Newbie

[Darcysmun]

Hi my daughter darcy who has been diagnosed with type 1 diabetes 4 weeks ago and we are still trying to get our heads around all the info. She had a very high dka reading of 6.2 which was so scary and bs was 34. 6. She is an absolute trooper and has taken it all in her stride. We are still checking her bloods every 2hrs so it's exhausting. Have you any advice on libre or dexacom as we would love to hear your thoughts on them. I've also read somewhere that u can get something for the libre that alerts u??? Have any of u tried these

 

[Inka]

Hi 🙂 Sorry to hear about your daughter’s diagnosis. It must have been a big shock. All I can say is that it does gradually get easier as you learn more about Type 1 and about your daughter’s needs.

I don’t have the Libre or Dexcom, but given the choice I’d go with Dexcom. A friend has it and uses Nightscout very successfully. Hopefully someone with more tech knowledge than me will be along to explain more. You can set alarms for high and low sugars.

How old is your daughter? I do know one young child who managed to get a Dexcom funded due to their young age and nighttime lows.

You might also want to claim DLA as that money could help you cover the cost of extras.

Edited to add that I’d be asking about an insulin pump as soon as you can. Used properly they can reduce the risk of hypos and allow far more flexibility in dosing for meals. They also allow you to reduce the rate of basal insulin for exercise or increase it for illness.

 

[trophywench]

If self funding, Dexcom is going to be a lot more money than Libre. It isn't only the initial cost, it's the ongoing cost of the consumables to think about.

 

[SB2015]

Sorry to hear of your daughter’s diagnosis, but glad that you have found the forum @Darcysmun

It is a lot to take on board very quickly at the start. Glad to hear that Darcy is taking it in her stride. It will take a bit of time to get her levels settled and to work out the appropriate doses of her background (basal) and quick acting (Bolus) insulin.

A book that you might find useful is Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It clearly explains what is going on and is well indexed. It is regularly updated with the most recent tech available to manage our condition.

The Libre is a game changer, and many who have self funded initially have then been able to get it on the NHS, which is a lot less likely for the Dexcom. It will give you the current (ish. There is a bit of a time lag) glucose reading with a simple swipe and can reduce the need to finger prick. Brilliant for night time checks. Not only does it give you the level but it shows the direction of travel of levels so you can use this to head off highs and lows. I self funded in the very early days for 18 months but now get it on the NHS. For me it was an absolute game changer, and made the tips of my fingers very happy.

I have bombarded you a bit so I will stop and wait for the next questions from you.

 

[everydayupsanddowns]

Welcome to the forum @Darcysmun - I’ve replied to your thread in the parents section

 

[stephknits]

Welcome to the forum. I have tried both and if money was no object would go for dexcom. However the difference you get in terms of info and performance between the two is not worth the difference to your pocket between having an NHS funded libre and a paid for yourself dexcom in my opinion. However that is easy for me to say, as it's my diabetes and my decision. Anyway, if you have any qus about them, do ask away.

 

[Darcysmun]

Hi 🙂 Sorry to hear about your daughter’s diagnosis. It must have been a big shock. All I can say is that it does gradually get easier as you learn more about Type 1 and about your daughter’s needs.

I don’t have the Libre or Dexcom, but given the choice I’d go with Dexcom. A friend has it and uses Nightscout very successfully. Hopefully someone with more tech knowledge than me will be along to explain more. You can set alarms for high and low sugars.

How old is your daughter? I do know one young child who managed to get a Dexcom funded due to their young age and nighttime lows.

You might also want to claim DLA as that money could help you cover the cost of extras.

Edited to add that I’d be asking about an insulin pump as soon as you can. Used properly they can reduce the risk of hypos and allow far more flexibility in dosing for meals. They also allow you to reduce the rate of basal insulin for exercise or increase it for illness.

Thank u for ur reply. It was such alot to take in and we were in and out of hospital in 2 days and sent home with a lot of info. My daughter and I have have been researching different things and when I asked her about the pump she said she wouldn't want people to see it when she's at dance. Hopefully I can change her mind x

 

[Darcysmun]

Sorry to hear of your daughter’s diagnosis, but glad that you have found the forum @Darcysmun

It is a lot to take on board very quickly at the start. Glad to hear that Darcy is taking it in her stride. It will take a bit of time to get her levels settled and to work out the appropriate doses of her background (basal) and quick acting (Bolus) insulin.

