Question about Kids & Continous Glucose Monitors?

My son is new to pump therapy, 3 weeks now, and we also have the CGM which he’s supposed to be getting hooked up on next week. I’ve been reading discussions in the CGM Group and most of the comments aren’t very favorable about this device (Medtronic in particular). I now have hesitations about having my son use this device. I don’t want to traumatize him with the negative effects of it since pump therapy is going well for the most part. Do any of you have children that are using the pump & CGM and what have your experiences been? How accurate is it in detecting highs and especially lows? By the way, my son is 10, dx’d Jan 09. He’s on the Medtronic Paradigm Minimed. I’d really, really appreciate your comments. Thanks.

Roulla & Johnny,

My son Austin is almost 4, was diagnosed in Sept 2008 and has been on the O-Pod since January 2009. We started with the MiniMed CGM recently, and I have to say that we are enjoying it. There are times when it is not 100% accurate, but there are times when it is within 1 point of our OmniPod BG number. It has alerted us to several overnight lows that my son did not wake up for. If this is the only reason that we use it, it is TOTALLY worth it.

If your child is more prone to wake up if too low/high overnight, or if you want if it for trending, it an invaluable tool. If you want it for spot on numbers 24-7, it is not for you.

Joseph, Thank you so much for responding. Its wonderful to hear your son’s doing great on the CGM! Yes, we definitely want the device to alert us to the highs and lows. That’s the main reason. Another reason is to get a tighter control of his BG numbers. We are concerned for this long term health as well as his short therm. His last A1C 3 weeks ago was 9.2, still very high. I know he’s a new diagnosis, but we want to help him achieve a healthy A1C. If you don’t mind, I have a few questions. Where exactly do you insert the CGM on his body? My son’s very lean, so with the pump insert, we only have one option, his tush. Does he experience pain with the insertion? The needle seems pretty long. How many days can you go before replacing the sensor? I know Medtronic recommends 3 days, but I’ve read that people can go up to 6 days or more. Thanks for you input. Sounds like your son is doing just great!!! He must have two wonderful parents.

My daughter Ella is on Omnipod!! We love it!! No tubing and lots of freedom. The PDM (personal device manager) is a blood glucose meter, so we still do finger pricks. This is great so far and a world of different from shots.

Also b/c she is 2 years old it lets her eat more as a snacking style.

Omnipod is working on a CGM, and maybe in a few years communication with pod from cell phones…won’t that be cool.

Hi Erin, Thanks for your repsonse. That’s wonderful that the OmniPod is working for your daughter. I’m amazed at the technology thus far. I’m sure we’ll see much more advancement in the field. Did you happen to read the post above by Joseph? His son uses the OmniPod with the MiniMed CGM. I don’t know how that works. Very interesting. By the way, your daughter is adorable. Our kids were diagnosed in the same month. :slight_smile: My son was diagnosed Jan 22.

Roulla & Johnny,

My son Austin (3 1/2) is also lean. The only place that we have tried it is on the upper end of his tush. It works well, and he hasn’t seemed to experience any discomfort. He was more uncomftorable with the MiniMed trainer person being in our house 9as he is a little shy at first). We have been using the same sensor for up to 9 days! After 3 days it wants to turn itself off, but you can go into the menu, turn it off, and then turn it right back on. It still takes a few hours after this process to calibrate correctly, and during this time you get no readings. I am not sure we wil continue to use them each for 9 days, but it is good to know that you can. We will probably stick with a 6 day rotation from now on, to help minimize risk for infection.

Have you started CGM therapy yet? If so, how is it going?

Hi, my 8 yo son is on the Opod for 18mths and uses the Dexcom CGMS. We struggle greatly with getting consistent results from the cgms. Dexcom is approved for 7 days on. We put it on this tush which seems to be the most consistent readings in kids. Remember these devices are not approved for kids this young so it has not been tested. if they want to shut off you just turn it back on and reboot the cgms as has already been noted. I would love for them to work consistently our last try was better but it still was 50 to 100 pts off from what his real BGs were. At times they coincided. ONce at night he was 62 and the monitor read 110. Luckily he senses his lows and wakes up for them otherwise I dont get regular sleep.

Eric (Caroles Hubbie)

Hi Joseph,
Thanks for sharing the info. Its quite helpful to have all this background before getting our son hooked up on it. We haven’t started CGM therapy yet. Its been postponed till next week. We’ve had some rough nights this week, so its just as well we don’t add one more thing right now. He’s a bit apprehensive about it anyway. Although if he were hooked up, it may have alerted us to his highs at night and saved us all from sleep deprivation.

