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Scientific Sessions Update: Continuous Glucose Monitoring in the Youngest Patients

Discussion in 'Parents of Children with Type 1' started by Alex's Dad, Jun 27, 2011.

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  1. Lisa P.

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    Please understand that your practice of doing this is one of the things that moved us to CGM in the first place, and we are so, so glad we did.

    At the same time, this would never come close to working for us. If we corrected for a 140 within three hours of a meal with any substantial carbs at all we'd never catch up with the lows. It all just goes too fast in her tiny body.

    I am thinking of moving to a modified version of this plan, though. I think it's a good baseline to plan off of, but do kinda get nervous when it gets put out there without disclaimers because for some people this could be really, really bad.

    Of course, I'm a disclaimer sort of gal. And, I could be wrong. I've never actually and literally tried to follow this, it is just so entirely outside the range of what seems reasonable for Selah it scares me to even think about!

    Your basic idea of working the day instead of analyzing for patterns, though, is good to read.
     
  2. Ali

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    Like Lisa I also do not want to being doing the corrections non stop. I am an adult and there are some patterns for an adult and probably for at least a few months of time for a kid that a good software pattern would help you set as far as basals. Also some bolus patterns would probably appear and most critically exercise patterns. All I can say is as an adult T1, since my teen years, is that what I want is great numbers with almost no involvement from me!! I beieve that, yes, you always need to be watching and adjusing food/insulin due to, absorptions issues, slight hormonal (or major!) issues, exercise, over or under calculating carbs, lack of sleep etc. etc, that will always make day to day adjustment needed. But good software would help most of us make better decisions and spend less time adjusting on a daily basis. You need to roll with the ebb and flow a bit if you are going to go strong for 60 to 100 years of care.I want to spend almost no time each day on my care. I need to focus on those I love. And yes all those moments of checking the pump/cgms and eating a bit or bolusing a bit, or setting a temp. basal a bit really is a PAIN.:p:cwds:ali
     
  3. Darryl

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    Curious what insulin are you using... We used to have the same problem until we switched to Apidra.
     
  4. Darryl

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    Fortunately teenagers like mine are so connected to electronics and reply to text messages all day which are more frequent and disruptive than an hourly CGM beep. I will admit the frequent overnight alarms are tiring, though. I hope a better solution comes along for that some day.
     
  5. Ali

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    Darryl
    I get what you are saying about kids, but over the years, no matter how "connected you are" and I am now at forty years T1, and have been all on my own in terms of care for forty years, that all those little checks are draining. When as you are working, married, with a baby on hand, along with a couple of toddlers too, those moments really do add up. And when you are on your own, you are doing all the night checks, all the overall checks for food, basal, exercise, hormone, stress, weight changes, your insulin/eating needs, it is tiring and a time/mind waster. I wake up to alarms on my Cgms most nights at least once. At least for me if they can not cure me then what I want is a way of dealing with my disease that keeps me healthy and allows me to not focus on my disease for most of my waking day. After forty or more years one just gets tired of thinking about insulin, infusion sets, syringes, sensors, food, exercise, stress, glucose tabs:p and what you want is to wake up and just spend a day with your family.:cwds:ali
     
  6. SarahKelly

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    Bravo Ali, well said...your statement is exactly what my husband says, however he's not on board with all the "gadgets" for himself. He is so in tune with his body that he doesn't seem to need a CGM. He is the one who is so hesitant about using the CGM in our little 3 year olds butt all the time, I don't blame him - he knows how it feels to have to constantly think and treat d, he knows about the fears of it all from both the side of being a parent of a CWD and a PWD, too. I honor his views and request, knowing he comes from a place I will never fully understand.

