At the Allergist

Today we had a follow-up appointment with the allergist.  I was nervous, because I’d done as much reading as I possibly could in the previous 24 hours, and it appears to be quite common, at least, from the moms who report their experience on message board support groups for FPIES, that many doctors have never even heard of FPIES before.  Not just regular pediatricians, either.  Nope, full blown pediatric allergists have never heard of it, and will confidently say that a child cannot possibly be allergic to rice and send you home with no recourse.

So, I was nervous.  Turns out, I didn’t need to be.

I filled out the paperwork for Mr. Happy, as he was a new patient today, and under the “why are you here?” section I wrote “Possible FPIES”.  I had read enough to know that there are other conditions that seem a lot like FPIES, and that have similar symptoms, so I wanted to see if the doctor would help us rule something out, one way or another.

When the doctor came in the door she sat down and immediately said “FPIES, hmm?  That could explain it.”  Such relief washed over me, you’ll never know!  I wasn’t going to have to explain the condition to her, or convince her not only that it existed, but that my child may have it!  (Many moms on the message boards apparently do; they have links to the best medical papers to print and take with you to help bolster your case in that event.  Scary, huh?)

She asked a lot of questions, looked baffled a few times, once said “Do you mind if I call a colleague of mine, who I know is more ‘up’ on this than me?” – which I was okay with, asked if I minded doing a prick test on Mr. Happy, asked if I minded having a prick test done on me, even tested the pumped breastmilk I had in the car as a prick test on Mr. Happy.

In other words, she was as thorough as one can be with this diagnoses.

In the end, her biggest concern was that somehow, Mr. Happy is allergic to my milk itself; not to something in my milk.  I think that’s unlikely.  That can happen, true; but it is so rare as to be almost impossible.  Besides, I think Mr. Charm has undiagnosed FPIES, and he’s completely weaned and still exhibiting symptoms.  So, I’m not worried about that.

Mr. Happy’s allergy prick test came back with a big, fat positive on dairy.  In fact, when the serum started to roll off the welt being formed underneath it, it left a streak of welt everywhere it touched his skin. Even the doctor was a bit amazed at that.  So the Epi-pen we just got for Mr. Charm’s egg allergy serves double duty as an Epi-pen for Mr. Happy’s dairy allergy now.  Fortunately, it was the only thing he tested positive for in the IgE camp.

Breastmilk tested negative, and I tested negative for everything, too.

In the end, after two hours of non-stop working with the doctor in her office, she agreed with the FPIES diagnosis.  And that’s when I asked the question “What exactly am I supposed to eat?  I’m confused that he’s asked me to eliminate dairy, soy, egg, peanut, wheat and seafood from my diet, when the top most common FPIES trigger foods are dairy, soy, rice, oats, barley, chicken, turkey, sweet potatoes, green beans, squash, corn, and eggs.  If I eliminate ALL of those things…what’s left to eat?”

Her response was basically “How committed are you to breastfeeding?  If the formula works, keep using it.  It’s impossible to eliminate all of that from your diet.”

Sadly, on this one, I disagree.  On the message boards I read of moms who were down to being able to eat only THREE things, but they were still nursing their kiddos.  So, it’s not impossible. It’s just hard, and painful.

Still, I don’t see the logic of eliminating peanut and seafood, unless there is something I don’t know.  She didn’t have an answer, so I figured I’d have to ask Dr. G himself.

In the end, she wanted to check on his CBC levels (which were taken at Dr. G’s office yesterday) and send out a sample of his stool for blood testing.  She wants him to stay on the Neocate for at least 4 weeks before I start trying to nurse, and recommends I simply avoid dairy and soy.

The problem that I can see with that is that I was already avoiding dairy, and I rarely eat soy.  If Mr. Happy was responding to something in my milk so strongly that he ended up in the hospital, it was NOT milk, and was probably not soy.  So I’m left with not having any clue about what triggered the reaction in him.

So, I left her office feeling VERY confident that we have – finally – received the correct diagnosis for both our boys.  I stopped to call Dr. G’s office and left a message.  Hopefully, I will hear back from them tomorrow about what I truly need to eliminate from my diet.

Dr. M called me this evening to report that Mr. Happy is no longer anemic, his platelet count is still high, but it’s improved from the hospital, and he is showing evidence of growing new red blood cells, so that’s all good.  When the stool test comes back tomorrow for blood testing, if it is negative, great, and if it is positive, we’ll have to try new formula.  Ele-care is the other elemental formula on the market.  If that doesn’t work, I don’t know what we’ll do.

So tonight the Geek and I talked it over and agreed that FPIES is probably the correct diagnosis, and we’ll figure out how to deal with it together.

After the kids were in bed, I told him I wanted him to watch the Jack video I linked to earlier.  In case Mr. Happy ever has a full-blown FPIES episode, I thought it good that we both know what it looks like.  With construction, our joint computer is set up without any extras – like speakers – so he decided to just watch it on his phone while he took his bath.

I finished cleaning the kitchen and went to go see what he thought about the video.

