obstinate Type1 son
- Thread starter 262trudles
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Robinredbreast
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Hi, so sorry to hear about your son.
http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/247/files/pdf/jdn10-9-351-8.pdf
http://www.diabetes.co.uk/forum/threads/how-to-cope-with-type-1-diabetes.111366/
These links are helpful, take care.
http://www.thejournalofdiabetesnursing.co.uk/media/content/_master/247/files/pdf/jdn10-9-351-8.pdf
http://www.diabetes.co.uk/forum/threads/how-to-cope-with-type-1-diabetes.111366/
These links are helpful, take care.
If your son wants to chat quite happy to PM with him. No judgement or fixes but if he just needs to offload. I've pretty much been there done that and collected most o
donnellysdogs
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Tresiba - your son would deginitely need less like @robert72 said. I amon tresiba now (I had to come off pump due to cannula failures each time of changing over).
I also know of others that have come off pumps. They are not for everyone, and perhaps your son did not have a pump that suited him... nothing wrong about that. However, it is soundin like your son may need some advice / help around managing diabetes and his thoughts around it all.. ie getting in way of fitting in with his friends/hobbies etc..some hosputals have a psychologist attached to the diabetes unit to help patients that are struggling getting diabetes management fitting in with their life. Thats what it is effectively boils down to.. it isn't nice having to carry injections and fest kits everywhere.. especially a chap.. women can put in handbag!! Where do men put their stuff? If I went to nightclubs etc or a pub and fancied anything to eat etc.. I had stuff in handbag, where do teenage boys put theirs when they want to go out?? Straight question.. I haven't got a clue?!! The world today is all about fitting in, nobody wants to be different. Crikey, to be honest it would annoy me when everybody else jyst dived in to their food and I had forgotten to test/inject ahead or didn't know what size food plate etc would be coming out if in a restaurant.... its tough...
Yea, it appears that he is obstinate but I don't actually think he is. I think he's trying to do his best at the moment. He may have thought that the pump was so hyped up at being the best tjing to help him-but he couldn't get his head wrapped around doing everything.....
Seriously I think the lad is struggling, not obstinate. I think it would be good to sit him down at a table (not on a comfy chair or settee or bed) and sit opposite him and really have a good listen to what he is feeling... rather than what he is or isn't doing.....
There may be techniques that could be used. Ie for 30 + years I could never tell anyone I was hypo. Sometimes, on some occasions it would have been helpful if I could. My non diabetic counsellor said to me "why don't you pop a note in to your sugar cube box saying -tell someone you are hypo". Do you know what, that was the best advice I have ever had. Before I never actually myself thought "you are hypo". I always thought "you need to eat, or you need to test"..... and I would but, I never told anyone. That note (and I wrote it on the lid) us enough of a prompt to now tell people. If I didn't tell anybody tgey would know now because its in my box and on the lid.
If I hadn't talked about my life, my thoughts, frustrations etc I would never have got that advice and help.
I think you are a very caring, loving, worried parent and it may take time to resolve but I would really sit down and try to understand just a little bit more, as I think its more than him just being obstinate..
I also know of others that have come off pumps. They are not for everyone, and perhaps your son did not have a pump that suited him... nothing wrong about that. However, it is soundin like your son may need some advice / help around managing diabetes and his thoughts around it all.. ie getting in way of fitting in with his friends/hobbies etc..some hosputals have a psychologist attached to the diabetes unit to help patients that are struggling getting diabetes management fitting in with their life. Thats what it is effectively boils down to.. it isn't nice having to carry injections and fest kits everywhere.. especially a chap.. women can put in handbag!! Where do men put their stuff? If I went to nightclubs etc or a pub and fancied anything to eat etc.. I had stuff in handbag, where do teenage boys put theirs when they want to go out?? Straight question.. I haven't got a clue?!! The world today is all about fitting in, nobody wants to be different. Crikey, to be honest it would annoy me when everybody else jyst dived in to their food and I had forgotten to test/inject ahead or didn't know what size food plate etc would be coming out if in a restaurant.... its tough...
Yea, it appears that he is obstinate but I don't actually think he is. I think he's trying to do his best at the moment. He may have thought that the pump was so hyped up at being the best tjing to help him-but he couldn't get his head wrapped around doing everything.....
Seriously I think the lad is struggling, not obstinate. I think it would be good to sit him down at a table (not on a comfy chair or settee or bed) and sit opposite him and really have a good listen to what he is feeling... rather than what he is or isn't doing.....
There may be techniques that could be used. Ie for 30 + years I could never tell anyone I was hypo. Sometimes, on some occasions it would have been helpful if I could. My non diabetic counsellor said to me "why don't you pop a note in to your sugar cube box saying -tell someone you are hypo". Do you know what, that was the best advice I have ever had. Before I never actually myself thought "you are hypo". I always thought "you need to eat, or you need to test"..... and I would but, I never told anyone. That note (and I wrote it on the lid) us enough of a prompt to now tell people. If I didn't tell anybody tgey would know now because its in my box and on the lid.