A book that you might find useful is Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It clearly explains what is going on and is well indexed. It is regularly updated with the most recent tech available to manage our condition.

The Libre is a game changer, and many who have self funded initially have then been able to get it on the NHS, which is a lot less likely for the Dexcom. It will give you the current (ish. There is a bit of a time lag) glucose reading with a simple swipe and can reduce the need to finger prick. Brilliant for night time checks. Not only does it give you the level but it shows the direction of travel of levels so you can use this to head off highs and lows. I self funded in the very early days for 18 months but now get it on the NHS. For me it was an absolute game changer, and made the tips of my fingers very happy.

I have bombarded you a bit so I will stop and wait for the next questions from you.

Thank u for ur reply. And ur info. I have seen lots of different options but just don't know what to do. Its all alot to take in

 

[Inka]

Thank u for ur reply. It was such alot to take in and we were in and out of hospital in 2 days and sent home with a lot of info. My daughter and I have have been researching different things and when I asked her about the pump she said she wouldn't want people to see it when she's at dance. Hopefully I can change her mind x

Tell her my pump is rather lovely and I actually get it out to show people! Seriously! It lives in a soft waistband case under my clothes so - apart from the occasions I show it off - it’s totally invisible. I can wear it in a soft case on my leg too when I wear dresses. It’s very flexible - and means I can be more flexible with my life. It also makes me feel more normal because my basal insulin matches my needs so closely with the pump.

I take it off for ice-skating, swimming and some contact sports, so that’s another option if she chooses. It takes seconds to remove 🙂

 

[Darcysmun]

Oh I didn't realise u can remove it. As she does lyrical ballet and hip hop dance competitions. Well that was before lockdown and diagnosis. But she seems to be very sensitive to exercise and drops very low even after 10 mins of playing with the dogs. Will definitely look into this but I suppose like everything else it won't be getting a thing sorted until appoi are hup and running v v

 

[everydayupsanddowns]

Oh I didn't realise u can remove it. As she does lyrical ballet and hip hop dance competitions. Well that was before lockdown and diagnosis. But she seems to be very sensitive to exercise and drops very low even after 10 mins of playing with the dogs. Will definitely look into this but I suppose like everything else it won't be getting a thing sorted until appoi are hup and running v v

It depends on how long the sessions last - I always removed my pump for gym sessions (45-90 minutes) but kept it on, just turned right down for longer distance runs (60-120 minutes).

One of the benefits of a pump is that you can act ahead of time for planned activity, turning down basal insulin to a fraction of the usual amount, or switching it off entirely, so that you have less active insulin when the activity starts.

 

[SB2015]

Oh I didn't realise u can remove it. As she does lyrical ballet and hip hop dance competitions. Well that was before lockdown and diagnosis. But she seems to be very sensitive to exercise and drops very low even after 10 mins of playing with the dogs. Will definitely look into this but I suppose like everything else it won't be getting a thing sorted until appoi are hup and running v v

I remember my surprise at just walking into town impacting my levels. Darcy is in the very early stages and her team will still be working with you to bring her levels into normal range and to work out the correct dose of her insulins. This does take time and it is likely that she will be very sensitive to insulin. Is she using a half unit pen? This enables her to get smaller adjustments to doses.

Her levels will also depend on the amount of carbohydrates that she has eaten and this will take time to learn and find out how to adjust her insulin. This sounds complicated but it will really become easier, and it will not need to prevent her from doing any of her activities in the future. This lockdown will give her time to get many things sorted before she is back at school and back to her dance classes.

Take things a day at a time for now. Has she been asked to decide about the pump now? There are many advantages of using them and a lot of different options available to suit different individuals.

Keep coming back with the questions. We are here to help.

 

[SB2015]

PS
Some of them come with very nice colours.
I was tempted by one that was available in lime green!!

 

[Darcysmun]

We managed to attach the libre sensor today all by just reading the instructions. With lockdown we have been very nervous about not having our diebetic clinic but we are getting there. I'm constantly reading and taking notes it's all so much to try and learn but we will get there

 

[Thebearcametoo]

Glad you’re getting the hang of it. Your diabetes team will still be working so do email or phone them if you need to. We used YouTube for Libre videos when we tried it. I much prefer to see someone do it than follow written instructions.