Once again, we’ll wait and see…
Catherine had a severe respiratory attack on July 5 after going out for a bit of ice-cream to close the holiday weekend. We wound up riding via ambulance to the ER. Happy Independence, huh? Suspecting the ice-cream we let her taste, we asked her pediatrician to run an allergy panel. Did you know you can do that in a blood test now?
A Friday later, Brian called me at work. He always starts his calls the same, “You in a meeting?” I guess he’s learned I usually am.
“Yeah, just finished though, what’s up?” I asked thinking about the next thing I needed to do.
“We got Catherine’s allergy report back.”
“Yeah? What’s it say?”
“You got something to write with?”
Brian proceeded to read a list of NINE foods that showed up as allergens. Trouble is, one of them was milk. Trouble with that is that the formula for the ketogenic diet she’s on to keep her seizures under control is based in, you guessed it – milk!
I had a bit of a freak-out. If I look back and observe my behavior after that call, it was a bit ridiculous. I wandered from person to person at the office telling them this news. What was I seeking? Some understanding. The problem though was that try as they might – and they did – there was no real way for them to understand all the concerning implications running through my mind. I needed to talk to a friend who had a kid like Catherine.
The special needs world calls kids without special needs “typical.” Sometimes the parents of typical kids understand my laments. But sometimes, I need a mom of a kid with special needs. This was one of those times. It’s not that my colleagues didn’t get it. I think they actually did. But it was my lack of feeling understood. The lack of relation that made me not feel in my bones that they felt my fear in theirs. What’s that about? It’s certainly not fair to my typical parent friends. And, frankly, it puts a lot of pressure on my special need parent friends. I’ll have to keep thinking about that some.
The good news is that we just met with Catherine’s allergist this week, and he sees no reason to take her off her KetoCal, the formula designed to control her seizures by keeping sugar and carbs away. I actually couldn’t believe a med school degree was required for this when he said, “The way we diagnose an allergy is to have a clinical reaction to a food and a blood level response. She’s not had a reaction to milk for years, so even though her blood level indicates she might, we would not call this an allergy.” That’s so flipping obvious that it made me laugh at myself for that ridiculous day I ran around trying to find someone to understand. Had I just been still for a moment, I’m sure I would have understood in my very own typical mom and special needs mom brain.
So, we wait to see about the other 8 allergens. We’ll think of Catherine as allergic to peanut, egg and soybeans. But mostly, we’ll just wait and see.