My 11 yr old grandson was diagnosed with Type 1 diabetes after becoming very ill with DKA just over a week ago. He's now home and our journey is underway. So far he's coping well and managing to do his finger pricks and insulin jabs. Thinking ahead I know he'd prefer a pump and to move onto continuous glucose monitoring. Any thoughts or advice would be greatly appreciated x
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- Thread starter JulieH
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PattiEvans
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Hi Julie and welcome. I am on both a pump and Libre sensors and yes, they do make managing diabetes so much easier! It might be a good idea for his parents and himself to talk to the Pedriatic team together regarding this. Meantime there's an active "Parents" section here and I am sure you will get lots of help there.
Inka
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Welcome @JulieH 🙂 I hope your grandson is recovering well from the DKA. That’s frightening, and a Type 1 diagnosis is always a shock as it seems to come out of nowhere. Taking one day at a time is key. Slow and steady.
There’s a great book called Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas that his parents and you might find helpful.
I’ll tag a few parents of Type 1s and they might have more advice @Thebearcametoo @Bronco Billy @Sally71
I have a pump and love it. It’s ideal for getting the right basal throughout the day and night, and can also give tiny boluses for meals, which is useful. I know one child who got a proper CGM (Dexcom) but had to push a bit for it. They love it though, and it makes things a lot easier for his parents.
There’s a great book called Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas that his parents and you might find helpful.
I’ll tag a few parents of Type 1s and they might have more advice @Thebearcametoo @Bronco Billy @Sally71
I have a pump and love it. It’s ideal for getting the right basal throughout the day and night, and can also give tiny boluses for meals, which is useful. I know one child who got a proper CGM (Dexcom) but had to push a bit for it. They love it though, and it makes things a lot easier for his parents.
Thebearcametoo
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Hi and welcome. It’s good to know what the options are out there but there’s no need to rush into getting a CGM or pump. His team will discuss it all and work out when the right time is. Right now it’s about data gathering and working out what ratios and basal he’s going to need. Injections and finger pricks are really good ways to manage diabetes. Pumps and CGMs can be even better but they can also have their drawbacks. My daughter is 11 and has had diabetes for 2 years. She’s mostly been on injections and finger pricks. She hated the Libre (which you can often get funded on the NHS) when we tried. She prefers dexcom (for the applicator) and we fund it through her DLA (which you can’t get until 3 months after diagnosis) and she has had a pump for the last 6 months but is currently on a break from it and back on injections. His team will talk to him about a pump and may suggest he starts one before he’s 12 just because of ease of funding but it varies on region as to which pumps are offered and that may in turn determine the best CGM to go for if you go down that route.
The early months after diagnosis are often difficult because of the amount of information you have to take on board and getting used to the new reality. It will get easier though.
The early months after diagnosis are often difficult because of the amount of information you have to take on board and getting used to the new reality. It will get easier though.
SB2015
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Welcome to the forum @JulieH Sorry to hear about your grandson’s s diagnosis, but glad that you have found us.
I am now on a pump and Continuous Glucose Monitor (cgm) which ‘talks‘ to my pump. It has made life easier for me, but it does take a bit of work.
I think in most cases they like people to get used to using injections first. As the pens would be our backup if a pump fails it is important to know how to manage with the pens. Sorting out the appropriate levels for the different insulins as well as learning how to make adjustments in response to his glucose levels all takes time. His team will work with him and his parents and take him through the changes over time.
I certainly recommend the book by Ragnar Hanas. It is clearly laid out, well referenced and is up to date with the latest tech developments.
Keep in touch and fire away with any questions that arise.
I am now on a pump and Continuous Glucose Monitor (cgm) which ‘talks‘ to my pump. It has made life easier for me, but it does take a bit of work.
I think in most cases they like people to get used to using injections first. As the pens would be our backup if a pump fails it is important to know how to manage with the pens. Sorting out the appropriate levels for the different insulins as well as learning how to make adjustments in response to his glucose levels all takes time. His team will work with him and his parents and take him through the changes over time.
I certainly recommend the book by Ragnar Hanas. It is clearly laid out, well referenced and is up to date with the latest tech developments.
Keep in touch and fire away with any questions that arise.
