I am a school nurse who has diabetes and who began using a Dexcom monitor in May 2010. Now that I have a few months’ experience with the technology, I believe that it would be a huge benefit for all children with diabetes to use CGMs in school at all times. I am now working on an independent learning project as part of a master’s degree program in which I hope to develop strategies to increase the use of CGM in schools. I would love to hear from parents whose children wear monitors while at school, or who are considering this, in order to learn of the successes, failures and problems with dealing with teachers, school nurses, administrators, insurance companies, doctors, etc. in starting or managing your child’s CGM at school. I believe that it is in the best interest of students’ glucose control to have this trend info available and that it would also be a boon for teachers who could be relieved of monitoring your children so closely as the trend alarms can perform this function for them. Thanks for any information that you can provide to me! I hope to design a brief survey as part of my project and that you may be willing to complete this in the near future. Thanks for your help! I hope to be able to advocate for your children through my project. Bob Carlson, RN.
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Hi Bob,
My 7 year old son has been using DexCom for a year. He used it throughout his school year last year. He’s been in school for a couple of weeks this year and I’ve purposefully not put it on him.
There is a great concern of course that children will go low at school, not feel it and be under the care of teachers, who although may be trained in what to do, have the primary responsibility of teaching multiple children and thus may miss something or be slow to act, etc. Last year, with a new nurse, teacher and frankly a revamped way to manage Caleb’s care in school, it did provide me some comfort for his safety.
Not only that, but his bg checks tend to be fewer while he is in school and less flexible. So highs may not be caught as timely as at home where there is increased flexibility. There were cases last year where Caleb’s CGM alerted to a high and it could be dealt with immediately and insulin could be given time to work before sitting down to lunch or snack, when his bg would have otherwise been checked.
I see the cons as twofold. 1) The ability for school staff to really understand the CGM’s use and it’s accuracy. There is definitely a learning curve. 2) The increased disrupted to the school day. With more alerts there is more time spent being diabetic at school. The focus is increased.
Thus far this school year things have gone smoothly. There was one day of bumps that I know the CGM would have avoided or at least helped with, but overall, Caleb comes home happy and focused on his school day. I definitely feel like there was more focus on diabetes last year with the CGM and his assessment of a good or bad day at school was based upon his bgs and not the academic or social aspects of his day. This year, his bgs are the last thing we talk about when he gets home.
I am therefore torn between the balance of Caleb’s physical and emotional well being. I find them equally important. His numbers, with the exception of that one day which was only a day of a few stubborn 200s, have been good. So serious lows and he has been able to feel them. Under those circumstances I’m finding it hard to justify adding the emotional burden of the CGM to his day. I’m anxious because I really like the benefit of knowing the full picture between the fingersticks, but I cannot discount Caleb’s current disposition. There is great value in seeing him happy and comfortable with himself.
I actually have a different experience with my son - but he’s 10 so that could be a factor. He started wearing the Dexcom in May of last year, and during that first month of Dex - and last month of 4th grade, we turned the alarms off because I just wanted the data so I could adjust stuff during time periods I didn’t feel like I knew what was going on.
This year though, in 5th grade, I feel like it’s allowed him more freedom - when he comes out of school to play with his friends he just looks at the Dex to see if he should have a snack first, instead of doing a finger stick (and he knows what “borderline” numbers to go by, since the Dex isn’t completely accurate) so I don’t have to ask. He also goes to the nurse less, since it catches stuff before he would need to. He seems to like this and I get the impression that it makes him feel more confident instead of more focused on diabetes. He’s definitely the kind of kid who likes to know there is something monitoring him, so he doesn’t have to worry - he was diagnosed with anxiety before diabetes, and I wasn’t sure if the Dex would make him obsess, or give him security - it’s definitely been the security factor.
The other day, for the first time ever at school, he checked his bg at lunch and actually forgot to bolus. The Dex caught it during class, he checked and bolused in his seat, and had the bonus of not going incredibly high, and not needing to trek down to the nurse. Of course, since he’s 10 - he does all this on his own, and the staff doesn’t do anything really. His teachers know he’s wearing it, and they know it’s not 100% accurate, but they leave all the decision making to him, and let him call me if he’s not sure. It’s also made it so that I don’t ask as many questions after school because I just ask for the Dex, download it and figure stuff out on my own.
I think the CGM in general is a tool that is useful but it depends so much on the kid, the age of the kid, and the family, that it’s different in every case. My son wanted a CGM way before he ever wanted a pump, and even though I have told him he doesn’t have to wear it all the time - he loves it and now none of us can imagine not having it. But if it ever became an issue and he could have decent numbers without it, I wouldn’t push it at all.
My son Joe wears the Dexcom 7+ and loves it. It provides him with a sense of comfort of knowing where his number is, where it is heading etc. With that said, I do think it is a personal and family choice if the use of a CGM is right for them. It is a lot of data and a family needs to learn to be able to look beyond the data and find trends etc.
