I don’t know if I’m looking for advice or just need to vent before I explode. Maybe I need a little of both.
My daughter aged out of the ped endo clinic she’d gone to for 7 yrs. We live in a rural area so seeing an Endo means travel. We’re also limited by a short list of in-network providers. We started in the closest city with an Endo who was supposedly really good with T1s. He was not supportive of pumps/CGMs at all. His goal for A1c was “somewhere around 8, but not below.” Say what? Obviously he wasn’t a good fit.
So on to Endo number 2, also supposedly good with T1s. His list of requirements sent via mail (1st warning sign?) Included 30 days of paper logs. No problem. We’ve always had to provide paper logs. We step off the elevator directly into his waiting room, where 5 (yes 5!) amputees in wheel chairs are the first patients we see. I’m trying to stay positive, so I’m telling myself these people are here because they’re finally getting good care. We wait an hour past our appt time & finally get called back. The endo comes in apologizing for the long wait, spends a couple of minutes looking at the last 3 days of logs, pulls out a calculator & starts tapping on it. He then asks to see the pump & starts deleting/changing settings.
Is this normal for the T1 adults here? In 8.5 yrs of pumping no one has ever touched my daughter’s pump, much less deleted anything on it. She’s very OCD about her devices so I was waiting for the meltdown. It didn’t happen until we got back to car, thank goodness.
The results of the changes:
Target was changed from 120 overnight/80 daytime to 150 overnight/100 daytime. Supposedly this is to keep away all those nasty lows she hasn’t been having. Anything under 80 is a low in his book.
He changed her ISF from 40 overnight/30 daytime to 22. This caused some pretty bad lows the first full day (in the 30s & 40s, which we haven’t seen since we threw away the NPH & started pumping). She changed the ISF back to the previous settings.
He raised her highest basal from 1.175 to 1.6. I’ve mentioned before that my daughter is an odd case. Too much basal causes stubborn highs instead of lows, so the first day she was stuck in the 400s for 4 hours before she lowered the basal & started dropping. She has now changed all settings back to where we started.
I’ve heard the transition from pediatric to adult care can be hard, but I didn’t expect it to be a train wreck. Is it just a stroke of bad luck that we’ve managed to find 2 endos who think A1Cs in the 8s is good control? FWIW her A1cs have never been above 7.5, even during the worst of puberty & PCOS.
Any suggestions for our next try? Surely there has to be an easier way to find a good Endo? I found her Gyn through a search on PCOS diva. So far, I haven’t been able to come up with anything like that for endos. Our primary doesn’t recommend any of the ones nearby us even for T2, so she’s no help.