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Newbie with a few questions.

Discussion in 'Parents of Children with Type 1' started by scarral, Feb 22, 2016.

  1. scarral

    scarral Approved members

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    Hi all! My almost 4yo ds was diagnosed in October, he has a Medtronic 640G pump with Enlite sensor, although the latter we have had only for a couple of weeks.

    The first couple of weeks after we came back from the hospital his BG was never above 180, then he got a cold and the rollercoaster started... BG up to 400! The first day this happened he didn't have a sensor yet, so it took us completely by surprise. He also had keton bodies in his urine! And that's when we realised that we were never told what to do in that case. It turned out that he was fine (finally his BG started dropping, and a few hours later the ketons were gone), but what a scare that was!

    His HA1c thing was 11.7 when we got to the hospital, but he didn't have DKA. On his last checkup it was 7.2. How low can it get?

    Wr have the SmartGuard function active, and since then we've noticed that the pump stops the basal insulin a few times per day. Then when I adjust something so that he gets less insulin and therefore doesn't drop that much, he has very high values the next day. Is it reasonable to expect basal interruptions often? Or do I have to try to do more finetuning?

    The hospital that is advising us supposedly doesn't have many pump+sensor+smartguard patients, so they said we should just experiment with the sensor+smartguard settings to find what suits us best. How do I know when the settings are right?

    We've had days when he goes up after eating and then stays up for hours, even after a correction bolus. In such a case he needs two or three correction boluses plus an increased basal rate for a few hours before dropping. There are other days when he hardly goes up after earing, amd then drops back down, then the pump stops again. Sometimes the pump stops for two bours, is active for half an bour, then stops again. Sometimes the pump stops only for half an hour on a given day, and his BG is within 60-180 for the whole day, sometimes one day is a mixture of all the above. How normal is this? Should we expect more consistent behaviour, a better setup of basal and bolus? Or is this to be expected?

    The doctors at the hospital said that people who are not in the honeymoon period anymore have a 50%basal and 50% bolus per day. He has about 75% bolus at the moment. He weighs 16kg and needs about 10 insulin units per day (Humalog). Is the honeymoon over? How do things change when honeymoon is over?

    Thanks for any comments you can offer!

    Sandra.
     
  2. rgcainmd

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    After trying to consolidate all the information you provided (which is very helpful, thanks for the details!) my quick and easy, down and dirty answer is I think you need to adjust your son's basal rates up during the time periods of the day/night when you see a pattern of him running high. I highly recommend that you read Gary Scheiner's Think Like a Pancreas and John Walsh's Pumping Insulin. I learned so much about adjusting pump settings from these two books.

    What setting do you have the suspend function set to? Because if it is activated that often in the face of your son running high a great deal of the rest of the time, I'd venture a guess that it is set to activate at a BG that is too high. I, like a lot of parents on this Forum, subscribe to the belief that anything over 60 isn't a low BG.

    Additionally, if corrections aren't bringing your son's BG back down within the range you desire, the ISF needs to be adjusted.
     
  3. rgcainmd

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    RE HA1c, I honestly don't know how low it "can" go. I do know that no higher than 7.4 is recommended. We shoot for as low as we can get with my daughter spending less than 7% of the time under 59. I'm happy with HA1c's 6.8 and under; 5.anything makes me especially happy, once again as long as the A1c isn't driven to an inaccurately low level by too much time spent low. Please realize that this is what works for my daughter who is a lot older than your little guy; his age, along with all the other things that makes his Type 1 unique, should be taken into consideration. I don't know if you are familiar with the term "YDMV", but in case you aren't, it stands for "Your Diabetes May Vary". I take this to essentially mean that every kid with Type 1 is very much unique and what works for one (or even many) may not work for you.

    And BTW, welcome to this Forum! I've learned more about the big D here than I learned about it in med school, from my daughter's comprehensive diabetes team, and every book I've read on this subject combined.

    ETA: My daughter just reminded me that her lowest HA1c to date was 4.8. But I was likely trying to control her BG a little too tightly, as that particular A1c reflected 9% time spent low (which our endo at the time was OK with; her "cutoff" for too much time spent low was 10%.)
     
    Last edited: Feb 22, 2016
  4. Michelle'sMom

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    Do you have Medtronic rep you can contact, or have you checked to see if any Medtronic classes are available in your area? I'm a little surprised your endo isn't being more helpful.

    The 50/50 rule is a guideline & doesnt hold true for everyone, especially young children.

    A1c goals vary by age, as do BG targets. There are many members here with experience with T1 in young children. I'll leave it to them to advise you on goals.

    I'm sorry for the diagnosis, but this is a great place to learn. Welcome to CWD.
     
  5. quiltinmom

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    It's hard to know if what you describe is caused by pump settings that need adjustment or if it's normal diabetes life. Most of it is stuff we have experienced, and continue to experience, after 6 years. Sometimes we have night time highs that are unresponsive to corrections and he's 300 for 6 hours, and other times, doing the exact same things, he floats at 90 all night.

