Daughter not testing .... think she's in denial.... help please - worried sick parent :(

[Anglovesjesus]

I wonder if there are any other parents out there who are in the same position as me. My daughter (18) was diagnosed nearly 5 years ago, just 2 weeks after her Dad left home to start with things were pretty ok but over the past 3 years her levels are all over the place, she has been described as insulin resistant, she is on 2 lots of lantus a day, nova rapid during the day and metphormin tablets. She very very rarely forgets to take insulin but the problem is that she is so sporadic testing her blood. She says that she forgets and this may be the case but it seems like she is in denial. She just doesn't want to see what the reading is going to be so she doesn't bother. I think she thinks that because she is taking some insulin it doesn't matter, however her levels are constantly high and I am desperately worried about the long term effects. She appears outwardly confident and capable but inside there is a battle going on. I just don't know how to support her anymore. I have tried encouraging, backing off, nagging, and for a few days/weeks things get a little better but then everything crashes again and the lies begin and the testing stops. Please can anyone help, I am feeling so isolated and powerless, I just don't know what to do anymore

 

[jack412]

they can get themselves under so much pressure that every time they see a high reading, they feel like a failure and every high reading reinforces it.
who in their right mind wants to win or lose on a number. they have tried so hard and it all seems for nothing. If the numbers are rubbish and she's not testing. She doesn't have to feel like a doofus 7 times a day.

all you can do and the best thing is to give her a hug and share the 'diabetes sucks' feelings. it's not your job to tell her, because you already know that doesn't work

no one controls their diabetes properly, It seems to have a mind of its own and we are all along for the rollercoaster ride. there is no pass or fail, there's just doing what you can
tell her about the forum, she might like to talk to other T1's her own age, who know how bad it can suck.

 

[Indiana91]

I used to be like that when I was a teenager and it lasted for a couple of years.
I only used to test my blood sugar when I felt poorly and used to guess how much insulin I needed instead of carb counting properly.
I'm 23 now and I'm an obsessive tester! I test my bloods around every two hours and have got my hba1c down from 10.6 to 8.0. I've still got a way to go but I'm heading in the right direction.

I'm not trying to big myself up what I'm trying to say is that it won't last forever, from what I've read on here and other forums a lot of young people go through this and come out on the other side.

I found that the more my mom and dad nagged me about testing the less I would do it (seems really stupid now!) so it wasn't until they backed off a little bit that I took control of it myself because I had to.
I found myself a forum similar to this one and it was a great help to me, I learned a lot from it and found it very beneficial to speak to people my own age who knew exactly what I was feeling. To me, there is nothing worse than someone trying to relate to how you're feeling when they don't have a clue.

I hope things get sorted for her soon.

All the best

Indiana x


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[Indiana91]

I meant to say that I don't have any complications either.

It helped me to read posts from other parents who were worried about their kids. Made me see how my mom and dad were feeling.

Indiana x


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[kirstfinley]

Hey, I dont think I will help much but I was diagnosed when I was 8 and am now 23! I was exactly the same and I definitely was in denial, I never checked my sugars just tried to ignore the fact I wad diabetic, I just wanted to be like everyone else. It has only been the last 9 months where I have realised just how important it was reason being that me and my partner are wishing to try for a baby.

As hard as it is she will 'grow' out of it. The main thing is is she is injecting insulin!

One thing I hated was my mum nagging me lol and as I would never admit me this to my mum and dad it did make me rebel! But now I test 7/8 times a day im paranoid hehe xxx

 

[noblehead]

Not a parent of a type 1 but was diagnosed at the age your daughter is at now. Unfortunately injecting insulin isn't enough as she needs to know what her blood glucose levels are so she can adjust the insulin doses, it would appear she is in denial about the seriousness of her condition and she should seek help for this from her diabetes care team, often a bit of encouragement or counselling is enough to change peoples ways.

I don't know if a carb counting course such as DAFNE has been mentioned before, but this will help her immensely in her diabetes control and is suitable for those on a basal/bolus insulin regime, the following is an on-line carb counting course which will cover the basics, but I really do think that it would be beneficial for her to attend a carb counting course as she'll get to meet other type 1's, here's the link:

http://www.bdec-e-learning.com/

 

[Anglovesjesus]

Thank you so much to everyone who has already replied, I am so grateful for your support and encouragement. Thank you for the DAFNE recommendation, we had been told about this a long time ago but had forgotten until now, I will contact the hospital to get it sorted. I will also get my daughter to read these posts and encourage her to log on and see if she can find other people her own age who can relate, I've been told before that it is probably something that she will grapple with during her teens but come out the other side, I am hoping that this will be the case and that we can testify to others in the future. Thank you again so much for bothering to reply, I really do appreciate you taking the time to reassure and support a random paranoid mum! I wish you all the very best in your journeys too.

