Troubles with 13 yr diabetic

[Karmamel]

Hi all i haven't chatted on here for a while as up until yesterday I was under the impression that my daughter Megan's diabetes was well controlled . Meg had her routine hospital appointment yesterday , before had she had usual obs carried out including Hbc level. As we enter her doctors office i see a look of dismay on her doctors face and the other two nurses present. We were then told that her level has shot up again. I puzzled asked how this could be possible as Megan's blood readings have been fantastic lately . So they ask for Megan's recording book have a look through ( most of these results they know as I email them through once a fortnight ) then they ask for Megan's monitor . The nurse looks through and tells me the monitor readings aren't the same as what meg has wrote in book . I'm still puzzled and looking at my daughter thinking any minute they will tell me this is a terrible mistake . However they don't tell me there is a mistake Megan has infact been falsifying her readings for the last two months. On closer inspection of her meter once we got home i could see that Megan at times doesn't check her bloods at all other days its once or twice a day all readings are high between 22 and off the scale . Although meg has had a touchy start to her diabetes i honestly thought she has cracked it. Day after day she tells me her readings and I presumingly see her checking her bloods and taking her insulin before meals as I am in the same room as her whilst she is doing so. She must of however mastered the art of miming doing this.

Now is this normal for her age group ? I am racked with worry and guilt that ive allowed this to happen and concern I'm a single parent so have no input from her dad and just lost as to what is going so wrong . I know I now need to take readings from her monitor rather then book know I need to be keeping a closer eye but don't know why it happened in first place. Megs reply was i don't know . Any help would be great .


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[Neil Walters]

Re: Troubles with 13 yr diabetic

If it were me I would get a monitor that downloads the readings direct to a PC or smartphone so that she knows there is no hiding. But what she needs is to understand that whatever the reading there should be no fear of criticism just support and love.

She needs to know she is not alone whereas in hiding the truth from you she kind of has been and it must have been hard for her to cope with the stress of knowing the hb test would show the reality.


Diagnosed Type II 1998 1 x 80 mg Gliclazide, 4 x 500mg Metformin and 1 x 100mg Sitagliptin - HbA1c - 48 mmol/mol

 

[LittleWolf]

Re: Troubles with 13 yr diabetic

I'm not a parent but I know about hiding health problems etc from my mother.

Please make her understand that if she isn't controlling her diabetes well, she isn't 'bad' and you still love her but I get the impression she doesn't realise those numbers are an indicator of what's going on in her body, that she doesn't make the connection between what's on the screen and what could make her very sick. If she does know full well what her numbers mean and she falsifies her readings just to please you (this isn't about dishonesty) then she might be depressed. Talk. To. Her. Good luck xx


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[Hooked]

Re: Troubles with 13 yr diabetic

If it were me I would get a monitor that downloads the readings direct to a PCM or smartphone so that she knows there is no hiding. But what she needs is to understand that whatever the reading there should be no fear of criticism just support and love.

She needs to know she is not alone whereas in honing the truth from you she kind of has been and it must have been hard for her to cope with the stress of knowing the hb test would show the reality.


Diagnosed Type II 1998 1 x 80 mg Gliclazide, 4 x 500mg Metformin and 1 x 100mg Sitagliptin - HbA1c - 48 mmol/mol

^^^ Exactly what Neil says. Couldn't have put it better.
I went through years of doing similar with my mum. The Dr was always on my back no matter how hard I tried and I ended up thinking "what's the point?". Mum nagged and nagged, warned me of all the complications and I ended up believing I was going to get those anyway, so I may as well enjoy myself, yeah?

Now I'm paying the price with retinopathy affecting my eyesight. I've finally returned to the hospitals diabetic team (after a few years of trying to sort things out myself, unsuccessfully) and have found them wonderfully supportive and helpful. No judgements on how well or badly I've been doing; only support.

Def look into getting her the kind of monitor Neil mentions, and let her know you are there to help. Look into getting her to some of the diabetic camps that are on over the summer, or family weekends etc. Meeting others going through the same thing is a huge help, I can't recommend them enough.

