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Newly diagnosed: hypos, monitoring and carbs.. oh my!

Discussion in 'Parents' started by h4kr, Oct 17, 2017.

  1. h4kr

    h4kr Type 1 · Newbie

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    Hi,

    I am a dad to my 8yr old daughter who was diagnosed 3 weeks ago. Feeling kinda overwhelmed, bit of a learning curve!
    Last week we had multiple hypos because her insulin was too high - eventually resulted in her collapsing and fitting followed by unconsciousness (and 3 more days in hospital). The insulin levels were absolutely fine for the week before - if anything we were still running high.
    I understand this is the 'honeymoon period' and her pancreas can still be producing after food - as such we have now halved her dose and are running high (dosing advised by our diabetes team).
    I have been so paranoid since the low last week that we were blood testing every 3 hours.. fortunately we moved to libre yesterday so saves her poor little fingers from the stress of 10-15 pricks a day.
    I am really surprised that there are no more 'high tech' offerings in this space? Like remote monitoring at night time using the sensors (hypo alerts for instance).
    We have started carb counting today too... I have read that pumps are not used in early diagnosis as you need to be able to correct and carb count/etc.

    I know there are a lot resources out there, but does anyone have any views on pumps for children, hypo/night remote monitoring and alerting? Or am I being too paranoid because of one event?
     
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  2. catapillar

    catapillar Type 1 · Well-Known Member

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    There are. Theres a dexcom G5. A continuous glucose monitor (cgm) that can send readings to any iPhone. Or a guardian CGM which I think only sends readings to 1 phone (I've not used one so not sure how it works) and uses the same sensors that would link up with a Medtronic 640 pump which would suspend insulin delivery if it thought blood sugar was dropping.

    I believe @Scott-C may also have advice on kit that can turn the libre into a CGM - I think it's called blue-con? But I'm not entirely sure...
     
  3. therower

    therower Type 1 · Well-Known Member

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    Hi @h4kr . Welcome to the forum. Such an awful situation to be in, seeing your daughter having a bad hypo. Things will settle down and become easier in time. Honestly.
    As catapillar has pointed out there is a lot of gadgetry to be had now days.
    Hopefully Scott-C will get in touch, he's set himself up with what appears a very good monitoring and alerting device.
    Good luck to you and your daughter.
     
  4. helensaramay

    helensaramay Type 1 · Well-Known Member

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    Sorry to read about the troubles your daughter is having.
    I tend to think of my diabetes like a young child I have with me all the time: some times they are loving and play well; the suddenly, out of the blue, they have a tantrum or decide to be mischievous. Your post reminded me of this and allowed me to add another strand to my analogy: that toddler who decides to play up when they are somewhere new.
    @catapillar and @therower have provided you with the information about CGMs and converting the Libre to a CGM with a blue-something.
    I have spoken to parents who rely entirely on the Libre for BG readings and insulin doses. However, I would be nervous to do this as the Libre is not always accurate. Some people have reported that pressure from lying on it may result in low readings. I think the Libre is a great idea for reducing finger pricks but if you have a chance to experiment, I would check out the accuracy now and then.

    You also mentioned pumps. I have been a pumper for nearly 2 years. I have found it gives me better control than injections but it has taken some time to get used to. I may not be a child (although some may say I act it at times) but it makes sense to work out insulin doses and master carb counting before progressing to a pump.

    In my experience, the amount of information you are given with a new diagnosis is overwhelming but it starts to make sense over time ... in time to learn something new.
     
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  5. fletchweb

    fletchweb Type 1 · Well-Known Member

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    You're not being too paranoid - your a parent of a type 1. My parents were dealing with me when I was diagnosed at 4 yrs old and as I was the first known person in my family to be diagnosed (many have since) my parents were clueless as to what to do - as well the technology was not as advanced back in 1966.

    I too went thru a honeymoon period like many Type 1s and was rushed to the hospital more than once until my parents figured out how to best handle it. The big difference then as compared to now - back then the goal was just to stay alive - tight control was an unknown at that time as most type 1s were just on one shot.

    Tight control seems to be the norm in the philosophy of the majority of Healthcare professionals today. I suspect this will likely increase the risks of hypos among their patientws - particularly when you're in a honeymoon period.

    My suggestion - don't worry if they run a bit high - if your daughter is in a honeymoon period it will pass and things should start to become a little bit more stable and predictable. As well - I've met type 2s with Helper Dogs wsho can sense thru a persons odour /breath whether they are experiencing extreme highs or lows. Don't know how reasonable that is where you live but as a kid I would have loved to have had a helper dog, although they did not exist at that time in regard to diabetes - they do now.

    Also my parents (we lived in Canada) attended and became part of the local chapter of the Canadian Diabetes Association (CDC) and were a great help in regard to support and education. You might want to look to see if such support mechanisms exist in your area.

