- advertisement -

Are young children "protected" from comlplications of hyperglycemia?

Discussion in 'Parents of Children with Type 1' started by Darryl, May 10, 2009.

  1. wilf

    wilf Approved members

    Joined:
    Aug 27, 2007
    Messages:
    9,652
    I have also heard that the honeymoon can be extended through intensive management of BG (as expressed by low A1Cs). What I have a problem with is when people promote "their" method (in this case the CGM) as being superior to others in terms of achieving that or any other goal, and that is certainly the tone of far too many posts in this thread.

    We managed to achieve A1Cs which were consistently under 6 using (gasp!) an NPH-based MDI regimen and blood glucose tests for more than 1 1/2 years, until puberty knocked DD out of her honeymoon. The point is, I wouldn't have dreamt of promoting our way as "the" way to achieve those great A1Cs - I was well aware that we had it easy for as long as DD was honeymooning.

    As I've said before, there are many ways to achieve good control and low A1Cs - and we should be wary of promoting our methods too evangelically. This applies in particular if our children are still honeymooning.. :cwds:
     
  2. Nightowl

    Nightowl Approved members

    Joined:
    May 6, 2008
    Messages:
    168
    Anyone who takes the time to research the results achieved with a CGMS cannot deny that it is a remarkable tool that is capable of dramatically increasing control in virtually everyone who wears it. That is a good thing for every child. Every child deserves the best control possible. Unless a child has a completely normalized A1c with a very tight, normalized range, then there is room for improvement. Discounting the CGMS as a tool that may work for some and might not be best for others is the equivalent of saying, "well, some choose to use a glucose meter but others get great control testing their urine every morning." If there are tools or methods available that will increase the control for a child then that child has a right to them, and the parents should make it a priority to make those tools and methods available to their child and teach them how to use them. Is there any other way to look at this? Is less control ever a better choice for any child?

    The best adjusted type 1 diabetics, regardless of their age, will always be the ones who achieve the best control. The argument that for some kids "less control" is the best choice because "they must be kids first," is ludicrous. A diabetic child can never be "a kid first" as long as he is on a blood sugar roller coaster.

    Wilf also posted that:
    "There is a balance to be found though, which needs to consider:...
    - avoiding obsessive attention being given to the D to the detriment of the child or family.​


    This argument suggests that attempting to achieve better control is an act of obsession that is destructive to the family. That is simply false. The truth is, the better control the child has the less time and effort is involved in managing diabetes, which in turn always translates into a better quality of life for the child and the family. The more out of control the child is the more the entire family suffers and the more "obsessive" and exhausted and distraught the parents are.
     
    Last edited: May 16, 2009
  3. Nightowl

    Nightowl Approved members

    Joined:
    May 6, 2008
    Messages:
    168
    Just think of the control your daughter could achieve by adding a CGMS to your methods. I guarantee you her A1c would drop and you could tighten her range. Wouldn't that be a good thing? A great A1c doesn't mean much unless the range is very tight. The truth is that the CGMS is a "superior" system. It just is. There is no denying that. By promoting the CGMS Darryl is doing a great service to parents. He is even taking his time to teach parents how to use it - in order to give their children better control. That is a good thing. It should not be criticized, it should be praised. Why are you offended by that?
     
  4. Reese'sMom

    Reese'sMom Approved members

    Joined:
    Jan 18, 2009
    Messages:
    1,294
    As I see it, there is no point in arguing over the "best" techniques or tools overall, because the point is to use whichever combination of tools and techniques will work best for each child and family. Remember the mantra...YDMV, and through CWD I have sure learned a lot about just how much is does vary from person to person.

    The point, as I see it, is the desire to see Pedi. Endos who already know (or should know) the benefits of tight bg management, providing a more full and complete education to newly dx'd families on ALL of the tools and techniques of bg management and letting them participate in making decisions about which regimen, tools and even bg targets to aim for.

    edited to add: And of course, the desire for Pedi Endos to stop setting time-lines or other unnecessary obstacles for families getting whatever tools they wish to use (pumps and CGMS's).
     