Good luck and huge hugs.

 

[Neil Walters]

Re: Troubles with 13 yr diabetic

If it were me I would get a monitor that downloads the readings direct to a PCM or smartphone so that she knows there is no hiding. But what she needs is to understand that whatever the reading there should be no fear of criticism just support and love.

She needs to know she is not alone whereas in honing the truth from you she kind of has been and it must have been hard for her to cope with the stress of knowing the hb test would show the reality.


Diagnosed Type II 1998 1 x 80 mg Gliclazide, 4 x 500mg Metformin and 1 x 100mg Sitagliptin - HbA1c - 48 mmol/mol

^^^ Exactly what Neil says. Couldn't have put it better.
I went through years of doing similar with my mum. The Dr was always on my back no matter how hard I tried and I ended up thinking "what's the point?". Mum nagged and nagged, warned me of all the complications and I ended up believing I was going to get those anyway, so I may as well enjoy myself, yeah?

Now I'm paying the price with retinopathy affecting my eyesight. I've finally returned to the hospitals diabetic team (after a few years of trying to sort things out myself, unsuccessfully) and have found them wonderfully supportive and helpful. No judgements on how well or badly I've been doing; only support.

Def look into getting her the kind of monitor Neil mentions, and let her know you are there to help. Look into getting her to some of the diabetic camps that are on over the summer, or family weekends etc. Meeting others going through the same thing is a huge help, I can't recommend them enough.

Good luck and huge hugs.

If you get an iBGStar it will talk to her iPod or iPhone with the management app and it will be on a level she will understand - best thing I ever did


Diagnosed Type II 1998 1 x 80 mg Gliclazide, 4 x 500mg Metformin and 1 x 100mg Sitagliptin - HbA1c - 48 mmol/mol

 

[Mel24]

Re: Troubles with 13 yr diabetic

As having diabetes during my teens and puberty etc... I know all the tricks of the trades etc... I use to do this and didn't quite understand what I was doing to myself by lying about my readings, but Also i always use to let my blood sugars run high and miss injections whilst at school etc as You feel singled out Having injections or being on insulin pump. at school I hated having hypos from the stress of gcse coursework and school and the physical activity of school life... I'd say she is probably acting like a normal teenager with diabetes... Seen as I know a few diabetics who did this.


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[Karmamel]

Re: Troubles with 13 yr diabetic

Thanks so much for all your replies. Meg is using the Accu check expert meter and is carb counting. It's important for me to hear that her behaviour regarding her diabetes is quite typical for her age as we are told at appointments that she is the only teen within our region that hasn't managed to reduce her readings at a recent hospital appointment . So put a lot of pressure on myself and must of made meg feel even more singled out.

Meg does understand what her readings mean and after a heart to heart has said that she has been only injecting insulin when she checks which was only once or twice a day for last six weeks . She should be injecting 4 times a day and any extra for snacks . She is aware of the damage she could be doing to her body but I think it is fair to say at 13 she won't fully understand this. She had her kent football trials at the weekend so explained to her that not looking after herself will affect how she plays.

If meg was asked she would undoubtedly say I nag her about her diabetes in the sense that I ask how her readings have been when she returns home from school other then that I have left her to manage her injections and the testing as she was doing so well with this before.

Of course meg does see diabetes as a pain and has a cant be bothered attitude to most things that she has to do but doesn't want to do. We did have a reward scheme going where she would have 10 every week if she remembered to check bloods and take insulin the cheeky wotsit was still getting the 10 pound although she wasn't doing either. I now know to check her machine after each day and take the readings from that to send to diabetic team . Having people to talk to her own age with diabetes is an excellent idea as is the camps I will look into this .


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[Laubie]

Re: Troubles with 13 yr diabetic

I feel really compelled to write to you about my experiences.

