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How did your parents take the fact that their little child has diabetes?

Discussion in 'Type 1 Diabetes' started by Zhnyaka, May 21, 2022.

  1. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    If you got diabetes as a child, how did your parents react to it? Have they tried to treat you in any non-standard ways? Did they refuse to inject you with insulin? What happened in the end? Did they say that you were healthy when things weren't going well at all? It's just interesting how common is the situation when parents deny the presence of diabetes in their children.
     
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  2. Antje77

    Antje77 LADA · Moderator
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    Did this happen to you? Based on your post in the Introduce Yourself thread I fear it did.
    If so, it's very shocking, and I'm very glad you're still alive!

    I really hope things have settled between you and your parents by now.

    edit: Oh, that wasn't an answer to your question at all. I was diagnosed at 39, and my parents had already died by that time so I have no answer. I'm sure they would have tried their very best at keeping me safe and healthy, had I developed diabetes as a child.
     
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  3. Antje77

    Antje77 LADA · Moderator
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    I also think it's very uncommon, and it could lead to parents being denied the care of their child by court for the childs safety.

    edit: I just did a google search on parents refusing to give their child insulin for various reasons and read a couple of articles.
    I won't share links here, I feel rather sick now from reading them. It looks like it - thankfully - doesn't happen often, but when it happens it often ends bad, with a dead child and a court case. Or, with luck, with a very ill child and a court case.
     
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    #3 Antje77, May 21, 2022 at 5:11 PM
    Last edited: May 21, 2022
  4. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    It was a long time ago. I'm already an adult, and it doesn't matter how my parents treat my diabetes, I have a good relationship with them, even if they don't accept what happened completely. At the age of eight, I almost died because someone told my mom that diabetes can disappear if you pray, and that insulin is very dangerous for children. But I had a wonderful endocrinologist who explained long and hard what would happen without insulin. I have no serious psychological trauma from what happened, the only thing is that I now have an extremely negative attitude to religion and consider Frederick Bunting my god. My parents and I have different religious and political views, but this does not affect my love for them. I've grown up and I can take care of myself.
    Haha, though, when my mom saw that Frederick Bunting's picture was hanging on the refrigerator in my apartment, she asked me to take it down with the words "people will see it," even though all my friends know about my diabetes, but I doubt that any of them know what Frederick Bunting looks like
     
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  5. Antje77

    Antje77 LADA · Moderator
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    That's a wonderful outcome, thanks to that endocrinologist! Very happy you and your parents have a good relationship!
     
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  6. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    I had such an amazing first endocrinologist that when she retired and a woman took her place only after university, all the children (I was 12 at that time) who were treated by my first doctor seemed to know more about diabetes than the new doctor
     
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  7. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    I got it at 11 months. My mother would have been nearly 40 and had a very old-fashioned view to illness. If the 3 of her children had a headache, we were sent to bed with a glass of water. In many ways I'm grateful as I have never relied on unnecessary medication. She didn't fully understand diabetes, but never deliberately tried to ignore advice. My father, who was 29 when I was diagnosed, had the fortune of being a naval nurse when he did his National Service. He was taught to give injections and did up to 3oo of penicillin a day, for what are now known as STD's! I was injected by both of them until I was 8, and to this day, my father remains the finest injector I have ever known, even with the old "knitting needles"! Twenty years later I had my own blood testing kit, and when visiting my parents, my mother would usually offer me a chocolate. "I'll just check whether I can"
    "Surely one's not going to hurt?"
    "Er yes it is, I'm 10.4".
    "Oh, bad luck".
    I have never felt critical, and regularly remind myself that I owe my existence to them and, obviously, Frederick Banting! It is also worth quoting my late stepmother, who trained in the 1950's as a doctor. She told me that with diabetes they didn't really know what they were doing, but were grateful if they managed to keep patients alive!
     
