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question about A1c goals and honeymoon

Discussion in 'Parents of Children with Type 1' started by kt_mom, Mar 3, 2014.

  1. kt_mom

    kt_mom Approved members

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    Last week we had our second checkup since diagnosis. The first was only a couple weeks afterwards so DD's A1C was still up around 12. This time it was 6.6. The doctor seemed happy with that, but said that they actually like kids her age to run a little higher around 7-7.5. With the CGM why wouldn't we want to shoot for a lower A1C?

    We asked about getting started on the pump and were met with resistence at first. I know they said in the hospital that they usually like to wait a year, but DD really wants to get started on one sooner. She said that DD could still have a honeymoon period and that her A1C already being all the way down to 6.6 makes her thinks that. But then she increased her lantus to 15 to help with the overnight higher numbers we've been seeing. She said her concern was a honeymoon period could reduce her insulin needs too low for a pump. She said something about 3 months out, but I had to remind her that we are actually closer to 6 months post diagnosis.

    Has anyone experienced a honeymoon period starting so late? I'm almost irritated that she said that in front of DD because DD was hoping to go into a honeymoon phase and not need much insulin for awhile. She had finally sort of let go of that and started dealing with the reality of this being her new way of life. I feel like a honeymoon period at this point would just put us back at sqaure one again down the road. Now DD has it back in her head that she could go into honeymoon which in her mind would make her "normal" again at least for a little while.
     
  2. MomofSweetOne

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    Do you have a CGM? Our endo isn't comfortable with A1Cs below 7s without one.

    The pumps dose tiny amounts of insulin. Combine that with a CGM, and there is research that shows that beta cells are preserved with tight control beyond two years past diagnosis. IMO, they're worth trying to preserve when studies are showing correlations between complications and amounts of c-peptide. My daughter still has beta function at 3.5 years, though I would not consider her in honeymoon. Her needs went up drastically at 6 months, but that's also when puberty revved up initially---and hit full-force 6 months later.

    Please assure your daughter that what is important is getting her the proper amount of insulin. Nothing else matters. Not how much other kids get, whether she has a "honeymoon" or not, just proper dosing. With puberty coming, her needs will be increasing like crazy and that's normal. Looking back, I'm relieved my daughter never got completely off insulin during her honeymoon. She did go off Humalog and down to 3.5 units of Lantus, but never completely off. I think that would be easier than getting up one's hopes and then having to go back on.

    I would call your insurance company to learn what their policy is, and if they'll pay for a pump now, insist that the doctor let you start. YOU live with D 24/7, not them, and they should work with you to make life as easy as possible for your daughter with D.
     
  3. Sarah Maddie's Mom

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    Well, there's a lot of confusing stuff in your post. First, if her A1c is 6.6 and you are seeing highs overnight then you must be seeing lows at other times. Are you currently CGMing? If so, is that the case? Usually, endos seem to aim for 7-7.5 because they don't want developing brains to be subject to too many hypos and most don't really (unwisely) differentiate between kids using cgms and frequent testing and those checking 4 times a day.

    On the honeymoon thing I think you were given sort of a strange expectation - honeymoon just means that you are using less than 0.5 insulin units per kg body weigh. Is that less insulin than your dd is currently using? A strong honeymoon may mean that a kid can eat a low carb snack without a bolus, but it might not.

    On the pump thing, your endo hasn't been keeping up. Pumps can absolutely be used by kids with low - way lower than a basal of 15u - needs.

    Sorry it was such a frustrating appointment. ;(
     
  4. andiej

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    I don't know if it helps any but my son is 10 and is 3 months since dx. He started his honeymoon around 2 weeks after diagnosis. He has 7 units of Levemir at night and 2 - 3 units of Novo Rapid at meal times. We find his readings are stable through out the day, typically around 5 at meal times like your daughter tends to read higher at night time (11-midnight for us) his daily average reading is about 7. He has had 3 A1C's at dx he was 14.5, 3 weeks later 10.5 and 2 months post dx 8.1 which is great considering this will still take into account the few weeks before dx. If things stay as they are i'm expecting his next a1c to be under 7. As for lows we get approx 1 minor low a week, usually a few hours after cross country running. I know there are some children that don't need any insulin during the honeymoon but Jack does, though he has uncovered snacks. I can understand why Endo's would worry about lows but for my son he can have very stable readings in range without experiencing lots of lows. I'm sure once we are out of honeymoon that might be a totally different situation.
     
