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Is this stacking?

Discussion in 'Parents of Children with Type 1' started by Knittingfor4, Aug 8, 2012.

  1. Knittingfor4

    Knittingfor4 Approved members

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    Answers are above in red bold

    Working on it. I can change dr.s but not the nurses, dietician and social worker - they stay the same. May be changing insurance soon because of this and CGM issue...
     
  2. Flutterby

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    I would get the books recommended throughout this thread. I'm sure they are available at your library if you don't want to purchase them. I'd read them, and reread them.. Then I'd stop relying on the endo team. They don't seem to be helping you. At 4 years in you should be able to make changes on your own, adjusting ratios, correction factors, targets. If your endo team doesn't want you to do this, you need to ask them why. MOST endo teams want parents to be self sufficient, to be able to make these decisions on your own. Obviously when you do need help, ask, but if you're comfortable charnging a ratio if she's to high, or low, then go ahead and do it.

    When they are little, things can be difficult, but you've been doing this a long time.

    Whats her daily dose? How much of it is in fast acting, and how much of it is lantus?
     
  3. mmgirls

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    Well my dd is 54lbs breakfast is 1:14 (so pretty agressive) and the rest of the day 1:22, but she has a 9units of Lantus as basal too.

    when she was 5 going into kinder she was a little different. probably 1:16 breakfast and 1:30 rest of the day and a basal from the pump at around 7units.

    i think it is funny, not haha funny, but I am troubled with, the idea that the OP is scared of night corrections yet gives her dd LARGE boluses of fast acting and is not checking BG for uncovered snacks.

    Which brings me to the point of my next post which I will do seperate from this one.
     
  4. Knittingfor4

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    5 units is Lantus. Novolog varies from day to day. Today so far was 8. DH wasn't going to give a shot for dinner because she was low. I don't know if he gave any correction at her bedtime check, I'll check the meter when I get home.
     
  5. mmgirls

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    We started out allot like you, my dd was 13months old and I relied on my endo office to make changes, I only knew what i read in books allong time ago and was told. My endo staff was fine with A1C's if they were below 9.0. we often at the beginning let her go to bed at 300, we gave a 15 carb juice box if her number was near 100.

    But then I remember that things were changing faster and her numbers were getting worse, I called the endo and they were very helpful but I wanted to know how and why they were making the changes tht they were making.

    That is when I found this place and read (like you are doing right now) how different they did and "thought" about diabetes.

    anyways, I am wondering what you are going to be doing? Do you have any plan as to how you will be approaching making changes? how are you going to think about diabetes now that is different from before?

    I would try to make some changes immediatly that will help you see how you daughter is reacting to food and also insulin.

    You need to get a digital foods scale to be able to acuratly count carbs, you can get a cheap one for 10 that is just digital ,, or a"nutritional digital scale with a database" that will calculate the carbs for you for 50-100 dollars.

    You need to be testing in the late evening and overnight. 3hrs past her last fast acting bolus and every 2-3hrs till she wakes. Just for now so you can see if she really is dropping or going up or staying steady.

    You need to be logging amount of carbs eaten and the insulin given, time and also the amount given for correction. you also need to log if you gave carbs that were not covered. If she is going to eat you need to be testing again. at that age I was testing every 3hrs and eating and bolusing at the same time. before CGM we tested up to 10 times a day.

    If you did just those 3 things and came here with the information we could try to help you understand what changes need to be made and why.
     
  6. Knittingfor4

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    Well I'm not sure I have some big plan. I'm extremely overwhelmed with all this. My main plan is to just test like every 2 hours, log food and insulin and then tell you guys and her team. Change her dr of course. Try to get these doses straightened out. Get better control over her access to food. Read 3 books, get a mentor. Am I leaving anything out? Probably, I am basically changing our entire lives at a really bad time. Just taking it one day at a time at this point. Well, one post at a time I guess!
     
  7. Sarah Maddie's Mom

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    What is the "access to food" bit about? On the one hand you say that she hardly eats, on the other, it sounds like you suspect she's scarfing oreos.

    To be honest I find the whole situation really confusing. There are so many conflicting part to this story...
     
  8. Flutterby

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    Take one thing at a time. Start with basal testing--lantus. If you can, avoid a nightly snack, and active (dinner) insulin during bed time. It'll make it easier. Check every two hours. We're always told to do this two nights, to and compare results, although I think most people do one night of testing. Change lantus based on whats happening at night. Then move on to ratios.

