Worried sick

[April_K]

Hi,
I've joined to see if I can maybe get some help with my just turned 17 year old daughter, we are in real trouble here
My daughter was diagnosed with T1D at 14 after having lots of time off school and me being told there was nothing wrong with her, it just so happened one day I was at my Dad house and he ( I just lost my lovely dad far to young just weeks ago ) was diabetic and he recognised symptoms and he tested her blood which was 27.2
I took her into A&E and that's when and how she was diagnosed.
At first she seemed to accept it all quite well and was injecting herself and carb counting in no time, everybody was very pleased and surprised how well she coped.
How things have changed..
I now have a just turned 17 year old daughter that has lost over 8 stone in weight, refuses to go to any appointments at all, refuses to speak to the diabetic team, they have tried everything, going into college she refuses to see them, she will not pick up if they call her, she ignores texts and emails from them all, She is not injecting as she should be and never tests her blood at all, she has been admitted to hospital 3 time in the last year and really I think has come very close to a lot more than that. I am disabled myself and I do not drive and I have no way of making my daughter go to any appointments and she refuses to come with me by taxi or if I arrange for family to take us, she just leaves the house, if the diabetic nurses come to the house she walks out. So she is refusing anything to do with doctors, hospitals or any mention of diabeties, if I try to ask her about any of it she either flies into a rage, cries and cries and won't speak to me or just walks out, I've tried everything to try and get through to her and so have all family members, she also has cut up her arms a few times saying she can't stand them all keep trying to ruin her life.
I'm at my wits end, her father ( ex husband ) is so busy shouting at me for moving 20 miles up the road two years ago and trying to blame me saying I'm not strict enough that he is no help at all because my daughter blames him for a lot of how depressed and down she feels. She has never forgiven him for walking out on us with another woman even though that's 10 years ago.
I've begged at the hospital one time for them to keep her in longer and make her inject, or to help, to do something because I can't make her do any of it, they just said neither could they and discharged her, So now after this last admitting which I still do not believe she should have been discharged from, she still looks I'll and even though they changed her insuline to one she doesn't have to inject so often, I can see by looking at her that she isn't using it properly, the diabetic team have involved social services, I am actually relieved, I already lost one child to cot death and I am so terrified I am going to find my daughter that way also, I am actually scared for her life, she is now stick thin and pale looking, has pains in her chest a lot and real bad pains in her legs, I relieved that I just had a call from a social worker, I pray that they can help me, I don't know how they will make a 17 year old do as they say anymore than I or the rest of the family can, but I just pray they have a way, I love my daughter, I am scared I am going to loose her and I try but I do not understand why she is behaving this way, she understands exactly what she is doing to herself and I've tried to tell her what this is doing to me, although apparently she thinks I'm not supposed to say that because it's not about me! I'm her mother and I love her and I want her to go on to live a long happy life and so I am letting social services into our life's , I never in my life thought I'd ever have to do something like that, but it's my daughters life I have to think about.
Anybody here have any advice at all?
Anybody having the same kind of problems?
If you got this far, thank you for reading.
April X

 

[himtoo]

Hi there April !
your family is having a really tough time right now !

I would recommend getting in touch with DWED ( Diabetics with Eating Disorders )
your daughter's symptoms do sound very similar

here is a link http://dwed.org.uk/

is there any way your daughter might join here ??

it does sound like she is very much in denial and dealing with a lot of pressure at college as well.
her reactions are not totally uncommon but she does need some help.

 

[Diakat]

I second what @himtoo says.

You both need help and support somehow as it sounds awful. Your daughter needs to act for herself, she is the only person that can decide to inject and manage her diabetes.

Hug.

 

[Peppergirl]

I was diagnosed at 14 with type 1 and internalised my depression/anxiety which is just as bad. At least you know how troubled your daughter is and are trying to help which is all you can do. It's so difficult at her age, I don't feel I really was allowed to be a child tbh. If you can arrange counselling it will help, someone to offer practical coping techniques. Agree with the comment about possible eating disorder. All you can do is keep trying. I wish you both the best.


Post edited by a Mod to remove reference to edited content

 

[shelleyh]

Hi April
I am sorry thing are so tough for you both. Has your daughter seen the clinical psychologist linked to the Diabetic Team? They can help with young people coming to terms with the condition. I would also request that Social Services refer her to Child Adolescent Mental Health (CAMH) to support her emotional difficulties.
I hope things get better for you, there is help out there.

