How Could an Accurate Diagnosis Still Be So Inaccurate?

Bright and early on Wednesday we had a follow-up appointment with the pediatric gastroenterologist.  This is the same doctor from the hospital; he apparently also has hours a few times a week in a town closer to us.  God Bless him!  When Mr. Charm needed a pediatric GI doctor, we had no choice but to drive to Little Rock – there wasn’t one in our area at all.  So this is a huge break for our family.

At 8:30 a.m. we were there, signing in for the appointment.  After a short wait, we were led back to be weighed and measured by the nurse.  Mr. Happy was up to a whopping 11 pounds 13 ounces!  He’s just over 23 inches long!  He’s growing faster than Mr. Charm ever did, that’s for sure.

She took us to our exam room, and we waited.  I fed Mr. Happy.  I fed Mr. Charm.  I fed myself.  Being on this allergy diet means that fast-food is out for the time being, so I had my old work cooler packed to the gills: cereal for me and Mr. Charm, bananas, apple, clementine, granola, almond milk for the cereal, utensils, and two bottles of formula made up for Mr. Happy.  I also had a hot cooler in the car with warmed chili for us for lunch, in case our day required we be out that long.  It was like packing for a moon landing!  So, we ate in the examining room because this was our normal breakfast time.

I kept Mr. Charm from unplugging the TV.  I kept Mr. Charm from unplugging the BP/thermometer equipment.  I kept Mr. Charm from pushing the exam table into the center of the room.  I kept Mr. Charm from climbing on the counter to play in the sink and grab the TV/DVD remote controls.  I kept Mr. Charm from turning the trash can over.  I LET Mr. Charm ride on the doctor’s round, rolling stool.  I LET Mr. Charm dig through the diaper bag. I gave Mr. Charm my money purse to play with.

In there I had 4 dollar coins, 2 quarters, 2 nickels, 2 dimes, and 2 pennies.  I grouped all the coins together with their like partners and counted them for him.  The dollar coins were all in a row.  He took a penny and put it at the end of the row.  Then he grabbed a dime and put it after the penny.  Then he took another dime and put it at the end of the OTHER end of the row.  Instantly he moved the dime out of the way, grabbed the penny, put it at the end of the row, and put the dime after that.

He lined things up in a symmetrical line, using like items.

That’s two major developmental milestones right there!

And just as he finished doing that, the doctor walked in the room.  So, I didn’t get to gush all over him like I wanted to, because it was time to ‘talk Mr. Happy’.  But I was still so proud I thought I would burst!

Turns out, the doctor wanted the follow-up for three reasons: 1. To see how I was doing eliminating things from my diet.  2. To see how Mr. Happy was doing on the Neocate.  3. To run another CBC blood scan to check for anemia, which, apparently, he was still suffering from when they took the last test in the hospital.  It was just doing well enough that they were confident it would keep improving, so assumed it would be safe to let him go home.  This was to make sure the assumption was correct.

OK, well, I happily told him we were doing great on the new diet, and that Mr. Happy was doing great as well.  I only had one concern, and it was that, starting Monday, he had started having some eczema on his cheeks and ears, which is where Mr. Charm first started showing eczema when he had his issues, and the fact that since Monday, Mr. Happy was spitting up a lot again.  We’d had a whole week where we didn’t get drenched after every feeding, so we noticed this symptom right away.  Combined with the eczema, I was starting to worry that Mr. Happy was reacting poorly to the Neocate.

Dr. G chatted with us a while, telling me that when I resume nursing Mr. Happy, I should make sure to come hang out in town that day.  You know, just to make sure we’re near a hospital…in case.  Comforting, right?  Then, in talking about Mr. Happy’s allergies he made a comment about “…even though the RAST came back negative…” to which I interrupted him.  Say what? Negative?? So, he’s not allergic to anything?

