SUPER Excited! (yes, FPIES, I know you're still here.. no need to remind me!)

****HAPPY DANCE****

Oh, yes!  YES!  I'm so excited!  Wheat is a pass!  WHEAT!

This opens up so many food doors, I'm not sure it can be properly communicated on a blog post.  You'll just have to take my word for it.  This is huge.  In the last couple of weeks, Livvy has been eating crackers!  Holy crap, my FPIES baby is eating crackers!  And (this is just waaaaaay too cool) she had her first slice of bread this past Sunday.  I found a fabulous tiny bread maker and dumped in several safe ingredients ... voila!  Bread!  

There are moments in this FPIES craziness that just strike a cord in me somewhere.  Watching Liv eat a slice of bread (and thoroughly enjoying it, by the way) was just the coolest thing... well... since sliced bread! Truth be told I was fighting back tears.  It was just such an awesome day.  Such a seemingly small thing to anybody on the outside looking in, but any FPIES family knows- something as stupendously 'normal' as a slice of bread is a major milestone.  

So I got to thinking (there I go again, I always get myself into trouble doing this!) that maybe we were outgrowing some of our sensitivity?  Just a little?  I know for a fact that having strict corn avoidance and significantly cutting down on formula (with corn syrup) has really toned down her sensitivity to react to certain things, and I think its also helped us pass the last few trials so easily.  

I mean, we really have just had a stellar last few weeks for the most part.  Its times like these that an FPIES mama could come to question herself and her interpretation on the seriousness of the situation.  

         Is it really that bad?  Am I nuts?! 

** if you know me in real life, please refrain from answering the last question....* ;)

Aaaaaand then we had today.  The FPIES princess decided that teething those pesky upper molars on a board book was a good idea.  First of all, the book shouldn't have been where it was and nobody wants to fess up to the deed... mmm hmmm...  But the kid was eating the flipping book!  GAH!  Seriously, kid??!  

We proceeded to have a pretty unhappy afternoon.  She refused to sleep.  Refused to eat.  Only wanted a bottle (yes, she's still drinking her neocate and almond milk from a bottle.  I'm not all that stressed out about switching to a cup either.  If you've got an issue with my kid drinking from a bottle... well... bite me!) and THEN the anger errupted from the other end.  A child with previously not so much as a hint of redness in her diaper area pooped and almost instantly had patches of bleeding areas that the skin just was eaten away along with raised, welted redness in other spots.  Poor baby was crying so hard for the diaper change, I thought for sure she was going to hyperventilate.  We're having a pretty restless night for sleep so far.  I know she'll be better going into tomorrow, although we'll probably have a couple more nasty diapers.  

Listen, FPIES:  I know you're still here, and very much part of our lives.  There's no need to remind us so angrily!  

Overall, I'm feeling very optimistic these days.  Livvy is thriving and doing well with food trials.  If we could just cut out these darn accidental exposures, we'd all live happily ever after.  

Well, That Was Weird.

I aspire to be a well prepared and organized super mom.  Apparently, I really missed the boat not doing Girl Scouts as a kid because I routinely fall short of this ideal.  Some days are more disorganized than others.  Ok, who am I fooling?  Most days my mama thoughts are mildly organized chaos and I'm just trying to make sure we all eat, are clothed in mostly clean shirts, and make it to the end of the day by the skin of my teeth.

The other day was very much a survive by the skin of my teeth kind of day.  We woke up late, got L to preschool late.  Livvy was in a 'mood' (I think she's getting her top molars.  ouch.) and we needed FPIES friendly groceries.  Toting my angry tot into Trader Joes with a very specific shopping list, I set about the task of grabbing our necessities.  It was about this time that it must have occurred to Liv that feeding her breakfast to the dog was a bad idea;  she was hungry and was oh-so-kind in letting me know.  While screeching like an angry pterodactyl, trying to wiggle out of the cart and yelling 'yum yum eat' over and over again I found myself searching for a snack in my bag.

See- this is where some of that scout preparedness would have been helpful.  Yup.  I forgot snacks.  All of them.  I also forgot sippy cups and bottles.

Awesome.  Not.

So was looking all around the store for something, anything, that Livvy could snack on.  My eyes stopped on a bag of puffed potato snacks that looked interesting.  I quickly read through the ingredients while Livvy was steadily going nutso.  What my mind read was: potato flour, sea salt, expeller pressed canola oil.

WOW!  She can eat these!  This is amazing!

Considering about half of the employees in Trader Joes know me by name (we are there a LOT) I didn't think I'd ruffle any feathers ripping open the bag right there in the isle.  I handed Livvy several and, like magic, she was quiet and happy as a clam.  I happily scooted over to the coffee sample bar and sucked down a few much-needed mini cups of coffee at this point.

After we checked out and got to the car Livvy was munching on the last bit of snack that she had in her hand.  Reaching in the bag to grab a few more happy-toddler-makers snacks...

My mind must have cleared with that shot of caffeinated goodness.

I looked down at the bag.  And then I saw it.

THERE WAS WHEAT FLOUR IN THE SNACKS!

I broke out in a bit of a cold sweat.  How the heck did I miss that?!  How could I let that happen?  Why was I so disorganized today??  My baby girl will be miserable because I couldn't manage to get it together!  

Settling in the next chunk of time, I was really bracing for the worst.  Like- assembling an ER bag kind of bracing.  So we waited.  And waited.  And..

