Hi, this is the first time I've thought about getting some support but I've been struggling with coping with my daughter who was diagnosed Type 1 last summer age 16. She'd been ill for a while but not so ill that the GP thought anything was seriously wrong, just teenage angst. Not until she nearly collapsed and was rushed to A&E was she diagnosed. She seemed to cope with it well at first but a year on and she has stopped taking blood sugar readings and just guesses her insulin dose. She is depressed and is on Prozac. I can't say too much as she just shrugs me off and she is now 18 but it is breaking my heart to watch her and I'm at a loss as to how to support her. Any advice or just to chat would be welcomed x
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struggling Mother
- Thread starter Cazzy
- Start date
- Status
Copepod
Much missed Moderator
- Relationship to Diabetes
- Type 1
Welcom Cazzy - and sorry you have to be here.
There are several members who lived through teenage years with type 1 diabetes, plus parents of those going through teenage years now, who will be able to help with specific issues.
What is your daughter doing - school / college / apprenticeship etc? What is important to her - drama / art / music / sports etc?
You may find Children With Diabetes group useful, although I'm not sure at what age their definition of "child" ends - see http://www.childrenwithdiabetesuk.org/
There are several members who lived through teenage years with type 1 diabetes, plus parents of those going through teenage years now, who will be able to help with specific issues.
What is your daughter doing - school / college / apprenticeship etc? What is important to her - drama / art / music / sports etc?
You may find Children With Diabetes group useful, although I'm not sure at what age their definition of "child" ends - see http://www.childrenwithdiabetesuk.org/
Thanks Cotepod, she's studying Alevels and is really into art and wants to do an art degree but because of the depression she's lost her motivation and struggles on a daily basis to get to 6th form. We tried to be positive re the diabetes from the start and not make a big deal of it but inside I have been grieving I think for the life she was supposed to have (I realise of course there are much worse things but it's all relative). It will be a help to talk to other parents going through the same thing definitely x
delb t
Well-Known Member
- Relationship to Diabetes
- Parent
Hi Cazzy- my son is 16 and has been dx for nearly a year at the moment he does all he is supposed to do and my biggest fear is that in the future he wont -the only thing I think in a barmy way helped, is his mates dad is Type 1 and has been for 20 odd years and is totally not in control.About a week or 2 in to his dx I went to pick my son up from their house and this dad demonstated his night hypos big style to us both-I nearly freaked out never mind my son who at that point had never had a bad hypo never mind one during the night -maybe in an odd way this has helped him . Would your team have a counselling service they can offer her? Be strong- Tina63 ( hope you dont mind me suggesting you tina) may have some thoughts to help- welcome as well
Hanmillmum
Well-Known Member
- Relationship to Diabetes
- Parent
Hello and welcome 🙂
Sorry to hear about the problems you are having with your daughter, hope there is some light at the end of the tunnel soon!
I was just wondering if the Prozac was actually helping, has she been on it long ? If she has and is still struggling to such a degree as you describe it may be worth a review with whoever prescribed it ( If it's still early days fine). Counselling or some psychological support would be a positive step too if she is giving you the shrug off!
Best wishes x
Sorry to hear about the problems you are having with your daughter, hope there is some light at the end of the tunnel soon!
I was just wondering if the Prozac was actually helping, has she been on it long ? If she has and is still struggling to such a degree as you describe it may be worth a review with whoever prescribed it ( If it's still early days fine). Counselling or some psychological support would be a positive step too if she is giving you the shrug off!
Best wishes x
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Caz, welcome to the forum.
So sorry to hear both you and your daughter are struggling to come to terms with the diabetes diagnoses
Does your daughter by any chance use Lantus as her basal? Some but not all find it causes depression.
Another cause of the depression can be high blood sugars. So perhaps finding some links on the effect of high blood sugars may help her to understand the need to get on top of them.
Best wishes
Sue
So sorry to hear both you and your daughter are struggling to come to terms with the diabetes diagnoses
Does your daughter by any chance use Lantus as her basal? Some but not all find it causes depression.
Another cause of the depression can be high blood sugars. So perhaps finding some links on the effect of high blood sugars may help her to understand the need to get on top of them.
