This is, as always, my attempt at accurate recollection, colored by all of my own weirdness.
[Summary of recent events: for five days Tab’s BG was > 300 most of the time/never went under 200/often spiked into the 400’s; the endo on call said we didn’t need to do anything because he had no ketones; I contacted the CDE to confirm that this was correct; the CDE confirmed this (twice) with the endo; I wrote to assorted trusted DOC tribespersons to see if this no-insulin-until-ketones seemed right; DOC tps universally replied, no. I asked the CDE again; she offered to connect me with the doctor next week; the DOC tps were pretty much universally like just give him insulin and see what happens; I was all (50% goody goody, 50% fraidy cat) but the endo must have some reason why it is better to not give insulin; the DOC tps were all the endo doesn’t know you and that you know how to keep him safe; and no endo knows what to do with the TrialNet people. And I was all but I don’t want her to think I’m the kind of mom who thinks googling is equivalent to attending medical school. Then XYZ magical manifestations happened and the endo invited us to come in immediately for an A1c and insulin dose lesson. We did that this morning.]
It was great. The endo spoke frankly about how no one knows quite what to do with the early-diagnosis TrialNet siblings. She said she planned to recommend Tab start Lantus, but if we preferred, we could also wait, because, who knows if there’s any benefit as long as he has no ketones and feels okay. I said I thought it seemed better to take a small dose that could offer some cushion or support to the remaining beta cell function, maybe make that remainder last longer. She said that might happen, but is not proven, and that’s why there is no protocol for these TrialNet kids; years from now there will be a protocol, but for now all our people can do is cautiously try things. She offered 5 – 10 units as a very low, safe starting dose. Tab agreed it seemed better to do something instead of nothing. We all agreed to start with 5 units.
I gather 5 units is a minuscule Lantus dose for someone six feet tall. This dose is probably the equivalent of applying Chapstick before skiing or wearing a sweatband to a tennis match. Maybe not necessary but possibly beneficial and almost certainly not harmful.
After the Lantus plan was set, a CDE came in and taught Tab how to use a Lantus pen. Two nursing school students observed as Tab velcro-strapped a glossy beige Velveeta slab to his upper arm and injected, counting to ten before releasing the plunger and removing the needle. For souvenirs, the CDE gave Tab two Lantus pens, a Sanofi coupon card, a box of needle tips, and a really nice ice pack.
We start Lantus tonight. Thank you to all who participated. It is a relief to have something to do.