Hi thanks for letting me join. I am the parent of a 24 yo type 1, diagnosed aged 4. I am constantly aiming to stop interfering in his care, but not easy to let go 🙂. I just joined for advice and support, even after all the time. 🙂
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- Thread starter ChrissyL
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Leadinglights
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Welcome to the forum, there are a number of people who are parents of young or adult children who hopefully will be along.
If you say what insulin he is taking that will help and any information about how he manages his condition will be enable people to make suggestions.
This may be helpful as a guide on how to approach situations with your son.
Thanks. He's on Novorapid, been pumping for 12 yrs on accuchek combo (which he needed to change 12 months ago, but that's another story and I will post about that another time). He is very good about looking after himself, but could be better. My question at the moment and I don't know if I am supposed to start a thread somewhere else, but I just want to ask if every other type 1 has glucagon on there prescription list, icon? It disappeared of his prescription list after he transferred back from uni and it just seems like climbing a mountain to get it put back on.
Inka
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Welcome @ChrissyL 🙂 Glucagon was taken off my prescription some years ago (I don’t remember when). As it turned out, I don’t tolerate it well anyway (lots of vomiting) so I’ve never asked to have it put back on. They also took off HypoStop but that’s so gross, I didn’t ask for it back!
Does your son have a CGM? Does he live with you or alone? If you’d like the glucagon back on, have you tried a written request? Does your son have a lot of hypos?
Does your son have a CGM? Does he live with you or alone? If you’d like the glucagon back on, have you tried a written request? Does your son have a lot of hypos?
rebrascora
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I have never been prescribed Glucagon and not sure I would want it and never needed it. The kit I believe is designed to be used by a trained person rather than the patient so it would be pointless for me as I live on my own. My guess is that, now we have CGM, Glucagon should be less necessary as the alarms on CGM should warn us long before we get to that level.
I guess it may feel to you, and possibly him, that a safety net has been taken away but there are lots of other safety nets now in place through the technology we have, so that particular one is perhaps no longer necessary?
Have you needed Glucagon in the last few years. If so, did you identify why his levels dropped so low and so fast that it was needed and have you/he changed anything to reduce the risk of that happening again? Maybe raised his low alarm or checked his basal profile with a basal test or perhaps discussed HCL (Hybrid Closed Loop) with his consultant if he is using a pump. I would not want my diabetes management to be lapsing to the point that I needed Glucagon and with modern technology I would have thought that it shouldn't, so I am wondering if the pump issues you are having are somehow tied into this issue? Has your son had a DAFNE course or similar? Just wondering if he needs some further intensive education to help him manage his diabetes better and understand all the issues which affect BG levels.
I guess it may feel to you, and possibly him, that a safety net has been taken away but there are lots of other safety nets now in place through the technology we have, so that particular one is perhaps no longer necessary?
Have you needed Glucagon in the last few years. If so, did you identify why his levels dropped so low and so fast that it was needed and have you/he changed anything to reduce the risk of that happening again? Maybe raised his low alarm or checked his basal profile with a basal test or perhaps discussed HCL (Hybrid Closed Loop) with his consultant if he is using a pump. I would not want my diabetes management to be lapsing to the point that I needed Glucagon and with modern technology I would have thought that it shouldn't, so I am wondering if the pump issues you are having are somehow tied into this issue? Has your son had a DAFNE course or similar? Just wondering if he needs some further intensive education to help him manage his diabetes better and understand all the issues which affect BG levels.
rebrascora
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Oh.... and please excuse my lack of manners.... Welcome to the forum! It is a goldmine of practical knowledge, experience and support. I hope you will find it as helpful as I do.
It must be incredibly difficult to step back and hand over responsibility when you have managed their diabetes from being a young child and indeed we have another parent on the forum who is experiencing similar difficulties in worrying and being tempted to "help" when it is no longer their responsibility for a grown son. You never stop being a mother of course!
It must be incredibly difficult to step back and hand over responsibility when you have managed their diabetes from being a young child and indeed we have another parent on the forum who is experiencing similar difficulties in worrying and being tempted to "help" when it is no longer their responsibility for a grown son. You never stop being a mother of course!
Lily123
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Welcome to the forum
I’ve always had Glucagon prescribed. It’s better to have it and not need it than need it and not have it.
If the GP is being awkward about putting it back on,it’s probably the system automatically removed it rather than they have
I’ve always had Glucagon prescribed. It’s better to have it and not need it than need it and not have it.
If the GP is being awkward about putting it back on,it’s probably the system automatically removed it rather than they have
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Welcome to the forum @ChrissyL
I’ve had glucagon off and on over the years, but thankfully have never needed to use it. It might sound odd, but I’m not entirely sure whether I’ve got a ‘just about still in date’ one in the fridge, or whether it ran out last summer - I’d have to go and check!
It’s one of the tricky things about needing to replace things only very occasionally isn’t it. Especially if his surgery is anything like mine and ‘cleans up’ your repeat list if you don’t re-order stuff regularly. My backup Lantus has disappeared again - along with my glucagon. I think I remember seeing that I could request one-off prescription items via the NHS app, so may well give that a try
I’ve had glucagon off and on over the years, but thankfully have never needed to use it. It might sound odd, but I’m not entirely sure whether I’ve got a ‘just about still in date’ one in the fridge, or whether it ran out last summer - I’d have to go and check!
