Self funded CGM for 8 year old

1st post, hoping its in the right place...

Im looking into getting a CGM for my kid who is currently doing MDI.

Its 7 months or so since diagnosis, he is a fairly sensible 8 year old, and my medium term hope is to get him intergrated pump and CGM, though where we live now getting CGM or pump funding doesnt seem straightforward and I know I probably have to be sure I can fund it for at least 10 years or I wouldnt want to put him through it, as I wouldnt want him to come to rely on something I cant afford the consumables for.

The main drivers for the CGM is Id like him to be doing less finger pricking, Id like him to have more blood data while doing sports, Id like to have a better understanding of how different foods are affecting him, and Id like to avoid some of the lows and highs.
Set against that is the discomfort for him of wearing the device, it getting caught on things, the running costs etc.

Does anyone have any experience of self funded CGM for their kid? Is it easy/possible to get a trial device to see if he can live with it. The team at the hospital seem to be in a "expectations management" pattern, where they manage our expectations of him getting a pump down whilst not saying its impossible. He seems to be old enough and doing well enough with MDI that he'd only get a pump if we wait and jump through various hoops, or maybe move hospital. Id like him to have a pump also, as he often wants to eat more frequent smaller meals in a day and he ends up with a lot of injections and sometimes deciding to not eat to avoid injections, which he shouldnt have to feel like. Despite this, I still feel like the CGM would have more benefits at this time, even if part of that is educating us parents.

Any advice gratefully received. If I had type 1, I'd definitely invest in a CGM for myself as it seems the technology is expensive but sufficiently mature to make a difference over the long term.

AndBreathe said:

Have you looked into the Libre? It's not an integrated CGM, and measures interstitial fluid, rather than capillary bllod, but it would give you/him the all day and all night profiling you would like for him.

http://www.freestylelibre.co.uk/

Click to expand...

Yes, on a waiting list for that, since the start of April, didnt hear anything at all so reconsidering the alternatives. That seemed like a lower cost way to test the CGM water but doesnt offer the chance for integration with a pump. I guess demand massively outstripped supply and maybe they've had a few issues and are sorting out existing customers before accepting new ones.

azure said:

I use a pump but don't use the CGM with it (simply because I can't afford it at the moment).

My pump is an Animas Vibe, which can be used with the Dexcom CGM.

I love my pump and I find it gives me smoother blood glucose levels. I'm also quite sensitive to insulin and the pump allows me to have tiny doses, which has reduced my hypos, especially the nighttime ones. If one of my children git diabetes, I'd certainly look into a pump for them.

You say your hospital is downplaying the option of a pump. Could you push them a bit? Have you told them you'd fund the CGM side of things?

Click to expand...

I probably should push the pump side of things. If I dont get anywhere with the clinic we'll probably move to a different one, we're on the border of the trust areas and the clinic we attend seems a bit slow when it comes to technology. It seems that if my kid manages his condition well they will focus more on the kids with more hypo issues and or higher sugars.

The smaller doses are another aspect of the pump I like for kids. I suppose its not a direct comparison because you no longer do a separate basal injection with pump but I found with the disposable basal pen he has now the dose was only adjustable in single units which seems a bit crude when a units adjustment either way might mean a 25% reduction or a 20% increase in basal dose.

I'll tell the clinic I plan to get the CGM at the next appointment. The pump they are expecting to get trained on is not the one that integrates with the dexcom, which is the cgm I favour right now as the feedback I read said it is the more comfortable sensor to insert.
Im going to choose the kit based on what works the best rather than who the NHS Trust has a deal with. It seems to me that its going to be me and my son that needs the training on the devices more than the diabetic nurses, they are lovely people and did a great job of turning my kid around but I spend more time with my kid in a day than the clinic does in a year. Also I wont live in the area forever, and I hope that as pump uptake increases, pumps and CGMs will become a nobrainer costwise. Its not like the testing strips are cheap and most of the pump technology is decades old. I wouldnt be suprised if there are open source pumps in 10 years, what with 3d printing etc.

I would like to understand what rights I have as a parent to have my child use a CGM, whether I need to get approval from the NHS even if Im funding it. I dont really want to be going out on a limb.

Obviously there is a psychological aspect to wearing a device which is harder for me as an adult to fully understand, this is one area where I'd like to get input from the NHS psychologist, not that my kid has ever seen the psychologist the clinic, who seems to exist on a semi theoretical level as a label on a door that is always closed.

My kid hasnt had to put up with a lot of bullying, he did get a bunch of kids around him shouting "faint faint faint" once when he was tripped up playing football but nothing else Im aware of. But away from school he is keen to have control over who knows he has diabetes. He wouldnt want to wear a device that was too much on show, which I totally respect. I think this is my main fear about diabetes after the longer term effects, that it steals some of the spontaneity of his childhood.

azure said:

I use a pump but don't use the CGM with it (simply because I can't afford it at the moment).

My pump is an Animas Vibe, which can be used with the Dexcom CGM.

I love my pump and I find it gives me smoother blood glucose levels. I'm also quite sensitive to insulin and the pump allows me to have tiny doses, which has reduced my hypos, especially the nighttime ones. If one of my children git diabetes, I'd certainly look into a pump for them.

You say your hospital is downplaying the option of a pump. Could you push them a bit? Have you told them you'd fund the CGM side of things?

Click to expand...

He has the lantus for the junior star again now, for some reason they switched him across to the solo star(?) pens which are disposable.

Thanks for the advice folks. Is it normal that a UK primary school would have a policy of not administering glucagen in an emergency?

Thanks for the advice. Nightscout looks good, Id be happy to set that up. Seems like share is not available in the UK, and its unclear when the G5 is coming here. If it was soon I would probably wait, though I like the idea of having the raw data. I must admit being a trained as an engineer and being new to diabetes I am shocked that parents are having to get out soldering irons and order chips off the net just to be able to get access to their own data in 2015. I've worked for a company in the past that made drugs, and drug delivery systems in the past and I understand about the onerous approvals processes, but I cant help thinking that the device manufacturers here are dragging their feet as they want more revenue streams or ways to monetise our data. I can understand that some sensor parts are proprietory and expensive, but I struggle to understand why the pumps are so expensive for what they are.

tim2000s said:

I guess its down to two things.

1. The cost of manufacture to very fine tolerances. If you are delivering 0.001u of insulin, repeatedly, for four years, it needs to be very carefully manufactured.

2. The number of items made. As all of these things are made and have to last for four years, then the need a solid level of robustness, again that will push mfg costs up.

Plus the amount of resource required to get the myriad of approvals to allow it to be used by patients.

As I was walking to work this morning, i was wondering whether an Open source Pump design wasn't a bad idea.Basically a modular item which could use any pen cartridge and could be flashed with an appropriate OS as and when necessary. Effectively a controller/store/activator model.

Just my thoughts anyway.

Click to expand...

There is an engineering student in Swansea? trying to make an open source pump accurate enough to deliver drugs. Probably not portable though.