CGM/sensor questions!

[Patricia]

We are starting to use sensors with my 14 yr old son - but so far are finding them SO frustrating! In the last week it has not registered a single hypo, and except very rarely, has not been closer than 2-4mmols, and fairly often as far as 5mmols! - from the fingerprick measurement.

For the physical intrusion, they are not yet feeling worthwhile. ANY tips for trying to achieve greater accuracy very gratefully received....

 

[Sugarbum]

Have you started them yourself or with some assistance type thing?

I discussed buying a pack just to see what they are like with my DSN and she said to me its very complicated so I must make an appointment with her to start me off on them if I did buy a box (did she imply I was thick?!).

What made you decide to make the change Patricia?

 

[mikeinspain]

Hi Patricia

I don't use a pump/cgms yet but I have been speaking with some people at Medtronic about a few things and of course their products.

One of the things that came to my attention was "how" the cgm measured the glucose levels. You may or may not know that the sensor measures what is called "interstitial fluid" and one of the technicalities with this is there is a 20 min lag between the cgm reading and a finger prick reading.

So ultimately it is a prediction tool and it is great for looking at trends. The advantage you have with the cgm is that it will tell you if you are dropping to 3/4/5 to rising up to 10/11/12.

I understand the frustration but it's purpose is not be a meter replacement. I know that they come with alarms so maybe worth looking at adjusting these settings so that you can be alerted when the is at 5/6 for example, therefore alerting him/you and giving yourself more time to react.

http://en.wikipedia.org/wiki/Interstitial_fluid
http://www.medtronic-diabetes.co.uk/help-and-support/guardian-real-time.html

Hope that helps.

 

[bev]

Hi Patricia,
We have been using sensors for months now and there seem to be 'good' ones and 'bad' ones.
When you have inserted the sensor - dont put the transmitter on straightaway. Leave it for a good 2 hours so the threads get 'wet' - this makes for a good start. Dont callibrate at odd times like when he has just eaten or at the 2 hour check. It is much better to start callibrations first thing in the morning, this gives the sensor a true basis to work on. Then callibrate throughout the day - but only when it is a very stable and safe bet that things wont change very quickly just after callibration. Try callibrating at 3am on the odd occasion and this will help to stabilise the readings as things are unlikely to change from them until waking up as there isnt any food or exercise lurking to suddenly change things.

You will find through trial and error where is the 'best' place to put the sensor as it does make a difference to the readings. We found the most accurate place was on the thigh - but he prefers to put them out of site on his bottom!

You wont like sensors for a good few weeks yet until you are used to how to interpret the readings. It takes a while to understand the 'ins' and 'outs' of them but this will come and you will find your own way of getting things accurate that suits E's body.

Some sensors are very accurate - like 4.5 on the sensor and 4.7 'true' reading - but others are miles out - and this is because of the above reasons or you just have a 'bad' sensor.

We find the best use of them is to spot trends and it enables us to be pro-active rather than re-active so helping to avoid those low hypo's and high hyper's before they reach that stage. They wont eliminate high or low levels - but they will give you a warning that things are about to change and if there are 2 arrows pointing up or down - this is likely to happen within minutes so gives you warnings.

Dont worry if your not getting accurate readings for now - just give it time and as with anything diabetes related - everyone is an individual and what works for Alex may not work for E - so keep on trying and you will get there in the end.🙂Bev

p.s. E needs to drink a big glass of water as soon as you insert the sensor as this helps the fluid around the sensor to 'wet' it.

 

[Patricia]

Bev, thank you SO much. Sorry not to see this a few days ago -- relatives in town. These look hopeful suggestions.

We haven't put in another one for the moment because our last experience was kind of ridiculous: one example was a nice even 6.5 through the night... WRONG! He was actually 2.2mmols, and the graph had not budged or trended down all night. Argh.

For us, site rotation is also an issue. I suspect thigh is the way to go, but he has NO fat on his body and the needles are long and big. Slightly grim.

Mis-firing like this, the CGM did not even INDICATE one single hypo, of which there were plenty. I can see that it's trial and error, and really do long for it to be useful for us. But it was a bad start. We need hard cold facts in order to convince him to do it again. He doesn't like the feeling of being 'experimented upon' with such an intrusive piece of kit.

But your thoughts and experience go a long way toward helping us get to a point where we may be able to focus again, many thanks.

Lou, we decided to go down this route if only on an occasional basis because night readings have been hard for us to track. He's woken high over and over, but then goes through days of being low...Bit weird. We wanted to see if there were small adjustments we could do at unexpected times to help keep him stable. Also, he has become a bit insistent on being checked at night. And we are tired. We would like to be able to set alarms on the sensor and find them a bit dependable. Not all the time of course, and not when we judge there to be 'issues' that need looking at in the night -- but some of the time. We're not far off a time when he will need more independence, and begin to work his own nighttimes, feeling comfortable. He needs to feel as safe as technology can help him to feel.

I keep talking about intrusive kit -- we have found them to be so. However, there is a new transmitter from Medtronic, released in June -- anyone seen it? Think it is smaller and lighter. Which would be WONDERFUL. When will we get it is the question...

xxoo

 

[Jacqui]

Help with sensors gladly offered

Hi Patricia
I think you may have spoken to or met my husband, Olly Double at Kent?
I am Jacqui Double and we have two boys using full time sensors with their medtronic 722s. Tom is 11 (diagnosed at 18 months) and Joe is 13 (diagnosed at 8 years). For Thomas the sensor has opened up a seed of confidence which was lost when he was diagnosed as a baby, and has waited for a pump AND SENSOR to grow again. For my eldest son the hormones from growth and puberty are being kept tightly controlled due to the data the sensor provides and allows me to proactively use. He independently reacts to the sensor at school and feels liberated to have ti there to guide him.
I would happily chat to you about using the sensors. It is, I think a lot of us sensor users agree, a black art; their are many tips and strange bits of advice which are very useful but have not yet been written down as prolonged sensor use has not been with us for long enough for the book to be written.
There are some good sites in the US to help a bit with sensors but I have found none of them is better than just talking to those who use them and trying what they have tried and tested before.
If you would like a chat let me know if you no longer have Olly's contact details. You would be welcome to come and meet my two boys as well, though I am not sure you are actually living here? Sorry, I have begun to doubt my own memory. This will read as very silly if you have never met my husband.
So strike all that. If I can help you I would be pleased to do so.

 

[Patricia]

Jaqui thank you. Yes Olly and I did a research seminar together in March, and at the time we thought: really must get together!

I was aware you are using sensors with great success. I do belong to the CWD group but find it overwhelming to be honest....

We are so lucky to be funded for sensors that it would be a shame not to feel like we have proper knowledge.

Very interesting to hear the 'lack of info' take - we have felt this, certainly. We KNOW there must be a better way through, but so little documentation exists...

E would welcome making real use of the sensors. What we are risking now however is putting him off because they aren't yet accurate for us.

My sense now is that we need to go on holiday and return refreshed with new practices in hand. We return 8 august. On top of everything, i have relatives in torn until 20 July! So forget anything new.

I'm heartened though. His Hba1c is quite good for age and stage. But there is plenty of room to finesse and learn. It would be great to do this via sensors.

Could you PM me your phone number (olly gave it to me, but lord knows where I put it!)? I can then phone for a chat before we go away....