Parents to T1 newly diagnosed toddler - pump advice

[Kaujla11]

Hi All,

Our 19 month old son was recently diagnosed with T1. It came as a huge shock to my wife and I. He was admitted to hospital for a couple of days whilst he was treated and we got our heads around this new way of life. Although it has turned our life upside down, we are glad it was caught early and he didn’t become severely unwell.

He is currently on MDI - 5-6 times a day (novorapid x 3-4 and levemir x 2) and finger pricks (5-6 times a day). He is tolerating this so far, but we are keen to move him onto a pump and CGM sooner rather than later so we can get better insight and control on his diabetes (plus alleviate some of the constant jabbing).

We have been advised that the Dexcom G6 is the most suitable CGM for him. With regards to the pump we have been advised our local NHS can provide either: Medtronic Minimed, tandem tslim or the omnipod. Do any other parents on here have experience with CGMs and insulin pumps for kids a similar age to our son that could provide advice on their experience? Sorry if there is another thread about this, but I couldn’t find one!

Thanks for your anticipated support.

K

 

[Sally71]

If you’re definitely getting Dexcom G6 then the t-slim connects with it and will adjust basal automatically to reduce problems with highs and lows - not perfect, but helps loads! Medtronic uses different sensors for theirs, it’s not compatible with Dexcom. Don’t know whether Omnipod can connect with sensors but it has the advantage of being tubeless so nothing to catch on things (although it’s obviously a bit more chunky than the cannulas for the tubed pumps). My daughter has been pumping since age 6 and we’ve never had a problem with tubes catching on things, it’s usually easy enough to hide the tube under clothing. Sorry I don’t have any experience of a younger child with a pump.

 

[Thebearcametoo]

If you’re going with the dexcom then yeah the tslim is the obvious choice as they connect. Plus it’s a good option with younger children as the basal amounts can be really low. My daughter’s nearly 11 now so a little bit older. She wears a pouch so she can have her pump and phone on her. The dexcom has a follow app so you can see what his readings are and get alerts even if he’s not with you. Will the dexcom be funded? I don’t know if they provide readers with them if they’re funded. We self fund and bought a second hand iphone that’s compatible with the dexcom as it made more sense for her than the reader. Our team have been great with the set up of the pump and CGM. You do end up with a lot of information and it can be tempting to micromanage it so there is a balance to be struck between necessary changes and tinkering. The alerts can be annoying but knowing you’ll get one for night time hypos etc is reassuring. (If you use iPhone there’s the Sugarmate app you can use so that you can turn on do not disturb and still get alerts)

There’s still faff and we’ve still had some issues with pump set changes but it’s every 3 days and over with pretty quickly. We’re very happy with the combo we have.

 

[Asherly]

Hi All,

Our 19 month old son was recently diagnosed with T1. It came as a huge shock to my wife and I. He was admitted to hospital for a couple of days whilst he was treated and we got our heads around this new way of life. Although it has turned our life upside down, we are glad it was caught early and he didn’t become severely unwell.

He is currently on MDI - 5-6 times a day (novorapid x 3-4 and levemir x 2) and finger pricks (5-6 times a day). He is tolerating this so far, but we are keen to move him onto a pump and CGM sooner rather than later so we can get better insight and control on his diabetes (plus alleviate some of the constant jabbing).

We have been advised that the Dexcom G6 is the most suitable CGM for him. With regards to the pump we have been advised our local NHS can provide either: Medtronic Minimed, tandem tslim or the omnipod. Do any other parents on here have experience with CGMs and insulin pumps for kids a similar age to our son that could provide advice on their experience? Sorry if there is another thread about this, but I couldn’t find one!

Thanks for your anticipated support.