 

[catapillar]

Can you talk to your daughters diabetic team about psychiatric support? I appreciate that it seems unlikely she would attend any appointments for a psychiatric review but a type 1 diabetic cutting herself off from medical support and not taking insulin is a significant self harm. I'm assuming the hospital admissions have been dka - presumably from delibarately ommitting insulin, it could be viewed as tantamount to a suicide attempt. And a suicide attempt is something that can be responded to with a section - inpatient admission in a psychiatric hospital aimed at resolving the self destructive behaviour.

Obviously whether a section would be appropriate in your daughters case would be something for a psychiatrist to consider. But it should be a psychiatrist who understands what type 1 is and what diabulimia is. A paediatric diabetes team should have access to an appropriate psychiatrist.

 

[Mark_1]

I'd write he a letter using what you have written above as a guide. Explain how worried you are, ask her what you can do to help and leave her alone to read it. That way you can say exactly what you want and hopefully get through to her without a risk of it turning into an argument.

 

[Snapsy]

@April_K I'm so sorry to read this. Sending strength to you and to your daughter.

It's an incredibly complicated situation, with your daughter at serious risk of harm. I would second @catapillar 's recommendation to get psychiatry involved, and would recommend the same.

I was sectioned due to a psychiatric issue that was a direct result of a medical situation (not my diabetes) having become extreme, and with hindsight I am grateful every day for the actions that were taken on my behalf, and for the fact that I am still here.

Love Snapsy

 

[noblehead]

*Edited by a moderator to remove reference to a deleted post.

I agree with @himtoo , contact the good people at DWED and also ask her hospital diabetes team to intervene, your daughter needs help and support @April_K not scare tactics.

 

[AndBreathe]

I'm going to tag @asortafairytale and @lexxfromdwed to see if they're around at all. They may have some helpful ideas for you and your daughter, @April_K .

I do hope you find a positive way forward for you both. I'm sure it's a dreadful time for you both.

 

[Juicyj]

Hello @April_K I really feel for you, I have a friend who's daughter behaves in a similar way to your daughter so I can understand the anxiety you must be feeling.

It really is support she needs, 17 is a tender age and she could be incredibly sensitive, using her diabetes in a way to control her emotions, can you have a sit down 'heart to heart' with her, no distractions but to talk through this, explain your fears and try and understand why she is behaving like this. Ultimately you both will need some support in getting through this bad patch, whether it's a psychiatric help such as cognitive behavioural therapy, but getting her to open up and let you know why she's refusing help is a starting point. No one is to blame though so try not to feel at fault here, you are a wonderful mum for caring so much about her, you can get through this so please know that with the right support you will be ok. Lots of help and support here so if she does want to chat to another type 1 I am happy to help

 

[April_K]

I was diagnosed at 14 with type 1 and internalised my depression/anxiety which is just as bad. At least you know how troubled your daughter is and are trying to help which is all you can do. It's so difficult at her age, I don't feel I really was allowed to be a child tbh. If you can arrange counselling it will help, someone to offer practical coping techniques. Agree with the comment about possible eating disorder. All you can do is keep trying. I wish you both the best.


Post edited by a Mod to remove reference to edited content

Hi, Thank you for your reply,
I've had 3 councillors & a phyco therapist involved, they have even come to our house and they end up sitting and talking to me because she just goes out, the others, well she just refuses to go see them and once again, nobody seems to be able to make her xxx

 

[April_K]

