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Hi Parents

Discussion in 'Parents' started by Jayden2407, Aug 3, 2018.

  1. Jayden2407

    Jayden2407 · Well-Known Member

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    Hello,
    I’m just wondering how many parents with children that are type 1 are on here?

    How are you both coping/dealing with things?

    Just reaching out to other parents in my situation and would be great to discuss :) My son, Jayden was diagnosed 8 weeks ago.

    Janelle
     
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  2. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Hi Janelle - I'm not a parent, never mind to a child with T1, but just wabted to ask if your clinic or Diabetes Centre does anything for parents? I know my local one does loads of stuff for the children, where parents can be involved or just tag a long for support from the other parents.

    Although it's about 15 miles from the Diabetes Centre, there's a T1 children's spors day in the village I live in on Sunday. There are usually about 30-40 children, their brothers and sisters, Mums and Dads rockup to these things. There'll be all sorts going on, but you bet your life the parents will have as much fun, and get as much support as the kids.

    It's quite funny watching all the kids peruse the buffet tables, then testing and twiddling madly with their pumps.
     
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  3. Heyrehair

    Heyrehair Parent · Active Member

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    Hi,

    Our daughter was diagnosed aged 2 last year in October.

    Some days / weeks have been pure hell and others pure joy.

    She has a bug at the moment, so we are dealing with elevated bloods and Ketone levels and had an overnight stay on the ward, but last week we celebrated her 3rd birthday and barely even noticed the impacts of T1, so we had a great few days.

    We've also just got the new Dexcom G6 CGM and so far it's seems much more reliable than the G5.

    Eight weeks in can be a daunting time, hope it's going well for you all.
     
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  4. MrMatty

    MrMatty · Member

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    Hi,

    My son was diagnosed last October at 3 years old, he's now just turned 4.

    It's very difficult at such a young age, he doesn't understand. He just goes with it and we're the ones who manage it for him.
     
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  5. Jayden2407

    Jayden2407 · Well-Known Member

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    Hi,

    Yes the clinic advertise family days for T1’s but with my son just turning 11 he won’t be up for doing things like that unfortunately! :(

    It was more for me to speak to other parents in my situation, I have told my son I’m on here and hopefully he’ll get on himself in the next few years :)

    It’s a shame actually because it sounds really fun!! thank you
     
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  6. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    From the group activities I have seen, there's a real range of agegroups, but there's no point forcing him to attend. Would he try one thing, and that could give you a chance to engage with other rparets and at least make some connections?

    Alternatively, would Jayden's DSN put you in touch with another parent. Peer support can be invaluable.
     
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  7. Jayden2407

    Jayden2407 · Well-Known Member

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    Thank you - we’re doing good, it’s all so new but we have had mainly good days so far..

    Sorry to hear about your poorly daughter, I hope she has a speedy recovery. I’ve not experienced coping with T1 & sickness as of yet but I have read up on it for when the time comes.
    I have also read up on the Dexcom, I believe that toddlers, children who are not hypo aware and those who are very active have the option of the Dexcom.

    My son, Jayden uses the Expert meter with the finger pricking kit which he seems okay with, I have mentioned about scanning for readings but he doesn’t seem interested yet, maybe something for him in the future.
     
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  8. Jayden2407

    Jayden2407 · Well-Known Member

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    Hi,

    Yes it is such a young age, my son was 10 when diagnosed and turned 11 last week. I pretty much manage all of his carb counting but he does his own finger pricks and injections, even his Basal at night - very proud of how far he’s come in such a short time.

    Does your son have the Expert meter or Dexcom system?
     
  9. Jayden2407

    Jayden2407 · Well-Known Member

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    Yes possibly.. I suppose I could talk to him about it and see what he thinks. He’d probably enjoy himself too, if like to do something like that so maybe if I do speak to him he may consider it.

    I know two other women who’s sons are also type 1 so we speak about it which helps :)
     
  10. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    It's amazing the strength onf the bonds diabetes can build between peers. I hope, even if it's just to indulge you that Jayden and you will find something to go to together. There's a T1 sportrs day in the village here tomorrow, but that's probably a bit of a step out. :)
     
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  11. Jayden2407

    Jayden2407 · Well-Known Member

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    Where’s that? Yes I will speak to him. I know exactly what you mean as mine and Jaydens relationship has gone from strength to strength since his diagnosis it’s certainly made our bond stronger, we make a great team I think
     
  12. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    I'm in Leicestershire, which I think is a fair way from you.

