Food vs. Quality of Life

Deciding to pull a food when it hasn't been an 'obvious' fail with a classic FPIES reaction or severe symptoms otherwise is one of those zillion shades of gray that exist in dealing with this beast.   We need to find safe foods.  But what what does safe mean?
Safe to me means that my child is healthy and happy; thriving in every way.  I just can't bring myself to believe that forcing consumption of a food that only makes her mildly miserable is good for her... even in the long run... even if its a particularly nutritious food.  We've hit one of these murky roadblocks with quinoa (I guess my quest to rule the world will just have to wait..).
I've heard the phrase 'pushing through symptoms' quite a bit since our introduction to the FPIES world.   Essentially the idea is that you might have an uptick in reflux, sleep disturbance, diarrhea, spit-up, and the like then come back down the other side after a certain amount of time (days, weeks?) and tolerate the food.  I agree with it to an extent.  When we first introduced Neocate, we did see all those symptoms I just mentioned for about a week or two.  She then started to show signs of the symptoms easing and actually doing much better than before formula.  If we had pulled formula right away at the first sign of reflux, we would have missed a very good opportunity to get her nutritional needs met.  Solid food is proving to be far more complex.  Rice and Oats gave us 'classic' FPIES acute reactions.  Banana and Carrot gave severe sleep disturbance, mucous diarrhea (followed by blistering diaper rash), and reflux among other things.  The symptoms progressively were getting worse and it seemed to be as cut and dry as FPIES can be that the foods needed to be pulled.
Quinoa has us in a strange head space.  Livvy's poop wasn't 'normal'... but was it just the extra fiber and concentrated protein?  She got hiccups a few times... just a fluke or slow-burn reacting?  Cheeks were a bit more pink... but, then again, she IS a redhead with pale skin... symptom or negative sign?  Naps were not going well at all .... 1-year-old attitude or sleep disturbance?  Occasional fits of inconsolable crying ... teething pain or cries of tummy pain?  By themselves, these things seem benign enough.  All together at the same time the cumulative effect had to make me wonder.  So we've been holding back on quinoa and all these 'meaningless' symptoms essentially disappeared.   Dang it.  I mean, its good that these things stopped.  But its so frustrating that she wasn't overtly reacting to it, but wasn't actually tolerating it either.  Quinoa is such a  nutritious food, and having a flour opens so many doors as far as cooking goes.  But I can't keep subjecting her to something that's just plain making her sad and not feel 100%.   Right? ....... Right?!?
The last thing I want to do is be too overly protective and pull foods that would be good for her (nutritionally) for her to consume.  But I have to consider her quality of life also.  Elemental formula is meeting her basic needs, so its not like we are at risk in that respect.  She's 90th percentile for weight at last check, so we are far from failure to thrive territory.  Liv deserves to be happy.  There must be other foods that we can fill in her diet with that will allow her to both be nourished and happy.  So we're pressing on, but we will be doing so without quinoa.

It was a good day!

Sometimes the FPIES clouds part and allow you to have a 'normal' day with your child.  Our little Livvy is officially a one-year-old and ... wait for it...

WE HAD A CAKE! 


Ok, so it wasn't exactly what most people would consider cake.  It was a quinoa muffin recipe that I poured in a cake pan and frosted with homemade powdered sugar 'frosting'.  But it looked like a cake!  And we put a candle on it and sang!  She got to dig in and make a big ole mess!  Hurray!

Its always a special thing for your baby to have their first birthday party.  Its just that this particular little party was just a little bit sweeter for me.. and it wasn't because of the sugar ;)

My heart hurts

Today is such a lovely day outside.  Bright blue skies, white wispy clouds and birds chirping.  My husband is off work this week and we decided to make a family run to Home Depot for some flowers to brighten up our neglected flower beds.

