Corn: The Prequel.

I have a burning suspicion right now.  And, as much as I like to be right most of the time... I'm really hoping I'm wrong on this.  There have been many unanswered questions with both of my girls and I believe the answer may come down to one word.  Corn.

This is Liv's FPIES blog, but I feel the need to expound here with L.  Bear with me, as I back up a few months.

Sometime following her third birthday, we re-trialed dairy with L and had it be a complete pass.  This, after having severe intolerance for the years prior.  I've talked briefly here about it; the couple of really exciting things we've been able to do now that she's enjoying a 'normal' diet.  Now, it was in the fall that her behavior really started getting extreme on occasion.  Assuming this was fallout from the entrance of a new sibling along with the recent homecoming of her Navy daddy, we just went with our new little discipline problem and dealt with it the best we could.  Fast forward to the past couple of weeks.  I've been putting in some serious computer time searching for the corn intolerance google needle in the haystacks of the internet abyss.  Seriously, if I thought there was little information available for FPIES there seems to be even less for corn allergy and intolerance.  Nonetheless, what has been written has been read.  While Liv's situation started making more and more sense... I started having a burning feeling in the pit of my stomach.

These stories talking about older kids' behaviors with corn intolerance or allergies sounds disturbingly similar to MANY things with L.  Oh dear.


Allow me to go down my list of goings on that seem to back up my suspicion.   First of all, it would make perfect sense that if this is corn allergy related, things went downhill in the fall.  You see, when she had to be dairy-free, there was very little pre-packaged food and convenience things that she could eat... these things are LOADED with corn ingredients and derivatives.  Being able to consume dairy opened up the possibility for the exhausted FPIES mommy to cut a few corners while I was nursing a a baby round the clock... it also pumped L full of corn.  When I say 'behavioral problems' I mean the kid goes off on tangents and is just completely irrational.  She will start screaming and/or crying for no apparent reason and can't tell you why she's so upset either.  Secondly, she has always been frantic when I've made her use hand sanitizer.  Goes ballistic and tells me it 'burns'.  Now, I just assumed there were cuts on her hands or something and she was being dramatic.  And maybe that's all it is, but it might not be.  Because hand sanitizer is alcohol... from corn.  For another thing, she has also been psycho at bath time getting soap anywhere near her face- says it burns.  It was tear-free baby shampoo.  It really shouldn't have been making her wail.  Again, thought it was just theatrics.  Buuuuuuut..... baby shampoo is made using, yes- corn.  In addition, the same reaction is seen with baby wipes near her face and she doesn't particularly like her hands wiped by them either.

From everything I've read, it appears that kids are just so stinking miserable being 'corned' if they are allergic or severely intolerant that it manifests in rather horrible behavioral ways.  They simply don't know how to verbalize that they feel like crap, and so they act out.  We have been very consistent with L,  but we are just at a loss when she is acting like this.  No discipline tactic seems to have any effect whatsoever.  Its like we aren't even talking to her.  She bounces off the walls and is very erratic. Very ADHD-like in symptoms, but there is an ebb and flow to it.  It isn't constant.

On the one hand, it really would be a bit of a parental relief if all of this could be traced back to corn.  To have the insanity end by changing her diet.  On the other hand, it is slightly heartbreaking to have to put her back on a restricted diet.  Having to tell her she can't have things she has come to really enjoy is not going to be fun.  Only one way to find out..  Here we go with corn-free trial with my #1 girl.


And what about my other favorite little person?  It is looking like my hunch with her was correct.  Since changing things like her sunblock, disposable diapers, wipes, and baby soap she has been quite a bit better.  She has worn the new sunblock on several occasions now and I've seen none of same symptoms as were experienced with the corn-laden version.  The more information I have seen, the more I'm questioning if some of her previous fails were really not the actual food at all, but the presence of corn ON the food from packaging or processing.

To be honest, its all making my head spin.  It makes SO much sense.  Too much, really.  I want so desperately to be wrong.  Avoiding corn is painful at best, and with so many other restrictions already the mere thought of my foreseeable future is exhausting.  So much to worry about... times TWO.

Corn.

