Author Topic: Sensors  (Read 1663 times)

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Offline Aurorablaster

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Sensors
« on: 16 July 2013, 07:26:55 PM »
Having read Karen's heartbreaking post and been offered sensors on our last clinic visit we thought we'd take up the offer.  We have it writing to say the PCT had funding for 9 months of sensors. We didn't take up the offer on that first visit as he wanted to do the research about them and make sure it would be something of benefit.
My son does a lot of sport and his insulin sensitivity's shifting around like a sandstorm, and we've been alerted that you can go very low after strenuous exercise - not necessarily the night after that exercise.  He also feels he really needs to re-adjust his basal (he's dropped from needing approx 70 units per day to around 40- he weighs 69kgs)..so sensors seemed a fab way to go.  Patti's chatted to my boy - we're not being lazy here - he's really put in the work the last nearly four years to give himself the best outcome.  Like others on the board he's tested 10,12, plus times a day to get proper gc, set up appropriate basal rates etc.  Not easy in the teen years with all those other hormones surging it.
Turns out he can have the sensors...just not the two grand bit of kit that makes them work... that we would have to fund ourselves.
I truly appreciate how hard pressed the NHS is ( & I throughly count my blessings to live in a country with an NHS),  but why on earth offer a child sensors and then snatch it away at the last moment.  Thoughtless. :banghead:
 
Mother to type 1 son,
Carrier of peskey monogenic gene
Started Insulin 25.4.2013
Feeling Groovy

Offline Pattidevans

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Re: Sensors
« Reply #1 on: 16 July 2013, 08:23:19 PM »
Your son is a very intelligent young man, way advanced for his years, and I really think he does put in the effort.  To offer sensors but not the CGM seems madness.  I suppose some parents can afford it, but it's a lot of money and out of reach for a lot, particularly if the sensors will only be offered for 9 months.  What type/make of sensors are they?  I have seen cheaper prices for CGMs than £2K when they were discussed on this forum (Do a search on cost of CGMs and ChasC as the poster on the forum).  Other than that, we all need to google and see if we can find any funding.  Dollyrocker got some funding IIRC.   
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Dollyrocker

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Re: Sensors
« Reply #2 on: 16 July 2013, 09:17:43 PM »
Mine was supplied by a charity, I was told it would be mine or as long as I funded the sensors but it turns out that's not he case, I was only to have it while pregnant so I've had to give it back :(

To be fair I can't afford to fund it while on maternity leave anyway but I was a bit disappointed that the nurse (the same one I've been complaining about) misled me.

I was given sensors the hole time I was pregnant though and ad 2 left over, I should have kept them an passed them on shouldn't I, I gave them back. Doh



7/2014 7.2 (55) / 4/2015 7.3 (56) 1/2016 7.0 (53)
pumping with a shitty Accu Chek Insight

Offline Aurorablaster

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Re: Sensors
« Reply #3 on: 16 July 2013, 10:29:14 PM »
Thank you both for being so kind to reply *hugs*
I think I was so upset because the clinic had asked us if we wanted them, told us we had the funding and then sprung the bombshell.  Having had the consultant spend an hour saying what an excellent thing they'd be for him atm...
Apparently the only ones we can have with J's pump are the Dexcom 4 ones (might be something for you to bear in mind Patti, and after today I'll double check that is so).
I really don't mean to sound ungrateful.  If it were the other way round and the GCM were funded and we (just) could manage the consumables bit - I suspect many people are in our position.  I'll see if what's left of me noggin can think of some fund raising ideas. 
Thank you so much for the support xx
Mother to type 1 son,
Carrier of peskey monogenic gene
Started Insulin 25.4.2013
Feeling Groovy

Offline Pattidevans

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Re: Sensors
« Reply #4 on: 16 July 2013, 11:53:27 PM »
ahhh why did I not think of this earlier?  Ali (www.shootupandputup.co.uk) managed to get her CGM more or less permanently funded!

I'll email her!  Or drop into her website.

PS I have emailed and drawn her attention to this thread, she's busy bless her with her new baby.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Ali

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Re: Sensors
« Reply #5 on: 17 July 2013, 05:05:26 AM »
Thanks for the email Patti, between feeding, nappies and cuddles i dont get on here as often as i used to but this seems a productive way to stay awake during a night feed :-)
hi Aurorablaster, it sounds like you're doing a great job. Can i ask what pump is your son on? For clinic to say he can only use dexcom sensors with it, that makes me think it must be an animas vibe, which are already cgm enabled so you should only need to buy the transmitter which i believe are a few hundred pounds. The cgm enabled pump is the £2k bit of kit - lets start by being sure he doesn't have that already.
 
Diagnosed T1 aged 4 in 1983.
Medtronic pump & CGMS since Feb 07
Blogging about diabetes @ www.shootuporputup.co.uk
Baby girl born April 2014 - my experience of a diabetic pregnancy is here http://www.shootuporputup.co.uk/category/living-with-diabetes/pregnancy-living-with-diabetes/

Offline Aurorablaster

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Re: Sensors
« Reply #6 on: 17 July 2013, 09:38:28 AM »
O Patti - you DIAMOND!

