This afternoon we headed over to the Allergy Clinic after being referred to them 3 months ago. You’d think I would have learned from previous experiences but I have now officially learned that I should never go to an appointment with high expectations…because I will always be disappointed.
I didn’t think she’d have to wear a gown again any time soon, but as long as it’s not surgery related I’m cool with it (plus she looked really cute). After lots of waiting, the “doctor” came in to see us (I say doctor because I was told that there were residents working with the doctor and as you will find out later I never figured out who the presiding doctor was). I explained her entire food allergy history and that she has conveniently been having mucousy stools (and one bloody one) for the past 2 weeks.
They decided to do 3 different skin tests. A skin test consists of a thing with eight prickly prongs that is dipped into 8 different allergy oils and then pushed onto your back, making little pricks in the process. It has to sit for 15 minutes and then the doctor comes back to see if there were any reactions.
Averi screamed when they did this and I couldn’t figure out how to console her because I couldn’t pat on her back. She finally calmed down and the doctor came back to read the results. I was so excited because we were finally going to know what foods bother her and get to the bottom of everything once and for all…
Nothing! Not even the control histamine had flared up (second one down on the left for tray #1). The only thing that even sort of reacted was the strawberry (top one on the left for tray #9). Tray #3 was egg, cow’s milk, wheat, soy, peanut, cashew, shrimp, and oat, and we got NOTHING!
This was the part when a different “doctor” (they all looked young, inexperienced, and kept leaving to consult with the other “doctors”) explained to me that food protein intolerances show up as the mucousy stool (already knew that from her milk protein intolerance) and that there are absolutely no tests for protein intolerances – other than elimination diets.
They told me that oat protein can be a problem and that we should eliminate it for the next week to see if her stools get better. We thicken all of her food and formula with oatmeal so I asked if I could use rice instead. They informed me that rice protein can also be problematic and that I should not use any cereals. So how exactly am I supposed to feed my daughter?
Then it got even better. They informed me that if eliminating the oat doesn’t have good results we will have to put her on just Elecare tube feeds for several weeks and then add in one food a week. I honestly wanted to cry. Averi did so well at OT this morning and is finally making visible progress after 8 months of OT and we might have to completely stop oral feeds? Shame on me for getting excited that something good was happening, for thinking that we were out of the “one step forward, 7/8 of a step back” phase.
I was so upset that it wasn’t until I got home that I realized they never told me if we should stop feeding strawberries to Averi. Just to rub salt in my wounds, the fruit leather that I just bought this morning has strawberry in it. I will be calling GI to get a more professional opinion as to what we should do (and you know that means I’m desperate).