Hello everyone
Aymes, wishing you luck with your request -- it sounds like you have a good case, but I know very little really. The chap Bev suggests is apparently wonderful, and it's not like you don't have something to work with, you do. And remember that if the consultant says it has to happen, the local authority can't refuse it.
Bev, you are doing SO WELL. From now on out for a good while, you will meet situation after situation that is new, and the most exhausting thing is dealing with a new thing time and again. But you're using your resources in all ways, and getting great results -- already! Wonderful.
We were told an hour lead-in for a change in basal to have effect. In practice we think it's more like 45 mins for us.
On another note, had another good hospital visit yesterday. They didn't do HbA1c -- only 6 weeks since last, but looked at his spreadsheets and thought things looked marvelous, we were using the pump intensively as intended, and achieving great results. Consultant said that maybe one or two teenagers in their care would be achieving the numbers E is, SO he was very keen that E now learn to relax a little. Took a few mins to say exactly what Mand said a couple of posts ago: watch the urge for perfection. This is something I need to listen to as well. Got the DCCA (can't remember if this is the exact acronym) graph out and showed how a reduction from 9% to 8% is very significant for long-term risks, and that a reduction from 8% to 7.5% is fairly significant, that 7%-7.5% is a small but probably worthwhile reduction in risks, but that below 7%, certainly below 6.5%, the graph is practically flat.
I've seen these figures before of course, but I think the consultant's point was that striving for the tightest control possible is counter-productive, that quality of life etc must enter into it. And he was keen to make E look at quality of life. Which has actually been good for him, I think, but the consultant rightly intuits that E is an achiever, and ambitious, and a perfectionist in some ways, wanting to get things 'right' (where does he get that from I wonder?), and is heading him off at the pass. A good doctor.
Other useful thoughts:
1) the erratic rise and/or fall between 7-9am is down to growth hormones as we thought, and it is usually quite unpredictable. No kidding. So yes it will sometimes rise and sometimes fall, and that's that. We just have to react to the situation as it is, and don't expect the basal to be able to tackle it in detail.
2) We are going to get the use of a CGM for at least a week to try pasta lots of times, to see if we can track it all through without this getting up every hour on the hour business...As suspected, no suggestions for regimes here, but a 'you're doing well, keep going' thing.
3) At our request, the consultant had a quiet talk with E about his developing fear of night hypos. E is afraid he will die in the night, because he has never woken up from a low number, rather we have found it in our system of checks. The doctor spoke of the likelihood, his own experience, and what would happen if a low did occur for a while. He said he could only talk in terms of probabilities, and that what is most likely to happen if he were low is that he need the help of someone else, eg his parents or a friend or partner. And that this is the way it was. These are hard things to know, for us and for him, of course. We are coming around to the truth that E can go very low sometimes, lower than would be expected from the situation, though apparently with no ill effects eg little muddling or stress...This is particularly true of the low numbers, strangely. So the doctor also said that if this at all becomes a pattern, then CGM may be necessary for him to stay safe. So. We'll see.
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So at the end of the day: we fervently hope and believe that an effective loop system will be available soon. My gut says E will not really rest well (not to speak of us) until this time. Perhaps even before he goes to college, in five years?
Finally: normal meal last night, and all slept LIKE LOGS. E on 12mmols this morning, after going to bed on 7.5mmol. Sigh. Time to look at that nighttime basal AGAIN! Had thought it was sorted for a while. But NO point in messing with dual waves when night basal is not secure.
Over and out!
Thinking about everyone: always good to hear from you.
xxoo
