Date Night & Alpacas.

Just a quick post about our weekend.  On Friday night, Trevor and I headed to Oceanaire in Minneapolis for a date night.  My dad had the easiest babysitting job ever and Myra behaved very well (she slept the whole time he was here).  We were there to celebrate my brother-in-law's birthday (Oceanaire is definitely not in our 'regular night out' budget, but it was a good excuse to use the 'very special occasion' budget).  It was great to get a night to ourselves, enjoy good food and wine, and good company. 

 

 I got the Hawaii Swordfish

Trevor got the Bigeye Tuna

Rhya and I shared Key Lime Pie

Then on Saturday, Myra and I headed to the Minnesota Alpaca Expo in town (while Trevor slaved away in his study den).  Myra is getting pretty excited about learning animal sounds and her default is "woof woof" so that's what she had on repeat as we walked up and down the aisles of alpacas.  We ran into some friends and family there, too, so that was fun.  (Mostly fun, until a cousin got trampled by an alpaca...but she was okay, scared, but okay.)

 

Children's Museum Fun.

Today we went to the Children's Museum of Southern Minnesota with Mari and her girls.  Until last weekend, I didn't know Mankato had one. 

It was easy to find with free and easy parking-my kind of venue.  Myra had fun exploring and the big girls loved showing her all the cool stuff the museum had to offer.

A cool treehouse thing with a ramp and rock climbing wall to get into it.  Once up, there is a pulley system basket...

 

...a bridge...

 

plus two rooms, and stairs down to...

 

a fun tunnel system.

 

Foam blocks!

 

There is a basement with more fun.

A water play room

 

 

Some pretend areas like a quarry, a grocery store, a pizza place, and...

 

a veterinary clinic.

 

Oh, and a dress up area with a stage!

(Yes, Angie, I'm wearing a tutu.)

 

You have to bring your own cute babies, though.

 

Only $6 to get in (phew! Myra had just enough money...didn't actually plan that for this photo, but sweet.)

 

There is more not pictured, plus they're working on a very cool new site!  Myra is worn out and fast asleep now.

 

 



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):

Nutrients
Calories
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.

Nutrients
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
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.

Risk
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. 

Versatility
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?

Texture/Appearance
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.

Availability
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)

Safety
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.

Miscellaneous
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

FPIES: Food Trials.

(The link colors are temporarily goofed up on my page, click on the title of this post and that should fix itself until I get the actual problem fixed.  Sorry, folks!)

We get asked questions about food trials a lot.  Since most people are not familiar with FPIES, it is not surprising there are many questions.  Of course, before her diagnosis, I knew nothing about it either.  Thankfully, I/we have been able to learn a lot in the past few months!

Since there is no blood/skin test for FPIES like there is for IgE (traditional) allergies, it all has to be done by trial and error.  So far, Myra's most noticeable symptoms have been vomiting and sleep disturbance (PS-I hate calling it that because it's such a nice little way to describe the HORRIFIC MISERY-for real- that happened in two different installments before connecting the dots to FPIES), our trials are focused on those two symptoms.  We do look for other things like rashes, gas (like bad, painful, room clearing gas), other pain symptoms (banging her head on her crib, forceful scratching of her face, etc.), but those are usually secondary to the first two symptoms. Remember, FPIES=Food Protein Induced Enterocolitis Syndrome, so the pain she has is, as far as we know, the same as a colitis flare up, but in her entire digestive tract.  I know people with colitis and thinking about my tiny kiddo suffering through that same pain makes me so sad!  Click here for more info about her symptoms.

We created our trial system ourselves after talking with Myra's allergist and some other FPIES parents I trust.  Just like with any other topic, there is a lot of information on the internet, some of it good, some of it bad, some that fits with your priorities and values, some that doesn't.  So, based on the information we gathered and Myra's symptoms specifically, we created what we think will work best for us.  The overall timeline of two weeks and starting in the morning at first was suggested by her allergist and we took it from there.  Thankfully we have had more passes than fails (almost all passes, only fails have been "questionable" and nothing "major") since starting official FPIES food trials, but once we have a better idea of what her fail pattern looks like, we will hopefully be able to shorten the trial a bit.  For now, we are playing it safe.  It's working and we're chugging right along, so we're fine with it being a bit on the long side (two weeks when we could maybe get away with one week).

For those of you who get lost in my ramblings, the main points of the trial are: start on a day we are best able to monitor her for a few days, start small and gradually increase, start in the morning, take a break in the trial, make it long enough to hopefully see both acute (vomiting, diarrhea) and chronic reactions (things like sleep disturbance/pain). 

Myra goes to daycare once per week on Wednesdays.  So, we always start trials on Thursdays.  That gives me/us the most time to be with her 24/7 at the beginning of a trial to see how she is doing.  If for some reason we can't start a trial on a Thursday (illness, plans that might really throw her off and confuse symptoms, etc.), we wait until the next Thursday.  Better safe than sorry! Especially after our very confusing sickness after her very first day at daycare.

