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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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    I do miss the times that people respectfully held their tongue. I miss the free flow of information. but it is a 2 way street that has to be minded, both ways.

    In this digital age it is super hard to do so.

    We are brought here with the common thread of T1D, yet we have stay at home moms/dads with PHd's and those that for what ever reason didn't make it thru schooling. Those that want to be there but can not and have to entrust the care of their child into possible less capable hands. Those that are able to leave their children in more capable hands that can learn and know the child better than the family they return home to.

    I myself came here with not much more than my high school diploma, I continued my studies and actually entered Nursing school. But I missed the life I got away from, and I choose life and to forgo my further education to be with my family and children.

    I have the grasp of a lot of "ideas" but lack the breadth and depth of many things. But, I still feel that I can rattle a few extra thoughts out of people. Even if I am wrong in my idea, it might solidify another in theirs?

    I have learned over the last 10 years so so much, so much from CWD. I hope to continue to be back and posting with little tid bits like I used to when I learned so much.
     
  2. forHisglory

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    ???? Not sure I understand the first sentence. I made a positive statement so I may not understand what you meant. Diabetesmama wrote a very caring post. It had me in tears. It is so important to see the child vs the ugly face of T1D. I think it could speak to a lot of us. It's a blessing to stay home with your daughters. I have made that choice as well, for this season other than some relief work I do. I'm so thankful for that flexibility.
     
  3. rgcainmd

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    Perhaps I flatter myself, but I'd guess that comment was directed towards the likes of me.
     
  4. Theo's dad Joe

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    I see them. And he's at a charter school 45 seconds from my front door, and I am free at lunch time, so I usually set a higher alarm and am waiting if he does get one. It's tough though because he will come in 45 minutes after lunch with food in the tank and an alarm and an 85 fingerstick. At that point he's not supposed to get a correction and I'm not going to throw a snack on top of lunch, but his alarm recalibrates under the alarm setting I don't want him to be unable to get additional alarms and not know it. There is not a nurse, but two medical clerks who are also secretaries and they will follow any plan I lay out, so I think I am going to have them set a phone alarm for 20 minutes in case that happens. His share phone in in the hall in his lunchbox and it picks him up all but 30 minutes of the day and they can just take a look and make sure its moving back in the same direction.

    He is toggling between seeing a drop on pre-bolus and not seeing one for the last few weeks. It seems that that might be a sign of the honeymoon slowly going down as he will go 2-3 days where he doesn't seem to get a first response from his pancreas, and then he will have a few days where his blood sugar does go down first.
     
  5. Theo's dad Joe

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    I wanted to mention that my entire plan from the start was to work everything around his natural pattern to avoid lows at school, to not mess with preboluses when they were problematic and to let him bolus and eat normally and then get on with other things. It is my opinion that he is minimally impacted. Also there is not a lot of flexibility at his age. He wakes up and has to eat for school pretty quickly. He eats about every 4-5 hours and goes to bed. He needs 10 hours of sleep.

    The prebolus drop has been disappearing and reappearing recently over a 2-3 day period, so it may be his pancreas losing that first response to food, or other changes. I will add something else that seems unusual. If he has an unbolused snack, he WILL peak in the 1-2 hours period, usually just outside an hour (if I trust dexcom). That goes for higher fat or lower fat. Fast carbs are even faster. So we've had a few occasions to have unbolused snacks of some substance and the peak is not late. It is right as expected. Also in the early honeymoon period when his pancreas did a lot, he seemed to be highest within 2 hours. Before the honeymoon he definitely peaked within 2 hours. It is only with the meals now requiring much higher bolus that he is peaking later and I still think it is a basal conundrum. He will be HIGHEST 4 full hours after lunch (obviously lacking basal 3-4 hours after lunch) but his basal is really the only problem that I have excruciating issues with. If you wouldn't mind, I'd like to explain that quickly in the next post.
     
  6. Theo's dad Joe

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    SO I am taking all of this advice to heart. If you have ANY IDEA , PLEASE help me figure out what to do with this issue.