Best wishes
Sue
Hi Cazzy
And welcome from me too. My son is in a similar situation, but without the depression. He was diagnosed 23 months ago, days short of his 16th birthday. For the first 6 months he did everything spot on, tested, injected, the only thing he didn't do was transfer it to his record diary that the clinic like to see, so I used to do that bit. His HbA1c on diagnosis was 15.8, 6 months in it was down to 6.1.
Then, 6 months in, he started skipping doses. At the time it was put down to GCSEs. He was scared of having hypos mid exam so would skip his insulin at breakfast if it was a morning exam, or lunchtime if it was an afternoon exam. Clinic noticed these odd spikes in his diary which had previously had textbook readings most of the time, but when he told them what he had been doing, their response was to almost shrug their shoulders and say "well you are bringing it back into line later in the day so it doesn't matter". That just gave him licence to start skipping doses. All that summer (last year) he skipped more and more doses, and along with that stopped testing. I guess initially because he knew the numbers would be 'wrong' so didn't want any evidence.
Come September last year, he went back to 6th form to do A levels. All of his friendship group had left and moved to other colleges or work, so he was in with a new peer group. He had promised at clinic that he would bring things back into line once back at school and back to routine after having such a long summer break after GCSEs, but when it came to it, with a new friendship group, he wasn't comfortable testing and injecting at school at all. He stopped completely, not even carrying a pen or meter with him. By Christmas his HbA1c was back up to 11 or 12, and clinic were rather alarmed. They tried to work with him and asked why he wasn't injecting etc, so when he explained his new situation, they suggested him using a mixed insulin at breakfast so he didn't have to inject at school. Still to use Novorapid at teatime and Lantus at bedtime.
Well for the past 12 months his control has been dire. He goes literally months without testing at all. He last tested early September, following an alcohol fuelled admission to hospital (a one-off with a friend being left home alone, so threw an impromptu party with bottles of spirits) as his blood sugars went off the top of his meter and he was as good as unconscious. He 'forgets' his Lantus most days, and only occasionally bothers with the Novorapid. The only thing he uses most days is his M3 in the mornings. The hospital threatened to admit him April/May/June when they were seeing him monthly with his HbA1c well into the 12s, but on the one occasion they actually said they were going to, he said "No thank you" and they let him go!!! I have despaired.
He has in the last 3 months been passed up to the transition team at a new hospital. He has gelled better with his new DSN who is much nearer his age, and I really thought things were improving, but 4 weeks ago his HbA1c was 12.8 so they were far from happy. I believe the consultant tore him off a strip and he broke down, and at long last they agreed he needs to see the psychologist, something I had been asking for for months. Well even that isn't going smoothly, the psychologist only got round to phoning him 2 days ago and his appointment is in 2 months time 😱 He was seen again by the consultant last Thursday but doesn't tell me anything they say at all. He has his annual review in 4 weeks time, so we will see how things are then.
Oh, and this summer his AS level results came out - Us across the board. Quite a shock given his GCSE results. He has since left school and started a different course at college. Things are going better there, but who knows how things will pan out long term.
So, though I have no magic wand to wave, all I can say is that you are not alone. I worry sick about my boy at times. I am lucky that apart from being a normal hormonal arsey teenage boy he is actually well in himself, but it worries me sick the damage he may be doing to himself. He did open up a bit a few weeks ago saying how it completely took over his life the first 6 months, testing, injecting, being mindful of what he ate etc, and being anxious about leaving the house in case of hypos, but now admits that with his control so dire his need for the toilet constantly also restricts him. I can't talk to him about it though. Something came up yesterday so I said something diabetes related and he just shouted at me saying that I think I know it all, when in fact I actually know nothing. I did respond saying I know I can't possibly know what it's like to be him, but that I do actually know a lot about it, and that it's not easy for me either. He just walked off slamming the door behind him!
I am like you, I don't know what more I can do. I now leave him to it most of the time, but I do keep an eye on his pen levels so I know what is going on. He took a new Lantus pen over 4 weeks ago. If he was using it properly it would last him 9 days, well the same pen is still in his room (I must throw it away as its over 4 weeks old now) and only 6 doses have gone in an entire month. The same with the Novorapid too, that is a month old now and still has quite a lot left. I wouldn't expect that to go so quickly, but he just seems to inject very large random slugs of that though, sometimes as much as 30u in one go! Mind you, last night he came home from work tucking into a large bag of Haribos. Goodness only knows how many carbs in there, but I wouldn't be remotely surprised if he at the whole bag himself. I just don't understand how he is still standing.
