My 7 year old granddaughter was fitted with a Dexcom 6 yesterday. We all had high hopes for it giving her and her parents more freedom, without the regular injections etc. However, as soon as it was fitted, the alerts were beeping and her parents spent the rest of the day studying the manual and trying to understand why one alert said there was a blockage, when on checking, there wasn’t. Then my granddaughter dipped to a Low, then up to over 20, with her parents feeling helpless to regulate it. The insulin is different to the Libre insulin. I just wondered if anyone else has had this problem. The really disappointing thing is that she and her parents feel they don’t have any confidence in it now, and even if there was an explanation, I think they are too unnerved to continue with it. In the end, to get through the night, they disconnected it, waited until they saw there was no residual insulin in her body and continued with their Libre system. I’d be grateful to hear anything on this.
Dexcom disappointment: My 7 year old... - iDEAL Diabetes
Dexcom disappointment
Early days surely?
Certainly one instinctively feels more time should be given, but when the insulin levels of your young daughter are shooting up and then plummeting, and incorrect ‘blockage’ alerts keep beeping and you have to keep correcting the dose to no effect, a parent is too nervous to carry on with this through the night. Even if this was just an early ‘blip’ , the parents, and indeed the child just have no confidence in the device/system, because the fear is that this could happen again at any time. They say they would rather continue to check levels several times in the night and make adjustments accordingly. At least they have control over things, instead of relying totally on technology.
Awww poor little girl! The dexcom has changed my life. All I can say is keep trying with it cos the first couple weeks is tough. Lots to learn and I almost gave up after the first week as well! I was in tears thinking it wasn't worth it. But as you get used to it and learn the do's and don'ts it works like a charm. Don't get me wrong there are days I still have to do finger sticks to check it but on the main I rarely do anymore!
Unfortunately regular injections of insulin will never go away with having type 1 diabetes. The only thing that replaces injections is a pump. But again that's has alot of learning and trial and error as well!
Another thing that may help is I always over treated a hypo (when going low) and then swing up to 20 as well. But after many years learnt that only 20g fast acting sugar (half bottle lucozade) and then waiting 15 mins rechecking blood sugar and then eating 15 g slow carbohydrates. I was always drinking the whole locozade and scoffing as many cereal bars as possible!! The feeling of shaking makes me want to fix it quick but dose take that 15 minutes to have the full effect.
Hope this helps
Thanks for your detailed reply. For now, the family are content with using injections, but they still have the Dexcom sensor which connects to my granddaughters phone, and the parents get alerts on their phones too, and can check her insulin levels remotely. This has allowed a lot of freedom, and everyone involved feels comfortable with this system. We think perhaps the system is better for adults, because the parents would be continually worried about the insulin levels when they were not with their daughter. The system has to be more reliable than it is for now, for them to feel comfortable leaving their daughter’s health to its temperamental algorithm. Thanks again.
I'm a little confused. If she's having injections (not using a pump) then there wouldn't be any algorithms involved. I think algorithms only apply to a pump and and loop system that automatically delivers insulin.
Also think you mean the parents would be worried about blood glucose levels rather than insulin levels. Type 1 diabetics don't produce any insulin.😉
My granddaughter had the pump fitted and it was this that let them down. Having returned to using the injections, they feel more confident. It was the pump algorithms I was referring to. Sorry, reading my post again, I can see I followed on from injections to algorithms ! It was a while ago this all happened and now they have settled to using injections again instead of the pump - they were nervous wrecks after about 12 hours of using it ! I much appreciate your input.
Ahh ok ..yes that makes sense. Do think the algorithm takes awhile to adjust to the body. Aww... hopefully they can get some support from a diabetes nurse if she ever wants to try it again. My nurse was brilliant following up. Big thing to get used to pumps 🙃
Ironically, the diabetic nurse has type 1 diabetes too. She is lovely, and a nice way with her for dealing with a child, but she is hopeless when it comes to updates. She has a pump herself, and when my son took his daughter back to her to say they weren’t happy with the pump, she said “ oh yes, mine plays up sometimes but it sorts itself out in time”, which is ok for an adult, but for a child at school, or visiting friends it is not worth the stress. I am very grateful for your responses and support.
Wow...that's tough just to let a child figure it out. Now I can see why as you say not worth the stress! If she ever decides to try again I hope she gets some more support 🤗 I only went the pump route after I decided to have a couple kids and needed to get my blood sugars alot better. So alot older than my 11 years old when I was diagnosed 😌 But as I said it was a game changer for me so glad I did and had the support thru my nurse. Diabetes.co.uk has alot of forums and ones specified for pump users, type 1, etc. that were helpful for me too xx
hey! Yes, most G6 users know for a fact, it doesn’t make it better. There are pressure lows, which are lows that are inaccurate on the dexcom, due to pressure on the site. Also, was the blockage on the G6?? If it was a pump, the blockages get very annoying, and it will happen. Don’t overdose. There probably was air bubbles blocking it. It has happened before. Don’t worry, it will get better!
Thanks for replying. The parents gave up on it as it was scary for them. With their old regime for their daughter, they knew how it worked and what do do in any circumstance. If this had happened after they had got used to it - or if it was happening to an adult - they would have had thd conference to ride it out, but for a 7 year old girl, not knowing what her insulin was doing was far too frightening. They have returned to what they were doing before, but luckily, they can still have the Dexcom sensors which alert them on their own phones if there is s high or low, and they can track her levels in real time. Much better than having to scan her old sensor all the time. So some good came out of it. Thanks again for your response.
Annie.
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