Understanding.

There are so many horrible, awful, disgusting, stressful and indescribable emotions and experiences that go along with this FPIES beast.

Man, this is a *positive* post... you must be thinking to yourselves! Haha.  Its good though!  Seriously!  Hear me out!

The upside to FPIES seems to be the absolutely amazing mamas I have been able to meet in the process of all of this in the last almost year.   By 'meet', I mean getting to know on various online forums.  These are the women who have given me more cyber-hugs than I can count, cheered us on when we started passing foods (that I NEVER would have started with if it weren't for their hard-earned FPIES wisdom), and helped me just generally cope with all the craziness.

Having a child with FPIES can be really lonely.  So many things just aren't safe.  If you're trialing foods, leaving the house is a bad idea.  Projectile vomit while hanging in the play area at the mall isn't all that socially acceptable.  That play date just doesn't have the same appeal with the thought of sloshing milk sippys and ziplocs of goldfish crackers (shudder).  Even birthday parties, having a babysitter, even choosing (or not) to continue working- because that means daycare- which is a terrifying thought!  All these social events become way too stressful, so you just don't go.  The thought of somebody bringing other children to your house that might 'contaminate' your much-labored-over 'safe' home is enough to drive a girl to drink!  So you don't (bring anyone over.  you DO drink! wine anyone?).  You suck up the loneliness, the whispers from others that you're overreacting, and decide to just dig in and keep your child safe from reactions.  Heck, its lonely even at the doctor's office.  When the syndrome with which your child is diagnosed elicits the 'deer in the headlights' look from your pediatrician and all you hear are crickets chirping like you're living a bad cartoon...  well.. that's sort of lonely too.

Don't misunderstand, I have people in 'real life' that are quite supportive of our FPIES journey.  Its just that unless you've really lived it, so much is hard to explain.  Especially those early months- its pretty intense and overwhelming.  So I have come to rely on the other FPIES mamas in our life reaching from all corners of the globe,  helping to ease the sting of the isolation.

TODAY, though (this is the good part I was promising!) I met up with another FPIES mama.  For REAL!  In real life!  I sipped coffee, and chatted.  It is a really powerful feeling to completely understand and to be truly understood.  While you certainly don't want other mamas to have to deal with FPIES, it is a pretty amazing feeling to know you're not alone.   We talked, and laughed and lamented.  It really did my mama heart good;  I think we'll do this again soon!  It was a good day, filled with mutual understanding, and was not at all lonely.

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!

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 ;)

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.  

Moving right along

The score so far:

Livvy:  pears, carrots and POTATOES!

FPIES:  milk, soy, rice, oats, bananas and (probably) corn.


I am absolutely ecstatic over our pass of potatoes.  If I wasn't so out of shape I'd do cartwheels across my front lawn.  On second thought, perhaps that wouldn't be the best choice.  The neighbors already think I'm certifiable.  Nix that.

Oh, on the subject of being out of shape, (and my desire to get back into it) I have a small victory to report!  I have had a happy baby!  Livvy has been happy and content enough to let me strap her in the baby jogger and go running while L is in preschool.  A few months ago this would have been unheard of.  We'd have been half-way down the block and Liv would be losing her mind and screaming.  Her time in between comfort nursing sessions was pretty short and to be able to jog and shower just wasn't possible.  Such an improvement!

We are moving onward and upward!  I really want to try coconut and quinoa.  Both have SO many possibilities.  Coconut milk, manna, oil, flour.. coconut ICE CREAM!  Quinoa flakes, flour and all the baking and cooking possibilities!  With coconut and quinoa I could rule the world!  Ok, I'm getting ahead of myself here.  Maybe that's going a touch too far.  Perhaps we will (happily) settle for the possibility of having an ice cream treat the whole family can enjoy!

*fingers crossed*
*doing a dance*
*saying a prayer*

Well, of course I do!

There is something, it seems, often said to parents of kiddos with FPIES.
I know it comes from a good and well-intentioned place.

'Well at least she should outgrow it, right?  Betcha can't wait till then!'

