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Does this look like Somogyi?

Discussion in 'Parents of Children with Type 1' started by Theo's dad Joe, Jan 21, 2016.

  1. mmgirls

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    You stated earlier that he has over 100 carbs a day so clearly I know he is not on a ketogenic diet. I was asking to see if he did wake with fasting moderate ketone that would indicate to me that he probably could stand to increase basal unsulin.
     
  2. mmgirls

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    OK so I think increasing basal may help with your 4hr rise you see. But also wonder what you might gain by moving the timing of meals to shake out if it is a basal issue or not? Or if it is his honeymooning responce?
     
  3. Michelle'sMom

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    60+ comments on this thread, all discussing 1)a graph I wouldn't consider to remotely resemble a rebound & 2) trying to improve on what, by even the highest standards, seems to be a remarkably well-managed, honeymooning CWD.

    No matter how much you think you know about how insulin & carbs are metabolized, or how much insight you gain from researchers/experts/books, the simple fact is that it's impossible to achieve perfection in controlling T1, at least with the tools we currently have. You may or may not have better results with a pump, but it would most certainly give you more control over the insulin than you have now.

    If & when you make the choice to switch to a pump, I encourage you to give the T:slim a long look. With the dosing precision you're trying for with MDI, you'll love the minute dosing capability.

    Personally, I print out graphs that look like the ones you've posted here. They're so few & far between, I save them as reminders that every now & then we really can defeat the beast.
     
  4. Theo's dad Joe

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    I may try to move meals around. My entire GOAL here is flexibility, but in reality, we have breakfast by 7:30 for school, lunch at 11:30 at school and dinner around 4:30-5:00. A 9 year old is generally recommended to get 9-11 hours of sleep at night, so there isn't a LOT of movement possible in a 13-14 hour period with 3 meals anyway. On vacations I've even tried bolused snacks with 4 "meals" though it makes correction factors tougher (I will guess at IOB and only correct above what that might cover).

    I have no problem doing corrections, treating lows etc, its just that when we get blood sugar LOWER for 1-2 hours after a meal and then higher later it is hard to tell when to treat or correct. I want to be able to go to Disney world in the summer and not think about eating on a precise schedule and not knowing when he needs to get extra carbs when he is 85 an hour after a meal but going to rise later. He had 0.2 ketones max in the morning sometimes. I tried 6 lantus in the morning and he was 72 all night and I haven't learned how to deal with that yet.

    More basal has tended to smooth out late rises, though he is not rising after 4 hours, just in the 4th hour. And again it may be hormones. Even in the full on honeymoon with 30:1 ratios I would catch him at 175 4 hours after dinner after being under 100 at 2 hours.

    Another problem I have is that he comes to school lunch and goes low in the first hour even though he eats right away. He only goes low enough to set off his alarm but he's not old enough to ignore it yet, and I don't want him having to go to the office for 25 minutes and maybe getting a correction that puts him over 200.

    I know he needs more basal in the day now, but the difference between day and night is pretty high. With 5 morning Lantus he has been waking up around 75 in the morning, but it seems to be too little in the day (or else his ratios would be higher I'd hope) but he does NOT rise more than 4 hours after a meal. 4 hours after dinner he may be at his peak at 140, but he always goes down 4 hours after bolus.


    I give him a bolus for his meals and don't calibrate dexcom and he is down 20 points in 15 minutes every time. That is why I think it might be so string it causes a kind of rebound resistance in the later 2 hours, but I am also concerned that maybe there is a digestive issue. He has always been in the bottom 5% for size. But he doesn't like get a straight down arrow with prebolusing, he just is lower than he started for 1-2 hours before he rises, (with rises fairly mild, averaging about 150-160).

    Again, I want to bolus, feed, treat, correct, but its not working for us in that order when his pattern is so backwards.
     
  5. Theo's dad Joe

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    I appreciate that a lot and will look at T-slim. I want you to know that I would take a heckuva lot worse graphs if I got patterns that made sense in terms of when to treat and when to correct.

    I raised his basal two months ago thinking it would make his ratios better (12-16 to 1 at the time) and because the doc said that his ratios were as low as I should go and they were abnormal for a 9 year old especially with such good numbers obviously in a honeymoon.
     
    Last edited: Jan 23, 2016
  6. Megnyc

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    ^^^This.

