Hi :)

[JayL86]

Hi!

Where to start...


November 22nd 2023, my 14month old daughter was diagnosed with type 1. Massive shock!

January 7th 2024 (yes, just over 1 month from my daughter!!) I myself was diagnosed with type 1 too. Can anyone here relate? Let me know!

Just seems so crazy we were actually showing symptoms at the same time, I just put my symptoms aside to focus on my daughters who at the time wasn't doing too great. So, day we go home from a week's stay in hospital, I booked a doctors appointment and after a wait for blood tests, was diagnosed.

Overall it's been a crazy few weeks trying to adjust. Found some great info here so thought I better join and introduce myself and hopefully be able to give advice to others in the future.

Worth mentioning my mum is type 1 and was diagnosed 50 years ago. So we have some fun conversations of how much things have changed and improved. Very grateful for the tech and medical advancements on offer today, especially for my daughter.

My daughter has a Dexcom G6 and is booked in to be fitted with an ypsopump on the 20th Feb - can't wait! We've not had the best of experience with the G6. Signal loss and wild readings 3 on the G6 vs 18 on the BCM! We are trying an underpatch when we next change the sensor.

I have the freestyle libra 2. No sign of a pump, been told up to a 5 year wait for it to be rolled out?! Any advice here would be great!

If anyone can relate to my experience, please reach out! Also anyone with your children, any tips or advice would be great.

Wishing you all and your family members the best of health!

 

[Tdm]

I think that the general trend is for pumps to be more available, so you may find it ends up being less than 5 years.
Were the iffy dexcom readings at night? All cgms can get 'compression lows' if they are leaned on for an extended period/ slept on. As an adult you learn not to do that, can't advise re how to stop with young childen.
As for signal loss, are you using a phone or a reader? Have have g6 and i have no issues with signal loss unless i go like 20ft plus from the phone. Have you contacted the helpline?

 

[JayL86]

I think that the general trend is for pumps to be more available, so you may find it ends up being less than 5 years.
Were the iffy dexcom readings at night? All cgms can get 'compression lows' if they are leaned on for an extended period/ slept on. As an adult you learn not to do that, can't advise re how to stop with young childen.
As for signal loss, are you using a phone or a reader? Have have g6 and i have no issues with signal loss unless i go like 20ft plus from the phone. Have you contacted the helpline?

Thanks for the reply Tdm!

Yes we do get some at night and did read about compressions lows. But we have had it happen during the day. For example say-monday it was showing way off and constant signal loss, so we had to change the sensor as the little one was due at nursery the next day and they are a little nervous at the minute adjusting, which I fully understand.

We are using a phone and always keptwithin a few meters. Since the new sensor was applied on Monday evening it's been great. But we find after 3 days things do downhill. Hospital have advised an underpatch which we will try when we next change the sensor.

Worth mentioning I'm a Software Tester by trade so I have an almost obsession with understanding exactly how these things operate so keep the suggestions coming please !

 

[Tdm]

Nothing else really i can suggest re dexcom...i have g6 and alls ok, no signal loss etc, and it doesn't seem to be a one off. Sometimes a cgm does not suit someones body chemistry...not sure how the libre works with pimps but there are other cgms if dexcom.
I take it its not working loose? It may find it harder to stick to a little one, who are smaller with less flat bits. Have you tried applying to other sights in case they work better? I used back arms but other places may be better on a child

 

[Saoirse]

Hi - the key thing is bluetooth connectivity. Some phones have relatively weak bluetooth (eg older Samsungs - I had to swap an A13 for an S phone due to this issue) and this can cause loss of connectivity. If you are going to be looping, it's really important that you have a phone with good bluetooth connection. I use Dex6 and find it generally very accurate, unless in a steep rise/fall and that it doesn't suffer compression lows in the same way libre can, but different systems can suit different people

 

[JayL86]

Nothing else really i can suggest re dexcom...i have g6 and alls ok, no signal loss etc, and it doesn't seem to be a one off. Sometimes a cgm does not suit someones body chemistry...not sure how the libre works with pimps but there are other cgms if dexcom.
I take it its not working loose? It may find it harder to stick to a little one, who are smaller with less flat bits. Have you tried applying to other sights in case they work better? I used back arms but other places may be better on a child

To be honest it sticks to her really well and has never come loose. We have tried legs and arms. I think the next step is an underpatch.

Apologies... we get 'sensor error' not a lost connection (blaming it on brain fog!)

