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Discussion in 'Parents of Children with Type 1' started by nyholli, Oct 4, 2013.

  1. nyholli

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    Hi! I've been a member for 4 yrs. I do alot of reading here and only post when I have something to add. My dd just turned 8 and pumping insulin with the ping and her last A1C was 6.9. I'm just looking to see if anyone else had such problems with fluctuation in BG numbers. I just seems as if I'm constantly tweaking and adjusting when I see trends. Sometimes I'll wait it out for a week or more because it always changes. It's as if the wind blows 10knots instead of 5 her numbers flux. I get activity through the day, fatty foods vs. not, fiber vs. not but she is always changing. Sometimes it will be every two weeks. I tweak day basalt to fix a time period then nights breakdown. If I'm not fixing nights I fixing afternoons. It's just nuts. She is tested about 8+ times per day and I sleep in 2 to 3 hour increments. Her doctors feels that se is just one of those kids that is effected by environmental factors, schedule changes ... Blah blah. Just keep fighting the fight and she is always willing to web review numbers but what's the sense. She's gonna do what I do... Slowly tweak and adjust, look for trends! I guess I'm just wondering if alot of parents go through this? I'm not complaining but feel like I'm a terrible D mom.
     
  2. Sarah Maddie's Mom

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    Sounds pretty normal to me:cwds:

    I don't think it's ever as "simple" IRL as it is in the textbooks. Even if we could control for all the variables we can appreciate and measure there are still many that we can't even begin to factor in.

    Her A1c is great so she's obviously not out of "control". You sound sort of stressed though. My advice is to take a little break from the number crunching. Sometimes I need to take D one number, one check, one hour at a time. I still do what needs to be done (or more she does) but we do it with a little less self-importance. If that means she runs a little higher for a few days or that we feed the insulin a little more it's ok. :cwds:

    It's hard to articulate, but I have found that I just can't keep D front and center every single day - people say it's a marathon, not a sprint. It's trite, but it's also true.

    ETA: I just noticed that you're coming up on 4 years...I have a theory that after a certain number of years, for us it was 5, things just get harder. Like you think you've been out of honeymoon for ages because your TDD has reached that tipping point but then you see that there's more to it than that and that suddenly everything is harder and the margin for error is just tiny and insulin resistance strikes and so on and so on. Maybe you're just getting there a bit early
     
    Last edited: Oct 4, 2013
  3. Christopher

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    Good advice above. I would just add that maybe you should re-evaluate your expectations. Are you expecting her numbers to be the same every day? They won't be because there are so many variables that effect her bg. The human body is probably constantly "tweaking" in order to keep bg levels in range. But it does it automatically. Doing it manually is not a perfect science.

    I agree with Sarah, maybe step back a little bit and relax. Take some pressure off yourself (and possibly your child). You are not a terrible D mom.

    Good Luck.
     
  4. nyholli

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    Thanks for your responses. I really do try not to stress over it too much. It's just that the flux can be severe. One day her before lunch check is in range and the next day it's 300. We will go for 2-3am spikes over 300 than 7-10 days later its 180. Or we will be running normal during the day and then all the sudden start dropping to the 60s. It's just so frustrating. I know she will have plenty of variations but its is never ending. :(
     
  5. hawkeyegirl

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    It sounds pretty normal to me. It's hard and exhausting, I know.
     
  6. Shopgirl2091

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    Those are the kind of changes we have, and they don't seem to be slowing down anytime soon, my son will run high for a cold, or a growth spurt or no reason at all, then low consistently for no reason that I can figure either.

    I just figure it is the nature of the beast - it will always be changing so I just need to be prepared to adjust and re-adjust right along with it.

    It can be stressful, especially when you can't figure out the cause for a high or a low, but just breathe, and take a step back and take it a little at a time - just like Sarah said.

    At least we're all in this together :)
     
  7. Nancy in VA

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    We are 6 years in and that's how things are with us. There was another thread where people were talking about target A1Cs and what many of us were saying is that some people's biochemistry just makes diabetes a bit easier to manage. My daughter is NOT one of those and eating the same meal with the same # of carbs can do two different things on two different days. She can go to bed 4 hours after dinner and stay high all night, despite corrections, or we can be chasing lows all night. I agree with PP who says to take a step back and not worry about adjusting so often. I am a numbers person - very much so - and at the beginning, I was always analyzing numbers and trends. Now at 6 years in, I'm lucky that I download her meter the day before her endo appointment and I only make basal and I:C adjustments if there is something SEVERE that I notice without much analyzing. Mentally, that's all I able to handle at this point and her A1C is still in a good range, even though I don't do weekly or even monthly reviews.
     