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  8. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    Just like my mom ;)It's sad that between my case and yours, half a century of human progress

    I want to believe that now doctors know what they are doing, but I think that in many ways your stepmother's words are still true
     
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  9. Rokaab

    Rokaab Type 1 · Well-Known Member

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    Problem is though that whilst some doctors may know what should theoretically work, many of us are not 'Mr/Mrs normal' and 'what should work' often will not work and needs a lot of changing/tweaking

    Personally I don't know what my parents reaction actually was as I was too young, I was only 2 when diagnosed, but I'm guessing they were told that their kid needed these injections every single day otherwise they'd die, and so they did do said injections.
     
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  10. StewM

    StewM Type 1 · Well-Known Member

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    My dad is very much a “numbers guy” so a lot of aspects of Diabetes Management came very naturally to him. He would follow guidelines but he wouldn’t simply do something cause he was told to. He’d give everything a chance to work but he’d modify things if they didn’t. He’d also challenge consultants on things he tried and didn’t work. A lot of Doctors didn’t like this, but the Old Staff Nurse thought he was great (even though most patients found her “a bit scary”).

    Broadly speaking, his methods could be described as rigid moderate Carb cause of the fact I was on Mixed Insulin for the duration of the time he was handling my Diabetes.

    I guess the main differences between my style of managing my Diabetes and his is I always for ways to make my methods flexible to what life throws at me. Whereas he’d look for ways to force life to fit optimal control.

    *Edited to fix typos.
     
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    #10 StewM, May 21, 2022 at 9:34 PM
    Last edited: May 22, 2022
  11. EllieM

    EllieM Type 1 · Moderator
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    I was very lucky in that my mother was diagnosed T1 in her early twenties (mid 1950s), very very late (as in she almost died and was skeletally thin). So when aged 8 I wanted a drink of water two middle of the nights running, she had me off to our GP to do some tests. I had no idea what it was about, they just told me I needed some blood tests and if they were negative I'd have to retest, so I naively hoped they'd be positive. :):):)

    They sent me to hospital with my mother to be "balanced" , claiming that she needed to be "rebalanced" (I'm sure that wasn't true and in retrospect I don't know if she was actually staying in the hospital, but my biggest memory of the time was being given two barbies with two shoeboxes of their clothes and accessories from a teenage family friend who was growing out of them.)

    At the time my parents presented it to me as not being a big deal, which made sense because I already knew my mother was T1. I learnt as an adult that my mother felt agonisingly guilty about it, and was busy being told/fearing I'd die at 50. but I had no clue at the time. T1 was just an inconvenience that I had to put up with, a bit like brushing your teeth. I only learnt about diabetic complications when I was much older (this was pre glucometer so blood sugar control was pretty basic, you either urinated sugar or you didn't).

    I am very grateful to my parents for a lot of things, including how they handled my diabetes. (When my children were little I occasionally worried they might have T1, and invested in a tub of urine testing strips, on the principle that if they were T1 they'd soon enough have bgs over 10, and the bg strips would detect that without traumatising them with blood tests. Luckily I very rarely needed to use the strips and they were always negative.)

    My mother was brought up as a Christian scientist, not 100% sure what would have happened if she'd been diagnosed as a child.... (Though I suspect her mother would have broken with her religion rather than watch her child die, and my grandparents did have medical care in their old age.)
     
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  12. Riva_Roxaban

    Riva_Roxaban Type 2 · Well-Known Member

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    It happens here in Australia as well of parents not accepting the fact that their children are crook.

    I will not post links either.
     
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  13. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    I think this is common in all countries. Now, of course, I treat doctors like gods, and hormone therapy as something amazing, but I think that this is due to diabetes, not in spite of it. Many people believe that hormones are something terrible, and that doctors are plotting something bad just to cash in. I don't know how I would have reacted to this if my whole life's communication with doctors had consisted only of the need to treat teeth sometimes
     
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  14. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    I was 20 when I was diagnosed Zhnyaka, and very very glad that I was old enough to manage my own care, although the lax, or unaware approach of medics to symptoms of T1 that preceded diagnosis meant that I was lucky to be blue lighted to a hospital just in time.
    My mother had no idea about science; she described any medicine as ‘the blue pills’ or ‘the pink liquid’, and doses were arbitrary whatever instructions were given. A swig, a few, depending on how she felt. If my sister or I were prescribed medications she always wanted to share some.
    She also found it difficult to care for others. When DKA became worse for me she, too, took to her bed. (I was briefly at home from Uni for the Christmas break.). Luckily, she called a doctor in when the sound of my attempts to breathe penetrated two walls and a corridor.
    Looking back, it’s clear that she needed help. At the time, after growing up with her as the only carer, and spending a lot of our youth at a subsidised boarding school, neither my sister nor I realised how very mentally different she was from ‘normal’ people. We knew she was different, but we didn’t know that many other families.
     
