So the Cipro didn’t work.
If you are hearing a thumping sound as you read this, do not be alarmed: it is just the sound of my head hitting the desk repeatedly. Rory is growing by leaps and bounds. He is happy, and healthy, and exactly where he should be on all the charts that tell you whether you should be concerned about your baby’s development.
Except that his throat cultures keep coming back with things growing in them that shouldn’t be there, and the first round of antibiotics we tried, Cipro in all its powdery strange suspended-in-liquid-but-not-really-mixing glory, did nothing to stop them. The fine medical folks at Children’s are as baffled as we are. We’re not on well water and he gets mostly breast milk anyway. But we’ll sterilize our bottles every night, and use distilled water for the little bit of formula he gets. And now we move to nebulizers, and super spendy antibiotics, and give thanks once again for insurance. We’ll go back after he’s been on it for three weeks and re-culture and hope for a better outcome.
The CF care coordinator told me that they’ll do another sweat test at six months, and it’s not a big deal, she said it wasn’t, he doesn’t have classic CF. But then I reread the JPeds article that is pretty much the only medical document out there addressing diagnosis and treatment of CRMS and this sticks out like a sore thumb:
Infants with CRMS should be monitored because they are at increased risk for development of CF-like symptoms and because in some individuals, evolving signs and symptoms, new information about disease-causing CFTR mutations, or change in sweat chloride concentrations may ultimately lead to a diagnosis of CF.
Let me just tell you, that is not the kind of stuff that makes a parent feel more comfortable about the situation.
Whatever, he is fine, he is beautiful and perfect. But have I mentioned how much I HATE being at the front end of this thing? He’s part of the national study that will better determine treatment protocols for CRMS kids moving forward. I wish we had that information now.
Headdesk.
