After meeting up with the grandparents (my Mom and the Geek’s Dad) and Mr. Charm, we left to go find some food for me to eat. We were quickly interrupted by a phone call from the allergists office asking if we were okay and where we were.
I was a bit confused by this, as I thought we had about 50 minutes before the next appointment.
Did you know that if you schedule an appointment in your iPhone calendar for 2:00 p.m. while in Central Standard Time, and then travel to the Eastern time zone, your iPhone will automatically roll the appointment time forward to 3:00 p.m.?
Yeah. Obviously, I didn’t, either.
Dr. S’s office was incredibly gracious and understanding about it, though! We raced back as quickly as possible and were promptly shown into an examining room.
If I had warm fuzzies about Dr. G, let me just say that I wanted to MARRY Dr. S’s entire office!
His receptionists were professional, pleasant, friendly, and just as sweet as could be.
His nurse rocked. our. world. She let Mr. Charm help take his and his brothers blood pressure (by pushing buttons on the machine), brought him a portable DVD player to watch “Finding Nemo” while we were in the appointment, teased with him, and just made everything easier for the kids. When it came time to mark them up for prick testing, she let Mr. Charm mark his other arm with a pen while she marked the arm she was testing, and made sure to let Mr. Happy have a marker to hold while she marked him, too!
Then we met the Doctor his-own-self. Tall, handsome, composed, and young. He was gentle, soft-spoken, precise, professional, warm, kind, and absolutely, hands-down, the most natural person with babies I’ve ever seen!
I know I’m totally off-topic here, raving about the doctor, but I honestly think every person in that examining room had a little bit of a crush on him! (Well, maybe not the Geek’s dad, actually. But the rest of us did!) It’s a shock to me that this man is still single with no kids – he has “family-man” written all over him. Any single ladies in Atlanta? I have JUST the guy for you!
Ahem. OK. Gushing over. Back to the appointment.
We discussed the boys and their histories, and then he prepared to do their prick tests.
He brought in the order sheet, handed me a marker, and let me mark which tests I was most interested in having run on the boys! Of course I asked his opinion, but it was nice to not be dictated to. In the end, we selected the following:
- fresh milk
- egg white
- egg yolk
- brazil nut
- fresh milk
- egg white
- egg yolk
- brazil nut
The ONLY test that came back with an IgE reaction was the egg white for Mr. Charm. MR. HAPPY DID NOT SHOW ANY REACTION TO DAIRY THIS TIME!!! One less Epi-pen to carry around?
Mr. Charm’s reaction was a 5/10. Dr. S uses the ‘new’ prick test measurement, and I’m not exactly sure how it corresponds to the ‘old’ measurement (1+, 2+, 3+, 4+). However, as I understand it, the prick test simply measures the sensitivity level of an allergen, not how large the reaction will be to the allergen. So, even if Mr. Charm is less ‘sensitive’ to egg, he may still have large reactions to egg…so, he still carries an Epi-pen.
However, Dr. S said that as soon as we were comfortable, we could begin our own home-grown version of allergy shots: make a batch of a dozen muffins using one egg per batch. Give Mr. Charm about 1/8th of one muffin on day 1. The next day, if he did okay, give him 1/4th. Still okay? Go to 1/2 the next day. And so on.
Start with baked egg, and if he does well, we will move on from there. This will build a tolerance level to his particular allergen, until he is no longer allergic! (I took allergy shots for years, and yes, they work!)
I’m excited by this, but I decided to wait (for now). Mr. Charm is going to start speech therapy next week, and I think it will be better to wait until he’s a little bit more verbal so he can better describe any reactions he is having before I start something like this at home.
Still – a plan! A treatment! Something I can DO!!! Awe. Some.
While we were waiting for the prick test to develop, and without being asked for it, Dr. S brought me two yummy little goodies: a revised ER letter for Mr. Happy describing FPIES, how it will present, how to treat it, and with his full contact information on the back, and a prescription for compounded Ondansetron, aka Zofran. This particular drug is the one that is typically given to FPIES kiddos when they are puking their guts up from a reaction in the ER. It helps stop the vomiting.
Dr. S thought that, since we live so far from, well, everything, it would be a good thing for us to have around.
LOVE THAT MAN!!!
I then asked him if he had any suggestions for pain relievers we could offer Mr. Happy, since ibuprofen and acetaminophen are currently out, and he suggested Doan’s and Trilisate. I’d never heard of either of those, but my Mom and the Geek’s Dad had heard of Doan’s; apparently it’s a very old OTC pain reliever that fell ‘out of fashion’ some years ago.
Doan’s is magnesium salicylate, which is basically aspirin, so I’m a little confused about that. I thought you weren’t supposed to give children aspirin. A tad more investigation is in order.
Trilisate is a choline salicylate/magnesium salicylate, which, same as Doan’s. Need to look into it some more.
But, hey! Options!!
Then Dr. S said something REALLY interesting!!! (Actually, in all fairness, Dr. G sort of mentioned it, but Dr. S really drove the point home.)
He asked if I was SURE that Mr. Happy couldn’t tolerate Neocate and Elecare. I had to tell him “Sure, I mean, he reacted to them.”
Then he said something SO obvious, SO totally plain to see that I STILL feel like slapping my own head and saying “Duh! Idiot!”
What could he have said that would make me feel SO obtuse?
Well, how about pointing out something I’ve said before: when an FPIES kid is reacting to something, and you introduce something new to their system, they’ll often react to it just because their body is already reacting.
Stay with me, now…
When we first gave Mr. Happy Neocate, what was he doing?
He was laying in a hospital bed, barely over a MAJOR reaction to who-knows-what.
When we first gave Mr. Happy Elecare, what was he doing?
Showing chronic reaction symptoms to the Neocate!
Which, as the good doctor made plain, he might NOT really have a problem with, but was simply reacting to because his body was ALREADY reacting to ‘something unknown’ in the hospital!!
So, we have formula trials in our future!!!
Whew! I have over 350 ounces of pumped breastmilk in the freezer at home, and will have at least another 100-200 ounces before I return to work, but I honestly am worried that that will not be enough to sustain him when I’m flying. So the idea that he might, just might, be able to handle the formula is a HUGE relief to me!
Dr. S even kindly gave us two cans of EACH formula to take home to trial.
LOVE THAT MAN!!!
Then he ordered a current RAST to be performed on Mr. Charm, so we had to get blood drawn for him as well. This was no problem. As I said earlier, Mr. Charm takes after me and is easy to draw blood from.
Dr. S wants a re-check with the boys in 6 months, and even KNOWING that he is our “new” allergist, our “point man” (so to speak), he said he’d be totally fine with us having our follow-up be with our allergist back home so we don’t have to travel again. SO thoughtful!
After meeting with Dr. S, all we could do was collect samples for the next week until our appointment with the nutritionist. Read about it (if you can handle it!) tomorrow!