While this is 'hopeful' and, again, I know its well-intentioned- it is also very insensitive to the fact that we are living with this NOW.  Yesterday, tomorrow, and two weeks from now.  FPIES will be part of our daily lives.   Our family can't live in suspended animation until a magical time in Liv's development that she wakes up with a flashing neon sign on her forehead saying "OK, ITS ALL CLEAR!  I'VE OUTGROWN FPIES!  CALL FOR PIZZA AND CHINESE TAKE OUT- EXTRA RICE!"

Our daily lives can't revolve around a wish that 3-5 years from now Livvy will outgrow her issues.  The fact is that, yes, she might absolutely wake up at age 3 on the dot and be free of FPIES.  But what if she doesn't?   Should I be disappointed if she doesn't?    It is also quite possible that we will be dealing with multiple food allergies and everything that goes with it for many years to come.  And you know what?  That's just going to have to be OK.  It is what it is, and its just part of Livvy right now.

Of course, I want desperately for my baby girl to be able to eat anything she darn well pleases.  Of course I do!  But that just isn't going to happen any time soon.  We've got to make her daily life as flavorful and 'normal' as possible NOW.  We are still in the beginning stages of trialing foods.  We have several passes so far and I am thrilled!  I want to her to grow up concentrating on what she CAN have not what she can't.  If Livvy does outgrow some or all of her FPIES triggers, I will be forever grateful.  If not, I will still be forever grateful- that we have a happy little angel of a girl that loves living life and giggling at her silly sister.  

Breastfeeding to Neocate: the switch

The beginning of December marked the end of breastfeeding little Liv.  It probably was best to wait until now to write about this.  I needed some serious time to reflect on the transition and for my hormones to level out.  The hormonal insanity that ensues following a non-gradual weaning is brutal (just ask my poor husband!).

 I was trying so hard to not only nourish Livvy, but to take care of her and L was exhausting.  There was more than one occasion that I just sat down and cried because I felt like a complete failure.  The question started coming in passing from folks 'oh, well why don't you just give her a bottle?'...  the answer is that I was terrified by that point.  If she couldn't tolerate breast milk I knew that any formula on a store shelf was sure to cause BIG problems.  Not to mention, I'm a slightly 'crunchy' girl and try to eat as much organic and whole foods as possible and the thought of formula in general just made me cringe.   I really thought I could gut it out and continue to nurse her.  I felt like I was doing everything 'right' and yet my baby with the happy disposition would continue to morph into a screaming, flailing, spewing, mucus filled disaster on a regular basis.  On top of it all she often suffered through blistering diaper rash.   It was awful.  One minute she was Ok, and the next she was screaming. That was right about the time that L would do something crazy to get my attention because it was being pulled in one (very loud) other direction.

You know-  its possible that I could have done a total elimination diet and stuck it out if Livvy was an only child.  That kind of diet would have most certainly been all-consuming.  I am a mommy to TWO little girls who BOTH need me.  I couldn't push one aside while spending all my time taking care of the other.  As it is, enough time and energy is spent with Livvy pretty unfairly.  I just couldn't do it anymore.  I couldn't handle the stress that comes with being terrified that something I put in my mouth might cause days or weeks of misery for my baby.  We desperately needed some sort of stability to Liv's diet- for all of us.   Despite all my efforts, my baby was still a mess.  I really felt like I was losing my grip.  People would say to me that she looks fine and happy.  Of couse she did.  We wouldn't dare leave the house with her reacting to anything, and she was comfort nursing so often her weight was over the 90th percentile.

The starting point was our first Allergist appointment.  Livvy had just reacted badly with rice cereal about a week earlier, and was still extremely 'needy'.  I was supplying all of her calories and her comfort with constant nursing.  I had so many things out of my diet and was dizzy from my body sucking so many nutrients out of itself trying to keep up with her demands.  My foods were very restricted and yet it seemed like she was reacting more and more to whatever it was that I was still eating.  Sort of like the harder I tried the worse she was getting.  The entire situation was completely maddening.  We were scheduled for a 90 minute appointment with the allergist.  She listened to our entire history.  Although my google doctorate had me all but convinced that we were dealing with FPIES, I was sure to not even mention it when we got in for our appointment.  I wanted to know what was really going on with Liv- no matter what it was.  The first sentence out of the allergist was, 'Well, I think she has food protein induced enterocolitis syndrome given her symptoms and history'.  Its odd to feel relief when you get a diagnosis that involves an ongoing issue for which there is no cure.  But It was a relief, I suppose, to get reassurance that there was something going on and I wasn't going crazy.   This also meant we could start a plan to safely nourish Liv.

