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Things that have helped, but...

Discussion in 'Parents of Teens' started by mariaweber, Nov 3, 2010.

  1. mariaweber

    mariaweber Approved members

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    About six weeks ago I posted about my 14 year old daughter's horrible A1C (8.6) and got an out-pouring of comments. All were very appreciated. Over the past six weeks we've made a few adjustments, but we are still having difficulties. Here's what we've done:

    1. I know it sounds weird, but we've taken break from CGM. We found that she was overreacting to the information (going down or up with two arrows). She would end up yoyo'ing all day as a result. We will go back to it when she is more stable.

    2. Pre-bolusing well in advance of meals. Sofie eats, for the most part, a carefully constructed, low glycemic index diet. For example, sprouted grain toast (10 g), almond butter, and 4 oz of milk for breakfast. She has to bolus for this at least 1/2 before she eats or she spikes very high. If she gets the bolus in on time -- things are good.

    3. Not removing the pump for workouts. Temping up for some workouts and down for others (sometimes it's hard to predict -- it's not as straightforward as aerobic and anaerobic).

    4. Lots and lots and lots of insulin. And I mean TONS of insulin.

    I just want to say that she is a bright and committed person who is very concerned about keeping herself healthy. She is also extremely sensitive to hormone surges, insulin and carbs. I realize that all teens are, but my endo seems to think that she is particularly sensitive and always has been. Even at diabetes camp she would come home every summer with letters from the doctors saying how they had such a difficult time controlling her BGs.

    For example, this morning she woke up with a BG of 6.5 (sorry folks, I'm Canadian). She had a day off school so she had slept in -- it never makes any difference to her BG -- as I said -- nights are nailed. Instead of bolusing 1/2 before she ate, she bolused 10 minutes before and instead of the sprouted grain toast she had an apple. The result? A spike to 17 an hour later -- and this is on a 1:4 carb ratio and weighing the apple and using bolus wizard.

    This is what we're up against. I regard myself as a pretty intelligent person, university educated and a professional. My daughter is gifted academically and maintains an average in the 90s. We get it -- what we don't get is the unpredictability of it.

    I appreciate all of your stories of success, but sometimes they can be a little bit condescending.

    We're really struggling here. We need help and thanks to those who have provided it.
     
  2. emm142

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    Could you tell us how much basal she is getting compared to bolus? 1:4 seems like a HUGE ratio, so I'm wondering if it's at all possible that she's overbolusing for meals and rebounding? I know some younger teenagers need a ton of insulin, but a rise of 10mmol/l from an apple seems pretty huge to me (like, about as big a rise as you would expect from an unbolused apple).
     
  3. StillMamamia

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    I hope you don't mind me posting here, even though I don't have a teen, but I just wanted to say I am sorry you're feeling so frustrated. It is very difficult doing the job of a pancreas.:( Add to that adolescent hormonal changes and I cannot imagine how things are!

    I think it's a good thing you are taking a CGMS break, for psychological comfort's sake, though it is a very helpful tool in catching patterns.

    If I may suggest, how about posting your daily BGs here and get some feedback on that? Is your endo also helping?

    And I'm sorry the stories of success bother you. I'm sure it is not people's intent to sound condescending at all. It's just a way to share when we manage to score one against the D beast.:cwds: That's why you don't see that many personal success stories from me...I'm trudging along with much difficulty.:eek:
     
  4. mariaweber

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    Thanks for the feedback.

    Because we have had to make so many adjustments to her insulin levels, often we do get the basals and boluses out of sync.

    She's on a 1.5 unit per hour basal for most of the morning and this tapers as she goes through to the afternoon and evening. Similarly, her carb ratios go down to 1:4.5 at lunch and 1:5 at dinner. We try to maintain about a 50:50 bolus to basal ratio, but as I said, with the constant adjustments, sometimes it gets a bit out of wack.

    And then sometimes (about the third day of her period) it's like she needs no insulin at all and is often on a temp of about .5 units per hour and still will go low...it's very weird.