    And finally - try not to worry too much! Hell - I didn't know what I was doing most of the time but have experienced a better life than most people because I didn't let my condition prevent me in doing what I wanted to do - (still to this day) There are a few other people on these forums like me - try not to worry too much.

    All the best
     
    #5 fletchweb, Oct 17, 2017 at 1:38 PM
    Last edited: Oct 17, 2017
  6. h4kr

    h4kr Type 1 · Newbie

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    Thanks a lot. This really helps! Kinda thought pumps were for when we have ‘mastered’ this thing ;)
    Have searched the forums and found bluecon too.. will read into that :)
    Again, thanks for the welcome and info.

    H4
     
  7. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, @h4kr , T1 is never going to be a walk in the park, but cgm makes it a lot easier, so definitely pursue that route. Strips are just giving you a little snapshot of a moving target, but cgm shows you the whole picture over 24 hours so it is much easier to spot hypos and hypers developing and do something proactively to tail them off before anything unpleasant happens. I've avoided plenty of hypos just through keeping a careful eye on my libre.

    Dexcom is certainly worth looking into because it'll give you a lot of peace of mind by waking you up if levels are dropping too low and you can remote monitor when she's at school. The set up and ongoing costs can be quite high if used as per the makers instructions i.e. one sensor every seven days, but there are ways of restarting it to get longer use which can bring costs down to a level where they're comparable to libre. I've not used dexcom, so will leave it to others to fill in the details. I believe dexcom sometimes offer a free trial run, so maybe worth contacting them either directly or through your dsn to see how that works out.

    Catapillar and therower tagged me re the blucon/xDrip+ kit I'm using to make libre act as a cgm. I did a post about it here which gives some details about it:

    http://www.diabetes.co.uk/forum/thr...h-libre-blucon-and-xdrip.127195/#post-1575850

    I'm very happy with it - wakes me up if I'm dropping too low, gives a reading every five mins, predictive lows, calibration - pretty much everything dexcom does for a one off cost of £100. Heck, the xDrip+ part of it is actually what a lot of dexcommers use anyway. It can be set up with Nightwatch for remote monitoring but I've not looked into that so can't offer any help on that.

    But I would add a major qualification/caveat to this route: dexcom is an integrated system, whereas libre/blucon/xDrip+ is an amalgam of products from three separate groups, one of which is a small start up, another of which is openly stated as being a personal research project. Your hospital would undoubtedly have no difficulties with you using dexcom, but would likely express doubt about lbx. It works for me, but then I'm a grown adult who has made a judgment call that I'm prepared to use what might be regarded by some as a bit of a Heath Robinson solution. I made that decision because blucon is just a small transmitter and the real workload is done by xDrip+ which is highly regarded by cgm users. When it comes to making a decision for an 8 yr old though, using something established like dexcom is likely the surer route if you definitely want hypo alerts and remote monitoring.

    There's also the practical aspects. Because both dexcom and libre/blucon have transmitters to send the sensor signal to the phone, they sit prouder of the skin surface than libre alone, so, depending how active she is there's a slightly higher chance of dunting it around and knocking it off in the play park or whatever.

    Best of luck to you and yours!
     
  8. h4kr

    h4kr Type 1 · Newbie

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    Hi scott-c, very informative, thank you! I know it’s early days for us, but I’m a big technology fan/adopter so was hoping there would be solutions that would make life easier for her. Will look at both the Dexcom and the blucon route.
    H4
     
  9. catapillar

    catapillar Type 1 · Well-Known Member

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    In newly diagnosed adults they do seem to prefer waiting at least 12 months post diagnosis before considering a pump, but they are pretty open to or even keen to get newly diagnosed children on a pump. The difference would be that the honeymoon in children is not really likely to be long or strong, it's likely to be swiftly over. But a honeymoon in an adult can be longer lasting.

    Pumping can be preferred for children who might be on very small doses of insulin. The smallest increment you can get on MDI is 0.5 units, on a pump you can get much smaller increments of 0.05 units.

    You do need to be able to carb count to use a pump. You can learn about carb counting here - https://www.bertieonline.org.uk

    It would also be helpful to have got your head around how insulin works - things like the correction factor, and duration of action - if considering a pump.
     
  10. Angusc

    Angusc Type 1 · Active Member

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    if worried about hypo's the Medtronic 640 is useful as with the CGM it can suspend insulin delivery for up to 2 hours or the BM rises above a set point which is very useful
     
  11. bobcurly

    bobcurly Type 1 · Well-Known Member

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    Yes h4kr had the same thing with my 9 year old (x3 admissions with fitting). Now have cgm and pump - medronic 640 and enlite sensors that switch off pump when crashing down and audibally alarm too
     
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