Teen Topic #4: How do you feel about remote cgm monitoring devices such as Nightscout/the Cloud/Share or other similar products that allow your parents to monitor your BG no matter where you are? (For example, on their phone) Do you want them to be able to monitor your BG at all times? What, in your opinion, would be the pros and cons of your parents having this information available to them 24/7?

Nicole (age 14)
I don’t like Nightscout for myself. I can get why maybe it’s good for some newer diagnoses and younger diabetics, but at this stage in my diabetes, it is unnecessary. I think it takes away from learning to take care of yourself and general independence as you grow up. How can you expect to be able to manage yourself in college and the real world as an adult if you never got the chance to learn while you had your parents to support you? You don’t just give a kid a license, but you do teach them how to drive and make their own mistakes. I think it’s nice for kids who maybe can’t feel their highs/lows as well, but you should still use it as a learning tool (if at all) not as some end all law. 

Josh (age 17)
I feel like the inventor of Nightscout and similar products definitely was an over concerned mother/father.

I would not want my mom monitoring my blood sugar from states away as it deprives us, as the diabetics, the opportunity to learn responsibility, learn how to manage this deadly disease on our own. If we are under our parents’ wings forever, we will never be able to experience a somewhat ‘Normal life’.

I understand our parents worries, and why they care so much/want to be so active in our diabetes care, but at some point there needs to be a time that you guys let us start to become our own INDEPENDENT person..

Claire (age 16)
I find that to be a little bit too controlling.  Parents should trust their teens enough to be able to monitor their BG on their own.  I can see it being useful for newly diagnosed, or for very young kids.  But for a teen, we are on the verge of going off to college, or going to live on our own, and we should be learning to care for ourselves.

Mercedes (age 15)
I think it’s too much to have your parents have your numbers 24/7. I could see it if your child has been having troubles, like having lots of lows that can be understood. I don’t like the idea of them knowing all the time, it takes away trust and privacy.  Trust is a big thing to a diabetic. 

Skylyn (age 15)
I think products like the Nightscout are good if you have young children who need a lot help taking care of their diabetes and are new to a life with diabetes.  For me, I wouldn’t want my parents to see my numbers 24/7 because it would be an invasion of my privacy and my parents should trust me to take care of myself at this age. 

Jessica (age 19)
Personally, my parents do not use any of these programs to monitor my blood sugar. I think that when there is an established trust there is no need for continuous monitoring. If parents educate their children about how to take care of diabetes and the serious consequences that can arise, then there is no need for such close monitoring. In fact, I feel as though such a close eye makes kids more likely to rebel and not check or bolus properly. I think the best way to handle parental monitoring is to download numbers and blouses (or keep a log book) and once a week, or every other week, check them and make adjustments accordingly. My parents trust me enough to know that I know what is right and what is not, and that when they ask for me to download I will. This way we can have a discussion together about what we believe the proper adjustments are for the numbers being seen. It also helps ensure that I am on top of my stuff because they can see and notice when I am not checking or forgetting to bolus and give a gentle reminder to get back on track. I am a strong believer that trust and freedom when it comes to diabetes management is key to success.

Ian (age 13)
Well, I feel that it is beneficial to both of us because it helps my mom and I both keep our stress levels down.  I see also a downside to it, for let’s say that you are trying to hide it during a meeting or something and then you get a text saying something about your blood sugar levels, than you have to give them the whole spiel…. so there is no definitive answer as to if it is good or bad.

Brandon (age 15)
That’s chill.  Pros:  I don’t die.  Cons:  Nothing

Allie (age13)
I’ve never used the devices that let your parents monitor your blood sugar at all times, but I think it would be a pretty good tool to use. This way, your parents won’t have to worry when you go to hang out with a friend, and they can have you check if they see abnormalities in your blood sugar. The only con I can think of is if your parents get carried away and start nagging you on every little thing. Otherwise, this would be a very good tool to use.

Kate (age 14)
I don’t like it. It seems to me that if your parent is monitoring your blood sugar 24/7 it means that they don’t trust you to take care of yourself.

Luke (age 15)
Pros- they can always call me and let me know what my BG is if I ever get distract by something. Also if I am sleeping and I don’t feel my low they can call me to wake me up

Page (age 17)
I think the night scout / the cloud are great! I personally don’t have one yet but I think my sugars would be under control a lot more if my mom or dad would be able to see my sugars and text me little reminders to dose wherever I am! The only con I can think of is if my sugar is up and they get upset that I hadn’t dosed earlier.

Ashley B. (age 14)
I think that parents should know their kid’s numbers in order to help figure out what their basals should be, but I don’t think that parents should just take over completely. After all, your kid will eventually have to move out, and it would be pretty bad if they don’t know how to take care of themselves.

