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.  Naïvety?  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???!!


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.  


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.  

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