Teenager refuses insulin

[MrsJordy]

Hi, my son is 16 and has been diagnosed 3 years. He is struggling to accept his T1D diagnosis, I guess he wants to be ‘normal’ again. He is constantly running high because he doesn’t inject. A few weeks ago he let me do the diabetes management and his levels were mainly within range but now he refuses to let me help. He is home schooled due to bullying and his GCSE’s are in 4 weeks time. He sporadically sees a psychologist linked to his team but I don’t think this is often enough. He doesn’t think he has a mental health problem but his team and I think he does. I don’t know who to turn to for help.

 

[Zhnyaka]

Is it possible to supply your child with a closed-loop pump? It is quite expensive, but unlike injections, he will not be able not to inject insulin.
How much have you come to terms with his diagnosis yourself? Do you forbid him something because of diabetes? Can he do his hobbies? I suppose you are very concerned about what is happening and are constantly trying to take care of him, and he perceives it as overprotective.
My parents practically didn't pay attention to my diabetes when I was a teenager, and to be honest, I was happy about it. Of course, I do not recommend you to do the same, because diabetes is a dangerous disease, but try to treat your son as an adult, and not as a child who does not understand anything.
Just don't scare him with complications from diabetes, it's better to say something like "if you control your bg well, you can do whatever you want and your life will not differ from the life of your peers"

 

[EllieM]

Does your son have a libre or dexcom so you can monitor his levels?

Look, my teens were pre glucometer and though I never skipped an injection I ate far too many carbs for my insulin and felt very very ill on occasion (luckily I got away with it, still have working eyes, limbs and kidneys now).

An obvious question is whether he is stressed out about the upcoming exams?

Diabulimia is a thing for many teenage T1s. hopefully not for your son.

All I can say is that being a teenager is hard. Things will probably be easier when he is older.

I'm not familiar with the current availability of help via the NHS but just wanted to give you some moral support from someone who has survived appalling teenage T1 control.

Edited to add : I'm not saying that you shouldn't be concerned about the current situation. Please get all the help you can.

 

[himtoo]

Hi @MrsJordy ..firstly welcome to the forum.. I am so sorry to hear that your son is struggling so much with his diagnosis. If you are in the UK i believe that your son will be seen by the Paediatric team at hospital. I think it would be worthwhile you writing or emailing his specialist diabetic nurse and asking for her support, and for any suggestions for what you can do to help.
. it is important to do this now as over the next couple of years he will transition to adult services and the support there is not normally as comprehensive. It might be of some help if he were to get a pump as that might help in tems of less injections and basal insulin is delivered automatically

also -- does your son talk to anybody around his own age that has type 1 diabetes...often peer support such as this can help not to feel so alone.
i can put him in touch with some younger people if he would be interested. ( send me a direct message and i will be happy to help )

 

[MrsJordy]

Hi Thanks everyone.
My son has a dexcom so I know his levels are very high and he is waiting for a pump.

His diabetic team have been helpful to a point but I think they feel they cannot do anymore than they are already. My son doesn’t want to engage with anyone who is diabetic.

We try and encourage him to do the things he loves but his main interest is bike riding which he doesn’t have the energy for anymore. He knows the answer is managing his bg. He claims he’s doing it but clearly isn’t, he lies about everything. He has been tested for insulin resistance and he isn’t resistant.

I know I need to keep him safe but I have no idea how I do that. He doesn’t seem to care about anything anymore. Yesterday he said he would rather live for 1 more year, do no insulin, enjoy the year and then die. It’s heart breaking. I hate to think of the damage he is doing to himself.

I have thought about psychiatric help but I don’t know if there is a psychiatrist who specialises in diabetes. Does anyone know one?

 

[HSSS]

Road cycling? Does he know about team Novo Nordisk? All type 1. https://www.diabetes.co.uk/celebrities/team-type1-cycling-team.html talks about other cyclists and sports people with type 1. Maybe knowing it’s possible to excel at the things he loves might be some small motivation and help him see a future given to him by insulin (ie a gift not a burden)

I’m not type 1 nor ever dealt with a teen with such and don’t pretend to understand these specific challenges. But I have so far survived 3 male teens of my own, and some challenges with depression both mine and one of theirs. Can you or he identify what it is about insulin use that he rejects? I’d assume without knowing that it’s very hard to address.

Can you put a rocket up his team about the urgency of trialling a pump? Sadly those that make the most noise get the fastest treatment. Patiently waiting rarely helps move a person up the list.