I have childhood memories of looking out the car window at the blur of cornfields as far as the eye could see.  When people think of corn, they typically think of those cute little corn cob holders and summer BBQs.  I sure did.  Did being the operative word, here.  I no longer think of corn as a benign summer treat, and I'm really not all that happy to see the little cob holders, either.  I'm tired of seeing corn... because it is EVERYWHERE.  In EVERYTHING.  Why do I care if its everywhere and in everything?  Because I'm beginning to wonder if its a bigger part of Liv's puzzle than originally thought.  Yeah, because she needs more complications to her diet and everyday living...  ugh.

Its been a while since I've updated a post here.  In a certain sense, I think I just needed to take some time for a breather.  Liv's been doing well on her formula, and we've had enough foods to keep her feeding skills up.  Essentially, I needed to not have every waking moment's thought revolve around FPIES.  We've gone to the beach and hit up the local water park.  Just enjoyed some beginning summer fun.  Unfortunately, though, I'm thinking these things have reinforced my prior concerns about corn.  Worse- it appears her problems with corn are more 'involved'.

We had been going to the beach, but she was eating the sand a bit while we were there.  I assumed that the sand was the reason for subsequent loose stool and diaper rash.  Ok, so we start hitting up the water park.  Same thing, except she wasn't eating sand.  Wasn't even really ingesting any chlorinated water.  She WAS however slathered in sunblock(... with plenty of corn ingredients and soy oil).

You can see where this is starting to go, right?

We went blueberry picking -a favorite activity for L- and thought that this was a perfect opportunity to trial blueberries.  You can't really get a more unspoiled source than picking organic berries from the bush yourself, so why not!  The first day we went, I had her in an Ergo on my back and only needed to put a tiny bit of sunblock on her.  The first day or two of blueberries resulted in slightly loose stool and maybe a hint of mucous, but nothing else.  Seemed blueberries were being well received?  We went again a few days later to pick more berries.  I let her down to run around and even pick some herself.  Knowing she'd be running around, I slathered the poor kid in sunblock.  Well, the floodgates of mucous poo opened, and it wasn't good.  Bloody bottom, reflux and everything.  Misery.  Her blanket even smelled of reflux the next morning.  She must have had some gnarly reflux in the middle of the night.

My mind is still not functioning, apparently, to start connecting dots...


I assume its the blueberries.  It was a bit of a mental blow, actually.  Even for FPIES kids, the likelihood of reactions to blueberries is really low.  Almost no kids have problems with blueberries.  What was going on???

THEN.  Livvy got ahold of some of her sister's stickers.  And ate them.  I know that she ate them because they came roaring out the other end fully intact a few hours later like something off of Nickelodeon's Slime Time.

CRAP!  Well, literally, but also Oh my Goodness, how did I not see this???


Most kid's things like books, stickers and the like are printed with soy ink.  You know- all those lovely things that tell parents that even if their kid ingests it, it won't be toxic?  Yeah, well that's how- they use soy.  AND, most adhesive is made from....you guessed it!  CORN!

The take-away from the last few weeks?  Corn is way more of a problem than I thought it was, and even more of a problem than I thought it could be.  GI symptoms from topical applications of corn products and by-products?  I've heard of the phenomenon from other FPIES mamas, but I'll admit its odd.  There is not much known about FPIES, scientifically speaking, and so much that the doctors don't understand about the mechanism of it.  If it was 'just' protein intolerance, GI symptoms shouldn't be manifesting themselves from topical application of products.  Patch testing -which is a bit controversial in the FPIES community- shouldn't get any results either for that matter.  But some have had very accurate results from it.  Its obvious, to me at least, that this is truly an allergy of some sort... we just don't understand the 'sort'.

My plan of action is to painstakingly remove ALL corn products from Liv's life and see how she does.  It makes me wonder if some of our other 'fails' were fails because there was already something her body was fighting in a way- all the additional corn products.  Tylenol, wipes, the occasional disposable diaper (we use cloth most of the time), baby soap, sunblock.......

Other thoughts?  I am hoping and praying regularly that we don't somehow develop issues with her formula because of corn intolerance.  THAT is a whole other frightening topic I'm not even sure I want to think about more than a few sentences worth.

