Daughter struggling with newly diagnosed type 1

[AllanJT]

My eldest daughter was diagnosed with type 1 earlier this year (January). She is twenty years old this year. Initially she seemed to handle the diagnosis well, taking a pragmatic approach to it. My ex wife, her new partner and me went to the initial meeting with consultant and diabetic nurse, and we have all been working together to help our daughter adapt to life with diabetes. However, my daughter has started showing signs of not coping. And is clearly showing signs of depression. She has on occasion decided not to take her insulin.
I’ve tried to talk to her about it, and she opened up a little to me explaining that she hates being different. It also didn’t help that she was already feeling low because she didn’t do well with her A levels and missed out on going to university. Most of her friends left to attend university, so she has started to feel isolated. The diagnosis has added to that feeling.
She recently had a catch up with the diabetes clinic. She explained how she was feeling and that she was struggling to cope and keep her blood sugar levels down. The advice she got was to exercise more and that they would up the levels of her insulin. Whereas I know the exercise will no doubt help, as will the increased dose, it really wasn’t the support my daughter required.
I’m going to talk to our GP about what support they can give, however I just wanted to know if anyone else has had this type of experience? I’ve always been very supportive of my daughter and I’m usually the one she’ll confide in, however I feel like there’s more I can do to help; I’m just not sure how or where to turn next.

 

[Sally71]

Can the hospital put her in touch with other young people with type 1? Some parents from our hospital have got together and formed a support group, we get together occasionally for meet ups, camping, pantomimes at Christmas and so on. Our diabetes team also have a counsellor working with them, I think she runs some sort of youth group for diabetics, and the hospital have close affiliations with a youth group run by people with various disabilities and medical conditions, including some diabetics. It helps to get together with others in the same situation, so you don't feel so alone, you realise that your worries are exactly the same as the ones other people have had, and you can help each other and swap ideas on how to deal with things. It's also great to be able to let off steam and have a bit of a rant at people who understand exactly what you are going through because they've been there too!

I realise that your daughter is an adult now so I don't know how the available help compares, but worth a though perhaps. I hope you can find some help for her.

 

[Drummer]

Is there any chance of your daughter retaking her exams? She might find that going to a college rather than a school, meeting new people and having different teachers will help - she might also meet people who are having a far more difficult time than herself when looking after their day to day needs and get a bit of a different perspective on life.
If your GP is able to help as well, it could be just what she needs to get back on track.
I got a degree with the Open University - which was a bit lonely back then - but these days with the internet things are very different and it is far more interactive. There are a fair few universities which use the Open University teaching material as part of its courses. I met one person who had decided to go to a 'bricks and mortar' university after studying at the OU for some years as he worked. When he went along to enrol as a mature student he found that he had already done the first and second years of the course he had selected. The third year was done working in industry with one day a week of study, at home, with a meeting once a month with a tutor who worked with the OU anyway - and his job would qualify as that year, and then there was a further year attending the university proper. At the end of his time at university he had two different degrees as he finished the one he'd started with the OU as well.
It definitely is not a case of having missed the boat and thats the end of all hope.

 

[AllanJT]

Can the hospital put her in touch with other young people with type 1? Some parents from our hospital have got together and formed a support group, we get together occasionally for meet ups, camping, pantomimes at Christmas and so on. Our diabetes team also have a counsellor working with them, I think she runs some sort of youth group for diabetics, and the hospital have close affiliations with a youth group run by people with various disabilities and medical conditions, including some diabetics. It helps to get together with others in the same situation, so you don't feel so alone, you realise that your worries are exactly the same as the ones other people have had, and you can help each other and swap ideas on how to deal with things. It's also great to be able to let off steam and have a bit of a rant at people who understand exactly what you are going through because they've been there too!

I realise that your daughter is an adult now so I don't know how the available help compares, but worth a though perhaps. I hope you can find some help for her.

Hi Sally,

Thanks for the advice. I’ll definitely enquire with Hospital about what support they have to offer.

 

[AllanJT]

Is there any chance of your daughter retaking her exams? She might find that going to a college rather than a school, meeting new people and having different teachers will help - she might also meet people who are having a far more difficult time than herself when looking after their day to day needs and get a bit of a different perspective on life.
If your GP is able to help as well, it could be just what she needs to get back on track.
I got a degree with the Open University - which was a bit lonely back then - but these days with the internet things are very different and it is far more interactive. There are a fair few universities which use the Open University teaching material as part of its courses. I met one person who had decided to go to a 'bricks and mortar' university after studying at the OU for some years as he worked. When he went along to enrol as a mature student he found that he had already done the first and second years of the course he had selected. The third year was done working in industry with one day a week of study, at home, with a meeting once a month with a tutor who worked with the OU anyway - and his job would qualify as that year, and then there was a further year attending the university proper. At the end of his time at university he had two different degrees as he finished the one he'd started with the OU as well.
It definitely is not a case of having missed the boat and thats the end of all hope.

