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Endo Appointment:-(

Discussion in 'Parents of Children with Type 1' started by momoftwingirls, Aug 15, 2014.

  1. momoftwingirls

    momoftwingirls Approved members

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    Hi guys I haven't posted in a while. We had my dd endo appointment today and her A1C level was 8.5. Her endo wasn't happy with it and she said under the new guide she needs to be under 7.5. I am feeling so defeated because I thought we were doing okay. They even downloaded her numbers for the past 3 month and she said the numbers don't look that bad.

    I really dislike endo appointments it makes me feel bad. I really don't have a question just feeling down:-(
     
  2. Christopher

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    It is normal to feel down sometimes when dealing with this disease. Let yourself feel bad for awhile and then start doing something to bring down your child's A1c. Taking action will help you feel better. Did you discuss with the Endo any methods you can use to bring down her A1c? They should be helping you stratagize ways to do that.

    Maybe it is time to re-assess your overall management of her diabetes? Maybe be a little more aggressive with doing corrections when she is high? Do you correct at night when she is high? Doing that may also help to bring down her A1c. Just remember that over time a child's A1c is going to fluctuate. It is a normal part of this illness.


    It is challenging to be a caregiver for a child with Type 1 diabetes. Make sure you are also taking care of yourself. Give yourself breaks and make sure you keep things in perspective. Fit diabetes into your life, not the other way around.

    Good luck
     
    Last edited: Aug 15, 2014
  3. BarbDwyer

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    I'm sorry :(

    We have an appointment on the 21st. I'm anxious for it and dreading it at the same time.

    This (diabetes) is turning out to be kind of a lonely place. I hope you can do something comforting for yourself this week and that you have help in making a plan to move forward.
     
  4. nebby3

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    If the #s looked good but the A1c was higher than expected I'd ask if you are missing highs, either at night or post meal. Looking at those might be a place to start.
     
  5. momoftwingirls

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    Thank you guys for the kind words. We just have to be more aggressive. Most of the highs we have are due to lows that we corrected or spikes post meals. Once again thank you guys for the input I am feeling a little better.
     
  6. Snowflake

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    That's such a bummer! We've only had one A1c that came in where I mentally wanted it to be, and dd's is still somewhat higher than I feel it should be. So I'm not in a great position to give advice! Don't feel bad about yourself -- this is just a ridiculously difficult disease to get a handle on, and a lot is expected of us caregivers.

    If I were you, I would not focus on hitting 7.5 by the next appointment. I would focus on a manageable goal, maybe chipping off .3-.5, just making progress in the right direction, not achieving immediate perfection.

    How old is dd now? Are you able to watch the Dex and use it to head off between-meal and overnight highs, or is her correction factor too small for that? That was a complicating factor for us when dd was a toddler on MDI.
     
  7. momoftwingirls

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    She is 3 years old. We have actually got a lot of information on pumps so we have to do some research to see what will work for us. One of the problem we have iis the up and down of bs and it doesn't help that she is super picky eater. Meal time is not fun but she is getting better.
     
  8. Nancy in VA

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    When Emma was that age, we couldn't get her a1c down without a pump. We just couldn't be precise enough on dosing when they were that little.

    Since you have the Dexcom, I would encourage you to be a little more conservative with treating lows. Wait until the are under 80 and only give 5-7 carbs at first, and give it 45 minutes to come up before you retreat, unless you see major s dropping still and poke to see a lower number. When Emma was that age it took about 45 minutes to really see an increase in numbers after treating and it's easy to overtreat because they aren't coming up fast enough.
     
  9. KHS22

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    For sure I think pumping helps, especially for little ones, because of their erratic eating habits. Mine started on the pump at 3, and her A1C went down almost a full point (from 7.5 to 6.6) after starting. We also added the dexcom in there as well, which helps a lot.
     
  10. quiltinmom

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    I take it from your signature that you are dealing with a young kid--like 2 or 3, right? I think diabetes is a completely different thing with a child so young. I've been told that the target for my 12 year old is 7.5. Not necessarily realistic for a young kid especially if they don't recognize lows. 8.5 isn't all that bad I think. Do your best, as always, and remember that her a1c doesn't measure how hard you work or how much you love her. :)

    Also, My sons a1c went done right after we started pumping. I think partly because we can very easily and accurately correct a sort of high number (175) instead of waiting until he was more high, like 250. The pump was absolutely a game changer for us, lifestyle-wise.

