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Daughter newly diagnosed and first scary low!

Discussion in 'Parents of Children with Type 1' started by sey76, Feb 25, 2017.

  1. sey76

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    My 8 year old was diagnosed with type 1 about 3 weeks ago. Of course at the beginning her numbers were quite high and then finally about a week ago she started honeymooning. We've been going to the education sessions and learning lots. Her scale has decreased significantly due to her lower numbers. Luckily I work in health care and have been dealing with type 2 patients for a long time. This however is VERY different. The devil is in the details I am finding. Yesterday we were out for dinner (first time out of town for the night since diagnosis) I underestimated how much walking we had done I think and also made the terrible mistake of giving her her insulin dose prior to dinner being on the table. She is very good at detecting a low sugar and actually asked to have it checked while eating her pasta. It was LOW. 2.7 low. (Canadian) and was actually disoriented. She was able to take her own sugar but was in a complete daze. I of course over treated. 2 packs of rockets and the restaurant brought over apple juice. We got it up, took longer than I had wanted but likely time stood still and I couldn't wait 10-15 minutes to recheck. Anyway, it was a very scary scene and I am not used to it at all. My other daughter has a peanut allergy and I am used to having all the medical supplies with me. But have never had to jump to action with that before. I did have everyone on that we needed and feel very lucky that she was able to eat because I feel we were very close to that not being able to happen and would have had to use glucagon. Anyway, needless to say I did not sleep very well at all last night and will likely not sleep well tonight. She was absolutely fine about 30 minutes later back to her regular self. It just really is so very scare that they can get that way so fast. Just needed to vent I guess. Lots of lessons learned. So many more to go.
     
  2. Sprocket

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    Hello fellow Ontarian. I'm from near Kingston. Glad you joined us. I'm glad your daughter felt the low. Dosing times we find are totally dependent upon how quickly the carbs work. For pasta, we wait until halfway through to dose. We use Apidra and Novorapid (and Levemir). Apidra we find works better for fast acting carbs and novorapid better for lower glycemic, slower to act carbs like pasta. So much "live and learn" and "trial and error" in diabetes, but you learn how to manage a bit better every day. It will get easier over time.
    CGM's are being re-evaluated in Ontario to be funded (like pumps are). We paid out of pocket for ours and it's worth it's weight in gold to know where her blood sugar sits at all times. It will be a great relief when they finally fund it. I can't imagine being without it now - it's a total game changer for both my daughter (15) and I. If you're able to get one, I recommend it highly.
    This board has tons of very knowledgable people who deal with the ups and downs everyday. I've learned a great deal from everyone here and from resource books - likely moreso than from our health professionals.
     
  3. sey76

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    Im in London. Interesting...... waiting to dose halfway through when eating pasta. She is on Novarapid and Levemir as well.
    I have been trying to learn more about the CGM's because I feel like that would be huge for us. (And I won't wait till it is funded). I'll talk to our team about them and learn more. I'd be interested to see when they would recommend she get one since she is so fresh.
    Thanks for the info. I'm learning so much just browsing the threads!
     
  4. Sprocket

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    You don't need any kind of authorization or paperwork to get a dexcom if you're paying out of pocket. I just called Animas (Dexcom's distributor in Canada) and ordered it. The start up kit is about $1800 and includes the receiver you wear on a belt, pocket etc, the transmitter that sends info to the receiver and a box of 4 sensors. We make our sensors last for much longer than the week they say it will last. We just stop sensor and restart. We get about 3 weeks on average out of one sensor. Our starter kit receiver and transmitter was still going after a whole year.
    CGM's teach us so much - about how long the insulin is lasting, how well the insulin did, if your basal is set correctly and showing a straight line etc. etc. It also alarms when nearing a low or dropping quickly. My daughter hasn't had any serious lows because we catch them before they happen. It gives us so much more information than the glucometer - and we were testing 8 or 10 times a day.
    My daughter is on MDI and always has been - she has no interest in a pump even though our clinic has pushed her towards one for years. However, she wouldn't never want to be without her Dexcom.
     