Hi,
The OU is a good shout. I’ll discuss the idea with my daughter. Thank you.

 

[Thebearcametoo]

The diabetes team should be able to put in a referral to a psychologist if you/she ask. My daughter is much younger (9) and was initially very chilled about her diagnosis but has since struggled. We looked at options of things like a Libre and other ways to make it more manageable in practical ways as well as working with a private therapist and waiting for the team psychologist appointment. It definitely helps if she can find other people who have been through a diagnosis. She’s at a big change in life anyway if she’s dealing with friendships changing etc so the diabetes on top will be difficult.

 

[Bronco Billy]

Hi AllanJT, welcome to the forum.

My daughter experienced similar psychological problem s to your daughter, although not for the same reasons. She was six when she was diagnosed and so ill, we nearly lost her. She remembered how she felt and what she went through, which caused a few issues in terms of acceptance. I’m a bit surprised the hospital team didn’t suggest a referral to CAMHS. She is at the age when the transition process from paediatric to adult services happens, each hospital does things their own way. Was she placed with the adult team straight away? If she is beyond the age at which the hospital would usually refer to CAHMS, there should still be a support service available. Regrettably, it seems as if yours is a case where the patient and the family need to take the initiative. Don’t be afraid to do this.

One disadvantage your daughter has is her age at diagnosis. She will have got used to a ‘normal’ life, but is now being forced to make some major changes. This may be one of the causes of her issues.

Good luck.

 

[Lisa66]

Hello Allan

It’s a tricky one as we are all so different with the way we feel about our own diabetes. It’s still early days for your daughter and the learning curve can go on for quite some time. I’m still learning things after 41 years. To be honest there’s no great age to get it is there? Different ages, different life stages, different personalities, different issues. A couple of years ago somebody told me how lucky I was to be diagnosed as a child, as it meant I’d had plenty of time to get used to the diet etc. Really?! Anyway I digress.

It’s great that you and your daughter are able to talk...a massive positive to helping her. However, as I’m sure many parents find, it is a fine line, trying to get the balance between concern and not making your child feel different from their siblings and friends. I can remember feeling different to my friends at school, despite the efforts of my parents that I shouldn’t be treated any differently.

How big is the team that looks after your daughter? There are several specialist nurses where I am and I wonder if it’s worth seeing if there’s someone else you can chat to and explain how your daughter is feeling, or the same nurse away from the time constraints and atmosphere of a clinic, your concern and call may have more impact.

My mum tried to get me to talk to others with diabetes. Even starting a support group for parents. At that time being slightly younger than your daughter, I’m not sure any of the children really wanted to chat to each other. Nowadays there are many young people with type 1 on Facebook and writing blogs, maybe your daughter has already seen these. Definitely chatting to others in the same situation helps you feel less isolated. It’s what I get from this forum🙂.

I obviously don’t know what your daughter is doing now and can understand how she feels left behind having missed out...for now...at going to uni. She has several issues to process. How would you chat to your daughter about this if she didn’t have diabetes? Whilst I appreciate it’s the main focus at the moment, it’s a small part of who she is. My son (not diabetic) missed out on going to uni due to an incorrectly marked A level. But actually after the initial major frustration and disappointment disappeared, it worked out to be a good year. He focused on working towards getting there, he travelled, did some charity work and this took his mind off the negatives.

The Libre sensor has already been mentioned and I don’t know if your daughter has one. If she hasn’t I would highly recommend looking into getting one...a quick discreet swipe of one’s arm with a reader / phone and you can see what you level is and where it’s heading...less finger pricking required. I can’t tell you how much easier this has made life for me.

Others have touched on seeing a professional to chat to which is good, it’s not something I have any knowledge of.

After my long ramble (sorry) I will just say that hopefully this is just a little blip for your daughter, we’ve all had / have them. In the last 41 years though, I don’t think that my diabetes has really stopped me doing anything, despite all the stories I was told at the start. Some things just take a few extra minutes planning etc. There’s lots of technology that makes life much easier now. Take a look around the forum and quick google search and you’ll see that type 1 really doesn’t have to stop us doing anything.