    You and your young man are doing very well indeed. You're undoubtedly a credit to each other. :)
     
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  13. MrMatty

    MrMatty · Member

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    We use the Aviva Expert. We've just used a Freestyle Libre sensor this week for this first time and it stopped working this morning. It's only been on for 4 days. I'm waiting to hear back from Abbott.
    Do you check your son during the night? I do a last check at about 10.30ish and then depending on the result, will either leave him for the night or check him again later.
     
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  14. Jayden2407

    Jayden2407 · Well-Known Member

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    Yes that is a bit of a drive away, we’re in Manchester :)

    Thank you so much
     
  15. Jayden2407

    Jayden2407 · Well-Known Member

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    I’ve heard mixed reviews about the Freestyle Libre. Is is available on the NHS as your son is so young?

    Yes I check him in the night pretty much once a night. I check him a couple of times If his reading is low before bedtime. Plus if below 6 before Bed he has a plain biscuit.
     
  16. MrMatty

    MrMatty · Member

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    They told us when he was in hospital that he would wake up in the night and tell us if he was hypo (feeling funny), I didn't quite believe that and still don't. Its a worry, but its also worrying if he spends all night high. But what do you do, you can't be checking him on the hour all night.
    I paid for two sensors myself but we are getting them on prescription once we've attended a training session at the hospital, which will be in a weeks time. Even though the sensor stopped working after 4 days, we were still really impressed with it. You have to rub the arm with an alcohol wipe before applying, and I don't think I let it dry properly, so it was coming unstuck. His arm is quite red from when it was on him. We'll give it another go and see how we get on. I had heard a lot of negatives about the accuracy but I was surprised how close it was to his actual blood tests.
     
  17. Jayden2407

    Jayden2407 · Well-Known Member

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    Yes I wouldn’t have believed it either! Jayden has never woke up in the night while hypo to let me know, he sweats quite badly which is a clear sign to me he’s hypo. He is hypo aware while awake which is a big help, he knows as soon as he feels funny and lets me/school know.
    Exactly, you worry either way don’t you. If impressed with the sensors then it’s definitely worth another try isn’t it. I will look in to them for Jayden in the future. There’s so many different devices out for diabetics now!

    I suppose we’ll always be learning as our children grow up - and of course praying for a cure.
     
  18. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    I know you've commented on how your son really doesn't fancy the Libre at the moment, but I'd ask if he's an active lad, who likes lots of sport?

    Earlier in the summerre, I attended a Diabetes UK fundrraising event for Diabeteds Week, at our local garden centre. Whilst there a staff member engaged with me, and it transpirerd her son is T1, at around 13, if I recall properly. Anyway her lad is a very keen cyclist and found the Libre has really helped him fuel and manage himself forr much longer stretches on his bike that he could before.

    They're sold on it, even though their local CCG hadn't, at that point anyway, made the decision to fund any Libre use.

    Your guy sounds like he has his head screwed on and he'll come to his own conclusions whatever you think, but I'd urge him not to close the door on it, if he's offered a trial. If he didn't like it, he'd never have to have another go, but he'd have given it a go.
     
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  19. Jayden2407

    Jayden2407 · Well-Known Member

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    Hi,

    No unfortunately he’s not massively in to sports, he just likes the odd game of football with his friends. He’s out on his bike or scooter a lot of the time though.

    If he was offered one funded I would definitely make sure he trials it as I think he’ll be better off with one. I think it’s more that he doesn’t really understand how good they are compared to the constant finger pricking. I am going to speak to him again later to try and convince him :)
    Thank you
     
  20. Whirl2

    Whirl2 · Member

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    Hi
    My daughter was diagnosed last September ,she is 7. Some good days and some bad days like everyone really, she has been amazing though and does her own finger pricks and insulin while at school (she will at home to but is usually to busy to want to bother with it). Casie is using the libre sensor , unfortunately it's not on prescription in our area, she used to be aware of hypos in the begining but not much now, having the libre really helps. Its also helped in recognising patterns and what foods affect her the most and on the whole (other than special occasions ect) bed time highs have stopped and casie can have a stable night...... Just to stop the post breakfast high and crash now haha all fun .

    Sounds like you and your son have managed to get a handle on things early well done. X
     
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