Hi guys. It’s been a while, but that’s only because all is well for me right now. Had a PDM fail on me at a football game (they do NOT like sweat apparently) and it did cause issues. My A1C shot from 6.5 to 8.5 in TWO WEEKS. But, i’m getting things back in hand now. (I lost my basal rates when the PDM died, and didn’t have a recent log. Weekly backups are now more common)
Anywho, onto the question. I have a friend in my Health class at school that doesn’t know how to use her insulin pump very well, and has no clue how to figure out her own basal rates and calculations. Her doctor doesn’t explain these things to her very much… they just kinda set it and then update it. Her most recent A1C was 11, and she said that her bg is over 600 a good bit. I’ve gotten pretty good at managing my basal rates, and i figure over the next week or so, i could make small adjustments to her basal settings, and tell her how to change them herself, and what to look for to see if a basal rate is wrong or not, and probably have her BG in much better ranges pretty soon. I’m just wondering if there’s any trouble that i could get into for helping her like this? Say her doctor doesn’t like it, would they be able to come back on me? I’m extremely confident that i won’t drive her BG down too low, and i’ve been talking to her about tips on handling it and keeping it in control for a few days now, so she has a much better idea of what to look for. She’s extremely sensitive to low BG, so i don’t think that she’d be at any risk of her sugar dropping too low during the day. One part of me says that i should help her for the sake of her health, but i’m not sure about the other side of it. Has anyone else around here helped a fellow diabetic on this personal of a level?
Thanks for all the help you guys have been in getting ME on the pump. I referred my friend to this site, and she should be signing up soon. (She may even see this) Hopefully you guys will treat her like you’ve treated me
I am not an attorney, but I don’t think they could come back on you. I say help her because she is probably not getting much help from her doctors. Basal rates are like the foundation to our control, so if they are not right, then nothing else will work.
I have gastroparesis and even though doctors knew I had that and gastroparesis causes havoc with BS, they pretty much blamed me for things not being right and did nothing to help me. I am guessing since your friend has high BS so much, her doctors are kind of pointing the finger at her and doing nothing to help. My feeling on people not in control is that they just need the help and don’t know how to fix the problem - I know that was the case for me and many other people. I wish I had found the DOC sooner, but am grateful that I found it at all. Your friend needs your help. Don’t hesitate to help her!
I agree that it’s reasonably safe for you but you never know with stuff like that. If you read all the fine print that comes with your pump (disclaimer: I didn’t!), it probably says something like “only change this with a doctor’s advice” or some disclaimery language. Which is totally absurd. If she’s that far out of control, I suspect that the best way to go might be to read “Think Like a Pancreas” and see if she can look at herself to figure out what’s wrong? It is a huge project just to keep myself running along and working with someone else could turn into a full time job. The other thing that I’d be concerned about is that you’d be getting “help!” txts 24-7, given my own soon-to-be teenager’s propensity to walk around txting people who are not “helping her”, instead of riding her bike to their house or whatever.
I’m inclined to think that getting her here may be 1) more helpful and 2) less of a long-term project for you. I think that it’s great that you’d even consider helping but here, there’s the advantage of checks and balances through the dialogue and back and forth on the site. Plus, given that there are members strewn around the globe, one could get answers to questions 24-7?
I look at insulin as a “hard” drug in that when you OD, it can kill you? If a teenager (I’m presuming she’d be a minor, although that can vary from state to state…) and turned up dead through some sort of pump misadventure (and having had pump misadventures, I have to presume it’s at least a possibility?), I would be reviewing the txt messages and, if I found a bunch from some other person, whether it was on a message board or from someone they knew, I would at least look into pursuing them? I agree this is a pretty minimal risk but, at the same time, depending on the state, it could be significant. There was a case in the news last year about an older lady in NYC who died, allegedly from injuries sustained when a 6 year old scootered int her? The estate sued the 6 year old.
AR mentioned “Think Like a Pancreas” by Gary Scheiner. A good way to go might be to work on changes while looking at the book together; another good book is “Pumping Insulin”. Your local library might very well have one of them. You’re not likely to get things wrong that way.
In the meantime, it sounds as if she can use a little help: Gary Scheiner has a website; maybe the two of you could start there, along with both of you looking at this site together. She needs to become very involved in helping herself so that she understands what she’s doing when she makes any changes. We all know that our Diabetes needs seem to change almost daily; she must understand what she needs to do and why.
Have she or her parents (I’m making the assumption she is a minor and on her parents’ insurance plan) considered the possibility of finding a new doctor? Maybe her current situation is just not a good fit. She is very lucky to have a friend like you who cares, but she needs to be working with a medical professional she can trust.
The D forums are full of help and advice and questions and what to do answers from folks we don’t even know! I don’t think you’ll get in trouble for helping her. I do know that the pump isn’t for everyone, and maybe your friend would do better without hers. Do you know how she managed before? You know that a bg of 600 is pretty dangerous, does she?? I would not personally tell anyone what to set on their own pump as far as calculations, however I would happily tell them how to do it, and share my own settings and how I came up with them. She will need to understand the reasoning to make the pump work, and she will be making these decisions whether by pump or needle for the rest of her life.