    So I am finding it a little calming to just go with the flow during the day right now. If he's a little higher coming into lunch that's fine, and I just correct everything at dinner and reset. His peaks actually seem to normalize when I can add basal but that is the one real problem that I have dealing with right now. The main change in the last 4-5 weeks is that he used to manage the night perfectly on minimal basal, not enough to cause lows at night, and we just bolused hard in the day to make up for lack of basal.

    SO I've tried to get him up to 5 Lantus, and put it in the morning hoping to help duiring the day. It seems to lessen the late peaks from meals.

    BUT here is the trouble I'm having. His night time pattern is all over the place with 5 morning Lantus.

    Here's the last 5 days occurrances. Basically I will always do a fingerstick 4 hours after dinner, or a little earlier and watch on dexcom. He is in bed around that time usually though it is a little different on weekends or vacations.

    So with 5 morning Lantus, he also had about the same size dinner each time, and 3-4 units at dinner.

    Days 1 and 2 he was a little over 130 4 hours after dinner. He went to bed and basically may have settled himself down slowly to around 100 by midnight and then virtually flat till morning. One day he slid down to 80 in the last hour before waking up.

    Great, it looks like he can run basically flat at night with 5 morning Lantus.

    So day 3, same thing, he's 138 4 hours after dinner and in bed. He's 100 another hour later. He's 58 an hour after that and even with 7.5 grams of fast carbs he comes up to 100 and in 100 in the morning. Obviously I want to avoid night time wake up treatments if possible.

    So day 4, he has a surprise high 4 hours after dinner. He's about 190 at the 4 hour mark. Now eventually I suspect I will either correct right then, or wait maybe an hour and do a small correction, or use some kind of basal increase for a few hours. I don't correct and he does work down to 110 about 3 hours later and wakes up a little higher 130 in the morning (probably after depleting his pancreas bringing things down, I don't know).

    So last night, he is also 135 4 hours after dinner bolus. OK, do I expect it to follow like the first 2 nights or the third night when he went into the upper 50s after 2 hours? An hour later he is at 99 so rather than wake him up at midnight I just gave him a little snack, mixed protein, carbs, fat (12 fish crackers and a little almond butter, about 6 grams of carbs). I figured he could use the calories and I could use the sleep. So he goes up 50 points in an hour to 150 and spends most the night there. No real honeymoon help at all. After midnight he does start to get some help and comes to breakfast at 125.

    (by the way, until a month ago we always had 70-110 breakfast blood sugar, so I never had to worry about breakfast, or lunch either as he was not out of range at lunch for the entire first year. I can see how being in range 50% of the time is a lot harder now that breakfast and lunch are not toss ins.

    Anyway, what the heck do I do when he can be over 130 4 hours after dinner and one night he goes low in the next 2 hours and the other night he hangs 150 for most of the night with a 6 gram snack. I am a little concerned that he may have a delay in insulin release, maybe not his injected insulin, but his own insulin that is remaining-or maybe his pancreas is trying to help out but too late. He ONLY had low borderline insulin antibodies and not other antibodies (low borderline for the one that causes celiac. The insulin was considered to be right on the edge of positive while the celiac was considered to be only about 1/10th of a likely positive.) Anyway I guess I will just err on the side of sleep and avoiding lows and just let his pancreas do the best it can for as long as it can. I don't really want to snack him if he's 160. Are there autoimmune issues that can lead to a delayed release of your own insulin or of injected insulin? There was suspicion after dx that he had had reactive hypoglycemia after highs in the weeks leading up to dx

    Also, there is no way I could do this without the dexcom right now, or at least a couple of night checks or just running high all night.

    We suspected (after dx) that he might have had reactive hypoglycemia leading up to dx, high blood sugar from carbs, and a late over-response to bring down the high.

    I need to ride out this period where he has honeymoon help for a few days and then not. We've gotten 70 mornings and 130 mornings from the same lantus and the same 4 hour post dinner blood sugar, and we've had nights with NO correction and nights with 90 points correction between 4 hours post prandial and midnight.
     