I suppose its a good thing that I 'took a few weeks off' of my FPIES mommy brain working in overdrive.  I'll need the energy to deal with ridding corn from Liv's life.
 Yup.  I just don't look at corn at the farmer's market the same way anymore.  A kind old farmer said while I was there last, 'Oh, you must be looking for some of this [corn] too, right?'
'No, thank you, sir.  We have too much corn at home already'.

Peaches and Cream

Good news to report!  I think peaches are a pass!  Very exciting stuff around here.  An uneventful food trial makes Mama very happy... and more importantly makes Livvy happy! We have now gone about the longest stretch in her life without a reaction (of one level or another) to something.  And the bonus???  She's been SLEEPING.  Like- sleep through the night sleeping!

*****HALLELUJAH ***** can you hear the chorus singing it now??? because I sure can!


If we react to something, this all will stop of course, but for this moment in time she is doing so amazingly well!  Its because she feels so good.  She's such a happy and content kid when she's feeling well.

Speaking of happy kids, we have taken L out for some fun this weekend and I am very excited to report that she got to spend it eating fun stuff just like all the other kids around us!  Her dairy intolerance was still with us until the end of the summer last year so this is the first summer in her little life that she's been 'free' to eat fun stuff;  avoiding peanuts like the plague of course.  We went to the beach the other day and I noticed an ice cream truck hanging out by the bath houses.  As per normal protocol we walked waaaaaay around the truck so it wasn't noticed by her on the way in.  I sneaked back out after an hour or so to talk to turkey with the ice cream dude.
  After scaring the bejeezes out of him with the explanation of my kid's peanut allergy he went on to explain that the only things with peanut products in the truck were two pre-packaged treats that were kept in a completely separate freezer from the hand-dipped ice cream flavors (vanilla, chocolate, mint chocolate chip and cookies and cream).  He also took the time to take all the ice cream tubs out and read the labels aloud AND gave me the box from the cones to look at to make sure there was nothing there either.   It was as 'all clear' as one could hope for without making my own ice cream out of milk gathered by hand from a dairy cow in the backyard... which, by the way- I don't have.  The cow.. The kids create enough of a barnyard environment as it is!
I happily skipped up the sand with a grin on my face.  After a little while, we asked L if she would like to get some ICE CREAM on the way out.  Her little face lit up and we recieved an emphatic yes.  So we went down and got ice cream.  L was all smiles with that single scoop vanilla cone's contents melting down her arms.  It seemed like such a small, normal thing to everyone around us.  But for us, it was a piece of normalcy that we simply hadn't been able to have before now.   A few fleeting thoughts of the last few years spent avoiding ice cream trucks, birthday parties and tears shed over not understanding why she couldn't have a cookie somebody else had, ran through my head.  For a moment I felt my eyes well up with happiness for my oldest child who was finally getting to enjoy something so simple as a day at the beach with an ice cream cone.
Then that all got pushed out of my head and we enjoyed the moment.  It was great.  Really great.

I'm holding out hope that we'll have a moment like that with Livvy some day.  We'll take the peaches victory for now, though, and be happy for L's ice cream adventures!

Sorry. Can't make it.

