Well - day 2 for the CGM which I have just got for my son. Where do I start, Im disappointed thats he is not overly impressed with things. Everything ok yesterday , to a point, easy enough to put on and callibrate. Doesnt seem to be very accurate, but then I remembered Amanda saying in the first 12 hours they werent. Then 6am this morning woken up with a rapid drop alarm, saying his sugars were 4, he tested and they were 10.5! He wasnt very happy. This afternoon he went to the gym, and said while he was exercising, the moniter showed they had risen to 10. He injected to correct (I know he shouldnt have, they say you should always use fingerstick readings) and when he tested on his meter , his sugars were actually 6. He is saying "what is the point" and Im struggling to justify it. I so want this to work.
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thumbs down for the CGM
- Thread starter CarolK
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Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Hi Carol, from what I have gathered it can take time and patience to get used to things so they may not give stunning, faultless performance straightaway. The problem when you have only a short trial is that you have little time to establish how best to make it work for you, probably much like a pump - some people take to pumps very quickly, others may take months to fathom them out. Not just how it works, but the things to avoid that don;t work well for you, or the best place to site the sensors. I get the impression that your son is rejecting it on the basis of just a couple of readings after expecting it to be 100% reliable and accurate out of the box. Personally, I think I would need to try one for at least a month in order to gather enough data to convince me one way or the other. I hope he is willing to give it a proper try. 🙂
AJLang
Well-Known Member
- Relationship to Diabetes
- Type 1
hi Carol I don't know where your son has placed the sensor. I put mine on my tummy and that is the only place recommended by Dexcom. It does take a good 12 hours before it settles down. I also calibrate mine four times a day for the first two days for each new sensor and each time I enter the meter reading twice into the CGM if there is any difference between the CGM and the meter. I have been thrilled with how close my CGM is to the meter reading but there are times when there is a difference eg 8 on meter and 10 on the CGM. If your son did not test when he did the correction how did he know that the meter was 6 when the CGM read 10 also taking into account that exercise can rapidly affect your blood glucose and there is a 15 minute delay between the CGM reading and actual blood glucose?
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi Carol
Just seen your email and pm so thought I would reply on here. Firstly you will not ever be a nuisance to me. I love helping anyone I can with all things diabetes that I know about. If I don't know then I generally know someone who will and I'll be honest if I don't. So ask anything and use my email address as and when you need to.
Ok, secondly do not despair yet. If I remember rightly you have the Dexcom. Are you trialling it for a 2 week period? Have you ever used sensors before, I don't think you have?
It is extremely hard to work out how sensors will work for each individual. Some people are very lucky and they put it on, set it up and bingo it is lovely and perfect. Others are not so lucky. Dexcom state they only have a 5 minute time lag difference (not 15 minutes as Medtronic have). I can only presume they have very different alogarhythms (sp?) or programmes or something etc but 5 minutes it is.
I know many people using the Dexcom. For a few people it never worked that well but for most they love it. Unfortunately I'm in the former. However we had three sensors to compare, the two from medtronic and the Dexcom one.
Everyone says that the Dexcom gets better with age so by day 3 or 4 you should be just fine.
You will learn how to use the arrows. So for example if your levels have dropped and you are now say 4.0 and the sensor says 8 with an arrow or two pointing down it is doing ok. The sensors take a bit of time to catch up but you can use the arrows to know you have dropped fast and so test your finger, the same with going up.
Never give insulin on a sensor reading until you are 100% aufait with how they work for you.
Some people use the sensors purely as a tweaking machine. So they download the data weekly and use the readings to see where the peaks and troughs are and then tweak basal rates on their pumps or ratios for food. Even doing just this makes it worth having a sensor as people's HbA1c's decrease from doing this. Even if the numbers are not been perfect they will have be tracking to a degree so you use the graphs and not the numbers.
If you are doing a 2 week trial and you have never used sensors before this is going to be hard. Try not to get frustrated. Turn some of the alarms off, we did. Turn the fall rate and rise rate or whatever they are called off. You still have the arrows but not the alarms which can be very annoying.
Swimming, no problem. You can swim with them on just fine. Jessica has swum swimming lessons and holidays in pools and in the sea with her Medtronic sensors and others have done the same with their Dexcom and all are ok.
