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Daughter newly diagnosed T1-many questions!

Discussion in 'Ask A Question' started by MamaIzzy, Mar 7, 2021.

  1. MamaIzzy

    MamaIzzy · Member

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    Good Morning All,

    My 15 yr old daughter was diagnosed with T1 diabetes out of the blue almost three weeks ago, and after the initial shock and hospital stay we are now getting down to the business of managing her condition which I know will get easier but right now feels like a full time job! I have been quietly lurking on here for a week or so, reading posts and absorbing information, swinging between feeling informed and overwhelmed often simultaneously. I have so many questions to ask, I am not sure quite where to start, but here goes.....and many thanks in advance to any kind souls who have a spare minute to reply, your time and knowledge is greatly appreciated.

    -How long roughly should it take for her blood sugar readings to come in range? Does it vary wildly from person to person? Since her diagnosis on 16th Feb (and starting insulin) the same day she had her first reading below 7 yesterday morning before breakfast. Other than that she seems to sit around the mid/low teens with regular higher spikes. They are generally heading in the right direction from where we were in hospital (high 20’s) but I had the impression from the diabetes staff that a couple of weeks should see them in range?
    -Will these readings be doing her any harm in the short term?
    -Is there an optimum length of time to leave between injecting and eating?

    I don’t want to make this post too long so will leave it there for now. Many thanks!
     
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  2. urbanracer

    urbanracer Type 1 · Expert
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    Hi @MamaIzzy and welcome to the forums.

    We are all different and it can sometimes take a while to stabilise. I was diagnosed late in life and it took me about 12 weeks.

    There is some evidence to suggest that rapid reductions in average glucose levels may be detrimental to eyesight, so don't be tempted to rush it, you'll get there.

    When a person starts taking insulin, it can give the pancreas a bit of a rest, it might start squirting out some insulin of its own and this can make management of glucose levels more challenging. This is often referred to as the Honeymoon Period.
    She is unlikely to come to any harm during this period.

    The optimum time between injecting and eating varies from person to person, where on the body you inject, the insulin being used and possibly even the type of food being consumed. You can only find out how your daughter's body reacts by testing.
     
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    #2 urbanracer, Mar 7, 2021 at 11:05 AM
    Last edited: Mar 7, 2021
  3. Peter03

    Peter03 Type 1 · Well-Known Member

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    Hello and welcome, I was 16 when I became diabetic type 1, now 68, don't over worry with slightly raised blood sugers at the start, lows are more troubling at the start, hopefully your daughter will be put on a pump if not now soon with cgm, you both must have so many questions and of course there will be conflicting advice but you both will soon get the hang of things and your daughter will lead a normal life so tell her to enjoy being a teenager with just a very few restrictions and I mean a very few if any, and with modern technology her life will be very normal, I have had a normal life and when I was diagnosed well let's just say technology may have not been a word
     
    #3 Peter03, Mar 7, 2021 at 11:08 AM
    Last edited: Mar 7, 2021
  4. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    Welcome to the forum.

    I would agree with @urbanracer regarding a steady "decompression" stabilising blood sugars back to normal perameters.
    Going at it like a "bull at a gate" is not always the better strategy?

    The time twix injecting & eating as a rule of thumb is 20 minutes. However, that's all good on paper with the working profile of insulin. But it doesn't take into account the type of meal? Fats can slow digestion. Some other carbs digest faster. Some have a more delayed action. So experimentation finding where the peak of the insulins action is in conjunction with the ballpark we aim for.
    So a simple injection the same amount of carbs in two different meals may not have the same result on any given day?
    Even the same meal on a different day can vary, if you track the result over a few hours..

    It can be done, but don't feel deflated that there isn't "instant karma" straight away.

    What insulin/s is your daughter prescribed?
     
  5. searley

    searley Type 1 · Well-Known Member

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    Welcome. I would say nice to have you here.. But actually I wish no one had to be here.

    Anyway..