    Last edited: May 16, 2009
  5. wilf

    wilf Approved members

    Joined:
    Aug 27, 2007
    Messages:
    9,652
    I agree. :)

    It's posts like the ones above yours that I object to..
     
    Last edited: May 16, 2009
  6. buggle

    buggle Approved members

    Joined:
    Mar 24, 2008
    Messages:
    4,267
    It's all in how you use the method. No one is better than Wilf at MDI. He has far better control than most people on pumps. I want to avoid pumping. I don't want to get into why, but I really don't want to do it. I'm hoping that if Brendan's D settles down, we might be able to get to an A1c of 6% on MDI. If he could ever go under 6, that'd be great. But I'm not willing to do what's required if he has to pump and CGM and adjust with minibolus or sugar every half hour round the clock. I'm also not willing to limit carbs. I may regret that later, but I have to consider what I think is best for him now and in the future and balance that.

    I love CGM, but I also don't want to stick my kid 14 times a day. You can achieve tight control with either method -- depends on which one appeals to you.

    I don't want to use low carb to achieve tight control. I'm worried about high protein causing kidney damage and high fat causing kidney damage and arterial blockage. Some people may not agree and I have to deal with using more insulin and having more variability. But I want my child on a high complex carb diet. I think it's best for his long term health. Others think I'm destroying his long term health. We each have to do what we feel is best for our kids. And though we can keep an open mind and listen to each other and really think about why other people manage how they do, we have to have a thick skin about our own choices. If someone doesn't agree with how I'm doing things and I've really carefully thought out why I'm managing this way and don't agree with them, so what? We each have our reasons for the way we do things. We're each swayed by different evidence about what we think is best for our kids. Some parents obviously feel very strongly about their methods. I'm trying to keep learning and I'll adjust as I see reasons to, but I can't let other peoples' opinions affect me and waste my energy on that. I'm having a hard enough time as it is.
     
  7. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Wilf,

    Yes, that's my point exactly!

    I started this thread to raise the importance of early, intensive BG control for newly
    diagnosed children, regardless of how young.

    I can't know for sure if my daughter is still honeymooning. Her IC ratio is around 11:1,
    and on some days she needs 30+u of basal, but on many days (including all of the past
    5 weeks) her basal has to be shut off from morning until bedtime or she'll go low all day.
    Her pediatrican (who has T1) believes this is still the honeymoon.

    But look where her BG control was 2 years ago vs. today... 2 years ago, her BG's would
    get up to the high 200's routinely even using the CGM. During the past 2 years, we've
    tightened her target range lower, and narrower, a little at a time... and all the while, her
    insulin needs have decreased on the average and her BG has gotten easier to control as
    time has gone on. Since earlier this year, with the exception of a few weeks, her BG is
    easier to control than ever, and in a tighter range than ever.

    2 years ago:

    [​IMG]

    Last week:

    [​IMG]

    I think what we are seeing is the same effect reported in the DCCT where hundreds of T1's
    who began intensive insulin therapy soon after dx had prolonged honeymoons, easier time
    controlling BG, and less incidence of complications vs. those who did not engage in early
    intensive control.

    In other words, what we're going through is nothing unusual, and was well documented 10
    years ago. But for some reason (fear of less office visit revenue?) the Endo industry has failed
    to adopt this well documented and repeatable advantage of early intensive insulin treatment
    as the current standard of care. Especially surprising as this is not 1998 anymore, not even
    2006 before CGM's were available... this is 2009! And new children are being dx'd every day.

    So back to the question you asked about my daughter (the same question applies to hundreds
    of the DCCT participants who prolonged their honeymoons as well), I am saying that the Endo
    industry should adopt as the current standard of care that all newly diagnosed T1 children,
    no matter how young, should be evaluated for intensive glucose control upon diagnosis, and if
    the parents are able and willing, they should be prescribed the necessary devices to make
    intensive control a possibility.
     
