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feeling like a lousy pancreas

Discussion in 'Parents of Children with Type 1' started by kail, Jan 9, 2015.

  1. kail

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    DD4 was diagnosed 13-14 months ago at age 3y2m. Obviously it was miserable but we did reach a reasonable steady state with our roughest times mostly during any attempted vacation/travel. From a few weeks after diagnosis until a few months ago we had pretty stable dosing. We started at 1:60g for humalog for meals and 1 u lantus. Initially that usually meant a half a unit for most meals up to .75 unit and this was actually more of an overbolus and we had to give her a snack of 10-15 grams within 2-3 hours or we had lows. That was a big stressful. Gradually her sensitivity decreased so that she could go 4 hours between meals without needing snack but we just stopped the snacks and stayed on the same doses. The lantus bumped up over vacation last May when we were struggling and then seemed fine after she settled again so we left it. In early fall we tried a couple of tweaks. We tried dropping ratio at breakfast to 1:50 and had big lows so went to 1:55 and later we tried changing lantus to 2 with big lows and so edged down to 1.75 and seemed good. We are so used to tiny doses. Then in October she got croup and her numbers went sky high particularly after a dose of steroids. After that we have been rocky. Ratios don't seem to work. Something that seems ok one day is completely wrong the next. There are so many variables of course with the activity, type of food, amount of food etc that its hard to just change one thing. Just when it seemed a touch better and we had a whole week that was good then she suddenly jumped again with chaotic numbers followed two weeks later by some awful flu like illness. It seems like we are crushing the last remains of our honeymoon and it just sucks. We have stubborn highs that seem to laugh at my attempts to correct. We are adjusting ratios and being more aggressive but it feels so inadequate. We can't seem to find consistency. She is high much of the time now and more irritable but can't seem to figure out the right ratios vs lantus to keep us steady. We normally only give corrections at meals but in the past few days DH gave a correction a couple hours after morning humalog when she was up nearly to 400. the first couple times it worked well. Yesterday she dropped to 30 after 1:45 min. Yikes! Then after lunch she was back in mid two hundreds and rose to 365 before dinner! I guess I just slightly overdoses her for dinner and then I was up every hour or two all night because she was hanging at 75-85. I didn't want to correct as I was expected it to rise as it has been lately but I kept checking and it only went up to 100 and then drifted back to 85. In the end the numbers were good all night but I had to keep checking because I wasn't sure what was going to happen. Then my other daughter woke me up twice also. So I basically got 5 hours of sleep that was interrupted 3 times and I am at work and absolutely exhausted. I admit that we did not check her every night in the months that we were fairly controlled unless there was something unusual that day in her diet, activity or numbers. In the past couple months I check frequently and have gotten braver about giving corrections at night at least when I felt there was a troublesome dinnner like pasta that was still digesting. But it is sooooo exhausting.
    I am starting to worry what I might say when a well meaning friend or acquaintance asks me how things are going with DD. Everyone seems to think its just a one time adjustment and you learn what to do and then it is "controlled". Like end of story. Even when things were relatively good it wouldn't have been that crazy to drop to 50 and then up to 300s on any random day especially a party or something atypical. Today when I commented on how tired I was to a friend, she responded with "maybe you should talk to the endocrinologist. It sounds like she is not very well controlled." Yes, I have figured that out actually. And I have spoken to endocrinologist. And I am still losing my mind.
     
  2. Christopher

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    I have not had to deal with Type 1 in a small child like yours but from what I have read on here from other parents it can be very challenging. I am sure other parents with young ones will chime in with some better advice.
    All I wanted to say was that unless people live with this illness 24/7, they will never really understand what we go through on a daily (and nightly) basis. We do what we do to keep our children healthy and safe. I believe you will get to a place where it won't really matter to you that your friends or even family don't understand the reality of this disease. The uneducated comments will just roll off your back. As for the lack of sleep, if you have a partner maybe they could do the night checks for a while and give you a break?

    Hang in there
     
  3. Sarah Maddie's Mom

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    Well, after 12 years none of my friends get it either and it's frustrating. It's just flat out hard to manage Type 1 in a young kid and the transition times are especially hard. Don't beat yourself up, you're obviously trying hard to get things right.