    I'm an adult who has been doing this for many years, I use a pump and cgm and I haven't had an A1C over 6 since I switched to the dexcom a few years ago. The graph you posted is significantly better than 99% of my CGM graphs. My average blood sugar is around 115 and I have not had a night as stable as the one you posted in at least a year. And that is with the dosing flexibility of a pump and tons of experience with basal adjustments. My suggestion would be to either relax and enjoy this time and/or get a pump because you probably could bring those nighttime numbers down with a bit more basal at night.
     
  7. rgcainmd

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    Please, for the love of everything Dexcom, can we please, please put this thread to rest? If I have to read one more of Joe's posts on this topic, my eyes will melt.
     
    Last edited: Jan 23, 2016
  8. mmgirls

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    Is there a reason you are not pumping? The ability to combo out the bolus to give let's say 25% of the bolus at the beginning of meal and the rest over a half hour or hour would help what ever reason for the flat 1 to 2 hrs of numbers, whether it be a too strong of bolus or a slow digestive issue. If there is a particular reason to not pump there are many other insulin to be utilized and things like the " I port" to ease MD I pokes.

    I hope you can find the pattern that allows you to be more carefree and not worry as much.
     
  9. Theo's dad Joe

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    So tonight he is 130 4+ hours after dinner bolus and two hours later at 11:00 in bed he is 62 by fingerstick after dex alarm under 70. This is with only 5 morning Lantus. No physical activity. Three nights ago he was 70 for 9 hours after being over 140 4 hours post dinner bolus so I cut morning Lantus from 6 to 5. I had to wake him up for carbs at 11:00 pm. I had to wake him up but just 5 grams of glucose which last time put him over 150 in 90 minutes. And that basal got me basically 10:1 carb ratios today for his meals.

    Edit, nope, up to 95 back to 60 by 3:00 am. More carbs.
     
    Last edited: Jan 24, 2016
  10. Michelle'sMom

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    I apologize if you've already answered this but have you considered trying Levemir in a split dose instead of Lantus? My daughter's regimen included NPH so very different from "standard" MDI, but we had much smoother numbers overall with Levemir. Also, what are you assuming his DIA is on Humalog? My daughter has been on all 3 fast-actings & we found Humalog to have the longest DIA for her. In fact, the longer tail of Humalog is why we prefer Novolog.

    During the honeymoon we didn't have a CGM (I'm really thankful, in retrospect.), but our main concern was not having lows.
     
  11. rgcainmd

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    What do you want from us? A magical answer? Most of us have been there, did that, during honeymoon. Your son's experience is not unique. Ride the waves or get a pump. And then surf the waves. Correct and move on!

    Take deep breaths and repeat the following over and over for as long as it takes: "I can't fine tune basal without a pump. I can't fine tune basal without a pump. I can't fine tune basal without a pump..."
     
    Last edited: Jan 24, 2016
  12. Theo's dad Joe

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    Regarding DIA, I usually don't expect much drop after 4 hours. It is pretty bizarre though and hard to sort through with honeymoon. If he takes a half unit correction, he usually corrects about 50 points in 90 minutes but then stops dropping. Possibly because its small. With meal boluses, he drops almost immediately on CGM after shot, like 10 points within 20 minutes, but then he has these peaks late at 2 hours or a little later, and slowly comes down until about 4 hours. Basically meals and boluses seem to be interacting over about 4 hours. I always checked him after 4 hours after dinner if he was in bed, though the guidelines I was given were that if he's over 130, 3 hours after dinner bolus he should be fine to go to bed and should not get a snack if he's over 130 (I was specifically told that) unless he was exercising hard that evening.

    I have also been told that duration of action might not be the same as the time the insulin is in your system, because if insulin is turning off things that make you more resistant (like fat mobilization and gluconeogenesis) then you can be more sensitive to basal insulin for 5 or 6 hours because those things take time to turn back on.

    Do you get meal blood sugar curves that go up and come down in say less than 3 hours?

    I gave him is shot for breakfast at 7:45 this morning and he ate at 8:00. He started with a blood sugar of 99. It is now 9:00 and he's gone down to 80 and is right now back up to about 95 an hour after eating and just now getting a diagonal up arrow. It goes against everything I read (Scheiner et al) about what blood sugar curves look like. Scheiner talks about 1 hour post meal spikes as being a good measuring stick of blood sugar peaks, but our average 1 hour blood sugar is equal to or lower than our pre-prandial blood sugar.

    I have also read that Lantus may have a second peak at around 12 hours.

    I think that his honeymoon is really going in and out right now. I was sure he needed 7 -7.5 units of basal and now he probably needs 3-4 again. But he was 11:1 covering carbs and he had stretches where he needed 7:1 to 9:1 but was staying 100 all night with 2 units of Humalog.