Hi Carole,
Thanks for sharing your experience with the CGM. Sounds like it can be a bit frustrating when the numbers are so far apart b/w the CGM and the BG meter. What do you have the alarms set for? If his BG target is 90-150, do you set the alarm to sound off for a low at 100 or 110? Do you think you’ll continue with the CGM? My son senses his lows as well, which is great,but we’re hoping that with the CGM we’ll be able to avoid the many lows and highs. Some days he’s just like a yo-yo.

My niece started using Minimed cgms a year, year and a half ago? Forgot exact date. cgms inserted in her arm. First two times were great; numbers good. Next two to three times she had pain after the EMLA wore off. The last time she wore it, Sis must have hit a nerve because pain was excruciating. Had to pull sensor and that was the end of that. She refused to wear it after that. Well… we waited, and waited for Minimed to reduce the size of the introducer needle, which was supposed to happen soon. Since they did not we switched over to Dexcom 7 Plus (still use Minimed pump) and we love the Dexcom! I would try the tush area (where there is a lot of fat) for the Minimed cgms. I think using the arm, Sis should have used a shallower insertion but Minimed Rep said not to. If you use EMLA, numb the area for a solid hour and a half so he is good and numb, and use the tush, I think you will do fine. Dexcom seems to be much more accurate. But even Dex is not in range for her about 25 percent of the time. Dex missed a low (Dex 87/fingerstick 45), and Dexcom sent us a new receiver, but it has been off that much again once or twice. It is extremely helpful 75 percent of the time, and our Flash meter now reads 132 as an average, not 156. It is an added tool. Neither cgms has been accurate enough for us to dose off of it. For a lot of parents, cgms seems to give more accurate readings than we have and for most of the time. Dexcom feels like a pump site insertion; not painful at all for her. Sis has no hesitation about inserting Dex site; very easy to use. Carelink (Minimed’s software) is more extensive than Dex’s. But Dex’s software is good enough. Carrying around a separate monitor can be a PITA sometimes but a lot of the time she just puts Dex near her or in her purse and carries it. She does not want to wear the extra device on her person. When Dex integrates with Animas or Omnipod maybe we will change pumps or maybe by then Minimed will have reduced introducer needle. She had Animas pump and we greatly prefer the Minimed pump. Will wait and see what the future holds but very happy with the Dexcom 7 Plus. Oh, forgot to mention the best part. Minimed’s cgms, you wear for three days, can restart leaving it on the body. After six days, you then have to carefully take sensor off skin, recharge it, and put it back on and restart, hoping thing won’t move. Dexcom, you get seven days right off the bat before you have to do anything, restart is simple and you don’t have to remove the sensor.

Thanks so much for sharing your neice’s experiences with the CGM. I really appreciate your insight. The needle on the Minimed does look intimidating. I didn’t realize they’re supposed to be reducing their needle size. Once we go through the training, I thought I’d try it on first to see just how painful it is. My son is lean, so I’d hate for him to have pain with it and then decide not to wear it. Thanks for the info on the Dexcom too, seems like a better option. You sound like a very caring and wonderful aunt. What a blessing you are to your sister and neice.

For the Minimed sensor, you should never insert without numbing the area with EMLA, and being sure to let the EMLA take effect (at one and a half hours EMLA is at peak anesthesizing (sic) strength). My sister chose to use the arm because we use tush area for pump sites and she did not want to run out of real estate. Cgms sites are also supposed to be very accurate on the arm vs. tush. If using the arm, you should tilt it back to get a shallower insertion, but Minimed Reps do not agree with this. So I would get help from another parent using an arm site if I were to use the arm with the Minimed product. If going with Minimed, just use the tush for starters until you get a feel for it. There is a lot of fat there. My niece did not feel the sensor going in, pain came after EMLA wore off (improper insertion, improper location… for her). We are using the Dexcom in the upper tush area; she won’t let her Mom use the arm. The hassle of having to restart on Day 3 (and you might not be home when cgms demanded a restart) was another PITA. Dex, gives you a lot more time before you have to restart and/or change sensor. But carrying the extra receiver is something you would have to take into account if you were to try the Dex. It’s another thing to carry and/or lose.

My son’s docs say he is too young to wear one all the time, with not enough areas for placement with his pump sites. But he did wear it for three days to identify trends. He tolerated well and the results were pretty consistent with the readings we were getting with his meter. Although we didn’t actually see the numbers until after the 3 rd day when he went back and they removed the sensor and uploaded the readings. It was very helpful, we were able to see that after lunch his BG never really came back down. It just rose from eating and then stayed up, probably because his lunch had more fat or protein compared to breakfast. Plus his doc said that during the daytime hours everybody secretes more cortisol which can keep BGs elevated and then it tapers off after evenings hours. They had us start giving him a dual wave bolus for breakfast and lunch and then just a normal one at dinner (unless he has a higher fat/protein dinner like pizza then I do a dual waver for that also) And so far we have been seeing much better numbers. It also helped us see which basals needed to be adjusted through the night. I would be interested to see if they would want him to wear it again at another time just to monitor his trends after making the changes. He wore it on his bottom, his pump site was in the other cheek. They have me using his bottom for everything since he is still small and doesn’t have many other usable areas.

I hope you are having a good experience with it. I seems like it would be nice to see how one is trending at all times throughout the day. Thankfully, Rory does show some obvious signs of when he is going low or is too high even though he may not be able to tell us specifically what is happening yet.

I would go with the Dexcom because it is far less intrusive to insert. I think that’s a huge issue, though plenty of kids are wearing the Minimed sensors I’m all for using the glucose monitors part time. I certainly can get tons of information with part-time use. For younger children, once a month, to refine basals, could work out very well. During the teen years, BS is so erratic; we make changes of some sort every evening. Even DN is going to run out of places to put the site on the tush, so I get what you are saying about no place to put both sites. Having a cgms on hand for part time use when needed would help a great deal.

Thanks for the insight Jan. I initially thought once you start on the cgms you always have it on. Its good to know that you can use it part time for trending and troubleshooting. I honestly feel bad for my little guy. His tush is a human pin coushion and the thought of one more thing one him really bothered me. He’s a trooper though and doesn’t complain. Everytime we do a sight change he does ask if he has enough fat on his tummy…one of these days I’ll be able to say yes. We’re starting the cgm therapy in 2 weeks, so I’ll let you know how it goes. All this great information really helps. Thanks!!

Although studies have shown to get the benefit you should wear cgms all the time, I just don’t agree. You download and analyze the information so of course that would help refine basals, ICRs, etc… Our problem is that her basals (usually just one portion, any time from 6pm through 2:30a.m. to 3a.m.) change radically and almost every night. We may need a huge increase (from 1.8 to 2.4 per hour from 6pm to midnight is not uncommon). These huge increases started six months before she turned 12. Prior to that, although she changed a few times a week, changes were in normal increments (i.e. go up .50 or twice that) per basal time period. I will say once again, from her wearing both the Minimed and Dexcom devices that if we had to do it all over again, I would go with the Dexcom cgms even though we have a Minimed pump. I think the introducer needle on the Minimed device is barbaric. Dexcom reduced the size of their introducer needle twice, and they may do it again. Not to mention the ease of use, not having to restart for seven days. Once a month use or twice a month use, you could set his basal patterns and ICRs very accurately. She does have stable periods (usually a week and a half out of the month, maybe two weeks). When we took off her second sensor, we did not put one on right away (she is sensor-less now for three days). Her Mom will put one on over the weekend. Lots of people use cgms part time. It still helps tons.

Reading this out of interest as my 4 year old is now on the CGM. Since you wrote this in July of last year, wondering how it’s going? I agree with all that others have said on the CGM from my experience, although we only use the tush for my daughter’s CGM (not the arm). I would add that we had some skin rashes due to the adhesive for 6 days and the trainer recommended Hydrocortisol cream, which has really helped clearing up sites quicker.
Since your son is so lean, have you considered the Medtronic Silhouette? We recently switched to this and love it. We used to use the Quik-set, but had more kinked cannullas. the Silhouette goes in at a 45 degree angle and if for leaner people, I believe. We’ve not had any problems with the Silhouette…I wonder if this might allow your son to start using alternate sites despite his leanness?

Hope it is going well!

My son, age 5, has been using the dexcom sensor (sensor in his arm) and pump for a few years now, and I don’t think I could live without them. It may have saved his life a couple of times at night-- he doesn’t wake up if he’s low. It has also led to a number of sleep-deprived nights that were not necessary, and the accuracy can be off sometimes, but overall it’s been worth it. I also have type 1 and I don’t use one myself, since I can sense the lows before it alarms, and I wake up if I’m low.

Just want everyone on the dexcom to know that your blood glucose readings will be skewed if you take any of the 100s of acetaminaphen products out there. A pump trainer told us this. Also, my friend loves the Dexcom for her son since he has hypo unawareness but he doesn’t wake up when it vibrates or alarms at night… so she places it in a metal bowl by his bed and the vibration in the metal container seems to work to wake him up !

roulla & johnny,
my son, ben-3, just received his cgm…were waiting for the educator to schedule our class.
i am glad you have the SAME q’s i have!!
it will be nice to share the highs and lows…no pun inteneded…with experiencing a new device.