I hope your freind shows up, she’s lucky to have you helping her, Stephen.
You should not be changing her pump settings. You really don’t know how she might respond to changes in her insulin. She could still be honeymooning for example. Her doctor may not feel she is ready to make changes on her own yet (for whatever reason), so he hasn’t trained her yet. Also, female T1’s have other complexities you have never experienced (tmi).
Let me put it this way - I would be livid if another teen changed my daughter’s pump settings!
I think you should be fine as long as you are not presenting yourself as any kind of medical “authority”. We all help each other on here as well as with PWD we know in our regular life. I certainly think you should recommend Pumping Insulin to your friend as a reference book.
Having said, “go for it”, I do have a couple concerns. You said your friend is regularly hitting the 600s? That is dangerous territory, especially if she is consistently that high she is at a real risk for DKA. If her blood sugar does not come down from that level or if she experiences flu like systems I would suggest she get immediate medical attention. My second concern is more for you. It sounds like this person has gone for awhile with uncontrolled diabetes and I’m not sure why that is. If she is the kind of person who feels helpless if her doctors or another “authority” (which you could become to her) don’t tell her what to do, she may become dependent on you which isn’t good for either of you. I would recommend encouraging her to take steps to take control of her own D by doing things such as pressing her doctors or seeking a new doctor who will give her more guidance, getting and using Pumping Insulin, learning to acquire tools (with your help) and then practicing utilizing them on her own. You are good hearted to help, but dependence isn’t good for either of you.
I just re-read yours and others’ posts and realized she is a minor. That could be a stickier situation if her parents become irrate about another kid “telling her what to do”. I would tread a bit more carefully with this, sharing your own experience but avoiding any appearance of “telling her what to do” and put more emphasis on what I mentioned above - giving her info on where to go for information rather than just handing her “instructions”. I agree with Midwest Mommy - her parents could react poorly to a “non-professional” giving her active input.
Great Post, Zoe, The OP can point his friend in the direction of the DOC ( Diabetes Online Community), and urge her try to get a new medical team that is more supportive… In the meantime, she can help herself: The book 'Pumping Insulin should also be purchased, or checked out of the library. She should not be running 600’s regulary…How a,larming!! sounds like an impending unintended visittto DKA City if her control doe not imporove soon… No fun there. Has she checked for ketones?
Not sure about insurance. She gets plenty of strips and insulin though, so they have a pretty good insurance company.
I’ve referred her to my doctor, but the waiting list for poor Dr. Moll here is about 3 months long. He has over 26,000 patients, and he takes the time to sit down and TALK to ALL of them about their health, so needless to say, he falls behind schedule.
She forgot her meter/remote the last time i saw her, and the site she was using made it hard to get to the pump, so we decided to wait until Monday when we can actually see what we’re doing.
She’s been on a pump since she was diagnosed two years ago. What you explained is basically what i plan on doing. I have a funny feeling that her doctor has her on one 24 hour basal segment… it’s like she was put on the pump, and they set it as a beginner, and never changed anything.
This is the kind of stuff i’m worried about. I’m thinking i’ll suggest a few small changes, and then tell her how i got my sugar under control when i was put on my pump.
Thanks, this is why i asked the question on here… I’m thinking i’ll point her to my doctor, and to this site again, and tell her about the books that were mentioned here. She’s been through a few doctors (one died, and then she got moved to this one) so i’m sure the doctors are just as confused about what’s going on as she is. All i know is that i felt like CRAP with an A1C of 9 before i got my Omnipod… i can’t even IMAGINE what 11 feels like.
I’d help by offering her some general advice, and PLEASE refer her to the book PUMPING INSULIN, which gives some very straightforward advice about testing basal rates. But I would not touch her pump - leave that for her to do. Also, it sounds like she should maybe find a new endo, one who is more involved in her care.
diabetes is the kind of disease where we take care of ourselves more than our docs do. if she wants the help, help her. teach her. youve heard the saying. give a man a fish and he’ll eat for a day. teach a man to fish and he’ll eat for a lifetime. its something that you two have in common and you can educate her. make small adjustments. if her a1c is 11 you cant really do any damage now can you??
Re your other point, one could conceivably do some damage with a hypo? If someone doesn’t get low regularly, I think there’s perhaps a bit more danger as the symptoms may be unfamiliar enough that you could get clobbered pretty hard. 11 may be > some people’s goals but it may also take just a few adjustments to “clean up” too? When I was less tightly controlled (although I did ok A1C wise, #s were all over the place…) pretty much every single morning was a SNAFU and would sort of get my day off to a bad start. Once I cleaned that up, a lot of stuff sort of seemed to fall into place. If Stephen’s friend has the same thing, she could very quickly be zonked out of her gourd from hypos? I would still prefer to live closer to the edge but to drive up there suddenly isn’t without risks?