    I'm not normally one to suggest a tech solution as a cure all but I'd seriously consider getting a dexcom and seeing if that doesn't make everything easier and safer while clueing you into the data you need to make basal and ratio changes. I really think it would help.:cwds:
     
  4. kail

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    Thanks. I know it would be easier with dexcom and I am working on it. I have yet to convince my husband that it is worth doing. My endocrinologist wasn't pushing it for us but is willing to do it if we want it. I guess he has seen alot of families that get it and then don't use it because they are annoyed with the inaccuracy and the alarms and he says that many complain that it hurts. Not just the insertion but that it continues to hurt. I haven't seen people complain about it here so I was hoping that was more rare than he says or maybe more with the minimed which I know he uses more.

    But in the meantime with no technology and only MDI to work with we are stumbling along. Its hard to know whether to tackle the meal ratios first and just one or all of them. She seems hungry lately too so her total intake and total carb counts have increased also. We have adjusted all of our ratios, the lantus and the correction dosing and are starting again with the ratios now. I am guessing I need to up the lantus again soon too since our total dose has increased alot lately. Endo suggested I try to level her out with a higher target for a few days so we avoid lows and some of the ups and downs of trying to correct too much. Then when we are more stable we can increase the lantus to bring it down into range. It makes sense I guess though more in theory than in actual practice. Some meals I feel like I am pouring insulin in and it does nothing and then yesterday with a 1 unit correction she dropped scary low. Now I personally probably wouldn't have given her that correction or at least as much but it worked great the other couple days this week with even a higher dose so I am not faulting my husband. And yes, I seem to get stuck with alot of the night time checks and that does need to change especially if he is not willing to get dexcom.
     
  5. KHS22

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    No real advice, just empathy. It sucks. And it changes from day to day sometimes. And its exhausting, and frustrating. And no one who doesn't live it, gets it.

    I get it. And I'm sorry you are living it. Hang in there, deep breaths, care for yourself, cry if you need to! :)
     
  6. Megnyc

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    Just about the dexcom, it does hurt a bit to put in. Just a brief pinch. But you can use EMLA cream to numb the skin if you want and your daughter won't feel a thing. You can't feel it at all once it is in. The wire is the size of a human hair. Very small!!

    Here is a video of an adorable 5 year old getting her dex site changed:

    https://www.youtube.com/watch?v=-sZp7CsmmmM

    Here is another one with the older dex:

    https://www.youtube.com/watch?v=Z5x4M9kg-BY

    If you join the dexcom facebook group there are a lot of parents with kids as young as 6 months old on the dexcom and they post pictures of it on their kids and offer tips. People with little kids seem to be especially thrilled with it.

    Good luck! Sorry you are having so much trouble.
     
  7. Sarah Maddie's Mom

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    A decade ago I might have agreed with your endo but I really think that that attitude is way out of date.
     
  8. kail

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    He is definately more old school and not as pro pump/cgm as some endo but also willing to do it if I want it. I suspect it is also influenced by the population that goes to this medical center. Not sure. or it may be that he is more used to the minimed which many seem to find less accurate. I don't know. He can only comment on what he sees and since he does not use them alot I suppose his experience is slanted that way. In some of our conversations it sounds like people are disappointed that they still need to test and that it is not exactly the same. Of course it would be nice if it was but I am ok with seeing trends and not perfect numbers. It would be huge to see if it was dropping or to know if we could take older sib to school and then come home and eat breakfast or if she needed to be fed right away. And of course the nights. But honestly I am not complaining about endo keeping us from it. It was quite easy to convince the endo that I want dexcom. It has not been so easy to convince DH.
     
  9. MomofSweetOne

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    If you can afford it, I would highly recommend working with Integrated Diabetes for a contract to get things sorted out. We work with Jenny Smith, and we can send data daily when we're having confusion. She lives it and gets it. I know how to make adjustments myself, but I've found that when I'm exhausted, I don't catch things as fast and the more sleep-deprived I get, the harder it is to see the things that need changed. For us, Jenny is a very important part of team. My teen texts and emails her as much as I do, and she'll be there during the transition from peds to adult endo as a stable, trusted constant. For both of us, Jenny is there both for the physical and emotional stresses of D.
     
  10. Beach bum

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    My daughter was diagnosed at 4 years 1 month so I completely understand what you are going through. We moved to a pump as soon as insurance allowed, and IMHO was the best move for the entire family. It allowed for blousing for the constant grazing, adjusting basal based on activity, illness or just the fact that she was 4. It didn't end the sleepless nights, but it sure helped in the ups and downs of BG's.