You do get the odd sensor where you just think it is a right pain in the butt and it is always out and never works and what a waste of time. If you have a two week trial and you have two of the Dexcom sensors then you can do what I did. If you find that on say day 4 all the numbers are still that far out, put the next sensor in maybe and you may get much more than 7 days out of it or you could wait until day 6 or 7 and see if it gets better.
I hope that has helped a bit. Please ask anything else that I may have missed and can help with.
There is no way you or your son should throw in the towel. Once you know how this will work for you then neither of you will want to give it back but you have to work it out beforehand. It may be that the Dexcom is not for you but you may want to try the Navigator or the Medtronic ones. One of them will suit your son. I hope that he goes with this trial, it really is amazing once it is up and running and you understand its limitations and uses.
🙂
Just seen your email and pm so thought I would reply on here. Firstly you will not ever be a nuisance to me. I love helping anyone I can with all things diabetes that I know about. If I don't know then I generally know someone who will and I'll be honest if I don't. So ask anything and use my email address as and when you need to.
Ok, secondly do not despair yet. If I remember rightly you have the Dexcom. Are you trialling it for a 2 week period? Have you ever used sensors before, I don't think you have?
It is extremely hard to work out how sensors will work for each individual. Some people are very lucky and they put it on, set it up and bingo it is lovely and perfect. Others are not so lucky. Dexcom state they only have a 5 minute time lag difference (not 15 minutes as Medtronic have). I can only presume they have very different alogarhythms (sp?) or programmes or something etc but 5 minutes it is.
I know many people using the Dexcom. For a few people it never worked that well but for most they love it. Unfortunately I'm in the former. However we had three sensors to compare, the two from medtronic and the Dexcom one.
Everyone says that the Dexcom gets better with age so by day 3 or 4 you should be just fine.
You will learn how to use the arrows. So for example if your levels have dropped and you are now say 4.0 and the sensor says 8 with an arrow or two pointing down it is doing ok. The sensors take a bit of time to catch up but you can use the arrows to know you have dropped fast and so test your finger, the same with going up.
Never give insulin on a sensor reading until you are 100% aufait with how they work for you.
Some people use the sensors purely as a tweaking machine. So they download the data weekly and use the readings to see where the peaks and troughs are and then tweak basal rates on their pumps or ratios for food. Even doing just this makes it worth having a sensor as people's HbA1c's decrease from doing this. Even if the numbers are not been perfect they will have be tracking to a degree so you use the graphs and not the numbers.
If you are doing a 2 week trial and you have never used sensors before this is going to be hard. Try not to get frustrated. Turn some of the alarms off, we did. Turn the fall rate and rise rate or whatever they are called off. You still have the arrows but not the alarms which can be very annoying.
Swimming, no problem. You can swim with them on just fine. Jessica has swum swimming lessons and holidays in pools and in the sea with her Medtronic sensors and others have done the same with their Dexcom and all are ok.
You do get the odd sensor where you just think it is a right pain in the butt and it is always out and never works and what a waste of time. If you have a two week trial and you have two of the Dexcom sensors then you can do what I did. If you find that on say day 4 all the numbers are still that far out, put the next sensor in maybe and you may get much more than 7 days out of it or you could wait until day 6 or 7 and see if it gets better.
I hope that has helped a bit. Please ask anything else that I may have missed and can help with.
There is no way you or your son should throw in the towel. Once you know how this will work for you then neither of you will want to give it back but you have to work it out beforehand. It may be that the Dexcom is not for you but you may want to try the Navigator or the Medtronic ones. One of them will suit your son. I hope that he goes with this trial, it really is amazing once it is up and running and you understand its limitations and uses.
🙂
I'd agree with what the others have said - you need to give it time. It took me over a month of continuous use to really get to know my Medtronic CGM - to know when I could trust it, when it would be lagging behind etc. I frequently bolus based on what it tells me now, but wouldn't have done in the early days. And after 4 years there are still days when I could happily throw it out of the window.
Bear in mind also, your son might find CGM quite intrusive. Seeing your blood sugars all the time is incredibly useful, but also means that you have so much diabetes data at your fingertips it can be overwhelming. That takes some getting used to too.
Like Adrienne I've also turned the fall and rise alarms off on my CGM. I felt I was just getting too many alerts and the majority of time, I wasn't going to do anything with what it was telling me. I just use the high and low alerts now and that works fine.
Stick with it, it is frustrating and a tough learning curve but personally I found it an invaluable diabetes tool once I'd got the hang of it.