Of course, the doctor corrected me.  He is allergic, just not IgE allergic.  Well, yeah, I know that, but I assumed from the way we the instructions were given when we were discharged from the hospital that the RAST came back positive to those six things, and that was why I needed them to be eliminated from my diet.

Turns out, nope.

Those are just the six things the doctor picked for me to eliminate to begin trying to find Mr. Happy’s trigger foods.  He does have allergies, but they’re totally non-IgE mediated allergies.  The RAST was, in fact, clear.  So, I don’t have my clear-cut answer.

Hmm.  I asked him if he was sure, totally positive the RAST was clear.  He looked thoughtful for a moment, and said he would go double check in our records for me and come back.

He left, and a few minutes later the techs came in to draw blood.  They stuck a needle in his left arm.  Couldn’t get blood.  Stuck a needle in his right arm.  Couldn’t get blood.  Finally, they pricked his foot and squeezed out enough blood to run the CBC test.  It was painful to watch, and hurt my heart to watch him scream in pain like that.

After they left, we waited more.  Mr. Charm was impatient at this point; the appointment started at 8:30 a.m.  We were in the room by 9:00 a.m.  It was 10:30 a.m., which is a long time for a 2 year old to be confined to such a small space.  He started taking the trash can and opening the door, then pushing the trash can up and down the hallways.  I finally gave up and just followed him holding the baby, making sure he didn’t go far and didn’t run into or trip anyone.  What do you expect with a high energy 2 year old?

Finally, nurses started showing up trying to shoo us out the door.  I had to explain that the doctor said he was going to check on some test results and come back in the room to finish answering my questions.  Before any of them were able to check and get back to me, I saw the doctor himself coming out of his office across the hall.  He saw me, and from the look on his face I could tell that he had just forgotten that he was going to come back to see me.  They run a seriously over-scheduled operation there!  So we finished our consultation standing in the hallway, which, I’m sure, violates some kind of HIPPA law or something, but I didn’t care.  I wanted my answers.

He assured me that the RAST came back clean, and continued by saying “…but that’s common for FPIES kids.”

FPIES?  I had just read something about that syndrome the week we were in the hospital when I was googling MSPI to refresh my memory on it for Mr. Happy.  But, I didn’t really know what it was beyond a form of food intolerance.

So I was a bit stunned – I’d never heard anyone diagnose Mr. Happy with FPIES.  I said “He has FPIES?  I’ve heard of it but know nothing about it.”

The doctor told me what it stood for, and that it was, as he said in the hospital, a non-IgE mediated allergy.  Everything he said in the hospital is still true, yet, somehow, there was a miscommunication.  The diagnosis of FPIES threw me for a loop.  I had no idea what it stood for, what it meant, what the prognosis was, what the long-term effects were…nothing!  I didn’t know enough to even know what questions to ask, and the nurses were shooing me and the doctor was inching his way down the hall.

So, I gathered up our stuff and left.  I figured I could call him back and bug him over the phone if I needed to.  Besides, Mr. Charm needed to move!

So I stopped in a parking lot to set up to pump, and start googling FPIES on my phone.  In a short time, I’m calling the Geek to tell him the news, and tell him that I furthermore think Mr. Charm has FPIES, too.

What is FPIES, you may ask?  Food Protein Induced Enterocolitis Syndrome.  I cannot even begin to explain it as well as some other people have on the web, so I’m going to link up to them here.  The lady at My FPIES File Cabinet has written a terrific explanation of what FPIES is in that link, and also a terrific side by side comparison of IgE versus non-IgE allergy symptoms.

Perhaps the best thing I found, though, is this video of a little boy, probably just a tad bit younger than Mr. Charm, having a full-blown, classic FPIES episode.  It’s stunning video, let me tell you.

Then there is always the official websites for any condition, and Kids With Food Allergies.org has their own page of FPIES explanations.

So here we were, with this whole new diagnosis that means a whole new thing, and I know nothing about it and have to squeeze in reading on my phone about it in between taking care of the two kids and cooking an entirely new way.  Such fun.