Every time something little happens, I think to myself that this is just the breakthrough I was hoping for, yet normally within 48 hours he is back to his old ways. I have just given up hope now! One day he will see the light, but I just don't know when.
Anyway, this forum has been a wonderful source of support and suggestions. Please keep posting on here. It's good just to get things off your chest occasionally. And just because our children are older, it doesn't stop us caring or worrying any less. I still sleep with one ear open, and can be out of bed at a shot if I hear anything out of the ordinary. That just winds my lad up, but I can't stop being me!
Tina
And welcome from me too. My son is in a similar situation, but without the depression. He was diagnosed 23 months ago, days short of his 16th birthday. For the first 6 months he did everything spot on, tested, injected, the only thing he didn't do was transfer it to his record diary that the clinic like to see, so I used to do that bit. His HbA1c on diagnosis was 15.8, 6 months in it was down to 6.1.
Then, 6 months in, he started skipping doses. At the time it was put down to GCSEs. He was scared of having hypos mid exam so would skip his insulin at breakfast if it was a morning exam, or lunchtime if it was an afternoon exam. Clinic noticed these odd spikes in his diary which had previously had textbook readings most of the time, but when he told them what he had been doing, their response was to almost shrug their shoulders and say "well you are bringing it back into line later in the day so it doesn't matter". That just gave him licence to start skipping doses. All that summer (last year) he skipped more and more doses, and along with that stopped testing. I guess initially because he knew the numbers would be 'wrong' so didn't want any evidence.
Come September last year, he went back to 6th form to do A levels. All of his friendship group had left and moved to other colleges or work, so he was in with a new peer group. He had promised at clinic that he would bring things back into line once back at school and back to routine after having such a long summer break after GCSEs, but when it came to it, with a new friendship group, he wasn't comfortable testing and injecting at school at all. He stopped completely, not even carrying a pen or meter with him. By Christmas his HbA1c was back up to 11 or 12, and clinic were rather alarmed. They tried to work with him and asked why he wasn't injecting etc, so when he explained his new situation, they suggested him using a mixed insulin at breakfast so he didn't have to inject at school. Still to use Novorapid at teatime and Lantus at bedtime.
Well for the past 12 months his control has been dire. He goes literally months without testing at all. He last tested early September, following an alcohol fuelled admission to hospital (a one-off with a friend being left home alone, so threw an impromptu party with bottles of spirits) as his blood sugars went off the top of his meter and he was as good as unconscious. He 'forgets' his Lantus most days, and only occasionally bothers with the Novorapid. The only thing he uses most days is his M3 in the mornings. The hospital threatened to admit him April/May/June when they were seeing him monthly with his HbA1c well into the 12s, but on the one occasion they actually said they were going to, he said "No thank you" and they let him go!!! I have despaired.
He has in the last 3 months been passed up to the transition team at a new hospital. He has gelled better with his new DSN who is much nearer his age, and I really thought things were improving, but 4 weeks ago his HbA1c was 12.8 so they were far from happy. I believe the consultant tore him off a strip and he broke down, and at long last they agreed he needs to see the psychologist, something I had been asking for for months. Well even that isn't going smoothly, the psychologist only got round to phoning him 2 days ago and his appointment is in 2 months time 😱 He was seen again by the consultant last Thursday but doesn't tell me anything they say at all. He has his annual review in 4 weeks time, so we will see how things are then.
Oh, and this summer his AS level results came out - Us across the board. Quite a shock given his GCSE results. He has since left school and started a different course at college. Things are going better there, but who knows how things will pan out long term.
So, though I have no magic wand to wave, all I can say is that you are not alone. I worry sick about my boy at times. I am lucky that apart from being a normal hormonal arsey teenage boy he is actually well in himself, but it worries me sick the damage he may be doing to himself. He did open up a bit a few weeks ago saying how it completely took over his life the first 6 months, testing, injecting, being mindful of what he ate etc, and being anxious about leaving the house in case of hypos, but now admits that with his control so dire his need for the toilet constantly also restricts him. I can't talk to him about it though. Something came up yesterday so I said something diabetes related and he just shouted at me saying that I think I know it all, when in fact I actually know nothing. I did respond saying I know I can't possibly know what it's like to be him, but that I do actually know a lot about it, and that it's not easy for me either. He just walked off slamming the door behind him!