    Additionally, when speaking with Isaac's endo at the last appt and the DCCT study she stated that it is no longer relevant seeing as how people aren't keeping their children in the 300's just to be safe due to variable insulin like the once were using. The study only proved that with better control the complications were lessened, but don't include the new technology that is currently being utilized nor does it show specifics for a difference between an A1C of 7.0 or a 6.8, or a 6.5 compared to a 6..KWIM?
    I believe that "better control" is what we now would consider poor control for or children according to this study and I sometimes wonder if we couldn't all use a little extra understanding about the fact that our children will be okay, we are diligently helping them to keep their body as healthy as we can, however over focusing upon their diabetes won't ever help them in the long run. I don't want to make anybody feel judged, I believe we all do what we feel is the best for our children, but I also know that in our family it's child first, diabetes second - always.
    Yes this is a great deal my opinion, but I keep looking at my 3 year old knowing that he is the one that will have to handle this disease forever and I don't want him to be afraid. I don't want him thinking about a beeping machine attached to his body all the time, I don't want him to be so wrapped up in an A1C that he is unable to see that there are more variables that effect things in his life than just one number. Darn it if he chooses to use the technology he has I hope he is able to make it work into his life, not rule it.
    I don't know the nuances of each of your family's way of treating diabetes, how emotions go or anything so there is no judgement in my statements. I just hope that those seeking better treatment don't forget that their job isn't to "fix" their loved one that has diabetes but rather to support them to be able to live their lives to the fullest no matter what, that is just my opinion.
     
  7. Lisa P.

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    I have no doubt Apidra might help, we're looking at it. I also firmly believe that the closer we can get to the kind of range you guys see, the easier it will be to maintain it. In other words, one 300 can really skew your whole day, and we usually have a 300, so if we buckled down and really just corrected every 15 to 30 minutes for three or four days I suspect it would become easier to do what you're saying.


    But it's not just the speed of the insulin, it's the duration, and it's the food. I've already seen a change in three years, to treat a low when Selah was 17 months I could give her three grapes and kablooey! Instant 50 point rise. Now I give her 15 grapes to see 50 points in 5 minutes and then have to plan for the rest to come on over the course of the next hour. Diabetes and digestion really, actually, honestly, truly do vary.

    Also, we cannot correct off a CGM. Again, if we were in that tight range we would be able to see better whether it was accurate and be able to have more confidence doing it, that's true. We treat now based on CGM, but to correct with insulin 20+ or 30+ times a day (which is where we would be with your method, undoubtedly) would be hazardous. We can certainly be 100 points off, really easily be there, even when we did everything "right". So to correct a 140 without a finger stick, especially to do so repeatedly throughout the day every day, would be insane for us.

    I'm just talking on the ground practical reality. The exact system you propose in no way shape or form could work for Selah. Like I said, I'm working on adapting it to something that might, I think something like what you are saying could really help us. But I feel the need to jump in for those reading that they need to use prudence in following your methods. I think you two are the real deal, I think you've brought much to many peoples' understanding of diabetes here including mine, I think what you are saying should be said and said frequently and repeatedly so new members can hear it, but I will probably always be the buzzing fly when I see your posts so directly recommending a specific method in front of a broad audience, 'cause it spooks me.
    :cwds:
     
  8. Lisa P.

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    I'm changing Selah's alarms when she gets up, btw, so again your advice is invaluable for us, Darryl.
    Good reminder and kick in the toosh to get me on track.
    :cwds:
     
  9. SarahKelly

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    Lisa we tried this for about 6 wks and found that the trouble is that his BG is effected quite quickly by the tiniest increments of insulin, so when he was starting to go above 120 (our range 80-120) and we increased his basal or gave him a bolus of .025 we found that he'd come back into range and then bomb down quickly. It was just very touchy, however with lows changing the basal did nothing and we still haven't figured out the "perfect" amount to bring him from say the 60's to 80 without either over shooting it or waiting FOREVER for the glucose to breakdown and bring him up.
    So, for us we found that the best solution is to keep his basal up, treat lows only when below 80 with fast acting carbs otherwise use something slower like a cup of soy milk or soy yogurt.
    That is just what worked for us with such a young child who is so sensitive to insulin and carbs, when a change of .025 can have amazingly dramatic effects, and the difference of just two carbs can mean being either in range or high! I know you know this roller coaster we ride :)
     
