Hi All, I've been following posts for a while now about the Dexcom. We would welcome feedback on our situation, as I'm hearing both positive and negatives about the reliability of CGM's. Our daughter "Mary" has just turned 4 (been dx since 15 mos) and is on the Animas Ping. She has ups and downs daily, and we constantly feel we are chasing a moving target. We are considering the Dexcom for a variety of reasons including 1. she just started pre-school, and it would help their anxiety 2. to see how food impacts her 3. illness...the stomach flu is our constant fear and she visits the ER when this happens...would be nice to know the trend 4. We might be able to sleep (ok, slightly) more soundly...we check her 2x per night 5. She's starting organized dance/sports. The drawbacks are: another needle, inconsistent readings, and our Endo. says research has shown it doesn't decrease A1C in little ones, b/c the tendency is to over-correct. So, if you'd like to give us some feedback, please do. We're all in this together, right?
Hi, my son is 12 and has had the Dexcom since he was 9. It is my favorite diabetes management tool and I can't imagine life without it. I feel like we are blind if he doesn't have it on because I can't see what's happening to him.
The two "drawbacks" to me aren't really drawbacks. No - it's not always accurate with the number it has on the screen (although surprisingly more accurate than I expected.) But that's not why he wears it. I want the trends - they are so much more important to me than the numbers. If my son is 100 and headed straight down, it's not that different than 120 headed straight down or 80 headed straight down. He's going down and I need to stop it. However, those three numbers without knowledge of a trend don't give me enough information! If he's 100, 120 or 80 headed straight up I'm going to react differently. If I check his bg and it's 100 - and I don't know which way he's going, I don't know what to do. And as far as trends go - it is VERY accurate. Which is so helpful for sports and school situations.
So then for the A1c - I didn't get the Dexcom to make his A1c better. He's been in the 7's since diagnosis, and although in my dream world he would be in the 6's, it's not worth the risk for us right now. I got the Dexcom so he could have more freedom at school, more freedom for sports, and so that I could see trends and make adjustments to better manage him overall - not on a daily basis. THAT is worth a lot to me, and to him. Endos seem to forget that it's not all about the A1c - that's only one number in my son's diabetes management. I do the best I can but I ALSO want him to live as normal as a life as possible and tools that help to enable that are worth it to me and him.
Yes, his teachers like that he has it on. Yes we can see that cheerios are evil. Yes, when my son had the stomach flu it was SO helpful. Yes, it alarms in the night and I can sleep better (we had to put the baby monitor next to it though because it's not that loud.)
The needle isn't so bad - I did it myself to try it. We use EMLA cream to put it on my son, but I think that's mostly psychological. And it's once every week (or two weeks, but I didn't say that) instead of every 2-3 days for the pump.
We did have to fight the insurance because they said under age ? it wasn't any benefit. But there is at least one good study by JDRF proving that there is value in it. I could dig it up if you needed it.
I would definitely recommend a Dexcom for your daughter. Yes, it is easy to over correct, but as you get more practice you'll learn to wait and see a bit more and not over correct. In fact, we over correct MUCH less often now with the Dex than before. At least if you do, you see the result on the Dex and learn from it. Without the Dex, you don't know until you retest. In fact, we are very often able to prevent lows by giving a small complex carb snack when we see our daughter's BG headed down in the Dex. It has also been invaluable for adjusting basal rates as well as timing for boluses. We started with the Dex before the pump and SO glad we did. Also, remember that A1c isn't everything. If you can smooth out the roller coaster, it's very good for her health even if her average BG doesn't go down.
Oh, yes - the trend arrows! You'll treat a BG of 75 steady much differently than 75 going down fast - HUGE improvement.
My daughter is 7 and we tried the Dexcom. I really wanted to like it, but it ended up being more of a hassle and I ended up spending MORE time managing diabetes because of it. Here's my list of Pros/Cons:
Pros: 1. It was usually fairly accurate at night so I was able to sleep a little better 2. I did like the trend arrow 3. I had no problem having it covered under my insurance plan
Cons: 1. It was , for us, innacurate during the day 2. Because of the high rate of innacuracy (I'm talking > 20%) it caused: - More finger pokes - More time spent out of the classroom confirming the high/low alerts (low was set at 80 and high was set at 260) - More of my time comparing every finger poke result versus Dex reading 3. While we only changed it out Q10d, it was 1 more device on her and 1 more device I had to remind her to wear. On a DAILY basis I found myself asking her: WHERE's Dex? Are you wearing your Spibelt? Where did you put Dex? Everyone help look for Dex. 4. I found myself becomign obsessive: what does Dex say? I spent way more time thinking/managing diabetes post Dex 5. My kiddo developed a nasty rash to the adhesive. Worse than the omnipod adhesive as far as rashes go
So, all said and done, we took it off of her. Will I put it on her occassionally when I'm having difficulties seeing overnight trends/setting basal rates? Yes. Will I pop it on her if she comes down with the flu? Yes, probably. But as far as wearing it 24/7, it's just not for us.
As long as your insurance covers it, there's no harm in getting it and trying it.
Our son was diagnosed at 14 months, and has been on the Dexcom and Omnipod since he was 18 months old.