Thank you all for your replies, I'm having some trouble getting the posts to work for me, they keep refusing when I've tried to reply to you all individually.
Yes we had 3 different councillors & we have a phyco therepist who is lovely, but when she has come to the house my daughter just goes out.
I've tried what was CAMBS now changed name, we went, I got her to two sessions and then she refused to go.
Her GP won't speak to me about any of it at all because she is over 16, they are 10 mins walk from us, even if she only attended there the diabetic nurse has offered to arrange that, but she says she is off out to her appointment and just doesn't bother going.
She tries to blackmail me into giving her money, acting all sweetness n light, telling me she needs to eat while she is out going to her appointments, I've given her money so many times I lost count and fell for it every time.
Also, she doesn't stop eating, she eats all sorts, no diet plan at all and she eats enough for 3 people, I have whole packs of things go missing from the cupboards, she is always eating. Yet she is still dropping weight and there is nothing left of her it looks so awful under her clothes, her legs are as thin as arms should be, but all she does when home is eat one thing after another, so she must be using the insulin to stay this thin?
So I have involved all the people you have all suggested & she has refused them all. This is why I agreed to allow social services to step in, I really have tried it all.
Right now I can just about make it from my bed to the bathroom with my crutches and with help from my husband, the pain is near unbearable , morphin isn't even helping.
I'm in what the doctors like to call " a flare " and my back, the discs are bulging and it traps the nerves in my back which affects my pelvis also, that along with fibromyalgia and the few other medical conditions I have myself makes everything a whole lot harder and even as I'm typing this my daughter is trying to blackmail me into giving her money to buy food ( as in rubbish ) because she says she doesn't feels well and needs sugar and I've no cakes or alike in the house. I can't go cook a meal I can't walk right now, but she is not only a very good cook but even just got herself a little summer job cooking in a cafe, so quite capable of making herself some real food.
Thank you all very much for you replies and input, it really is much appreciated.
April x

 

[April_K]

I read that back to myself and it reads like I'm making excuses, I really am not, I have tried everything possible and I am really scared for her.
It doesn't help that her attitude has changed so much and all respect seems to of gone out the window, some may say typical 17 year old but she is now ( because I lost my son ) one of four and I've had no problem with the others and my other daughter has hyperthyroidism, she has always taken her meds as she should.
In two year we have lost my mum ( far to young from the big C ) my 10 year old cousin, my Favorite uncle and now we just lost my Dad, he & my mum was so in love he couldn't live without her, he pretty much did die from a broken heart and he was to young also, so we have all been through a lot. My parents fostered over 300 troubled girls, I just lost them and they would have been the ones to know what to do about my daughter, they would of helped me find a way, my Dad was trying but he had become so poorly himself he was loosing his grip on my daughter, I mean grip as in she did listen to him at least.
Sorry for the long rambles, it's just so scary, I'm so scared that I'm going to loose her and only here do people understand me that that is a real possibility , I swear others ( not family ) think I'm just a over baring mother or something, but this is real isn't it? I really could loose her if this carries on?
Thank you all once again xx

 

[catapillar]

Also, she doesn't stop eating, she eats all sorts, no diet plan at all and she eats enough for 3 people, I have whole packs of things go missing from the cupboards, she is always eating. Yet she is still dropping weight and there is nothing left of her it looks so awful under her clothes, her legs are as thin as arms should be, but all she does when home is eat one thing after another, so she must be using the insulin to stay this thin?

Well no, she must be NOT using the insulin to be eating so much and losing weight. Without insulin your body can't get energy into the cells, your body basically thinks your starving even when you are eating like it's going out of fashion (increased appetite is a symptom of high blood sugar because your body isn't able to get energy from what you are eating, so it sends you messages to say eat something) so your body starts burning through your fat and eventually in will burn through muscle and other tissues.

And yes, realistically you could lose her if she continues with omitting insulin. When the body doesn't have insulin and starts breaking down fat that releases ketones, this turns the blood acidic. That's diabetic ketoacidosis and it is potentially fatal.

So your daughter wants money? Can you use this to bribe her to test blood sugar, to test for ketones?

Or your daughter wants rubbish food? Great, get a takeaway - Offer a McDonald's or whatever if she tests blood sugar and you see her bolus for it.

I mean bribery is probably not going to be psychologically endorsed as any kind of solution. But if all other options are exhausted if it opens the door to your daughter considering the position she is putting herself in it might be worth a try.

Does your daughter understand what your bereavement means for you? At 17 I would doubt it but she may be empathetic enough to have a discussion about it and that may lead the way to a discussion about how worried you are for her. Does she understand the risk she is at? Were the previous hospital admissions for DKA? Did she get advice on how serious that is?

 

[Scott-C]

so she must be using the insulin to stay this thin?

No, it's the exact opposite: without insulin, anything she eats will not be used as energy, insulin is a key which unlocks cells to let glucose in. Without insulin, the glucose can't get in to the cells to be used, so the body starts eating itself, breaking down protein and fat, hence, she's skinny. Imagine a car with a full petrol tank, but a blockage in the fuel lines: full of fuel but none of it gets to the engine. Insulin unblocks the fuel lines.

It's a huge messy problem you've got there and I don't pretend to have an answer, but here's a few random thoughts.