 

[JayL86]

Hi - the key thing is bluetooth connectivity. Some phones have relatively weak bluetooth (eg older Samsungs - I had to swap an A13 for an S phone due to this issue) and this can cause loss of connectivity. If you are going to be looping, it's really important that you have a phone with good bluetooth connection. I use Dex6 and find it generally very accurate, unless in a steep rise/fall and that it doesn't suffer compression lows in the same way libre can, but different systems can suit different people

Thanks for the reply 🙂

I bought her an Samsung A34, so a pretty decent phone, should handle the pump and dexcom quite fine. I have to apologise we get sensor error a lot, not a lost connection. Apologies!

 

[Tdm]

I don't think i have ever had sensor error with my g6, so not a general g6 thing you should expect.

I did get it with libre, which didn't suite my body at all.
Maybe its just not working with your childs body chemistry?

 

[JayL86]

I don't think i have ever had sensor error with my g6, so not a general g6 thing you should expect.

I did get it with libre, which didn't suite my body at all.
Maybe its just not working with your childs body chemistry?

The consultant did mention about the Libra 3 so that's a possibility. We have just over a month to get it right before the pump is fitted. Issues aside, can't wait for the pump!

 

[Tdm]

Yes, it may be worth trying libre 3...its smaller, thinner, and lasts longer than dexcom g6, which are going to be useful attributes for a child also its in one peice so less fiddly. Also i think its supposed to be the most accurate of all the cgms so far.

 

[JayL86]

Wow that's amazing. Her consultant seemed quite open to trying a different CGM and mentioned the libra 3. Just checked some videos and it so much smaller than the 2. I have the two and find it pretty accurate so far (4 days in). Thanks again for for the help and advice!

 

[helli]

Also i think its supposed to be the most accurate of all the cgms so far.

Accuracy seems to be a personal thing.
Just because most people find a CGM accurate or inaccurate, I would recommend trying them out for yourself before committing, if possible.
I have had a near argument with a Dexcom zealot when I mentioned that I found Libre 2 far far more accurate for me than the G6. And this was not just one potentially dodgy sensor - I think I had three G6 sensors. I accept it maybe better for many people but not all.

 

[Tdm]

Just going from clinical trials, which found libre3 better (just) than dex 7.
But i agree the important thing is what works bedt for the wearer.

 

[Proud to be erratic]

The consultant did mention about the Libra 3 so that's a possibility. We have just over a month to get it right before the pump is fitted. Issues aside, can't wait for the pump!

Very few of us know much about Libre 3; the Hospital Team will know a bit more. But Libre 3 has some advantages over G6 that I'm aware of:

it is smaller than the G6 which would makes sense for a 14 month old child;​

libre 3 lasts 14 days rather than 10 days for the G6;​

libre 3 sensor start up time is less than G6, which needs 2 hrs to start;​

and libre 3 is an all-in-one unit, ie a combined sensor and transmitter - whereas the G6 is made up of a 10 day sensor and 90 day transmitter, so there is a certain amount of "faff" every 10 days in transferring the transmitter from the old sensor to the new sensor.​

​

Some Libre disadvantages are that:

(I think) Libre 3 can not be calibrated, whereas G6 can be calibrated. Is this correct??​

Abbott are good at replacing troublesome sensors but are slow, whereas Dexcom are also good, but very quick. However it is possible that Libre 3 might come direct to you through a Hospital initiated contract and if so you might get a 3 months supply at a time, so your vulnerability in being without replacement sensors is reduced. G6 will come from a Hospital contract in 3 month batches, but possibly a reserve 90 day transmitter should be held.​

I think (also) that Abbott are simply not providing a Reader in UK for libre 3 ( there is one in Germany) - the interface is solely through an app on a phone. So when that tech glitches you are temporarily snookered! But G6 has a Receiver (equivalent to the Libre 2 Reader) and in my opinion everyone would be wise to have the belt and braces solution of phone app and a Reader/Receiver. There are too many instances of phone or app upgrades failing and causing distress and unnecessary angst.​

​

Apologies, meant to post these jottings yesterday.

 

[everydayupsanddowns]

Welcome to the forum @JayL86

Glad you have found us!

Sorry to hear about the double-diagnosis ‘fun’ your family bas been going through. We have a few parent-and-child combos over the years including @stephknits (though Steph hasn’t been on the forum for a while. There are also families like @Bronco Billy where 2 siblings were diagnosed in fairly quick succession. T1 can run in families for sure!

Which sites are you using for the G6? With sensors failing early, and with repeated ‘sensor errors’ I wonder if the sensor itself is getting knocked or moved a bit during wear. This can dislodge the sensor filament a little, and can cause the flow of data from the interstitial fluid to behave unexpectedly so that the software has to take a 10 minute (or 3 hour!) break to settle itself again.

Not sure if there is much room on such a little one to find a place that doesn’t bend/stretch much, and is also out of the way of getting knocked.

The smaller form factor of Libre3 may help in that regard?