Now, for use in the schools we have had some difficulty. Joe’s school nurse has not taken to it well and has actually waited for his real BG to go low before treating…instead of heading off a low when the Dexcom is reading 80 with double arrows down. This has been frustrating, but I continue to educate and get support from our Endo group in dealing with this issue. I also sub as a school nurse…so I too see the value in the CGM at school for families that are wanting to take that step.
Natasha - That is a great perspective. This year, and each year since Caleb was in preschool, Caleb has taken on a little more of the responsibility. There always seems to be something natural for him to take on to make him a little more independent. He’s not at the point where he can administer anything by himself though, and that is why it is so disruptive. He has to raise his hand, tell the teacher, the teacher calls the nurse, the nurse comes down, he gets pulled aside and the assessment proceeds, which may or may not include a call to me… you get the picture.
I wonder when that will change. I guess it will naturally present itself. FWIW - I slapped a sensor on him today. We’ll see how it goes…
Reyna! How are ya’? You sound rather calm about that 80 with the double arrows down O_o.
Thank you all for your responses to this discussion. You are educating this school nurse to the many issues involved in using CGM with kids! I’m still not happy myself with the “invasive” nature of the device. Although I’ve had type 1 for nearly 30 years, I avoided the pump because as an adult it was easy for me to tolerate multiple injections and I have always been able to maintain a1cs around the normal range. My loving wife made me agree to adding CGM to my therapy when I had to be away from my family for 5 weeks this summer (grad. school). She was worried that I might miss a hypoglycemic episode developing, and not be able to treat it in a timely fashion. Her judgment was good, I believe, as I made it through a grueling 5 weeks of school with little sleep and (thanks to the Dexcom) no reactions. Of course it also has provided me with amazing information about my glucose response to meals, and allowed me to compensate successfully for unexpected highs. I just completed my first 3 months on the monitor and my a1c tested at 5.8 this week, (NORMAL!) and without the hypoglycemic risks. Enough about me.
Looks like this discussion will provide as much for you all as I hoped to get out of it myself. Sounds hard to balance the technology with the freedom to be a kid. You’re right, Lorraine, there is quite a learning curve for all of diabetes and the addition of CGM only makes it more difficult-especially for teachers who have obligations to so many other students as well. Most of the school nurses in my college program this summer had not even heard of CGM, so you need to expect to do a lot of teaching in the next few years. With luck, your son’s nurses will have the humility and curiosity to accept you as an authority and try to learn as much from you as they can.
Perhaps you could use the monitor on weekends- as I see you have started- and try eating according to the schedule that your school meals and snacks are presented. That would allow a vacation from the CGM, but still give you some access to post-meal sugars to know that he is not going too high. Because glucose variability may be as significant as a1c in avoiding complications, it’s important to have an idea about post-meal values as well. There’s nothing like having all that information when it comes to avoiding long-term complications. If he can accept it at times in school, that will get you the best information from - as Natasha says - reviewing the downloads.
That said, you are doing the right thing by seeking a balance between your child’s physical and emotional health and as his mom, will be the best judge of when and when not to monitor .
If you do choose to use the monitor in school, another option might be to try setting fewer alarms so that there is less disruption or attention drawn to your son in the classroom. You could try teaching him to just check the numbers every 15 minutes, or half hour or so, to get the benefit of the monitor with fewer negatives.
Keep up the good teaching, Reyna!
If any of you think that having another nurse talk to your school nurse may be helpful, I would be glad to contact them via email if you can provide the address and a synopsis of the issue. Thanks again to all for your contributions, as I am learning a lot.
Hi again Bob,
I love your positive outlook. 
I agree about the wealth of information that the trends show relative to food. Having the education that has built up over the past year actually helps greatly when Caleb isn’t using DexCom. I have a greater sense of confidence and security regarding what’s going on between the dots. I had always imagined his bg rising to astronomical levels before coming back down. I was actually surprised to see how in most cases that does not happen at all.
I think the education component has been the biggest value of DexCom. Caleb has always maintained very good A1Cs and I was surprised when his A1C did not materially change after using DexCom. What I realized though (or perhaps convinced myself) is that the quality of the A1C is better because the peaks and valleys are somewhat leveled and there actually hadn’t been much room for a change in the overall A1C number anyway.
I’m finding it very valuable to hear how other kids, particularly boys and those of similar age, react to good ol’ Dexie. Caleb would never say he loves it. Although he is responsible about his care, he doesn’t worry about his bgs during the day - that’s me doing the worrying. I suppose that’s all about personality. Just thinking about my older son and his approach to things, I could see him feeling comfort from the continuous information.
Yes we shall see how school goes. This sensor is not off to the best of starts which is another problem. Uncooperative sensors result in completely meaningless disruptions. Caleb’s school nurse is an angel. She’s actually been asking where DexCom is. I think it gives her the comfort you are referring to, Bob. This is the first year we have the same nurse and aren’t training someone - it’s been a refreshing change as compared to the last three.
Thanks for asking for the input and for reaching out so sincerely. It sounds like a great thing you are doing.