Ali thanks so much for replying - hehe takes me back all the things I used to do during night feeds - that Radio four national anthems mash-up they used to open up the service with is forever rattling round me brain now.  The cuddles bit is sooo good tho :)
 John's on the Accu Chek Spirit Combo - so I'm not sure if Dexcom are the only sensors we could use - but they were the ones the clinic discussed.  Funnily enough I had approached Dexcom at the start of the year as me laddos starting his GCSE years and I wanted to make life a little easier for him - then I found out how much the GCM bit was and put it on the back burner 'til the clinic raised the question if he wanted sensors..

Thanks xx
Mother to type 1 son,
Carrier of peskey monogenic gene
Started Insulin 25.4.2013
Feeling Groovy

Offline Ali

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Re: Sensors
« Reply #7 on: 17 July 2013, 03:38:44 PM »
The Accuchec isn't CGM enabled so sadly you would need to get a full cgm system to use the sensors.
when is he due a new pump? (they generally last 4 yrs). Medtronic veo and Animas vibe both have built in cgm - if he had either of them the additional costs would be a few hundred for a transmitter plus sensors.
 
As it stands you would need a full cgm system - so you could get dexcom or Medtronic, no idea why the clinic are telling you how to spend your money by saying you must have dexcom (nothing wrong with dexcom, just if you're paying it should be your choice).
 
personally id try to get the clinic to let you get a cgm enabled pump - if they can make the case for you to get sensor funding they should be able to do it for the cgm too - one without the other is useless.
id also consider calling dexcom and explaining the situation - they may know of other people in your position who've found a solution.
Diagnosed T1 aged 4 in 1983.
Medtronic pump & CGMS since Feb 07
Blogging about diabetes @ www.shootuporputup.co.uk
Baby girl born April 2014 - my experience of a diabetic pregnancy is here http://www.shootuporputup.co.uk/category/living-with-diabetes/pregnancy-living-with-diabetes/

Offline Aurorablaster

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Re: Sensors
« Reply #8 on: 17 July 2013, 07:12:42 PM »
Thanks so much Ali. 
Sadly me laddo's only been on his pump for 18months so we're not due, what they termed, an 'upgrade' for another 2 and a half years.  I guess I'm just grateful we were able to get him a pump so quickly (a year) after diagnosis; it's really changed his life.
How's that Baba of yours in this heat?
Mother to type 1 son,
Carrier of peskey monogenic gene
Started Insulin 25.4.2013
Feeling Groovy

Offline Ali

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Re: Sensors
« Reply #9 on: 17 July 2013, 09:37:13 PM »
It is great that he has the pump, but don't let that stop you pushing them re cgm - if theybelieve he needs it there are ways ofmaking it work eg they can get him a new cgm enabled  pump and give his current pump to the next person on the list.   
 
Eva's doing great thanks. She's not too bad in the heat but breastfeeding  is a hot and sweaty business! And between the feeding and the heat I need hardly any insulin and lots of ice cream ;-)
Diagnosed T1 aged 4 in 1983.
Medtronic pump & CGMS since Feb 07
Blogging about diabetes @ www.shootuporputup.co.uk
Baby girl born April 2014 - my experience of a diabetic pregnancy is here http://www.shootuporputup.co.uk/category/living-with-diabetes/pregnancy-living-with-diabetes/

Offline Pattidevans

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Re: Sensors
« Reply #10 on: 17 July 2013, 11:45:09 PM »
How lovely to need loads of ice cream!  I nearly bought lolly moulds yesterday, that strawberry ice cream recipe would do brill lollies as it freezes firm.

Aurora, sorry to hijack.  Try contacting INPUT to see if they can help.  http://www.input.me.uk/  Particularly click the link to the CGM page.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Aurorablaster

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Re: Sensors
« Reply #11 on: 18 July 2013, 12:12:47 AM »
The way you're multi-tasking Ali - it'll be breast milk ice cream next!  I'll investigate the 'pump' swap idea - altho he's very, very happy with the combo it might be a tough sell to his nibs
& thanks (again) for the link Patti.  I think the fly in the ointment is that (for a teenage boy) he has very good control - 7.9s been his worst Hba1c - he usually floats betwixt 6.5 and very low 7s.  The nurse did offer to fit him with an Ipro there and then - but J (and myself tbh) didn't want that without having done the research ourselves; plus the consultant had sold us on the ability to review and adjust ourselves in sort of 'real time'.  Ipro hadn't even been mentioned by the drs.
You've both given me much to think about xx
Mother to type 1 son,
Carrier of peskey monogenic gene
Started Insulin 25.4.2013
Feeling Groovy

Offline Pattidevans

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Re: Sensors
« Reply #12 on: 18 July 2013, 10:51:35 AM »
What's Ipro?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Aurorablaster

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Re: Sensors
« Reply #13 on: 18 July 2013, 11:04:05 PM »
It's the IPro2 sensor - sits in the skin and they download the data on a weekly basis - we haven't had a chance to see how useful it is for J.  He much prefers having control himself over his D and it's fast coming to the point where he will have to manage it all on his own.  He may not rule it out - but I certainly wasn't going to let anybody stick anything in him 'til we'd made sure it was of benefit.  tbh it's a three hour round trip to clinic (four when he's back at school) for us and with all else going on just can't fit that in on a weekly basis atm.
Mother to type 1 son,
Carrier of peskey monogenic gene
Started Insulin 25.4.2013
Feeling Groovy