Nothing.

NOTHING.

NOTHING ??!?

Now, I believe that Livvy has reacted to most new introductions on the 'first' direct ingestion because exposure to foods via breast milk served as her build-up.  Given the amount of wheat I ate while nursing, I was truly expecting a reaction.  But we had nothing.  nada.  No diarrhea, reflux, vomit... not even a hiccup.  Besides being completely blown away that we sailed through this accident I'm now thinking we should trial wheat.  It sounds crazy, right?  Grain is not really our friend.  But I can't argue with the amazing possibilities for Liv if she can have wheat, and the fact that we are limited pushes me to want to do the trial.

I really need to take some super deep breaths, because this was just so weird.  But potentially very good news!  I'm saying a prayer, crossing fingers and toes (that are shaking in my boots) and we will trail wheat.

*GULP*  Here goes nothing...

FPIES Ate My Homework.

I feel like I'm late turning in my homework.  I've been sooooo neglectful updating the blog.  SORRY!
There have been a few mamas that have contacted me after reading something here that in some way has helped them (even if in a very small way) and it truly warms my heart.  Being able to be one more story that helps put the pieces together for another FPIES mama is the reason I take time (OK, so not so much time lately.  I'm horrible!) to blog about our experiences.  Because it was FPIES mama blogs that led me to help for Livvy so early.   I feel like I have a debt to pay, and should do what I can to add one more voice to this syndrome.   So here I am.  And I PROMISE I'll be better and I'll turn in my 'homework' in a more timely fashion.

Alright.  So since figuring out our corn sensitivity, I've re-trialed several things with Livvy.  Here's the current score of safe foods:

• Pears
• Carrots (YES!  they're back! and SAFE!!!)
• Broccoli 
• White Potato
• Canola Oil
• Buckwheat products (cereal, flour, etc)
• Apples (I think)
• Blueberries
• Peaches
• Bacon
• Maple Syrup
• Celery
• and.... this is so cool... Almond Milk! 

Pretty awesome, right???

I had a moment the other day.  A real Oprah 'ah-ha' moment.  I was having a bit of a marathon food prep session for Liv's food so that I could freeze individual meals with three foods already portioned out.  Both to make daily life easier on me, but also to make it easier for my poor Hubbs to feed her.  He works so hard to support our family, but it means that he doesn't see quite as much of how to prepare her food and what is safe.  I was mid-use with my foodsaver (Best $4 ever spent at goodwill.  seriously.)  and it hit me.  Like- smacked me in the head.  I almost cried but realized it would be a sign for my girls and husband that I had completely gone coo coo for cocoa puffs.  

We have enough different foods for several different meals! 

Whoa.

I made a similar comment on my facebook page, but I'll go ahead and reiterate and expound for those of you who are just internet friends ;)

Its amazing to be 'here'.  A place where we, yes, still have to be very careful but have several safe foods.  A place where I don't have to feed my baby girl the same thing at every meal.   We are at a place where she likes to eat;  there's no fear on her part that she shouldn't eat because she equates food with feeling ill (she used to).   This is a place where we still have so far to go, but it makes my mama heart happy to know we've come this far.   Livvy is happy.  She is healthy.  She is gaining weight and growing.  Liv is fighting with her sister and she's even perfecting the toddler tantrum right on developmental schedule!  This is a place you can't even imagine when you are 'there'.  When you're holding a lifeless, gray, vomit-covered baby in your arms... or you are up for the 7th time in a night because your poor baby is in so much pain that they are only able to sleep when they literally have screamed so much that they fall asleep from sheer exhaustion.  'There' being your precious baby looking up at you with the look of desperation that they are in so much pain and they just want you to do your mommy duty and take it all away.  And you can't- you don't even know which food caused it.

Yes, it is amazing to be here.   So many families have far more complex cases of FPIES for their kids and have to go through NG and G tubes, hospital stay after hospital stay.   Two, three years without one safe food.   Our journey continues to safely nourish Livvy, but I am thankful every. single. day. that we are where we are and that she is as healthy as she is.  

And with that, I'll be back soon with another update.  I'll turn in my homework on time from now on :)

Egg-cuse Me? .. and Bacon?!?

Seriously?

I mean... SERIOUSLY???

Blah.

OK, I'm just going to say it.  We went to the allergist last week, and the initial skin test shows an IgE (typical, not FPIES related) EGG ALLERGY for Liv.  Great.  Just stupendous.  Because we needed one more thing she can't eat, right?

*Excuse me while I go bang my head into a brick wall*

AHEM.  Ok, I'm good now.  Just had to get that off my chest.  I'm all done with the pity party for this post, promise....

Because.........

I think bacon is a pass!  Yes, bacon!!!  Livvy is smitten with the tasty crunchy yumminess that is bacon, and her system seems to be OK with it too!  This is a really great thing for her.  We've needed a food with some additional protein and this is a great pass for her in that respect.  The goal is to get enough food in her diet to allow her formula to be a supplement to her nutrition only.  So about half the amount she's currently consuming.

To be honest,  my natural and crunchy side would love for her not to be on formula at all since its so processed and refined.  There's some ingredients Liv is consuming that I would otherwise never give her.  But every food pass is a step in that direction of less necessity for it.

So here's to bacon!  One step closer to a complete diet... a yummy one at that!

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!