Teenagers and KDA

[Fiona Mayers]

Hello
I am a type 1 diabetic mum of two boys both type 1 my eldest is 19 and won’t takenhis insulin and is in and out of hospital with KDA - does anyone have any tips on encouraging teenagers ..... he was diagnosed at 5 and my other son at 2
He fully understands the ins and outs of diabetes but just wants to be “normal”

 

[Kaylz]

I think you may mean DKA?

Does he work closely with a diabetes team? Have you spoken to him and asked him what it is that's stopping him taking his insulin? Is it because he just wants to be "normal" or are there maybe other, deeper reasons? Have you considered asking if he would speak to a counselor?
xx

 

[Toucan]

Hello @Fiona Mayers
Welcome to our forum.
It sounds like it's being a very difficult time for your son and yourself. As well as the other issues of growing up, dealing with his Diabetes must be very hard for him.

There are several other parents on the forum who have teenage children living with Diabetes, and I will copy some of them in to this message and hopefully they will be along soon to try and help.(@LucyDUK @stephknits )

Also, if you look down the list of forums you will see a 'Parents' section and if you have a browse around, there may be some topics and strings there that may be of help.

 

[Inka]

Hi @Fiona Mayers

How stressful for you I second the idea of a counsellor. That would allow your son to get things off his chest. I think people underestimate the amount of anger having diabetes can cause, especially when you’re young. I also think ‘burnout’ is very common - just having enough of the whole thing after having it for years. Another possible reason is realisation - the realisation as a more mature young person that Type 1 is a chronic condition.

Of course, there are also the normal teenage concerns to deal with - which can be made ten times worse by Type 1.

I’m presuming he’s on injections? If so, do you think a pump might help him? It would be less visible and give him more flexibility. My pump, for example, is controlled by an app on my phone, so sitting down for a meal with friends means all I have to do is fiddle with my phone not get out an insulin pen and be ‘obvious’ about my diabetes.

A final suggestion - would he join this forum? Many, many people here understand the frustration and upset diabetes can cause and will understand what he’s going through. Please assure him that we’re not perfect and we will totally get any negative feelings he has.

 

[Thebearcametoo]

Is he now under adult care? I think the transition from paediatric care into the adult service can be very difficult for a lot of teens not just in diabetes but lots of chronic health conditions.

He needs some psychological support but again that will be very difficult given he’s in that transition age. Is he at uni or working or at home? Finding ways for him to access appropriate support may take a little research. If he’s at uni or about to go to uni then student services may be able to support him. Some workplaces have access to counselling via HR. Otherwise your local MIND may have ways to support him. Have the hospital referred him for counselling? Repeated DKA is a sign of needing more support both with his diabetes and his mental health.

The ‘just wants to be normal’ feeling is very common for chronic conditions. The problem for him is that his best chance of being normal is to have good close management of his diabetes. That will give him the best chance of a longer life with fewer issues. He may well be depressed on top of fed up. A chat with his GP may be a good way to get the help and support needed for both his diabetes and mental health. You can talk to the GP (or write to them) if he won’t let you go to appointments with him.

What support do you have? As a carer you need to look after your own mental health too. Keep you GP in the loop about how you’re feeling and whether you’re coping (we worry about our kids, it’s distressing to see them in pain).

 

[everydayupsanddowns]

Welcome to the forum @Fiona Mayers

So sorry to hear about the struggles that your son is facing.

From what I can tell this is not at all uncommon. T1 can be relentless, unforgiving and very isolating. Add a little teenage rebellion, sense of invincibility, and raging hormones, plus a transition into adulthood into the mix and it’s more or less a perfect storm.

What is his relationship like with his brother? Does having someone close to him help with the same struggles of carrying on day to day? What would he say to his little brother if he stopped taking insulin, and was putting himself at risk of complications and the high risk of DKA itself?

It’s unfortunate that so many peer support events and projects are unable to run at the moment - I wonder if getting together with peers might help him feel less alone and more accepting of his diabetes?

Please do ask for support from a qualified and experienced counsellor / psychologist who specialises in diabetes.

Living with T1 is like living with a tiger. You can live with it if you are careful, if you feed it and look after it... but if you ignore it and turn your back on it, it can tear you to shreds (Wil Dubois)

 

[everydayupsanddowns]

There may be some useful pointers and tips here too?

Home - DigiBete

Welcome to DigiBete, a place to help young people, families and communities to manage Type 1 Diabetes.

www.digibete.org

 

[eggyg]

This may seem harsh, and I don’t want to upset anyone, but if he doesn’t take his insulin he won’t be “ normal”. He may lose his sight and or a limb, he may end up on dialysis. That’s not “ normal”. I really feel for you as a parent, does he know how upsetting it is for you? Can he talk to someone his age with diabetes? He really, really needs help and maybe some tough talking, whether that’s from a professional or maybe even another family member, grandparent, aunt, uncle, sibling. I hope he finds the help he needs sooner rather than later. Take care and good luck.

 

[Sally71]

Does he drive? Or does he want to learn? Because if he doesn’t get his diabetes under control he either won’t be allowed a licence in the first place or will end up losing it. Maybe that will mean more to him than looking after his health?

 

[stephknits]

Hi and welcome. What a worrying time for you. My daughter is 16, but only just diagnosed, so no burn out yet. As others have said, transition to adult care is very tough and this is a particular danger time for young people. Also so difficult at home. You go from looking after every aspect of their care to them suddenly being an adult and you have no say. If he lives at home, aside from suggestions above regarding psychologist (although much more difficult to access for adults), have you tried offering to give him a type 1 'holiday' where you take over his care again for a week. Calculate his carbs, do injections etc. Sometimes just having a bit of a break can help.
Wishing you all the luck with it.

 

[Deleted member 27171]

Hi @Fiona Mayers

This must be so hard for you, I really feel for you both.

Has he been offered any psychological support? Repeated DKA admissions are usually a flag for hospital staff that someone is struggling and he must be to keep putting himself through this. I imagine he’s all to aware of the risks he is taking with his long term and short term health, but sadly that’s not always enough of a motivation for a teenager when the future seems like another lifetime. Although I wonder if it could be more than that, do you think he may have depression? If that is possible then motivating himself could be an even bigger battle. Could he be looking for help by getting regularly admitted?

19 can be a time of massive upheaval, finishing school, going to uni/work, it’s the start of a whole new life chapter which can be overwhelming enough on its own and diabetes just one more thing to have to think about.

Do you think he would be open to someone else doing his injections etc for a bit? I realise the issue isn’t that he cant do them but letting someone else deal with for a while might help him? One less thing for him to think about.