I was diagnosed type 1 when I was 10. I was very lucky as my Grandfather was type 2 and recognised the symptoms, so I did not become unwell and didn't suffer too much.
I was such a 'good' diabetic. Extremely well controlled. Me and Grandad would even have a little competition who could get the best HbA1C readings!
And then tragedy struck and my Grandfather passed away when I was 14.

That was when it really started. My control became horrendous and it is something that affects me even now.

In my case, it wasn't only the death of my beloved grandfather that caused all this. I was depressed about his loss and so upset all the time and I believe it was this that 'pushed me over the edge', so to speak. I was, at the same time this was all going on, very depressed about my appearance. Feeling that I was too overweight and desperate to try anything to help me lose the weight. I was so sad all the time that really what I wanted was to just feel good about myself for a change and to just feel happy.

I then read something about diabetics witholding their insulin to help them lose weight.
I became obsessed. I started to think "is my diabetes why I feel so unhappy all the time?". I began to cut out injections. I felt that if I didn't inject for something I ate then it 'wouldn't count' in terms of calories. I then started to belive (quite dangerously) that not only would food 'not count', the more I ate the thinner I would get.
I started by cutting out my fast-acting completely and just taking my long-acting in the evenings. If I started to feel too ill (and in those days my 'too ill' would only be reached if i was about to faint, actually being sick or when my headaceh became too unbearable) I would dial up to 70 on my pen and just bung it all in. I was very unwell. And I didn't care because I was losing weight. People complimented me about how good I was looking.
Losing the weight made me feel delighted and for the first time in months I was feeling good about myself and how my life was going.

I cleverly missed hospital appointments, lost/ broke my monitors etc to hide what I was doing. I knew it was wrong.
And then my mum found out. She 'made me' show her my monitor. Up until this point I was trusted with my own monitoring and although she used to nag me about what my levels were I used to lie and write down false readings in my log book. And then she looked through my monitor one day. There had been hardly any readings over the previous months and when they were there they ranged between 20 and HI.
She was horrified and she absolutely flipped.

She then vowed to monitor me closely so that I wouldn't do it again. She asked me for an explanation and I told her it was because I hated having diabetes. That wasn't true. It was a lie. I LOVED having diabetes, because it allowed me (in a strange, unhealthy and bizarre way) to feel good about myself.
Elements of self harm here- check. Signs of depression- check. Eating disorder- check.
I told her that because I thought she would accept this explanation.

Although she started to keep a close eye on me, I continued what I was doing, albeit with far more cunning. I built up strategies so I wouldn't get caught out again. I had to keep doing it. It became so much of a habit that I couldn't do anything else. Even when I started to feel worse and worse and the bad effects started out-weighing the 'good' ones, I just couldn't stop. I often wet myself in public, had awfully bad breath, no energy at all, kept falling asleep in school and at other important times and felt sick and headachy constantly. It was not pleasant, but I was compelled to keep doing it.

And then my mum found out again. I was grounded, not allowed a birthday party, berrated by every member of my close family. They thought it was simply me 'acting out'. They thought I was going through a rebellious phase and i needed to be punished. I needed help.
After this, however, part of the 'fun' of it all became that I was deliberately defying everyone (because I didn't stop what i was doing, of course, just became better and better at not letting on that I wasn't OK). And I did find pleasure in it - it was fun to me, as I didn't consider the consequences of my actions. I found pleasure in the control I had over my body - diabetes had ruiled it for such a long time and now I was in charge! I found pleasure in defying 'the establishment'.

It wasn't until I moved away from home and went to university that I even realised what I had been doing. I got a new diabetes team at a new hospital and (although to this day I am not sure why I did it) I came clean with them. They helped me so much. I admit, whilst I was at Uni I didn't do much about my poor control. It toook a while to even become fully aware of what all my problems were and what actions I could take to get better. 5 Years after coming clean I can honestly say I am now on the road to recovery.

My point to you isn't that I think your daughter has all of this going on with her, but that I think you may need to tread carefully where this is concerned at the moment. Please be aware there may be more going on than her being a rebellious teenager.
From personal experience, all I can say is that I wish my mother had backed off a bit. That she hadn't reacted how she did, but she just talked to me more. Made me aware that she was there and I could tell her anything, whether it was about my diabetes or not. Because deliberately not taking your insulin is deliberately hurting yourself and those issues need to be addressed.

