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Cgm for children

Layah2013

Layah2013

Well-Known Member
Messages
60
Type of diabetes
Type 1
Does anyone know how old children have to be to go on to cgm and how would i go about getting one of these, my daughter is nearly 3 and is on the insulin pump but getting lots of night time

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If what you are looking for is something to alarm and wake you up in the night if your daughter went low it would be a CGM you should look at rather than a libre, because the libre doesn't alarm, you need to scan it to get the readings.

The first step to getting CGM would be to ask your consultant whether they would support an application to the CCG for funding - have a look at input diabetes on more information on when NHS funding might be available - http://www.inputdiabetes.org.uk/cgm/cgm-costs/

Alternatively you could self fund (if that is within budget for you) a dexcom works out at annual cost of less than £1,700, and is approved for use in those aged 2 and over. There are some threads on CGM costs - http://www.diabetes.co.uk/forum/threads/cgm-gm-price-comparison.75106/

What pump does your daughter have? The animas links up with the dexcom CGM and I think you get better prices if buying via animas. The minimed links up with the enlite CGM.
 
catapillar said:
If what you are looking for is something to alarm and wake you up in the night if your daughter went low it would be a CGM you should look at rather than a libre, because the libre doesn't alarm, you need to scan it to get the readings.

The first step to getting CGM would be to ask your consultant whether they would support an application to the CCG for funding - have a look at input diabetes on more information on when NHS funding might be available - http://www.inputdiabetes.org.uk/cgm/cgm-costs/

Alternatively you could self fund (if that is within budget for you) a dexcom works out at annual cost of less than £1,700, and is approved for use in those aged 2 and over. There are some threads on CGM costs - http://www.diabetes.co.uk/forum/threads/cgm-gm-price-comparison.75106/

What pump does your daughter have? The animas links up with the dexcom CGM and I think you get better prices if buying via animas. The minimed links up with the enlite CGM.
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Thankyou for your reply, she is on the aviva insight pump, i would be happy to fund it myself if this was the only option, i will take a look at the links and speak to her dsn and thankyou !!!

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Layah2013 said:
Does anyone know how old children have to be to go on to cgm and how would i go about getting one of these, my daughter is nearly 3 and is on the insulin pump but getting lots of night time

Sent from my SM-A300FU using Diabetes.co.uk Forum mobile app
Click to expand...

If your daughter is getting hypos at night then you need to do some basal testing and then lower her basal amounts where needed, which would be 2 hours before the hypo.
Depending on your pump ie if a vibe or a Medtronic then they have the receiver built in so you need the sensor and transmitter to use the features. These can be bought from the pump supplier.
Dexcom which is Vibe compatible is approved from 2 years. No idea about the others.
Invest in the book pumping insulin which can be found on amazon it's the best book out for learning about pumping and how to use the pump properly.
 
CarbsRok said:
If your daughter is getting hypos at night then you need to do some basal testing and then lower her basal amounts where needed, which would be 2 hours before the hypo.
Depending on your pump ie if a vibe or a Medtronic then they have the receiver built in so you need the sensor and transmitter to use the features. These can be bought from the pump supplier.
Dexcom which is Vibe compatible is approved from 2 years. No idea about the others.
Invest in the book pumping insulin which can be found on amazon it's the best book out for learning about pumping and how to use the pump properly.
Click to expand...
She is having her basal rates changed every other day but still getting the lows, i test every 2 hours and have done sonce she went on the pump, this is why im wanting a cgm as im so tired with getting up every 2 hours in the night for the last 4 weeks, and then having to wake her up to treat the hypos and het her back to sleep, and some one mentioned to me about cgm that can alarm when theae are happening, in order to get a bit of sleep as i cnt sleep just incase she goes hypo and i dnt wake to test her, im no good to her being a zombie.. her dsn has no idea why she keeps goin low as changin her basal rates is not working and changin her ratios is not doing anything!!!

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Layah2013 said:
Does anyone know how old children have to be to go on to cgm and how would i go about getting one of these, my daughter is nearly 3 and is on the insulin pump but getting lots of night time

Sent from my SM-A300FU using Diabetes.co.uk Forum mobile app
Click to expand...

A friend of mine has three type 1 children and all have a cgm. oldest is 16.
 
Layah2013 said:
She is having her basal rates changed every other day but still getting the lows, i test every 2 hours and have done sonce she went on the pump, this is why im wanting a cgm as im so tired with getting up every 2 hours in the night for the last 4 weeks, and then having to wake her up to treat the hypos and het her back to sleep, and some one mentioned to me about cgm that can alarm when theae are happening, in order to get a bit of sleep as i cnt sleep just incase she goes hypo and i dnt wake to test her, im no good to her being a zombie.. her dsn has no idea why she keeps goin low as changin her basal rates is not working and changin her ratios is not doing anything!!!

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Click to expand...
I would suspect she is hypoing due to her honeymoon period, ie her pancreas is coughing and spluttering whilst it produces the last of her own insulin.

