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DKA and new diagnosis for 11 yr old daughter. Panic!?

Discussion in 'Parents' started by Moominpapa, Mar 14, 2021.

  1. Moominpapa

    Moominpapa · Member

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    Sitting here in a bit of a whirl/panic after 2 days of no sleep and an 11 year old in hospital, who we know know was in DKA and is now recovering with her brand new type 1 diagnosis.

    Illness in kids is hard right? but we've not encountered anything where 2 hours into the hospital hell they hand you a tonne of reading material and in the nicest possibel way tell you to dig in.

    Blood/glucose/jab school starts Monday morning at the hospital for my wife and i.

    Mind blown. Trying so very hard not to freak out for their sake and get a handle on what is about to begin...

    So thought it would actually be good to join a space of what i imagine is folk who have been through it?

    Hello. And thanks in advance.
     
    • Hug Hug x 3
  2. urbanracer

    urbanracer Type 1 · Expert
    Retired Moderator

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    Hi @Moominpapa

    Just thought I'd welcome you to the forums. It's a bit quiet around here at the mo' and I suspect you will get some other people stop by a bit later.

    Friends, relatives and parents usually worry more than the person with the illness and kids are remarkably adaptable so you can ease up on the panic mode although I'm sure it's easier to say than do.

    Yes, you have a lot of learning to do, so have a good read around the forums and don't omit all the information pages on the front end of the website (outside of the forum).

    Best wishes.
    Urb'
     
    • Like Like x 1
  3. Jaylee

    Jaylee Type 1 · Moderator
    Staff Member

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    Hi,

    Welcome to the forum.

    What can I say.. I was diagnosed as a kid. In my case I was generously give the summer break to acclimatise for September?

    Bite size chunks on the learning of the ropes..
    & as my mum would have said, you will have to manage it by yourself at some point, no better time than now.

    Best wishes.

    Your kid will be great. Feel free to ask anything.
     
  4. Heyrehair

    Heyrehair Parent · Active Member

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    It always feels a bit strange to welcome someone here as it typically means a newly diagnosed person.

    It can be challenging at times especially in the early stages where you are learning so much and adapting to different ways of doing things.

    Hoping you have a good supportive team at the hospital, and the school, as this will make the journey easier.

    This forum can be very useful for understanding the complexities of T1, but is also great for a listening ear or two.

    Take care.
     
    • Like Like x 1
  5. Moominpapa

    Moominpapa · Member

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    Thank you all. Much appreciated.
    Daughter is already ace-ing it, up and down but getting stronger.
    Its just feeling like a science project we must always get an A* in....
    Despite having not been in class.
    Im sure the mists will clear.
     
    • Like Like x 2
  6. Rokaab

    Rokaab Type 1 · Well-Known Member

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    Do note that with Type1, getting an A* often can be nigh on impossible, things do not always go to plan, and normally don't at the most annoying times, so you must let your daughter know (and you must accept) that getting it perfect is not expected, obviously trying to get it as good as possible is always a good idea, but as I say sometimes it will most definitely will not play ball.

    Even though it often does not play fair, there are quite a few of us who've had it for a long time now and are still around and still doing fine :)
     
    • Like Like x 2
    • Agree Agree x 2
  7. Moominpapa

    Moominpapa · Member

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    Thats good to know! thanks. We will settle for a B minus!
     
    • Like Like x 1
  8. Fruitbat09

    Fruitbat09 · Newbie

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    Just joined and this was the first post I read. It was like I had written it.
    Hi. We went through exactly the same with our 11 yr old son 3 weeks ago so I know exactly how you are feeling. It has certainly been a very fast learning curve.
     
    • Hug Hug x 1
  9. UK T1

    UK T1 Type 1 · Well-Known Member

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    Hi both, hope things are settling a little?

    I was diagnosed in my early teens while I was DKA. I can only imagine what my parents went through. I know everyone is different, and I have had the classic 'why me' thoughts over the years, but I feel I handled the diagnosis better than my parents. Key things for me were to realise that there hadn't been a known prevention, neither me nor my parents could have prevented the diagnosis, it wasn't our fault.

    I also had no reason to stop it from letting me live my life how I wanted to live it. Yes, it was a steep learning curve at first, but I felt that learning more enabled me more freedom again more quickly. This site is great so do ask any questions you have!
     