I am like you, I don't know what more I can do. I now leave him to it most of the time, but I do keep an eye on his pen levels so I know what is going on. He took a new Lantus pen over 4 weeks ago. If he was using it properly it would last him 9 days, well the same pen is still in his room (I must throw it away as its over 4 weeks old now) and only 6 doses have gone in an entire month. The same with the Novorapid too, that is a month old now and still has quite a lot left. I wouldn't expect that to go so quickly, but he just seems to inject very large random slugs of that though, sometimes as much as 30u in one go! Mind you, last night he came home from work tucking into a large bag of Haribos. Goodness only knows how many carbs in there, but I wouldn't be remotely surprised if he at the whole bag himself. I just don't understand how he is still standing.
Every time something little happens, I think to myself that this is just the breakthrough I was hoping for, yet normally within 48 hours he is back to his old ways. I have just given up hope now! One day he will see the light, but I just don't know when.
Anyway, this forum has been a wonderful source of support and suggestions. Please keep posting on here. It's good just to get things off your chest occasionally. And just because our children are older, it doesn't stop us caring or worrying any less. I still sleep with one ear open, and can be out of bed at a shot if I hear anything out of the ordinary. That just winds my lad up, but I can't stop being me!
Tina
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Cazzy - {{{Hugs}}} firstly. To both of you.
You said a word there that you may not have realised the actual significance of. The word 'grieving'.
Does it occur to you that, if YOU are grieving, then she must be too, whether she can identify her feelings as grief, or not. She probably has no prior experience in that department. I know I didn't when I was diagnosed at 22 and I didn't realise it had been that, until I was well over 50 when I was pointed at some words of wisdom; 'The Five Stages of Grief' by Elisabeth Kubler-Ross.
Here's a link to them -
http://www.diabetes-support.org.uk/info/?page_id=50
Should be compulsory reading for all diabetics as soon as they have enough knowledge to grasp the concept.
I wonder if you couldn't say someone pointed you at this and perhaps reading it might help you each understand what's going on underneath, for both of you?
Of course as I've said to someone else on another thread this morning - the most important thing is actually to talk. HCPs and counsellors are all very fine, but other people with D and prior experience of exactly the same things she and you are going through themselves, are a huge help to all of us. And it's also helpful in some ways when they have no pre-conceived ideas about you and certainly don't expect anyone to be the perfect textbook diabetic!
WE all know by now that WE ain't. So why should anyone else? (If they say they are, they are probably lying and it's as simple as that. IMHO it isn't humanly possible. Not ALL the time. Or, they must lead very boring and uneventful lives ......)
You said a word there that you may not have realised the actual significance of. The word 'grieving'.
Does it occur to you that, if YOU are grieving, then she must be too, whether she can identify her feelings as grief, or not. She probably has no prior experience in that department. I know I didn't when I was diagnosed at 22 and I didn't realise it had been that, until I was well over 50 when I was pointed at some words of wisdom; 'The Five Stages of Grief' by Elisabeth Kubler-Ross.
Here's a link to them -
http://www.diabetes-support.org.uk/info/?page_id=50
Should be compulsory reading for all diabetics as soon as they have enough knowledge to grasp the concept.
I wonder if you couldn't say someone pointed you at this and perhaps reading it might help you each understand what's going on underneath, for both of you?
Of course as I've said to someone else on another thread this morning - the most important thing is actually to talk. HCPs and counsellors are all very fine, but other people with D and prior experience of exactly the same things she and you are going through themselves, are a huge help to all of us. And it's also helpful in some ways when they have no pre-conceived ideas about you and certainly don't expect anyone to be the perfect textbook diabetic!
WE all know by now that WE ain't. So why should anyone else? (If they say they are, they are probably lying and it's as simple as that. IMHO it isn't humanly possible. Not ALL the time. Or, they must lead very boring and uneventful lives ......)
Hi cazzy, I volunteered & took part in a kids hoilday this year run by Duk, It was ex for the kids. I know they do them for 18yr olds for a couple of days in the lakes.scotland & south coast. You will get a rest & she might learn off other kids of her own age. You dont need the stress. Dont think dates are up yet for next year yet but have a look in new year. 🙂🙂
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