continuous glucose monitors?

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Patricia

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Hello all

I'm new to this site and diabetes in general -- mum to nearly thirteen year old boy, diagnosed type 1 in mid-November. We're all coping reasonably well, though not without so many troubles and huge stress along the way, as I know everyone knows about. Really hard. However,...Just starting ratios, and so far all looking *finally* more settled.

My question is: why do there seem to be no continuous glucose monitors about? I'm amazed that it's not coming up here or on UK sites? In the States it seems to be all over the place, and while I understand that there are disadvantages and inaccuracies (calibrations, time lags...), it seems so strange not to even be able to locate the state of play here in the UK. Are they being used? Where and for whom? Are they coming down the pike? Is it, like pumps, all about funding?

Thank you for any thoughts on this. All the best to everyone.
 
there was some mention of this in the last Balance magazine but i think it comes down to the meters at the moment are only any good for spotting overall trends rather than giving any accurate blood glucose reading and are only used for short periods to give the health team a better idea of any possible oddities

the recommendation when using one is to continue with normal meter readings so i think that suggests to you their usefulleness for full time and sole use... i believe there is some work being done on them to make them more useful and the other alternative i remember reading about in recent years was using an optical method to analyse the liquid within the eye to ascertain blood glucose readings, i liked the sound of this one!
 
i read this too - although someone told me it does mean having something the size of a grain of rice inserted in your eyeball??? still might be worth it for no more finger prick tests.

i think the constant glucose things are all the rage in the states but are not available on the nhs at the moment. And my DN said they would still encourage manual testing as, like kincaidston said, the current models are unreliable. im sure theyll refine the technology at some point in the future (and make them smaller!!) and we'll get them one day.
 
The sensors aren't avaliable on the NHS at the moment, NICE would need to produce guidelines similar to the pump guidelines before they became widely avalaliable.
I think there are some people using them who self fund. As Viki says alot of people in the US say that they are not that accurate.

You can get them for a 3 days from most clinics. i used one for 3 days in November and it was very interesting. My DSN suspected that i was having night time hypos. the CGMS results were very interesting and showed i wasn't having hypos at night.
 
there is another hand held version that was being developed that you just looked in the viewfinder, it flashed a light (probably laser) through your eye and then checked i think the refraction of the fluid in your eye, think there is some tie between the refraction and blood glucose levels
 
Thanks for all this -- it's interesting I think. The big thing seems to be accuracy and time lag...but if you read some american forums, some people are just *delighted* with them, to follow larger trends in bgls, even though finger prickings are still necessary.

I guess like so many things, CGMs haven't been deemed efficient enough and vital to diabetes care to fund. Perhaps it's just a question of staying 'on the case' and making sure that when CGMs *are* improved, the UK gets them as soon as possible....

I'm interested to know that they are available at clinic -- I might ask to see one!

Like the idea of infra-red, and eye fluid, etc.... I've read about these too. Maybe just maybe.

But you can't live for the future, can you?
 
Just as an aside, I was astonished to learn that at the beginning of the 20th century it took 20cc of blood to test for blood glucose! Better methods brought this requirement down and was fundamental to the discovery of insulin as it meant they could test more easily and accurately in their experiments.

Yes, I have been reading 'The Discovery of Insulin' by Michael Bliss! I'd thoroughly recommend it as it's a real eye-opener and sobering thought of how lucky we are nowadays🙂
 
Hi Patricia

The CGMS's and Guardian RT's should be available to everyone through their diabetes team, it is part of the NICE guidelines. However some teams don't seem to take any notice of NICE guidelines and make it up as they go along, which isn't very helpful or good practice.

My daughter has the Metronic Paradigm 522 sensor pump. It is a normal insulin pump which changed our lives and is also available for everyone in the UK under the NHS if you fit the criteria in NICE and unfortunately most people in the UK do fit the criteria as control is not brilliant (not due to the patient by the way so don't worry on that account). You can get referred to different hospitals for a pump if yours doesn't do them yet. I have helped 4 families over the past couple of months get referred so their children can have a pump. If a consultant tells your PCT that you or your child needs a pump they are not allowed to refuse funding, they have to pay up.