Hi Bob,
This is the first year my daughter has attended school, she was home-schooled previous. Due to her extreme lows, she still has active beta cells that produce insulin at unpredictable times, I put her on the DexCom monitor. She is on her second week of wearing it and so far it is okay. I have seen a lot of discrepancies in the monitor numbers vs actual finger poke numbers which this skews the trends.
It has given me and the school nurse a little more peace of mind as she had never dealt with a child who could have a BG of 36 and acting perfectly fine and who could drop from 200 to 36 in less than 30 minutes.
Her teacher did not really concern herself with the issues so therefore the monitor really hasn’t impacted her.
Rhonda
I can relate to being calm with 80 and double down. The monitor is catching the low either before it occurs or after just depending on how accurate it is at that given moment.
You gives carbs to bring the low up and you ignore the monitor as it takes more time for it to catch up.
My daughter was diagnosed almost 2 yrs ago and has constant lows due to beta cells that survived. She has an average of 27 lows under 50 per month prior to Dexcom therefore an 80 with double down arrows is really not a big deal an has an easy fix.
Woops, sorry.
I meant to refer more to the fact that the nurse didn’t do anything about it. I can completely relate to being calm with an 80 and double arrows down - ready to act, but calm. It would take a few deep breathes for me to be calm with the nurse for waiting for the low to actually happen.
I agree!! My child’s teacher told her to “not interrupt” her when she is teaching on the very first day when my daughter raised her hand to go to the nurse.
Luckily, the nurse was just scared enough not to know what to expect that she checked in with my daughter through out the day. My daughter told her she felt bad, (this means she is already in low 40’s), and the nurse took over and acted quickly.
The teacher received the butt chewing she deserved by all of the administration in the school.
This is the reason we felt it necessary to hook her up to the Dexcom. Now it beeps and interrupts the teacher.
I’m glad DexCom is providing you that comfort and it sounds like the nurse is a great member of your team.
We still have the occasional bump in the road when people forget some of the things we agreed to, but a prompt, friendly reminder usually does the trick.
Thanks for your input, Rhonda. Your own experience with a teacher and Reyna’s with her son’s nurse is just why I thought cgm could play such a positive role in schools. Too bad Reyna’s son’s nurse did not treat earlier on the first plummet, but she is learning how to use the cgm as we all must, and (we hope,) learning the value of trend information. She was also probably following his monitor’s instructions to base treatment decisions upon finger stick information rather than simply accepting the number and trend on the cgm. We all must accept the time it takes to learn how to judge what action is best based upon numeric, trend and behavioral signs. Keep educating us nurses (gently)!
As regards the “normal” behavior at 36, the MD who diagnosed my diabetes was not overly concerned regarding glucose levels in the 30s. He pointed me to a research study that showed that many normal individuals run in the 30s-40s fasting without adverse effects. That study suggested that perhaps the normal range needs to be revisited. During the time that I’ve had diabetes (29 years+/-) normal range was at first 80-120 mg/dl and not long thereafter was lowered to 65-110. Personally, I have had glucose levels as low as 17 and still been doing carpentry work, though at a very slow rate and poor quality. I’m not advising accepting low levels, just suggesting that on occasion they may not be so damaging, as long as they do not lead to seizing and loss of consciousness or decreased mental status. I think everyone needs to learn their own acceptable range and also realize that this may change depending upon the circumstances - another reason why the cgm is so valuable with its trend info!
I wouldn’t worry too much about the finger sticks screwing up the monitor trends. I don’t know a lot about the algorithms that the monitors use in order to balance sensor input with finger sticks, but from my short experience (4 months), the dexcom, at least, seems to use the finger stick info well to adjust its assessment of glucose level. There is definitely a lag between blood glucose and interstitial glucose trends of a few minutes and it sometimes seems like the adjustment that the dex makes is weird when these numbers are not in sync. However, if I wait a short while, I usually find that the adjustments in trend that the dex has made were appropriate. Although it is nice to have both # and trend info, I find that the trend information is so much more valuable when it comes to maintaining sugars in a good range.
Finally, when it comes to teachers, although it would be nice to have your daughter’s teacher more concerned about her issues, maybe it is not realistic to expect this in all cases. Good that the administration told her to pay attention to your daughter’s requests. I suspect that one great value of cgm is that it can safeguard your kids even when they don’t get the most caring, attentive teacher one year. It is also nice to think that the teacher can be relieved of concern for the medical status of kids in the classroom enough to concentrate on the learning of the entire class.
Fun to hear about the home-schooling. My wife is homeschooling our daughter (now in 6th grade) and home-schooled our son until high school with the exception of 1 or 2 years when she knew that she wanted him to experience teachers of renown in our district. By high school, my son decided that he wanted to be able to take laboratory courses, so enrolled in school. He’s now in his junior year and enjoying the challenges of traditional schooling. We have been lucky to be able to choose whatever mode of learning seemed best for our family at the time.
Be sure to give the dex a little more time, Rhonda, as I think that both you and your daughter may eventually come to feel like you could not live (comfortably) without it. Until, that is, we have a cure!
Bob