Sundays with Gage- Finally, a diagnosis

So, last Valentine’s Day Gage was admitted to the ER, put on a ventilator, and transferred downtown to the Cleveland Clinic (my detailed post here).  After a week of testing we were sent home with no answers, just a long list of what it wasn’t.  Another trip to the ER in July confirmed to me (and Jason) that it was a milk allergy even though no pediatrician or specialist agreed with us.  We decided to keep him off dairy until he was a year and half or two hoping he would outgrow whatever it was.

But here’s the thing.  Even though I thought it was a milk related issue, the fact that not one of the dozen or so doctors thought so made me think I was wrong.  Which has made this a stressful year.  Every sniffle or cough had me expecting the worst.  It has made me a bit of a crazy mother.

On his 15 month check up I told Gage’s pediatrician that I wanted him to see an allergy specialist before we let him try eggs and then milk again.  She pointed out that his blood test had been negative and this appointment would really be just to make me feel better.  Despite her (expected) lukewarm response I made the appointment.  And do you know what?  I do feel better.

Within an hour they diagnosed him with FPIES (Food Protein-Induced Enterocolitis Syndrome)

Food Protein-Induced Enterocolitis Syndrome is a rare, severe food allergy of the gut. Classic symptoms to this allergy are delayed following food ingestion (~2hrs or more) and include profound vomiting (often to bile), diarrhea and dehydration. These symptoms can quickly lead to lethargy, change in body temperature and blood pressure, and in severe cases, sepsis-like shock. Immediate medical attention is needed for IV hydration and monitoring.

Finally.  A doctor finally listened, understood and diagnosed almost immediately.  There is no medical test to confirm, but every thing that is described in the pages of information happened to Gage and not one doctor caught it.  It is a rare condition.  We went to a large office and he said they only see 2-3 cases a year.

We still had the skin test done for eggs, peanuts, and shellfish and unfortunately, the peanut tested positive.  See…

So, the good news, we finally have answers about last year’s nightmare and I can stop wondering if every fever will point to a scary disease.  I finally feel validated in my concerns.  More good news?  FPIES is a condition that always corrects itself.  The literature says that by 3 years old 60% of children outgrow it, keep your fingers crossed for Gage.  The not-so-good news is the only way to confirm diagnosis or to see if Gage is better is to book him into Intensive Care and give him milk.  And then wait the rest of the day to see if something happens.  Not something we plan on doing anytime soon.

We are now armed with long-waited-for answers and an epi pen for the peanut allergy. I know he will outgrow at least one of these.  I can live with that.

I’m hoping that this upcoming Valentine’s Day will have a happier ending 🙂

A special thank you to Bonnie (Redlady’s Reading Room) who gave me the great allergist recommendation.