    Last edited: Jan 26, 2016
  7. njswede

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    That looks very much like what we're seeing here. Unpredictable and inexplicable highs and lows when you could swear you've done everything right. I've stopped trying to understand it. I'm just doing my best to correct it and keeping his A1C below 7.0. You can only do to much being proactive and predictive. The rest has to be reactive and corrective...
     
  8. Theo's dad Joe

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    What would you do to manage the night time now if you had dexcom down?
     
  9. njswede

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    Dial in a zero basal for an hour or two. Gets him stabilized 80% of the time. A swig of apple juice if it doesn't work.
     
  10. wilf

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    You are making sure injection sites get moved around?
     
  11. Theo's dad Joe

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    Yes. First off, we use one arm for breakfast, the other for lunch and alternate legs for dinner or if we need a correction at another time.

    Second I try to move around on the arms and legs. At school lunch they use the right arm and go low and high on alternate days.

    He is small and doesn't have much real estate on any limb.

    Are you thinking that insulin can be coming out later, or that it may explain his higher doses? I was thinking about that.

    Again here is the oddity about his mealtime numbers. Uncovered snacks definitely peak him with 1-2 hours, usually even closer to 1. They give him a pretty predictable 8-9 points per gram. Even high fat snacks peak him in 90 minutes, but when the food is combined with insulin, it is down and then back up and then up higher and stop.

    I am watching right now an hour after his lunch shot.

    He was 160 at lunch so he got 2.5 for 35 grams of carbs (14:1) plus a half unit correction-3 units. He was not coming down at any noticeable rate at that point. We are now this minute 1 hour after that shot. He ate right away. He is down at 100 and just flattened off. The insulin is working, he's down from 160 to 100 in an hour with his stomach full of food. It really feels like the high insulin influx if maybe triggering some other hormone to work the other way, or produces some kind of follow up resistance.

    I almost want to cut his bolus and just see what happens.
     
    Last edited: Jan 26, 2016
  12. mmgirls

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    I asked somewhere in this thread but, I will ask again.

    What BG are you aiming for what is your target BG or are you aiming for a range? how are you figuring IOB?

    I think you are only giving corrections if over a certain number? are you subtracting insulin if under a certain number?
     
  13. wilf

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    Again, digestion seems slower than for most. Maybe due to a lower glycemic index of the food, or maybe because he is slow digesting.

    I am also thinking that injection site locations may be part of the issue. We were taught that boluses and corrections should be in the stomach/abdomen (quicker action), and Lantus in the thighs or buttocks. There is a section in Type 1 Diabetes by Ragnar Hanas which recommends against using arms at all, and using thighs for long-acting not boluses/corrections.
     
  14. Theo's dad Joe

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    We were told that the stomach was faster acting, so it could be used if you were higher, or peaked faster like after breakfast. I tried it for breakfast a few times but my son has virtually no stomach fat. He has never complained about any shots or fingersticks, but doesn't want stomach shots. If they had just told me to use abdominal bolusing from the start we would have gotten used to it. I read something about how with abdominal bolusing the insulin gets to the liver faster.

    Another thing is that the late rises only seem to happen as the bolus should be declining in action-out to about 4 hours. The late rise is never seen more than about 4 hours after a bolus.
     
  15. wilf

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    Ok, you have to consider your son's wishes. But I would avoid switching between arms and legs for boluses, if you want consistent results - and would go with thighs rather than arms.
     
  16. Theo's dad Joe

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    I will try legs for breakfast. The thing is that dinner is the latest riser and it is the one in the leg. Also I am not sure we have a choice at school. I will see.

    I was going to mention that I have tried post bolusing. We get faster higher peaks, and end up the same place in 4 hours. If I am worried about a true low I will do it. It almost seems like he needs a split, some upfront and some at 2 hours to bring it back down. Regular lasts a long time considering 3 meals and 10+ hours of sleep at his age. They will always be overlapping.
     