On this particular pump there is a CGMS to go with it. We use a sensor exactly the same and it is available on the NHS. They last for about 6 days and we have full funding. I have many friends with children on the sensor pump and other pumps as well.

Yes you do need to do as many finger tests but the sensor comes into it's own and is fantastic. I couldn't not have my daughter without the sensor anymore. She is fully funded and has a sensor continuously. It has changed our lifes totally.

When she was smaller we had a normal CGMS a couple of times. The first time it picked up she was going hypo over night inbetween the times I got up and tested her so it was a lifesaver for us.

I would enquire. If you want to know more about pumping, just give me a shout. I would like to help everyone all the time re type 1 diabetes and their child, I see bad care out there by teams and want to make it better (by the way I am not saying you have bad care by your team, I am generalising).

Take care 🙂
 
Adrienne, thank you. I'm staggered.

Yes, we have just managed to get our son referred to a clinic which regularly uses pumps, and they are already starting the ball rolling. My son's main and admirable drive is to get the numbers down, so I think it will be a good thing all around. I hope it is soon. The NICE guidelines seem a little immaterial, as everyone mentions them -- but only when they want to throw up a barrier! Those who are keen on pumps seem to just say, yep, fine.

In our area, children's pumps are only *just* being introduced. And we just don't want to wait. We also want the expertise that long-time experience of pumping gives. So we're going elsewhere.

Re CGMs, I'm very interested that this is all a package for you. It seems that with finger pricks, the continuous readings (even if a little off) provide useful and as you say, in some cases, vital, info.

Today my son has just come home very down: a reading of 20 two hours after lunch, and this the day of having upped his levemir again. It feels like an endless battle at the moment; we have yet to get real stability, 8 weeks in. The cap on his ratios need changing, but we're only just getting started with those so it's step by step. Meanwhile I see the signs of a high boy: tired, moody. Sigh. He's becoming disheartened, and wants it to be right.

Thanks for all this, anyway.
 
Hi Patricia

Don't despair, believe me when you are pumping, you and your son will really find out what food does to the levels. When my daughter was on MDI and we were carb counting that was it, we were 'just' carb counting and adjusting insulin accordingly but still getting highs without knowing why.

When you pump you start learning other stuff. For example when you eat pasta, you will generally spike about 4 to 6 hours later!! So you administer the insulin a different way when you have a pump. There are a few different methods of getting the insulin in. All at once, or a bit at a time over different time periods etc etc. A jacket potato with cheese and baked beans is a nightmare and no-one I know has managed to work out how to deal with it. My daughter always is very high for a long time and whatever type of delivery of insulin I give it beats me every time!!!

Rice is another tricky one. It doesn't start working for a little while but spikes a lot later. So it is better to give the insulin after eating so that the rice starts working and then the insulin starts working unless you are high beforehand.

Pizzas - oh dear. They spike about 8 hours later sometimes so if you had a normal pizza for tea and wonder why your son is very high in the middle of the night, the pizza is to blame.

Chinese restaurants - no problem on a pump, they too spike hours and hours later.

Mashed potato however works like a spoonful of sugar!!

It is an eye opener and whilst your son will get his fair share of highs and a few lows it will be so much better. If you think 20 is high now, then a few months down the line you may be thinking 14.0 is high!!! It is not perfect and not brilliant and we still swing sometimes but overall everything is better.

Hope I have confused you.

🙄
 
Well it's really more like relieved me! We are all suspecting just what you say in various ways -- last night's pasta for instance produced a hypo -- not really, of course, but combined with a bath, the insulin completely missed the pasta and he went down quickly... and today, heaven only knows. Somehow the insulin missed his sandwiches or something...

I've noticed that about mashed potato! How funny. He always has better 2 hour after eating readings with mash.

Lordy. I can *really* see the value of pumps. This is like sending off rockets into the dark.

Thanks for *everything*.
 
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