  10. Lisa P.

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    I sure do!
    Did you move to Apidra?
    I reset her alarms this afternoon after a site change and many hours even around 180. I've got the high at 200 and the low at 100. I'm going to see how it works to correct before we get to high and figure if I start feeding a 90 as if it were a low maybe we can avoid overtreating. It will take some effort for me not to let a steady 85 rest.
    I'm most concerned, though, about treating above 200. Since adding in the lantus, we are much less likely to have a steep spike. Still, it seems to me unavoidable that if we've got the ratios right and prebolus and left alone she would start at 100, spike to 280 and then back down to 100 by hour four or five that if we try to keep her under 200 we're going to risk a serious fast low. I suppose if we did the "give a microdrop/ give a raisin" approach correctly and erred on the side of overbolusing, what we'd see is that we basically eat a touch of food every ten minutes or so for three hours and we could stay under 200 without crashing. I know some folks with hypoglycemia have to continuously snack tiny amounts. I'm not sure that's a good long term plan, though. I suspect any plan that relies upon her eating whether she's hungry or not.
    But, it's worth a run to see if something of the kind will work. Maybe we could narrow the window to 250. We'd still then risk lows more than usual, but it might make sense to go ahead and try harder not to let her go too high and just know we have to snack her to avoid the low later.
    I think I can use Darryl's example to improve things, I have before, I can do it again. But I do have serious doubts that what we wind up with will look very much like what he and his daughter do.
     
  11. joy orz

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    Crud, I just wrote a whole manefesto and then it didn't go through.

    To sum up. Try not to fear insulin on board if there is also food on board. Use the CGM to pre-bolus a nice long amount. Hard to do with snacks, but we've been having good luck with dinner.

    When we pre-dose dinner, we end up with a nice 180-150 at the end of the night and we can watch a lovely flat line at night.

    So for dinner, use the CGM to pre-bolus, then don't fear the IOB if they are at 150 with a ton of insulin on board, because dinner is still on board. So wait it out.

    Here's the scary bit though. When we do a good pre-dose, Ava will dip into the 60's for a tinsy bit while she's eating dinner. It's nerve wracking because we think - Geesh, she's got all this insulin on board, and she hasn't finished dinner, and she's at 60. YIKES! But then the arrow turns and the first bites of dinner kick in and she goes up. She never feels the dip. On the EXTREME rare times she does, we'll add a juice box or her gummy vitamin to the meal at that moment, and cover it with insulin. But if we leave it alone, and let her finish her meal slowly, she'll have a nice little rise to 200, then slowly fade back down. Instead of what we'd typically see which is the bump to 300's and then wait for it to come down once the insulin kicks.

    So for us setting the alarm to 200 or 250 helps us tame the spike beasties. Not with more insulin, but with MORE TIME and a better pre-dose. So much better than waiting for the 350 to drop is watching that flat 150 knowing there's enough IOB to drop a 350 and leaving it alone. It was hard to get over wanting to treat a 140 with IOB, because you think there's going to be this big drop. But the trick is, with a pre-dose it matches the food digestion so you don't get the spike OR the drop.
     
  12. Darryl

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    I am still confused as to why simply correcting lows and highs would "never work"... at dx we were told to correct lows and highs based on BG checks. Now we do exactly the same thing using the CGM. After 4 years of using the CGM I don't see the difference (except of course that the CGM shows the trend, which helps make more accurate corrections). What I am missing? Does using a CGM require some complex algorithm that I am not aware of?

    Or is the concern just about correcting too often? The same is true when using BG checks, you don't want to correct until the insulin or carbs have completed working. For us, it's one hour because Apidra is nearly done working in an hour. For others it might be 3 hours. But insulin action time aside, and assuming that CGM readings are confirmed by BG checks if you are wary of correcting from the CGM, why would it never work to correct low and highs as a method of BG control? And if correcting lows and highs does not work, then what method do you use?
     
  13. Darryl

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    Ali,

    You are right, I am only talking about my own dd's situation, or perhaps in general when a parent still takes on night time testing, etc. I am not trying to say that frequent corrections would work for everyone, but at the same time, frequent corrections don't bother all kids, and the alternative is different kinds of disruptions to their daily life that result from frequent or more severe highs and lows. Given the choice, my dd would rather hear a beep each hour than deal with a symptomatic high or low as she used to before the CGM. How she may feel about this as an adult I can not predict...
     