...Let me back up, though, about two days.  Its been over 2 weeks since Livvy has consumed any carrots. We 'passed' after two weeks of trial with a two-day break I built in the middle.  It seems that her reactions really are obvious after a break.  I thought two days was sufficient.  I was wrong.  And looking back on our other bad outcomes the time between consumption of a particular food was longer than 2 days.  Its been more like a week or two.   Perhaps that's how we'll have to work trials.  Which, unfortunately, will only allow us to trial about one food per month.... and that's assuming there's no bad reactions that her gut has to heal from.  So getting back to what puts me at today...  two days ago I started giving her carrots again thinking everything was fine.  The night before last was a rough one.  Liv was up about every 90 minutes overnight and restless in between.  Assuming it was a teething issue, she got carrots again the next day.  Yesterday her overall disposition was OK and poop looked maybe a bit 'off' but not alarming.  Seemed in line with my assumption of teething symptoms.  Overnight last night was no fun.  NO FUN.  Restless, couldn't stay asleep and the poor thing had fits of inconsolable crying.  When she'd finally get to sleep she would have her eyes clinched shut and she was whimpering.
So this morning she seemed at least less miserable, but I could tell from the two poopy diapers this morning carrots were going to be a no-go.   Livvy's cheeks tend to be a good barometer of a reaction as well.  They get very bright red and break out in bumpy patches.  You can watch her over several hours as her cheeks get brighter and brighter like somebody is turning a dial.   I noticed that we were starting to see some red cheeks by late morning and knew we were headed for trouble.  Liv had a bit of spit up randomly as well.  Still, she was acting fine at the time so we decided to go to Home Depot and let L pick out some flowers and try to have a decent family morning.
We got through about 10 minutes of shopping and the poor baby irrupted.  She started crying in the store and I knew she must have pooped (again).  Five minutes later, we were figuring out how to leave the store to get to the car and change her.  The hubbs took the girls out to the  car and I ran through the check out with our couple of things already in the cart knowing we probably were going home at this point.  By the time I made it to the car (MAYBE 10 minutes after she went) Livvy was screaming.  SCREAMING.   I'll spare you the gruesome diaper details, but it wasn't good.  That 10 minutes with that evil carrot-containing poo against her skin left her with patches of skin that were just gone.  Just bloody holes where her skin had once been.  What wasn't bleeding was raised and welted.  
My poor baby was screaming and crying so hard I thought she was going to hyperventilate.  She was just writhing in pain from that diaper change.  She was screaming so violently she was shaking.  My heart was just aching.  My baby hurt so badly it was taking her breath away and I had to make it worse to clean her off.
The next few days will be long.  We will battle mucous diarrhea and blistering diaper rash.  I can already tell her reflux is flaring.   Livvy won't sleep well.  She'll be exhausted on top of everything else.

I'm just so sad.  I was really holding out hope that we were going to be relatively 'lucky' and have our short-ish list of triggers and be OK with everything else... instead I think we are falling into the category of just having a short-ish list of safe foods and having everything else be a fail.

I try and maintain optimism, and look at the bigger picture.  Heck, I try and maintain humor.  Not today, though.  Today, my baby is hurting and my heart is hurting right along with her.

Are you one of them nut jobs?

You know those specials on TV every so often... the ones with the doomsday stockpiles of food, supplies and generators?  Now, no offense to anybody, but c'mon.  Most people sort of just cock an eyebrow and think to themselves, 'oh they're one of those nut jobs'.    And OK- I was one of them with the eyebrow doin a dance in slight disbelief that somebody would even think to stockpile like that.  

Well.  Well... um... I think FPIES has made me sing a different tune.  

Our food trials are in full swing and I'm making plans to make larger batches of things that I can freeze, and ordering in bulk from Amazon.  We're researching chest freezers to put in the garage, because of course, I can't fit as much as I need to in our little side-by-side fridge.  There is hardly anything that we will be able to safely use that's ready-made.  I just can't handle the fear of cross-contamination issues.   Its hard enough to find single ingredients that fit the bill of being 'safe' that I can use to cook things from scratch.  

There is a certain sick calm that washes over me seeing my growing stash of shelf-stable Livvy-safe foods.  Really, I don't think its at all normal but I can't help myself.   I have nightmares of a massive natural disaster or industrial incident that will prevent the delivery of food and then what will we do?  Is it highly unlikely?  Yup.  Is it still possible?  Yes, indeed.  Currently there is food storage overflow in the storage under our staircase, but its only a matter of time before we have a full-scale weirdo-ingredient grocery store in our garage.  Complete with freezer section!  

Ok, so then I got to thinking-  what happens when the power goes out?  I will likely have HUNDREDS and HUNDREDS of dollars worth of food in the freezer and fridge that will go bad if the power is out for an extended period of time.  Obviously, its time to purchase a generator.  We live in an area where an 'act of God' is highly possible so this is not quite so far fetched a thought, I suppose.  

There's also the fear that we will need to go out of town on short notice.  There is no going anywhere without thorough packing of essentials.  What if when we get there we stay longer than planned?  I can't get a lot of this stuff in a normal grocery store.  I'll have to take a serious load of groceries and pre-cooked food with us just in the event a road trip gets extended.   This requires having a serious load of groceries already at the house at our disposal.  See where I'm going with this? 

We're adding more and more solid food each day, but there is still a vital need to remain on our elemental formula.  Nutritionally, what she is able to get from the few 'safe' foods is not anywhere near adequate.  Not to mention, we don't have a 'milk' available at the moment.  Dairy, rice, and soy are a BIG FAT NO, so we'll have to trial coconut or hemp or the like at some point.  I've hoarded a couple extra sample cans given to us from the allergist and our monthly order for formula is on the side of caution so as not to run out.  We have a can or two or three at the end of the month extra.  Trying to build up a supply of formula for a rainy day as well.   We may end up purchasing some to have a stockpile of sorts, but even the 'discounted' price from the manufacturer is $138 for 4 (very small) cans.  We use upwards of 19 cans per month.  I am terrified of being without formula.  We are completely at the mercy of shipping to get this stuff.  Having something happen in the world that would interrupt this would be devastating.  

So if you ever happen to stop by the house and see what looks like a bizzare version of a Whole Foods isle in the garage...that's why.  

See?  I AM one of those nut jobs!  Thanks, FPIES.  Thanks a lot.