    It's so hard sometimes because honestly I get the feeling that people just don't believe me when I tell them what we're doing, and they see the results.

    Don't get me wrong things are better and what's made them better is sitting down together every night and going over her numbers for the day. Downloading everything to CareLink once a week and having someone (no our Endo because she's too busy) look at her trends.

    I think that we're on the right track. It's the constant communication that is key to success. She wants her BG to be good just as much (or probably even more) than I do. She is desperate for it. Sometimes it consumes her.

    What can I say, 14 has been a very rough year for her BG with regards to diabetes management. High school as been a big change, but she has always had a lot of independence.

    I am happy to hear about your successes, it's when we get questioned about how we could be so inept despite all our our technology, that I become really depressed.
     
  5. Flutterby

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    I don't know where that is coming from (I don't recall the posts or know what was said).. We are all in the same boat, we all have difficulties.. Teenage years a difficult, those that have gone through it, are going through it and those that are looking at it from a distance.. we all know they are difficult and unfortunately hard to manage.

    The written word is much different than the spoken word, that always needs to be taken into consideration when responding to others on the forum.
     
  6. Brenda

    Brenda Junior Member

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    For reasons unbeknownst to me, many people seem to have their highest BGs after breakfast. If pre-bolusing isn't helping, what about very low carb/no carb breakfasts, at least to see if the morning basals are correct? And/or an extended bolus? It sounds like your daughter's senstivity to insulin is "unusual" for lack of a better description, and quite a challenge.

    Have you considered an untethered approach for the daytime? She would need an injection of Levemir (supposed to last 12 hours) in the morning, then either inject or bolus through her pump for meals/snacks. I don't recall reading that she was involved in exercise for which she was disconnecting her pump (always a personal choice--to disconnect or not). A background of Levemir should be helpful when disconnecting.

    It sounds like you both are working hard to reduce the highs. What works for one, may not work for the other--such is the challenge of diabetes. Hope the current challenges you are facing are just temporary.
     
  7. hawkeyegirl

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    I'm sorry you got some assholish comments on your last thread. I can see why they would make you feel a bit defensive about what you're doing, but I don't think they in any way represent the majority of posters on here. It sounds like you're doing all the right things, IMO.
     
  8. Bigbluefrog

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    Seriously you just described our typical day! IS she growing?

    I been wondering too what is going on with her bg, my dd that is.

    I am about to eliminate carbs and see what happens. just for a meal or two.

    Have you tried that? chicken and veggies, fish and salad, low fat and low carbs just to see if basals are on target? I know we have not done that but that is my next step to finding some control
     
  9. mariaweber

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    For sure, I think that limiting carbs is a great idea, however with a growing and very active kid it can be difficult. Sofie runs competitively -- it's not just for fun, but she's chosen to go to a high school with an elite athlete program, so it's part of her school day -- built right in. Eliminating carbs would be a huge problem.

    What we're trying to do is find very low glycemic alternatives -- seed crackers, sprouted grain breads, brown rice, quinoea, etc. It's frustrating when an apple can mess you up :p Honestly, we feel really stupid sometimes.

    But, thanks for everyone's support -- including the sometimes not so nice stuff. I know that everyone's in the same boat.

    Wilf, if you read this, honestly I wish that I could ship my daughter to your house for a couple of days and you could straighten her out. (BG-wise, that is). You're doing something that I'm obviously missing, even though I spend a good part of every day thinking about Sofie's D.

    Keep the comments coming. I'll try not to be too sensitive.

    p.s. Attached is a photo of Sofie battling for position in the Toronto City Track and Field Championships for the 800 metre. She ended up winning the race and breaking the City record by 3 seconds.
     
  10. emm142

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    I'm just stunned by how much bolus insulin she needs, for a slim, active teenager. I guess I missed the prime part of puberty with my dx coming at 14, since I went through the main part of puberty pretty early.

    When she was on the CGMS, what did the meal spikes look like? When did they start, how long did they last, did they go up really fast and then down really fast, or did they go up and plateau.. etc.?
     