Teenagers want control, to be the cool kid. T1 is the opposite of that: it's a messy unpredictable condition which still throws a wobbly even when you're playing by the rules. It's no surprise that a lot of us rebel and ignore it. A lot of us, though, grow out of it, take stock, and start taking it seriously. Maybe just getting older will sort it.

I'm going to take the liberty of tagging in @paulliljeros , hope you don't mind, Paul, the OP's daughter is misbehaving. Paul has written some moving and eloquent posts about rebelling in his youth, suffering the consequences, and then patching it up later. He might have some tips on how to give kiddo a metaphorical clip round the ear. Your daughter might be more inclined to listen to someone who's been there, done that, to drive home just how serious this sh*t is.

If you can get her to go on a DAFNE course, do that. It's a week long intensive training course, usually with six or so T1s, a dietician and DSN. I went on one last year. There was a kid who had the same attitude as your daughter, running at 20 to 25 most of the time, cruising for complications, said she only came because her mum made her. By the end of the week, she was switched on, was talking about getting a libre. It was a complete turn around. Part of it, I think, was just sitting around with other T1s, some of us much older, and just knowing we're all in the same boat and listening to the little tips and tricks we use.

Don't know how you're placed financially, won't ask, but if you can afford £100 per month, I suggest getting a Freestyle Libre. It's a small plastic disc with a short sensor about 5mm long inserted (painlessly) into the arm. BG tests are little snapshots, so there's still lots of guessing going on, which is anathema to a teenager wanting to be in control.Whereas, the libre shows a continuous graph showing where you've been over the last 8 hours each time you scan, and gives clues as to where you're going. Most you'l lnormally get out of me is, aye, it's no bad, but I've found it life changing (I'm not employed by the makers, honest!). Teens like their phone apps - you can read it with an app. How cool is that, wave your phone at your arm and see your blood sugar. Sure,she's being stand-offish, but if you fork out for a single sensor, £50 (needs an android phone with NFC) or the starter kit of a reader and two sensors, about £137,, shove it in front of her, tell her, look I bought this for you, curiosity will get the better of her. Some say the libre is only useful for people who are already engaged, but there's a lot of posters on this site who've been in the same sort of place as your daughter who have become engaged by using it. Some hospitals give out free trial runs of one sensor and you get to keep the reader.

How about a role model? Both of the bloggers in the links below have posts about getting a serious wake up call from retinopathy and turning it around. Tge message often comes across better from another T of roughly the same age group.

http://ninjabetic1.blogspot.co.uk/p/home.html?m=1

missjengrieves.com

And there's us lot too! You'd be surprised by the number of people who come on here feeling a bit beat up, and lots of people then pitch in with tips and tricks. Trouble shared, trouble halved and all that...

Best of luck.

 

[Enclave]

Some times rebellion comes from the feeling of not being allowed to control ones own destiny. Your daughter must feel that just about everyone is on her back .. We understand this is for her own good .. but in her eyes she could be seeing it as everyone pushing her to do things she is not willing to do. I understand how your feeling, but it must be putting a huge strain on your daughter. There is a saying .. if you love them you must let them go.. You are in a loop with your pushing and your daughter pushing back ..
Could I ask you to sit down and talk to your daughter .. talk to her about what she hopes for the future, where she wants to be in five years time .. Ask her if she is having any problems you can help with .. in fact talk to her about anything other than her diabetes .. If she wants to talk about how she is managing her diabetes thats good .. if not then leave the subject alone.
This is her diabetes .. she has access to help when she decides she needs it. Hopefully if she is allowed to find her own way of managing her diabetes she will turn things around herself. But she will need you for support not control ..
If you feel your daughter is needing to be sectioned for mental health problems, self harming by not controlling her diabetes, then thats your call.

 

[NaomiJC]

Even though April is of course worried sick she needs to back off!

Her daughter has been diabetic for 3 years and I'm assuming knows what is what in terms of her diabetes. Maybe having been such a 'good' diabetic she is going through a phase of realising it's for life.

Maybe something else is going on with April's daughter. Or it could be burnout. Whatever the case, trying to appeal to a teen to take care of herself for someone elses sake won't make her feel any better about herself!

So let her make her own frigging choices, whether they lead to hospital or not - regardless of how painful that is for the mother.