    • Winner Winner x 1
  10. MamaIzzy

    MamaIzzy · Member

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    Hi there Moominpapa,

    I hear you! My 15 yr old daughter was diagnosed out of the blue last month and I go from feeling on top of things to completely overwhelmed on an almost daily basis. The learning curve is pretty steep but it is amazing how quickly the new regime becomes second nature. But then the real fun begins...conversations with insensitive consultants (hopefully you won’t have that one!) and working out how it will all fit in once life returns to some normality and they can start seeing friends/ going to school etc. I know my daughter will work it all out but some days I feel like I am walking across a minefield. Navigating the path between being supportive and working out the best food and diet to keep her blood sugars as stable as possible and keeping her healthy, against what she wants to eat and how she wants to live as a teenager feels a lonely place some days. We’ll get there. Good luck to you and your daughter, I wish you the smoothest path possible!
     
    • Hug Hug x 2
  11. Moominpapa

    Moominpapa · Member

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    Thankyou all.
    Daughter is already being a legend on the jab department, and the manic hunger after her DKA is subsideding.
    Luckily, School and follow up team at hospital have all been incredible so feel very supported which i think has been essential.
    Moved from fixed doses to carbcounting now, and numbers are acceptable. We can see whcih dots to join now even if the regime is a little full on.
    Still no "hypo". we have skimmed low blood/sugar but daughter not experienced one enough to comment on.
    Once again, many thanks. Its good to know other folks experiences and hear from those who are just beginning this.
     
  12. Dad2type1

    Dad2type1 · Member

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    Hi
    I’m in same situation, daughter of 9 got taken to hospital Wednesday night and still there,

    And had to be taught a lot of stuff that initially went over my head as I couldn’t come to terms with it ,and worrying if I get it wrong

    I feel like her little world is over but Iv read a lot of people on here that have said it will be fine

    I’m here for anyone that needs to talk
     
  13. Moominpapa

    Moominpapa · Member

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    We have arrived at "Hypo Central' over the last few days - 5 yesterday! Will be dialling up the Novarapid when we speak to the clininc next.
    We have begun carb counting and im guessing the honeymoon period means things are harder to lock down.
    Daughter doing well, just really trying to mix up the Hypo snacks!

    OJ seems to be the quickest/easiest of a full fat coke is off the menu. Jellybabies rule at school.
    Any other favourites folks? Also what about the "after" slower/starchier snack when the levels are up over 4?
     
    #13 Moominpapa, Apr 2, 2021 at 11:12 AM
    Last edited: Apr 2, 2021
  14. UK T1

    UK T1 Type 1 · Well-Known Member

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    Hi, I found carb counting really helped me reduce my hypos and let me eat what I want again. The initial weeks after I was diagnosed where I was on fixed doses meant I had to eat fixed carb quantities I often just didn't have the appetite for. I wondered why youre choosing to increase the novorapid if she is having lots of hypos?

    I always have glucose tablets in my testing kit as back up because they don't take up much space, but I don't really like the taste so only use them if I absolutely have to!
    Little cartons of juice have always been a favourite for me if I'm out and about. At home you just want anything with high glucose content, low fat/protein/fibre etc. so I like dates if I'm not very low. It depends on how low I am as to what I choose. Maybe fruit or gummy bears, also mini eggs were effective when I was hovering around 4 yesterday!

    The situation and degree of hypo then informs what sort of follow up starchy carb I go for (if any). Something like oatcakes, cereal bars (careful, some are just sugar!) and crackers I find good to have in bags just in case, especially as they're not as easily damaged by heat and tend to have longer use by dates (just like the glucose tablets). Hope that helps a bit.
     
    #14 UK T1, Apr 2, 2021 at 1:38 PM
    Last edited: Apr 2, 2021
  15. Moominpapa

    Moominpapa · Member

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    Thanks UKT1. After the initial shock of it all, the carb counting is letting us return to a normal menu quite quickly within reason which is great relief. We are NOT increasing anything without the Hospital team looking at the numbers, i was just wondering if that will be the outcome at our next weekely review.

    Oatcakes of all flavours have become a staple!
     
  16. UK T1

    UK T1 Type 1 · Well-Known Member

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    No worries, I wish I'd had something like this when I was diagnosed! My diabetes centre had an out of hours text service which was great when you didn't feel it was enough of an issue to need to ring about. There are so many factors which could cause a hypo, but good to have options to treat them so you don't just get tired of always having the same things. Are there any patterns you can see to when she is hypoing? Does it happen within 4-5hrs of the novorapid for example (this is how long novorapid can stay in the system for), or before eating anything in the morning, if you do notice any patterns these would be useful to discuss with her team.
     
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