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/