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My daughter wont take her insulin

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SD5390

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Good morning

I am seeking advice from any parents who also struggle with getting there child to take insulin. My daughter is 13 years old and was diagnosed with type 1 two years ago. She has had DKA twice in this time and taken in to hospital another two times due to her ketones being high. Every day is a battle with her to take her insulin. I count her carbs for home and school as she wont do it and will just guess the amount of insulin to take. She refuses to let myself or her dad at weekends watch her take her insulin as she will only do it on her legs and refuses to do it anywhere else and as shes 13 doesnt want to pull her trousers down in front of us to do it. I have tried everything to make it easier for her and have even gone to the measures to ser my alarm and test her during the night when shes asleep. She barely will engage with the diabetic team and wouldn't speak with a psychologist as she doesnt feel she needs this. Due to her recent visit to the hospital she has now a social worker involved but I cant see this making any difference. She tells them what they want to hear at the time and then when they go away the fight to get her to do it begins again. Iv tries trusting her like she has asked but this has been at it's worse as she still doesnt do it properly. I am so concerned for her health and as a mum I feel I am neglecting her but I just dont know what else I can do, it just doesnt seem to bother her at all. Has anyone else experienced this and is there anything more i can do to help her. Iv tried talking and explained to her I am scared she is going to become really unwell and doing it in a way where I am not nagging but again it just does not seem to sink in. She is in denial and thinks nothing will happen even though doctors and family have gone over and over with her the side affects and she been in hospital at the worse stages of DKA. I really dont know what else I can do, I never realised how hard this would be for her or us
 

Oh dear SD5390, your situation seems like a real nightmare.

Do you know why you daughter won't d her insulin? Does she do any of it; like her basal, but ess keen on the bolus mealtime injections, or is it all of it she won't do?

Do you think she might be doing this to manage her weight? Some folks find they lose a lot of weight prior to diagnosis, then when they start on insulin they regain that weight (becoming healthy again). Some folks find they "prefer themselves" skinnier, even though it was due to the very high blood sugars.

It's very hard to know what to suggest, except to try to listen to her and keep in touch with her team.

I hope someone will come along with some better ideas than me very soon, but I just didn't want you to feel ignored.
 


Hi @SD5390 ,

Welcome to the forum.

The teens?!! There's a fair bit of self consciousness going on at that age..
Family dynamics change when diagnosed, it almost seems to centre round the matriarch. (I had sisters who were embarasingly over protective at the time, too.)
As a kid? Some of these clinics, HCP & the overal "rehab" vibe, can leave you feeling,"I may as well have stolen a car."

There a differing thought processes happening & it's appreciated you need to be certain your daughter isn't omitting insulin.
However, for some. Injecting is a personal affair. It can take a while to "come out" with it..

When yer "the only D in the village," it takes some confidence building..

I appreciate the COVID thing right now. Is there a local child T1 group your daughter could talk to.? (Maybe online?)
Supervised, (online safety.) but video what's app chat room stuff with T1s her own age?
 
SD5390 said:
am so concerned for her health and as a mum I feel I am neglecting her but I just dont know what else I can
Click to expand...
I want to address this point: you are NOT neglecting her. You are a loving, concerned mother who is doing her utmost to get the help your daughter needs.

At 13 years if age, there are limits to how much influence you have over her behaviour and choices.

But you are not neglecting her. The fact that you ask yourself if you could do more means that you are not a neglectful parent.

My thoughts are with you. I have been, under different circumstances, in this situation with a child. It's hard.
 
I can just about remember my teen years. I totally rebelled with my T1D. My DSN at the time showed me a video of what can happen to you if you dont take your insulin. It was pretty horrific truth be told.....with foot ulcers, amputees etc. It bucked me up fairly quickly on taking my jabs. Maybe a short sharp shock to her system.....see if there are any horror stories on youtube you could show her? Won't be nice to watch BUT may kick her up the rear to get her going?
 
It must be heartbreaking for you. I'm not sure what insulins you are using, but could you ask your DN if a pre-mixed insulin once or twice a day be more manageable at this stage?
 

Gosh, this is a hard one. I really don't know how feasible this is but would she be able to go onto a pump of some sort? I know that pumps still require attention and proactivity but if your daughter is fed up with the faff of injections all day long and constant monitoring, then maybe something which (to some extent) does the job for you, might interest her? She might feel better at the thought of being able to feel 'normal' during the day? There seems to be so many more options than multiple daily injections and carb counting and checking? I don't know a lot about pumps, hopefully others will comment on the suitability for a 13 yr old but are you able to discuss options with your health care team? Perhaps you could discuss this with your daughter and maybe, (just maybe) she might get a little bit more interested? xxx
 
@SD5390

I can't offer any advise on meds but my daughter was similar in attitude to yours when she was about the same age - basically she was about to take a wrong turn in life. She wouldn't take advice from me, her dad or any other relative but she did have an excellent relationship with her English teacher. I contacted the teacher informally and she was very helpful.
 
