Today was a rough day. I want to cry and I can’t seem to let it out. Dropped to 39 while playing soccer. Another sensor error for my son after the low. The dexcom couldn’t catch us with his readings. lots of crying when removing a two day old sensor and lots of crying after placing a new one for him. Then lots of crying when he realizes he had a lot of things hooked on him. He kept saying “I just want it all off, I don’t want to do this anymore.” I just told him to cry and let it out that it was ok to cry. I’m numb. Im sick to my stomach. It’s hard holding in all your emotions for your little ones. It tears you up inside.
@Cca1502, Oh my goodness…that was a tough day for your and your boy. Did you call and report what happened, so, they’ll send replacement? I do that now with Medtronic sensors and also did it with my former CGM of Dexcom. They both have been very cooperative.
Were you able to check BG by finger stick? Did that indicate 39 BG? I ask, because, back when I had Dexcom 5, I would regularly get false lows. It was not unusual for me to be awakened with CGM saying that I was low, even down to 50, but, finger stick said 90-100! It was off by 100 points at times! But, I hear that Dexcom G6 is much more accurate, so, maybe, that wasn’t the issue with your son.
It’s good you encourage your son to express his feelings. It does get frustrating at times. I don’t have a child with TI, but, I bet the parents who do will have lots of info that can help you. Bless you for supporting your son. I hope you can get the chance to just let it out too.
Ohhhhhhhhhhhhh Christine @Cca1502, I hear you and feel for you - and of course for your son. No, you couldn’t cry because you needed, wanted, to be there for your son as caregiver, medic and most especially loving mother.
The important thing when you saw him at 39 is to give him the really fast-acting carb you always have at hand, and then give him something more substantial to eat - even a big cookie. Once you see him returning to his-old-self, do a finger-stick. Keep in mind that the finger-stick will be higher than his Dexcom sensor - the interstitial glucose [CGM] reading will always lag behind the blood reading both when increasing and decreasing.
Today may be really difficult for your son - his BGL during recovery could most likely be in “rebound” [a term doctors who do not have diabetes disparage]. I don’t recall your son’s age, but one thing you can tell him regarding diabetes management that no matter how hard we try it is impossible to be 100% perfect. Our bodies are not calibrated machines.
Regarding the Dexcom - it doesn’t read any values below 40 mg/dl and during rapid change in BGL will lag behind blood glucose readings. The sensor he had in him may have been okay and would provide more accurate readings [as long as it isn’t dislodged] than a new sensor - during the first 24 hours sensors may provide readings that are ‘a bit off’ while they adjust themselves to the body.
Thank you Dennis. Yes that’s exactly what I did was give him the juice box right away. Then followed with a finger prick and he went up fast and continued playing soccer while I sat in fear. I can’t let this take his fun away.
He’s doing better today still in pain from the new dexcom we placed last night. I think we may have gotten a nerve but hard to tell since he always has pain for the first day or two.
I’m also doing better just worried. He started a pump Sunday and since then he seems to fall a lot. We still need to make adjustments to the pump to get it right for him since it’s new. We have an appointment tomorrow so hoping they’ll help with adjustments.
Hi @HighHopes yes I did call dexcom. They are sending us a replacement for this one. I did do a finger stick but after I treated the low. I was panicked. For the most part it seems to be accurate but just behind by 15 minutes or so. He’s doing better today. For the most part he has been accepting of his new life but he has his days where he gets emotional. I always tell him to cry it out and to tell me how he feels so he can feel better. Thanks for your advise.
Christine @Cca1502, in you “panic”, your head stayed on straight and you brought him through. I’m really happy that he could get right back in the game.
You are amazing - you did better for him than I have done for myself - yes, I have the knowledge but in my panic I forget - or used to but getting better now. I remember my fife telling me “you are low, eat something” back in the days before home blood sugar checking and I’d go into denial.
You have a lot going on and it sounds overwhelming, but, I’d try to keep in mind that things will become more familiar and doable over time.
