just not many.  It would be nice to be able to use her safe foods to make different meals for her, not just the same individual food items day after day.  Luckily, she doesn't mind so far, but that's the long term goal.  She will be on formula for quite a while, but the more calories/nutrients she can get from foods, the less formula she will need.

And, of course, there are other little things to consider like: if this food is available canned, is that version safe (so many packaged food items have the most bizarre things added, like most canned peaches contain pear juice and other ingredients-look at your labels sometime), is it messy (blueberries stain, but she loves them so oh well), is it available in freeze dried form (Myra loves those and they're less messy!), does it make a good finger food (motor skills-babies/kids learn a LOT more than how to satisfy hunger by eating), is it easy to eat on the go (we like to do things and have to bring her food everywhere we go), etc.  I probably never stop thinking about food, but luckily it must be mostly subconscious by now so I can actually accomplish other things.

Now that you know our process, here is the quick version of how we chose Myra's first few food trials:
Peaches: After we switched Myra to formula, she immediately began struggling with constipation.  She had previously had peaches, they have a high pass rate, and help prevent constipation-perfect.
Coconut: Already explained, but mostly for the variety of forms (milk, flour, oil, manna, flakes, etc.) plus the actual nutrients/healthy calories.
Potatoes: At this point we were getting more concerned about texture issues since she was still refusing any solid form of peaches and only eating the purees.  So, texture variety and ability to mix other foods into mashed potatoes in the future won.
Blueberries: Myra's allergist suggested a berry, they're a good finger food, available frozen.
Spinach: This one hopefully passed, but we had some really goofy night's sleep during the trial, so we finished the two weeks but put it on the back burner for now and we'll revisit it sometime.  Anyway, we chose it because of its nutrients and high pass rate (obviously not for its calorie content!).
Pork: Myra's allergist suggested this as a high pass rate protein (86%).  Trevor comes from a hog farm family (availability!!) and it comes in many forms (bacon, chops, ground, bacon, ham, steak, bacon...).  Meat broth is often used to add flavor/calories to recipes and to promote gut healing after a fail/illness.  This even gives us a gelatin we can use.  We're not wasting any part of the pigs, here!
Cocoa: I wanted to be able to make my kiddo treats.  Cocoa can be used to flavor things and I have found two brands of chocolate that are only cocoa and sugar (Enjoy Life and Amanda's Own).  So far, she doesn't love it (I don't like chocolate), but it's an option now!

Note: We have since met with a dietician who backed up our process and provided guidance on nutrition goals, toddler serving sizes, nutrients, etc.  Although we have a great system for figuring this out on our own, meeting with her is an important part of food selection for us.

I am 90% sure this is in my head and not intended, but I have sometimes felt questioned about how we pick foods for Myra.  So, yeah, no need for that-it's alllllll under control.  Like, totally 100% under control.

A big thank you to my fellow FPIES parents, Myra's allergist, and resources like IAFFPE and The FPIES Foundation for all the information and support we have received!  We would not be making such educated decisions without that wealth of knowledge and experience.

Click here for more details about Myra's foods and other FPIES posts
Click here for the post about our journey to Myra's diagnosis

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