It's gotta be said that I probably didn't take any advice very well when I was that age either, I think I'd only recently been moved from two injections a day to MDI (ie 4 a day) and I wasn't happy about having to inject anyways, let alone more than before, I pretty much refused to do blood tests unless forced - and I think on at least a few times came out with 'well I'm not doing a test unless he does too' (whilst pointing at my non-diabetic brother).
Its incredibly difficult to be the 'different' person when at school - and of course you get the 'why me', why do I have to do this when no-one else does, it hurts!.
I always did my injections but I very very very rarely did blood tests unless forced - don't have any Hb1Ac's from back then but I'm pretty sure they would not be good numbers - I do have my results from when I was 16 onwards and umm, yes, um, my A level years were the worst I have on record (HbA1c: 88-92).

Not sure I can offer advice but it is incredibly difficult to be a child/teen with T1, not sure how my parents ever managed, I must have made them panic and worry so much
 

I don't think a pump would be the right choice in this case. As she is basically making a stand against her diabetes having something attached to you 24/7 say "Hey I am diabetic" wont help. It is a lot more "faff" with carb counting and BG testing etc.
 

Hi porl69, Yes, I did sort of wonder. My thought was that if it was a matter of her not wanting to be reminded of diabetes then a pump (once set up etc) might be a better option than finger pricks, multiple injections and so on. What would you say the benefits of a pump were over MDI? x
 

Even after setting it up and getting all your basal/bolus settings worked you still need to be doing occasional basal testing and alterations on your pump.
Benefits = micro bolusing ie being able to give a tenth of a unit instead of a whole unit and being able to set up different basal rates throughout the day and seeing the effects of the changes pretty much straight away.
You really have to be pretty accurate with your carb counting and you have something attached to you 24/7
 
Firstly reading your post makes me realise what a cow I was to my own parents at the same age! I really knew how to press their buttons though not quite in this way (I faked hypos next to cliff edges). I was diagnosed at age 10 and didn't have enough time to adapt before puberty and secondary school hit; I suspect that there is something more than teenage rebellion going on and you are right to be concerned as diabulimia is a risk here if she gets into that mindset (enjoying getting skinny and being fearful of taking her jabs lest she puts weight back on).
I am sure lockdown hasn't helped either and this may just be her way of asserting control amidst all the angst of being a teen and wanting to be normal which at age 13 means NOT having this to deal with too.
I'd agree that a pump is not a magic bullet that lets you forget your diabetes however having seen a few documentaries about teens refusing insulin, it might take the element of choice about the background insulin being taken out of this young lady's hands so at least for the basal bit she is not being hassled by parents anxiously hovering as she injects. It also means with certain sets that she can bluetooth boluses to her pump via a handset that looks like a phone (Roche does this). She may not end up with perfect control but I've certainly found it easier to just get on with life in spite of the fact I have this thing attached to me and I don't think most people can see it (can be hidden in a sturdy sports crop top!). You will need a tier 3 (Diabetic consultant) to agree to it though. I would hope your social worker would push for those things on your behalf so that at least you have someone on your side whichever routes you might explore.
Having been through a bit of a crisis in my teens and twenties when future complications seem irrelevant, I do know that your daughter would be top of the list for getting some help either practically with a pump and flash glucose monitoring and /or psychologically but I'd investigate if her diabetes clinic has any specialist counsellors or a teen support group for this kind of thing. And yes I know that Covid makes all these things a lot harder.
https://www.bbc.co.uk/programmes/p05gh0lf - don't give your daughter any ideas if weight isn't an issue but this may help you find further resources
http://dwed.org.uk/
Again this is a charity aimed at Diabulimics. We do not know if this is her however I bet they might have some expertise or support for parents struggling with non insulin taking teens.

A word of optimism here too though I think loads of type 1 teens don't follow the rules either and of course the consequences can be horrendous but most make it through unscathed and emerge more mature and stronger than contemporaries who didn't get this curve ball! Have 3 teens myself now (no diabetics yet) so know how difficult they can be at times so my heart goes out to you.
 
