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I dodn't want to Hi-jack another thread. Please answer this...

Discussion in 'Parents of Children with Type 1' started by Heather(CA), Jan 4, 2011.

  1. Heather(CA)

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    Do you know anyone who's child has Type 1 diabetes that achieves A1c's between 5.3 and 6.5 with very little effort. I know with type 1.5 it's probably possible for a period of time. I'm talking Type 1 for many years....Please tell me if you do know someone, and if you don't. Thanks :cwds:
     
  2. Tuff

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    Hi Heather - Okay so the boy we are talking about is 14. That means he is in puberty and still is maintaining these numbers. He is on injections but not Lantus. He mainly looks after his diabetes himself. He was going to go on the pump in the summer but changed his mind as he is worried that it would change how well things already are for him. I tend to agree since I would be scared to mess with those numbers too :) He eats incredibly healthily and sticks to his alotted carbs. All I can figure is he is very lucky. He is extremely mature for his age also.
     
  3. Flutterby

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    Nope. Can't think of one.
     
  4. Heather(CA)

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    OK so he is on a specific amount of carbs? That would make things easier, does he play sports? Sports would make things harder. Are you sure he has type 1? How do you know his A1c's are really that good? Could his mom be fibbing?:cwds:

    If not Lantus what? Levemir(sp?) maybe?
     
  5. Tuff

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    He is very active with sports like volleyball and basketball. He feeds for activity. I don't know his set carbs but he sticks to it and doesn't seem to mind not eating other things. My oldest son has gone to school with and been friends with him for several years. They go to the diabetes walk every year. I have questioned his Mom about the A1C's and told her it is not the norm. I also told them to watch out for changes in puberty and still he is breezing through. This boy is extremely smart in school and takes his diabetes and his diet seriously. I think they are truly just lucky. I know when my son was on injections the numbers were all over the place as much as they are being on the pump. It just isn't fair and makes me feel like I'm doing something wrong. I'm sure they must think I'm doing something wrong too when they hear me talk about our highs lows and complications. Insulin is NPH and Nova-rapid.
     
  6. TheFormerLantusFiend

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    I met somebody with a young child dx'd half his lifetime back who was still honeymooning and had A1cs towards the bottom of that range.

    I met somebody else who is my age, dx'd as a preteen who was absolutely baffled when I said managing diabetes took energy. I don't know what his A1cs were but his reaction has really stuck in my head. Our mutual friends had been telling us for a while we should meet each other, without telling either of us why, and when I saw a guy with a pump on who could only be him I was excited... but it was kind of a let down. We had a lot of labels and demographics in common but not a lot of experiences in common.

    I would not disbelieve a person who said he had type 1 diabetes and those A1cs with no effort. If I have learned anything from my medical reading, it is that unusual people abound.
     
  7. Tuff

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  8. Heather(CA)

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    What your describing is pretty intense. The insulin he takes required the same carbs and eating at the same times of day. That would not be easy for my son. You are not doing anything wrong. This regimen is a choice for this boy, not a bad choice if he's OK with it. He IS making big sacrifices with his diet. I doubt most teenage boys are ok with that kind of schedule, and to force them would be wrong. Does that make sense? My son had as much success on shots as the pump, I don't think it makes that much difference. JMO:cwds:
     
  9. lisab

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    An old school friends son, who is now 20 and diagnosed at 7 yrs of age, has always had A1c's in the low 6's. Has never weighed or carb counted....just guesstimates dosages......4 injections a day of Novo at meal times and Lantus at night. He only tests an average of 4 times a day. He has very few lows and is rarely high. He has done the majority of his own care since he was 8 years of age. She was completely baffled with my version of diabetes care and how hard we strive to keep Yasmine within range as best as possible. I ran into her a few years ago.....and I was the first parent of a child with diabetes she had met or spoken to since her son was diagnosed! Could say I was feeling just a little envious....that things have seemed so easy.
     
  10. Mary Lou

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    I had a friend who made similar claims and for the longest time I compared her situation to mine and ended up feeling like I was doing a bad job. So I talked to my endo about it and she called bullshit. (can I say that?) She said that it just isn't very likely, and is more likely that the friend was selling me a story for whatever reasons she felt that she needed too.

    Now, my endo doens't know this family, but it made me realize that even though someone may be totally great, this is an area that makes a lot of people uncomfortable.

    I no longer ask about her child's A1Cs and when she offers I actually do wonder if she's being honest. I care a great deal about her, and I think her son is terrific, but when I actually watch his numbers when he's with us, I realize that there's no way his A1C is what she claims.

    I'm not saying that this is what is going on with this other boy, I'm just relating my own experiences.
     
  11. DadCares

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    Our best A1C was 6.5. She is usually 6.8 to 7.1. I don't know anyone who achieves below a 6.5 with their child, other than maybe once. Maybe it is possible your friend has great A1Cs. We should all feel good for this other child (if true) that there is a child whose body is facing a lesser battle. But that is irrelevant to you. The only question for you & me... Are we doing the best we can do to aggressively keep BGs close to range? Is there something we can learn from a friend that might improve our daily strategy? If so, good. But, in this case, highly unlikely.
     
