Advice from T1D Parents of Under 2s

[T1DToddlerMum]

Hello, this is my first time posting. I've recently found this forum and looking for advice from parents specifically of T1 children under two years old. My child was diagnosed at 13 months (summer last year, now 18 months), is using Dexcom G6 and looping with Ypsopump.

Is anyone with a child under two years old hitting the 48 HBA1C target? this feels impossible for us

Is anyone with a child under two years old using Dexcom G6 and experiences continuous issues with it? We have frequent "Sensor Error - wait upto 3 hours" messages. I'm talking multiple times a day - which then throws of the pump looping and results in high BG. We're limited to alternatives because of their age and what can be used to loop with ypsopump

Is anyone managing to sleep?? we are up seeing to high/low/no signal alarms at least twice a night - sometimes up to eight times when Dexcom is really bad

My child is the youngest T1 patient our health board has ever had and advice from them is unreliable at times - my concerns are mostly met with "it'll be easier when theyre older"

feeling deflated today

 

[Saoirse]

Hi, I can’t help with the specifics of looking after such a young child, but I have been using camAPS for early three years. If you have Facebook, please search for CamAPS users. It’s a peer support group (which does have some input from camAPS too), as just generally it’s a really helpful resource. What exact phone are you using to manage the loop please?

 

[SimonP]

Welcome and I'm sorry.

Not very many people actually achieve those numbers (unfortunately), typically reporting is biased towards those who have good results and want to talk about it.

There is data available which gives you a breakdown. I was actually looking for HbA1c percentages just the other day (though not for very young children) so I have that data to hand:

Microsoft Power BI

app.powerbi.com

I don't think there's a dashboard for the latest reporting period, but the numbers are fairly similar, with perhaps couple of percent improvement across the board.

I just did a quick Google and the following data are available for adolescents and young adults, there may well be more in the raw data which can also be downloaded. Happy to have a look if you can find a data source:

Treatment targets - NHS England Digital

The Adolescent and Young Adult Type 1 Diabetes Audit audits diabetes care provision during transfer from paediatric to adult based clinical care. It contains details of care processes, treatment targets, transition of care, DKA admissions and insulin pump usage.

digital.nhs.uk

Scroll down to see this:

 

[T1DToddlerMum]

Hi, I can’t help with the specifics of looking after such a young child, but I have been using camAPS for early three years. If you have Facebook, please search for CamAPS users. It’s a peer support group (which does have some input from camAPS too), as just generally it’s a really helpful resource. What exact phone are you using to manage the loop please?

Hello, it's a Samsung S21 Ultra

 

[Sally71]

Hi there, my daughter was 6 at diagnosis so I can’t help regarding such a young child, however I do want to say don’t get too hung up on getting an hba1c of 48! For the first 4 years of my daughter’s diabetes, we had a basic pump (Accu Chek Combo) and no sensors, so had to do it all with finger pricks; once she was stabilised we managed to keep it fairly steady in the low 50s. For the next 4 years we had another Combo pump plus self-funded Libre 1, knowing what was happening between finger pricks was quite a revelation and very useful, but we still only hit 48 a couple of times and I began to think that getting below that was impossible unless my daughter spent half her life in hypo territory, which also isn’t good for her health. Then she got the T-slim pump plus Dexcom sensors, although didn’t fully go HCL for the first couple of years; initially when she did it was brilliant and got her straight down into the low 40s; things have crept up a bit now, and if it was me I’d be tweaking settings all over the place trying to get it down again. But she’s 18 now and I don’t have anything to do with it any more, and her hospital team are always pleased with her (they see many people with far higher hba1cs, they say she’s always been one of the best controlled) so if they are happy with her in the low 50s again then I guess I should be too! You can’t get it perfect no matter how hard you try, and you need to enjoy life too. Having said that, I don’t have any experience of dealing with it in such a little one, sending many (((hugs))). It does get easier with time though, no matter how old they are, you’ll find what works best for you. Good luck in the meantime 🙂

 

[Saoirse]

Hello, it's a Samsung S21 Ultra

Ok, so it’s quite a new phone - connection issues are often caused by poor Bluetooth connection rather than the dexcom itself. A rock solid Bluetooth connection is essential when looping - If you have not already, I’d suggest googling the phone name and Bluetooth issues and working through the list of suggested things to do to see if it helps. Sorry you’re experiencing this, it must be really frustrating. (For example I have a galaxy s10, so an older phone, but it is only used to run the loop and I rarely have connection issues. This was by accident as ordinarily I’m a Apple user and camAPS doesn’t run on Apple devices but actually I think it’s not a bad arrangement)

 

[trophywench]

Hi - again not a parent but am by now a step great grandma hence do understand almost 100% how and why parents worry about their children, so just one question from me has told you that your infant is aiming for an HbA1c test result of 48?