    75% bolus is what we were at during honeymoon. I'm guessing your son is still in honeymoon. When it's over you'll see dramatic increases in insulin needs (maybe even double). Don't worry about that much right now. The percentages are just a very broad guideline, not hard and fast rules. Go with what he needs, and don't focus too much on what % basal/bolus he's getting.

    I think an A1c of 7.2 is pretty good for a 4 year old. Go with your endo's advice on this one. :). Now that you have the cgm you can keep a little tighter control, or at least catch highs and lows sooner than you would without it. Often, a child who has an a1c at or below 6 has too many lows, so many doctors don't want kids to be below 6. So anywhere between 6-6.5 and 7.5 is normally a good range. Different things work for different kids. Some kids are able to achieve a1c below 6 without many lows, but I'd say they are exception.

    As for post meal numbers I find that different foods sometimes are the cause of the craziness. Most of this is trial and error, keeping track of how different foods affect him and learning to bolus accordingly. Keeping records of what he ate, how you bolus (if you did a straight bolus or dual/square wave) and how his bgs reacted, is one way to figure it out.

    Another big factor is exercise. This can help with post meal highs, or can cause lows that come on suddenly. The other branch of this arm is excitement. This can cause highs or lows, depending on the child.

    When you adjust basal settings, standard recommendation is no more than 10% up (or down) at a time. So if he gets 1 unit per hour, change it no more than to .9 or 1.1. Also, I rarely make adjustments based on one day. I nearly always wait at least 3-7 days to see if a pattern emerges, before I make changes. As for knowing when settings are right...it takes a lot of guessing. And it seems like just when you think you have everything just right, he has a growth spurt or an illness and it is all messed up again. Don't worry too much! There will always corrections for highs and lows, even when pump settings are right. That's just life with diabetes. When ds starts having highs or lows that are unexplainable, that is when we look at changing pump settings. There is more than one good way to handle this. You will figure out what works for you as time goes on, and getting help from your team is your best bet until you feel like you know what you're doing.

    Does the enlite seem to be accurate for you? When the pump stops is he actually headed for a low? There may be some settings there that can be tweaked, if it stopping when it shouldn't and causing highs. Medtronic may be able to advise you on this.

    Let us know if you have any more questions. :)
     
  6. scarral

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    Well we tried out the sensor for two weeks in December, and back then I set the low setting at 60, but then I did have the feeling that the pump was stopping the basal too soon and too long, so that later he'd be high. So the past couple of weeks (we got them on the 6th February), I set it to 50, which is what one of the Medtronic representatives suggested (he didn't say I should set it at 50, he said I could try setting it lower and see what happens). He was pretty low inspite of the pump stopping twice or three times already (below 50), so the last couple of days I set it to 55.

    I was indeed told in the hospital that anything above 60 is ok, and below 60 is too low. Is that not right?

    I have two basal programs at the moment, one for home (holiday) and one for Kindergarten (working day), because he tends to go too low in the morning while in Kindergarten. Today he stayed at home, and I forgot to change the basal program, and he was high again and not coming down. So it really looks like it's all in the basal settings...

    I guess ISF is insulin sensitivity factor? It's set to 200 now (1 unit of insulin makes BG drop 200 mg/dl), as we were told in the hospital. I'm cautios about changing that, since a change there would mean more Insulin in the Bolus Wizard. His target range is set to 100 both low and high, also from the hospital, so whenever he's above 100 the pump delivers more insulin to bring him down to 100. But then again, maybe he needs the insulin and that's why I've had to increase the bolus factor... There are so many settings intertwined that it's difficult to keep the overview of what has to be changed when...
     
  7. scarral

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    Well the diabeticians in the hospital do have experience with the pump itself and all that, where they become cautious is with the sensor settings, especially what has to do with the SmartGuard. We were told to call them every time we thought we had to change things like basal rates or bolus, to double check if it was a good idea. It turns out that it takes me up to three days to reach anybody, and by then I already solved the problem... So now I play around and see what happens.

    The Medtronic representative told me she can't give me any medical recommendations, and the diabeticians tell me I just have to play around with the sensor SmartGuard settings until we find the ones that work for us. Only I don't know exactly what the goal is. Is it ok if the pump stops several times per day, as long as he doesn't drop too low too often (and what is too low) ? Or does that mean that he's gettong too much insulin already? How about how high he can get after a meal? Is anything below 250 reasonable, or is that too high? The only thing we were told in the hospital is that he should be below 180 mg/dl two hours after eating and below 100 after 3 hours, but nothing about what can happen in between.

    I checke the stats in the pump, and sensor readings have been below 70mg/dl 7% of the time, although sensor readings are not necessarily BG readings... Does that sound reasonable?
     
  8. scarral

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    Mmmhh. Adjusting the basal rate 10% at a time doesn't work for us. His highest basal at the moment is 0.15 insulin units per hour from 22:00 to 01:00, the rest of the time is lower than that. The smallest step the pump allows is 0.025... Unless there's a hidden setting that allows for smaller steps that I haven't found yet.
     
  9. quiltinmom

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    Then just use the smallest increments you can. I forget how little insulin the younger kids need. My Ds can easily have 10 or 15 units for a single meal. :)
     

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