Our 3 yr old was diagnosed in Feb.

[PaulyB79]

Hi all.

Firstly, thank you for allowing us to join this group. It's really good to know there is such a strong support network out there.

Our little squidge was diagnosed in Feb and is only just 3. We are just about to self fund the Dexcom G6 but are struggling to find out how to bolus correctly. (because of this we haven't started it yet)

Up to now we have been finger pricking and using the accucheck which then provides the bolus needed based on carbs. As with all parents i suspect, we really hate having to keep stopping her playing or whatever to prick her (even though she handles it like a boss) and are looking at taking the plunge to the G6. I have seen that many people use the mysugr app but that is saying you need to be of a certain age or above? Is there anything anyone can suggest? It's really all very confusing.

any, and i really do mean ANY advice from anyone in a similar situation would be most welcome.

thanks in advance.

 

[Deleted member 27171]

Hi @PaulyB79

Welcome to the forum. I can't see any reason the MySugr app wouldn't work for a child it might just be a minimum user age rather than it causing any issues. Could you contact her DSN and ask what they would suggest? They're usually all over the latest apps and gadgets and may be able to recommend you something they know other parents use successfully and maybe even something they can access remotely to make clinic appointments easier too.

 

[PaulyB79]

Hi LucyDUK.

thank you so much for the speedy reply.

We have tried - several times to contact our local support. Unfortunately they are not the greatest at getting back - I totally understand it's a crazy time for them and have no doubt they are very busy. sadly our support is none existent. It all seems a bit of a postcode lottery

But, we shall persevere and keep asking.

 

[Deleted member 27171]

Oh that is disappointing - I am moving your thread to the parents section as you may be more likely to get responses from parents using similar things there and other parents are more likely to be 'watching' that area for posts. Hopefully you'll get some helpful suggestions.

 

[Thebearcametoo]

Have you been offered a Libre? For younger children I think the funding for a Libre is pretty straight forward and it would save you a fortune.

No support from your team is bad though. When is your next clinic?

 

[ColinUK]

Want to say hello and welcome to the forum. Can’t add much more as I’m not a parent but wanted to welcome you nevertheless.

 

[stephknits]

Hi and welcome from another parent, although daughter is 16! That is terrible that you are not getting a lot of support. Kids are usually supported very well. You could look at changing your hospital to see if you can find a more pro active team. My daughter was diagnosed in May and we have had all the help we need, with a text service, email support, phone and appointments where necessary. We got a libre funded after 12 weeks from diagnosis - the funding should be straight forward for kids.
Welcome to the forum, glad you found us

 

[PaulyB79]

I don't think our local NHS service will fund. We have got DLA etc so happy to self fund. I don't like to moan about the support as i completely understand the team are likely rammed.

Have you been offered a Libre? For younger children I think the funding for a Libre is pretty straight forward and it would save you a fortune.

No support from your team is bad though. When is your next clinic?

No, we haven't been offered anything like this. we have the finger pricker and accucheck. Which we have been using fine. but we would really like to get on the monitoring without having to prick her all the time.

 

[Deleted member 27171]

That’s very understanding of you, but tbh many clinics are very busy but still make huge efforts to ensure young recently diagnosed children and their parents are well supported. Having a knowledgable and easy to contact team is really important and as you are clearly quite pro-active yourself the advantages of a team with similar attitude would likely make a world of difference. It might be worth some research to see what other clinics you could access might be like - even if you decide not to move, no harm in looking.

The Dexcom does have some advantages over the Libre if cost is not a barrier as you will be able to get alerts when high or low and can adjust the levels at which alerts sound to get as much ’notice’ of dips or rises as you feel comfortable with. I’m surprised the clinic haven’t mentioned it though - it seems a lot of newly diagnosed children get provided almost as the default now or at least given the option to choose. I have an inkling that the official license for Libre might be for use in children over 4 years which could be the issue, but clinics can often find their way around things or prescribe Dexcom for a bit until she’s old enough. I think @Asherly has a child under 4 who uses one or the other and did pretty soon after diagnosis.

My son uses a pump so this calculates the dose for us, but when discussing with my son’s consultant what to do in event of a need to use injections for a while he suggested the MySugr app so I imagine it works well, but I’ve never had the need to use it so couldn’t comment much further really.

 

[PaulyB79]

Have you been offered a Libre? For younger children I think the funding for a Libre is pretty straight forward and it would save you a fortune.

No support from your team is bad though. When is your next clinic?

Our next clinic is October. the last was a virtual clinic (obvious reasons) and we got a kind of "well all is going well, keep doing what you are doing" but that was it really.

I'm very grateful for all the responses.

 

[PaulyB79]

That’s very understanding of you, but tbh many clinics are very busy but still make huge efforts to ensure young recently diagnosed children and their parents are well supported. Having a knowledgable and easy to contact team is really important and as you are clearly quite pro-active yourself the advantages of a team with similar attitude would likely make a world of difference. It might be worth some research to see what other clinics you could access might be like - even if you decide not to move, no harm in looking.