 

[T1DToddlerMum]

We are told at clinic we should aim for lower and recent information has been given out stating children should aim for 70% in range and 50% in tight range which i just don't know is realistic for such a young child, but maybe it is and we're going wrong somewhere, although trying our best

 

[Sally71]

That is an extremely high expectation! As I said before, pretty difficult to achieve, and I can imagine that it’s harder for such a small child (primary school age was tough enough). There’s no problem in aiming for a good score but you have to be realistic too. You’ll end up burning out with all the effort. When my daughter was first diagnosed I tried too hard to get perfect numbers all the time, and would get very stressed if we had a day of highs that wouldn’t go down and so on. But sometimes these things just happen for no obvious reason. It took me a long time to learn to relax a bit and not stress about every number that was out of range, but I think we were all much happier when I did (and daughter was no less well controlled).
If your clinic is expecting you to keep your child so tightly in range then they should be doing more to help you achieve it. “It’ll be easier when they’re older” isn’t going to help you now and sounds like they can’t be bothered to help you sort it yet, so they should be a bit more understanding when you’re having difficulties too!
I must admit I didn’t know you could use sensors and do looping on a child so small, and it sounds like it’s not ideal. Would it be an option to maybe take the pump out of automatic mode and learn to make the adjustments yourself? At least until they’ve grown a bit more. Just a thought, if it’s a ridiculous idea then please ignore it!
One final thing - my mum has been type 1 since 1967 when there were no home blood testing kits, never mind pumps or sensors, she only had urine sticks and her own sense of how she was feeling to guide her. Got her first blood test kit sometime in the 1980s, which she’s always treated as a bit of a luxury rather than essential, has never wanted pumps or sensors, often gets told off by the GP for having a hba1c in the 70s and doesn’t seem interested in trying to reduce it, and is still here at the grand old age of 80. It’s not all doom and gloom - indeed you should be doing the best you can for your child, but don’t go crazy trying to achieve the impossible. Small steps 🙂

 

[SimonP]

These are the figures from the latest available audit, from the links above, etc.



As you can see, the percentage <48 is quite small. I'd not worry, do as well as you can but don't get too hung up on it - the difference in expectations may simply be due reading from the proverbial hymn sheet without seeing quite how difficult (as demonstrated above) it is to reach these results.

 

[Thebearcametoo]

Hi and welcome. My kid was 8 when diagnosed so I don’t have experience with littler kids but I know our team at Oxford have.

We found when he was younger that it felt like we were continually changing ratios because of growth spurts, developmental spurts etc and I’m sure that is also the case with toddlers.

The Dexcom needs good fluid levels so make sure your little one is drinking plenty and that can help reduce some of the errors with the sensor. It’s difficult on such a little body to get enough squish to put all the devices on. And then the phone needs to be close to be able to get readings so you’re loading up this small body with all this tech.

As for sleep. We have had phases where I was up every night at least once and it still happens sometimes. But also even without the alarms I would wake and check my phone to try and preempt any hypos or whatever. It’s one of the things of being a parent of a diabetic kid, we have interrupted sleep. I promise you it does ease off but he’s nearly 15 now and I still have to get up at least once a week to deal with some issue or other.

What sort of numbers are you getting with hba1c? I think our team aims for under 52. Mostly we’ve managed that and now with looping he’s often much lower but now always.

