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.