 

[isajane]

This is my first time on here, but I just wanted to say what a help it is to know others are (or have been) in the same boat. My 15 year old son was diagnosed with type 1 last year and for the first 6-8 months was an absolute star - I was so proud of how quickly and responsibly he adjusted to his condition. However I've recently noticed that he is testing less and less and he rarely injects. I have tried everything to get him to engage again, positive reinforcement, rewards, discussion etc, but as soon as I mention the D word, my usually loving and cheerful son becomes closed off and resentful. His HbA1c continues to be very good or excellent, which is his answer to everything - he says he's got it under control, when, in actual fact, he has no idea what his blood sugar levels have been like over the past 20 days, as he hasn't tested! I feel desperate about the long term effects of high blood sugars and yesterday I even tried scare tactics, showing him pictures of what could happen, but he just doesn't seem to take it on board. He left for school this morning without his diabetic kit and yet again, he hadn't tested his blood. Reading the above posts at least gives me hope that this is just a temporary lapse and that one day he will realise the importance of taking control of his diabetes. Thanks for the reassurance - it helps.

 

[jackgard]

I wonder if there are any other parents out there who are in the same position as me. My daughter (18) was diagnosed nearly 5 years ago, just 2 weeks after her Dad left home to start with things were pretty ok but over the past 3 years her levels are all over the place, she has been described as insulin resistant, she is on 2 lots of lantus a day, nova rapid during the day and metphormin tablets. She very very rarely forgets to take insulin but the problem is that she is so sporadic testing her blood. She says that she forgets and this may be the case but it seems like she is in denial. She just doesn't want to see what the reading is going to be so she doesn't bother. I think she thinks that because she is taking some insulin it doesn't matter, however her levels are constantly high and I am desperately worried about the long term effects. She appears outwardly confident and capable but inside there is a battle going on. I just don't know how to support her anymore. I have tried encouraging, backing off, nagging, and for a few days/weeks things get a little better but then everything crashes again and the lies begin and the testing stops. Please can anyone help, I am feeling so isolated and powerless, I just don't know what to do anymore

 

[l.worthington1]

I wonder if there are any other parents out there who are in the same position as me. My daughter (18) was diagnosed nearly 5 years ago, just 2 weeks after her Dad left home to start with things were pretty ok but over the past 3 years her levels are all over the place, she has been described as insulin resistant, she is on 2 lots of lantus a day, nova rapid during the day and metphormin tablets. She very very rarely forgets to take insulin but the problem is that she is so sporadic testing her blood. She says that she forgets and this may be the case but it seems like she is in denial. She just doesn't want to see what the reading is going to be so she doesn't bother. I think she thinks that because she is taking some insulin it doesn't matter, however her levels are constantly high and I am desperately worried about the long term effects. She appears outwardly confident and capable but inside there is a battle going on. I just don't know how to support her anymore. I have tried encouraging, backing off, nagging, and for a few days/weeks things get a little better but then everything crashes again and the lies begin and the testing stops. Please can anyone help, I am feeling so isolated and powerless, I just don't know what to do anymore

i went thru years of doin that when i was a teenager.....the best thing i can tell her is try not to snack in between meals as this keeps her sugar high....and try to eat lower carb meals.....i still struggle now and im in my 40's.......see if theres a course she can go on...i went on the DAPHNE COURSE it was great to help understand how it all works

 

[jackgard]

I fully understand where your coming from. My 18 year old is exactly the same. Been diagnosed 4 years. She wont go to clinic, doesn't test unless she feels unwell and seems in denial. I have tried the nagging, lecturing etc but it doesn't work. I have now come to the conclusion that I am there to support her but she needs to take responsibility for her illness. She knows the effects of long term high blood sugars. I still worry all the time, especially as she has now left home. Glad to hear I am not alone.