  5. kt_mom

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    Yes we are using a CGM, we started on the dexcom in January. It's a great tool and has helped a lot to get a better idea of what's going on, but we still test before meals, before any corrections for highs or lows, at bedtime and over night if she goes high/low or out of range for a period of time or I just didn't feel good about where she was at bedtime or something.

    Sorry for the confusion, the nighttime highs just started in the last week or two leading up to the appointment. She's been shooting up into the upper 200's to 300 or so some nights. Long after mealtime as I've stopped allowing a snack after about 8:30. We do have some lows here and there, but I hadn't felt like it was a lot.

    DD is about 80 pounds and she is on 15 units of Lantus daily and her meal ratios are B 1:10, L/D 1:12. For snacks we do insulin for anything over about 10g so she probably averages between 12-18 units of Novolog depending on snacks.

    There was a girl DD's age in our support group that was diagnosed within days of DD. I think they caught hers early and she was "honeymooning" I guess. Her ratios were like 1:40 and so she could eat some meals with no insulin and I think that gave DD this hope of having a period of time where she could take little to no insulin and not have to deal with this for awhile. They haven't been in months though so I have no idea how her ratios are now.
     
  6. Sarah Maddie's Mom

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    KT mom, just FYI, I should have said - "I'm hearing some odd, contradictory things from your endo in this post" rather than "confusing". ;-)
     
  7. Christopher

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    Just wanted to suggest to try not to compare your daughter to other kids that have diabetes. There are so many variables that it is usually not helpful.

    As for the other child who had a 1:40 ratio and being able to eat meals with no insulin, I am not sure how that would work. If the meal was only 40 carbs, she would still need 1 unit. Even if the "meal" was 20 carbs she would still need 1/2 a unit. I don't know too many meals that are under 10 or 20 carbs. Maybe a snack?
     
  8. mmgirls

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    Many schools and endos will not bolus in 1/2 units, they will just do a correction later. I have seen it way too many times.

    I do also agree with Chris that it is not a healthy thing to compare insulin doses. We all do things so differently and basal/bolus ratio is not set in stone, many of us choose to tweak the number to get the results we are looking for. Each kid is built differently, has different activities , different stresses and may be in a different part of puberty/growth.

    There are many of us that had a kiddo that NEVER honeymooned, and I really hate that we were given that hope, to not have to dose for every meal, to be able to ease our way in.
     
    Last edited: Mar 3, 2014
  9. Dave

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    6.6 is great! Great job. Keep pushing - with cgm you can safely go lower. Getting into the high 5's and then low/mid 5's is extremely rewarding. Keep pushing for the pump - cgm and pump are an awesome combination because of the ability to microdose.

     
  10. MomofSweetOne

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    I am going to dare to disagree with this advice. Your endo is already uncomfortable with your A1C of 6.6. You're doing great! But, there is a point at which setting goals too low is dangerous. It's easy to get complacent and think we've mastered this beast, while as was pointed out on another thread, insulin can be deadly. With a girl that will shortly be entering puberty, if not there already, you are going to have swings of basal needs that will make you feel like you're barely holding on to keep from being thrown out of the most extreme roll-coaster you can imagine. I personally love the quote in Pumping Insulin about how puberty can bring even the best CDE to humility. Dave will never experience this with his boy, but I would far, far, far rather have my girl ALIVE with a good A1C rather than pushing for one that you'd be hard pressed to find any endo that would back for a child.
     
  11. Jeff

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    I will add my voice to those who caution seeking A1cs below 6. There is no evidence to support such a level except in pregnant women, and the increased risk of hypoglycemia when running A1cs that low strongly argue against it.
     