    If she's sneaking food, give her a list of things she may eat whenever, cheese, lunch meats, veggies etc. and make it clear that no other food is to be eaten unless she asks first, explain why.
     
  9. sooz

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    She posted that she was still in bed this morning when the kids were already up and letting her DD eat. She posted that the boys are " allowed" to get food, so what are you going to do, essentially. Her sons are 11, 9, and 6 I believe. But then she went on to say there was a lock on the pantry, so I don't know.

    To the OP, do you work nights?
     
  10. sooz

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    One of the most important things you are leaving out is weighing or measuring her food and looking up the amounts of carbs in it, not just guessing that fruit has 15 carbs in it for example.

    You know, we all had to change our entire lives for our kids when they were Dx. It is not easy at first, but then when you get a handle on it it isn't so bad. The alternative to not doing it right is tragic. It may sound like we are throwing too much at you, but it is because we care about your precious little four old. She deserves to have the best care possible, and running her at 300-500 is just not acceptable. Im going to go out on a limb and tell you right now, since her dr has not gotten back to you, her range should be around 70 or 80 to 120-150. Below 70 is a low, above 150 is a high. She is feeling sick because her numbers are not in range. Thank you so much for listening to what everyone is saying, you are saving your daughter's life. She depends on you to learn as much as you can to keep her safe.
     
    Last edited: Aug 10, 2012
  11. caspi

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    I think the above is the best advice you will receive in this thread. We rarely deal with our endo team anymore - we go to our 3 month visits and that's about it. I refer to the books and also ask questions here if I am stumped on something. Knowledge is power. :cwds:
     
  12. Knittingfor4

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    There is a lock on the pantry, but not the fridge. I will put a baby lock on that and see if it keeps them out.

    I go to school at night, but I only have 3 more days. I was up at 7:30 this morning, it's not like I'm sleeping half the day. I think 7:30am is reasonable when I get out of school at 10pm, have homework, and now have to stay up to test. Please don't get the idea that I'm just leaving them all morning to fend for themselves!
     
  13. sooz

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    If you are able to get her to that magic 100 ideal, she may not feel great at first because she is used to being over 300. But what you have to realize is that when she is 500 and your husband gives her 3 units of insulin, and she drops 200 or 300 points, that is a good thing not a bad thing. Ideally she should get enough insulin to bring her to around 150 at the most.
     
  14. Melissata

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    You are getting plenty of help here, and I want to say that I am really glad to see that you are taking the advice you are getting seriously. As parents, this is SO alarming to hear and we know that it is not your fault. The problem with changing only the doctor is that you would be keeping the dietician. That person has also failed you- big time. The reason that your child is moody is because she doesn't feel right, she doesn't even know what it is to feel normal with blood sugars running that high all of the time. She is likely throwing ketones much of the time. Once you get a handle on this, she is going to feel so much better and you are not going to feel like a failure. I know that you are overwhelmed right now, but once you get those books and start reading them, this will all come together for you.
     
  15. MomofSweetOne

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    I know we're throwing lots and lots of information at you fast (do you feel like diagnosis all over again?!?), but here's another: There's an ad on here for a NovaMax meter that tests both blood and ketones. I'd highly recommend requesting one. They send them for free; the strips run about $2 each. The difference between ketone testing in urine and blood is huge. Real-time rather than lagging results. Not having to have the child pee on command, especially while sleepy. The kids prefer them. My daughter saw me packing an urine test vial as a backup for vacation last week and informed me she would go into DKA rather than go back to urine tests.:rolleyes:
     
  16. Traci

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    Op, is there just one endo group where you live or is the group you are with the only group covered by your insurance? If you have another choice, even if you have to drive three hours to get there, change endo groups. If there is no other choice from your insurance, call whoever provides your insurance and raise H?LL. These people are failing you. Miserably.
     
  17. Lisa P.

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    I have not followed this thread and stopped reading about halfway through -- boy, you're getting flooded with info!

    I wanted to give you and your daughter every sympathy. If you never see diabetes working at its "best" it's impossible to know it's not supposed to be as you've seen it, since diabetes is such an erratic thing. I totally get that you have been following what you thought was good professional advice and dealing the best you can and could not have known this was not the way it was for all diabetics. Obviously from your conversation you are open to learning and want to do what is best for your daughter, you will definitely get there now that you have overcome the obstacle of not knowing that her situation didn't have to be this way.

