Patch Test Today

Today was the big day.  I took my little lunch cooler full of cooked chicken, turkey, rice, green beans, peas, banana and quinoa to the allergist.  He supplied the milk, soy, oats, corn and wheat.  In two days we'll hopefully see some results.  Jake was a trooper.  Clapping and smiling in the waiting room.  Being as still as a nine month old can be in the exam room where he got the patches applied.  Now we wait.  He doesn't seem too bothered by them yet.  I'm not sure what exactly to expect.  Based on my diet I think milk, wheat, quinoa, chicken and turkey will be OK.  That pretty much sums up my diet these days.  I'm expecting reactions from peas and beans, due to some tummy pain a few weeks ago.   Definite reactions from rice, oats, corn and bananas. 

But then I wonder.  What if they come back OK?  What if it doesn't work?  I KNOW he had reactions to these four.  Rice and oats were the worse.  I'm counting down the hours until Wednesday morning.

Here's the proof with the patch...

In other news, I think mangos are going to be a pass for us!  No reactions at all.  We did freeze dried mangos for 5 days.  I stopped trialing for the patch test.  I would like to give him some fresh mangos.  Maybe this weekend.  Then I'll call it a definite pass.

The Allergist

I think our circle of doctors is now complete.  We met with the allergist recommended by Jake's GI doctor yesterday.  He was fantastic.  He listened, he typed as I spoke, writing everything down, and he listened some more.  He spent almost an hour with us.   After hearing our story, he said it sounded like FPIES.  He has one other FPIES patient!!  I was sad there's another patient, yet thrilled he's already been through this.  His other patient is almost two years old. 

He seemed so knowledgable and immediately gave us a plan.  We are going to do patch testing the first week in November for all the main trigger foods for FPIES, and also quinoa.  He agreed that quinoa would be a good grain to get under our belt.  Especially since I eat it almost every day now that rice is gone from my diet.  He isn't reacting at all to the quinoa in my diet.  He said to continue to eliminate Jake's offending foods from my diet.  He asked how I felt about nursing until at least 18 months.  I said I would.  He'd like breastmilk to continue to be Jake's main form of nutrition.  No cow's milk or milk alternative until then.  His other FPIES patient has a trigger of milk, so I think he's really leary of the milk.  He said if I want I can try Neocate or Elecare, however there are corn solids in those formulas.  And with the ascorbic acid fail, I'm scared to try anything with corn in it.  I will continue to breastfeed until 18 months for now.  He asked that I start taking a prenatal vitamin again.

After the patch test he will determine what foods we should start trialing next.  We won't trial any of our failures until Jake is 2 or 3 years old.  He will do the trials in his office.  He gave us a plan if we have another full blown reaction.  Since that last reaction was not as severe, he said we can monitor at home unless Jake becomes unresponsive, turns a different color, especially around his mouth, or is completely listless.  We are to call 911, have them start IV immediately, route us to Phoenix Children's Hospital, then he will consult with the ER.  He also prescribed the epi pen in the condition Jake is having an anaphylaxis reaction.

I left his office feeling very confident with his care.  He said to google "fpies" the few top links are good ones.  We all know I've already done that... to an extreme.  He said he tries to stay on top of the FPIES research.

I feel good.  I feel like we've really lucked out with our doctors.  I've read so many stories of families struggling to find doctors who even know what FPIES is, let alone how to treat it.  We have a plan.  That's all I need right now.  I know things are going to get harder once Jake gets a little older.  I'm enjoying this calm we have now.  A few good doctors, a plan, five solid foods, and endless milk supply.  Jake is thriving and happy.   

The irony is... Jake failed ascorbic acid today.

So after freaking out over Jake's spit up incident, we failed ascorbic acid.  At least that's what I think we failed.  I picked up some prune juice with the ascorbic acid in it.  I was a little leary, that's two things we haven't tried.  I didn't want to do them both together.  So I thought first I would try some jarred pears that contained pear concentrate and ascorbic acid.  He has fresh pears almost every day.  He has had jarred food a few times before he had any FPIES reactions.  This was probably his third time having it.  Three.  It's the magic number.  He ate the whole stage 2 jar after his nap today.  One hour later (less than normal reaction time of 2 hours) he vomitted.  Then he went into his zombie state.  I was very confused.  This wasn't his textbook reaction, but it was definitely a reaction.  He only vomited once.  Then it was the lethargic, red rings around his eyes, stiffening with stomach pains every once in a while, then back to being lethargic.  Even his brother who always puts a smile on his face, got nothing.  Every once in a while, he'd look at me with this pitiful, pleading eyes, rubbing his face, obviously in pain, then surrendor and just lay there, unmoving.  I kept waiting for the vomiting to start.  I kept wondering if I should take him to the ER.  I kept thinking... when is he going to start the full blown reaction?  I always thought his lethargy was caused by his extreme vomiting.  After today, I'm sure it's not.  So what's going on inside his little body that makes him react this way?  What puts him in the zombie state?  After about 90 minutes it was over.  He was asking to nurse.  He nursed, fell asleep for about 45 minutes, then woke up like nothing happened.  I googled ascorbic acid.  The man-made version is derived from corn.  Is it corn then?  Then I thought... I just bought a bag of corn chips a few days ago.  I've eaten a lot of them.  Bad, I know.  Maybe that's why he wasn't sleeping well the past few nights?  Maybe that's why he spit up?  I think I may drop all corn from my diet.  I mean all corn, even corn syrup. 

FPIES is like this giant puzzle that I feel like I never have all the pieces to.