 

[wozey]

When I was his age I thought I knew it all (I think we all did) I think wanting to be “normal” is normal, we all want to fit in and be like everyone else but not going to school isn’t normal and that could be playing a part maybe? I don’t have the answers but at that age it’s usually always very difficult. Hope he does well in his exams, I’m confident this will sort itself out but try to make the exams the seem to him like that’s your main concern maybe

 

[Jaylee]

Hi @MrsJordy ,

Welcome to the forum. High BGs can put one on a negative mood. Coupled with being a hormonal teen?
I remember those days. There was some dark creative thinking. (Music.)

Nah, back then I had no wish to engage with other Ds. It was bad enough at the clinic sat waiting. I didn’t make any form of eye contact. (They were all pretty much “shoe gazing.”)

From the sounds of what you say regarding “enjoying a year of normality without insulin.”
“Normality” is a personal experience. My norm, the previous posters may not understand.

Would your son be willing to first try a year of his “normality” using insulin?

With best wishes, hopefully he can continue for a number of contented years..

 

[In Response]

Is he aware that a year not taking insulin is going to be a very unpleasant year. High blood sugar’s don’t make you feel good. And when the complications start that can be really nasty.
I understand it is difficult to get this across to a teenager (or a person of any age who is struggling with their diabetes), but maybe a teenage boy may think twice if he realises ED is a strong likelihood if he does not take his insulin.
As I am not a parent, I cannot provide any advice on how to explain this to him and feel it would be disingenuous to try.
I hope you can get the message across and send you hugs.

 

[Zhnyaka]

The problem is that giving up insulin at t1 is a slow and painful death, so it will be impossible to "enjoy" a year without insulin. To be honest, I'm not at all sure that a year without insulin is possible at all, usually it's a few months at best. But teenagers from well-off families rarely seriously think about suicide, at this age they often want to attract attention to themselves and can make a fatal mistake.

The crisis of adolescence is usually associated with the fact that a person realizes that not everyone around him will love him and very few people will love him simply for the fact that he exists. Diabetes is generally a great way of manipulation, so if you let a child not do something (homework, help for parents, etc.) because he has diabetes, he starts using it very quickly. This does not mean that hyperglycemia makes us feel good, but we can use it as an excuse for anything. If I didn't want to go to school as a child, I could just eat a few sweets and in the morning my bg was so high that my parents wouldn't let me go to school, but when they stopped letting me skip classes because of hyperglycemia, I stopped doing that. I understand that you are very scared for your son, but as soon as you let your fear take over, you will turn into a toy in the hands of your child. I don't know if it's help, but try not to give him positive reinforcement for his destructive behavior (a la to pay more attention and love when he feels bad) and tell him that you will love him no matter what state he is in and what he does.

At the age of 16, it is difficult to realize what death is and how much your death hurts your loved ones, but the fact that your parents are worried about you, your strength and the ability to manipulate them with the help of the disease is a pleasure. I remember we drank alcohol at that age and did a lot of dangerous things, because it seemed to us an important part of socialization. If possible, try to have your son surrounded by people with the least destructive tendencies. If his peers offend him, invite him to enroll in martial arts - the realization that you can fight back against those who offend you gives a lot, besides, it's a great outlet for aggression.

 

[Hopeful34]

Hi @MrsJordy

I'd ask the hospital diabetes clinic if they know of a psychiatrist who specialises in diabetes, or maybe ring diabetes uk's helpline 0345 123 2399 who may be able to help. I hope you can get help that your son will accept and find useful, as it must be so worrying for you.

 

[Abigail37]

Hi, my son is 16 and has been diagnosed 3 years. He is struggling to accept his T1D diagnosis, I guess he wants to be ‘normal’ again. He is constantly running high because he doesn’t inject. A few weeks ago he let me do the diabetes management and his levels were mainly within range but now he refuses to let me help. He is home schooled due to bullying and his GCSE’s are in 4 weeks time. He sporadically sees a psychologist linked to his team but I don’t think this is often enough. He doesn’t think he has a mental health problem but his team and I think he does. I don’t know who to turn to for help.

Hi there My name is Abigail and I'm also 16. I was diagnosed when I was 3 years old, I still struggle with diabetes and accepting it still seems difficult at times. At times I feel like I want to be normal again but I realize that this is my new normal and to make things easier I do sports and find things to make my diabetes more fun or exciting. Your son may need time to adjust and sometimes that takes quite awhile. If your son ever wants someone to talk to about things, let him know that there are people out there who will talk to him. If he wants someone his age to talk with, I'm here along with many others. Just give things time, don't push things on him too much but be consistent with helping I feel that when a parent helps it takes that much more stress off of it. Good luck and I hope this helps a bit.