On day one, we give her a very small amount of the new food, the equivalent of about 1 teaspoon, right away in the morning.  FPIES is a delayed reaction allergy of the gut, meaning the acute reactions (vomiting for Myra) don't happen for 2+ hours (usually about 6 hours for us) after ingestion.  If a reaction is going to happen, we would rather it happen in the early afternoon than the middle of the night.  On at least one occasion (pre-diagnosis), Myra was vomiting in her crib for who knows how long before we realized it-it was smelly and disgusting and we felt terrible for her.  So, on day one of blueberries, I just gave her 2-3 blueberries.  For potatoes, 2 baby spoonfuls of her safe mashed potatoes recipe.  The rest of the day, she just gets safe foods and her formula.  Day two: about 2 teaspoons in the morning.  Day three: about 3 teaspoons in the morning.  If there are no major concerns in the first few days, we start to get a little more liberal with the amounts.  For us,  during those first few days we are mostly watching for vomiting.  It is unlikely we would notice the sleep issues so early as the chronic reactions tend to take a bit more time to build up.  And, of course, the vomiting could happen at anytime during the trial, not just right away, but we want to increase the amounts in such a way that would actually show us those chronic reactions at some point during the trial.  Anyway, on day four, we will usually just let her have as much as she would like in the morning (within reason, she would have eaten a whole container of blueberries if I let her!).  If that goes okay, we add a little bit with lunch for a couple days.  If there are no big concerns by day 6-7, we give her as much as we can for breakfast, lunch, and supper.  [If we end up with a vomiting reaction fail at some point, we will definitely reevaluate our trial set up based on when the vomiting occurred.]

Curveball, some babies do fine on a food as long as they are fed that food consistently.  If they take a break from it, they may have a reaction upon reintroduction.  Not a big deal when they're only eating four foods anyway, but once they more safe foods (hooray!) it's impossible to feed them all of their safe foods every day or two.  So, we made that a part of our food trial.  Day 8-10 is a break from the trial food and she just gets her safe foods.  On day 11, we start the food again, but only in the morning.  We aren't quite so conservative with the amount, but still try to keep it pretty small that first day after the break.  If day 11 goes fine, we're just go big for days 12-14 in hopes we're in the clear for the barfing and just hoping to see if she's having pain (presumably the cause for the sleep disturbance). 

If all goes well after day 14, we call it a pass and start over with another food the next day!  For the time being, we will be constantly trialing foods unless we have a good reason not to do so since her diet is so limited. 

Curveball number two: making sure Myra actually eats the food.  So far that hasn't been terribly difficult, but our current trial (pork) started out a little tricky.  I cooked ham steak in the crock pot with a can of peaches.  Day one went fine, but day two she was not interested.  With all this drama surrounding food, we try so hard to make eating fun, because it should be fun.  However, during a trial I need to make sure she actually eats enough of the food for it to count.  Myra has recently decided she is too cool for pureed food, so hiding stuff has become a little more challenging if she won't just eat it plain.  When she wouldn't eat the pork, I pureed it with peaches-refused.  I made it into a smoothie with a TON of blueberries and I think she ate enough for it to count, but I knew we'd have to try something different the next day.  She loves her crunchy CheeChas and freeze dried peaches and blueberries, so we decided to switch to bacon (still pork).  She wasn't so sure at first, but by today (day 3 of bacon, day 5 of pork in general) she was having fun with it.  She ate some on her own at first, then wanted to feed it to me.  So we took turns feeding each other bacon (sometimes being an FPIES mama is HARD, but sometimes you get to have a baby feed you bacon!) and she HAD FUN EATING!  We all take things for granted every day, myself included, but watching my baby (toddler, I guess...) enjoy eating new foods is not one of those things.  Fingers crossed for another successful food trial!

As for how we keep track of all of this, I made a Google form about a month ago.  We can access it from any computer and have a shortcut for it on both of our phones and my iPad.  We fill it out throughout the day with the following information: how many times she woke the night prior (frequent night wakings as one of the chronic symptoms), which day of the current food trial it is, how long her nap was (short/no naps=same idea with the sleep disturbance), how many ounces of formula she drank (need this for WIC/insurance to get formula covered), what she ate (obviously most important for the food being trialed, but eventually we will meet with a nutritionist who will want to get a good picture of her general diet and, graphic: helps us pinpoint if food is going through her system too quickly=diarrhea/digestion problems), description of her bowel movements (oh, joy), meds given/dose (if we're suspecting teething causing symptoms or to see if she's reacting to a medicine), height/weight when checked, temperature when checked, noting any vomiting, diarrhea, face scratching, hiccups (some people say they notice those with fails, not here so far), whining/crying out during sleep, audible farts (they're loud and not normal!).  We also have a box for when we open a new can of formula (so we can see how long they last us) and a section for general notes.  Then Google puts it all onto a nice spreadsheet for us (TREVOR LOVES SPREADSHEETS! It's a sickness.) so we can access it if/when we need it.  It sounds intense, but it really takes about 10 seconds after a diaper change/nap/whatever to quickly enter it and hit submit.  We used to have a notebook that went everywhere with us, but that got old quickly and, honestly, we only need to look at this if we're trying to figure out a fail pattern, making sense of an illness (the temp tracking has been helpful when Myra was sick a few weeks ago), or "reporting" her formula intake to WIC/insurance.  Out of sight, out of mind, less clutter.

For those of you reading this and thinking, "holy cow. that is nuts. I couldn't pay that much attention to food amounts, symptoms, everything." You're right, it is nuts.  Doing all this and being paranoid any time food is around makes me feel like a crazy helicopter mom, but we have no choice.  The alternative is messing with Myra's health, lost sleep for all of us, major stress for all of us, confusion (did she get a crumb somewhere? was is it the pork?), not worth it.

I hope that helps make sense of our crazy food trials!  Fingers crossed we don't have any fails, but if we do, I will be sure to update with how that affects our trials.  Because failure is still progress, right? ;)

Click here for my post on how we choose which foods to trial/avoid.

Click here for our updated, faster paced trial method.

Blueberries!

Short post tonight. I know I will inevitably post the stressful stuff relating to Myra's FPIES, so I will try to post the good news, too.

Last week we finished a two week trial of blueberries. Myra loved every fiber filled, blue staining bite and no issues! Other than some very blue diapers, that is.  In fact, she slept 13 hours straight on the last night of the trial.  Hooray for another safe food!

 Signing for more!

First smoothie!