Knowing I had been exclusively breastfeeding, the allergist approached the formula subject gently.  I nearly burst into tears in the exam room telling her that I just couldn't do it anymore and YES to PLEASE send us home with samples of elemental formula to try.  I prayed that Livvy would tolerate one of them.   I desperately needed my baby to start to feel better.  Months of seeing mucus and blood in diapers and hearing tiny whimpers of pain while she was trying to sleep was taking a toll.  A mommy just shouldn't have to deal with these things- This is not a scenario that was covered in any chapter of What to Expect When You're Expecting...

We started with 3-4 different bottles and a plan to stay home for several days to try to establish bottle feeding.  The first day after only a small amount of formula it was very obvious that Livvy was feeling better than normal.   Getting her to drink the formula wasn't fun.  She was MAD.  It tasted horrible and she wasn't at all used to eating out of a bottle.  The following week I pushed a bottle at her about every half hour in hopes that she'd start to get used to it all.  Honestly, it is a bit of a blur now.  I was so stressed out wondering if the formula was going to stop being tolerated and if she was drinking enough.    Probably about 10 days or so later I felt comfortable that not only were we tolerating the formula, but thriving with it.  I also knew that if there was a choice of breast or bottle, baby girl would want the boob juice every time.  I knew we needed to go cold turkey; both for the transition and because she was so much more comfortable on formula.

I took a deep breath and, with my hormones already crashing all over the place from only nursing about half of the normal amount,  sat down to nurse my baby for the last time.  I cried.  Blubbered, really.  As Oprah would say, I had an ugly cry.  This was it and we weren't going back.  After months of a pretty restricted diet, I marched myself into the kitchen and whipped myself up a box of macaroni and cheese. I knew that I couldn't nurse her after eating dairy since that was the worst trigger for her in my diet.  I plopped down at my dining table with the whole pan of macaroni from the stove and ate the whole thing.  Then I cried again.

It was a whirlwind couple of weeks following.  My hormones were crazy, my baby was emotionally crazy, but physically doing MUCH better.  I knew we had made the right decision for us; for our family.  In the end, it really eased my stress level knowing that we had something to feed Livvy that would consistently be tolerated.  We had crossed the first hurdle to safely nourishing our little Liv.  

I need to win the next Power Ball lotto

Seriously.  I need to win the lottery.

I've got my 'cart' at Amazon loaded with special flours, snacks and ingredients.  Lets just say the total is staggering for just a couple things.  Granted, you've really got to buy things in bulk ordering from Amazon but its got to be cheaper than the gas to get to Whole Foods (just under 2 hours away) and paying their prices.  BUT STILL.
Its days like this when the reality of FPIES smacks you (and your wallet) hard.  I want nothing more than to give my little girl as much variety as her little body will safely allow.  Its just that its insanely expensive to do so.  I knew it would be.  A couple years of dairy-free cooking for L gave me a peek at the fun and games awaiting us for the years to come with Livvy.
So if you see me on the street, don't bother asking to borrow a couple quarters for the parking meter or if I'd like to donate to X-Y-Z 'cause'.  I won't have it.  I've got freeze-dried pears and potato flour to buy.

Good Vibes, Pretty Thread, and Potatoes

Carrots are a pass!  I had fingers crossed and held my breath (I might have done a few other silly things too), but we had no problems with them at all!   Livvy has come to the point that she gets excited to eat them.  Such a long way from her crying hysterically while I was trying to feed her pears and bananas (evil) just a few weeks ago.  