    There is going to be a learning curve everybody is different

    If she is in honeymoon period (still producing some insulin) then is will be slightly different to if she is not

    Diet/activity sleep/hormones will all make a difference

    For some/most women the month cycle will even effect control

    Make sure you have a supply of fast acting glucose.. Gluco tabs /dextrose tabs or even jelly babies. So that if you get the insulin dose wrong you can easily treat

    I assume you will now have a care team and point of contact for them.. Make use of it ask questions ask for training where required

    Here there is also many years of experience. Where you can ask question about any concerns you have
     
  6. 35yearsofType1

    35yearsofType1 · Active Member

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    Hi,

    I was diagnosed as a baby in the 80s and my mother did an absolutely amazing job of looking after me. She taught me that I don’t need to say no to anything and I can do anything with type 1 diabetes as long as I look after myself.

    I would really push for a pump - I got one in my early 20s when I was at uni and it was life changing and made my life much more flexible. This maybe a bit soon but there is a thing called looping (we are not waiting movement) - I would suggest you looking into it before you pick a pump as only certain pumps will work. I am about to start doing this this week but the movement and all the info was created by two mothers.

    Don’t worry about the highs at the moment all the complications etc occur when your average big has been high for years.
     
  7. searley

    searley Type 1 · Well-Known Member

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    I second a pump.. Changed my life
     
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  8. MamaIzzy

    MamaIzzy · Member

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    Thankyou! It seems the number of variables that can send the readings shooting up/down is huge and I guess we will get to learn these as time progresses. It feels like we are just about doing up our laces and walking to the start line in this marathon....

    She is on 24 units of Levemir in the evening and Novorapid for her meals (bolus??!)
     
  9. MamaIzzy

    MamaIzzy · Member

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    Thanks Mike d
     
  10. MamaIzzy

    MamaIzzy · Member

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    I would much rather she stabilised gradually if that means not harming her eyesight. She did start wearing glasses last year but I guess that may just be coincidental...
    The staff did talk about the honeymoon period in hospital. How do you know when the pancreas has finally packed up for good? Do blood sugar readings start running consistently higher? For the next month at least we have weekly meetings with the diabetic nurse/ consultant so I guess they will be keeping an eye out...
    At the moment she is pretty much eating as soon as she has injected because she is at home. Not sure it will be quite so simple once she heads back to school which is a whole other headache as she is a boarder. Makes my head explode just thinking about it....
     
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  11. MamaIzzy

    MamaIzzy · Member

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    Wow Peter that is good to hear! It is all just a little overwhelming at first, though I am so grateful for all the new technology around now which I am sure certainly makes life easier than when you were diagnosed. I think she will be getting a Libre 2 in a few weeks which should help, and then perhaps a pump down the line if she is interested. Now the initial shock has worn off she is just angry about it....
     
  12. MamaIzzy

    MamaIzzy · Member

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    CGM in a few weeks then perhaps a pump after that if she is interested. Glad yours has worked out well for you!
     
  13. MamaIzzy

    MamaIzzy · Member

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    Your mother sounds a total star! I am definitely emphasising the same with my daughter, though it is a delicate path to tread with a frustrated and cross teenager!
    I’ll definitely have a look into looping, I am intrigued. Must be good if it was created by two mothers! It must be so important to get the right pump to gain back some freedom and flexibility, and well done to you for having done so. She very much sees it as something she herself has to manage which is great, but she can be rather stubborn and not want to ask for help if she is struggling which worries me a little.
     
  14. MamaIzzy

    MamaIzzy · Member

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    Hi Searley and thanks for the welcome, though I totally get that no-one wishes they were here....

    I am just beginning to learn how many variables are going to effect her readings and that is what makes me slightly apprehensive. Given that we have been in lockdown since she was diagnosed (and the first week after coming home from hospital she basically slept) she hasn’t really done anything other than a few shortish dog walks. No time with friends/sports/schooldays to speak of and when all that does happen she will be thrown in a the deep end as she is a boarding school. Hence why I am a bit nervous....