    Two years ago we got into a CGM study and again, it was the best move for the entire family. She was 11 when she got it and she was wanting more freedom. OK, lets try it. Oh how we wish that technology was available when she was 4. As Sarah said, technology isn't a cure all, but WOW. The CGM is such a helpful tool. There are actually some nights I can sleep through the night with only a quick look at the receiver and then roll over and go back to sleep. It has also caught some particularly dangerous lows, but it has also alerted us to lows and highs coming up. For us, it was a game changer and it actually helped improve the overall quality of my life because it allows me to sleep just a little bit better.
     
  11. aprilodell

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    I am completely new to this, but since i have been in so many classes lately and I feel honored to be working with such a great diabetes team at the Barbara Davis Center I will tell you what they told me about adjusting and about goals. I will say they have made this transition easy in the sense that they are so amazing and so supportive. They explained this to me:

    adjust the Lantus if the morning is high or low. Adjust the ratios by each meal, so if the lunch number is not where you want it change the breakfast etc. I am sure this is just review, but sometimes reviewing things helps. They do not promote correcting unless the corrections are 3-4 hours apart if you are on MDI as you don't want to stack. They suggest never going to bed with a BS under 130, if it is under 130 have a 15g carb snack.

    We are only a little over 2 weeks in and have not seen big lows, but have seen big drops in a short period of time which have completely changed my son's personality, he is almost 14 and hard to know sometimes if he is being a teen or it is now this diagnosis of diabetes. We should be entering the honeymoon phase soon and they so we are watching for the lows. I get the sleepless nights I went from leaving my son alone for a whole day to now getting up at night with him and also having to have someone here if we go out, as he cannot give himself his evening lantus. We go to our 1 month followup and will be looking at pumps and cgm's at that appt, our diabetes center, is all for them and does it early.
     
  12. mwstock

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    I am sorry to hear that you are having a tough time. It is a learning process over time. My son was diagnosed at four and is almost ten. The first three years was tough. The insulin pump has made a huge difference. Regardless of shots or insulin the underlying concepts are the same. The lantus (or basal rate on the pump) is the foundation or starting point. Next you focus on the carb ratio for each meal. Then you can focus on the correction factor (most likely you were given a sliding scale for corrections). Fast acting insulin has a duration around four hours, it is important not to give corrections within that period because the insulin can stack up and contribute to lows. The CGM is nice to show patterns and dial in basal rates. It can observe the blood sugar during the when you are sleeping. Unfortunately you get real time information, so you may have the knee jerk reaction to give insulin during the four hour duration period. The fast acting insulin does not act that "fast". It sounds like in your case you may need more lantus if there are a pattern of high blood sugars. This should be based on the fasting blood sugar first thing in the morning. We have had steady blood sugars since finding the right balance between the basal and Bolus insulin. Basal testing is very important. The basal (lantus) dose is correct if the blood sugar does not rise or fall more than 30 points. So if your child does not eat, the blood sugar should be steady. Hang in there!
     
  13. sszyszkiewicz

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    Not a lousy pancreas...but a tired one. I am a few days late to the party here but one thing is certain, when you are tired everything is 10x worse than it really is, and decision making is affected, often for the worse.

    We entered t1D world when my son was 11, so I dont have experience with little ones. What I do know is that modest adjustments can make big differences with a pre-teen so that must be doubly true for a little one. So as dark as things seem, there is always something to try, and you are likely an adjustment here or there away from a solution.

    So gather data a little more often for a couple of days. The basal testing someone mentioned is a good idea. Share with your endo, and I bet you will get into a groove again for a little while.

    With my son, when the roller coasters start, Lantus goes up by 10% and it flattens him like a pancake.
     
  14. susanlindstrom16

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    Just wanted to throw in some support. With so many variables to consider, Diabetes can be incredibly frustrating to manage, especially in such a young child. We've been having a bit of a rough patch lately too, trying to figure out some changes in my daughters numbers. Its hard when you feel like nothing you are doing is making a difference. And nobody really understands except those who have done it themselves. BUT- I'm sure you guys will get it worked out and get through this. And with every challenge, you learn more and will be that much more prepared for whatever comes next.
     
  15. kail

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    I just wanted to thank everyone who responded for the support. I really appreciate the suggestions and encouragement and most of all the understanding of those who have been there too. Things were a little better over the weekend. It helped that I got more sleep on Sat thanks to sleeping in Sun am! I felt so much better after that. I think it also helps when I am home making the decisions. I am not right any more than DH but its more stressful for me when I am not home. And not because I don't have confidence in DH but its less stressful when I am there to make whatever decisions even if I am wrong. We had better numbers yesterday all day than we have had in a month but a bit up and down since then. A work in progress.