  8. buggle

    buggle Approved members

    Joined:
    Mar 24, 2008
    Messages:
    4,267
    Darryl,

    I think the reason the endos don't try to teach tighter control is that most parents simply aren't willing to do it. They aren't willing to learn, they aren't willing to put the time in and they aren't willing to be bothered. I hope that's not true, but it may will be. The problem is that the parents who are willing to put the time and effort in never know that there's another way unless they go looking for it on their own and find places like this.

    The same thing is true in almost all the rest of medicine. How many people do you know who are overweight, have high cholesterol and either already have heart disease or at high risk are put on a program like Dean Ornish? Most cardiologists don't even mention it as an option. They know most patients are just not willing to adopt the stringent lifestyle. So, they tell them to try to limit fat to 25-30%, try to exercise, put them on a statin and send them on their way. They'll do bypass surgery before they'll tell them to do an Ornish program.

    The other thing is that educating patients to a high degree takes effort on the endo's part too. From what we've seen, how many endos know much themselves or are willing to spend the time or who even can given the constraints of our broken healthcare system? Those of us with good endos are lucky. I haven't been impressed by the CDE's we've been around. The knowledgeable parents here know a whole lot more than the CDE's I've known.

    The endos are trying to keep the kids alive first. And they've dealt with a big enough cross section of the population that they know what to expect from parents. You have to be realistic about what most people are like.
     
  9. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Buggle,

    Even if that was true, it is no excuse for an endo practice to not be aware of the current standards of care, and to have these available for discussion to newly diagnosed patients. And certainly no excuse to say "NO" when a parent who clearly wants these options asks for them and is denied with the bogus reasons that are all too commonly relayed in this forum.

    We're not talking about adult patients who can make up their own minds on how to treat their D, we're talking about children as young as newborns for whom doctors are denying a level of care that was proven effective in the DCCT more than 10 years ago, and which is now readily facilitated using devices that were FDA approved for pediatric use 3 years ago... yet many endo practices don't know about them, are not trained in them, do not even suggest them, and say "NO" to parents who want them. I really don't think the problem is with the parents!
     
  10. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Wilf,

    There is no evangelizing here... that is for religion. I am interested in the scientific studies that have found improved health outlook newly diagnosed children.

    A1C's are one measure of control, but it is a single data point that poorly summarizes the most recent 2,160 hours of glucose control. I am trying to raise awareness that it is the 2,160 hours of BG that may matter, not just the single A1C.
     
  11. mph

    mph Approved members

    Joined:
    Nov 26, 2007
    Messages:
    964
    I couldn't agree more ;)

    Complications from D are a possibility. We all know that. Young and old. MDI or pump. Research shows it. It's a possibility. We as parents try our best to manage D daily.

    Any new tool/method that helps me meet the goal of keeping Nick's bg at a target range to help prevent future complications AND helps Nick's quality of life with D improve right now (mental state) is a Godsend, IMO, and certainly worthy of a TRIAL!!!!!

    I'll just "lovingly" ;) say it........please don't knock it until you've tried it! :)

    We've all tried MDI. Some stick with it and some try out a pump. Some stick with the pump and some add a CGMS. All choices are ours to make.

    Prior to actually TRYING out a pump and CGMS, I would not have believed that they could be as useful as they ARE!!!!! I am totally AMAZED and delighted daily!!!:cwds:
     
  12. C6H12O6

    C6H12O6 Approved members

    Joined:
    Sep 16, 2008
    Messages:
    1,451
    Wilf,
    Are you saying you would turn down a cgms ( and supplies ) at no cost or very little out of pocket cost?
    I ask this out of genuine curiosity.
     
  13. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Thank you EVERYONE for your contributions to this thread. I hope the topic has been more helpful than divisive.
     