“Remember that night that Mr. Happy was dry heaving and we called the after-hours nurse line?” he said.  I didn’t.  But when he started talking about it, the memory came back.  “Oh my God!”  I said.  Mr. Happy already HAD a full-blown FPIES episode and we just didn’t recognize it.

One night, when he was about 3 or 4 weeks old, we were sitting in the office/dining room one night before bed.  Mr. Happy had finished nursing, and the Geek was burping him for me.  Suddenly, he spit.  Only, it was far more than normal spit up.  I wasn’t convinced it was vomit, because it didn’t projectile the way my experiences with vomit have me believe is the only way you can vomit.  But it was an obscene amount of spit up.  Then he started hacking, coughing, his little body positively jerked with the heaving he was doing.

It was not normal.

I tried googling the symptoms but found nothing, so we called the after-hours nurse line at Dr. A’s office.  K, her nurse, listened to us describe it, and said, basically, that it sounded like something that just happens sometimes with babies.  They puke for whatever reason, and then they’re all better.  Just keep an eye on any fever.

The Geek didn’t buy it at all.  I didn’t buy it completely.  But we had no idea what else to do.  So, we kept an eye on him that night, and watched him more closely for a week after that, but it never happened again.  So, I forgot all about it.

Thank GOD the Geek didn’t!!

After Mr. Happy heaved for about ten minutes, it was like he crashed and just passed out.  But, it was bedtime, so we just figured he’d gotten it out of his system and had gone to sleep.

After watching the video tonight, the Geek said it was like watching an older version of Mr. Happy doing what he did that night.  Thinking about it for all of 2 seconds, I have to agree.

Then we started talking about how Mr. Charm sometimes will be playing happily, smiling, being sweet and adorable, and suddenly turn into Mr. PITA for no reason.  We always say “He must be tired”, because it’s usually about three or four hours after he wakes up and he should be heading for a nap about that time. But think about it – what happens right after he wakes up? We FEED him.  And within two hours, he’s acting like someone possessed him, and then he crashes, or sits around listless and lethargic.

Because he doesn’t vomit, and we had no reason to, we never connected those things before.

But since Mr. Charm has been alive, he’s only had one or two months where his stool looked solid and firm.  The rest of the time, it’s incredibly loose.  In the hospital, S came up on me as I was changing Mr. Happy’s diaper one day and asked “Did he have another diarrhea diaper?” and I asked “Another?  He’s had diarrhea?”  She said that every diaper he had in the hospital had been a diarrhea diaper. I had no idea.  The Geek had no idea.  We thought that was normal.  Because every diaper we’ve ever changed on either of our sons, not counting the 1-2 months where Mr. Charm’s stool was solid and firm, looked exactly like the diaper I had just changed.

So both of our boys have had non-stop diarrhea since birth.

Frankly, I’m horrified.

I can’t believe we didn’t notice more was wrong with Mr. Charm before this.

As the Geek pointed out, though, once we eliminated dairy, soy and egg from his diet, he improved so drastically that it was easy to assume he was ‘all better’.

And it’s not unheard of for the ‘terrible two’s’ to start a little earlier than 2.  We just groaned when we told people that Mr. Charm started his terrible two’s at 14 months old.

And toddler’s are notoriously picky.  So I’ve been chalking up his lack of appetite to that for the last 6 months.

I feel awful, but the Geek is right – it’s very vague, and without knowing FPIES existed, how would we have made the connection?

But tonight was like a lightbulb going off over both our heads, and my fabulous husband, with his trouble-shooting mentality came up with a game plan for us.

The whole family – him included! – is going on the worst diet in the world.

We haven’t finalized it, yet, but here’s what we’ve come up with so far.  We will eat the following things for the next 4 weeks:  beef, white potatos, carrots, lettuce, spinach leaves, cucumbers, tomatos, bell peppers, watermelon, cantaloupe, blueberries, pineapple, coconut milk, apples, salt, pepper, basil, oregano, olive oil, coconut oil…and, I’m sure we’ll figure out a few more fruits and veggies to toss into the mix.

We will keep a food/behavior journal on both Mr. Charm AND myself (since after learning about FPIES I suspect I have an intolerance to something, too) and if, after a month, Mr. Charm is still showing symptoms, we’ll eliminate the most likely candidate for two weeks and go from there.  If he is, actually, improving, then I will start nursing again and start a food journal/behavior journal on Mr. Happy.  After two weeks, if he’s doing great, then we’ll start adding one new food a week to our diet.

Sounds like hell, right?  But the Geek is right;  it’s the only way to be absolutely certain we’re finding the cause and fixing it.  They actually have a name for this, and I think I mentioned it before.  The TED – Total Elimination Diet.  It’s well known, and Dr. Sears himself endorses it.  You want to know what is on it?  Turkey, rice, sweet potato, squash, and peaches.  Yep.  Only 4 out of 5 of the very things that are most likely to trigger an FPIES reaction in my son.  So we’re making our own elimination diet, and it’s going to be miserable, and we’re all going to be sick to death of food by the end of it, but we will, by God, fix our babies.