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Newly Diagnosed Type1 parents to 5yr old :-(

Discussion in 'Greetings and Introductions' started by 649tom, Jan 7, 2021.

  1. 649tom

    649tom · Newbie

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    Hi all,

    Our names are Tom and Georgie and our beautiful little daughter Scarlett was rushed to hospital 2 days before Christmas.

    Sadly, but thankfully, she was diagnosed with Diabetes pretty quick and we just caught it before full Ketoacidosis hit. (think that's the correct spelling).

    She was put on a drip and dosed with insulin and after a couple of days in hospital we managed to get home for Christmas day.

    We've found the whole experience very difficult, daunting, heartbreaking, shocking, exhausting and just generally tiring. The only one who is doing great seems to be Scarlett. She's a little dainty softy but has not cried, complained or moaned once over her new regime, diet and continual injections. We're so proud of her!

    We're now starting to learn how to get her BG levels to remain in the 4-7Mmols range. Her BG charts still looks like the Himalayas still after 2wks.

    Any help, advice, tips or encouragement welcome here.

    xxx
     
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  2. Jaylee

    Jaylee Type 1 · Moderator
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    Hi Tom & Georgie,

    Hello Scarlett.

    & welcome to the forum.

    What insulin is prescribed for the youngling.?
    What means of blood glucose monitoring has been provided to assist with her care.?

    I'm certain your child will be brilliant.
     
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  3. VashtiB

    VashtiB Type 2 · Well-Known Member

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    Hi Tom and Georgie,

    Welcome to the forum. I'm a type 2 so no help to you at all but just wanted to welcome you.

    Parenting can be stressful enough without what you have gone through. Its must feel overwhelming. Children are often more resilient than we give them credit for.

    I'm sure more type 1s and parents will be here soon but have a read around the site and ask questions. People hear are only too happy to help and give encouragement.

    Take care of yourselves as well during this time.

    Good luck and welcome.
     
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  4. 649tom

    649tom · Newbie

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    Thank you for your reply.

    She's currently taking Novoraprid (Bolus) and Tesiba (Basal).
    Morning ratio 1:14
    Afternoon ratio 1:16
    Evening ration 1:24
    We're still getting a big morning spike above 20mmols every day.

    Her Basal is 4 units taken just before dinner.

    We have an AccuChek BG meter and have started carb counting already.

    We also have been using the Freestyle Libre 1 but we're finding it to be 3/4Mmols out when above 10mmols and about 1 to 2 mmols out when around the hypo range.
     
  5. Jaylee

    Jaylee Type 1 · Moderator
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    I'm glad you mentioned the L word. Great for filling in the blanks & spotting BG trends..

    Yep, the libres can be a little out from the meter.. Making sure you're suitably hydrated helps.
    They can be slower than the meter reads when comming up off a low? (Even a traditional meter can have a 15/20 minute lag?
    I can feel better long before the graph tells me I am. (Always back up any errant bloods with the meter.)
    To be fair, I use a third party app that I calibrate to my meter. With a Bluetooth bridge sent to my watch or phone. With alarms.
    The sensor I'm currently using is alright. Though I check. Haven't needed a calibration in 4 days..

    Though you can scan with these apps too.
     
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  6. Circuspony

    Circuspony Type 1 · Well-Known Member

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    Well I was 40 years older than Scarlett when i was diagnosed with T1d and my BG levels looked like a mountain range too at times - still do sometimes.

    Do you have a contact with your diabetic team? If morning levels start to show a pattern you aren't happy with them give them a ring and they'll help you adjust her insulin levels. I found a food diary massively helpful too. Morning was a challenging time for me until I changed my background insulin.

    Just remember to be kind to yourselves. Managing T1 isn't easy, we can't ever hope to replicate the pancreas and all of us just need to do the best we can and not aim for perfection!!
     
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  7. Wooly123

    Wooly123 · Active Member

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    Welcome
    I was 7 years old when I was diagnosed and it is a bit of rollercoaster at first, and I’ll have to admit still is at times but I am better equipped to deal with it now than I ever have been. I was on novorapid for a long time and never had any issues with it, changed over to Humalog a few years ago as was noticing large spikes after meals and doctor seemed to think it was worth a try. To me novorapid and Humalog are so similar there’s no point in me changing back.
    Like your little one, I seem to need double the amount of insulin for breakfast than any other time of day. If spikes are happening after breakfast it could be a good idea to inject a bit earlier at breakfast times so give it a bit of a head start. I do this sometimes if I have a high reading before a meal time.

    You mention carb counting. Have you got the DAFNE app at all? I sometimes use the Carbohydrates section to give me an idea how many carbs something has. I don’t have the Libre yet so the diary part is quite useful to record stuff, although it’s perhaps not the best layout.
     
  8. stillgoingstrong

    stillgoingstrong Type 1 · Member

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    Hi,
    I was 5 when I was diagnosed (62 now). I went into a coma. Not good but I recovered. My mother was the main care giver. My Dad tried but never really got it until he became type 2 in later life. Just try and keep to the rules. When you make a mistake try and learn what went wrong but accept that sometimes this condition does what it wants. Try to control the condition and don't let it control you. Easy to say but very difficult to achieve. Your diabetic team are the people to get to know and are the best source for specific advice.
     
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