 

[Bigbluebox]

I done the exact same thing as your daughter when I was about 16-17 which was only about 3 years ago. For me personally it was about wanting to fit in and not being the odd one out having to test and inject all the time when out with friends. I do think having supportive friends helped me get over this, but honestly my parents were always commenting on it and it did help. It shows you care. Doing the choice course (adolescent version of Dapne I think) helped me get better control and made me not worry as much about doing the tests because I got to eat more stuff that I had always been told to avoid if I kept an eye on it more.

 

[FTroke91]

I went through the same thing about a year ago now (age of 21)...I took one test a month for about six months...and finally admitted to my DSN last December, She put me on monthly reviews and helped me to get back on track with my testing. I also did DAFNE which not only bought my HB1AC down from 8.7 to 5.9 but also got me into a routine. I now do at least 4 BGs a day and have done since March, without fail.

 

[Serendipity21]

I did the same thing at her age and it lasted well into my early twenties. My mum also went through what you're going through and it is extremely difficult for both of you. Meeting other young diabetics really helped me...the first time I met anyone near my own age was at the DAFNE course in 2010. This was the first turning point. The second was earlier this year when I started volunteering with DiabetesUK as part of the Young People's Programme (YPP). The whole reason YPP exists is because there is a definite lack in resources aimed at young people. Maybe introduce your daughter to #TYPE1uncut which is a YouTube channel with lots of different information videos made by type 1 diabetics (18-30) aimed at young people of the same age. It doesn't talk about things in numbers and text books, it's aimed at real life issues that we deal with day to day...meeting some of the others in the videos has changed my life, just having someone my age who completely understands. There's several videos and there's new ones about to be uploaded in the next few weeks.

Here's the link:

It might help, it may not but I wish you all the best there's videos of FaceTime conversations between family members on a couple of videos that you might relate to as well, it's completely normal for you to feel like you do - most parents would agree!

 

[donnellysdogs]

I also know of a friend with his 20 yearold daughter who was lucky enough to be given a pump.. Who won't use it and it left in a box in his shed... He too has had to "back off" from asking questions. We occasionally meet up so there's hope that she will see me being an older person with a pump... She not happy that she had to take her pump off to bolus n do everything and not like me with a remote though.

It is very hard for parents. 30 years on, last year I got the strength to tell my mum it iritated the hell out of me that she only ever asked if I was high or low. Never expecting me to be normal.. Which 96% of time I was.
When diagnosed T1 (i had left home at 15) and was totally independent my parents went and emptied my cupboards in my bungalow of anyrhing "bad" replacing it with my mum making "good" foods". This was 30 years ago and certain things from those times do stick in your brain. The love your parents tried to give, but not actually sitting at a table with you and waiting till you had tested (5 mins in those days) and injected) before tucking in. That still irritated me with my hubby up until last year). Small things that can really irritate from a diabetic view, and yet you don't actually want to tell your loved ones.

It may be a simple thing that sitting at a table together and just adding up the carbs for your child and telling them privately before the meal that it's say 30g of carbs for their injection ad everybody waiting without moaning to start eating.... So that your child doesn't actually feel different. But all sitting together for a meal each day would be a good start to ensuring an injection. Also if they aren't being good about injecting...then giving low carb meals would be better....

I wish their was a group of good older diabetics available all over the country that could meet up with struggling children and parents for a meal just to help the children to realise they aren't different.... That there are others having to do it without feeling different.... Things like this can make children feel normal.

I had the luck to know Gary and Kevin Mabbutt when I was diagnosed. I knew Kevin the un diabetic more and would go and watch them in VIP seats at Bristol City and Bristol Rovers. I was lucky that I sort of had a diabetic hero in real life to look up to. So this helped me enormously. Kevin came down to Weymouth and took me out in his cabriolet car for a spin around and I thought I was top girlie and not treated different to anyone else... I was made to feel special but that I could do totally normal things in a wonderful normal way....

 

[gymbob]

Like nearly all the other adult type 1 people here, I neglected the condition in my teens. Unlike most I'm well past being in my twenties, in fact I'll be 45 next month. I have minor retinopathy, only detectable on annual retinal photography. No other complications. All teenagers accuse their parents of trying to control their lives, and I really used to feel my mum used my diabetes as an excuse to control more than others. Now i know she was just worried, but if she even asks about my diabetes i still have to surpress that one teenager. I know you are worried sick, but you may have to just ride it out, but at least she is still injecting, some give that up to! Make sure you are mainly the loving supportive mum she needs now, even though I know it will mean gritting your teeth while she makes some bad decisions!