  17. mmgirls

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    I was thinking that Regular might be something for you to look at as a basal and bolus insulin, but not sure you would get great support from your endo practice. There have been many here that have used Regular (and NPH) with great success when they had advanced knowledge of using them as basal and bolus insulin's, Wilf is the first person that comes to mind. Have you read the book "using insulin" I think by John walsh?
     
  18. mmgirls

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    This is exactly what I think is happening. IF you happened to forget to bolus for breakfast I think you would "see" a normal BG meal curve. I do think it is the influx of insulin that your son's body is dealing with and showing you a "flat meal time BG", Then when the influx wains after the peak of insulin action so does your son's response and slacks off.
     
  19. Theo's dad Joe

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    I read using insulin. I asked about regular and they just said its not good especially for kids because it lasts 6-7 hours. I may end up just buying it on my own. You don't need a prescription. They call NPH a "monster" at the clinic. Well, basically they said that you have to eat like a machine. I remember that regular is often used in 2 daily doses though with an overlap peak I think between the two sometimes.

    I have looked back at older dexcom traces and every time we raised the insulin the curves started peaking earlier, like maybe 1:30 to 1:45. It seems like he really is just not getting enough bolus and his own insulin is not enough to take it down the other side, but my main issue now is the late drops at night WELL after dinner. My son just never seemed to need basal insulin. I had him on 1 unit at night only recently and flat all night. I cut from 2 to 1 because he would go low if he ate lunch more than 4 hours after breakfast-he wouldn't go low within the 4 hours but he would trail off into the upper 50s in the 5th hour after breakfast if we ate late-that's with 2 bedtime Lantus. Plus when I dropped it to 1 it stopped.

    When I went up in Lantus to 5 in the morning 2 weeks ago his meals actually seemed to have normal peaks again. He peaked inside 2 hours and came back down, but it regresses to the later peaks. I am not sure it is digestion at all, just not enough insulin during the meal period. When I had him at 12:1 at lunch last week, he peaked 90 minutes into lunch (at only 118) and had to have extra carbs, and didn't end up high later. Every time I added insulin his meals started looking normal again it looks like, it is just that he seems to have that hormone bump around 7:00 pm which I thought was related to food. It does not always happen.

    I am not going to mess with ratios. I'll let his pancreas work for a while and do corrections if needed and let him go to bed a little higher. I am nervous because we haven't even seen a 240 blood sugar yet, f.s. or cgm. Yesterday was just our third day with a dexcom average in the 130s. Today will probably be our first in the 140s. It may sound bad but it is in a way healthy for me to see them.
     
    Last edited: Jan 26, 2016
  20. Theo's dad Joe

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    I think that the solution is going to be extending the bolus, with some prebolus and some later, and also to get his daytime basal higher but be able to dial it back in the night for now. I am pretty sure he needs about 6 units of basal between 6:00 am and 6:00 pm, but only maybe 1.5 on the other half right now, let his pancreas do most of the work at night. It gave us a great year, but I should have relaxed more. Eventually the basal might even itself out. I am also pretty sure that his early lower numbers (after meals) are that he still has a strong amylin response and it lets his food out little by little. I am a little worried that there may be a small disfunction there because I am sure now that before we got dexcom he was dropping into the 50s on preboluses before coming up. There have also been days where he didn't seem to be getting as much from his pancreas and he did rise right away after dinner-so I think it is still the stomach emptying control that he has. He has grown from 47 to 53 pounds in the last 9 months which is a year and a half growth and he's gotten significantly taller.

    The thing I know for sure right now is that he needs a lot more insulin in the day than at night, and Lantus doesn't seem to be able to provide for that. I also think that I need to be able to back off on the night time basal under certain circumstances. I don't think I should be afraid to put him to bed at 130, 4 hours after dinner. I hope that resolves. We've had him drop at night with 4 lantus, and not drop with 6 so that's the main concern now.
     
    Last edited: Jan 26, 2016

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