  8. Mish

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    oh it sounds pretty much normal from where I sit too. :)

    I know, it just sort of sucks. We do like using the CGM because it seems we can stay on top of what's happening "right now", vs looking at past trends. It seems to help us more to do that. I still download and look at the big picture, but I'm finding better luck working in the moment.

    Just know that you're not alone. Not by a long shot. :)
     
  9. mocha

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    Unfortunately, as everyone else has said, this is normal diabetes behavior. It does even out a little bit when she's an adult (which was so nice when I got there), but there will always be those "How the <insert string of curse words> did that number happen?!" There will always be lost sleep and stress and wanting to run diabetes over with a tank...and then grind it up in a blender.

    I think what's helped me with the stress is to keep on with the mantra "it's just a number". A high or low reading isn't some moral failing on my part. It's just a number, a number that I can correct and move on. I think letting go of the "good" v. "bad" number system let me be less stressed over everything.

    I know for my mom, one of the things that's helped her be less stressed was getting a CGMS for my younger brother. my parents still wake up and check him in the middle of the night, but being able to get that extra bit of data with the numbers, and see what's happening in between, has made everyone less stressed.

    You are not alone in this. We're all there, right with you.
     
  10. Beach bum

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    This is pretty much normal normal for us. Everything has an impact on my daughters BG's. Weather, activities, hormones, foods. You name it, we see impacts from it. I wouldn't beat yourself up over it, and I'd take a step back and just breath. Don't micromanage to the point where it drives you crazy.

    Would you ever consider getting a CGM? We did last winter and it has dramatically changed our lives. Nighttime, it has been amazing. We aren't getting up every 3 hours anymore. We see things real time and can head problems off at the pass. I have to say, the CGM has really improved my quality of life.
     
  11. obtainedmist

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    When my daughter gets a totally out of the blue number, she attributes it to the D gods being restless! ;) Great A1C btw!
     
  12. nyholli

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    Thanks for sharing your experiences! Sometimes it just helps to throw it out there and get the feedback ;)

    CGM: The Endo and I have discussed it a few times and we have agreed that she is still too lean for it. My Dd is normal weight for her age but she is very muscular. So no leg sites, no belly sites, arms not enough tissue... All we have is the backside. The doc is concerned about tissue damage cause I have such limited real estate for pump sites. We use inset 6mm. The 30s were a nightmare for us. So we agreed we need at wait. As of right now and two years of pumping there is no scarring and want to keep it that way. So CGM is out. I don't foresee any thickening in the near future cause if cheer, gymnastics and twirling. Lol

    Can't thank you enough for your feedback. I just woke up feeling so defeated thinking it can't just be us but figured to throw it out there!
     
  13. Sarah Maddie's Mom

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    I think your endo may be a little behind the times. The Dexcom G4 has a tiny little sensor and it leaves almost nothing of a mark and certainly isn't scarring. I'd look into it. :cwds:
     
  14. Megnyc

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    I agree with this.

    The dex sensor wire is the width of a 2 human hairs. Since it is not infusing anything, it really can't cause scarring. Up until this summer I was as lean as can be and I have been CGMing for over 7 years. We were able to use the back of my arms even though there was no fat to pinch. And this was with the medtronic sensors which are much larger. The dex sensors I put on my stomach and I have very minimal fat there and I have no issues.

    Personally, I would just ask the endo for a prescription. Try it and I bet you will love it.
     
  15. Nancy in VA

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    I'm with the others. My daughter is about the same age as yours and I don't know what "weight percentile" your daughter is in, but mine is pretty lean and we wear one. She wears it exclusively on her upper arms - no butts, no bellys . We have been using the G4 for 9 months and love it. When I pull it out, you have to actually look close and sometimes put your finger behind the sensor to even see it - its much smaller than an insulin syringe and definitely a lot smaller than a pump cannula. And, the reality is that you can wear it for 2 weeks in the same location so really, the number and frequency of the sites you need isn't that much.
     