Above all, I guess just keep her aware that you’ll always there to listen and chat, diabetes or not. Best of luck.

 

[AllanJT]

The diabetes team should be able to put in a referral to a psychologist if you/she ask. My daughter is much younger (9) and was initially very chilled about her diagnosis but has since struggled. We looked at options of things like a Libre and other ways to make it more manageable in practical ways as well as working with a private therapist and waiting for the team psychologist appointment. It definitely helps if she can find other people who have been through a diagnosis. She’s at a big change in life anyway if she’s dealing with friendships changing etc so the diabetes on top will be difficult.

Hi,
Thanks for the response. I agree my daughter would benefit from interacting with people in her age group who have diabetes

 

[AllanJT]

Hi AllanJT, welcome to the forum.

My daughter experienced similar psychological problem s to your daughter, although not for the same reasons. She was six when she was diagnosed and so ill, we nearly lost her. She remembered how she felt and what she went through, which caused a few issues in terms of acceptance. I’m a bit surprised the hospital team didn’t suggest a referral to CAMHS. She is at the age when the transition process from paediatric to adult services happens, each hospital does things their own way. Was she placed with the adult team straight away? If she is beyond the age at which the hospital would usually refer to CAHMS, there should still be a support service available. Regrettably, it seems as if yours is a case where the patient and the family need to take the initiative. Don’t be afraid to do this.

One disadvantage your daughter has is her age at diagnosis. She will have got used to a ‘normal’ life, but is now being forced to make some major changes. This may be one of the causes of her issues.

Good luck.

Hi,
Yes I believe she was placed with the adult team. Thanks for the kind words of encouragement this transition stage for her is part of the issue.
Thanks

 

[AllanJT]

Hello Allan

It’s a tricky one as we are all so different with the way we feel about our own diabetes. It’s still early days for your daughter and the learning curve can go on for quite some time. I’m still learning things after 41 years. To be honest there’s no great age to get it is there? Different ages, different life stages, different personalities, different issues. A couple of years ago somebody told me how lucky I was to be diagnosed as a child, as it meant I’d had plenty of time to get used to the diet etc. Really?! Anyway I digress.

It’s great that you and your daughter are able to talk...a massive positive to helping her. However, as I’m sure many parents find, it is a fine line, trying to get the balance between concern and not making your child feel different from their siblings and friends. I can remember feeling different to my friends at school, despite the efforts of my parents that I shouldn’t be treated any differently.

How big is the team that looks after your daughter? There are several specialist nurses where I am and I wonder if it’s worth seeing if there’s someone else you can chat to and explain how your daughter is feeling, or the same nurse away from the time constraints and atmosphere of a clinic, your concern and call may have more impact.

My mum tried to get me to talk to others with diabetes. Even starting a support group for parents. At that time being slightly younger than your daughter, I’m not sure any of the children really wanted to chat to each other. Nowadays there are many young people with type 1 on Facebook and writing blogs, maybe your daughter has already seen these. Definitely chatting to others in the same situation helps you feel less isolated. It’s what I get from this forum🙂.

I obviously don’t know what your daughter is doing now and can understand how she feels left behind having missed out...for now...at going to uni. She has several issues to process. How would you chat to your daughter about this if she didn’t have diabetes? Whilst I appreciate it’s the main focus at the moment, it’s a small part of who she is. My son (not diabetic) missed out on going to uni due to an incorrectly marked A level. But actually after the initial major frustration and disappointment disappeared, it worked out to be a good year. He focused on working towards getting there, he travelled, did some charity work and this took his mind off the negatives.

The Libre sensor has already been mentioned and I don’t know if your daughter has one. If she hasn’t I would highly recommend looking into getting one...a quick discreet swipe of one’s arm with a reader / phone and you can see what you level is and where it’s heading...less finger pricking required. I can’t tell you how much easier this has made life for me.

Others have touched on seeing a professional to chat to which is good, it’s not something I have any knowledge of.

After my long ramble (sorry) I will just say that hopefully this is just a little blip for your daughter, we’ve all had / have them. In the last 41 years though, I don’t think that my diabetes has really stopped me doing anything, despite all the stories I was told at the start. Some things just take a few extra minutes planning etc. There’s lots of technology that makes life much easier now. Take a look around the forum and quick google search and you’ll see that type 1 really doesn’t have to stop us doing anything.

Above all, I guess just keep her aware that you’ll always there to listen and chat, diabetes or not. Best of luck.