Everything you have mentioned as pros and everything people below have mentioned as cons are all true. However, I think you have to take into account how this specifically helps a four year old because of the age, maturity, and natural hypo unawareness of a very small child. So I will summarize: PROS - 1. You will protect your child from dangerous lows. Your child's brain is growing until they hit 5, and any seizure before that actually can potentially damage their brain. You will avoid that. 2. Between 3-6 a child is going through one of their bigger growth spurts, and you will be notified of the highs. Extended highs can actually stunt growth in a small child 3. It's not about reducing the A1C at that age, it's about protecting from (1) and (2). 4. Taking care of a smaller child is hard enough - I'm about to lose it over this potty training with a pump thing - when you add diabetes the schools and babysitters and grandmas *really* don't want to take care of it. My son has been kicked out of camps, etc and the Dex allows me to fight for him. Dexcom helps immensely in getting other people to help your small child. 5. You will be more confident in your dosing and food. 6. You will sleep better at night. 7. You will do less finger pricks.
CONS - 1. It is another needle and a device. However, my son minds the needle prick on the Dex less than the needle prick on the Omnipod. 2. The adhesive is more irritating, because it has to last longer. We put a J&J tough pad under every sensor, and that has solved our problems. 3. The Dex can be stressful - especially in the first few weeks - because you realize "that's what the BG was doing?!?" 4. The Dex can make diabetes management much more intense, because you are always getting a BG. A BG that potentially always has to be addressed. 5. Sometimes you have to do more finger sticks when the sensor is wonky, especially in the first 24 hours when it is naturally off. We read the book "Beyond Fingersticks" which talks about CGMs, and how it's important to calibrate much less than you think and only at certain stable times. 6. It can keep you up more at night with recurring lows and highs. There are some nights it goes off every hour and I don't get any sleep. However, we have accepted this tradeoff since we know he needs help. Most of the time though, it lets us sleep and we haven't done a night BG without a Dex alarm in years.
Yes the Dex can be very off - on a regular basis - but we have always decided some info, while incorrect, is better than no info. You get the hang of it and your kid's BG, and you recognize when it's off.
It is overwhelming, and it's OK not to have it, and there are days I want to throw the Dex out the window and run it over with my car but diabetes never sleeps and neither does Dex. If you want to take it on it can really help you (and others) manage your small child's diabetes.
Although I am not a child and do not care for one, I wrote this on another thread earlier today. I thought it might help to have this point of view. <>
I have been T2 for 25 years, using a Ping Pump for 4 years, and Dexcom for 3 years.
Here is what I have learned:
1) Even in a lab, if a specimen of blood is divided and tested twice, the same machine will give two different numbers. They will be within ± say 2%.
2) Lifescan, not the new Verio IQ, has a ±10% for tests near 100mg/dL, meaning 90-110.
3) Dexcom is ±15%. Remember it is for TRENDS, NOT real numbers.
4) Every time you dose insulin, do a finger stick - DO NOT use the CGM value. This is for SAFETY! Testing is especially true if you are a)very brittle, b) stressed -good or bad, c) have a change in activity, or d) doing anything out of your routine.
5) I have had 5 surgeries in the past 4 years. With my pump and CGM, the recovery and rehab have reinforced every one of these points.
6) Remember, a meter and a CGM are tools. You must use them correctly to get the best results.
7) Understanding how a CGM works helps wrap your head around all of this. There are several parts for the Dexcom. a) the wire acts like a battery - more glucose = more current. b) the transmitter reports the current. c) The receiver analyses and evaluates the current to display a prediction of mg/dL and the trends it is seeing. Look at the formula in the Dexcom book to learn this specifically.
8) Several posts here and on other D sites have indicated failure to use according to manufacturer's instructions have lead insurance companies NOT to pay for "problems" if the item is not used as ordered. The situation was about a Dexcom wire breaking under the skin of the thigh, surgical recovery was required. Insurance would not pay because sensor was to be used on the abdomen, not the thigh. Be careful about the advice you follow to go away from manufacturer's FDA approved instructions - insurance may not pay for problems.
Best wishes - and be a safe user of your tools.
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Read Dexcom's marketing about "keeping between the lines". If Mary has eaten the best balanced meal you can prepare for her and you do a finger stick two hours later and get a high number, is the BG still going up, peaked, or on the down slope? This is what a CGM is all about - trends. A CGM also alerts when it thinks the BG is high or more importantly LOW.
My 2¢ worth, correct according to the endo's formula to prevent over correction (I use 9 Sweet Tart® tablets for 15 CHO - they are small and easy to adjust dose.), contact the local Dexcom rep and try to arrange a two week trial, and ask Mary. Children are extremely perceptive.
It is one of those try it to really know it things. True, it probably won't improve A1C but the value of trends (peace of mind) is surprising. It isn't perfect but certainly worth a look. For me once I get past the initial 12-24 hour breaking in period, I almost always can trust readings for 9-10 days until it starts flaking out.
This isn't an answer to your question, but I've been wanting to share these feelings for a long time.
I want to thank you, and Natasha, and t3mom, and all of mom's out there giving the best for your Type I children. I was diagnosed 22 months ago at the age of 25. I cry when I read threads like this because I was blessed to go through the first part of my life having not developed the disease yet. I wasn't happy about the diagnosis, but as an adult onset with a science background, time to let the harsh reality to sink in, and a mother who is an oncology nurse, the adjustment has been relatively easy.
You are the strongest, most amazing mothers out there. I wouldn't be the person I am today with the amazing support from my mom, and the call of addressing my health requirements at every moment of the day. Just have the comfort knowing that your tireless efforts in helping glycemic control now are not only going to keep your loved diabetics free or disease related complications, but also mold them into stronger individuals that will find a strength uncommon to most. We are all in this together...and we will continue to stay strong on insulin.