We've also had very good early luck attempting a switch from Neocate Infant with DHA/ARA to Neocate Jr Vanilla with prebiotics.   From what I've gathered from various support boards, many sensitive kiddos are having issues with the DHA/ARA.  Its a new formulation for the company, and frankly, I can't for the life of me figure out why they would change it.  The babies that rely on elemental formulas are on them because their systems are so fragile they can't tolerate anything else.  That can of powder is the only thing standing in between their health thriving or failing.  Why mess with a good thing?  So we're trying the Jr, and Livvy seems to be tolerating it very well thus far.  We were doing generally well on the Infant, but Livvy's sleep was sort of restless.  Nothing like when we were breastfeeding or if she's reacting to a food, but I just couldn't fight the thought that 'something' was a bit off.  A couple days into the Jr she's sleeping much more peacefully.  Its nice to see.  She's never really slept peacefully unless we were holding her.  It just confirms that a mother's intuition IS right- Liv wasn't sleeping well on her own because she was 'spoiled' (OH BOY could I write a whole stinkin post about that one...), she wasn't sleeping well because her tummy was still a bit upset.  The medical supply company is getting insurance authorization for a longer trial of that formula to be sent for us to continue to test it beyond the smaller sample I was able to get from the allergist.  In the meantime, I've been going back to the Infant since we ran out of the Jr sample.  Her sleep is noticiably different and not for the better.  We have a good feeling about this Jr formula working out well for baby girl.  

In other news,  I've managed to sit down at my sewing machine a bit the last few days.  I find sewing very relaxing, oddly enough.  The girls have a few tops already, and I've got a stack of things waiting in the wings to get going.  I might have to post a few pics soon.  Everything is adorable.  My little models are pretty cute too.  Its amazing how productive I can be once experiencing the luxury of a little bit of sleep.

Moving along, we are beginning a trial for white potatoes.   I want potatoes to be a pass soooooooooo badly.  There's a whole world of food possibilities once we have potatoes.  So here we go again with the holding of my breath, saying a prayer, doing a rain dance, and jumping up & down while patting my head and rubbing my tummy.   Don't judge me... it worked for carrots...  hehehehe

I've got a bone to pick

Ok, FPIES- I've got a bone to pick with you... You are SERIOUSLY cutting short my crafting time.  Specifically, there are several yards of beautiful Amy Butler fabric and other assorted goodies waiting for an overdue date with me and my sewing machine.  There's two little girls in this house that need cute tops, tunics, and dresses and I'll be damned if I spend the ridiculous amount of money needed to purchase those kinds of things in a store.   If my Livvy can't have a birthday cake, she surely is at least going to have a very cute dress to wear for the occasion!
As it is right now between L having an ear infection (read:  didn't finally fall asleep until 1am) and Livvy's sleep patterns only being that she has no pattern, I'm flipping tired.  It could be potentially quite dangerous to sit down to my sewing machine and serger.  I mean, an electrically powered device that has a punching set of needles and razor sharp scissor blades combined with excessive tiredness just doesn't sound like good times.
There's plenty of 'important' reasons FPIES might just cause me to go gray.   But honestly, today, with those lovely prints on that fabric speaking to my creative side... well... This FPIES business just puts a serious cramp on my style.  Or, more appropriately- my kids' style.

NOTE:  This is intended to be my stab at being mildly humorous, and not a reflection of the seriousness that is our FPIES situation.  Thx.

:-)

*SIGH* relief. Well, for now anyway.

We have a few positive things to report from the last few weeks.  I'm feeling a bit less terrified than a few weeks ago after our miserable ending to the banana trial.  Soon afterward she also came down with a cold.  She's never had a cold or been otherwise sick at all... apparently many kiddos with FPIES are rarely sick.  Interesting.  Anyway, because of the cold and crankiness and possible poo looking funny because of it, I delayed starting our carrot food trial.  Being able to notice some signs of a food fail before it gets 'bad' is important.  The worse the reaction, the longer it will be before she is recovered enough to try something else.  As it was, it took nearly two weeks for Liv's demeanor and sleep to return to normal following about three days of being miserable and hardly leaving my lap.  

I'm happy to report that so far so good with carrots after about a week.  We are still going to continue for a few more days before I am comfortable, but there's absolutely no signs of any issues so far.  None.  Even bigger news, though, is that she's happily feeding herself small pieces and seems to like it.  Pears and bananas I had to literally shove down her throat with the spoon because she wanted NO part of it.  There was serious fear on my part that we were going to end up doing therapy to overcome this food aversion business.  So I am THRILLED that she's feeding herself.  Our dog is pretty psyched too.  With all the food bits flying off the high chair tray, I think he's finally starting to forgive me for bringing another tail puller home.  Ha!