  14. Lisa P.

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    Oh, goodness, we correct all the time. We try to overbolus and run her basals high so that correcting is often a small snack. During good times, we correct one direction or the other or both maybe three to five times a day. During those bad days recently we were correcting every hour, 24 hours a day, I'd say.

    What I'm saying is that it has to be a correction -- meaning correcting a mistake, essentially. It's not correcting if her curve is on track. So humalog lasts four to five hours for us. Digestion may peak at 2 hours but depending on the meal will continue at least 2 hours after that. So let's make up an imaginary lovely 4 hour curve for both. If we start at 100 and end at 100, and are 300 in the middle, how would you suggest we correct? That's not correcting, because the insulin is matching the carbs perfectly.

    Now, Joy has a point about timing making the spike more blunt. But over and pre-bolusing can only get us so far. Also, I'm glad it works for her but it would not work for us to let Selah go to 60 frequently during meals. I think she's on track with that we need sometimes to raise our tolerance level for seeing the numbers go lower than we expect. I also think one of the early lessons I learned here, an important one, is that where you go depends a lot of where you start, so we try not to start any eating above target.

    But what I'm trying to explain is that -- we spike. If you give extra insulin to combat a spike, and your ratios and basal are correct, then you will eventually go low because you've got extra insulin going in. You are stacking. You can avoid going low by feeding carbs, of course. And I see a benefit in essentially overbolusing so that you don't spike as high but then you plan in a snack at hour three, we do that a lot. But in our case, prebolusing or not, our digestion and the action of the insulin do not match well enough to avoid a spike, so correcting a spike without anticipating treating a low will be a problem. Trying to do this over and over throughout the day is too much risk factor for us. I don't mind answering an alarm frequently. I do mind knowing that if I don't answer that alarm, my kid will lose consciousness and risk all that fun stuff. I can't be that tense 30 times a day.

    I actually have great difficulty believing that Apidra works for you in one hour and Humalog in -- did you say it was gone in two or three? I really have to make myself believe it, because it seems so impossible for us. But I do believe you. So I can understand why you might have a hard time imagining what I'm saying. But does it make sense, what I'm saying, even if it "feels" like it just can't be true?
    :cwds:
     
  15. joy orz

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    Lisa, here's the key. She really only dips for about a minute or two. It's such a tinsy little dip and it doesn't last. We would NEVER have known about it if we didn't have the CGM. But because we have it, the low alarm goes off and gets everyone all in a twitter.

    The first few times it happened we checked with her meter every 5 minutes and watched it go back up. But it did go up. And she didn't feel it. Again, had we only been doing finger sticks, we'd never know about it. I asked her endo and she wasn't worried abouut it because it is such a short period of time and she doesn't even feel it. And it's only a tinsy low. I'm mentioning it because when we pre-dose here is what happens...

    Starting BG 115 matching on CGM. Pre-dose 15-20 minutes while watching the CGM have a straight line or a mild down curve. Start eating 20 minutes in. About 5-10 minutes after the meal starts, she dips to 70 and the CGM alarms. We ignore the alarm, she keeps eating. Then she'll hit 60 on the CGM. She keeps eating. Then the CGM hit's 50. We check on the finger stick and she's at 80 because the first part of dinner has started to kick in.

    As she keeps eating, the CGM lags behind about 15 minutes and appears low, but in reality her BG is in range. When we do this her curve is in the 100's instead of spiking to the 300's and coming back down.

    The trick is not reacting to the low alarm because it's happening during the meal while she is eating so she is in fact treating the low. I WOULD NEVER DO THIS IF SHE FELT LOW AT ALL.

    The one or two times she felt low, we did give her some juice just in case she was digesting the food slower, but she generally feels fine. And again, it lasts for like a minute or two. This a little blip that we wouldn't know about without the CGM, so sometimes having it can give you too much information.

    Also, just to stress, I would NEVER ignore the low alarm if she were not in the middle of eating her dinner. (Or if she was eating something really fatty). We always correct a 60 with fast acting like a juice or gummy except for the times when it happens at dinner. Then I just ask her how she is feeling and ignore it, knowing that she'll curve back up and land in range.