Has anyone explained to you about temp basal rates? Would it be a good idea if she is running low at night to put a temp basal on so she doesn't hypo?
 
Hi yes shes had temp basal on and she falls hypo at different times, all through the night, so her dsn has changed her basal rates one hour at a time aswell but with no luck, if she falls hypo at 1am the next night it cud be 3 am n then 5am on a different sum times it was 11pm so her dsn changes all ov her hourly basal rates but they keep happening, its very frustrating as they say this shudnt happen on the pump, and she drops low very quickly i.e - i tested her at 11pm when i went to bed and she was 10.4 i then checked an houe later to see how her bg was and she had dropped to 3.0 in just that hour, so i cnt leave her very long without testing and treating her, im scared to sleep incase shes left for a while and doesnt wake up because shes to low...

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Its just a suggestion but have you tried a different insulin? I do suspect your daughters problems are due to her honeymoon period and it doesn't matter whether she is on a pump or injections if her pancreas is chucking out insulin at odd times then she will hypo.
Also if you feed pasta rice or other long acting starchy carbs then avoid these for the time being as they can cause havoc with blood sugars.
 
CarbsRok said:
Its just a suggestion but have you tried a different insulin? I do suspect your daughters problems are due to her honeymoon period and it doesn't matter whether she is on a pump or injections if her pancreas is chucking out insulin at odd times then she will hypo.
Also if you feed pasta rice or other long acting starchy carbs then avoid these for the time being as they can cause havoc with blood sugars.
Click to expand...
Hi no ive not tried any other insulin she is on novarapid, i wasnt aware there was any others, other than the levamere she had on the pen therapy, regarding the cgm i would be happy to fund it myself i just dont know how to go about it as her dsn as never mentioned it, i only heard about cgm from another mum !!

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@Layah2013 if you are happy funding it yourself, you just need to buy it from the relevant company (dexcom/enlite/Abbott) online (remembering to check the box for vat exemption) and start with it - you don't need a prescription and I'm not sure how helpful the DSN will be with how to use it, it will depend on how much experience they have with them. However, there are tonnes of YouTube videos on how to insert CGM sensors, including how to apply them to kids. And I'm sure they all come with comprehensive instruction manuals (I've got a dexcom & the instruction are straight forward to follow - it's all fairly intuitive).

Obviously, do a bit of research first on which one is best for you. And do ask your DSN about the chances of obtaining NHS funding - it might be more likely for children.
 
Layah2013 said:
Hi no ive not tried any other insulin she is on novarapid, i wasnt aware there was any others, other than the levamere she had on the pen therapy, regarding the cgm i would be happy to fund it myself i just dont know how to go about it as her dsn as never mentioned it, i only heard about cgm from another mum !!

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All you do is ring up and order the system yourself you can have the G4 or the G5 http://www.dexcom.com/en-GB
 
Layah2013 said:
Do you know how they got these was it funded or did they have to get there own !!!

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Hi @Layah2013, sorry for the late reply.

The children I mentioned were offered a 2 week trial through the hospital. If they wanted to continue after the 2 weeks, they could keep the scanners, but had to buy the sensors. So granddad, Nana and mother/father fund the sensors.
Last week I asked my diabetes Doctor about getting one on loan, but he said they were only on loan to patients with hypo unawareness or high BS, so I didn't qualify, but, I am still thinking about it.
 
Robinredbreast said:
Hi @Layah2013, sorry for the late reply.

The children I mentioned were offered a 2 week trial through the hospital. If they wanted to continue after the 2 weeks, they could keep the scanners, but had to buy the sensors. So granddad, Nana and mother/father fund the sensors.
Last week I asked my diabetes Doctor about getting one on loan, but he said they were only on loan to patients with hypo unawareness or high BS, so I didn't qualify, but, I am still thinking about it.
Click to expand...
Ok thankyou for that, well she deffinatly has hypo unawareness, but ive been told i need to self fund the dexcom and its nearly £2000,

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Robinredbreast said:
The price of the dexcrom is so expensive, have you had a look at the Freestyle Libre Cgm ?
https://youcandoit.freestylediabete...9_vRv-O6nF5KN03wpAKvsXIA8mzeNjUnsOhoCnlvw_wcB
Click to expand...
I think they have to be 4 years old and upwards to use that and she is only nearly 3, i dont know what else i can try i was thinkin of trying a hypo alarm bracelet on her but dont know of any children that use it, and if it actually works on kids

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@Layah2013 has your consultant confirmed that they will support a funding request to the CCG? But they just don't know how to complete the paperwork? So your consultant agrees there is a clinical need?

Please contact INPUT diabetes for their advice and assistance on the next steps, what paperwork needs completing, how best to make your case to the CCG etc - http://www.inputdiabetes.org.uk - they are a charity assisting people in accessing diabetic technology via the NHS so are likely to have access to successful applications, they might even have experience of making requests to your CCG.
 
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