Bear in mind also, your son might find CGM quite intrusive. Seeing your blood sugars all the time is incredibly useful, but also means that you have so much diabetes data at your fingertips it can be overwhelming. That takes some getting used to too.
Like Adrienne I've also turned the fall and rise alarms off on my CGM. I felt I was just getting too many alerts and the majority of time, I wasn't going to do anything with what it was telling me. I just use the high and low alerts now and that works fine.
Stick with it, it is frustrating and a tough learning curve but personally I found it an invaluable diabetes tool once I'd got the hang of it.
Hi everyone, sorry but been busy over the bank holiday and not had chance to reply. Took Adriennes advice and tool out the sensor, and put new one on his abdomen, as we werent getting good results. Example - this morning, alarm went off at 3.9, when tested actually 9.3! So we started this afternoon with new sensor on new site. We will wait and see what happens. I understand that it may be a lengthy process, but I dont think my son will have the same patience somehow. The dilemma Im going to have is that if we are not convinced at the end of 2 weeks, the decision will have to be made to keep it or send it back. If we keep it longer than the 2 weeks, and then decide its not for him, we do not get any of the money back. Whilst I dont mind spending the money if its going to be useful, I really dont want to spend that kind of money to leave lying in a drawer after a few weeks. Will let you know how the next few days go>
Thanks for all your replies,
Thanks for all your replies,
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
Hi Carol.
Whilst I appreciate your reasons for wanting him to use the CGM for his own health and because you have to keep picking up the pieces, would it be better to try and address his lack of acceptance of diabetes ?
I realise I may be speaking completely out of turn and don't expect you to agree with me, but I feel that the problem is that he doesn't want to control his BGs because he would then have to be responsible for the results. At 22, he may just have agreed to the CGM to get everyone off his back but doesn't actually have any interest in what it tells him. It may even be that he feels it's an intrusion in his life and could turn him further away from acceptance.
I'm speaking from a point of view of a T1 who was diagnosed at 13, went along with all the things I was meant to but would have loved to have told my parents, the doctors, etc that I just don't want to and they can clear off and leave me alone !
Thankfully I didn't and I'm still here today but I can almost sympathise with him (although I don't agree with him drinking himself silly and leaving all of you to mop up).
Rob
Whilst I appreciate your reasons for wanting him to use the CGM for his own health and because you have to keep picking up the pieces, would it be better to try and address his lack of acceptance of diabetes ?
I realise I may be speaking completely out of turn and don't expect you to agree with me, but I feel that the problem is that he doesn't want to control his BGs because he would then have to be responsible for the results. At 22, he may just have agreed to the CGM to get everyone off his back but doesn't actually have any interest in what it tells him. It may even be that he feels it's an intrusion in his life and could turn him further away from acceptance.
I'm speaking from a point of view of a T1 who was diagnosed at 13, went along with all the things I was meant to but would have loved to have told my parents, the doctors, etc that I just don't want to and they can clear off and leave me alone !
Thankfully I didn't and I'm still here today but I can almost sympathise with him (although I don't agree with him drinking himself silly and leaving all of you to mop up).
Rob
Hi Carol i to have had a try of a sencor this weekend and was realy REALY looking forward to relaxing with help ! Dont know what happend but was behaving on high bgs but we had set sencor on low bgs at 3.5. And guess what happend when i was below 3 twice ? (thought i could calm down) God knows what the readings are going to be ! 45 years i need a holiday !
Hi rob, first of all I dont mind anyone giving their opinion, but at the risk of appearing defensive over him, I think I may have given everyone the wrong idea of my son. I think when he was first diagnosed, he may well have had problems in accepting diabetes and everything that came with it. We went through a lot of emotional struggles (as Im sure everyone does) and when he was about 17 or 18 quite a few times where alcohol was involved and he ended up in A & E. However since then, he has grown up a lot, and he does accept his diabetes and generally has quite good control. He goes to the gym on a regular basis, and looks after himself. What happened last week, maybe he just had one of those times, when he was fed up not being able to do what other young people were doing? Who knows, everyone at some stage must get fed up with having to watch everything they eat or drink, and I think it was just that. You are right in the sense that it is probably me who wants the CGM more than him, and obviously if he doesnt really want it, its never going to work. The next few days will tell, he is probably doing it for me. Such a hard illness isnt it!
