So I’ve been dragging my feet in the CGM department - not sure why other than I guess to me it just seems like one more thing to take care of! But we clearly need it, for lots of reasons, but here’s a good one.
My daughter went to stay over-night with my parents last night and this doesn’t happen very often. And even though my mom is wonderful and loving, this whole diabetes thing seems to elude her. So in trying to keep Sarah’s numbers good last night they ended up giving her way too much insulin and when I called my mom in the evening she said that Sarah didn’t check her blood before bed, but that they were going to check it before they went to bed. So when they did check it at 10:50 pm it was 2.4 (43.2)!!! Thankfully we were on the phone at this point (they couldn’t remember how to use her lancet device) and I didn’t freak out and they were very casual about it, so I had them give her two juice boxes (she’ll drink them in her sleep). Then when they checked her again 12 min later she hadn’t gone up at all, so this time I had them get her up and out of bed so she could see how much insulin on board she had and suspend her pump. They gave her 3 tblsp maple syrup (yuck, I know, but quick!) and it was ages later that she was finally 5.6. (100.8) I had asked them not to put her to bed until she was at least 7 (126) for peace of mind, but my parents were tired and they felt she was fine and so they put her back to bed. Then I asked them if they would get up and check her in the night just to make sure she was OK, and they said they would, but today told me they didn’t bother… they thought she was just fine so they went to bed and slept soundly all night!
Sigh. And you know what, she was just fine and her sugars were great in the morning, but I’m still upset by this whole thing. Can I really trust my parents to take care of her? Or am I being way too over-protective and sensitive? Or should I just shut-up and get a CGM? Or do they just need a ton more education? What would you guys do?
I wouldn’t leave my daughter with anyone who is so nonchalant about Type 1. AND I’d get a CGM, like yesterday. If you aren’t checking your child’s BG every five minutes overnight, how do you know she isn’t going low? If I had to do without one (either my daughter’s pump or her CGM), that would be a no-brainer for me: Bye-bye pump…
I dont think youre being too over-protective. I would not let her stay at her grandparents house alone until she were fully able to do everything herself. or a cgm. or you stay overnight with her when she stays there.
your parents need way more education. they dont understand the danger they put your child in. i got T1 as an adult and no one has ever taken care of it but me. i cannot imagine handing over control to another person, my best friend/my mom/my partner. they would not know what to do even if i gave them minute by minute instructions and i would be on edge constantly. you parents of t1s have the unenviable job of sending your kids out into the world to play at being completely normal, of making them feel like everyone else while you worry and check and double-check everything, of handing over control to teachers, grandparents, camp counselors and a host of other people while simultaneously showing your kids how to take the reigns little by little. You are right to worry, as your parents are clearly unaware of how serious hypoglycemia can be. i am glad your daughter is ok and that nothing more serious happened.
i can imagine your parents might be a bit upset/insulted if you told them she couldnt stay over there anymore because they dont know how to take care of her health, but it is what it is. it is hard to tell your parents they are not doing a good job with their grandchild-they raised you and you came out fine! if a cgm is not an option, it could be a 3 generation sleepover until they are better educated/you get a cgm/your daughter can do more for herself.
if i were you and could get approved for a cgm, i would. if she is pretty stable bg wise, maybe just use ot for the out-of-the-ordinary days and nights like sleepovers and stuff.
I’d say the key to the problem is “couldn’t remember how to use her lancet device” as if that wasn’t clear, I would wonder how they got to where they got. I’d say that if they were more confident at that, they’d have been more on top of it, if that makes sense.
Hi Leela! Hugs and hugs. Family is such a lovely yet delicate bubble when it comes to the betes!
I’m not a momma of a T1 but just a middle aged lady who loves her Dexcom! CGM all the way! Of all the gizmos and gadgetry, it’s the one thing I would not give up. I believe it should be standard issue at diagnosis, for anyone with any type. Like BDU’s in the military or curriculum guide for a teacher!
It is, in my mind my visible pancreas… I feel like I actually know what the flip flop is going on with digits ( well… As much as we can understand what’s going on with betes… Um…did I breath? Eat a pickle? Watch the wrong to show? Why is the number this???).
With the new Dexcom, it does not necessarily even mean another gadget. As your phone can act as the receiver.
Valuable for grams, gramps and babysitters yes! And for you and your sweet girl too! For me it’s not an extra thing, it’s my main and most important thing! Ok, maybe insulin is the most important…
You rock!
Honestly, if they’re confused about how to use a lancing device, a CGM wouldn’t help them much. If you’re interested in a CGM for your own peace of mind, that’s a personal decision & should be based on your needs (& your child’s). CGM is a wonderful tool but it’s a long way from perfect. It also comes with its own issues, not the least of which is the wearer being burdened with an extra site. Depending on the age of your child, that could be a big issue.
From your post, they overdosed insulin, couldn’t figure out how to use the lancing device, & obviously don’t understand the dangers of hypos. To me, that’s clearly a lack of education &/or communication. Diabetes interferes with ‘normal’ life enough, particularly for kids. There’s no way I would allow it to interfere with family relationships & especially one this important.
JDRF & ADA chapters, at least in my area, offer basic classes/workshops for caregivers. Other options are your endo clinic/hospital & workshops offered through diabetes camps for kids. At the very least a clear discussion of the seriousness of care & your expectations of the grandparents is called for, & maybe some written guidelines for them to refer to when your child visits.