Please don't take what i am saying and worry yourself to death about it all though! I just want to make you aware that a LOT of teenage girls withold their insulin to lose weight or self-harm or simply out of defiance.
Keep talking to her. Don't think the problem will go away just because you caught her out this time and she promises to be better. But don't keep talking to her about her blood sugar levels (I know it's hard!!!).
Ask her how she feels today. Talk to her about how she felt when she had/ has very high blood sugar. Maybe try to go a whole week without asking her what her levels are??!! Talk to her about her diabetes and engage with her in different ways. Ask her to educate you - I always felt disgruntled that my mum would tell me how much insulin to inject, or how to treat a hypo. It wasn't her condition. For example, ask her to tell you all about how she thinks her diabetes is affected by her football. All diabetics are different when it comes to sport!
Because seriously, I only started taking responsibility for myself when I didn't have my mum 'nagging' me constantly about it. I don't mean to alarm you and I am not suggesting that you take your eye off the ball when it comes to your daughter. She needs your help, but she is also a teenage girl who wants to be her own person.

What you were told at your clinic about her being 'the only teen in the region to not reduce her readings' is in my opinion gross misconduct. You should not have been spoken to like that and I find it absolutely disguting. Are you both happy with your diabetes care team? It helped me loads when I switched as I wasn't happy at the hospital I was reveiving care form our the team.
You should probabyl complain. Or, even if you do not, your daughter is an individual, thankyou very much, not a vulgar statistic. Perhaps they should be trying to help her to lower her HbA1C, coming up with new strategies, talking to her, trying to get to the root of the problem, rather than pointing out her 'failing'. Just FYI - over 90% of diabetics (not jsut teenagers!) in the UK are currently out of the NHS range for HbA1C levels.

I really hope you both well and I hope your daughter can get the support she needs. Please be aware that she is NOT the only teenage girl to ever go through anything like this (most do) and please remember that her life shouldn't be all about diabetes. But she needs to learn to control it so that she can have a life.

Take care,
Laubie x

 

[Karmamel]

Re: Troubles with 13 yr diabetic

Thank you for sharing your story . It's certainly made me look at things differently . I did think that Megan was not injecting her insulin due to worries about her weight and have talked to her about this . She tells me its not because of that but still can't tell me why her answer being i don't know . With regards to diabetic team they haven't asked her why but have said to her she can contact them at anytime if she needs extra help. She has been seen by a psychiatrist which is quite routine but at this time everyone believed her control was good so it was all very routine but if I think back to that now meg was being honest as she then wasnt testing or taking insulin. I do think your right in the sense that things will be fine all the time I'm monitoring but as this has been a vicious circle lately I can see things things could go wrong again until we find out why she isn't complying with diabetes. So think I will contact psychiatrist to see what help they can offer. Megan's behaviour overall is quite distructive not just her condition there are other things that she has done in the past that were quite worrying although I have always thought this is just due to her age I think it is important to be sure there is nothing else troubling her. Thank you so much for your support


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[amberzak]

Re: Troubles with 13 yr diabetic

I used to have a doctor that shouted at me when he read my record book. I started writing false readings down. I was about 17. It's common.

She needs to know a high reading doesn't mean she's in trouble. Diabetes isn't easily cracked, especially in girls. She could get it cracked one month, then the weather changes or she gets really stressed, or her moods change, or she gets ill. Suddenly, it all changes.

I've been diabetic for years, and I still have problems some times. When I did my teacher training, I was under so much stress that my sugars were constantly high.

The key is she needs to test. But having a high reading isn't bad, it's what you do with that reading that's important. Make sure not to be dissapointed even if her sugars go off the scale, but to react to it like you would any disease 'okay, let's give you a bit more insulin and then test it again in an hour'.

Also, be prepared for some sugar lows as well, as she gets used to it.