It’s one of the tricky things about needing to replace things only very occasionally isn’t it. Especially if his surgery is anything like mine and ‘cleans up’ your repeat list if you don’t re-order stuff regularly. My backup Lantus has disappeared again - along with my glucagon. I think I remember seeing that I could request one-off prescription items via the NHS app, so may well give that a try
trophywench
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Well - I used to have occasional 'bad' hypos at home when still on MDI that needed my husband to stab me in the bum, rather than him dialling 999 but like @Inka, as it brought my blood glucose back up and I regained awareness - projectile vomiting. That truly was utterly revolting!! and I wouldn't wish it on anyone.
No way is it really much use at all to a normal adult leading a normal life - especially these days with CGM.
Combo pumps don't 'die' very soon anyway so as long as it and the accompanying BG meter/remote control still work OK, there is no urgency to replace PDQ. The pump itself routinely works for 5 years at least.
No way is it really much use at all to a normal adult leading a normal life - especially these days with CGM.
Combo pumps don't 'die' very soon anyway so as long as it and the accompanying BG meter/remote control still work OK, there is no urgency to replace PDQ. The pump itself routinely works for 5 years at least.
@Inka No cgm yet. Uses libre but always coming off due to 'sweating at the gym'. He's still living at home, he's had a fair few minor hypos, luckily he is very hypo aware and always carries glucose.
@rebrascora we were always told to have some glucagon available and there are instructions on how to use it. We rarely take it out of the house, but it would have been good to have it a year ago when he had a sudden hypo and seizure. More than likely brought on by lots of walking at the time. A friend was once told by a nurse that she should have used glucagon for her daughter when she had a hypo and just couldn't get her bs back up no matter what they tried, she ended up having to be treated in hospital, on a drip.
@Lily123 yes I do feel that it's better to have it, and we would use it if necessary, we have used glucogel before on one occasion when dextrose just didn't seem to work. I think you may be correct about the omission being an admin thing. It's just too much like hard work, contacting the surgery these days, it's quicker to drive down and see them face to face, than hang on the telephone waiting for them to answer.
@everydayupsanddowns when his records were transferred from his university town to a surgery near home, his whole prescription list was missing. It took 2 months to get it put back on.
He's now got a telephone appointment after Christmas to review his prescription list so fingers crossed it will be a simple request to ask them to put it back on.
Thank you everyone for your replies, much appreciated.
@rebrascora we were always told to have some glucagon available and there are instructions on how to use it. We rarely take it out of the house, but it would have been good to have it a year ago when he had a sudden hypo and seizure. More than likely brought on by lots of walking at the time. A friend was once told by a nurse that she should have used glucagon for her daughter when she had a hypo and just couldn't get her bs back up no matter what they tried, she ended up having to be treated in hospital, on a drip.
@Lily123 yes I do feel that it's better to have it, and we would use it if necessary, we have used glucogel before on one occasion when dextrose just didn't seem to work. I think you may be correct about the omission being an admin thing. It's just too much like hard work, contacting the surgery these days, it's quicker to drive down and see them face to face, than hang on the telephone waiting for them to answer.
@everydayupsanddowns when his records were transferred from his university town to a surgery near home, his whole prescription list was missing. It took 2 months to get it put back on.
He's now got a telephone appointment after Christmas to review his prescription list so fingers crossed it will be a simple request to ask them to put it back on.
Thank you everyone for your replies, much appreciated.
SB2015
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welcome to the forum @ChrissyL .
I think the new glucagon pens are more straight forward and don’t need the premixing that my OH was trained to do on DAFNE course. The new ones are premixed and just jab.
I prefer to have one available but have not needed it as yet. It falls off my prescription as I don’t order it regularly. I just ask again when the old one is out of date (or more likely after that date and I am reminded by a similar message on here, so thanks for the prompt @ChrissyL , it made me go and check the date).
I think the new glucagon pens are more straight forward and don’t need the premixing that my OH was trained to do on DAFNE course. The new ones are premixed and just jab.
I prefer to have one available but have not needed it as yet. It falls off my prescription as I don’t order it regularly. I just ask again when the old one is out of date (or more likely after that date and I am reminded by a similar message on here, so thanks for the prompt @ChrissyL , it made me go and check the date).
Inka
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@ChrissyL Sorry to hear about his hypo seizure. Those are absolutely horrible. I hope you manage to get the glucagon put back on.
He might have already done this but setting the Libre Low alarm for 5.6 gives a better hypo buffer. For the sweating/Libre problem, he might want to look at an overpatch. There are various ones you can get, but these have a nice range of designs:
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He might have already done this but setting the Libre Low alarm for 5.6 gives a better hypo buffer. For the sweating/Libre problem, he might want to look at an overpatch. There are various ones you can get, but these have a nice range of designs:
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Bruce Stephens
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Keeping the Libre on is just a mechanical problem. If the glue isn't quite sufficient, there are sticky things that can be added (I use Tegaderm sometimes (6x7cm is about the right size)), and there are also more substantial straps (which are apparently horse proof).
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