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Help my daughter is Type 1, but wont take her insulin!

Discussion in 'Type 1 Diabetes' started by EdieLou, Nov 17, 2016.

  1. EdieLou

    EdieLou · Member

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    Thanks that's really useful. I will forward it on to her. I'm not sure her team would continue her care, that was certainly the suggestion when I mentioned the possibility, to her consultant!
     
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  2. azure

    azure Type 1 · Expert

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    It must be very upsetting and frustrating for you @EdieLou Especially as she sounds such an intelligent young woman.

    I don't know what to,suggest other than a real heart to heart (if she would engage with that). I don't know if she has family members or friends she'd open up to if she feels it would be awkward with you?
     
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  3. EdieLou

    EdieLou · Member

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    I tell her all the time, and give her lots of hugs and kisses, I know how important it is for her to feel loved and wanted.
     
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  4. azure

    azure Type 1 · Expert

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    A pump is a big commitment. As well as the boluses, the various basal rates need attention and you have to do extra blood tests eachbday. I say that not because pumps aren't great, but because I do wonder whether the work involved with a pump would be a deal breaker for your daughter.

    I wonder if you could maybe see if she can speak to a pumper and get an idea of what's involved before you think about buying her one?
     
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  5. EdieLou

    EdieLou · Member

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    She has opened up to me much more over the last couple of years. I am a very patient person and think very carefully before I speak, because she misinterprets things so easily. But she hates talking about her diabetes. She gets really angry and upset and gets herself all worked up, sometimes walking out, leaving me to worry that she is going to hurt herself. So I try avoid it most of the time and try to just show her that I love her and would do anything for her. I just wish I could take it off her and have it myself!
     
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  6. EdieLou

    EdieLou · Member

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    Thanks, yes, I think that's a good idea. She was offered the possibility of a trial pump when she was 13, but it didn't come to anything.
     
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  7. EdieLou

    EdieLou · Member

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    She did try this when she was about 14 , but it didn't work for her. She doesn't test at all now, & she eats haphazardly, so it wouldn't be any good! Thanks anyway
     
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  8. azure

    azure Type 1 · Expert

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    I completely understand why you avoid talking and always tread carefully. At least she's opened up a bit, which is positive.

    do you think she'd join here and talk to other T1s?
     
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  9. catapillar

    catapillar Type 1 · Well-Known Member

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    If your daughter doesn't test and is resistant to testing I would be really concerned that a pump is probably not the first option to try - pumping insulin safely does require testing. You also have to change the cannula every few days. Pumps aren't just available to buy, the selle will need to be confident that ther will be medical supervision and support; it's the medical supervision and support that is time consuming and if your clinic has a year long waiting list for a pump this is probably due to the unavailability of pump trained DSNs.

    I would suggest that your daughter might be better off add ressing her resistance engaging with her diabetes; seek psychological support from your team.

    Have you looked at continuous glucose monitoring or flash glucose monitoring as a means of over coming the resistance to testing?
     
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  10. Leanne28

    Leanne28 Type 1 · Member

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    I started on the pump 2 years ago and it is the best thing I have done, the pump is a big commitment as you are wearing this machine 24/7 and you will have to monitor ur blood sugars even more, especially after every set change (which u do every 2-3 days) as there is a risk of ur canula being bent and not getting insulin so it is important to check blood sugars for not going high
     
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  11. Juicyj

    Juicyj Type 1 · Expert
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    I agree with the advice from @catapillar about the pump, it takes a lot of effort before someone can move to a pump, I would suggest addressing the issues regarding her reluctance to test and inject. I know of a friend with a daughter in exactly the same place, intelligent but reluctant to test and inject, has been in DKA a number of times, she is at a turning point now but the decision to turn this around has come from her and the fact she has become more independent with her management and taking more pride in her own care. I would suggest dangling the pump as a carrot, so that if she can show improvement that you are prepared to help her, see if you can address the psychological issues first and get her to be more open. Can she connect to this forum ? If she is willing to then I would be happy to PM with her and help her ?
     