 

[emmakx]

Hi there My name is Abigail and I'm also 16. I was diagnosed when I was 3 years old, I still struggle with diabetes and accepting it still seems difficult at times. At times I feel like I want to be normal again but I realize that this is my new normal and to make things easier I do sports and find things to make my diabetes more fun or exciting. Your son may need time to adjust and sometimes that takes quite awhile. If your son ever wants someone to talk to about things, let him know that there are people out there who will talk to him. If he wants someone his age to talk with, I'm here along with many others. Just give things time, don't push things on him too much but be consistent with helping I feel that when a parent helps it takes that much more stress off of it. Good luck and I hope this helps a bit.

how did you start to accept it, I've had it since 2021 and I think I'm still in denial about it, I hardly ever take my insulin. its just too much but I want to get better but I just can't and I don't know what to do

 

[lessci]

how did you start to accept it, I've had it since 2021 and I think I'm still in denial about it, I hardly ever take my insulin. its just too much but I want to get better but I just can't and I don't know what to do

I'm not a type 1, but I treat my type 2 a bit like an addict in recovery - 1 day at a time, today I stayed "sober" took my meds correctly & stuck to my diet. Tomorrow I will attempt to do the same. If I do "fall off the wagon" instead of saying blow it and over indulging for weeks I try to get straight back on. They good periods are slowly getting longer

 

[emmakx]

I'm not a type 1, but I treat my type 2 a bit like an addict in recovery - 1 day at a time, today I stayed "sober" took my meds correctly & stuck to my diet. Tomorrow I will attempt to do the same. If I do "fall off the wagon" instead of saying blow it and over indulging for weeks I try to get straight back on. They good periods are slowly getting longer

thank you ill try to think positively but it's just a lot sometimes

 

[lessci]

thank you ill try to think positively but it's just a lot sometimes

I try and take inspiration from my type 1 Uncle who was diagnosed at 14 in the 1960's and is still (relatively) fit & healthy in his 70's

 

[Jaylee]

how did you start to accept it, I've had it since 2021 and I think I'm still in denial about it, I hardly ever take my insulin. its just too much but I want to get better but I just can't and I don't know what to do

Hi,

Welcome to the forum.

I would also vote for the “one day at a time” stratagem..

What insulins are you prescribed?
If you are on a “basal bolus regime,” (or MDI.) are you taking the long acting?

 

[emmakx]

Hi,

Welcome to the forum.

I would also vote for the “one day at a time” stratagem..

What insulins are you prescribed?
If you are on a “basal bolus regime,” (or MDI.) are you taking the long acting?

i take

Hi,

Welcome to the forum.

I would also vote for the “one day at a time” stratagem..

What insulins are you prescribed?
If you are on a “basal bolus regime,” (or MDI.) are you taking the long acting?

i am prescribed novorapid for my food one then my long acting one is tresiba i think that’s how you spell it, but it’s hard to do both so atm im just taking my long one but even that one’s hard to do too

 

[Hopeful34]

thank you ill try to think positively but it's just a lot sometimes

Hello @emmakx

Welcome to the forum. There are a lot of things to remember and get used to when you're diagnosed. Have you told your hospital team how you feel, and are they supporting you? Some hospitals have a clinical psychologist attached to the diabetes department, so that may be worth exploring.

 

[EllieM]

i am prescribed novorapid for my food one then my long acting one is tresiba i think that’s how you spell it, but it’s hard to do both so atm im just taking my long one but even that one’s hard to do too

Hi @emmakx and welcome to the forums.

I agree that diabetes can seem overwhelming at times, particularly if combined with being a teenager, which can be overwhelming on its own without adding diabetes to the mix. (The good news is, you may be stuck with diabetes, but being a teenager doesn't last forever. I found things much easier once I was older.)

But unfortunately skipping insulin is likely to make you feel very ill, as I'm sure you know, and this doesn't help your mental state at all. I second @Hopeful34 's question about talking to your hospital team. They should be very familiar with diabetic teenagers who are finding it difficult to cope and (hopefully) provide you some help. Is there a particular reason why you can't bring yourself to inject? Would you feel more comfortable about it if you had an insulin pump? (I have no idea what the waiting list is like in your area but as an under 18 you may be eligible for the new technology.)

Once more welcome. Sending you virtual hugs from New Zealand.