  11. Flutterby

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    We delt with huge, horrible meal spikes, especially after breakfast (and she's no where near puberty, I HOPE! ;)). We prebolused, cut out carbs, upped her basal (and backed off later in the day), we tried EVERYTHING. Her endo did NOT want us taking carbs out (we're always dealing with celiac so she has a limited food choice at breakfast, foods that spike much quicker than most nongluten free foods.) she said simply, deal with the spike.. that wasn't good enough for me, it drove me insane, really! Then we went to apidra, and bam, meal spike is so much smaller! I Love apidra, its faster acting, and doesn't hang around as long. It doesn't work like that for everyone, but for us, it was the answer that we were looking for (for now, I'm sure things will change ;)).
     
  12. wilf

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    Certainly if anyone was guilty of condescending sounding comments in your last thread it was me. I've re-read my comments from back then, and I sincerely apologize for the way they come across. If it's any comfort they weren't intended to sound the way they do in hindsight, but just to give you a prod into making changes.

    You've made big changes! :) First question would be how are numbers now compared to 6 weeks ago? Any noticeable difference? Any time of day that's better or worse?

    It would also be helpful if you could post:
    - your DD's weight;
    - TDD;
    - basals and ISF;
    - ideally a day's worth of carb and BG numbers, with times of exercise noted.
     
  13. Brenda

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    The Teen Years

    Oh, now that I know she's a competitive runner, I agree that further reduction in carbs is not part of the solution. She needs carbs for energy to run.

    Well, I still think she might benefit from a morning shot of Levemir, but I am not an expert with its use along with a pump. I'd ask your diabetes team about this. They may think this is crazy; maybe it is. I think the other viable option would be increasing the daytime basals, but I sense you might be a bit reluctant to do this.
     
  14. StillMamamia

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    I know this is a long shot, but thinking back about the apple issue. That is weird. She should not be spiking like that, IMO. Could it be (and it's a LONG shot) that she's actually rebounding? Perhaps Brenda's idea of upping the daytime basals (perhaps at the most "spiky" times) would work.

    I'm not sure how the body works and if it's possible to get stuck in a vicious cycle of rebounding:confused:

    Another thing you could try is work on a time-frame at a time, otherwise you become even more frustrated trying to get everything to be in sync at once.
     
  15. wilf

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    Good call Paula. Rebounds and insulin resistance are a real possibility here.
     
  16. chbarnes

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    I know i have been guilty of overcorrecting based on the CGM and got the peaks and valleys patterns you describe. Even when you reintroduce CGM you may want to try not giving insulin unless it has been your DIA since the last correction. For example, our DIA with Apidra is 3 to 3.5 hours, so unless things are completely wrong, we don't give any more insulin for 3 to 3.5 hours.

    Apples have a relatively low glycemic index, but all of us have demon foods. I would just start experimenting with insulin dose and bolus profile. I tell Chris we don't just want to avoid it, we want to learn how to deal with it.

    My son is also 14 and he is really growing now. I have to change his basals every 3 to 4 days. He has been up to 1.75u/h but recently - and suddenly dropped down to 1.6. We have also seen spells were he required hardly any insulin for several hours.

    I think just sitting down each day and examining the numbers, as you are doing, is the best way to keep ahead of things. When you are comfortable adding the CGM back in, it will be useful in adjusting basals.
     
  17. mariaweber

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    Yes, the sitting down every day piece is crucial. We just have to carve out the time to do it.

    This is mostly for Wilf -- Here are Sofie's numbers. All-in-all, it was a terrible BG day. Spikes after each meal. Maybe you can see what's going on.

    She currently weighs about 52 kilos (about 115 llbs)

    Basals (I'm starting them at 8:00 am, because that's when she gets up)

    8:00 am to 10:00 am (1.45)
    10:00 am to 4:00 pm (1.60)
    4:00 pm to 10:00 pm (1.35)
    10:00 pm to 12:00 am (1.25)
    12:00 am to 2:30 am (1.15)
    2:30 am to 5:30 am (1.20)
    5:30 am to 8:00 am ( 1.45)

    For breakfast and lunch she is on a 1:4.5 ratio. For dinner she's on a 1:5. She's not a huge snacker (the main reason why we moved to the pump 5 years ago).