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  12. Jojozo1

    Jojozo1 · Newbie

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    Hi Edilou
    My daughter was exactly the same as your daughter and she had started to turn her self a round we changed her needles as she had a needle phobia she went on to safegard needles they are the same as the nursing community use . could your daughter be the same ? My daughter did get the pump and was doing great for 6months then she couldn't be bothered she just put up the dose of her background inserlin to compensate her sugars . but because it's only Nov rapid inserlin she used to become very poorly quickly . it won't be the quick fix if anyone that goes on the pump isn't willing to do the work . They is a course the diabetic team can offer to people carb counting it's called dafney it goes through everything it may help to get your daughter on that course .
    Sadly my daughter passed away on the 3rd may 2016 due to ketoacidouses she had been poorly over the wkend but she never told me how bad she was as she was up at university and didn't want to worry me .
    The day my daughter passed away I received a message saying she had got her sugars and ketone under control but she had a killer headache and was projectile vomiting she mushed not have put the canection to KDA but sadly I tried to ring my girl with in 10mins of that massage and never got hold of her .
    I don't want to frighten you as like you me and Zowie had a great relationship but always argued about her diabetes .
     
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  13. monski

    monski Type 1 · Member

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    In about 20yrs at a push, your daughter will have a heart attack. Her eyesight will fail and she will have severe nerve damage. All from constant high blood sugars. I know this because it happened to me. I'm now 43 and lucky to be alive.
     
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  14. tim2000s

    tim2000s Type 1 · Expert
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    Hi @EdieLou , I don't know where in the country you are, but would it help for your daughter to meet other Type 1s that are managing with the condition successfully, to show her that she isn't alone and the only person with it, and that there are many of us out there?
     
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  15. Freema

    Freema Type 2 · Expert

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    oh how terribly bad so sad for your loss so sad ..
     
  16. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I am so, so sorry for your loss, to lose a child must be one of the worse feelings in the world :( I just want to give you a big hug. Please accept my heartfelt condolences.
    Take care X
     
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  17. Robinredbreast

    Robinredbreast Type 1 · Oracle

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  18. GrantGam

    GrantGam Type 1 · Well-Known Member

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    @EdieLou, if your daughter could meet other T1's in person as @tim2000s has suggested then it will indeed give her reassurance that she's not the only one struggling with the condition.

    If you are in the UK, both of you could consider getting involved with your local Diabetes UK group. I have recently been in contact with mine and will be joining the committee next time home:) Not only would it offer the chance for her (and you also, if you wanted) to meet other diabetics; but they would then be able to share first hand experience and offer support/guidance in times of need. Further to that, it's for a good cause!

    https://www.diabetes.org.uk/How_we_help/Local_support_groups/

    There's also nothing stopping her setting up an account on this site as you have. There's a section reserved for younger members as well where she'll get to communicate with T1's her age all over the world.
     
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    #38 GrantGam, Nov 18, 2016 at 10:15 AM
    Last edited: Nov 18, 2016
  19. asparagusp

    asparagusp · Guest

    Just a thought, you might already been asked this. Is she is a relationship or/and has close friends/relatives apart from you, who could encourage her or indeed go to these local diabetes groups with her?

    If too she has a fear of needles, you can get needles that are concealed like Autoshield BD.
     
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  20. EllsKBells

    EllsKBells Type 1 · Well-Known Member

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    Hi @EdieLou , I would definitely second the suggestion made above of flash glucose monitoring/CGM as a way to increase testing. By the sounds of it, I'm about the same age as your daughter now, and was not that much older than her when I was diagnosed. I've had a Freestyle Libre for about three weeks now, and I'm actually testing properly again, for the first time in so, so long. The novelty of it helps, but also how easy it is. It's not perfect, of course, but it is something, so at least I have an idea. I've never really wanted to test when I know my sugars are high because I don't want to know, but because FL involves less 'conscious thought' in doing it, I test a lot more, and if there does come a time where I get resistant to testing again, boyfriend can grab hold of me and just swipe my arm with my phone.

    I really identify with what your daughter is going through right now. It was less extreme, but I had a similarly bad patch about a year and a half ago, where I was totally off the rails with it, and overdosed on insulin as well as not taking any for long periods. Your daughter is lucky to have such a supportive, caring parent as you, and I know it is difficult to see any positives in this situation, but at least with her being fairly close you still have some idea of what is going on.

    Feel free to drop me a PM if you'd like to chat further, or if you could encourage your daughter to join up, I would be happy to talk to her as well. It's made a real difference for me being here. I sometimes feel that Diabetes is a really lonely disease, because you can't 'see' it, so even if you do know someone else that has it you might not be aware of it. It's nice to know that you are not alone.

    Sending hugs and good wishes your way
     
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