    Hope this helps! You are doing just fine. :eek:
     
  11. missmakaliasmomma

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    My daughter's endo still says under 8.5. We just saw her two months ago. Maybe things have changed since then.
     
  12. susanlindstrom16

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    It's so hard to not let stuff like this get you down. You are doing a great job!! Diabetes is just frustrating sometimes.
     
  13. cdninct

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    Sorry to hear that you are feeling down. Endo appointments can do that to me, too, sometimes. Yes, 7.5% is the new guideline, but that is really hard to achieve with a young child. Were you given any helpful advice on how to bring it down, or were you just told that you needed to improve the number? If I remember correctly, you are post-bolusing her because she is an inconsistent eater--is that you? If you still need to do that, then my suggestions (for what they are worth!) are, 1) to start pumping as fast as you can as others have said, and 2) to focus on overcorrecting lows. What are you doing right now? I know that 15-15-15 rule that our endo kept insisting on for treating lows would send my DS into the stratosphere.

    Please don't feel bad--diabetes management is incredibly tough, and we (and the endos) have to appreciate that we can only do what we can do!
     
  14. Ali

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    Agree with all the posts. Tell your Endo to put his money where his/her mouth is. All of us would love a lower A1c, how do I get there!!! It is just BS to just throw it out to you with no real advice. Pumping for most of us does result in a big A1c improvement, over a year, not the first 6 months, but the flexibility in bolus, corrections and meal boluses is huge. But I would still harp on my Endo, make them earn their 1/2 million a year salary. (; Ali
     
  15. caspi

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    I'm sorry your endo wasn't more supportive. Your little one is only 3! It can't be easy to begin with and having your endo say she isn't happy with it isn't helpful. I agree with Nancy that it's possible to be more aggressive with corrections with the Dex. It's made a world of difference for us. I know it's hard not to feel judged by an A1C but it really is just one tool in our D toolbox. :cwds:
     
  16. Sarah Maddie's Mom

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    I know it's hard, but you really have to learn to push back when a Dr says. "it should be" without telling you how you might get there. With your daughter out of the room you need to be able to look the endo in the eye and say, "ok, what do you prescribe?" And don't be afraid to listen to their suggestions, think about how their suggestion would actually work or how it might raise other problems and bring all that to the table for them to help you sort out. It's not enough for the endo/cde to say "pre bolus" or "lower the ratio" or worst of all, "gotta get that A1c down". They need to understand, which they often seem to forget, that this isn't a controlled experiment, this is a kid.
     
  17. jenm999

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    Well said, Sarah. This disease has a steep learning curve AND you have a toddler AND you're not doing half bad! Be easy on yourself, ask for suggestions, get the Dexcom if you can, and feel free to vent here. :)

    (Practical suggestion: For us, the Dexcom allowed us to see what was happening between fingersticks and to compose meals more carefully to minimize after-meal spikes. If you bring down that 1-hour spike by 50 points just a few meals a week I bet you'd see a huge improvement without doing much else different. And by composing meals I mean adding PB or eggs or other protein-rich foods to slow down the absorption of the carbs. You can experiment with what works for your kid's tastes and eating habits. With the Dex you can also worry less at night and not feel like you have to run her high just to keep her from potentially going low - you'll see how she trends and tweak her dinner bolus/evening snack accordingly.)
     
  18. dpr

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    Sometimes I just want to tell our endo to come live at my house for week and THEN he can have an opinion. ;-) Don't worry too much about what your endo thinks.
     
  19. namegirl

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    I'm sorry your endo made you feel that way. Our endo would have calmly seen an A1C of 8.5 in our 3 year old as something to improve on, but also totally normal. We would adjust the settings on his pump, talk about things like avoiding over-treating lows, etc. and move on.

    Diabetes in a 3 year old is HARD! I second the other posters' advice about pinning down exactly HOW your endo suggests you lower the A1C.
     
  20. momoftwingirls

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    Thank you guys I love reading all your suggestions and they are very helpful. I am feeling better.
     

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