$.02 from a mom of a child with T1 & grandmother of 5.
A CGM would help but not totally fix the overnight situation with your daughter and grandparents. CGMs can malfunction. I’ve been through two consecutive sensors that have been much less than ideal. One of them insisted on showing false lows and didn’t make appropriate adjustments when I calibrated it. (I know about the calibration standards; I’ve been using a CGM for almost seven years.)
Using a CGM well requires a lot of background knowledge about diabetes. You have to know when to doubt the CGM and do the fingerstick! I don’t know how to handle the social side of this with your parents. That is a delicate issue. You don’t want to insult them and have them think that they don’t care about their grandchild’s safety. It’s almost like alternate caregiver’s need to go through some formal training like they have for new babysitters. Diabetes plays for keeps, you do have to know what you’re doing.
I think the suggestion for you accompanying your daughter when she sleeps over is the best way to bridge this time until your daughter is competent enough to handle her diabetes herself.
Perhaps you could get a CGM and remotely manage your daughter’s BGs by texting to your daughter directly any dosing or treating instructions. That may provide the best for everyone. That way you maintain the expert judgment and safety for your daughter while your parents can just be grandparents without this extra layer of complexity and responsibility. You didn’t say how old your daughter is but I think many kids could responsibly handle the remote monitoring, texting, and following remote instructions from their parent when they’re 8 or 10 years old, especially if it means they get their own cell-phone.
thanks everyone for all your insight helps because I’m realizing that my parents aren’t educated enough. Unfortunately I’m not sure how to teach them more because they think they know enough - does that make sense? In fact, my mom seemed more upset that she had miscalculated Sarah’s carbs and had her bolus too much ( because she tried so hard to get it right) than she was concerned that Sarah went too low. My mom really wants to do a good job and prove to me that she can manage Sarah’s diabetes - so I think that she figured if ‘highs’ are bad, let’s just load her full of insulin, not realizing that there are dangers in going too low. Sigh… I feel like I’ve made a mess of things here. I should have taught them more, but I guess like the lancet, I hoped that they would remember what we’ve gone over before, but they only seem to remember bits and pieces. Sarah doesn’t stay with them that often because they are intimidated by her diabetes, so I agree that there won’t be any more sleep-overs without me. And that’s OK.
I think that it’s important to teach them that highs and lows are normal for someone (especially a kid) with Type 1. It doesn’t necessarily mean they have done anything wrong. But, what they do need to know is that highs and lows (and therefore monitoring) shouldn’t be ignored, since there can be serious consequences to both.
Depending on how old your daughter is, maybe one way to broach this subject would be for the two of you to put together a “presentation” for her grandparents that you could both then “perform” for them. It might make it more memorable for your parents, and empower your daughter with her diabetes (always a good thing!), and be a way of getting in some education without making things so awkward. Also, if your daughter “teaches” them things, then she could help by showing them how to do basic (concrete) things that they might forget, such as using the lancing device.
A CGM would still be a good idea, especially one with remote monitoring capabilities so that you could get alerts on your phone and keep an eye on things. But I agree with other commenters, a CGM isn’t going to fix things if the basics aren’t already firmly in place.
I think you should keep in mind how confusing this is all was for you at first. It’s so much to take in & for someone who doesn’t ‘practice’ each day, it’s much harder to remember everything.
If your child is too young to help them, it’s probably better if you do the sleepovers with her. Hopefully it will be often enough they can learn more by observing.
yes, really good to keep in mind that they arent doing this every day and about how horribly overwhelming all of that information can be at the beginning!
This touches on the hardest thing for “outsiders” to understand, as well as the subjective or emotional side of the “trying to educate my parents” side of things. It’s very hard for them to grasp that, unlike virtually every other medication situation they’ve dealt with, with T1 the symptom you’re trying to control–high BG–is far less dangerous in the short term than the treatment you’re using to control it. It’s going to be hard for a conscientious grandma not to want to have a “good number” to show when you come to pick up your daughter, but somehow you have to communicate that actually you’d rather see a “bad” number, within reason, versus the real danger of a severe hypo that could mean a trip to the ER in the middle of the night, or worse.
The fact that popular culture treatments of T1 always get this inverted doesn’t help, reinforcing the idea that if there’s a problem, it’s being caused by the disease and therefore what’s needed is the treatment–the infamous “that diabetic is gonna need a shot!” meme familiar from TV and films—when the reality is far more likely the opposite. There’s also a general tendency, I think, to discount warning labels on medications to some degree. I remember when I was first DX’d (I was 28), I kinda figured it was like those “May cause drowsiness” things you get with cold medicines, which almost never make me feel drowsy (more’s the pity) so how big a deal could it be, really. And then I had my first NPH-induced hypo. “Oh, that’s what they mean…” Until you’ve experienced it, it can be really hard to convey how scary and debilitating it can be.
Get the GCM, like, day before yesterday. I’m a grown man and I have trouble managing things without my Dexcom. The G5 has already saved me on multiple occasions and I’ve had it less than 6 months. I live alone, and I don’t have any in state family, but the dexcom allows my friends and family to be notified automatically if my sugar drops to 55. It’s a lifesaver for me. The most helpful thing about the dexcom is it’s ability to tell you which way the blood sugar is trending, and by how much, that is, how fast. Without a trend, all you have is a number.
my omnipod to much! my cgm not so much.
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For me it’s not an extra thing, it’s my main and most important thing! Ok, maybe insulin is the most important…