Thinking about getting CGM for my son, and we are looking at Dexcom 7. I know Amanda has a CGM, just wondering if anyone has any opinions on first of all whether they are worth buying and secondly which one is the best. Im hoping for him to get better control and also to avoid major hypos sneaking up!
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question about CGM
- Thread starter CarolK
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shiv
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Carol. Have you asked your team about getting a CGM funded?
There's a few things to think about in terms of 'are they worth it'. Just so you know, I am very pro-CGM, but these are things worth thinking about! Firstly - it's another device to wear, which may or may not bother your son. They are not as reliable as finger prick tests as they often lag behind, as they read interstitial fluid. The best thing about them is supposed to be the 'trends' - ie the ability to tell if your BG is moving up or down or staying steady, rather than always having accurate numbers.
Have you spoken to the Children With Diabetes community? Lots of the members have children on CGM (majority NHS funded, some privately funded) and would be able to give you loads of advice 🙂 http://www.childrenwithdiabetesuk.org - sign up to the emailing list and you'll be in touch with loads of families from across the UK with children with type 1 🙂
There's a few things to think about in terms of 'are they worth it'. Just so you know, I am very pro-CGM, but these are things worth thinking about! Firstly - it's another device to wear, which may or may not bother your son. They are not as reliable as finger prick tests as they often lag behind, as they read interstitial fluid. The best thing about them is supposed to be the 'trends' - ie the ability to tell if your BG is moving up or down or staying steady, rather than always having accurate numbers.
Have you spoken to the Children With Diabetes community? Lots of the members have children on CGM (majority NHS funded, some privately funded) and would be able to give you loads of advice 🙂 http://www.childrenwithdiabetesuk.org - sign up to the emailing list and you'll be in touch with loads of families from across the UK with children with type 1 🙂
Hanmillmum
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi is there any chance you could ask your Team for use of the CGM for a few days, so you can get a good idea if it is going to be something you want to invest in? Not sure of availability of this throughout the country but we can have use now and again but only have once so far.
RSVP
Well-Known Member
Hi Carol
Has your son ever spoken to anyone about his diabetes?
I wonder if he has fully come to terms with all things D ? I know he has been diagnosed 7 years but sometimes as teenagers we nod and do the right thing for a quiet life. Eventually needing to blow and let off steam. This for most isn't a problem but add diabetes into the mix and you know where you end up
Sorry if I sound harsh but I think he needs to sort the other stuff out first.
Have you asked him if he'll wear a cgm if you get it?
Really hope that things start to move in a better way for you all very soon.
Take Care
Sarah x
Ps sorry I suppose I should have added this to your other a&e post. But figured it may help???
Has your son ever spoken to anyone about his diabetes?
I wonder if he has fully come to terms with all things D ? I know he has been diagnosed 7 years but sometimes as teenagers we nod and do the right thing for a quiet life. Eventually needing to blow and let off steam. This for most isn't a problem but add diabetes into the mix and you know where you end up
Sorry if I sound harsh but I think he needs to sort the other stuff out first.
Have you asked him if he'll wear a cgm if you get it?
Really hope that things start to move in a better way for you all very soon.
Take Care
Sarah x
Ps sorry I suppose I should have added this to your other a&e post. But figured it may help???