We also had another visit with our allergist.  I just love her.  She's personable, informed, and (this part is important) admits that she doesn't know EVERYTHING, and has told us that if Livvy's case gets complicated she'll refer us up to CHOP.  *** stepping on soap box ***  I completely respect the amount of time and effort that goes into the higher education of physicians and other medical professionals.   But some of them believe that they surely know everything and that they understand what is going on with your kid better than you do.   I've had more than one give me pretty crummy advice that prolonged misery of my child, and they'll have to forgive my hesitance to accept their words as gospel.  *** exiting soap box now ***  Ahem.  Anyway.  So we saw the allergist and our next food to try is white potato.  I'm pretty excited about this for a few reasons.  For one, it seems like statistically it should be an easier 'pass'.  For the other, I can do fun things like make oven fries!  Yummy finger food!  I don't know if I can adequately explain my excitement over the possibility of tasty finger food, but believe me, I'm stoked.  A little piece of something 'normal' to give to my baby girl is very exciting... there's so many 'normal' things she doesn't get right now.  

So I'm praying, hoping, and keeping fingers & toes crossed that carrots continues to go well and that white potato is Ok :)  For this moment in time, we're on a small up-swing on this FPIES roller coaster.  

Carrots.

Carrots.  They seem like such a mundane vegetable.    What with their flowing green sprouts and happy orange color.
They scare the H-E-double-hockey-sticks out of me.
We are fresh off our FAIL of bananas in this house.  As in- she hasn't eaten them in a week and 2 days and she just started acting somewhat normally yesterday.  And by 'eaten them' I mean she had about two teaspoons worth.  I think we were really working up to a bad reaction, but knowing her signs by now, we pulled them before it got bad. 
I'll admit it.  I'm completely freaked out about another BAD reaction.  Its easy to think about it in the abstract.  You know- she'll be uncomfortable.  So I'll comfort her.  She'll poop a bazillion times (I use cloth diapers.. her skin is just as sensitive as her GI tract).  So I'll do a lot of laundry.  She won't sleep well at all and I'll be sleep deprived.   HELLO Starbucks drive-thru.  
The problem is the actual reality of it all.  Its mentally exhausting.  I used to think there was nothing worse than your baby not feeling well and you not being able to help.  Oh, how wrong I was.  Way wrong.  What's FAR worse is your baby being miserable and knowing it was the food that YOU gave them that made them that way.  [insert mommy guilt here]
So I need to start carrots, per the allergist.  I'm hoping... praying...  can we puhleeeease pass this food?  No screaming.  No mucus poop.  No sleep disturbance.  No reflux.  No vomit.  *sigh*
I think we'll start tomorrow.  I'm stressed out just thinking about it.

**** while in the middle of writing this post, my husband got up in a panic and wondered what Livvy had in her mouth.  If it was the 'wrong' thing- you know, anything other than a toy of hers, the results could be devastating if it were food.  So the calm, cool and collected mama that I am levitated off the couch and sprinted like a gazelle running for her life across the room... it was a pacifier.  Whew.

All the Cool Kids are doing it

That night after our second FPIES reaction when I was searching for information, I kept coming across the same couple blogs maintained by FPIES mommies.  I cannot say how vital those blogs were in directing us towards the direction of answers for Livvy!  Their stories and links for information were instrumental in Livvy being diagnosed so quickly.  We really were headed in the right direction (we HAD a direction!) because of them.
I wanted to be able to pay it forward, in the only way I really can.  So this blog was started.  I kind of feel like I'm falling in with the 'in crowd' on babycenter's FPIES page.  LOL.  You know... 'all the cool kids are doing it'... blogging about their FPIES kids.  I understand the appeal.  FPIES isn't well known and being constantly misunderstood is exhausting.  Spending a slightly more than acceptable amount of time trying to explain this crazy issue to every person who asks is a bit much.  Its easier to direct friends and family to the blog if they want to know 'how Livvy is doing'.   It isn't that I don't want to take the time to explain, per se, but I'm just not that effective in doing so with a baby crying and a preschooler screaming in the background.
Sooooooo, I'm one of the cool kids now.