If you couldn't tell by my (I think) chatty tone, I'm a fairly talkative and social person by nature.  Ok, I've been known to talk so much I make my husband's eyes glaze over and was voted 'most talkative' in my high school senior superlatives.  But I digress.  I enjoy being around people and having a good time.  Even more so,  I have enjoyed watching L interact during play dates and now preschool.  FPIES is seriously crimping my style, here.  Under normal circumstances I would be very active in a play group and be out and about often with the girls seeing friends and exploring the world.  Nothing about FPIES seems to make for a normal existence.
I'm really thankful that L is in preschool.  Its giving her a much needed dose of socialization, and a short break from my otherwise constant paranoia with her sister.  There's just so much we can't do.  So many places we can't go, people we can't see.  The whole thing is just so unfair for L.  We've been having some behavioral problems with her lately.  And although I know her age has a lot to do with it, I'm sure having to take a backseat to Livvy's 'issues' also plays a major role.
At this point, Livvy doesn't know any different;  that she's not socializing like she would be in another life without FPIES.  It definitely makes me a bit sad at times.  I so desperately want her to have some regular normalcy.  Unfortunately, there are just so many facets of a 'normal' toddler existence that are just way too  dangerous for us at this point.   Most people have just given up asking if we'd like to get together and let the kids play.
It sounds like such a fun idea... until that moment we actually do it.  Its really not all that socially acceptable to be on your hands and knees searching for rogue cheerios and going nuts with clorox wipes on somebody else's toys.  There's also the inevitable heart attacks from some other kid's sloshing sippy cup.  Then we get home and chances are good we've had some sort of 'exposure' (food-slimed toys, crumb off the floor, etc) and the diarrhea will start.  Oh, and more than likely I will have received some interesting comments regarding my children's allergies/intolerances as well.  The risk to reward ratio just sort of stinks.
So we stay home.  I've given up trying to explain the real reason we can't venture out for play dates.  Nobody really 'gets it'.  Generally, I come up with some random excuse that might sound 'normal' for not showing to a play date. Maybe some day things will be normal.  Maybe.  Until then, though, we won't be able to make it...

Upswing with Maple Syrup!

Sometimes when I am out in a store, I have a moment where I'm very glad I live in an area big enough that there's a good chance I'll not be seeing anybody that I know.  Reason being... I must look like a deranged animal on the hunt.   If there's something in particular I'm trying to find, I've been known to whirl around town tasmanian-devil-style hopping from store to store until I've secured the goods.  My most recent target was a waffle stick maker.  I had seen it, and considered it-looked like so much fun, then put it down.  We didn't have enough safe ingredients yet (or so I thought).  BUT as I was googling around the web I found an egg-free waffle recipe that I could tweak and we could trial buckwheat flour!  Buckwheat, just as a side note, isn't actually wheat at all.  Its not even a grain.  Its technically in the fruit family... related to rhubarb from what I've read.  I don't know, I'm no food expert (give me a few more months with FPIES and I might reconsider my expertise) but not actually a grain is good enough for me.  So anyway, after seeing the recipe I ran out of the house like a crazy person toting my whining children  happily strolled out of the house with my perfect children and went to buy the waffle maker I just had to have.  I had visions of a chunky little fingers holding a yummy waffle dripping in maple syrup!

I'll spare myself the embarrassment of how many stores I went to, but I'll just let you know that in the end I got my maker!  Its possible that I frightened small children in the process with the wild look in my eye as I stalked the isles searching...  but I suppose they will recover from the fear ;)  

After whipping up the first batch, L decided that she needed some waffles.  Her diet has been pretty 'normal' so I wasn't sure how these particular waffles would go over with her.  Much to my surprise, she actually liked them.  Huh.  I cautiously picked up a stick and swirled it in some maple syrup and they were actually pretty darn tasty!  Score 1 for the FPIES mommy!  The true test, though, was seeing if Liv would actually eat any.  The first attempt went so-so.  She wasn't throwing it on the floor at the first taste, but not exactly scarfing them down either.  This wasn't a shocker.  Liv's eating has been more like recreation for her.  After eating several things that have made her sick, I believe she has had a bit of a distrust with food.  Because of this, she hasn't really been able to associate eating with feeling satisfied.  If Liv has been hungry, she has wanted nothing to do with solid food and only would scream until she had a bottle.

The next day we tried the waffle sticks again.  Livvy actually ate several whole bites!  This was very encouraging.  Over the next two weeks she would nibble more and more at each sitting.  She had them warmed with syrup and also enjoyed chomping on a frozen one since she's teething.  Then a few days ago, an amazing thing happened.  She ate.  She actually ate almost an entire stick!   And that afternoon, she ate almost an entire potato!  The day after that... entire waffle stick, most of a potato and half a pear!   This is just so exciting.  She's really eating!  Happily!  Seemingly trusting food enough to eat more age-appropriate portions.  I'm officially calling buckwheat a pass, and we are moving along to something else.

There is a pit in my stomach about trialing a food that could possibly give her a reaction and have her revert back to not wanting to eat.  I have to try more foods, though, so onward we march.  Wish us luck!

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 ;)