Philip (age 16)
I’ve never heard of that so I don’t know how I feel about it. I don’t really care if my parents know my blood sugar. Sometimes it would actually be better because they may be able to help me figure out why it’s doing what it is (for instance if it suddenly drops low). The pro would be that if something happened to me, like if I went into a coma, they would know and could help. The con would be that they might be over-protective

Zyler (age 15)
I don’t really care as long as they don’t nag about it all the time

Teen Topic #3: Do you really forget to bolus when you are with your friends? Is there a part of you that just wants to not feel like you have extra things to do in front of your peers? Are you embarrassed?

Kate (14)
I always bolus. Why would I be embarrassed?

Mercedes (15)
I personally don’t forget to bolus around friends, at least not on purpose. I do think some people do, but more because they don’t fell conferrable doing so around friends.

Garrett (16)
I don’t forget to bolus. I’m pretty good with making sure I bolus. Yes, there is a part of me that wishes I didn’t have to do extra things in front of my peers but I know that I don’t mind as long as I’m healthy. I am not embarrassed at all. 

Ian (13)
I feel like I sometimes remember more when I am with friends. I think that I do remember more because I am usually always going and thus have my bag and etc. with me so that gives me more of a reminder. I don’t want to have extra but you do what you have to. I am not embarrassed by my diabetes, but i sometimes prefer doing what i need to do privately to avoid questions and making people uncomfortable. 

Skylyn (15)
I’m not really embarrassed to test in front of friends, it’s just I don’t think most of my friends know I’m a diabetic because I’m not very open about it. Even if they do know, I still feel weird. I think if I had more friends who were diabetics then I may not be so awkward about it when I am with friends who aren’t diabetics.

Jessica (19)
I, personally, do honestly forget to bolus when with friends. It is not that I want to feel normal or fit in, but because there is so much going on and excitement that it escapes my mind. I am more inclined to check before the meal because there is more down time, but bolusing is harder because you are worried about paying, what’s happening next, being on time, or other things within the moment. The fact that I have a pump does make it easier because I can simply look down and push a couple of buttons. Shots is more time consuming and really does require a good 5 minutes that sometimes escapes the mind. I am in no way embarrassed, but I do admit that sometimes having to bolus is an extra responsibility that can be a nuisance when you and your peers want to head on to the next store or place. I know it is something vital but it is easy to forget when you are wrapped up in the gossip and next adventure with friends.

Ashley B (14)
I don’t forget to bolus when I’m with my friends, mainly because I’m worried that I’ll mess up severely and not be able to do things with my friends anymore. If anything, I’m more on top of my diabetes when my parents aren’t around, just because I feel the responsibility to actually manage it myself instead of having my parents take over. 

Zyler (15)
Yeah I get caught up in things.

Laura  (16)
Yes, actually, it is sort of embarrassing for me, but my friends are supportive and try to keep me intact with bolusing and everything.

Luke (15)
The only reason why I forget when I’m with my friends is because I’m usually having fun and time gets behind me. 

Allie  (13)
Most of the time, when I’m with friends and I forget to bolus it’s because we are doing something right before or after we eat so I get distracted. I don’t think I ever purposely not bolus for something I’m having, and I’m not embarrassed or anything.

 Claire  (16)
 I actually do forget to dose sometimes when I’m with friends, I just sort of forget what I have because my friends make me feel so normal that I don’t remember to dose for what I eat. I don’t do it intentionally, I just momentarily forget. I have no problem dosing or doing blood checks in front of peers or friends, because more than likely they’ll understand because I’m very open with my disease and how it affects me. When my friends and peers ask about it, I happily answer. I feel like there is no reason to feel embarrassed about something you have no control over and that actually isn’t embarrassing. It is actually a very good conversation starter.

Brandon (15)
I honestly do forget.  But if they don’t like me because I have an incurable disease, too bad for them.

Ashley C. (14)
I do sometimes forget to bolus when I’m with my friends but sometimes I do it on purpose because I don’t want to have to get all the stuff ready while they sit there and watch me like a hawk. I’m not “embarrassed” so much as annoyed when they watch me like a hawk so I don’t do it at all or I’ll put it in my leg where they can’t see it.

Jordan (17)
Sometimes I do forget.  It’s easy to forget when you are distracted.  I’m not embarrassed or anything, I just forget.

Teen Topic #2: Should parents tell their D kids/teens all of the horrible things that could happen to their bodies later in life if they don’t take care of their diabetes, or that they could die if they don’t take care of themselves? Should you take them to a dialysis center so they can see how bad it is to have kidney problems? Do these things help you want to take better care of yourself? Why or why not?

Ian (age 13)
I must say that there is no definite answer, for if a diabetic kid does all that is needed then no, for doing so could lead to paranoia, using more test strips and supplies, and then either going into debt, dka, or hypoglycemia or etc. On the other hand though, if a kid does nothing then maybe, for fear is a powerful tool. but I myself wouldn’t go as far as taking my kid to a dialysis center or to an amputee ward to scare them or what I said before can happen, and then I find that very rude to the people you are looking at also.