FPIES, the thief.

Let me preface this post by saying that I am very grateful for many things in life.  My girls don't have any fatal diseases, we have a roof over our heads and food in the fridge.  There's also lots of love going around in our home.   I don't want to sound ungrateful for what I have... but I would be lying if I wasn't a bit sad about what I (and my girls, especially Livvy) don't have. 

I'm just going to go ahead and put it out there... FPIES sucks.  It has been a thief of simple pleasures and special times.  

Breastfeeding has always been something I was dedicated to with both of my girls.  I strongly believe in its health benefits and bonding time.  It was because of this belief that I stuck it out with a restricted diet as long as I did with Livvy.  Towards the end, I had dairy, soy, corn, rice, beef, rice and oats out of my diet and she was still not tolerating my milk.  I wanted so badly to continue to nurse and 'do the best for her'.  With so much out of my diet, producing enough milk to 100% nourish a 7 month old was really taking a toll on me.  I was exhausted and weak.  All this and still not complete improvement of her symptoms.  By the time we saw our allergist, I was at the end of my rope.  My whole day (or so it seemed) revolved around what I could eat, when, and how to find it in the stores or cook it.  I had no time for L and just felt like I was failing.  Miserably.  We 'trialed' elemental formulas, and switched to Neocate Infant.  I feel like the switch to formula deserves its own post, but suffice it to say, it was not an easy transition.  I really felt robbed of breastfeeding my daughter, and was very uneasy about feeding her such an engineered diet.  

Then there's the simple pleasure of introducing 'fun' new things to your growing baby to eat.  Yeah, there's nothing pleasurable about holding your breath and waiting to see if your baby starts to projectile vomit or have bloody diarrhea over eating a bit of bananas.  You can forget about cute little cheerios and first bites of ice cream.  

What has me most 'down' these days, though, is Livvy's first birthday coming up.  There won't be any cute cake pictures here.  The only 'safe' foods for her thus far is Neocate formula and baby pears.  Rather impossible to fashion anything that resembles cake from those two things.  I'm fairly handy in the kitchen, but I'm no magician.  It breaks my heart a bit that she won't have a 'normal' birthday party.  I know she doesn't know any different, but I still feel like she's being robbed of something special.  

My 3 year old has a lot of restrictions around the house... just rules to keep her sister safe.  I am a psycho about cleaning up the floor.  I haven't had play doh around in months (could cause a bad reaction if Livvy got any of it), and we haven't been out to eat much because I need to buy some sort of high chair to take with us so Liv doesn't get her hands on food residue.  Not to mention all the times I've told her, "sorry, L, we can't today.   Livvy isn't feeling well and we have to stay home".  

No, I don't wallow in this stuff daily.  Don't get the wrong idea here.  They are things, however, that I think about in passing every so often.  All I can do is the best I can for today, and hope that a tomorrow in the future allows us to do something CRAZY like go get pizza and ice cream as a family