  12. wilf

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    DD's A1Cs have pretty much all been in the 6's since her honeymoon ended (they were in the 5's then), but it is certainly not easy. We work hard at managing the diabetes. DD's BG levels are measured 10-12 times daily, and we have a complex MDI regimen using 4 (sometimes 5) different types of insulin. On a good day, DD needs 3 injections but on a rough one it can be as many as 5 or 6.
     
  13. thebestnest5

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    Yes, I do. Yes, it's not the norm. No, they weren't dx'd as a young child.
     
  14. ecs1516

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    I know one. Diagnosed as a young child. 6.0 A1C's not much effort it seems. Baffles me how you can have so many in range numbers without lows but that is what the mom says.:confused:
    We on the other hand is on the other end of the spectrum from that right now. ;)

    I also had a friend that had two diabetes with diabetes and one was always easier.

    I believe one of my son's is 'easier' than the other, but it is still chaos on the BG's right now at my house.
     
  15. Tuff

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    Well it looks like there are several who are lucky enough to have what looks like mild type of diabetes if that even possible. We had an A1C last fall of 7.6 - our best in six years. We are very aggressive with my son's treatment but his A1C is back up to 8.1. 8.0 is his normal A1C and if I were ever to see an A1C in the 6's I would think I had won the lottery - actually I felt that way with a 7.6. After 6 years of this it is still not remotely possible to get him down. One increment change in basals brings him crashing. Start taking an increment away and he is flying sky high. Hearing doctors say get your son's A1C's down below 7...how?? We measure food, count all carsbs, do everything we are told. Nothing works. And now with his soccer that he is very involved in - he normally would go down after a game. Nope not lately. He goes VERY high, this is with no juice during his games but with the pump off, and then when we correct with the pump he doesn't come down for hours if at all. I've had to start giving him needles to bring him down as he seems insulin resistant once he goes high. Having now got diabetic nephropathy, retinoprathy often goes hand in hand which I now find out is caused by wide swings in sugars. Well great because we defintely have that:eek: The whole six years has been wide swings.

    So Heather now I guess you see why I thought we had a difficult case of diabetes compared to our friends with A1C's fo 5- 6.5. I still stand by my thoughts that some must have it easier than others because if all it took was a lot of work and diligence to achieve A1C's in the 6's then we would be there too. We all do the hard work but not all are getting the same reward of a good A1C for it. I am not disputing anyone's hard work just pointing out it doesn't pay off for everyone no matter what they do, hence my opinion that some have harder diabetes to manage than others for whatever reason. Since we all do the hard work we should all have good A1c's and we don't - but some do. The emotional toll that diabetes takes on the parents - now THAT is the same for everyone. Disclaimer: None of this is meant to offend anyone.

    Pity party at my house. Bring kleenex.
     
    Last edited: Jan 4, 2011
  16. Nancy in VA

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    I think some people's body just reacts to carbs and insulin differently than others. I know some that its "easier" and they rarely see the higher numbers. When I mention that 300s are a regular occurance for us, even with a CGMS and great diligence, they are surprised. We never had a honeymoon and started seeing 300s early, wheras I know another family 2 months into their diagnosis and the mom was a bit freaked about a 170! To use a term that many hate on this board, but I do think some are more "brittle" than others, and harder to manage - Emma is one of them and I don't expect to ever get in the low 6s with her.
     
  17. Tuff

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    Thank you. We are getting a CGM as soon as the DexCom Seven hits Canada so I am disappointed to hear it isn't helping much for your A1C's. It was my ray of hope. I still can't wait to try anything at this point.:eek:
     
  18. thebestnest5

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    Abolutely.:cwds:
     
  19. Nancy in VA

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    Emma is younger that yours, and as we are seeing in this thread, everyone is different. Emma is also celiac and her GF flours cause her to spike pretty high, which contributes to her A1C

    For us, one of the main goals of the CGMS was lows. She was having them and has zero awareness - seriously she can be running around happy and be 40! or 400! So, we are catching lows and honestly our A1C has gone UP because we are preventing some of the lows. The highs are still frustrating and I want to get them down, especially when I see people who see 200s and that's it and they tackle them quickly. 200s are common place for us and 300s are not unusual, and we are agressive with them to bring them down, but the A1C is what it is - we use the CGMS to fight the highs quickly and ward off the lows and I can't ask for anything more.
     
  20. Melissata

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    My son and daughter have always been very different, but I do think that my son has it much easier in some ways than my daughter. He doesn't carb count and can eat most anything without a bad spike, just guessing at the dose he needs for the meal. If we are off with carb counting at all, Melissa will spike like crazy and it can take all night fighting highs if she eats something like Chinese food.
    To the person saying that she hoped the CGM would help with the highs, it should. You catch the highs much more quickly and start correcting instead of hours later when they would be testing. It is invaluable for catching the lows, especially at night. Right now my daughter is on a crazy low basal rate at night and still going low. She is on a new thyroid med and I have been making changes since she started. I will be downloading the Dexcom again today to see what I need to do with her basals now.
     

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