Hi,
Thanks very much. Your insights from your experience have helped. We’ll look into the Libre too.
Thanks

 

[SB2015]

I wasn’t diagnosed as early as your daughter (I was 53) but I found there was so much to learn initially I hadn’t got time to feel depressed about it. That happened later, as it has for your daughter. There is a self referral option here to a team who support people dealing with a long term health condition. I had to wait quite a while but then the counsellor happened to be someone with T1 and was excellent.

Recently my Consultant suggested that I would benefit from talking to others with T1. I went to an extreme, only because with a background in teaching it suited me, and I volunteered on a DUK T1 Family Weekend. Whilst working with the families and young children was brilliant, I think the biggest thing for me was meeting with so many young people with T1, who had such a positive attitude. We were all testing, jabbing, swiping, ... and it was good to feel so ‘normal’. They were also very supportive of each other. They recommended using Facebook, which I am not so keen on (but then I am ‘old’ so much happier on here). There is clearly a lot of support available on there from others with T1, so that might be worth a try.

From the point of view of uni, waiting a year can be very useful. She has the chance to improve grades, perhaps at a college rather than back to school, and can reapply to places where the grades that she has make it accessible.

Friendship groups change so much around transition to university and whatever she does there will be new people to meet. The diabetes can then sometimes rear it’s head as it has a tendency to throw a spanner in the works on occasions. I worked out with w student that I taught, who was also diagnosed with T1, a set answer of what we would tell new people. It was useful as a starter when it became necessary, and as we both grew in confidence we needed it less often, and deviated from it.

A long ramble, but I hope that it is of some help.

 

[Jues]

My son was diagnosed on friday with Type 1, he is also 20 and really struggling, his sugars are still high, his lowest today before lunch was 12.5 and he was over the moon, just done it before his tea and it's up at 23.4, he keeps says he wants to kill himself. Why are they fluctuating so much, I realise it's only day 2 of his insulin plan but he is really struggling. I'm scared for him, is this because the insulin hasn't yet started working correctly I just dont know? Please advise I dont know how to help him

 

[Thebearcametoo]

My son was diagnosed on friday with Type 1, he is also 20 and really struggling, his sugars are still high, his lowest today before lunch was 12.5 and he was over the moon, just done it before his tea and it's up at 23.4, he keeps says he wants to kill himself. Why are they fluctuating so much, I realise it's only day 2 of his insulin plan but he is really struggling. I'm scared for him, is this because the insulin hasn't yet started working correctly I just dont know? Please advise I dont know how to help him

The insulin is working but the dose may not be correct yet. It can take a while to fine tune all the numbers.

Which insulin(s) is he on? Has he been taught about carb counting?

It’s worth letting him know that his numbers can make him feel terrible and that his mood will stabilise as his glucose gets more under control. It’s normal for it to take a few weeks to get it nearer to target but even then 23 is still high. Has he had some more insulin now?

 

[SB2015]

Hi @Jues

Your sons levels are as you say still very high. His team will work with him to bring these down, and he will start to feel better, both physically and emotionally. When he is seeing the Diabetes Specialist Nurse again?

He is definitely not getting enough insulin to match what he is eating. Does he eat meals that are very heavy with carbohydrates (potatoes, pasta, rice , bread). Having T1 does not mean that he can’t eat these , but he needs to be taught how to match his insulin to what he wants to eat.

Can you contact his team yourself? It is important that they are aware of how he has reacted to his diagnosis. I know that we have said before that this is manageable but it is such a shock. I hope that he can get the support that he needs.

 

[Lizzzie]

Hi. Poor woman! I feel for her.

There are lots of awesome people doing awesome things who a) didn't get their first puck of education route or b) got type 1 diabetes, and quite a lot of people who fall into both camps. (Meeeee!) Many of these people are fantastic and admirable and now living a life that they love.

However, it's ok for her not to be happy about the direction her life's taken at the moment and she might need to.hear that. Its normal.and ok to find diabetes utterly stressful and a bit ball-and-chain-like at times - but it is also part of who we are, and can help us to be better people too.

Its a big leap of faith - and small steps - to take all this in and a huge shout out for you who are obviously doing your best to support her.

People aren't logical, sadly - I know I wasn't when I was diagnosed - but if we accept that we have to take care of our feel I gs and seek help dir them too, we do better

 

[Schrodinger]

Allan are you any where near Manchester?

The only reason I ask is that there is a big T1 meet up going on there in the next couple of weeks, which may help.