  5. sey76

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    All great info. Thanks! Our clinic has said about 50% of their kids are on pumps. Totally individual. Pros and cons. We aren't close to thinking about a pump yet but for sure the Dexcom! My daughter plays competitive soccer and also does track. So we have been going through strips like crazy just getting a feel for when she goes up and down with what kind of activity. Before/during/after plus all her regular tests around meals etc. I wish I had stock in strips!
     
  6. Sprocket

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    My daughter plays basketball and she clips her dexcom inside her bra and it alarmed her a few times she was heading low. Great peace of mind.
     
  7. sey76

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    Looking up all the info online now. We are going to likely do this asap!!!
     
  8. Sarah Maddie's Mom

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    Can you still use deacon with a receiver? I didn't know this was still an option.
     
  9. wilf

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    We're a family from Hamilton Ontario here. Sorry you've had to join us, but welcome aboard. If you want more information than finger pokes can ever provide but are not independently wealthy then you might want to look at a Freestyle Libre. These are not available in North America yet, but there are workarounds that will get you one from overseas. There's a long thread on the Libre that I just commented on today, so you should be able to find it pretty easily.

    The first lesson with restaurants is to never give insulin for a meal until the meal has been served. If your daughter is honeymooning, then you'll be able to get away with that for awhile. Later on you'll want to get some Apidra which is faster acting than Novorapid.

    Good luck. :cwds:
     
  10. Sprocket

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    The G4 has the receiver and I don't believe the G5 is available in Canada yet. From what I read, we will stick with the G4 as long as possible because of the very short life of the transmitters on the G5 (3 months + or -). Not cool when you're paying out of pocket. Our first G4 transmitter lasted over a year before the low battery alert was seen.
     
  11. Sprocket

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    http://www.connectedinmotion.ca/blog/dexcomg5-canada/

    I just wanted to post this link for my fellow Canadians. It's a good comparison of G4 and G5 Dexcom's. I did some looking into it and Dexcom itself is distributing the G5 in Canada (as opposed to Animas distributing the G4). Looks like they have a nice subscription plan as well - including sensors every two weeks instead of 1. Compatability with android devices is coming soon. Right now the wearer of the CGM can only have apple products to be able to share the information with a follower. The G5 is looking better than I initially thought (when it hooks up with android)!
     
  12. sey76

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    Thanks! So much to learn. We are heading to South Carolina for the March break so I was at least glad we were able to experience some "lessons" last weekend while away. We will be going through a million strips I'm sure with swimming and warm weather etc etc. All news that need to be figured out.
     
  13. cdninct

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    Hello! I don't have much to add about dealing with lows that hasn't already been said, but I just wanted to say hi from Markham ON! My son is 8 and was diagnosed at 2.5 years old. Here's hoping ADP starts covering CGMs soon, because they are an amazing tool.
     
  14. cdninct

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    Dexcom G5 just arrived in Canada a couple of weeks ago, so most of us are still using the G4 with the receiver. I don't know about the US, but up here you can still buy a receiver with the G5--it just doesn't work with a G4 receiver.
     
  15. sey76

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    Hi Caroline. Thanks.
    I'm actually going to an information session on Wednesday night about the Dexcom G5. Seems like the kids will need their own cell phones to use it. But I'll learn more Wednesday.
     
  16. Sprocket

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    I have an interview scheduled this afternoon to speak to a person from Health Quality Ontario who is on the project to evaluate CGM coverage for Ontarions. HQO is the provincial advisor to improve health care in Ontario. I have my notes prepared and I am ready to give him all the reasons CGM's should be funded. Hopefully we're on the road to CGM funding in the near future!
     
  17. sey76

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    Good luck!!!! And thanks!
     
  18. Sprocket

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    The rep from HQO said the Ministry of Health requested a review of CGM coverage because of their increased accuracy and the approval to dose insulin based on their data with the Dexcom G5. The last review was in 2011 or 2012 and the accuracy of CGM's wasn't where it is today. They are submitting the report this fall to the Ministry. So hopefully there will be some good news after that.
     
  19. sey76

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    Thanks for the update!
     
  20. sroy

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    Thanks for all your efforts. Hope this goes well. We are also from Ontario and my son aged 12 has been using Dexcon G4 Platinum for 3 years now. We rely on it heavily.
     

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