I have to admit, I wasn't sure what would happen at this appointment or really why we needed to see a gastroenterolgist when Punky currently has a pretty healthy system. But it did make sense to me that we should at least establish a relationship with another doctor who might be of use to us in the future. The trickiness of FPIES is that a regular allergist only deals with a certain component of the syndrome. It is a lot like a food allergy, yet it is a reaction in the gut and non-IgE-mediated (which is what typical allergies are).
Our appointment was with Dr. Schwarzenberg at the U of M. Another FPIES mom had seen her as well, so I felt comfortable enough that she would recognize FPIES and have some insight for us. First of all, let me say that the paperwork for this appointment blew me away. They also sent along very explicit directions for getting there and parking. I was somewhat concerned with the driving; the U of M is a part of the world I don't venture into often. But I saw that there was valet parking, for the same price as the ramp, and figured I would just do that and ignore all the other instructions like, "we recommend you bring a stroller."
We arrived with no problem and I dropped the car off with the valet. Then I entered the building, carrying Punky, balancing the diaper bag, and wearing my puffy down maternity coat. There I realized my folly. We still had to go down to the tunnel and walk to the next building. For some reason, I thought the valet vs. ramp option got us much closer to our destination. After at least 10 minutes of shuffling through what seemed like a rat maze, I lugged Punky through the door, aching and sweating, and wondering if we'd ever make it out.
Fortunately, the appointment was worth the hassle. I went over Punky's history and we talked about my plan (or lack of) for trialing foods. Here is what I took away:
- Breastfeeding is great, but without Punky using an expensive (and possibly yucky-tasting) elemental formula, we're going to run into some deficiencies as she gets into her second year. She should take a multivitamin and iron.
- Our new plan for food trials is to give a small amount (an ounce) one day, and wait three days. Then give double that amount, and wait three days. Then give double that second amount (about 4 oz). If she is not reacting to it in the next three days, we can consider it a pass. I am supposed to keep going with this 9-day method with a variety of foods, maximizing the nutrients Punky gets.
- If I'm concerned about a speech delay, it's not too soon to get an assessment from a speech pathologist. Dr. S offered to set me up with a consult, and I declined for right now. It's a matter I've discussed with our pediatrician and we were going to talk about it again at the 12-month check-up. She did say that there were a lot of therapies for children with food issues, using toys and different things with textures in their mouths to get everything developing appropriately. She also noticed that Punky was making quite a few sounds at the appointment anyway. Perhaps an assessment would show that we don't really have anything to worry about in that department.
- I expressed my anxiety about trialing foods, risking severe reactions every time. She offered this advice: to look at food reactions not as something we're "causing." It's already in Punky's biology to react to certain things, and we're just experimenting to figure it all out. It did help me to look at it that way and to hear it from a doctor!
- She was concerned with MY nutrition. Surprise, surprise. It's true that I don't take care of myself like I take care of the kids. But I can see her point that as a vegetarian who has cut out soy and dairy and, ahem, is a little lax with vitamin-taking, I'm probably missing a few things in my diet. She also suggested I see a gastroenterologist myself for my on-and-off issues. I'm going to start a food journal for both me and Punky. It's going to be tedious, but it really may be the key to keeping us both happy and healthy.
I'm feeling more optimistic than I have in a long time. Dr. Schwarzenberg was so personable, and a great listener. She said a lot of things that were reassuring to me, and gave us some goals to work toward. We'll see her again in two months and hopefully we'll have a few more "safe" foods by then.