 
Good morning, I hope you are well.
I was once that 13 year-old who didn’t want to take her insulin, having being hospitalised with DKA several times previously. For me, I just didn’t want to be diabetic anymore so refused to inject.
It may be worth sitting down and talking about the possible complications to your daughter? It was a wake up call for me.
Also, which I am sure you have possibly already done but just asking why she doesn’t take her insulin and explaining to her that it’s a journey you are on together and that she is not alone. Maybe a psychologist might be a route to go down too.
I am now on the pump (Omnipod, no wires and fairly discreet) and this has changed my life- taking my HBA1C from 9 to 6.8. This may be an option too as you can use the device to administer the insulin and therefore you are not ‘injecting’ as such. Also, the Freestyle libre has been amazing too.
I hope the above helps as I am purely speaking from my experience, having been that 13-year-old once upon a time. I think ‘diabetic burnout’ is the term for when you are fed up with it all. Being diabetic at 13 is tough especially when you see your friends as ‘normal’ eating whatever they want, when they want without having to inject.
I am not sure if it is comforting but the penny does drop at some point and you think, I want to live a healthy life so I need to get on top of this
With love, Haleema
 
Been there too. From a parent who came out the other side after a very battered 5 years of fighting (including Trying to watch every injection & testing and injecting my teen while they were asleep as I knew they had missed injections too & also ending up with social services on my back) you have to give her as much chance to feel she is in charge of her own body. You have to stop her feeling she is being ordered to do this & let her make her own mistakes but let her know you will always be there to pick up the prices. The faster she learns it is her own choice the faster she will stop Rebelling.

Freestyle libre works fantastically, a stern talk about having only 2 years before going blind Or getting kidney failure from the medical team helped.

Social services made it worse so just tell them you are coping, prioritise your own calm outwards appearance so she can’t rebel just to wind you & them up & remember she will suffer feeling high too so once pressure from those around is gone she will have only herself to blame if she gets ill, she will be saying it is because you are watching her that she is not injecting so doesn’t have to take responsibility as long as you are the responsible one. Allowing her to choose her own diet & injection doses are the only way she will feel in control herself. The faster she learns this the better. A Dafne or similar diabetic education course is good if possible.

Little things that make a difference are Buying very small portion controlled biscuits and low sugar treats like cream eclairs (less sugar than tomato ketchup!) or party sized frozen puddings that you can serve regularly to make her feel normal having sweet things help prioritise happiness & doesn’t make eating sugary things so much of a rebellion. You both need to learn to accept that perfection in glucose control doesn’t happen during puberty so just accept the best she can do and be grateful she is not in hospital more often. (My son’s record for DKA was 5 times in 5 months & blood sugars off the scale of the monitor in the hospital.... he is still alive & a healthy Very well controlled 25 year old, it didn’t improve til he stopped being nagged & controlled by all of us including the diabetic team & took on that responsibility himself.
 
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Hi
I am so sorry for your trouble,and for your daughter. It must have been a heck of a shock for an 11 year old girl to suddenly find she is a type 1 diabetic. It sounds like she is dealing with it by depression, as denial is part of that. For a start , if she'd read this whole page with you, and see how many caring people are here for her, it might help? Once she gets on top of this disease she will find it a lot easier. There are uplifting stories , like Dr Bernstein still going strong at 86.- he was diagnosed at age 12 and had to learn himself, with no help, how to tackle his type 1 . This was in the old days before there were blood sugar monitors and automatic finger prickers. Think how heroic that was. Or Dr Troy Stapleton , whom you can find on youtube, explaining how he used CGM to control his blood sugars with diet. She might find watching a youtube presentation helpful to motivate her, to jump her out of her apparent ' depression '? He has given several talks on this, but the talk given on 22. NOV. 2014, and published on youtube on 9.JAN. 2015, starts off with a quote from Frederick Banting, who describes how, before insulin, type 1 was a death sentence. Horrifying. That might make your daughter realise how lucky she is to live in this day and age. Search for "" Dr. Troy Stapleton - 'LCHF to manage Diabetes' " . He might be inspiring for her . I am no expert on 13 year old girls, but the suggestion on this page to find her a peer group is excellent. Starting with these pages. If your Dr is not expert on this, find a new one? Your Dr should be able to understand what is going on, and if necessary refer her to a specialist therapist who understands diabetes, young people , and the mental problems.And how to proceed- pushing or gentle persuasion . Hint : Dr Bernstein and Dr Troy have both found it much easier to handle blood sugars by going low carb. I have not read Dr Bernstein's book , [ I'm a type 2 ] but I have heard reports that it has been a Godsend for parents with diabetic children. oops sorry, 13 is no longer a child, ha ha ! Let's say a great help for parents with diabetic offspring ! You might warn the young lady that injecting in the same place all the time can cause fat tumours. She must learn to vary the injection site. Good Luck .
 
Even without Diabetes - daughters can be notoriously difficult to understand or deal with at this age until about 19 years of age. You have the whole Forum's sympathy for your plight - I am certain. Please SCREENSHOT and print this letter you have sent to us because, in the very near future, you may well need it to prove how much you care for your daughter for the Authorities who can often take sides when, in fact, it is nobody's fault. I lost all of my children and wife to illness so I do speak from experience.
 
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