    Even if I pump right now its not like I can tune in his basal. I could at least tune it back if I see things happening.
     
    Last edited: Jan 24, 2016
  13. rgcainmd

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    And exactly why couldn't you tune in his basal if you switched to pumping? If you've never pumped, how do you know? And if you have the answer to that question, then you clearly know everything and you can stop asking this question OVER AND OVER!

    Look, if you don't want to pump, then don't. Just keep hitting your head against the wall repeatedly, asking why? Why? Why? There will clearly be no answer for you. EVER. Because you will NEVER make your son flatline 24/7 for the rest of his life. Why? Because you're dealing with Type 1 Diabetes, for heaven's sake.

    Children learn by the examples we set. Do you want your son to spend the rest of his life, hitting his head against the wall 24/7 because he can't figure out how to flatline endlessly or because he cannot find an answer to every single why? Do you think he will be healthier if he does so? I think he'll end up just as endlessly frustrated as you are. I would hope you would want better for him.
     
    Last edited: Jan 24, 2016
  14. Michelle'sMom

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    A lot to try to reply to in that single post but here goes. These are only things I would try. If you already have, I missed the details somewhere.

    Almost always, but we prebolus by as much as 30 minutes (depending on meal content) & wait to see a drop on Dex before eating. All meal boluses are extended, usually 60-70% up front & the rest spread out over 2-4 hours depending on fat/protein source.

    With Apidra, we saw DIA at 2-2.5 hrs. I have absolutely no doubt that it was finished in that time. We also couldn't prebolus by more than 10 minutes without her going low during the meal. At times, it actually caused problems similar to what you see, with the late spike. I believe the Apidra was actually wearing off before the meal was digested, even before we added the Metformin. Humalog was a nightmare for us because of the tail dragging out to 6-7 hrs. It was also very slow & we could never time the bolus right.

    During the honeymoon, we used Dex4 Gluco-bits, a 1 carb glucose tab. If her BG was under 110, she took her meal shot & & a tab. It kept her from dropping too low before the food hit, but wasn't enough to cause a bad spike.

    We also started the meal with the faster carbs/higher glycemic foods. We experimented with giving the shot 15 minutes after the start of the meal, but it only worked for a very few foods.

    I didn't like Lantus. It had a horrible peak that seemed to constantly move. We did see a small peak with Levemir, but it was much easier to manage & her numbers were much smoother overall, especially after we split the dose.

    I agree with mmgirls in that what you're seeing looks more like a basal issue because of the timing of the spike, but you have very limited choices with MDI in what you can try. Unlike some, I'm not a pump pusher. Have you noticed the main marketing point for pumps is the flexibility of eating when you want? It's the biggest draw for most parents, other than the fewer needle pokes. The one advantage that drew me to pumping was actually have some control over the insulin. It isn't perfect, but it's closer than MDI.

    I would have to disagree with you that you wouldn't be able to tune in his basal on a pump. Read through a few threads here & you'll find there's a huge difference in how the body reacts to pumping a continuous basal compared to injecting long-acting. My daughter was on 2u Levemir split, & TDD of about 5u/day when she started pumping, in a very strong honeymoon. After 2 months of not getting the results I wanted we "toggled" her basal settings, something I learned here. Basically, she was on the lowest basal setting & it was still too much, so we played with timing & ended up with a 0 basal every 2 hrs. It worked, & totally confused her endo.

    About a year into dx, I stopped taking the endo team's word as gospel, stopped reading so many studies/books etc & realized that 1) most of the data available about T1 management relates to studies of adults, & 2) none of the data consider the numerous differences in individuals. My daughter does not & has never fit the typical profile of a child with T1. There were times during the honeymoon that 1g of carbs spiked her 100 pts. The endo team insisted that was impossible. Considering she's on Metformin & has significant insulin resistance, that doesn't make sense, but it is what it is. When you first came here you made a slightly insulting comment about leaving me to my intuition. What you're seeing in your son is exactly why I keep saying T1 is more art than science. Your intuition, especially with your background, is biased towards relying on the science. IMO, it hampers you because T1 really doesn't give a damn about the science & rules. I think I'm actually grateful my background is not in science. I'm positive my single-focused perfectionism in the beginning would have been much worse.

    Stephen Ponder (ped endo, T1 for 50 yrs & author of Sugar Surfing) uses a quote in all his presentations to parents....don't overlook good in your pursuit of excellence. You should consider looking into his book, checking out his facebook page, & possibly attending one of his free workshops. To me, you seem to be a perfect fit for his idea of dynamic rather than static management. I don't necessarily agree with everything he says because he tends to lump adults & kids together, but no one can argue that his methods are effective. Surfing is not limited to pumping. His methods work as well with MDI, as evidenced by his string of remarkable A1Cs on both pump & MDI.
     