    Sensitivity factor is 1:3.5

    She is getting about 32 units of basal per day and her daily averages are around 60 units per day. It's pretty close to 50/50 (I was actually surprised by this).

    Here are her numbers for today. Today was a pretty bad day, but not the worst. She had the day off school today (school thing) and had a slight cold, but feels pretty good otherwise. No exercise today. I hope you don't mind mmol.

    From evening of Nov. 2
    9:10 pm -- 9.6
    11:16 pm -- 4.3 (had 4 oz of juice, but didn't touch basals)
    2:32 am -- 7.3
    7:06 am -- 7.6
    9:15 am -- 6.5 (This is when she got up and had breakfast -- the cursed apple!)
    10:39 am -- 17.9 (she gave herself 3 units by injection because she figured that her canula was old -- three days, and put herself on a 4 unit/hr temp basal for one hour)
    12:09 pm -- 13.0 (coming down nicely)
    1:24 pm -- 9.8 (lunch -- omlette with one slice of sprouted grain bread -- 10 g carb -- bolused with wizard)
    3:14 -- 13.7 (correction 2 units and temp basal 3.5 units/hr for one hour)
    4:46 -- 5.4
    6:30 -- 6.5 (dinner: homemade enchiladas made with brown rice, beans, veggies, cheese -- we eyeballed it and figured about 50 g -- bolused with wizard)
    8:00 pm -- 16.5 (AKKK! She was at her theatre group rehearsal. She corrected and did a temp basal of 4 units per hour for two hours)
    10:00 pm -- 9.6 (so, coming down nicely in time for bed)

    Nights have been very good lately. I think that we have to have a better A1C this time if every day, for at least 10 hours, she is in range. The rest of the time is all over the map.

    What's your advice?
     
    Last edited: Nov 3, 2010
  18. grantsmom

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    My son is 14 too..and I soooo get what you are saying. Our A1C was just 8.5. We are faxing numbers weekly. As the Endo said yesterday...hormones can make things a lot harder.
     
  19. wilf

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    Thanks so much for posting - very helpful! :)

    There are 2 perspectives from which one could look at these numbers:


    Perspective 1
    ***********
    These are actually not bad numbers at all - sure the spikes are annoying, but you get her back into range pretty quickly.. :)

    If every day goes like this you will not have an A1C in the 8s, it will be in the 7s.

    She IS needing lots of insulin - DD at 12/13 did too. At DD's peak she was at 70+ units a day, and could absorb insulin like water.


    Perspective 2
    ***********
    The possibility of rebounds from lows should be considered. There are 2 times where she seems vulnerable:

    i) At breakfast with the "dreaded apple". It is not clear how big a bolus she got for breakfast, or how many carbs it was. But the 17.9 80 minutes later could be a spike, OR it could be a rebound after a low..

    ii) At 4:46, with about 1 of 2 units bolused at 3:14 still on board and a 300% basal rate for an hour (which gave more than 2 extra units) just completed. Given her ISF of 1:3.5 mmol and the 3+ units she had on board, I see a LOW as a real possibility between then and supper. If she went low then the 16.5 could be a rebound.

    ***** ***** ***** ***** ***** ***** ***** ***** *****
    A little more information is needed to round out the picture. The amount of insulin in the breakfast bolus, and any exercise she got in this 24-hour period.

    What we want to make sure of is that there's not lows/rebounds/insulin resistance occurring.

    I agree that one of the keys to getting A1Cs down is in range night numbers..
     
    Last edited: Nov 4, 2010
  20. fredntan2

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    Just wanted to say Hi,
    Our dd's are same age/dx few days apart.

    We're going to endo today. Its not going to be pretty. I'm really impressed that you can get your dd to prebolus. I personally don't think 8.6 is that bad for these horrible teenage years. I think we tend to beat ourselves up too much.

    I better focus here and print out my data
     

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