    I do have another question I guess if anyone is still reading this. How do people (on MDI) make corrections between meals. Doesn't this completely mess you up when it comes to the next meal? I know every says not to do corrections more than every 3 hours but you can dose for carbs. But I am still uncertain. If we dose for breakfast carbs but NO additional correction then can we give a correction dose at anytime or do we need to wait 3 hours from the breakfast dose? But then if we give a correction dose that is 3-4 hours later but not with the lunch dose then how does that affect the lunch bolus. currently we pretty much just bolus for meals and include a correction if needed at that time. We don't bolus for snacks and rarely correct in between meals but I feel like I am reading on this site that people are giving corrections all through the day and also bolusing for snacks at any time. Any advice?
     
  16. Christopher

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    Generally speaking, think of insulin for corrections and insulin for food as two separate things. If your child's bg is high between meals there is no reason you shouldn't try and correct it. The insulin you give will be working to bring down the bg into range. If there is a meal in between that time, you would give the normal amount of insulin for that meal because that insulin is only working to deal with the carbs eaten. Obviously, nothing is absolutely clear cut as described and there can be overlap, but for the most part it usually works out OK.
     
    Last edited: Jan 13, 2015
  17. kail

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    Last week we dabbled with this and it did not go well. We were increasing the ratios so I advised DH to check DD about 2 hours after her breakfast humalog dose (which we don't usually do) to make sure she was not going low. Instead we saw shockingly high numbers and so then he tried to give a correction dose and then we ended up really low. It was less than 3 hours though from the morning dose though so I figured he should not have tried to correct when it was that close to breakfast. I think another time she went low after lunch and I was thinking it was the stacking of a correction dose before lunch and the lunch dose combining. That just got me wondering how people give doses in between meals unless they are going 6+ hours between each meal.
     
  18. Christopher

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    Diabetes management is definitely not an exact science and is sometimes closer to an art than science. I think you would need to look at all the variables in your example. What did she eat for breakfast? Is it possible that there was food on her fingers when her bg was checked after breakfast that might have caused a false high reading? Were there any other things that could have caused the low, like did she get a lot of exercise after the correction, or a hot bath?

    Or maybe it really was the insulins reacting to each other and if you consistently see the same pattern of going low then you would need to change your correction factor when you do a correction 2 hours after a dose.
     
    Last edited: Jan 13, 2015
  19. sszyszkiewicz

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    We are mdi, and prior to the Dexcom we would wait at least three hours after a bolus before we corrected. If at 3 hours we checked and saw a 225 or better we would correct. Although they call it fast acting insulin, its not really that fast. It is working for about 4 hours. So at hour 3 you still have some insulin around doing its job, but its starting to taper off become exhausted.

    Before we had a dexcom the morning routine was bolus for breakfast at 7, correct/bolus at mid morning snack at 10. Bolus for lunch at 12. Check his numbers at 2 and again at 3 before he got on the bus.

    Alot of it depends on the food and activity but that generally worked. we tried for relatively low carb snack at 10 to take some variability out of it.
     
  20. kail

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    Ok. Thanks for those responses. I suppose the fact that we are still trying to sort out our meal ratios and our correction dose is a huge variable that I can't set aside to assess the affect of the insulin overlapping. There weren't any unusual factors like exercise or bath or the like to cause the low but I understand that it is difficult to generalize when there are so many factors. I am still trying to get my head around the post meal spike and when to worry/correct. Our recent problem examples occurred when we checked her about 2.5 hours after eating and 2 hours after her humalog. We have not been prebolusing so I know that contributes to a big post meal spike. I suspect she often has a big spike (that we don't see because we don't look) but comes back down to a good number before lunch. Lately of course we have been higher. So since he saw the big post meal spike, DH responded by correcting her when she was only 2 hours post humalog when there still some activity and I assume gave too much. I can see in theory how the correction and carbs should be separate issues but when the humalog from breakfast is still working it seems like that would have to be factored in. And then if she eats lunch a couple hours later (after a mid morning correction) then it seems that I would have to adjust my lunch bolus to account for the insulin still working on the premeal blood sugar. UGH. I know its never easy but without a pump this seems really difficult. Perhaps it is more of a problem since we are dealing with tiny doses. We used to consider that a unit would drop her about 250-300 though I am sure thats changed. Maybe we just need to stick with waiting at least 3 hours for correction in afternoons when there is a longer time between her meals and correcting only at lunch for the morning and adjusting to try to prevent the problem the next day. Any other opinions appreciated.
     

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