    Her DSN seems very nice and is supportive about getting things in place at school re her meals being carb counted, as that is the area that concerns me the most. I have hypo kits in each car, at home and one to grab as we head out of the door. I’ll make sure they are dotted around school as well so she doesn’t have a 15 minute walk to get hold of one. I know we will get things wrong and mistakes will be made, it just feels scary that those mistakes can have an impact on her health. She has two older sisters and fortunately this is the first health issue we have ever encountered.
     
  15. searley

    searley Type 1 · Well-Known Member

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    A good DSN makes all the difference.. I had 2 good ones when first diagnosed 10 years ago

    Earlier this year when I started the journey with the pump I found that one of them was in the pump team she remembered me and made sure I had the pump and supplies I wanted as opposed to the one the consultant recommended

    Be nice to them.. Try to do as advised.. If you don't agreed discuss why you don't and they will remember it and help when needed
     
  16. 35yearsofType1

    35yearsofType1 · Active Member

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    Her sight won’t be affect at this stage at all. This is advice given when someone’s hba1c has been high for years as your daughter is type 1 not type 2 she will have literally only started having highs maybe a few days before she was diagnosed when her pancreas suddenly decided to stop producing insulin. Type 2 are advised when diagnosed not to bring it down too quickly as usually they have been diabetic/pre diabetic for a number of years as it’s a slow progression. This is where type1 and 2 are different. (Type 1 are advised this after a long time of high Hba1cs).

    A type 2 diabetic may have had high blood sugars for 10 years before being diagnosed hence the advice for those people is different at diagnosis. The best thing would be to try and sort out her control which obviously with the honeymoon period will be hard at the moment.

    Also like searley said - speak to your diabetes nurse - mine as a child became a long standing family friend - my parents could ring her any time for advice and I could now if I needed to!
     
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    #16 35yearsofType1, Mar 7, 2021 at 5:51 PM
    Last edited: Mar 7, 2021
  17. MamaIzzy

    MamaIzzy · Member

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    Great advice..the DSN she has now is very nice-will definitely keep her on side!
     
  18. MamaIzzy

    MamaIzzy · Member

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    Thankyou! Very pleased to hear her eyesight won’t have been affected. We have only met her DSN over zoom thus far because of Coronavirus and am looking forward to our meeting at the end of the month to establish the relationship further.
     
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  19. JMK1954

    JMK1954 Type 1 · Well-Known Member

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    A tube of glucose tablets in a pocket is all that is needed to fix a hypo or a few jelly babies (usually 2 or 3). In my view, if is always better to have the emergency glucose source with you. If you are hypo, you are likely to feel weak and shaky so immediately available glucose is preferable.
     
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  20. EllieM

    EllieM Type 1 · Moderator
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    Welcome to the forums @MamaIzzy, and I'm really sorry that your daughter (and your family) have to go through this.

    I was diagnosed at 8 and had the carb values booklet memorised pretty soon after diagnosis, so if your daughter is motivated I'm sure she'll soon be on top of things. At 15 it's good that she wants to take control, though I can only imagine how hard it must be for you to offer support in the background without being over bearing. And honestly, it's bad enough just getting through your teen years without adding a T1 diagnosis to the mix.

    But modern T1 treatments are fantastic. Getting a libre should make life massively easier, and a lot of people love their pumps.

    As regards the boarding school. will she be home at weekends? I'd hope you have a contact there who can liaise about the T1. (I actually went to full time boarding school between the ages of 10 and 12, but this was pre glucometers so all I had to do was inject, carb count, make sure I didn't go hypo and do a couple of chemistry tests a day involving a test tube, a tablet and some drops of urine. Kids were kept high in those days, so I almost never went hypo.)

    I'd encourage her to talk to her friends about hypos, so that she has people around her to help if she ever needs it. (Unfortunately one of the symptoms of a hypo is confusion, so though most T1s manage to grab some glucose while they are still compos mentis sometimes it can be hard to work out that that's what you need to do.) While at times I get deeply irritated by family members who are me solicitously "Are you hypo Mum?" because sometimes I'm just tired or sad or cross, I'm still glad that they ask. )

    Good luck. If she wants diabetic support for herself, she could get her own account on the forum. Virtual hugs freely supplied to any and all who want or need them.
     
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