Good evening (UK), @Helmut. Thank you for your kind words. We are hoping to be on the Omnipod within 2 months and Niamh has an I watch and iPhone for school and messaging. Can I use the newest Omnipod version or must it be an older model? We are very lucky that in the UK we all have health care free to all based on our tax system. I’m overwhelmed by the altruism of people like you, @Terry4 and @rcarli giving your time, expertise and experiences purely for the good of others. A huge thank you from us within the community. You seem to all be highly progressive, experimenting at the vanguard of what technology and diet can do to improve health for T1D individuals. I do have one question that seems so nuanced I can’t find the answer, so here goes:
Niamh is doing amazingly well, but what is less desirable - 3.5 for 2% of a day or 11.5 for 2% of the day. In the UK there is a strong aversion to anything under 4 (72) for anytime at all…??
I think with a lot of doctors they all have a tendency to have an aversion to anything under a 3.9 (70). Probably especially so with kids.
It depends how well you stay in an accepted TIR and which endo you have whether they are happy here or not. But I have a tendency to think they are going to especially be conservative with kids.
The worry is under 3.9 (70) means you are closer to under 3.6 (65ish) which means you are closer to the low 3’s (50’s) and they really hate the low 3’s (50’s). And with kids some (not all) that will not speak up about dropping right away, they will not want to see the low numbers at all. You know kids, they will want to wait until they get back into a room in few seconds, or finish kicking the ball or my friend is leaving etc and put it off a few minutes (as adults do too, well at least I have). They do not want it risked with kids.
I assume this means that 98% of the time she is in range. Standard range often mentioned is 3.9 - 10.0 but you and she can set it at whatever is right for her. Neither 3.5 or 11.5 is a problem. I would make sure that at 3.5 she has access to a quick acting carb, is aware she is nearing a hypo and can stop whatever she is doing. I guess if i were in the middle of a group activity I would prefer to be at 11.5. It shouldn’t result in long term complications over time.
Thank you @Marie20. You’re spot on about latency in children (& adults). By the time we spot the sudden movement. Siobhán & I converse on a response. Send to Niamh via phone and then to her watch. Niamh reads it. So you’d assume she would give the sweets or whatever immediately? No. She was in the gym, doing art, singing hymns etc etc. We then have a latency of 5 minutes which then means we’re in hypo mode rather than a gentle rise. It’s never for long as with our settings on 5.5 we spot the low and inform her before were even in a hypo. You’re also spot on about medical professionals being averse to hypos.
What I can’t get is why?
If Niamh (9) is at a 3.5/3.2 for three minutes it seems to have no effect on her at all. But I’m reading here that an 11.5 for anytime will have long term complications. It leads me to believe a short hypo is not necessarily more dangerous or damaging than an extended hyper. Just can’t find any data to support this hypothesis.
The dangers are different. A short, sharp hypo when driving for example can be very dangerous. Being slightly low in a controlled situation for a couple of minutes may present only minimal risk to your daughter.
Everyone and every situation is different. It’s possible to suffer complications even with well controlled diabetes and it’s possible to escape them even with years of out of range blood sugars. All we can do is try our best and hope.
Maurie
@Eddie1, OmniPod DIY Loop only works with the older model. I don’t expect that there will ever be a DIY Loop for the new model. My understanding is that the new model cannot be hacked. It would be nice if I was wrong on that. The new model will require software that is approved by regulators. There is a good chance that with regulator-approved software the target range no longer can be set to normal (= non-diabetic).
@Eddie1 - What @still_young_at_heart (Maurie) said! You’re basically trying to reduce the risk, but there are no absolutes. For my first 25 years, I didn’t have a glucose meter and was routinely over 200 mg/dl or 11.1. The last 21 years, I have had much better control. Today, after 46 years I seem to have virtually zero complications. Others, have had great control and sadly many complications.
Some of the concern with hypos are driven from a slightly older school of thought, but with growing kids, unanticipated hormones kicking in, and the “invincibility of the young” attitude, can sometimes put a PWD in a dangerous situation. Therefore, docs will want to be conservative with hypos. As you gain experience, you will be able to better judge how concerned to be.
One thing to note is the lag between treatment with fast-acting carbs and what the CGM records. It is said that the CGM will be approx. 15 minutes behind.
Overall, though I agree with everyone else, you are doing great!
YogaO, thank you for your honesty and sharing. I can’t believe how difficult it is to determine whether Niamh being 3.8/3.7 for 5 minutes is better than being 10.8/11.8 for 10 minutes. I totally get what you mean regarding risk being highly contextual to age, circumstance, and situation.
Siobhán and I have our lows set at 5.5 and with the haptic taps on Niamh’s wrist from her watch the lows are being treated almost simultaneously as they fall below 70. So, it is literally in and out. We’ve added as much tech and protocols as we can.
My query is driven by conventional medics who want to keep T1Ds higher and sod the consequences (excuse the loose translation) and some of the highly intelligent and experimental members of this forum who seem far more worried about a prevailing complacency regarding highs and a much less fear of lows…just fascinating to see two groups of people approaching it from two contradictory perspectives. I suppose the former is worried about falls, crashes (literally and medically) and the latter are more concerned about their long term health complications and able to manage the present risks. We are achieving a much lower A1C with a few more hypos a day, still less than 1% but rather that than sit at a 170 or 180…
Thank you and others on this thread for an enlightneing and informative discussion.