I read about Dexcom on my own and found out our insurance covers it so I am going to request it for my 6 year old at our second clinic appt. next week. I was just curious:
1. For those of you whose kids have a CGM, how much added peace of mind has it given you? Right now, I feel so stressed and worried all the time, about night lows, school, and even just when we're at home during the day. Have the alarms and added information about whether a level is going up or down given you any more peace of mind?
2. Do you have any advice or tips for a beginner on how to troubleshoot the little issues that might come up in the first few weeks of using one, such as applying the sensor, how a child can best carry around the transmitter, minimizing skin irritation, etc.
My 11 year old, diagnosed at 8, has been using the Dexcom for at least 2 years now. I cannot tell you how much piece of mind it brings me. I can actually sleep through the night! When she plays sports, swims, has friends over, etc I can just look at the receiver and know what's going on with her blood sugar. I know if I need to pull her from an activity to have her test, give her a snack or bolus her. And best of all I know when I DON'T have to do those things.
It also allows us to have much tighter control through the night. Without the Dexcom I wouldn't put her to bed under 180, with it I can comfortably put her to bed when she's at an even 120 or even lower.
The alarms wakes me but they don't wake her so I can get up and treat the high or low without her even knowing it. The benefits go on and on. I'm a nervous wreck when she takes a "Dexy break".
As far as issues go, we haven't had many. The sensors don't stay on very well so we battle with that the most. My daughter carries her transmitter and pump and cell phone in a flip belt but they don't make kids sizes so that won't work for you for a while (the xs is almost too big for her). When she first starting using a pump she carried it in a spy belt. They work really well.
You can set the low alarm to 100 so it will alert you before they get too low but beware that there is a delay with the dexcom so if they are dropping quickly it may not alert you before they are low. Luckily my daughter feels her lows so that's not a problem during the day and the quick drops usually don't happen at night since she doesn't normally have a lot of insulin on board at bed time. It will take a few months to understand how it works with your kiddo and for you to trust it but once you do it will be hard to go back (at least it is for me).
We have a prescription for one, but have not followed through yet. I have been told by multiple people that Dexcom is the only way to go for the CGM. It provides the most helpful information.
I am not fearful of the CGM as I am sure it is very similar to the pump (6yr old son started in August) in terms of adjustment. The hospital or manufacturer usually provides a class on getting started. And in our case, with the pump, Seattle Children's Hopsital has been available by email and or phone to help answer any questions. Application has tricky at times due to the location of the site - my son doesn't like the stomach area, and prefers the hiney. To resolve this issue we not have numbing cream - which has made every difference for him and us emotionally. As far as carrying the CGM, my son wears a SPI Belt to carry his pump and it is very discreet - this might be an option for you daughter.
Rest assured that a CGM will provide information that will assist with your daughters diabetes care. These changes are hard, but soooooo beneficial for our kiddos.
We have been using a Dexcom for 3.5 years now. We started when my daughter was 2 and she doesn't go to school so I can't speak to those aspects.
I cannot begin to describe the peace of mind that it gives us. We would never ever be without it. I sleep soundly at night with the receiver right next to my head. It alarms for impending lows often and I am constantly grateful that because of the Dexcom I catch all of those. We feel much more freedom in eating anything and doing activities because we can keep a close eye on things and react quickly. It has saved us when we found ourselves stranded somewhere without test strips and when we were battling major illnesses. It is just a wonderful, wonderful tool.
My number 1 tip for getting started is be patient. It's a lot to take in at first and it takes a few weeks to get acclimated and start to figure out what to do with the information. It can be pretty stressful. Hang in there. You'll get over the hump and the constant data flow will become second nature.
I'm not sure if you are getting help with your first sensor insertion and startup. We didn't have any help but the Dexcom materials and the internet were sufficient. Just make sure to pinch up. We have the most success with back of the arms placement.
Also be aware that you can get a numbing cream rx from your endo when you go in and that may help smooth the transition.
We have not had trouble with skin irritation. We do get the adhesive starting to peel off after a few days, and I just cut a hole in a piece of IV 3000 and put that over the top.
Love love love our Dexcom! I honestly wish they sent us home from the hospital with one. So much more peace of mind, so much more knowledge of what is going on all the time. It has been a lifesaver for my five year old, he was diagnosed at 4 and we got it six months after diagnosis. We have problems with it sticking too, but have found that skin tac and opsite flexifix tape are invaluable. I buy a big roll of the tape on amazon and tape all around the white adhesive as soon as the sensor is inserted. The sensor is only FDA approved for the stomach, but we get horrible readings there and can't get it to stay on so we use it on his arms and it is wonderful - great being able to see the numbers and see how fast he is going up or down so I can fix a problem before it happens. He also takes the receiver to pre-school and it has been a wonderful help for his teachers to know if he is having a problem because he is hyper and hypo unaware. We get two weeks out of each sensor, which is wonderful because those things aren't cheap. It has caught numerous lows time after time. We carry ours in a Tallygear carrier made just for the Dex - it is perfect, you can get it with different patterns and it has a clear window front so you can see what is going on all the time. It comes with a belt strap, a neck strap and a clip that you can use to clip it to your purse, or pants or whatever. I clip it to my son's pants when I am not carrying it. Just go to Tallygear.com they are great. Good luck!
Thanks so much, I had high expectations for it and I'm so glad to know that others love it! I want it now!
Has anyone tried the Talleygear tummytote? It looks as if it has velcro - I am trying to decide what would best fit on her pants, the tummytote or a clip. At night do you just put it in a case on the nightstand, or leave it in its carrier/belt?
Is it easy to see the screen through the Spibelt?
Am writing down all the tips for the creams, tapes, etc. I also read about using Johnson and Johnson tough pads and Unisolve adhesive remover.
We tried the tummietote and it was okay, but really bulky. I really think the smaller case is the best option. I clip it to his pants or his spibelt if I don't want to carry it. It is definitely easier to use it in the tallygear case than the spibelt - I wouldn't be able to see it in the spibelt and I think it would drive me crazy constantly taking it out.
At night I have it on my nightstand, it works really well. I just wake up and check him whenever it alarms. We leave it in the tallygear case all the time, it I think it adds a little bit of protection for it just in case it is dropped or anything like that. We use the johnson and Johnson tough pads and they are great, but I would only get them if your child has an allergy to the adhesive, otherwise you will be fine. Mine was great for the first three months then started to show an allergic reaction.