  15. mmgirls

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    Is it possible that you are giving your honeymooning kiddo too much bolus insulin and since his body is still really good having a counter regulatory response that you are making his body work super hard at clearing out the excess insulin? this could explain your strange meal curve of "flat non-d numbers" and then a rise at 2 hours once the bolus insulin has peaked? Could explain your thoughts about being tapped out with little or no stores. and what seems to be your daily, meal by meal changing of ratio.

    never ever heard Lantus might have a second peak, If you search CWD you will find a "poll" asking what other experience and I believe the majority that felt it does peak it was within 2-6 hours of injection. We saw a peak at about hour 2-3.5 from injection.
     
  16. Michelle'sMom

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    ^^Good point.
     
  17. rgcainmd

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    Joe, you clearly enjoy playing the ' "Why don't you ... ?" "Yes, but ..." Game'.

    Those who play this game clearly do not want answers to their questions.
     
  18. Theo's dad Joe

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    I can see why it looks like that but that is because I really have two different concerns here that are mixing together. One is "how to manage" difficult patterns that are emerging and the other one is "Does my son have something else wrong" given late spikes, a high bolus need and going low with very small basal. I appreciate your relentlessness and please see the following post.
     
  19. Theo's dad Joe

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    So I'd like to say that I appreciate all of the wisdom out there. I noticed at about 6 months, when Theo went back to school that I had less margin of error-he didn't clear off the last 30 points on his own if he was a little higher at 4 hours, he didn't always come to breakfast at 85, and some foods pushed him over 200 no matter how well I thought I counted. So in our journey, I got 6 months where I could do anything, and never saw a 200.

    Then he went back to school in the fall and he needed more insulin-A LOT. He went from 30:1 to between 12 and 16:1 but still corrected 20-30 points beyond the bolus time if he was higher. We got another great 6 months. Always 80-110 at breakfast. Never over 140 at school lunch so never needed a correction at school, only 1 low at school after being sick. That started changing right before Christmas. In November we had met with the nurse practitioner. She wanted us to up the basal because his meal boluses concerned her but she insisted that people have consistently been able to maintain excellent control with MDI.

    Anyway we got another 3 months of good results and EASY management to finish out the first year until he came to lunch out of range at school the week right before Christmas. Then again. It went away during break but came back when he went back to school and basically I got these troubling patterns-he couldn't handle more basal even in the morning, but he was needing 10:1 or even higher.

    So I called the endo because we have our next 3 month on Feb 11th and she suggested learning to pump. It made me a little annoyed because the NP had just told me how we could maintain tight control on MDI indefinitely if we did it right. It also scared me but I think you are correct that only pumping is going to allow the flexibility we need at least at this point and it is better to do it while we are still waking up in range. So I really have to do it. Sorry, tired need to take a nap, but thanks to all who took the time to post.
     
  20. Theo's dad Joe

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    That was one of my main considerations. I have actually seen him have a meal bolus for dinner and eat and at 90 minutes have a down arrow at 90, but then just as I was getting some tablets he would go flat at 70 and stay there for half an hour, then the later rise. In fact for a few months I could only give him 60% of his dinner bolus upfront and had to give 40% after 90 minutes to hole down the late rise. I just had never heard of someone "rebounding" without going under 70. I haven't actually raised his bolus ratios in 4 months though. He was 11:1 at breakfast, and 16:1 at lunch and about 12:1 at dinner. I KNOW that with less bolus he is higher at the 4 hour mark, so if I cut a half unit off of lunch he is 50 points higher at dinner. So maybe in a way I am covering basal in a round about way, but when he has skipped a meal like when we had a late dinner when travelling he was not rising more than 4 hours after the last meal. I think what insulin he has left is attacking the blood sugar rise right away, but it's getting depleted so that it is not covering basal around the 2-4 hour mark. Then the remaining beta cells recover and start managing basal again after about 4 hours or so, but he has plenty left to handle most basal at night, 4+ hours after dinner.

    Thanks for all of your help. I'd like to pump because I think it will help me do more family things and maybe manage around the unusual patterns, and have more control later on. It is going to be better to do it when we still have a margin of error. When his honeymoon decides to bring him down to 80 at night, and he has 5 units of Lantus, then it is a problem. When his honeymoon is not working for him then he stays higher at night.
     

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