Sally71
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- Parent of person with diabetes
Pumps are not a magic fix-all, they have their own advantages and disadvantages. They are good because they can do much tinier doses and dose increments than pens so you can fine tune everything to a much greater degree which hopefully means blood sugars not bouncing around so much. For the basal (background) dose you can adjust it by the hour and therefore only change the part of the day you are having problems with and leave the rest alone, instead of injecting one or two doses of long-acting insulin which then affect you for the whole 12 or 24 hours. They have ways of temporarily increasing or decreasing doses to help with things like illness and exercise. BUT to get these benefits requires a lot of work and trial and error, sometimes it feels like I’m constantly fiddling with the settings on my daughter’s pump and never quite getting it right, and they have their own drawbacks. That said, I think very few people who have switched to a pump want to switch back, and we were lucky and got one only 8 days after diagnosis so don’t really know any different!
We had 4 years of finger pricks only and then invested in a Libre, which was an absolute revelation, having up and down arrows to see which way the blood sugar was moving and then a graph of the whole 24 hours, doing 8 or so finger pricks a day really does not give you the full picture! And last summer we switched to Dexcom which gives us alerts the blood sugar is going out of range, which is extremely helpful for her especially at school. I can see it on my phone too, which is handy overnight, maybe not so good when I’m not there to help her, but she’s 14 now and can get on with it fairly well by herself and she’s lucky and has a supportive school with some brilliant teachers and first aiders who really look after her. I don’t think I’d have wanted that function when she was younger! We also now have a pump which talks to the Dexcom so if she’s dropping low the pump will automatically switch the basal insulin off until she comes up again, which has saved several hypos and made most of the more severe ones less so, which is brilliant. It should also be able to automatically deal with highs, we haven’t upgraded to that yet though, really need to get our fingers out and do the training and decide whether we want to switch over, daughter didn’t want to change it at first but I think it would be useful. I think she’s starting to think that way too.
So it’s a lot for you to think about, for now you just need to get over the shock of the diagnosis and get your head around the basics, then talk to the medical team about pumps and things, they’ll be able to help. (I wouldn’t recommend going on one as quickly as we did, we’d barely had chance to get the hang of injections and weren’t doing carb counting yet, and then had to instantly learn carb counting and a whole different way of doing things, talk about brain overload I barely knew what day it was for a while!! We got there though because we had to)
Good luck 🙂
We had 4 years of finger pricks only and then invested in a Libre, which was an absolute revelation, having up and down arrows to see which way the blood sugar was moving and then a graph of the whole 24 hours, doing 8 or so finger pricks a day really does not give you the full picture! And last summer we switched to Dexcom which gives us alerts the blood sugar is going out of range, which is extremely helpful for her especially at school. I can see it on my phone too, which is handy overnight, maybe not so good when I’m not there to help her, but she’s 14 now and can get on with it fairly well by herself and she’s lucky and has a supportive school with some brilliant teachers and first aiders who really look after her. I don’t think I’d have wanted that function when she was younger! We also now have a pump which talks to the Dexcom so if she’s dropping low the pump will automatically switch the basal insulin off until she comes up again, which has saved several hypos and made most of the more severe ones less so, which is brilliant. It should also be able to automatically deal with highs, we haven’t upgraded to that yet though, really need to get our fingers out and do the training and decide whether we want to switch over, daughter didn’t want to change it at first but I think it would be useful. I think she’s starting to think that way too.
So it’s a lot for you to think about, for now you just need to get over the shock of the diagnosis and get your head around the basics, then talk to the medical team about pumps and things, they’ll be able to help. (I wouldn’t recommend going on one as quickly as we did, we’d barely had chance to get the hang of injections and weren’t doing carb counting yet, and then had to instantly learn carb counting and a whole different way of doing things, talk about brain overload I barely knew what day it was for a while!! We got there though because we had to)
Good luck 🙂
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Sorry to hear about your grandson @JulieH
Kids who live with T1 are so amazing and resilient, and learn to cope so amazingly with everything life throws at them. They are superheroes!
Speaking of which... not sure if your grandson would be interested, but this comic book was developed by people with diabetes, and healthcare professionals.
www.t1resources.uk
Kids who live with T1 are so amazing and resilient, and learn to cope so amazingly with everything life throws at them. They are superheroes!
Speaking of which... not sure if your grandson would be interested, but this comic book was developed by people with diabetes, and healthcare professionals.
Type 1 Origins - Revolve Comics
Superhero-style comic about type 1 diabetes diagnosis.
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