The Dexcom does have some advantages over the Libre if cost is not a barrier as you will be able to get alerts when high or low and can adjust the levels at which alerts sound to get as much ’notice’ of dips or rises as you feel comfortable with. I’m surprised the clinic haven’t mentioned it though - it seems a lot of newly diagnosed children get provided almost as the default now or at least given the option to choose. I have an inkling that the official license for Libre might be for use in children over 4 years which could be the issue, but clinics can often find their way around things or prescribe Dexcom for a bit until she’s old enough. I think @Asherly has a child under 4 who uses one or the other and did pretty soon after diagnosis.

My son uses a pump so this calculates the dose for us, but when discussing with my son’s consultant what to do in event of a need to use injections for a while he suggested the MySugr app so I imagine it works well, but I’ve never had the need to use it so couldn’t comment much further really.

Yeah, I think looking at different clinics might be the way we need to go. As I say, I won't bash them as I do understand we are in weird circumstances. but it's horrible not feeling supported. Ultimately this is our baby's life and nothing is more important.

We would love a pump but are easing into things as best we can also, she being a little terror at times might not like that - Time will tell lol.

thanks again.

 

[Thebearcametoo]

I can totally understand not wanting to finger prick all the time. Which is why Libres are commonly funded by the NHS for younger children. It’s also common to have pumps offered for under 5s as it can deal with the smaller increments of insulin needed for smaller bodies.

If you want to tell us whereabouts in the country you are we may be able to suggest a different neighbouring trust to try. I know we are very lucky in Oxfordshire with the care we get but NICE guidelines should mean equal access to care wherever you are in the country.

One thing we found early on in our care was that we didn’t always get told all the options all at once. So it may be that asking about continuous monitoring (and/or pumps) at your next clinic might get you some answers. You should be having clinics a minimum of quarterly and at this stage in her diagnosis I would expect you to have monthly contact with your team on top of that. If not I would drop an email to your DSN copying in the admin if you have their details and your consultant. Having paper (electronic) copies of communication can help speed things along sometimes.

DLA is not a substitute for NHS care yes if you get a pump and want a dexcom instead of a Libre because it communicates with the pump then go for it but at the stage you’re at I would push for a Libre first even if it’s just for a trial.

 

[SB2015]

Welcome to the forum @PaulyB79

I am really sorry to hear that you are not getting the support that you need from your team. There have been a number of parents on here whose children have been diagnosed this year and they have had regular contact with their team. I would encourage you to ask for a referral to another team if they are not forthcoming with support.

The Libre certainly makes things a lot easier than finger pricking, especially overnight. I use it in conjunction with my AccuCheck Combo pump and it certainly reduces the amount of finger pricking, although I still do these at present at meals and if I feel hypo.

Have you seen the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It is very well written and regularly updated with the latest tech available to us, so worth getting the latest edition.

Keep in touch and keep the questions coming. You have already seen that there is plenty of support available on here.

 

[PaulyB79]

We are in the Bristol area. Would gladly look at alternative options. The dexcom is being delivered today - But, it's going to sit in a box in the cupboard until we get some advise from our care team - though, still nothing back despite calls and emails.

 

[trophywench]

Has @everydayupsanddowns seen this thread?

 

[everydayupsanddowns]

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.

The Accuchek Expert (the bg meter with a bolus calculator) is great for making more subtle adjustments to doses, the maths it works around are pretty straightforward, and like @LucyDUK I’m not sure why the very similar maths in mySugr’s bolus calculator couldn’t be used. I’m also not sure what the ‘official’ guidance for minimum age on Expert was either!

The other alternative would be to work out the doses yourself, which generally involves simpler ratios (to keep the maths easy!). I would suggest that any bolus calculator is worth considering. But of course... any advice from software needs to be reviewed and sense-checked by you as a parent, rather than blindly trusted!

 

[trophywench]

I thought you would be likely to know more about NHS services in Bristol than me!

 

[PaulyB79]

thanks all.

We have had contact from our nurse now (yay) though still waiting on Dexcom to contact for further instructions. Getting there

 

[Asherly]

Hey all. We had a Dexcom G6 funded as soon as they could and it has its highs and lows..... brilliant bit of kit and your lo should automatically qualify for it as one of the criteria is under the age of 5. We received ours within 6 weeks of diagnosis. We use the Mylife app but when we set it up I had to use my date of birth I think to help with calculations for insulin to administer and corrections etc. Jamie doesn’t qualify for a pump yet as he doesn’t require enough insulin so we have to round up or down to dosages we can give with injections. Sorry to hear about your little ones diagnosis..... Hope you have your head above water and give your team a little kick ours have been fab and always here to support.

 

[Sally71]

@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!