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I could use some reassurance,or btdt

Discussion in 'Parents of Children with Type 1' started by wearingtaci, Oct 26, 2013.

  1. wearingtaci

    wearingtaci Approved members

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    We are having the full diabetes experience. Soph is starting puberty and most likely the end of the honeymoon at the same time.I try to avoid looking at the estimated a1c part of my tracking app,but tonight I saw it. I know it is just an estimate,but is says 7.6,which is a huge jump from her last one of 6.2. We are doing most everything the same,except Sophie doesn't want to bring lunches to school anymore,so we let her eat school lunches and they are way higher in carbs and sugar then the meals we eat at home. I don't limit carbs,but we eat a lot of veggies and not a lot of processed foods.
    We are ready for a pump and cgm and I know that will help,bit this feels like a major blow to have the a1c jump this much and of course I worry about the long term effects of an a1c this high
    Tell me I'm crazy and others have fought this battle too
     
  2. nanhsot

    nanhsot Approved members

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    My son has ranged from 10+ at diagnosis, to 5.9 during honeymoon, to 8.6 during puberty (and a broken leg) and everything in between. Right now, in college, with lots of stress and craziness, he's a 6.6. We've only been at this less than 4 years, so it's been up and down and all around in a very short time.

    It's a marathon, not a sprint. Read and repeat. It's going to be OK. You are doing a GREAT job. 7.6 isn't horrible. It's really not.

    Just keep pushing, keep working, keep living your life. It's going to be OK, even if you see a 7.6 We saw that and higher, and then it went down again. Puberty and all it entails is not for the faint of heart, even for the non diabetic!

    I am personally convinced you can do every little thing right and still see higher numbers. It simply is a difficult disease and difficult time. Just keep going.
     
  3. wilf

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    Never mind the A1C - just work on each day's blood sugars and the A1Cs can take care of themselves. Let her live a normal life so she's at peace with herself and her food and her diabetes and her body.

    The healthy food at home is excellent! :)

    Night time is key during puberty. You can make up for a lot of wild day-time swings if you get a handle on the nights, so they are worth some extra measuring and thinking about.

    Good luck! :cwds:
     
  4. nebby3

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    I agree--just do the best you can every day. 7.6 is good for puberty and for no longer honeymooning. You may have been a bit spoiled by the honeymoon ;)
     
  5. missmakaliasmomma

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    I agree with this. When my daughter was honeymooning we were never told her a1c ( I don't think) and that might be why. They probably didn't want to freak me out with the jump I would eventually see. Now that we get her a1cs regularly, they are between 6.6 and 7.1 usually. Well its usually 7.1. Its never been less than 6.6. No puberty here yet, I'm pretty scared of when that time will come.

    To me, an a1c in the honeymoon period isn't something to base future a1cs off of because it only lasts for such a short time. If you could keep it at 7.6 during puberty, I think that's pretty good. As for the food at school, I get that you don't want to limit her but you also have to think of her health. If the processed food at school is wreaking havoc on her BGs maybe limit school food to 1-2 days a week. My mom is a teacher and she says that the school food is gross anyway. My daughter brought up that Friday is pizza day once and I told her that the pizza doesn't taste anything like the pizza she's used to eating lol. When I was at school, pizza day had probably the least amount of buyers.

    Or maybe you could send her in lunch to match what the school is serving? If you make chicken nuggets yourself, she could bring them in when everyone else has them at school? Tacos, etc? I imagine I will have this issue with my daughter too when she gets to your daughter's age. Right now, she doesn't press it too much.
     
  6. wearingtaci

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    I got my reassurance today from the CDE at the new Endo's office. I feel much better tonight then I did this weekend
     
  7. quiltinmom

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    Oh yes! We used to have a nice 6.something a1c. Now I'm totally happy with 7.somethings. His last one was 7.2 I think, and his endo said he was a rock star. :) His a1c before that was 7.6. Really, it's not awful. Not as good as I'd like, but we really are doing our best.

    It's very rewarding when it's a "good" a1c and we like to congratulate ourselves (and we should!) but when it's higher than we'd like we have a hard time not blaming ourselves for it. It's easy to say "just do your best" (which I am sure you're already doing it) but it can take time for it to really sink in. You have to weigh in quality of life (cake at a b-day party or candy on Halloween or eating hot lunch at school or whatever) when you think about what is a realistic a1c you to go for. There are so many variables that are totally out of your control, especially during puberty, so many more unexpected highs that you can't explain, so many more ratio/basal changes, etc. It's hard to keep up and to know if something needs to be tweaked or if it's just a diabetes curveball. Just do your best. That's all you can do.

    Personally, I would rather have a little bit higher a1c now and have him develop a positive attitude toward diabetes care in general (i.e. not have diabetes stop him from doing/eating what he wants) than to have a perfect a1c and have him hate diabetes. Better a few years now than may years later on as an adult (where I can't help him take good care of himself).

    I've never used an app that estimates a1c, but chances are it could be way off. For example, if you recheck every high number, it will throw off an estimation. The number of night checks you do may also play a part. Don't forget about that.

    Just so you know, after he got his pump his a1c went down a bit, because we were finally able to correct for those "not high enough to justify an extra shot" highs. And pumping for a constantly eating pre-teen will be a total game changer for you, for the good. I hope you can get a pump soon! :)
     
  8. wearingtaci

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    .........and after all that her A1C was still only 7.2. What seemed like everything going sideways to us was"diabetes,just being,diabetes"according to the endo.
    We go back next week to play with pumps and make a final decision
     
  9. danielsmom

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    Daniel turning 13 tomorrow is not quite out of his honeymoon yet after 2 years. But his a1c has been creeping up to mid 8's. The last time I cried at the appointment because I felt like the failure that couldn't make it just right. But I was assured that it was not my fault. Diabetes just sucks. With sports, games, exercise, school food, everything into consideration there is going to be that fluctuation. And Daniel is not quite yet in puberty. Overall his weight is good, his checkups are good. He couldn't be anymore active than he is. His food choices are still not the best because of his pickiness but we have added new food since last summer so that is just a work in progress. We too are planning on pumping soon. All I can do is take it day by day. I am not getting beat up by the doctors, so I shouldn't beat myself up either when I know I am doing as much as this disease will allow at any given time. Hang in there.
     
  10. Darryl

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    A1C is only one of the factors in long term effects, the other are peak BG's, variability, and of course, severe lows. It gets much harder as you get into the teenage years. I recommend a CGM as a starting point, it will make it possible to know immediately when BG starts heading out of range so you or your dd can take action immediately. Just steering BG back into range as soon as it heads out range gives far better overall control than a BG check every few hours. A pump is also helpful in administering the insulin, but any form of insulin delivery works well. We've used both from ages 8 through 15 and these have enabled our dd to head off countless BG excursions both high and low.
     

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