    A couple points on a kid with Type 1 who is 5 -- my daughter is small, and may be unusual, but watch out for these things.

    1. She peaks strongly with Lantus -- you will see lower numbers in the hours after the shot than the rest of the day. For this reason, we have in the past (no longer) given Lantus in the morning, not the night.

    2. Humalog lasts longer in her than in most kids -- up to 6 hours.

    3. She needs about 1/4 to 1/3 of her total daily dose of insulin (TDD) as basal (the Lantus). I tell you this because most endos will give ratios of half and half. So if my kid uses 14 units of insulin in all during the day (adding up every shot, including the Lantus shot), then an endo team might assume she should have 7 of it as Lantus, and the rest as Humalog or Novolog. But that's entirely not the case for her, she gets 3 to 4 units of Lantus and the rest as Humalog.

    That's all info for LATER, after you've had time to breathe and absorb all this. Start from scratch, start slow, revisit everything. Clearly no one has told you a lot of crucial information and they have misinformed you about a number of things. I could consider this just life if the results for your child had been neutral, but with the kind of results you have seen (sickness, hospitalizations, running perpetually high and having horrible lows) this team is what needed to take the wake up call. You would not have realized it, because you don't know what diabetes is "supposed" to be like, but with the first hospitalization the team should have pulled up short and reassessed everything it was doing with your family. I hate to think that they might give all their patients such poor information and so might just themselves think this kind of life is typical for diabetics. If things are as they seem, I'd definitely find a new team, I'd be inclined to even go with a good GP over an endo team that puts your kid at such risk.

    But, first, breathe!! You're getting there now!!
    :)
     
  18. Charliesmom

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    Okay, when you say they said all fruit is about 15 carbs makes me cringe. It makes me wonder how accurate your carb counting is. Please insist that you meet with a dietician. I use the Calorie King book and a kitchen scale to figure out the carbs in fruit. Actually I use it for everything except pasta.

    Diabetes is a family disease. Your older children are quite capable of letting you know when she eats or to wait to eat until she eats, etc. You need to get up when she does. She can't be eating without insulin.

    Please check ketones regularly when she is high. Don't wait until you are told to.

    IMO, her endo office has really failed you guys. Much of this stuff we learned before we were even out of the hospital. Then we also had meetings for additional training in the weeks following. I hope you request additional training from the endo office and read and reread the books that were suggest by others here.
     
  19. DsMom

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    You seem to be taking this all in in the spirit is given...empathy, support, and concern for you and your daughter. I hope you are okay and breathing!;):p The sheer volume of posts in this thread shows the concern and support for you (I was shocked to see the number of posts on this thread and that is what drew me to it)...it is a lot to take in, though. Good thing it's all written down and we're not all physically there yelling out these things to you!:rolleyes: You can go back and re-read all of this at your leisure to take it in when you are not feeling bombarded.

    There are big changes ahead...just keep reminding yourself that it is all for the best. Your daughter, and you, will feel so much better when this is under control. Perhaps her moodiness that you mentioned in another post is due to her high numbers...they are enough to make anyone feel bad. I hope you will see a much happier child after all this.

    You mention that you can change your doc but not the nurses and dietician. I was wondering why:confused:...if they are all part of the same practice, can't you just leave the practice? When I contacted my son's endo a lot...it was the nurses I mainly dealt with. If this is true for you...they are a big part of the problem...and if I were you I would do anything to get away from them. I will be interested to hear what they have to say about the advice you are getting here. (I think you mentioned you would be talking to them about it?) Don't be surprised or put off if they are defensive or dismissive of everyone's advice. After giving such bad advice to you, I have the feeling they won't be too receptive to ours.

    I hope you will continue to post here and in new threads to keep us posted. We are all pulling for you and hoping to see positive changes in your life!:)
     
  20. Brenda

    Brenda Junior Member

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    Just wanted to say that OP posted "I NEED A CGM..." at http://forums.childrenwithdiabetes.com/showthread.php?t=70862

    Her insurance co. has not been helpful.

    Furthermore, though most of us agree that 10-12 checks a day would help provide more data for her to understand what is going on, I don't know that she can do this because of her schedule (she mentioned school). It was not clear who was taking care of the children while she was at school. Maybe it's dad, maybe a sitter. Not clear if this person is willing to do the frequent checking. Just not enough info.
     

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