Monday, March 18, 2013

See, what happened was....

Its been so long since I posted over here that I'm not quite sure where to begin.  I know, I know.  I had an earlier post that I swore I'd be better about updating regularly.  Man, I am really sucking at this FPIES mama blog gig.  I'd fire me, but then where would I be?  Okay, were to begin?

 Sooooo- see what happened was.....

I think we were riding a wave of doing well.   Liv was having a rock star couple of months.  We were riding high off our wheat pass and got busy living life for a change.  The truth is,  this mama was enjoying the 'break' in the FPIES madness.  I wasn't checking in on the boards (facebook and BBC) quite so often, and I felt a lot less desperate.  Na├»vety?  Denial?  Just plain sick and tired of being consumed by FPIES?  Perhaps a good mix of all three.

About six weeks ago, Livvy started waking more in the middle of the night.  There was also some congestion that was noted along with occasional diaper rash of unknown origin.   One night I went into her room to find that she had vomited.  Not across the room, exorcist FPIES vomit.  But it was vomit.  Great.  NOT!
Maybe this is just teething??  Is it the hemp milk we're trying?  What the heck???
Our typical course of action following a reaction is a couple very safe, and mild foods along with more neocate.  This seems to calm her GI tract and allow things to heal faster.  This particular time was no different, and we followed our typical protocol.  It was well over a week before all of Liv's safe foods were back into her diet.  So another week or so goes by, and the night wakings are progressively worse and worse.  I start to notice reflux along with some icky diapers and rashes.  Then it happened.  I went to her in the middle of the night and found that she had puked.  Again.  
Shit.  Really???
I picked her up and up came another vomit-wad of mucous.  Really. Ugh.

The following couple of days I was consumed with mentally retracing food steps and attempting to narrow down the culprit.  Clearly the problem was food because it came right back with food.  But what was causing it? 

 What does an FPIES mama do in situations when her head is spinning and needs to figure out what is happening to her child?  Well, besides the obvious of sitting down with a glass of wine...  The FPIES mama turns to other FPIES mamas, of course!  After a decent amount of chatter, I came to the nauseating conclusion that it had to either be wheat or neocate.  And I was strongly leaning towards wheat.  WHEAT???!!

AAAAAAAAAAAAAAAAHHHHHHHHHHHHHH  !!!!!!!UUUUUUUUUUUUUUUUGGGGGGHHHHHHHHHHHHHH!!!!!
Ahem.

Wheat?  Once I had a mini meltdown over what was being lost, here, the staggering reality hit me.  If we're failing wheat, it has taken not days, not weeks, but MONTHS to fail.  Seriously, this all made my head spin.  I have good days where I feel somewhat together and strong.  That particular day of this realization was not a good day.  Sorry to say that I totally lost my mind for a bit.  

The thing is- it seemed like Liv was really headed toward passing foods easier and maybe life would get more normal.  Please, come with me as I digress.  Because normalcy and having a child with multiple FPIES triggers does not go together.  Replace normalcy with utter chaos and insanity and you'd be closer to the truth.  I know people don't get it.  They completely don't understand how overwhelming and life-altering this is.   FPIES affects every facet of my family's life right now.  A large portion of my days are spent searching and shopping for safe ingredients.  Hours are spent online researching and pricing, calling companies to verify their practices to avoid cross contamination.  Ok I found a brand- but where can I buy it?  How far away is that store?  Oh, wait- can't go right now...Livvy is screaming in pain because she ate a crumb off the floor last night.  Guess that'll have to wait.  I'm constantly making excuses for why L can't have friends over, or why we almost never go to other friend's houses.   That goldfish hiding under the sofa at our friends house could mean a week or better of utter misery.  So we just don't go.  I don't want illness brought into the house, because obtaining medications that would not cause an FPIES reaction are nearly impossible to find.  I am in constant hyper-vigilant mode watching for crumbs, paper and making sure my little FPIES escape artist doesn't get into other areas of the house that contain things that would make her ill.  I'm mama and this is nearly impossible for me- how do I get a babysitter to be as careful?  How do I trust one?  Sooo, I don't get a break.  My husband and I haven't been on a 'date' in... uh... I don't even know how long.  Besides, he has to use his leave days to stay home with L while I go out of town and drive 7 hours one way to see a specialist in a few weeks.  Oh, and wouldn't have much money for a date either, due to our absolutely insane grocery expenditures, formula copays, and cooking equipment.  Failing wheat wasn't just failing wheat- it was the loss of hope for a better normal in the short term.  And it just plain stinks.  

sigh.

The good news is that Livvy is doing much better without wheat several weeks later.  It also doesn't appear that we have lost any safe foods in the process of losing wheat- always a bit of a concern with a food fail.  

So where do we go from here?  One foot in front of the other, I suppose.  I keep searching for foods that don't make her sick, and doing my mama best to be creative with what we have for some perceived variety for her.  









Monday, November 5, 2012

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.

Tuesday, October 30, 2012

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.  

Thursday, October 11, 2012

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...

Thursday, October 4, 2012

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 :)

Sunday, August 12, 2012

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!

Saturday, July 21, 2012

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.