    It's really hard to do because it goes against the thinking of treating a low with insulin on board. And it's really nerve wracking. But after having done this several times, it's so much better to eat a nice meal slowly, and have the carbs match the insulin than in it is to have the spike to the 300's and wait for it to come down. This is why the CGM is a mixed blessing. We'd never have known about the dip at dinner without it. BUT we'd never be able to get that nice curve and go to bed at 140 instead of 300 without it.
     
  16. Darryl

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    Lisa,

    That is really helpful in understanding your earlier comments. Now that you explain things this way, I want to say that we correct hourly (and yes, Apidra really does finish up in about an hour) I don't mean that we always apply the standard correction formulas hourly, as that could lead to problems. Here are some examples:

    First, she will mot correct meal spikes unless it's past the insulin action time and the BG has settled out at a high value. If there is any sign that the BG is still dropping, she won't correct.

    Let's say it was well inbetween meals, and her alarm went off at 100, and she sees on the CGM that BG had gone from 95 to 105. She would give herself a small bolus, and raise her basal a little.

    Now let's say an hour later the CGM beeps and she looks and sees that since the prior correction, BG had gone up to 140, peaked, and was now 110 still dropping slowly (the 110 will trigger the CGM alarm since it's still over 100). She won't correct the 110, she'll just silence the beep.

    The idea with the hourly "corrections" I speak of is that by having the information to look at, you can decide what to do, and sometimes the correction is to do nothing at all.

    Here's an example of where she would correct 1 hour after the last correction bolus, even if Apidra might not be completely done: Let's say in the example above, at the first high beep (95 --> 105) she had taken a 0.2u bolus and increased her basal by 0.2u/hr. Now an hour later - even though Apidra might not be completely done, her BG is 200 heading up. In this case, the initial bolus was clearly too small to have had any effect, so insulin stacking is NOT a concern. If she had waited, say until 2 hours after the first correction to be sure the first correction was 100% finished, her BG would be 300 by that time, and that is the start of the roller-coaster.

    I think that Apidra works faster in my dd than in some other people, but just about everyone finds that it is much faster, allowing us to correct more frequently without insulin stacking.


    It is important to trust that if she has eaten carbs, the BG will start to rise in a few minutes, even though the CGM does not reflect it right away. A low alarm 10 minutes after eating can be ignored unless you think that there was an overdose of insulin in the recent past. It also can take 20 minutes for the child to feel better after a low, even if BG is higher. Eating more does not speed the process of feeling better, but it can cause BG to then spike very high, resulting in the need for another correction, and again the roller-coaster.
     
    Last edited: Jul 2, 2011
  17. emm142

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    I get what you're saying.

    Darryl and I had some nice chats via PM and email a while back, because I was interested in trying out the way he manages Leah's BG. On the surface, it didn't work for me like it does for him - I would end up stacking and dropping and treating and going high.. For me, I think the issue was the DIA of Novolog. It hangs around in my body for a good 5 hours. I know some people see it gone faster, but it's just not so for me.

    That's not such a problem for me with meals, because my digestion also seems to be slooow. For a lot of foods, the Novolog matches it quite well, and they both finish working at about hour 5, with a spike up to 200-250 max.

    The problem I have is with treating highs and lows. I just can't correct a high whenever I hit 100, because at any given point I always have IOB. I rarely go 5 hours between meals / snacks, so there's always some residual insulin hanging around. If my DIA was only an hour, I can imagine how I could correct hourly (although I'd then have a huge issue matching the insulin to the food, and I'd probably have to do a square bolus). I don't know if I'd be more aggressive with highs if my body didn't have such a propensity to let me drop from 80 to 30 in 10 minutes. :eek: I really feel most comfortable in the 120-140 region.

    But I did still learn a lot from Darryl's methods. I'm now way more proactive with basal changes. Rather than hanging around for 3 days trying to spot a pattern which genuinely doesn't exist, if I've been hanging in the 200-400s for 4 hours and corrections aren't working, I'll up my basal. All the way up. Sometimes I do need 300% for 2-6 hours until I see some kind of response. And if I wasn't doing that, I'd be getting ketones, correcting many units of insulin at once, and not seeing a great deal of improvement.