  14. Ellen

    Ellen Senior Member

    Joined:
    Oct 22, 2005
    Messages:
    8,240
    In response to the title question, what possible mechanism leads anyone to believe "protection" is conferred on young children with type 1? I believe the clock starts ticking from day one. Genetic makeup also plays a part in propensity for development of complications. That said, we as parents must teach our children to live a life with balance - emotional health is as vital as physical health. Delicious, healthy, nutritious food choices can be learned from very early on. If those are the choices of food to eat, we will choose from them. We cannot live by the numbers and we certainly cannot expect our children to do so. We can try to do our best each day, and that includes our best for everyone's mental health too.

    As for tools - embrace what feels best for you and for your family at every given point in time. Learn too, to step out of your comfort zone to try something new. If it doesn't work, you can go back to the way you were doing things before, until something else new comes along that may improve quality of life. Stay open to learning. Not every new gadget on the market is the greatest. (I would love to see the old (Medisense) pen- sized meter come back because it was so small, unobtrusive, easy to carry. But back then we use 2 shots of NPH/R per day and for us it was a nightmare.) I need a doctor who is cutting edge, knows about the research and all the tools available.

    Some research is more compelling than others. Know who pays for the research to be done.

    Keep in mind, while walking the tightrope, our children have to enjoy the view too.
    [​IMG]
     
  15. Jacob'sDad

    Jacob'sDad Approved members

    Joined:
    Nov 20, 2007
    Messages:
    3,803
    The pump and CGM were, in fact, presented to us almost right way upon Jacob's dx. The push may not have been real hard but the info WAS made available. Those early days are still a cloud but I think we took our first informational pump class within the first 3 months of dx. The Medtronic Paradigm CGMS was shown at that first class as well.....

    TWO YEARS later Jacob got his pump. Still no CGM.
    If it's that hard to get ME to listen and take action how hard must it be for many others??

    What was probably missing though, was a hard line taken by Jacob's endo concerning hyperglycemia. Maybe if he had been more hardball about it we would have acted sooner to get the pump. Maybe a little more education... I can't be too hard on him though; he brought up the pump at EVERY appointment and now he brings up the CGM EVERY time. He's a heck of a nice guy and he pushes but not TOO hard.
     
  16. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Sounds like he's keeping you informed and making the offer in the right way.

    Did he suggest any reasons for the CGM aside from what you already knew?
     
  17. seeingspots

    seeingspots Approved members

    Joined:
    Feb 11, 2009
    Messages:
    247
    Very interesting thread to read, and as I've posted before, we're still trying to find an Endo that is willing to help us get tighter control on Alden's BG values. We have been on the pump since the beginning, although I know all about doing MDI from having to give shots to T1 diabetic monkeys at the San Diego Zoo (not implying that a monkey is the same as anyone's children on here though!:D). I think we could handle either method, and each seems to have it's own advantages/disadvantages.

    For us it's not a matter of not wanting better/tighter control, it's a matter of not knowing HOW to achieve this. Our Endo/CDE's don't offer any more help other than a suggestion here or there about changing an I:C ratio or a basal... but only after we've faxed/phoned/bugged them for advice. We went to all the required courses, read books, taken advanced pump classes and I read these forums like a fanatic, but a lot of it still goes over our heads... or a lot is just "Information Overload". We weren't taught stuff like how to calculate his ISF (it was just programmed in to his pump as 300), how to do basal testing, or other "advanced stuff". I know, it'll probably get better as we go along and learn more... but it's also scary to know that we need to have control from the get-go in order to prevent complications down the road. We struggle with numbers which seem to come out of no where, and there's times when neither one of us know whether to correct or not, to give extra carbs, to do a temp basal, etc... then, miraculously, we get several days of great numbers, pat ourselves on the back, and boom- back to square 1 with wonky numbers. I know, YDMV, but for those of us with the "type A" personality, it's extreemly frustrating when he gets even slightly out of his target range (80-180) for reasons we don't yet understand.