  12. kt_mom

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    Thanks for all the replies. I thought the 6.6 was a good number so it was kind of disappointing that the doctor wasn't as excited about it. Its not that I want to risk DD's safety and push her lower, but just that I thought she was doing pretty good and if so why not try to maintain it.

    I don't really know how it all worked for the little girl DD met at the support group meeting and they haven't been back. I only paid attention because DD did. All the talk of how she might have a honeymoon phase where her insulin needs would/could drop drastically and then she meets a little girl who's ratios are so big it made DD want that honeymoon phase even more. The idea that she didn't have to stress over every bite she put in her mouth all day everyday. I think I had finally gotten her to accept that she may never go through a phase like that and that we should focus on doing the best we can with the hand we've been dealt and find ways to make life as normal/easy/enjoyable for her as possible while keeping her as safe and healthy as possible. Then the doctor has to go and bring it up and say that she thinks that DD could/might still go into a honeymoon phase. It gives her false hope of something happening that I'm not sure she even understands correctly to begin with.

    At least she did say she would try to get DD into the next pump class but I'm going to call this week and check into it. They only have 3 or 4 a year she said, so I would imagine there would be one coming up soon. I'd really like to get started on the pump and get comfortable with it before we get into puberty.
     
  13. Christopher

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    Sounds like the "support" group may be doing more harm than good. Although I don't know the specifics, so maybe it is fine.


    Just reading some of your posts it seems like for a 10 year old she is thinking and stressing about this a lot. I know it is hard to control that but it is something to keep an eye on (as I am sure you know).


    You have a great attitude and hopefully she will take her cues from you.


    Sometimes it is helpful to have a private meeting/conversation with the Endo to let them know what expectations you have for the way the appointments go. It can be done in a collaborative way and doesn't have to be confrontational. For example, "I would prefer it if you would not comment about my child's weight in a way that makes them feel bad about themselves". Or "I have discussed complications with my child so you don't need to try and "scare" them to improve their compliance".

    If you really want to get moving on a pump I don't think you need to wait for the Endo to "try" and get her in a class. I am sure the people here who have gone through this can give you examples of things you can do to be proactive to get the ball rolling.

    Good luck.
     
  14. Sarah Maddie's Mom

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    And bear in mind people talk $hit.

    I've met other D parents who either didn't know what they were saying or were intentionally incorrectly reporting information about the kid's A1c, ratios, attitude etc etc
     
  15. Helenmomofsporty13yearold

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  16. Helenmomofsporty13yearold

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    DD's insulin needs kept dropping for the first 6 months following diagnosis. She was down to 1 shot of day of 1 unit of NPH mixed with bolus to cover breakfast by that point. She continued with only 1 shot a day for 3 years until puberty hit. She was an extremely active child.
     
  17. Junosmom

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    It is interesting to hear such different things especially from endo's. Our first appointment 3 mos. post dx, my son's A1C was 6.5. The dr. was very happy with it. We did have data from our meter, which should have shown much testing (we had to ask for a new rx for more per day) and we did not have many significant lows, though we did have some. Yes, he was likely honeymooning and not yet in puberty.

    At that appointment, we asked him for the pump and CGM, as he didn't bring it up. He agreed to both, as did our insurance. We are now learning more :) and more. Son is also entering puberty, and we're having to deal with the increasing basal needs and trying to figure this all out. I was glad to have had the pump experience before it hits the fan, which I repeatedly hear it will and soon.
     
  18. nanhsot

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    With CGM and no undetected lows, 6.6 is absolutely a wonderful A1C, great job!
     
  19. kim5798

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    I think that an a1c in the 5's is unrealistic and perhaps even unhealthy for a normal, active child. Review this post when you have been doing this for A LOT longer.
     
  20. mmgirls

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    Agree. Totally.

    I sometimes think that endo offices are not prepared for those of us that are willing to mind the CGM as a tool to attain a lower A1c while living an minimally altered life after DX.
     

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