K

Hey firstly sorry to hear of your little ones diagnosis. My then 2yo was diagnosed in May last year. We have a Dexcom G6 and in December my lad reached the minimum requirement to have a Tslim X2 all be it unlicensed. we only have access to the basal IQ for now.
Dexcom is a must and I say that even though we never get the full 10 days usage. The pump changed our world. Jamie cuddles it to sleep. No more injections it’s been better for him and we have better control than we did, although still miles to go. Just being able to give 0.214 units is amazing no more waiting for Jamie to get high to be able to give 0.5 as an injection or give the insulin and hope and prey i can get more food in to make it balance. If Jamie tells me he wants 30 carbs and then chucks half to the dog I can cancel off half if I set the bolus up smart. Fire any other questions and il try to help answer them if I can. Again I’m sorry you have had this diagnosis and to find this group - welcome to type 1 diabetes.

 

[Kaujla11]

Thank you all very much for your replies and advice.

Yes I believe the Dexacom is the only CGM we can have funded at this moment and it seems to be reliable and as it integrates with the T:Slim I suspect we would end up with that combo. I was interested in the omnipod as it is tubeless and my son may be less interested in pulling at it, but I feel the T:Slim may be more beneficial (even if he tries to pull the wires).

@Sally71c - is there a different CGM you would recommend?

@Thebearcametoo - yes the Dexacom is funded - I need to check what comes with it, but useful to know about the readers, how else can you view the data, on an app? I’d be reassured at night with the alerts (even if they are annoying) as currently the not-knowing and checking is very stressful.

@Asherly - thank you, and sorry to hear your little one’s diagnosis too. He’s a similar age to our boy so very helpful to know the Dexacom and t:slim pump have helped you. It seems much more flexible having a pump and will help us with mealtimes significantly. How does your son carry the pump on him?

Thanks again for responses, it is very helpful.

 

[Sally71]

No I can’t recommend another CGM - we’re finding Dexcom so accurate that we hardly do any finger pricks any more, although I know not everyone agrees with this, I think to some extent it depends on the person, some systems work better for some people than others. We had Libre 1 for a while but you have to scan that to get any information, it doesn’t alert you, it was better than nothing and we loved it while we had it but Dexcom is definitely more accurate for us. Can’t comment on any others as we haven’t used them, but if you get the Medtronic pump then it makes sense to have the sensors that link to it etc. T-slim is a good pump but you’ll probably love whatever you get as you have nothing to compare it to! They all have their own pros and cons

 

[Asherly]

Thank you all very much for your replies and advice.

Yes I believe the Dexacom is the only CGM we can have funded at this moment and it seems to be reliable and as it integrates with the T:Slim I suspect we would end up with that combo. I was interested in the omnipod as it is tubeless and my son may be less interested in pulling at it, but I feel the T:Slim may be more beneficial (even if he tries to pull the wires).

@Sally71c - is there a different CGM you would recommend?

@Thebearcametoo - yes the Dexacom is funded - I need to check what comes with it, but useful to know about the readers, how else can you view the data, on an app? I’d be reassured at night with the alerts (even if they are annoying) as currently the not-knowing and checking is very stressful.

@Asherly - thank you, and sorry to hear your little one’s diagnosis too. He’s a similar age to our boy so very helpful to know the Dexacom and t:slim pump have helped you. It seems much more flexible having a pump and will help us with mealtimes significantly. How does your son carry the pump on him?

Thanks again for responses, it is very helpful.

Hey so Jamie has a hid - in belt that are around £25 for one but it is what most people go for. He loves holding the pump in his hand or clipping it onto the front of his t shirt or into his trousers like a grown up. We also put additional tape over the canular part to give extra protection against it getting caught. We did not get on with auto soft canulars so use tru steel that are very similar to an injection -I completely reccommend them if your lo thinks they are a super hero most days of the week? The other way we found for a good pump holder - now this sounds strange is a bandarff- like a bandanna they sell packs of 2 in Asda and they fit like a boob tube around Jamie and I roll the pump up in that. At night he just has it loose next to him in bed. Not sure if you know there is a group on Fb t slim x 2 users or something and then an offshot group for kids. Just might be worth having an investigate. Braver than me I didn’t dare look up anything on the web - this site was as far as I got for a good 3 or 4 months post diagnosis. Happy to take any other questions fire away. I’m curious is everyone in your house on board with the pump because we could not imagine how Jamie was going to get on with wires etc but the actual pump and wires thing hasn’t bothered Jamie at all and we have potty trained whilst swapping onto pump too.