 

[T1DToddlerMum]

That is an extremely high expectation! As I said before, pretty difficult to achieve, and I can imagine that it’s harder for such a small child (primary school age was tough enough). There’s no problem in aiming for a good score but you have to be realistic too. You’ll end up burning out with all the effort. When my daughter was first diagnosed I tried too hard to get perfect numbers all the time, and would get very stressed if we had a day of highs that wouldn’t go down and so on. But sometimes these things just happen for no obvious reason. It took me a long time to learn to relax a bit and not stress about every number that was out of range, but I think we were all much happier when I did (and daughter was no less well controlled).
If your clinic is expecting you to keep your child so tightly in range then they should be doing more to help you achieve it. “It’ll be easier when they’re older” isn’t going to help you now and sounds like they can’t be bothered to help you sort it yet, so they should be a bit more understanding when you’re having difficulties too!
I must admit I didn’t know you could use sensors and do looping on a child so small, and it sounds like it’s not ideal. Would it be an option to maybe take the pump out of automatic mode and learn to make the adjustments yourself? At least until they’ve grown a bit more. Just a thought, if it’s a ridiculous idea then please ignore it!
One final thing - my mum has been type 1 since 1967 when there were no home blood testing kits, never mind pumps or sensors, she only had urine sticks and her own sense of how she was feeling to guide her. Got her first blood test kit sometime in the 1980s, which she’s always treated as a bit of a luxury rather than essential, has never wanted pumps or sensors, often gets told off by the GP for having a hba1c in the 70s and doesn’t seem interested in trying to reduce it, and is still here at the grand old age of 80. It’s not all doom and gloom - indeed you should be doing the best you can for your child, but don’t go crazy trying to achieve the impossible. Small steps 🙂

Thank you, we started on MDI for a couple of months but we're continually told because of their age and size MDI would never suit them (0.5 units either way was far too strong or nowhere near enough) we were sold the idea of the pump as a game changer and admittedly it is better than MDI but I do feel like it's not as good as anyone had hoped. Particularly when the Dexcom fails so often the pump doesn't really stand a chance when given inaccurate information or no information at times

 

[T1DToddlerMum]

Hi and welcome. My kid was 8 when diagnosed so I don’t have experience with littler kids but I know our team at Oxford have.

We found when he was younger that it felt like we were continually changing ratios because of growth spurts, developmental spurts etc and I’m sure that is also the case with toddlers.

The Dexcom needs good fluid levels so make sure your little one is drinking plenty and that can help reduce some of the errors with the sensor. It’s difficult on such a little body to get enough squish to put all the devices on. And then the phone needs to be close to be able to get readings so you’re loading up this small body with all this tech.

As for sleep. We have had phases where I was up every night at least once and it still happens sometimes. But also even without the alarms I would wake and check my phone to try and preempt any hypos or whatever. It’s one of the things of being a parent of a diabetic kid, we have interrupted sleep. I promise you it does ease off but he’s nearly 15 now and I still have to get up at least once a week to deal with some issue or other.

What sort of numbers are you getting with hba1c? I think our team aims for under 52. Mostly we’ve managed that and now with looping he’s often much lower but now always.

Thank you, I'm able to cope being up once or twice a night but sometimes we are up, upto 9 times a night and that's when it really gets on top of you. I also have a four year old with unpredictable sleep, and also working full time, so it's hard not to feel sorry for myself at times current hba1c is 65, which has gone up from being 63 at the two clinics previous to that. We have had winter illnesses and an awful time with the G6 which I believe has made it go up. When G6 is working well, the ratios in place work well, but the pump can only do what it can with the information it is given

 

[T1DToddlerMum]

Thank you all for your kindness. It helps to talk to those in a similar position, this can be very isolating at times, toddlers are hard enough as it is!

 

[Sally71]

Thank you, we started on MDI for a couple of months but we're continually told because of their age and size MDI would never suit them (0.5 units either way was far too strong or nowhere near enough) we were sold the idea of the pump as a game changer and admittedly it is better than MDI but I do feel like it's not as good as anyone had hoped. Particularly when the Dexcom fails so often the pump doesn't really stand a chance when given inaccurate information or no information at times

That makes sense actually, pumps themselves are perfect for little ones who only need tiny doses. It used to be the case that sensor augmentation wasn’t possible for a child under the age of 6, and I thought that was because the algorithms couldn’t cope with such tiny adjustments. That was a while ago though, so it may be that newer pumps can do it; it sounds like it’s the sensors themselves that are the difficulty though for you and i don’t know what to advise for that. We did it in the beginning with just finger pricks and a basic pump with me doing all the adjustments, which was quite a lot of work but managed to keep her in the low 50s most of the time which wasn’t too bad. I hope you can get something sorted that works for you. Keep going and deal with it one step at a time, you’ll get there