You say that your son’s Dexcom CGM is painful for him the first couple of days. I would explore that with his doctor and Dexcom. I’ve never had that or heard of it. Maybe, a little discomfort for a half hour or so, but, no more. Maybe, I new location could help? I wish you all the best moving forward.
Would your son ( what age?) prefer finger sticks? That would be one way to get rid of a lot of the stuff that troubles him. Despite urging from everyone to use technology I still depend on the available 10 test strips / day. Some days I use up more — related to driving, exercise, extra food — some days less, because I am pretty good at knowing what my glucose would read. Despite this I occasionally get an erroneous extreme high — and two times now, an extreme low ( in the 20’s with a caution to get emergency aid.) I have learned the hard way to immediately retest, having washed my hands and using another finger. My biggest mistake has been to treat the low too well, which would lead to a high and the roller coaster effect . Treating the high with insulin is very iffy and I do it extremely carefully, taking into consideration a lot of variables. I do not recommend this, although my endocrinologist urged me to do this, and it took many long years to get comfortable with this.
You will overcome your problems, time and patience will do it. Wishing you hope and peace.
m ( a 12 year T1D veteran)
Oh my oh my!! Yep, trying to handle this tough disease well takes a toll ON EVERYONE. There are times i’ve wanted it all gone and know that’s just not going to happen. I’m the T1 (now 39 years), with no children. It may help to communicate with your son that you share his frustration because your worry worry worry while gets angry angry angry. You may think he completely gets that relationship, but I would not assume. You did incredibly, INCREDIBLY well. So did your son. You stayed clear headed. treated the low. tested despite the Dex. . . which, after all, takes 10, 15, 20 minutes or MORE before the lows catch up to the sensor and sounds the alarm. That part is all trial by error over time. Another responder mentioned the need to still do finger sticks 10 times daily. I do. it makes a big difference, and may do the same for you, hoping your insurance accommodates. I have seen only great responses here - i hope they help. Live well.
Crying can be a by product of that low sugar ! Lows can make you cry for no reason
I have had discomfort from the Dexcom sensors many times. They are metallic, and if you have no fatty tissue, I think the metal prong may go into muscle tissue beneath the skin. The same thing happens with the steel insulin pump needles I use. Once a Dexcom sensor has become painful for me, it tends to stay that way until I insert the next one.
Im so sorry you and him are experiencing this. I use a Dexcom as well (started it about 4 months ago) and find that certain areas on my stomach hurt pretty bad when I place it there too. I think for people that are more lean then it can hurt a bit more so if he doesn’t have much fat on his stomach then it may be hitting a muscle or something. Ive tried putting them on my side and on the backs of my arms too and that seems to help a bit. It will get better, good luck !
A little bit of pain and occasional erratic readings are one of the “downfalls” of not having more weight and a bit of fat to accommodate these devices; the cardiologist I saw last week said he would not mind seeing another 10 pounds on my body.
I’ve noticed that when I roll onto the G5 when sleeping, I can get a “low glucose” alert which often is false; it is caused by the compression of the CGM sensor against a firm structure - with me, it is when I’ve placed the sensor too close to my rib-cage.
I’ve only had luck with CGM sensor on my torso once with my Medtronic. It doesn’t hurt, but, just doesn’t work well there for me. Back when I had Dexcom, that’s the only place I wore it with no trouble. Padding is not an issue for me. lol Though, my arms are fairly thin.
I know someone who wears hers on her upper thigh. I tried it once, but, it was too easy to dislodge it when pulling clothes over it in the bathroom. I can’t adjust to that. Plus, not sure it’s recommended for that location. It felt fine there though.
I’m so sorry you had such a day. I started crying just reading your post. It’s hard. It’s that hard. I’m going through a tough time with my 9 year old t1d daughter. What helps her and truly helps me is getting play dates with other kids with t1d. I’m falling apart when she goes through days like you just described. It makes a huge difference in her confidence and her level of happiness after she interacts and plays with children with same “devices “ on their little bodies. Emma has a Dexcom and an omnipod. It’s a lot to handle. But if you can, I think it would benefit your son finding a “diabestie”.