Best CGM for kids

[Tom1982]

As above really? Jo is 4 and the first one we tried was rubbish and we had 4 fails in a week. But we really need to get one working.

 

[Lily123]

You could ask if Jo could try Dexcom as that is approved for ages 2 and up. And the new guidelines for children say that all should have access to rtCGM (Dexcom) as opposed to isCGM (Libre, Libre 2)

 

[Inka]

As above really? Jo is 4 and the first one we tried was rubbish and we had 4 fails in a week. But we really need to get one working.

Try Dexcom. I haven’t used it myself but I know a number of people who have used it and are very happy with it.

 

[helli]

I don’t think there is a “best” for everyone or every child.
I think you are asking which CGM is best for Jo.
I have tried 5 different CGMs. The one considered “the best”, Dexcom G6, was the least accurate for me and I thought the app was the most basic.

I recommend asking to trialling a few, do not expect them to be great for Jo because “most people“ say so and make sure you understand the limitations of CGMs such as being designed to be most accurate between about 4 and 10 mmol/l when levels are not chapinging rapidly (and this is the time to calibrate if you can).

 

[Thebearcametoo]

It’s worth chatting to your team about placement and what might have been the problems with the sensors. We’ve used a Libre and now a dexcom and had fails with both at different points but the dexcom is more accurate (the Libre was an older model and the newer ones are much improved). As above dexcom now should be available for NHS funding but it may not be immediate. We’ll likely get it approved at the next clinic but have been self funding up to now. There can be various reasons why sensors fail and with smaller bodies it can hard to find places to put them where they work well so talking through everything with someone who can give you a fuller picture is helpful and your team may be able to help you to trouble shoot. It may be that using it on the belly instead of the arm give better results or vice versa even if that’s not the recommended placement.

 

[Tom1982]

You could ask if Jo could try Dexcom as that is approved for ages 2 and up. And the new guidelines for children say that all should have access to rtCGM (Dexcom) as opposed to isCGM (Libre, Libre 2)

We need to sort something before school next year. The nursery are bloody useless. How would lunch times work? Do the teachers work out the carb values of dinners!? This’ll get messy.

 

[Lily123]

We need to sort something before school next year. The nursery are bloody useless. How would lunch times work? Do the teachers work out the carb values of dinners!? This’ll get messy.

You could ask if they can put you in touch with the company who supplies the food (Can’t remember what it is ) and they should be able to give you all the nutritional information. The nursery will need to have a teacher/teaching assistant who can be trained to do finger pricks and injections (I was diagnosed in Year 3 so a few years older but the same thing)

 

[Sally71]

We need to sort something before school next year. The nursery are bloody useless. How would lunch times work? Do the teachers work out the carb values of dinners!? This’ll get messy.

You’ll have to get someone trained up on how to do the insulin. By law now schools have to provide a member of staff who is willing to be trained to do whatever is necessary, this does not have to be the class teacher, can be support staff. Don’t expect them to do carb counting though, they will probably be too afraid to do it wrong so you’ll have to provide the carb count. Easy enough if you provide your child with a packed lunch. If you want her to have school dinners this is a bit harder, the council department who provide them should be able to give you the nutritional breakdown if you ask. This can be a bit of a minefield though so good luck!

 

[Tom1982]

You’ll have to get someone trained up on how to do the insulin. By law now schools have to provide a member of staff who is willing to be trained to do whatever is necessary, this does not have to be the class teacher, can be support staff. Don’t expect them to do carb counting though, they will probably be too afraid to do it wrong so you’ll have to provide the carb count. Easy enough if you provide your child with a packed lunch. If you want her to have school dinners this is a bit harder, the council department who provide them should be able to give you the nutritional breakdown if you ask. This can be a bit of a minefield though so good luck!

Blimey this is a bit of a minefield! To think, 5 months ago I had no idea what a carb was and a glucose was something to do with Lucozade

 

[Inka]

We need to sort something before school next year. The nursery are bloody useless. How would lunch times work? Do the teachers work out the carb values of dinners!? This’ll get messy.

A friend’s primary age child has a packed lunch and his mum counts it in advance for his TA.

 

[Sally71]

Blimey this is a bit of a minefield! To think, 5 months ago I had no idea what a carb was and a glucose was something to do with Lucozade