  16. Beach bum

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    I would talk to your endo about it. The CGM has come a long way in just the last few years.
    Because the Dexcom sensor goes in deeper than an infusion set, there is no evidence of scarring from what I've been told. We use arms and hips almost exclusively and have yet to have a problem. If the CGM is of any interest to you for part of your diabetes management, I'd go onto the Dexcom site and read about it. Then, bring it up to your endo at the next meeting. Sometimes doctors/nurses tend to tell people things won't work because they themselves aren't really familiar with the technology.
     
  17. Lizzie's Mom

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    First of all, you're doing a great job ;).

    As the others, we experience much of what you do. I think it's the nature of trying to be a pancreas for a growing child - the growing body's needs are always changing, even day to day, and we're always playing catch-up.

    As the others, I agree that having a CGMS makes it so much easier. The software is very helpful for spotting trends, assuming there are any, ha, and if there aren't trends, you will see that you aren't losing your mind :rolleyes:.

    A good number with a straight arrow allows for peaceful rest for you at night, and trends showing at all times help you to head off unexpected/unexplained highs or lows. If nothing else, it makes you feel like you're more in control of Diabetes than it is of you!

    The Dexcom G4 is great; we really like it. We have more issues with tape, honestly, than with the inserted sensor itself. And the tape issues are when we use it more than seven days - we just need to add more to keep it on. Others have spoken to the lean spots issue; DD is on the chunky side, so not an issue for us. Lots of 'real estate' here!

    Again, mom, you're doing a fabulous job!
     
  18. nyholli

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    Thanks for info on the CGM. She did bring up that the new one is tiny but I can't recall the entire conversation, I'll have to bring it up again on our next visit and explore it further. She's with a major research group in NYC and I truly trust everything she says because she has been so valuable to helping us keep that A1c under 7, but it sounds like many of you feel like the CGM may be really good for my DD. May I ask those that use only the backside for both how your child adjusted to having two objects attached? I realize its just a sensor and the unit is not connected but it is another piece of something attached to them regardless how small. My Madi has become sensitive about having D this past year. I always allow her to vent and agree that it "sucks" but in a lot more words tell her to make peace with it. By no means does it effect her socially or she is not limited in any way regarding foods or activity (I don't deny, I practice moderation and healthy choices at home with both kids, but she has her fair share if garbage food. Lol). I'm not sure why she is feeling this way but she is.

    It would be awesome to hear your real life experiences, the good and the bad, about the CGM (might be another thread though). Thanks again.

    PS: happy to report that today was an awesome BG day stayed above 70 and not above 160 so far!
     
  19. shannong

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    Sounds just like my reality. My son was diagnosed 14 months ago, but this has been our reality pretty much from day one. I guess we didn't get any honeymoon years. In fact we are going through a pretty rough patch right now too. My son literally goes from running low all night long, to the next night running high and I can't figure out any pattern. I'm losing so much sleep. But what else is knew? I can't wait for the Dexcom to come to Canada. I believe it is my only hope of possibly sleeping again.

    My son is also very lean and muscular with very little fat and similarly the only actual fat areas would probably be his bum. I still rotate sites though - we use stomach, upper bum, and sometimes thighs (although I seem to get more problems with thighs). I will probably use arms once he starts the CGM.

    After reading many diabetes forums, I believe that children really do differ in terms of how much their bg's fluctuate. It's so much work. It's so tiring. I have learned to just appreciate the hours when I actually see some stable numbers and learn to be happy with the things that work out when they do. I can't say I have gotten to the point where I intentionally back off from diabetes, but I do let other things slide - like housework, etc. I try to give myself permission to do this. Or to remind myself that I can take naps and take care of myself too.
     
  20. hawkeyegirl

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    I find that when it comes to the day to day stuff (like how much fat is needed for a kid to wear a CGM), endos really know a lot less than parents who are actually dealing with this crap. There are a lot of lean kids (and more than one baby) on this board who wear CGMs, so I'm pretty confident that it could work for your daughter. I am still constantly amazed that after my son wears a sensor for 2 weeks that it is almost impossible for me to see the mark even immediately after we remove it. His pump site marks are much, much, much more noticable. The Dex mark is literally almost microscopic.

    My son has worn a pump and sensor since he was 4. For me (and others will disagree), the CGM is non-negotiable. I put it in the same category as seat belts and bike helmets. THAT is how critical I think the CGM is to his health and safety. (I don't put the pump in that same category, although he is terrified of shots, so there's no fear that he'll give that up, lol.) I am lucky that it is all he knows, so the second site is no different to him than putting a pair of underwear on.

    I'd tell your endo you want one. It's life-changing.
     

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