    I'm not really sure what I'm saying, except that I think we all have limitations to using methods as aggressive as Darryl does, but there's still a lot to be learnt from them. I wish that my insulin and my digestion would both be a bit faster, and then I could correct highs faster and get lows up faster without a later high, and I have no doubt that I could get a lower a1C if that were the case. As it is, I'll stick with my 7-8% and try to adapt other people's methods the best I can to fit in with my own limitations.

    PS. I'm not really in the age range of this study :p but my a1C only improves on CGMS when I'm able to wear the thing constantly for 3 months. The 3 month period I did that for I got down to a 6.5%, which is WAY lower than I can normally be. If I use the CGMS intermittently it's still brilliant for spotting lows and highs during the time I wear it, but doesn't make a dent in my a1C. The study may not have reached the same result if it followed more people who used the CGMS full time.
     
  18. Ali

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    Darryl
    I do think the approach you use and that I use is the best for many T1s, certainly it is for me. The CGMS and pump allow me to spend less time on my care and less time thinking about it. All I was really commenting on was that even with these tools no matter how you care for T1 the day to day adjustments and awareness just add up over a lifetime. I love being able to adjust in little bits. But all that being said any improvement via software or automated systems that allowed me to spend even less time thinking about it would be great. My comment was really less about your approach but more about the general toll that T1 care takes in terms of being there and being managed (one way or another) by the T1 24/7 over a lifetime. All the Dr. visits alone get to be a pain:p. But I am so thankful that I am able to manage it and live a really nice life.:)Ali
     
  19. joan

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    I don't know if someone has said this in some of these posts but managing a 4yo vs a 13 yo is a world of difference. Toddlers are so different than teens. Lisa, when Selah is older you may be doing things this way.
     
  20. Lisa P.

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    Joy, I don't doubt for a moment what you're doing is perfectly safe and good for you.

    The lessons you talk about are not ones I'm unfamiliar with, and it's good to have a reminder. Honestly, we no longer think of 60 as low unless there is movement down.

    We always prebolus, usually by at least 15 minutes, unless she already starts below 80.

    I will confess I exaggerate to say 100 to 300 to 100, it's to illustrate a point. When we do things "right" we can stay below 250 for the spike, and we can have nice even lines on either side of it and it's not as spiky. We had a lot of trouble recently that has been resolved with Lantus and different sites, so now we are at "normal" we can sometimes see a move from 100 to 150 to 100 nice and gentle after a meal.

    But this is not something we can count on. And prebolusing and overbolusing does not guarantee it. I had to accept that we will often -- often -- see her spike past 250 after a high carb meal where we've done everything right. Sure, sometimes we get higher numbers because we treat when we shouldn't, we overtreat, we don't prebolus enough, we count wrong, we don't factor in fatty hot dogs, all that jazz. But sometimes, often, we can do everything right and still we get a spike above 250. And when that happens, we have the choice to either correct the 250 and then watch to treat the inevitable low, or we can let the 250 ride until the dosage she has brings her back where she would be.

    Part of our issue is lifestyle. We do not have regularity in our life. I've decided that this is all right. Our family gets a lot of good out of the way we do things and I think going to more regularity would be a mistake for us.

    So there's a ton -- a ton -- of good here. And I think it's good to consider correcting that 250 and treating for the low. My only reason to step in is not to argue or anything, but because I think telling a mom or dad of a young kid that if he or she gets a pump and a CGMS and sets the alarms at 100 and 140 and corrects regularly he or she can have a kid with an A1C below 6 safely is missing a huge YDMV chunk. I do get scared someone will take it very literally and learn the hard way that it was a mistake. If we had read Darryll's posts when our kid was diagnosed at 17/18 months and followed them -- well, who knows? Maybe it would have been great. But I think we would have had a very bad ride.

    We modified the plan yesterday and we had a very pleasant day. I think one of the great things about Darryll's plan is that once you are in a good range for a long time it becomes easier to stay there. Another unexpected good thing was that in setting the low alarm at 100 we were able to treat just a tiny bit, and that has made a big difference. Darryll's plan also fits well with our other choices because we can adapt it to any activity or meal plan we choose, we don't have to structure our day around diabetes, we can add it in in little bits. So if we can find a way to modify it well, I think it will really suit our family.
    :)
     

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