I work with teenagers, so I'm also aware of teenage psychology. She wants to be the same as her friends, to eat the same as them and be the same. If she's testing more frequently and dealing with the high sugars as they come in, she will feel better, and she will be making her body work in exactly the same way as ours do automatically.

Also, I tell myself I can eat whatever I want. I just need to make sure my sugars are okay. So I will eat an icecream if my sugars are good. I found when I started telling myself I couldn't eat certain food, I wanted it all the more.

I'd say, sit down with your daughter. Tell her that you aren't disappointed in the high sugars, but the thing that upsets you is that she feels she needs to fake the readings. Find out why she does that? Is she afraid of upsetting you? Or is she trying to fool herself?

Make sure, all the while, you are not judging her. Looking after diabetes as an insulin dependent is very hard, and I for one hate it when people judge me. My mum has a to at me when my sugars drop, and I keep trying to tell her it's not my fault. I'm trying to stop them going high (I'm trying for a baby so have to be really good at controlling them) and the side effect of that is sometimes they drop.

You obviously care, or you wouldn't be here asking the question. That already puts you one step ahead. Just remember its perfectly normal, and there will always be times when, just as you all think its under control, something happens and it's lost again. Each day is a new day.

And don't judge.

Good luck. I'm sure it will work out.


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[Matilda14919]

Re: Troubles with 13 yr diabetic

I found out I was diabetic when I was 14 which wasn't fun - I couldn't eat what I wanted anymore and I felt like everyone doctors nurses dietician teachers parent were controlling my life so I started falsifying my records to satisfy them which wasn't good she probably feels pressured to live up to everyone's expectation. Let her know the risks and tell her you'll back off if she controls it better - that's what my mum did


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[John7956]

If it were me I would get a monitor that downloads the readings direct to a PC or smartphone so that she knows there is no hiding. But what she needs is to understand that whatever the reading there should be no fear of criticism just support and love.

"There is no such thing as a good or bag BG result - they all only tell a story and it is our job to find out what the story means and if necessary, change the ending" (a very good paediatric diabetes nurse specialist)


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[the_anticarb]

Re: Troubles with 13 yr diabetic

I was diagnosed at 15 (i'm now 36) and I well remember rebelling against my diabetes. It is hard to connect your behaviour with the consequences at that age. About four months after diagnosis I remember eating a load of bad staff and not testing my sugar levels, and nothing too bad happened and I remember thinking why should I follow all these rules.

I was made to feel 'bad' by the doctors and my parents for not following the rules (in those days pre dafne there was a lot more emphasis on never having sugary, 'naughty' foods) . I realise now that they were just trying to help me but at the time it felt like they were having a go at me.

I too went down the not injecting to lose weight road, I would binge and not take any insulin until I felt ill when I would start taking it again.

As I grew older my parents eventually realised they could not control me and pretty much gave up trying to.

Sadly I did get complications with my eyes which I am still suffering from and wish every day I could turn the clock back.

The thing that helped me most was connecting with other diabetics. In my youth, pre the internet, I couldn't do this and hated feeling different to everyone else, hence I denied my diabetes a lot. Having diabetes is hard and no matter how much you as a mum think you understand, you don't have to actually go through it and experience it. Its only when I found other diabetics, mainly through this site, that I began to think to myself well they can manage it so maybe I can.

If your daughter is willing, can she sign up and make friends with some other diabetics on here? That may help.

Also I don't think it will help if the doctors are very stern with her and make her feel bad and tell her off for not managing things. I know they want to help, but making her feel like a naughty little girl will not help as it will just make her resent her diabetes and the people trying to help her. I know she has lied to you, but she needs some sympathy and understanding as to why she has done this, because the diabetes is such a blummin awful pain to manage every day and she feels overwhelmed by it.

I do feel for you as her mum though, and I will probably be going through what you are in a number of years time, as I have a monogenic form of the illness which means my children have a 50% chance of inheriting it, so I will probably go through what my parents went through with me with at least one of my kids and I'm not looking forward to it.