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
Hi Carol,
I felt compelled to say it, although I could tell that you were on the ball enough to realise it. Soemtimes, things need spelling out on a forum where it could be inferred in normal conversation.
It is a hard illness and the psychology involved on a day to day basis is complicated stuff. It's easy for me, at 46, to sit and say how responsible I think he should be but probably forget how I was at that age. I didn't go out drinking but I did end up in A&E a couple of times due to not responding quick enough to hypo symptoms (we didn't have meters then so very much down to 'feelings') or exercising too much without eating enough, etc.
I hope he goes along with it and thanks you for it in a few years when his HbA1cs are spot on every 6 months. 🙂
Rob
I felt compelled to say it, although I could tell that you were on the ball enough to realise it. Soemtimes, things need spelling out on a forum where it could be inferred in normal conversation.
It is a hard illness and the psychology involved on a day to day basis is complicated stuff. It's easy for me, at 46, to sit and say how responsible I think he should be but probably forget how I was at that age. I didn't go out drinking but I did end up in A&E a couple of times due to not responding quick enough to hypo symptoms (we didn't have meters then so very much down to 'feelings') or exercising too much without eating enough, etc.
I hope he goes along with it and thanks you for it in a few years when his HbA1cs are spot on every 6 months. 🙂
Rob
Thanks, you dont know how helpful it is to speak to people who know what its like to deal with all of this. You are so right, its easy when you get to our age, to say what you should and shouldnt be doing, but when I think back, was I like that at 22 ? maybe not. Its nice for me though to hear diabetics who have been diagnosed for a long time, tell me how they all felt at that age and how they have coped with growing up with diabetes. It does give me hope that he will be alright.
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Carol,
As another oldie, here's my 2 pence worth.
I started my diabetes life at the age of 4 1/2 so obviously survived teens etc.
From a person with diabetes point of view. I'm going to say please please don't keep trying to push your son into accepting and or doing things that you want him to do.
The end result will be him resenting you and this will make his acceptence of his conditon even harder. I know you think he accepts his diabetes, but us with it know he hasn't. Why? Because we have been there and worn the Tshirt.
He needs to learn to accept things and make his own mistakes at 22 he is old enough to know what he wants and how he feels.
My advice for what it's worth is to send back the CGM until he decides he want's to use it and not before. Unless he is going to use the data it provides or wants to be reminded 24/7 of his blood sugar then it's not for him at the moment.
PS, your son's behaviour is normal as is yours for being a very caring Mum.
As another oldie, here's my 2 pence worth.
I started my diabetes life at the age of 4 1/2 so obviously survived teens etc.
From a person with diabetes point of view. I'm going to say please please don't keep trying to push your son into accepting and or doing things that you want him to do.
The end result will be him resenting you and this will make his acceptence of his conditon even harder. I know you think he accepts his diabetes, but us with it know he hasn't. Why? Because we have been there and worn the Tshirt.
He needs to learn to accept things and make his own mistakes at 22 he is old enough to know what he wants and how he feels.
My advice for what it's worth is to send back the CGM until he decides he want's to use it and not before. Unless he is going to use the data it provides or wants to be reminded 24/7 of his blood sugar then it's not for him at the moment.
PS, your son's behaviour is normal as is yours for being a very caring Mum.
AJLang
Well-Known Member
- Relationship to Diabetes
- Type 1
Further to what Sue said - I love my mum to bits but she is categorically not allowed to ask me how the diabetes is or what my BG is, and hasn't been allowed since my early teens - I have to admit that I do snap at her if she does ask..........but, bless her, she is expected to provide lots of sympathy if I tell her that I'm having problems. I wouldn't like being the mother of a diabetic - it's much too complicated knowing what you are and aren't allowed to say🙂
i do understand what you are all saying. I have got 3 kids, and 4 grandchildren , so not new to this game! I wont push him into having this if he really doesnt want it, we only ever agreed to the 2 week trial and the decision will then be made by him as to whether he keeps it or not. I know from experience that you cant make someone do something if their hearts not in it. On a good note, since he put the new sensor in (on the abdomen) numbers have been brilliantly accurate - last night 6.7 on dexcom and 7.1 on meter, and this morning 6.9 on dexcom and 6 on meter, so it looks like the change of site has worked. We will see what the week brings. Thanks again everyone, your help is much appreciated.
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