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thanks again everyone, i dont think we would get funding atall, think we will have to buy it. With regards to him maybe not accepting his diabetes - maybe, he does deal with it in his own way, sorry if I made him sound totally irresponsible in my last post, he isnt, he has his moments like all young people but in the main he is level headed and doesnt give me much trouble. Infact if it wasnt for his diabetes , I wouldnt have a complaint. He doesnt test as much as he should but he does test a couple of times a day, and he said to the doctor his sugars run between 6 and 9 most of the time, so thats not too bad. I think I may get him to try the CGM, I did read somewhere that they can let you have it on a months trial, although you have to buy it, if its not suitable they will refund your money within a certain time limit. His illness affects our whole family, and I think he has also got to take that into account (sorry if that sounds selfish) it wasnt nice for his sister to have to deal with it, and I need some peace of mind! so fingers crossed
AJLang
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Carol
As you know I love my CGM because it has helped me so much with my control - I would not be without it for anything - but I'm not convinced that I would have wanted one when I was younger. I'm not sure how old your son is but I would not have wanted the CGM when I was at an age when you are making friends, developing relationships and gettting to know people very well. The reason for this is that having the sensor attached to you, with its sticking tape, is not exactly great when you're trying to look your best e.g. on the beach, in the swimming pool or anytime that yo are not wearing a top. I'm feel comfortable wearing mine because I'm in a secure long-term relationship but I'm not convinced I would want a CGM if this wasn't the case. Obviously this is only my personal opinion but, having had diabetes for 40 years, I sometimes think that all of the latest devices can lead to diabetes burnout as it makes it even harder than ever to "escape" from the diabetes. It would be brilliant if your son could borrow a CGM for a trial to see how he finds it.
As you know I love my CGM because it has helped me so much with my control - I would not be without it for anything - but I'm not convinced that I would have wanted one when I was younger. I'm not sure how old your son is but I would not have wanted the CGM when I was at an age when you are making friends, developing relationships and gettting to know people very well. The reason for this is that having the sensor attached to you, with its sticking tape, is not exactly great when you're trying to look your best e.g. on the beach, in the swimming pool or anytime that yo are not wearing a top. I'm feel comfortable wearing mine because I'm in a secure long-term relationship but I'm not convinced I would want a CGM if this wasn't the case. Obviously this is only my personal opinion but, having had diabetes for 40 years, I sometimes think that all of the latest devices can lead to diabetes burnout as it makes it even harder than ever to "escape" from the diabetes. It would be brilliant if your son could borrow a CGM for a trial to see how he finds it.
Thanks for that, it is something else to think about, but my son is 23, he has had diabetes for 9 plus years, and I think anything that helps with control and ultimitely (maybe?) lack of complications is a good thing. On the videos I have seen of people using the Dexcom particularly, they have said you can put the transmitter on the thigh, which I think for a man, is great. As you said shiv, kids have CGMs and seem to deal with them. I know , at the end of the day it is going to be his decision, but if I can get him to agree to trail it for a month, we will see! I do appreciate hearing your opinions, it all helps in the decision making.
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
I have read a lot of North American blogs by people young and old, sporty and otherwise, and it appears as though using the CGM is second nature to them - an essential piece of kit. Dexcom does seem to be the most popular type I have come across 🙂
im very happy to say that Ive been in touch with the man at Dexcom, and been through everything with him, got all the forms emailed to me and we could have the CGM by Wednesday, he said.He was very helpful , said he came to Liverpool quite often to go to Alder Hey and would willingly call in and go through everything with us. He also said we could have the moniter on a 2 week trial. If after the 2 week period, we didnt want it or it wasnt suitable for us, they will refund the money minus the cost of a sensor . I am over the moon, especially as said son has agreed to using it. I believe it is very useful when exercising, and has a rapid drop alarm and the high and low settings, which is what I was interested in. I really hope we are not disappointed.
Steff
Little Miss Chatterbox
- Relationship to Diabetes
- Type 2
Thats great news Carol.Good luck
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
That's excellent news Carol! 🙂 Hope it works well for him.
hyper-Suze
Well-Known Member
- Relationship to Diabetes
- Type 1
Ooh, thats interesting, so you have to pay for the meter first and then if can't get on with it to get a refund off them? I wouldn't mind one but that is as I am the same as Amanda and in a secure r'ship that my health now comes before vanity - not always the case though!
As an add-on to RSVP(Sarah)'s post - has your son thought about joining on here? I have found it a fantastic place to learn and accept all things D and that I'm not alone. Being 23, hes at a mature and less rebellious age but still this place is good as he can be as vocal or anonymous as he likes! It is just an easier way to get ideas, views and advice than waiting to speak to a DSN, especially during the night or weekends!
