Our 3 yr old was diagnosed in Feb.

[everydayupsanddowns]

Jamie doesn’t qualify for a pump yet as he doesn’t require enough insulin

Hmmm... I wonder if that‘s some slightly muddled thinking about ‘hybrid closed loop’ pumps which integrate with CGM - eg the Tandem tSlim which works with the Dexcom and can automate some parts of insulin adjustment to try to increase time in range. The algorithms of these devices often need minimum ‘total daily dose’ to work safely. But of course you don’t HAVE to use them in that mode. you can just benefit from the dose precision of 10th of a unit, and fullt flexible basal profiles adjusted to 100ths of units...

And as @Sally71 says, I’ve known families with babies diagnosed at a few months old who used insulin pumps precisely BECAUSE smaller and more accurate doses were possible!

 

[trophywench]

Yeah cos basal doses can go to 3 decimal places with some pumps too!

 

[PaulyB79]

Disappointed to hear you aren’t getting replies to your questions @PaulyB79

Bristol Children’s Hospital generally has a very good reputation, is that where you are based? They certainly seem quite up to speed on pumps, CGM etc, though in my experience of the adult service the CCG isn’t enthusiastic about widespread CGM funding, though I did think the chances were higher in youngsters. Good that you have DLA though.

No, we are with Hengrove i think although it was originally via BCH (who were amazing) i'm wondering if we can change to another health authority though? Little one starts pre-school this week and we have had training booked in. only after my wife emailed to enquire what we would need to take etc did we find out it had been cancelled but we had nothing from the nurses to tell us that. We just feel very unsupported. On a happier note, We have been using the Dexcom for 25 days now and have had mixed results. But in the most part what a wonderful little bit of kit. We have found it can be wildly off at times and absolutely on the money at others. But, the overall finger sticks have reduced massively which is something we all agree on is good. The changing and reapplying the sensor isn't a pleasent experience. Little one gets a bit hysterical, we have tried watching videos of kids putting it on etc (good old YouTube) to reassure her and i'm not sorry to admit i've resorted to bribary (she will play on that 100% lol) any tips on how to overcome this? We are confident that in time she will be fine the same way she took to finger sticks and insulin injections. I just hate her getting so upset.
As always i am super grateful for your input. you lot really are fab.

Thanks

 

[everydayupsanddowns]

Sorry to hear your little one is struggling with the sensor application

It is one of the least painful sensor / infusion set type insertions I have experienced, but it does make a bit of an ole clunk, which is probably quite off putting?

Plus there’s always that big build-up, which really can’t help.

Any chance of a distraction tactic? Get her really occupied in something and then whack it in? Or a superhero bravery chart with a big reward for a set number of changes?

There are numbing creams (emla?) that you can try... And way back when there was a device called ‘buzzy4shots‘ or something like that which used a combo of vibration and temperature to distract the nervous system.

Rest assured you aren’t the first to have experienced this, and there are lotions, potions, tactics and strategies you can try.

It might be worth joining one of the FB groups with lots of parents for ideas?

 

[Thebearcametoo]

If bribery works then go for it.

 

[trophywench]

Bottle of Bombay Sapphire would gain brownie points from me too, dad!

 

[Deleted member 27171]

No, we are with Hengrove i think although it was originally via BCH (who were amazing) i'm wondering if we can change to another health authority though?

You should be able to, we’ve never lived in the same CCG area that our son’s hospitals came under - I know our current clinic takes children from all over the country too, I think the NHS choose and book system (if it’s still called that) allows you to go pretty much anywhere so long as they have capacity and many clinics allow self referral too, so might be worth a look at BCH website to see if it details anything. If the team aren’t providing enough support it‘s a legitimate reason to change - if any were needed.

 

[trophywench]

Hear Hear to that, @LucyDUK !

 

[Asherly]

@Asherly - I don’t understand how you can’t have a pump because you son needs small amounts of insulin, that's part of the great thing about pumps is that they can deliver much smaller and more precise doses than pens can. A pen can only go to the nearest half unit, pumps can do to the nearest 0.1, in fact the one my daughter has got now gave her a bolus of only 0.01 the other day
When she was first diagnosed her total basal was only 9 units per 24 hours and she could go 24 hours on only 20, including all her boluses, the pump coped with that easily. Her current pump could cope with less than 3 units a day on basal. Our hospital have had premature babies on them... Are you sure the hospital aren’t just telling you this because they don’t want to pay for the pump? They are quite expensive!

Agree with you about Dexcom though - we’ve just switched to that from Libre, and it's fab! 🙂

Hey hey, minimum requirement for the t slim 2 is a total of 8.5 units but Jamie has less than that. We want a pump that communicates with Dexcom and that is why we do not have the other pump that is available for tiny ones. We absolutely need the smaller denominations to what an insulin pen can deliver. Also they were keen for us to learn the art of finger pricking and Jamie’s blood before we got any technology as machines fail, phones break etc.

 

[Asherly]

No, we are with Hengrove i think although it was originally via BCH (who were amazing) i'm wondering if we can change to another health authority though? Little one starts pre-school this week and we have had training booked in. only after my wife emailed to enquire what we would need to take etc did we find out it had been cancelled but we had nothing from the nurses to tell us that. We just feel very unsupported. On a happier note, We have been using the Dexcom for 25 days now and have had mixed results. But in the most part what a wonderful little bit of kit. We have found it can be wildly off at times and absolutely on the money at others. But, the overall finger sticks have reduced massively which is something we all agree on is good. The changing and reapplying the sensor isn't a pleasent experience. Little one gets a bit hysterical, we have tried watching videos of kids putting it on etc (good old YouTube) to reassure her and i'm not sorry to admit i've resorted to bribary (she will play on that 100% lol) any tips on how to overcome this? We are confident that in time she will be fine the same way she took to finger sticks and insulin injections. I just hate her getting so upset.
As always i am super grateful for your input. you lot really are fab.

Thanks

How are you getting on? We are having the same issue with our 3 year old. I’m curious how many days use do you get from your daughters?