If I hadn't talked about my life, my thoughts, frustrations etc I would never have got that advice and help.
I think you are a very caring, loving, worried parent and it may take time to resolve but I would really sit down and try to understand just a little bit more, as I think its more than him just being obstinate..
Thank you all so much. I have just spoken to his old paediatric DSN so things are now looking a bot brighter. He is going to have a word with the adult DSN and see if between us we can work something out with him. I was at my lowest last night but things are looking a bit brighter and alot of that is down to all the replies from a very caring community. You lot out there. Thank you
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That is great news @262trudles 
Do try and encourage your son to join the forum as having peer support is a great help. Good luck.
Do try and encourage your son to join the forum as having peer support is a great help. Good luck.
I'm at 21 year old and even though I haven't ever completely stopped taking inlsuin I certainly have had some resistance and not always controlled it 100% talking from experience here I wonder whether H he feels like his diabetic team aren't listening to him if he still on the insulin that hurts, this happened to me and it took me having a new diabetic nurse who actually just sat and listened to what I was saying. Maybe arrange a home visit and he just happens to be home kind of thing. Or is there anyone else who he could chat to that has an idea about the diabetes and could help him ? Also have you tried sitting down and just talking to him, because it might be something else that's bothering him and he's just taking it out on the diabetes.
I hope this helps, and I know I'm not a parent so don't have any advice re that but I'm just trying to help you understand his rational
I hope this helps, and I know I'm not a parent so don't have any advice re that but I'm just trying to help you understand his rational
Have spoken to him tonight he keeps saying it is just the pain nothing else wrong. His DSN is supposed to be getting in touch with him tomorrow and hopefully he will meet up and see about changing to a different insulin. It doesn't matter that you aren't a parent your experience is just as important and gives another perspective.
How wise you are, I have never asked for help before and am overwhelmed by everyones generosity. I didn't really mean to call him obstinate just couldn't find the right word as I was feeling scared. His dad, my husband, passed away 10 years ago and I think his illness on the weekend brought it all out. He says it is nothing to do with that it is just the pain of the injection. He is fine doing his humalog so I have to believe him and be there for him. Thank you for your support.
donnellysdogs
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We can see you are caring and loving and thoughtful, worried parent!!
We all trying to help. I jyst know for myself that I have been labelled as obstinate sometimes... but I'm
actually not...
The only thing stuck in the back of my mind here is also that your son was effectively heading towards DKA with ketones at above 5 and being unwell. That is still saying that he isn't in control . Even on humalog only at the moment ge needs to know about tresiba and less required and definitely no pain.... but humalog is only designed to work for 3-5 hours..... so bedtime us he testing, is he testing in mornings?
Do you know what his levels are actually running at?
This needs to be sorted quite urgently as thank goodness you are involved!! But we are in festivities and this is the one time (well easter probably as well) that he needs background insulin. Certainly during festivities I have to increase my basal insulin!!
I really would not want him
In DKA and
It sounds really as if he was very close...
We share your agony and worry and just hope that our words help in some small way..
catapillar
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Have spoken to him tonight he keeps saying it is just the pain nothing else wrong. His DSN is supposed to be getting in touch with him tomorrow and hopefully he will meet up and see about changing to a different insulin. It doesn't matter that you aren't a parent your experience is just as important and gives another perspective.
If it's just the pain from lantus there are plenty of other basal insulins available. But none of them are going to magically land in his lap - he needs to go see the team to get a different insulin. Are these the first significant diabetic management decisions he has been making as an adult? To you think he is struggling with that transition? He can ask for you to come into the appointment with him if he wants to. Although it would probably benefit him to learn how to deal with diabetic management as an adult. He could ask for a referral to a health psychologist to help figure out why his decision making on it has become so destructive.
A vaguely sensible person suffering pain with lantus and not wanting to take it anymore would just call their DSN and ask for a change and carry on taking it, putting up with the 5 second sting for the couple of days or week of or so it takes for a change to be made. Simple. In contrast your son, who according to you knows the dangers of high blood sugar, decided to just stop taking lantus, not ask anyone for help changing basal insulin and in fact refuse any engagement with his healthcare team. This resulted in insufficient insulin and ketones, so he wasnt able to manage without a basal. He must know that's an extereme, destructive decision, if he won't talk to you about it a psychologist might be able to help him figure out the way and when a reason is identified figure out different coping mechanisms for that driver.
Robyn@29
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I totally agree with this. I've only been diabetic for 2 months, so I was already an adult, going out, doing things socially, I'd been to uni, done my partying. I think your son is literally struggling with how to be an adult and have diabetes. I've had to work out how to fit it in to my "old life" but your son is discovering going out to pubs or clubs etc and suddenly what what was easy and everyday (testing and injecting) is now a nuisance and he's probably resenting it a little bit. There are some really nice "man bags" out there, maybe suggest a little shopping trip... haha
Apologies if you've thought of all this already.
