First EE Clinic Appointment.

Bryce had a very lengthy 2+ hour appointment last week at the EE clinic at "The U" (University of Michigan). The boys have been seen by U of M docs for years and we've been happy overall. This was Bryce's very first EE-specific appointment and he was seen by a new pediatric GI and pediatric allergist.

Overall, the appointment went smoothly. The GI doc was very thorough, going over Bryce's history starting at infancy. She asked a lot of questions and seemed to take a lot of notes. Many of her questions I just don't have answers to-like things about his sleep habits or food habits. It's hard to know if his actions are behavioral or EE-driven. He's 3. Three year olds sometimes have behavioral stuff. (insert massively sarcastic icon here!)

The new allergist (Dr. G) was something else. He's not the one we've seen for the past several years (Dr. M), he's newish to The U and very much more agressive than Dr. M. He was ready to food challenge Bryce right then and there--totally against what Dr. M has been telling me. Absolutely no way was I going to food challenge Bryce at age 3 when he does NOT have enough labs to show that he's "not allergic" on paper. He informed me that if Bryce could eat egg that our  "quality of life would improve significantly". Really? What does he know about our quality of life? I think we're doing pretty well over here!

I let him have it. No way was I giving Bryce egg, especially after he'd eaten one TINY bite of a pancake at church that had egg & dairy in it and he got hives, sneezing and instant black eyes. This is the kid that reacted to AIRBORNE egg. He reacted by merely TOUCHING an egg carton. Thank goodness Dr. M will continue to be Bryce's allergist for his IgE allergies, and Dr. G for the EE.

Then, Dr. G informs me he works for the company that makes Neocate, the brand of hypoallergenic formulas that many EE kids have to consume to live. He tells me he wants Bryce to gain 1-2 pounds, hands me a pack of Neocate samples, and tells me to get Bryce to consume 8oz of Neocate Splash daily.

(screeching brake sounds echo through my head)

I tell Dr. G that Bryce will NOT consume this stuff (it's horrible, by the way) and that our insurance doesn't cover it (it's horribly expensive, as well). I ask why can't I just get him to gain a little through food? (umm, bacon comes to mind!). He kind of turns on me, from being sorta nice to mean, and tells me to "Get used to it because Bryce will be on Neocate very soon."

Ahem. Well, we'll see. Bryce is to have another scope in June (to be scheduled) and the results of that will determine the next course of treatment. One thing I've learned is that there is not ONE solitary treatment for EE. The disease is very different in each kid and thus, so is their treatment. I've talked to some folks who believe that going on a hypoallergenic formula is necessary to "reboot" the kids' system, and others who believe that going on that same formula will make the body react more violently when foods are reintroduced.  Brad and I are in the camp of "lets find his EE triggers and keep Bryce eating food"--we've worked too hard with him getting him to eat, to just take it all away.

For now, we've upped Bryce's rice milk consumption to 16oz per day, we've added his beloved "hotties" (hot dogs) and "circle-y" (bologna) back into his diet and allow him free reign over bacon consumption.

How big is Bryce, anyway? He's 3 years old, 40.5 inches tall and hovers between 38 and 39 pounds. He's in the same range as Brendan and Brett were at 3 and they didn't have all of Bryce's medical issues. I think he's doing just fine on the foods he can safely eat.

I won this battle, but the EE war is just beginning.