I realise I must sound like a bi*ch but I was the rebellious t1 teen. I ate sweets all day every day (I'm an emotional eater.) I barely tested my bloods unless I felt ill That was my choice.

The pressure of all the different health care professionals as well as emotional pressure WON'T help.

I got myself new doctors when I went to Uni. Met someone else on my course with diabetes and started to make changes for the better.

Whatever the daughter is going through she has to realise that all this self destructive behaviour is going to catch up with her. The most important point for her is that she has to keep injecting. The best way to achieve this may be to find a way for her to realise that she has a bright future.

 

[Frannyk]

Hi,

Sorry you're going through this. I'm a teacher and a type one diabetic. I was diagnosed aged 8 so have a fair bit of experience of teens. I think you're key is thinking who influences your daughter in general. Is it a specific teacher, a friend or someone else? Whoever it is, I suggest you get in contact with them and explain to them what you'd like them to say. Ensure that they explain the reasons why she needs to do certain things. This is really important. This phase will end; things will change. You're doing great by loving her and caring for her. However, it is hard- don't give up! X

 

[maggiedog]

Hi,
I've joined to see if I can maybe get some help with my just turned 17 year old daughter, we are in real trouble here
My daughter was diagnosed with T1D at 14 after having lots of time off school and me being told there was nothing wrong with her, it just so happened one day I was at my Dad house and he ( I just lost my lovely dad far to young just weeks ago ) was diabetic and he recognised symptoms and he tested her blood which was 27.2
I took her into A&E and that's when and how she was diagnosed.
At first she seemed to accept it all quite well and was injecting herself and carb counting in no time, everybody was very pleased and surprised how well she coped.
How things have changed..
I now have a just turned 17 year old daughter that has lost over 8 stone in weight, refuses to go to any appointments at all, refuses to speak to the diabetic team, they have tried everything, going into college she refuses to see them, she will not pick up if they call her, she ignores texts and emails from them all, She is not injecting as she should be and never tests her blood at all, she has been admitted to hospital 3 time in the last year and really I think has come very close to a lot more than that. I am disabled myself and I do not drive and I have no way of making my daughter go to any appointments and she refuses to come with me by taxi or if I arrange for family to take us, she just leaves the house, if the diabetic nurses come to the house she walks out. So she is refusing anything to do with doctors, hospitals or any mention of diabeties, if I try to ask her about any of it she either flies into a rage, cries and cries and won't speak to me or just walks out, I've tried everything to try and get through to her and so have all family members, she also has cut up her arms a few times saying she can't stand them all keep trying to ruin her life.
I'm at my wits end, her father ( ex husband ) is so busy shouting at me for moving 20 miles up the road two years ago and trying to blame me saying I'm not strict enough that he is no help at all because my daughter blames him for a lot of how depressed and down she feels. She has never forgiven him for walking out on us with another woman even though that's 10 years ago.
I've begged at the hospital one time for them to keep her in longer and make her inject, or to help, to do something because I can't make her do any of it, they just said neither could they and discharged her, So now after this last admitting which I still do not believe she should have been discharged from, she still looks I'll and even though they changed her insuline to one she doesn't have to inject so often, I can see by looking at her that she isn't using it properly, the diabetic team have involved social services, I am actually relieved, I already lost one child to cot death and I am so terrified I am going to find my daughter that way also, I am actually scared for her life, she is now stick thin and pale looking, has pains in her chest a lot and real bad pains in her legs, I relieved that I just had a call from a social worker, I pray that they can help me, I don't know how they will make a 17 year old do as they say anymore than I or the rest of the family can, but I just pray they have a way, I love my daughter, I am scared I am going to loose her and I try but I do not understand why she is behaving this way, she understands exactly what she is doing to herself and I've tried to tell her what this is doing to me, although apparently she thinks I'm not supposed to say that because it's not about me! I'm her mother and I love her and I want her to go on to live a long happy life and so I am letting social services into our life's , I never in my life thought I'd ever have to do something like that, but it's my daughters life I have to think about.
Anybody here have any advice at all?
Anybody having the same kind of problems?
If you got this far, thank you for reading.
April X

I was so sad reading this letter. Lots of people have replied and given you good advice.i just want you to know I am thinking about you and hope you get the help for your daughter. Tell your GP exactly how you are feeling and what is happening, when I was diagnosed I was truly in despair and felt so lonely. Mark's idea of a letter is really good but in a severe state of depression I think it so important to get professional help as well.