I am wondering if his personality has changed? My reason for asking is that i have heard that some drugs used can make changes and that it might explain his attitude. Not sure if this helps but if it is having an affect then maybe you could try a different approach to consider seeing his doctor?
donnellysdogs
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Lots of people suggesting a more in depth detailed look at what is going on...
Hope that the nurse will be able to look at it as a whole problem. It is very true, that there is an issue behind this if he just stopped off his own back, and didn't think that he needs a background insulin and do something like contacting nurse or telling you etc. He is not making good decisions around the management of diabetes. It really has to be done in league with health people not ending up in DKA etc...
I think somebody really has to help the lad to realise that if something isn't right that he needs to discuss more with health people and not just do his own thing if he doesn't really understand fully how insulins work..
Hope that the nurse will be able to look at it as a whole problem. It is very true, that there is an issue behind this if he just stopped off his own back, and didn't think that he needs a background insulin and do something like contacting nurse or telling you etc. He is not making good decisions around the management of diabetes. It really has to be done in league with health people not ending up in DKA etc...
I think somebody really has to help the lad to realise that if something isn't right that he needs to discuss more with health people and not just do his own thing if he doesn't really understand fully how insulins work..
H
He is still happy go lucky and smiley, still doing all the things he has always done. Whether he is thinking that he can do the job the pump did, humalog continuously, not sure. It was difficult to get him on the pump. We have always discussed ups and downs of high/low blood sugars. Wont read any of this. Offers to do 25 units in butt last night for him or wherever he wanted me to do it. Total refusal. Lantus pen has disappeared this morning along with any talk. DSN should be in contact with him today with a view to getting him on levemir ot tresiba. Thank you to all of you who have sent me support, words, encouragement and advice it has all been taken on board for now and future reference
Hi, it's sound as if your having a nightmare. You have to advise him and not tell him the wrongs and rights of not using back ground insulin. He is a adult now and is above the age of consent. But giving him your support and love , and not putting pressure on him, hopefully his mind will change. Stuck in there. Maybe he's just going through a burn out with his diabetes
slip
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He's currently living like a pump user but with out the continuous trickle of insulin - someone put up a video the other day of a medics guidance notes for dealing with a diabetic and the possibility of DKA, someone on a basal/bolus regime can take 2 or so days if they stop taking insulin to have issues, a pump user can be in DKA within 6hrs - all to do with having or not having slow acting insulin on board.
Please don't wait any longer to get his fear of Lantus resolved one way or another.
Please don't wait any longer to get his fear of Lantus resolved one way or another.
donnellysdogs
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Incidentally.. I know from pump cannula failures and highs occuring that my levels can go from 5 to 25 in less than an hour with no background insulin.
My concern is that son was very close to DKA and just thought he could stop taking background insulin and not seek help to get something that works.
That suggests that he needs to build a better bond of trust and relationship with his health professionals...
I know my old hospital had a specialist nurse that lived to help younger persons experiencing difficulties. This is a difficulty... I so wish you had a nurse that specialised in these difficult times.
It will all improve I am sure. Perhaps it is a case now of waiting for son to talk rather than asking.
Also, I know from my own personality that it used to annoy the heck out of me that my mum started really to label me as her diabetic daughter... not see me as her daughter 1st.... even when staying she would ask "are you high or low"
(After I left home)...in the end I had to say that "mum, if you want to know my blood levels 1) I am normally normal, not high or low and 2) would you like to phone me 10 tines a day and ask rather yhan just tjinking you have to ask now!!"
This of course, us tjinking on a longer term basis, nut perhaps a rest from diabetes chatting is needed until he raises it??
My concern is that son was very close to DKA and just thought he could stop taking background insulin and not seek help to get something that works.
That suggests that he needs to build a better bond of trust and relationship with his health professionals...
I know my old hospital had a specialist nurse that lived to help younger persons experiencing difficulties. This is a difficulty... I so wish you had a nurse that specialised in these difficult times.
It will all improve I am sure. Perhaps it is a case now of waiting for son to talk rather than asking.
Also, I know from my own personality that it used to annoy the heck out of me that my mum started really to label me as her diabetic daughter... not see me as her daughter 1st.... even when staying she would ask "are you high or low"
(After I left home)...in the end I had to say that "mum, if you want to know my blood levels 1) I am normally normal, not high or low and 2) would you like to phone me 10 tines a day and ask rather yhan just tjinking you have to ask now!!"
This of course, us tjinking on a longer term basis, nut perhaps a rest from diabetes chatting is needed until he raises it??
Fingers are crossed, along with everything else and mouth is shut for awhile. Thank you all, you are wonderful.