I think its great you are taking such an active role in his D!
thankyou, hes quite a quiet lad, and I really think he handles everything well, and probably doesnt feel the need, at the moment to come on here. maybe in the future, he might (or whenever he settles down , his partner may feel the need!) His best mate is also Type 1, and I think they sort of support each other. I have certainly found reading all the info on here invaluable, and have learnt a lot from everyone, sometimes just by reading through things. Its nice to hear how other people cope. Prob cos he was diaganosed at a young age, I have always taken an interest in things (understatment!!)
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
We've just done this ourselves actually, the two week trial. The man at Advanced THeraputics who does Dexcom in the UK is lovely and very helpful I agree with you.
You have to pay for three sensors for the trial, you get to use two and the third is for them to test the machine once you have returned it. Some people find they can use one sensor for the whole 2 weeks and send the second one back so you get the third refunded.
You have to pay for the whole lot up front which is approx ?1200. You get approx ?1070 ish back. THe sensors are ?62.50 each.
We did it to compare as Jessica already has full time CGM attached to her Medtronic insulin pump.
Great trial and recommended if you can afford it. 🙂
You have to pay for three sensors for the trial, you get to use two and the third is for them to test the machine once you have returned it. Some people find they can use one sensor for the whole 2 weeks and send the second one back so you get the third refunded.
You have to pay for the whole lot up front which is approx ?1200. You get approx ?1070 ish back. THe sensors are ?62.50 each.
We did it to compare as Jessica already has full time CGM attached to her Medtronic insulin pump.
Great trial and recommended if you can afford it. 🙂
How do you find the CGMs in general Adrienne. Are they as good as I "think they are" - I have no experience of them whatsoever, but hope that they can give me the peace of mind I long for , and my son help in getting on with his life, and hopefully controlling his D for the better. How do the alarms work, do they do the trick and alert you to your highs and lows? Particularly the rapid drop one, that would have saved my son having his seizure last friday as Im sure thats what happened, as he actually got up to treat himself , and drank half a bottle of lucozade, but I think his sugars had dropped so rapidly, that he had left it too late.
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
I won't let Jessica go to bed without one in now. They are my back up. They work differently for different people. You have to spend time learning on the job (ie with sensors in and being used) and working out how they work best for you.
We've used them for 4 1/2 years full time. It has been proved that you need to use them full time for the full benefit and one monthly, whilst it will give you an idea of what is happening overnight (so long as the people reading the results know what they are doinging), it doesn't help tighten control and lower the HbA1c.
THey are not always spot on and sometimes extremely frustrating as they can be way out. They are better sited in some areas than others but you won't know which until you try all areas.
I absolutely will argue till the cows come home about why CGMS should be available full time to all (who want it) on the NHS, adult and child alike. They are life saving especially the Medtronic low suspend option but you need a Medtronic VEO for that.
Yes the alerts and alarms could well have alerted your son to his rapidly dropping level.
Lots of friends find the Dexcom extremely accurate so I advise try it out. I'm happy to read the results for you if you are not sure. I can look at the graph once you've downloaded it and talk you through things from my experience.
We've used them for 4 1/2 years full time. It has been proved that you need to use them full time for the full benefit and one monthly, whilst it will give you an idea of what is happening overnight (so long as the people reading the results know what they are doinging), it doesn't help tighten control and lower the HbA1c.
THey are not always spot on and sometimes extremely frustrating as they can be way out. They are better sited in some areas than others but you won't know which until you try all areas.
I absolutely will argue till the cows come home about why CGMS should be available full time to all (who want it) on the NHS, adult and child alike. They are life saving especially the Medtronic low suspend option but you need a Medtronic VEO for that.
Yes the alerts and alarms could well have alerted your son to his rapidly dropping level.
Lots of friends find the Dexcom extremely accurate so I advise try it out. I'm happy to read the results for you if you are not sure. I can look at the graph once you've downloaded it and talk you through things from my experience.
- Relationship to Diabetes
- Type 1
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- He/Him
I couldn't agree more Adrienne. Why NICE have still not approved CGMs as a 'valid' treatment option after all these years is completely beyond me.
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