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  15. JMK1954

    JMK1954 Type 1 · Well-Known Member

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    I was diagosed aged 10 in 1964, during the school.summer holidays. My dad was a pharmacist and had evidently been disturbed by the noise I made when I went to the toilet in the middle of the night. He instructed my mother to take me to the doctor's with a urine sample and the GP said (it was a Friday)there was sugar present at 2% and told my mother to cut out all cakes, biscuits and sweets over the weekend. On the Monday we went back with a new urine sample which still showed sugar. He sent us home and rang back a couple of hours later, giving instructions to take me to Alder Hey, the children's hospital in Liverpool, later that day.

    I was in hospital for three weeks, basically because I was kept in until my parents and I could carb count and do insulin injections. The last few days were spent in transferring me from two injections a day to one.. Nobody ever told me I was diabetic, because I burst into tears on being told I had to stay in hospital, which interrupted the doctor's careful explanation. I realised I was a diabetic, because my dad had brought home Rose's Diabetic Orange squash for me two days earlier, so I had asked for some explanation of the term.

    The hospital staff varied from the good to excellent in dealing with me, but I refused point blank to do any injections when I got home. It hurt too much. I only did the injections to be allowed to go home. My dad took over the injections. My mum refused to do them point blank.

    It was five years or so before I finally started to inject myself. Nobody told the hospital I wasn't doing my own injections. I suspect they would have re-admitted me, so an endless loop of admissions and discharges would have resulted. My dad, being more informed, was the one who acted as the judge over what I should or shouldn't eat, which worked pretty well. The only time I argued with my mum over food was when I wanted salted peanuts when everyone else was being bought sweets in the newsagent's. She referred to my dad whenever a decision had to be made.(She did over a lot of things.) I feel I owed my dad my life. He recognised the symptoms, he did my injections and covered for me, he bought me disposable syringes as soon as they became available (but not on the NHS). Thanks to him, I didn't miss half my education. The hospital teaching was a bit patchy, even for a primary school level.
     
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  16. Zhnyaka

    Zhnyaka Type 1 · Well-Known Member

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    I am so fascinated by the stories about fathers who were engaged in the control of their children's diabetes! My dad tried to give me an injection once and since then has never repeated it in all 18 years. Although it's not so much about him as the fact that, in principle, I never liked it if someone besides myself gave me injections, so I very quickly started injecting myself and didn't allow anyone to do it.

    Also, I think I realized that I am grateful to my endocrinologist for my complete acceptance of diabetes much more than I thought. I want to thank her, but I'm not even sure she's still alive.
     
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  17. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    I managed to track down the nurse who figured out what was wrong with me 39 years later! It might pay you to look at the website of whatever hospital it was where you met the endocrinologist. Even if they no longer work there, the hospital ought to be able to tell you whether she is still alive and even contact her to ask her to get in touch with you. I also was able to track down Dr Peter Watkins, who ran the Diabetes Department of King's College Hospital from 1979-2000, by doing exactly this in 2009. I'm very glad I did because both these giants in my life are no longer with us.
     
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  18. Hopeful34

    Hopeful34 Type 1 · Well-Known Member

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    GDPR came into effect in 2018, and I would think this would prevent a hospital from telling you if someone had died, that's if they even knew.
     
  19. Antje77

    Antje77 LADA · Moderator
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    GPDR is a European rule, so may not apply in Russia.
    If you have a name and a profession or city, chances are Google will know if they're still alive.

    And there's always the other direction: a hospital can choose to send on a note to a retired employee, rather than giving information to a former patient.
     
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  20. JAT1

    JAT1 Type 1 · Well-Known Member

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    I admire your attitude very much.
     
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