 

[Danaemac]

This post sooooo sounds like me I was that 15 yr old very ill / underweight teenager when I was diagnosed and coincidently my dad had just left the week previously I also lost my grandad the same week so not a very pleasant time in my life, however it was a relief to know what was wrong from then really I was in denial hearing the phrase out of my concerned mothers mouth of how's the blood sugar, shouldn't really be eating that etc etc was a lot of what got to me, if became about my condition not about me, I know she didn't understand and it did become a battle to the point I shut her out completely, (I know this probably isn't what you want to hear ) eventually I moved out but still every time I. Phoned first question wasn't how you doing it was how's the blood sugar it wasn't going away I knew it was there I just wanted to be treated normally I went to appointments at first but then it was come to clinic sit for 4 hrs and the Dr may speak to you like a human being but all you generally got was you shouldn't be doing this or that and I stopped going, it was all negative my life had been turned upside down on 3 separate incidents all I actually wanted was someone to give me a hug and tell me that everything was going to be ok, this continued for 5 yrs no support no reassurance and no help, I knew I needed the help but also knew what I should be doing, I eventually at 23 found my now husband who really has no idea about my diabetes but that is find as far as I'm concerned he knows how to treat a high / low and there is sick day rules card in my kit so not bothered but for the first time in years I was treated as a person not a person with a condition. We moved area and I decided I was going to see a new team a fresh start and see what could be done, I now have a great team, I was offered an insulin pump I said no I didn't want the reminder all day everyday connected to something my levels were not great at all and I ended up needing 4 operations on my eyes I knew at this point I needed to take control last year I agreed to an insulin pump and through my own choice attended to see my DSN once a month discussing things changing things together and engaging in my own care not being dictated to, I also found this forum and started learning about things carb counting, insulin pumps complications, I also read a thread you may be able to search for terminal and scared by kman what an effect that man and that thread had on me I went to my DSN and decided on a pump and from that day 6 months later my hba1c dropped from 9.8 to 6.8 the lowest it's ever been, my life transformed and my pump I got 06/05/2014 I would not give it back not for anything ever I met on my carb counting course some other type 1s 2 of whom I would class as very good friends and a support network I had never previously had life is all good my mum doesn't even ask how things are anymore she actually asks if it would suit clients she has she is even contributing to my new freestyle libre so I don't need to prick my fingers anymore might be worth looking at if she doesn't want to prick fingers needs a bit of financial input though as not funded

I know this sounds like a bit of a sob story but I guess what I am trying to say is maybe forget the diabetes and give your daughter a hug and ask her opinion you may be surprised of the outcome

You could also Show her this thread or leave the forum open conveniently somewhere

And you or her please feel free to pm if it helps

 

[kman]

I wonder if there are any other parents out there who are in the same position as me. My daughter (18) was diagnosed nearly 5 years ago, just 2 weeks after her Dad left home to start with things were pretty ok but over the past 3 years her levels are all over the place, she has been described as insulin resistant, she is on 2 lots of lantus a day, nova rapid during the day and metphormin tablets. She very very rarely forgets to take insulin but the problem is that she is so sporadic testing her blood. She says that she forgets and this may be the case but it seems like she is in denial. She just doesn't want to see what the reading is going to be so she doesn't bother. I think she thinks that because she is taking some insulin it doesn't matter, however her levels are constantly high and I am desperately worried about the long term effects. She appears outwardly confident and capable but inside there is a battle going on. I just don't know how to support her anymore. I have tried encouraging, backing off, nagging, and for a few days/weeks things get a little better but then everything crashes again and the lies begin and the testing stops. Please can anyone help, I am feeling so isolated and powerless, I just don't know what to do anymore

Sent short PM.

 

[ManMountain]

I don't test, I carb guess rather than count, and I've been in denial for 38 years.
Don't put any pressure on her with the phrase "..because your a Diabetic", trust me, we get sick of hearing it, especially from our mothers.
Be there for her when she needs you, she'll deal with it in her own way.
Ask, don't tell. Inform her friends of your concerns, but don't put pressure on them to pressure her.
Don't make Diabetes her life.

 

[gymbob]

Don't know if it would help at all, but just sawa review of an app called Diabetes Companion by mysugr, where a teenager said they found it really motivating. Reviews have it as a really fun app which may help her with motivation...