Good luck

 

[Cupcaake32]

I was diagnosed at 13 and had dka 4 time betwee 14 and 18 after stopping my insulin to lose weight like everyone else commenting my mum just nsgged have u done ur test insulin weighed ur food ??? So i started lying to gey around the nagging im now 24 and live with my boyfriend and 2 dogs and since moving away my hba1c has co.e down from 15.6 holy beep high!!@! To 8.1 % but i no my mum was just trying to help its hard itll get harder when shes older sand with drinking ( tried it endedup in hos so dont drink now) and bedroom excercise she will get the hang of balancing insulin testing and food so she doent feel different for my english gcse oral project i spoke about my diabetes and got an a* so it does have upsides

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[Dougal]

Re: Troubles with 13 yr diabetic

I feel that you have been writing about me. I was 13 and wanted so much to be like everyone else. My Dad felt that I could beat it by believing in God, but I wasn't sure. I have had so many problems dealing with my Diabetes and Bulemia. Now I'm almost ok. If you have a teenage daughter, please try to be understanding - it is not easy.

 

[shayanjameel08]

Re: Troubles with 13 yr diabetic

No it's not true-- juvenile diabetes is called that because it sets in your youth.Eating alot of sugar will not in itself cause you to become diabetic -but it isn't good for you to eat a lot of sugar anyway.

 

[nigelho]

Re: Troubles with 13 yr diabetic

Hi Karmamel, This is just a short reply, just a snippit. My daughter was diagnosed at the age of 9 and is now almost 22 years old. Throughout her treatment at our local hospital things were pure guess work on the part of her diabetes team.and conflicting info on what to eat etc and because her insulin regeime was guess work her BGs were all over the place. On hospital visits the dietician always blamed her on secretly eating sweats. As my wife took over using common sense on eating etc..things improved. The team tired to get my daughter to inject 4 times per day but she didn't want to inject at school. Her main friends knew about her diabetes and always kept an eye out for her hypos.

If your daughter is offered/ask for one..a DAFNE course please go on it. The course teaches much more than carbs/insulin. As type 1 your daughter can eat what she like as long as she takes the correct amount of insulin. This is the hardest thing with diabetes know how to balance insulin against CARBS.

She will need a lot of support and it always got my family angry when the diabetes team tried to blame my daughter for her high readings..Most of the time it was due to NOT using the right insulins and not using the correct doses. Both my daughter and myself are type1s and having completed the DAFNE course we now feel more confident in managing our diabetes. Please e-mail me if you wish. Good luck.

 

[Lolamarie2000]

Hello I'm Lola and I'm not a parent of a diabetic because I'm only 13 but I know what your child is going through because this exact thing happened to me! I lied about my blood sugars for months and most days I didn't even do them! My mum thought I was fine until the doctors told her my hbc's were to high to read! I was crying because I never done my bsl for awhile and when I did do them they were always high and now I'm getting better if you would like some advice in what helped me keep reading...
I know your child might find it annoying but you have to check every single blood she does and make sure she shows you. It's completely normal for her to be finding difficult as a diabetic teenager because her hormones will be extra crazy ahaha! Make sure you support her and watch her do her injections until she thinks she is ready to start controlling herself.
Hope this help a bit and if your daughter would like someone to talk to I'm always her !xx

 

[Karmamel]

Thank you all for your replies . Lola wow! What a very grown up and extremely helpful response. I haven't been on the forum for a while but will certainly be getting meg to read your Reply.

Thanks very much


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[Miss90]

I was diagnosed at 12 and want through a similar thing. I was kind of in denial about being diabetic - I was the only one in school, didn't want to be labelled a freak ect so I kind of acted 'normal'. I was lying to my mum about my readings but she's a pharmacist so she eventually clocked on that my sugar readings weren't reflective I how I was physically feeling. I thought she would go mad but just sat me down an said that she loved me and I had to look after myself as I would get very ill and end up back in hospital on more drips.
I hope everything woks out for you both!


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