    We are trying for a CGM, but it too is a cause for annoyance, as Cigna says he must have 4 episodes in 30 days of below 50 to qualify for coverage. We have had way more than four lows down in the 50's, but nothing beneath this... and the reason is because we are constantly checking him every 2 hours and correcting, even throughout the night. What is a parent to do??? Should we check, see he's heading for the low 50's and sacrafice our child's welfare by purposely letting him go lower just to qualify??:confused: We aren't willing to do that. (And since Cigna knows we are on a pump, they want the Animas downloaded printout of BG #'s, so it's not like we could "accidentally" fudge some numbers.:rolleyes:) But realistically, we also cannot afford a CGM on our own at this point... as even with insurance, we are still paying off our share of Alden's $22,000 hospital bill for his DKA at dx, paying for the pump and all the rest of the monthly supplies. As I've mentioned in another posting, our 1st endo told us that he wasn't going to even help us get a CGM at that point, because he felt that Alden was doing "just fine", since his A1C was 6.8 (down from 11.7 at dx); and then a few weeks ago we were also told by the CDE that we didn't need to check or correct for highs or lows overnight (as I questioned on here before and got a lot of feedback- thanks) because in ones as young as Alden (he's 14 mo.) they can handle it. My DH nor I believed this, but it's interesting to read that there really isn't any "protection" no matter the age.

    I hope one day soon we too will have a better handle on Alden's values and can have as beautiful a graph as Darryl's, and with all my heart I wish that we never had to deal with D to begin with, but that's a pipe dream at this point.
     
  18. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    One of the nice things about having a CGM (and proper training) is that problems with ISF, basal, and IC become visually apparant. It not hard to see if BG doesn't come down enough after a meal, or if a correction (ISF) was too much, or if BG starts climbing or falling inbetween meals.

    Managing with a CGM is so much less math-intensive, because for the most part you are just looking at the graph and steering it back into range when it gets out of range. I would compare it to the driving a car, rather than asking a doctor to compute every turn of the wheel for you using math that is not apparant to you. Insulin needs change often anyway, so whatever the endo advises has a limited effectivity. With a CGM, all of the logging, computing, various theories go out the window and basically what you do is just give or increase insulin when BG is going high, and give carbs or decrease insulin when BG is going low. Other than learning the CGM's buttons and menus, it can be a tremendous simplification of D management (provided again that you have been trained properly).

    If you get the CGM, please let me know how it works for you. I think your post is the perfect example of what I was saying earlier, how managing with MDI and BG checks is a lot more difficult than managing with current technology.

    About the episodes of BG below 50 - I think if you mix various proportions of sugar and water you can get there.
     
    Last edited: May 16, 2009
  19. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    Cheryl, I don't believe that Wilf was discounting the use of CGMS at all. I also think that is a very poor analogy (no offense) :cwds: I think the CGMS can be great for some people but others may not want to use it and that is OK.


    I respectfully disagree. Best adjusted in what way? If a parent makes their child's life a living hell trying to achieve "the best control" (and I am NOT saying anyone here does) does that mean that child is well adjusted? They may have great control, but at what price? It is a fine line that we all walk managing this illness, but I believe that a child can definitely be a kid first very often. Meaning I don't think you need to choose between good control and being a kid first. You can have both.

    I did not take Wilf's comment to mean that at all. I think he was simply talking about the need to have balance in the management of this illness.

    I would also respectfully disagree with this statement. I think it takes a lot of time and effort to manage this illness. The more time, effort, research, etc. that you put into it, the better your chance at getting good control is. Just my 2 cents.
     
    Last edited: May 16, 2009
  20. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    Darryl, I have to respectfully disagree. You don't need to guess at all. There is a very simple solution to the issue you outlined above. All you have to do is test again 15 minutes after you get the reading of 120 to determine if the bg is going up, down, or staying the same and then treat accordingly. :cwds:
     
    Last edited: May 16, 2009

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice