Getting frustrated with Dexcom... any insights to share?

[Jaedima]

My 4.5-yo son was dx'd with T1D late last year and has been on the Omnipod for several months now. We've recently begun trying to start with the Dexcom CGM, but without great success. Our first attempt worked well, giving us about 5 days' worth of very helpful data-- until he dropped the receiver in the toilet. Since having the extra BG data over the previous few days had been helpful, we opted to pay for the replacement receiver, expecting that we would be able to make use of the system afterward.

Unfortunately, since getting the new receiver, we've gone through four sensors without getting more than a few hours' worth of BG data, many of those datapoints being false readings that were way off from what fingerstick readings showed. Every time we call tech support they essentially tell us to try another sensor. (Thankfully they have been good about sending replacement sensors without charging us for them.) However, given that we had good results from the first sensor and receiver and haven't had any good results from the new receiver, it's hard not to wonder if there's something wrong with the replacement receiver. We'll get reasonably accurate numbers for a few hours after putting in a new sensor, but then the numbers start spiking (completely out of line with what fingerstick tests say) and eventually the receiver goes to ???'s, gives errors, and the sensor fails. Or the receiver will spontaneously turn off and go back into initialization mode several times. Or we'll find out after removing a sensor that there's no wire sticking out.

Do people really have this many problems with their Dexcom sensors or receivers? I'm wondering if there could be something wrong with our replacement receiver, and if the sensors are really this finicky that it's normal to have such a high failure rate. Add to this picture a little boy who (despite valiantly overcoming his initial fears of getting injections and putting on new pods) is still terrified of putting on new sensor. I really don't like the idea of putting him through the agony of constantly trying new sensors, only to have them fail shortly afterward without giving us the benefit of monitoring his BG. Are other CGM systems more reliable? Is the state of the technology this uneven that it's just what we have to deal with if we want better BG control?

[selketine]

We've used Dexcom since around Oct (Navigator before that) and I haven't had any problems keeping a sensor for 7-14 days generally.

Would the Dex rep in your area have another receiver you can use? Is there a way to meet with the rep to let them see your technique - and perhaps show them that you are doing it correctly, etc.?

Seems like it could be the receiver but if you haven't gone over this with the rep in your area - getting some in person help - I think that would be a good place to turn first - if you have a rep close enough.

Have you tried using EMLA cream before doing an insertion? We use it and leave it on for around an hour before washing it off and putting on a sensor and that seems to really make the insertion pain minimal for him.

[LantusFiend]

Originally Posted by Jaedima

Or the receiver will spontaneously turn off and go back into initialization mode several times. Or we'll find out after removing a sensor that there's no wire sticking out.

I'm on my fourth receiver, 20 months of Dexcom use. That means three have been replaced. Two of the three had spontaneous restarts where they'd go into initialization mode. In the first case, that took about two weeks before it turned into an error that did not resolve; the second time, from whacky restarts to a failed receiver took less than two days.
My other receiver didn't really give out; it just stopped beeping for alarms.
Anyways, the only time you should see it turn off and go into initialization mode is if you (or maybe your son) go into the menu and go to shutdown, which shuts it down, and then pressing a button makes it initialize. It may also do that if you let the battery run down so that it can't turn on and then you charge it back up. Otherwise, it's on it's way to dying. Have you told customer service?

If there's no wire sticking out from the sensor, it wasn't inserted properly or else broke. If if broke, Dexcom definitely wants to know and so does the FDA. If it didn't insert properly, that probably means you didn't pull the collar back before taking the inserter off - at least, that's the only way I've made that mistake.

[ecs1516]

We have never had a receiver replaced. I just bought a new system because we were out of warranty. The old one we were using was from 2009. Is there anyway the Dexcom traniner could let you borrow a receiver to see if that stills happens? My son gets 14 days or more out of each sensor. Does the skin look okay underneath when you take it off? My son's skin looks perfectly normal when we take it off. His younger brother was allergic to the Dex and would look terrible underneath and it would start giving bad readings because of the fluid produced under the skin.

Is the receiver being dropped? How does he carry it?

Also where are you inserting them?

We are using backs of arms because that is the only fat area we have to use.

[swellman]

What do you mean by "no wire sticking out"? The wire is missing or folded under? I can say from the dozens of sensor I have placed and removed the shape of the wire after removing the sensor has very little to do with how the sensor behaves - they come out in all kinds of crazy shapes. If it's missing that another completely different and potentially serious situation as it may still be stuck in the body.

Always give the sensor 24 hours before replacing it - in my opinion. Sometimes it just takes time to settle down. Only enter BG when the BG is 20% (NOT points) off.

Try not insert into muscle - it's a long wire and needs some soft tissue in my experience although I've seen a few good sensors that I thought was directly in muscle.

We place them in the upper back of the arm where thee is little muscle. I see more issues with direct pressure on the sensor like when lying on it.

Make sure you're not using any medications with acetaminophen (Tylenol).

[Jaedima]

Thank you all for your helpful comments! I'm still waiting to hear back from our local representative to try to arrange an in-person visit; I'll be sure to ask if she has a spare receiver that we can try to see if that makes a difference.

The first failed sensor was the one that didn't have the wire sticking out after removal, so the tech support rep thought it hadn't been inserted properly. Given how tense DS was at the time of insertion, it's possible that interfered with getting it inserted correctly.

We tried a benzocaine wipe with one of our pod changes a while back that seemed to help; we'll try that with the next sensor insertion.

I didn't realize people had successfully put their CGM sensors on the back of the arm. (We've been using the belly, as recommended by Dexcom.) The back of the arm is our preferred site for DS's pod, since it's the only place where he seems to have any fat at all. Maybe we could consider that as a sensor site, although then there's not much real estate for alternating pod sites. But it would help reduce the likelihood of DS lying on top of the sensor when sleeping.

I did notice some irritation on DS's skin where a sensor had been earlier, so maybe that could be an issue.

We haven't had as much contact with our local Dexcom rep as we have with our local Omnipod rep. Now I have a bunch of questions for her. Thanks so much!

[ecs1516]

Originally Posted by Jaedima

Thank you all for your helpful comments! I'm still waiting to hear back from our local representative to try to arrange an in-person visit; I'll be sure to ask if she has a spare receiver that we can try to see if that makes a difference.

The first failed sensor was the one that didn't have the wire sticking out after removal, so the tech support rep thought it hadn't been inserted properly. Given how tense DS was at the time of insertion, it's possible that interfered with getting it inserted correctly.

We tried a benzocaine wipe with one of our pod changes a while back that seemed to help; we'll try that with the next sensor insertion.

I didn't realize people had successfully put their CGM sensors on the back of the arm. (We've been using the belly, as recommended by Dexcom.) The back of the arm is our preferred site for DS's pod, since it's the only place where he seems to have any fat at all. Maybe we could consider that as a sensor site, although then there's not much real estate for alternating pod sites. But it would help reduce the likelihood of DS lying on top of the sensor when sleeping.

I did notice some irritation on DS's skin where a sensor had been earlier, so maybe that could be an issue.

We haven't had as much contact with our local Dexcom rep as we have with our local Omnipod rep. Now I have a bunch of questions for her. Thanks so much!

Yes , Dexcom cannot recommend back of arms because not tested there but many people use that area. Dexcom also cannot tell you that you can restart it at day 7 for 7 more days. But many people do that too.

[Jaedima]

Hmm, just thinking about the back-of-the-arm site some more-- if we put a sensor there and we also need to put the Omnipod there, some of the time we'll have two devices on the same arm. Dexcom recommends putting the sensor >3in away from a pump site. How do you manage this with small kids?

[betty6333]

we often have the pod on done arm and the dex on the other. he doesn't care if one is showing, but generally I get the sensor and the pod high enough that it isn't an issue. He has worn sensors on his arm since he was 6 ( he is 10 now), and then we rotate the pods, because they are injecting insulin, so he doesn't get the fat destroyed from using the same spots over and over.

sensors though, are almost always on the arm.

I don't have any issues with the sensors ( although it is possible that there is a bad batch from time to time as they are hand dipped) We got less than stellar results though in tummy or butt, because he was constantly kinking the cannula. Arms though he doesn't pinch and move the fat around so it never kinks there, which is why we use it! plus he gets great circulation in the arm, so the lag time is very short for him. We have replaced receivers before for water or they break for what ever reason, but it isn't an issue that we have often enough to worry about it. they are pretty good in overnighting a new one if we needed one. We are currently over a year on the current one, but won't buy a new one until it breaks since it has been going strong over a year.

Over the last 4 years we have had our ups and downs( not a lot but from time to time) with dexcom, but we wouldn't trade the help it has been. even with the hassle it has been a wonderful asset in the fight to keep our son safe. he wears it 24/7 and has for the last 4 years.

[swellman]

Originally Posted by Jaedima

Hmm, just thinking about the back-of-the-arm site some more-- if we put a sensor there and we also need to put the Omnipod there, some of the time we'll have two devices on the same arm. Dexcom recommends putting the sensor >3in away from a pump site. How do you manage this with small kids?

I think you're going to have to go with the abdomen and love handles for the pod. We've been going there since 5 years old and very thin and it works fine.