Jessica (age 19)
I definitely think it is important for children to know and learn about the consequences diabetes can have. However, I think using it as a scare tactic is not appropriate. Children with T1D should be educated on what they face daily, and what can come in the future. Taking them to a dialysis clinic and scaring them is only going to make rebellion and denial worse. I believe that not only experiencing some complications of diabetes, but knowing about them and ways to prevent them has helped me want to better myself. But, hearing my parents threaten kidney failure has not. Everyone thinks they are invincible: “Oh, that won’t happen to me”, but we all know that it can. Talking with your children about the consequences is a good idea and a gentle reminder when an A1C goes up too high certainly doesn’t hurt, but harping on the subject does. 

Laura (age 16)
I don’t think so. I mean it’s important to make sure your child understands all of the risks involved with diabetes but scaring someone into taking care of themselves doesn’t help. These things do not, they just generally annoy me and make me want to rebel more. (with the way I take care of myself)

Ashley C. (age 14)
I think the parents should sit down with the kid/teen and educate them on what could happen if they don’t take care of them self. But, don’t overwhelm them with to much information at once. Also don’t remind them all the time of what could happen because, in my case, every time someone tells what could happen I think “Hey, my pancreas is already dead what’s the point of trying to help it?” It also makes me think “Hey, I don’t care what happens anymore.”  This is around the age where teens just don’t care about diabetes anymore because they have most likely had it for 4+ years and they don’t want to have a disease,  so they think, “Nope, I don’t have diabetes anymore I’m normal,” so they will not have it that day.  So they do need to educate them on what could happen but don’t scare or overwhelm them.

Mercedes (age 15)
I think you should warn them, but not make it super gruesome to the point of scaring them. Knowing what can happen if you don’t take care of yourself does make you want to take care for a while, but then it gets pushed to the back of your mind. You also don’t want to keep bringing it back up or it will get annoying and they will get mad. Do not bring them to a dialysis center – it won’t help, just make them angry.

Ashley B. (age 14)
Telling your kids about the complications about diabetes is actually really…morbid, in a way. I mean, older kids might need to know that stuff, but five year olds might just need some help care-wise. That’s sort of like someone telling you that your favorite food can lead to heart attacks, blindness, and the apocalypse. I do think it’s important to let your kids know about the complications from diabetes, but using it in a way similar to blackmail is just over the top. “Make sure to keep all your sugars in check, otherwise we’ll have to amputate your feet/hands/legs/whatever, and you’ll never be able to go to dance class ever again.” Seriously, imagining someone telling that to their little kid (who probably doesn’t even understand the seriousness and permanence of losing a limb) because they forgot to bolus for a piece of candy is just absurd.

Skylyn (age 15)
If I was a parent and had a child with diabetes, I wouldn’t tell them until they were older and at least a teenager. Diabetes is scary at first when you are not sure what to do, and telling a young child about all bad things that could happen to them later in life if they don’t care of themselves isn’t good. I would suggest waiting until they are more mature and understanding of their diabetes.  

Luke (age 15)
Yes they definitely need to tell us about potential problems with our body, because if we don’t know about these issues then we won’t know what to avoid doing. Knowing these things have definitely warned me about problems that could be harmful to my body.

Claire (age 16)
If kids actually know what’s coming for them if they don’t take care of themselves then they’re more likely to stop the bad that is causing the destruction. Although in some kids/children it could make the situation entirely worse, overall, it is good to be able to visualize the bad future in order to change it.
Although I believe kids should know what the future holds for them if they don’t take care of their bodies, scaring them too badly could just cause backlash and depression. Hearing about the things that could happen and actually showing them are two different things. Now if the kid/child is in desperate need of redirection and a large dose of it, maybe showing them will be a slap in the face enough. But for the overall population of kids with diabetes, I would say no. Knowing what could happen does, in a way help me want to take care of myself better, but it also makes me scared and want to give up and stop trying. So while I agree with warning kids about what the future might hold, too much could be harmful. It’s good to keep a positive attitude about the disease, so as not to let it take over your life.

Allie (age 13)
Parents should tell their children about the stuff that could happen to them if they don’t properly take care of themselves because it helps for them to want to keep their diabetes in line. I wouldn’t say to go as far as taking them to a dialysis center, unless they really don’t want to take care of them self and you have to scare them straight. It is good to inform them what could happen, though, so they could look it up and plan ahead if they don’t properly take care of their self in the future, or they just want additional knowledge on the subject.

Page (age 17)
I believe that parents should talk about the complications we could have if we do not treat our diabetes correctly, but I also don’t think they should bring it up regularly because we already know what could happen.  It can sometimes get old or useless because I zone them out when they say things over and over again like that. If our parents did take us to a dialysis center I think it would help us realize what could actually happen but I don’t want them to scare us into thinking that we will end up that way. It does help me want to take care of my sugars more just because I want to live a long and healthy life, but it isn’t as easy as it seems to keep your sugars regulated all the time.

Garrett (age 16)
No, because I know I have to take care of myself regardless of health problems or not. Knowing the problems help motivate me to take care of myself but I don’t want to hear about them all the time. I already know what they are.

Brandon (15)
I think kids should know about the consequences, but not to a point where they’re terrified of it.