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Courses on treating type1

Discussion in 'Children & Teens' started by Triscornia, Feb 10, 2020.

  1. Triscornia

    Triscornia · Well-Known Member

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    Hi there, we have just passed our first year anniversary of my son’s diagnosis of type1. It was a very difficult year to say the least and I thought by now we would have mastered it but no. Seriously We don’t understand how we can give him the same foods and it reacts in totally different ways. It’s very frustrating to say the least. If he is low going to bed we give him a biscuits bring up his level, that same biscuit on one night could bring him to the level we want and another night hardly move. Now my Dr said never give him biscuits but a banana or yogurt. I feel we have no idea yet what we are doing and need a course. I check my son every night at 2am and sometimes have to wake him because he is low but normally he is ok, the other night I went out and didn’t check him and he was low all night and was upset I didn’t check him as I think he is afraid of what could happen. Like is it ever going to get better as I write this my eyes well up, he is still so thin it’s heartbreaking. Does anyone know of a course we go on in the UK? We were explained about it in hospital but really not enough. Thanks.
     
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  2. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @Triscornia

    This is a good course to help build knowledge: https://www.bertieonline.org.uk/

    'Think like a pancreas' by Gary Scheiner available on Amazon, is a really useful book to read.

    Unsure of your son's age but children have growth hormones which affect their insulin usage, as well as other variables like exercise, stress, other hormonal activity, sleep, and many other factors which can impact on the individual and these variables make stable control difficult and are outside our capability to manage the condition as effectively as we'd like. I would suggest getting back in touch with your DSN to discuss his control with them and ask for more support, they may be able to offer him a pump which would help micro manage his control more easily and combined with a continuous glucose monitor, it would help you cope better, if you can self fund then the Dexcom G6 is great as you would be alerted by smart phone to what's happening with him as it can link to other users, this system also has an alert which will tell you if he's going high/low.

    In regards to courses, there's some useful info on the JDRF website here, although ignore DAFNE as this is only available to adults: https://jdrf.org.uk/information-sup...diabetes-3/type-1-diabetes-management-skills/
     
  3. Triscornia

    Triscornia · Well-Known Member

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    Thank you for responding. My son just turned 16 so I guess hormones play a big part with this.
    Thank you for all the information.
     
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  4. porl69

    porl69 Type 1 · Well-Known Member

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    HI @Triscornia
    Some very wise words off JuicyJ there. I have been T1D for 49 years and it still confuses me on times. You can eat the same thing time and time again and get different BG readings all the time. Mastering it? Ermmm I don't think anyone will ever master it.....The only predictable thing about being type 1 is the total unpredictability of it!
     
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  5. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @Triscornia I'd also like to add that even as an adult I can still do the same thing each day, eat the same thing and still get different results, it's the fact that you are working with constantly moving variables which can throw you. There isn't perfection, but knowledge is definitely power so using all resources available to help educate yourselves is vital so you're doing the right thing asking for support there :)
     
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  6. Circuspony

    Circuspony Type 1 · Well-Known Member

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    Diabetes can be extremely frustrating at times. I think we forget when we are injecting insulin that although it does an incredible job of keeping us alive it can never replicate the sensitivity to which our pancreas and endocrine system operate.

    I have the same breakfast every morning and will often have wildly different BG levels 2 hours later. How well I've slept, if I've walked further than normal, time of the month, lurking cold virus all change my BG levels.

    You're doing well, so don't beat yourself up. Hopefully those books and courses will help too. Given your son is 16 now make sure he's reading the books and doing the courses so he can start to take responsibility for his food choices and insulin injections.
     
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  7. hyponilla

    hyponilla Type 1 · Well-Known Member

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    Are you familiar with Let me be 83? It's a very touching story of a mum and her son with type 1 diabetes who were on the blood sugar roller coaster until they went low carb.
    https://letmebe83.org/

    It might not be the way forward for you are pros and cons to this approach), but reading your post made me think of them so take a look at it.
     
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  8. KK123

    KK123 Type 1 · Well-Known Member

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    Hi there @Triscornia , all I would add (and it has been mentioned above), make sure you avail yourself of ALL the gadgets & technology available to help you. There are lots of them about now, some available on the NHS and I'm sure if you research it and check the specific criteria, you will see whether your son is eligible. The treatment of type 1 diabetes has got so much better now it doesn't have to be multiple injections/finger pricking/waking kids up to test. A libre system for example would be ideal, all you would have to do is hold it up to a sensor attached to your son's arm (like a shopping bar code!) without even bothering him. There's lots more too. Please work closely and robustly with your son and his diabetes team, do NOT sit back suffering, this really is a condition where you have to be pro active and KNOW what it is that will help you and then get it. As your sons gets older and becomes more independent he will find this stuff invaluable in helping him to live a (teenage & beyond) life where with as little faffing as possible and make him more confident when he's out on his own. x
     
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  9. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    Some great advice above & there are indeed some great gadgetry about to help your son & give you peace of mind.
    The same actions never seem to get the same desired effect on any given day. Which is why tracking BGs is paramount.

    That said, you are entitled to a night out. Don't feel bad about it. :)

    Your son is 16. He'll be wanting his nights out too.. :cool: Lol, days out too.. I know when I started work I learned as I earned.
     
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