Getting up to speed-

Where to begin, where to begin?
  I suppose I'll back up a bit and start with our oldest lil lady, 'L'.  Bless her heart, she was an awful baby.  I mean that in the most loving way a mama can say it... but honestly, the poor kid was miserable.  She never slept, breastfed constantly, pooped constantly (if you're squeamish about poo, just go ahead and leave the blog now... there's many mentions of it to follow), and just generally scowled most of the time she wasn't screaming.  The long story short for her was that it turns out she was severely intolerant to dairy milk proteins.   She reacted to it through my breastmilk, but got far worse symptoms when she directly started ingesting it around 10 months when we switched to (dairy based) formula and eating solids.  Though I have no problems eating dairy, my mom doesn't tolerate it well at all and suggested that I cut it out of L's diet.  Skeptical as I was, I did.  She was like a different kid.  Happy!  Started sleeping!  HALLELUJAH!  Soooo we started avoiding dairy like the plague and she was completely fine, healthy, and happy.  It seemed like a total pain in the neck avoiding dairy, but we got used to the restriction for her and all was well.
Fast forward a couple years and we were expecting our second baby.  I had done plenty of reading on siblings of kids that have food interances and allergies and it seemed that there was a decent chance of having another child with similar issues.  I thought, OK, I know what to look for and I'll just cut dairy out of my diet if our new baby girl starts showing signs of problems.
In April of 2011, our Livvy was born.  She was an 'easy' delivery (I say this comparatively speaking.  L was a posterior, drug free birth.  Can we say 3 hours of pushing and 95th percentile newborn head circumference???) and was an easy newborn.  Then a few weeks in, she started showing signs of being uncomfortable.  Sleep was only happening an hour or so at a time, she was getting cranky, gassy, and pulling her knees up a lot.  There was also the telltale sign of mucus in her stool.  Ok, great.  Called the pediatrician and she wasn't any help other than to say 'well, you might be right that its dairy.  Go ahead and cut it out and see what happens'.  Gee thanks.  That's all the wisdom all those years of medical school can offer?  Cut dairy out promptly.  It seemed to ease symptoms but it by no means solved any problems.  As the weeks and months progressed I cut soy, corn and beef out of my diet as well.  Again, the symptoms kept improving but not clearing up. All the while, the pediatrician was essentially telling me that I needed to calm down and that I was overreacting.   There were often diapers that were streaked with visible blood and always, always gobs of mucus.  I would say there were easily 8 poopy diapers a day.  It also became obvious that she was suffering from silent reflux.  We tried a couple meds which seemed to take the edge off, but made her bowel movements more painful and gave her more gas.   By the afternoon, I would end up planting myself on the couch with Liv and nursing her basically all evening into the night.  She was comfort nursing.  The poor thing felt so crummy that she just wanted to cuddle with mom and nurse because she just didn't know what else to do.  I didn't know what else to do for her.
I put off starting solids until she was a bit over 6 months old.  Somewhere along the line, I read that baby oatmeal sometimes helped soothe the tummies of babies suffering from reflux.  When it came time to start food, I picked an organic baby oatmeal.  The first attempt at food she essentially rejected trying to eat at all.  The next day, I managed to get her to eat about a tablespoon or so.   I fed her in the evening after we ate our dinner.  Two hours later, she woke from a nap crying.  I picked her up and I heard a gurgle.....  then the floodgates opened.  Livvy proceeded to projectile vomit for the better part of an hour.  PROJECTILE.  She just kept going and going.  I didn't know where it was all coming from.  When she finally stopped she looked pale and fell into a deeeep sleep after nursing for a few mins.  I was co-sleeping (direct all co-sleeping negativity somewhere else, please....)  and I remember (vaguely) waking in the middle of the night and feeling her little heart racing.  I thought maybe she was just getting sick.  The next two days were followed with horrible mucusy diarrhea streaked with very visible blood and about a week of being really cranky and sleeping even worse than normal. Again, the pediatrician thought I was totally losing my mind and blowing this out of proportion.
After waiting about two weeks we tried some baby rice cereal.  Who can't eat rice, right?  I think Livvy had about two tablespoons.  Three hours later we awoke to baby girl being COVERED in vomit and continuing to projectile vomit.  She also already had a diaper full of explosive diarrhea.  We got the bed, ourselves and the baby all cleaned up and changed after about an hour.  I changed Liv into new pajamas and lifted her up and she went limp.  Rag doll limp.  At 7 months old, her head bobbed around like a newborn's head would.  She was gray and clammy.  I know now, that I should have taken her to the ER.  She wasn't just tired, she was going into shock.  I managed to nurse her for a few minutes before laying her down.
I proceeded to spend the next few hours ferociously searching the web for answers.  I googled 'baby+vomit+rice cereal' and this same acronym, FPIES, kept coming up.  After reading for hours, I was convinced that this was what we were dealing with.  I also was terrified about where to turn because there was more than one personal account that I read about a mom being accused of munchuasen by proxy trying to find help for their kids.
There is a great support page on babycenter.com for FPIES and I posted a plea trying to find a knowledgeable allergist or GI specialist in our area.  The mamas there really came through for me and I found a wonderful allergist about two hours away.
That was the end of November 2011.  Stay tuned for more on our journey as we learn to Liv with FPIES


For more on FPIES, go to
http://thefpiesfoundation.org/