Yes we had a right palaver. Had to get forms filled in to prove the existence of medical condition and need for the information. Wasn’t allowed to fill it in myself, had to get someone medical from hospital team to do it. Had to do it 3 times and then get the school headmaster to phone someone up at the council department and give them a bit of a rocketing before they finally admitted that they had received the forms. Two ladies proudly came to school to present me with the carb counts for all the meals - but out of 4-weeks worth of menus for some reason they had only provided 3 weeks and 1 days worth and they had given me calories not carbs! (Oh well it all starts with a c, must be the same...). When I asked for carbs they looked completely confused and upset that I didn’t like what they had provided and said they would have to get someone to call me back but she was out of the office for the next two weeks so I’d have to wait. Luckily I’d been carb counting long enough by then to know that the numbers they had given couldn’t possibly be right, when I’d had time to think about it calmly I wrote a letter to the head of department explaining that my child has a serious medical condition and I asked for carbohydrate information because that’s what I need to calculate her insulin dose and I find it quite shocking that people who work for a department that deals with nutrition don’t know the difference between a calorie and a carbohydrate; calorie numbers are about 4 times bigger so if we had been very new to diabetes and just blindly put the numbers provided into my daughter’s pump she would have received a massive overdose of insulin and would probably have ended up being blue-lighted to hospital. It also seems that the whole request was not taken seriously because they had missed out four whole days worth of information and then claimed that they couldn’t help me further because someone was not in the office. The headmaster told me that they have the full nutritional breakdown available so why do we have to wait for one particular person to be in the office, surely anyone who can read can provide me with the information I want?! I said they should get used to this question because this is how diabetes is dealt with now and they will definitely get asked it again, and they need to take it seriously because what might seem like nitpicking or a silly mistake to them could actually have life threatening consequences for a child. After that for a while they did email me the full nutritional breakdown, a 20 page pdf of which I only needed one column but at least I could pick out the right numbers myself. I hoped that someone might have learned something... but alas, fast forward a few years and another diabetic child joined our school and it sounded like her parents were having the same rigmarole and not getting anywhere either. Sigh. I hope the relevant department at your end are a bit more switched on than ours!

 

[Tom1982]

Yes we had a right palaver. Had to get forms filled in to prove the existence of medical condition and need for the information. Wasn’t allowed to fill it in myself, had to get someone medical from hospital team to do it. Had to do it 3 times and then get the school headmaster to phone someone up at the council department and give them a bit of a rocketing before they finally admitted that they had received the forms. Two ladies proudly came to school to present me with the carb counts for all the meals - but out of 4-weeks worth of menus for some reason they had only provided 3 weeks and 1 days worth and they had given me calories not carbs! (Oh well it all starts with a c, must be the same...). When I asked for carbs they looked completely confused and upset that I didn’t like what they had provided and said they would have to get someone to call me back but she was out of the office for the next two weeks so I’d have to wait. Luckily I’d been carb counting long enough by then to know that the numbers they had given couldn’t possibly be right, when I’d had time to think about it calmly I wrote a letter to the head of department explaining that my child has a serious medical condition and I asked for carbohydrate information because that’s what I need to calculate her insulin dose and I find it quite shocking that people who work for a department that deals with nutrition don’t know the difference between a calorie and a carbohydrate; calorie numbers are about 4 times bigger so if we had been very new to diabetes and just blindly put the numbers provided into my daughter’s pump she would have received a massive overdose of insulin and would probably have ended up being blue-lighted to hospital. It also seems that the whole request was not taken seriously because they had missed out four whole days worth of information and then claimed that they couldn’t help me further because someone was not in the office. The headmaster told me that they have the full nutritional breakdown available so why do we have to wait for one particular person to be in the office, surely anyone who can read can provide me with the information I want?! I said they should get used to this question because this is how diabetes is dealt with now and they will definitely get asked it again, and they need to take it seriously because what might seem like nitpicking or a silly mistake to them could actually have life threatening consequences for a child. After that for a while they did email me the full nutritional breakdown, a 20 page pdf of which I only needed one column but at least I could pick out the right numbers myself. I hoped that someone might have learned something... but alas, fast forward a few years and another diabetic child joined our school and it sounded like her parents were having the same rigmarole and not getting anywhere either. Sigh. I hope the relevant department at your end are a bit more switched on than

Such a shame she’s going to miss out on little things like this. Already had to blow out a party because we where not sure how to go about it. Instead of getting upset I get angry. Spent the last 5 months like it! Sounds a bit odd but is there ever any support or anything for parents?

 

[Sally71]

You could ask at the hospital or online whether there’s a type 1 kids/parents group in your area, we used to meet up with some other families and it was nice for the kids to all be testing and injecting together so they weren’t different any more, and nice for the parents to be able to swap tips and have a bit of a rant with other people who actually understand. And if anyone’s pump alarm started going off all the parents would immediately be looking around to see whose child needed attention and how urgent was it!

Your daughter doesn’t have to miss out on things, you just develop tactics for dealing with them. What sort of party was it that you turned down, was it a family do or a kids’ party? If you talk to whoever is organising it they should be able to help you. Could you stay with her, help her to pick a plate of food which you carb count for her, and presumably you can go somewhere quiet to do her insulin. Then if they are giving out sweets and prizes and so on just bring them home for her to eat later when it’s easier to deal with. Probably a good idea to keep a closer than normal eye on blood sugars so that you can correct if necessary, but one day of less than good numbers here and there isn’t going to hurt her in the long run.

 

[Thebearcametoo]

With parties we had one of us parents go with to deal with the food to begin with. It gets easier to guesstimate carbs and to know what sort of reaction the excitement of the party will have on glucose numbers. I always work on the assumption that can correct later so just make an educated guess and let him have fun.

I found the first year after diagnosis really hard but now it feels much more manageable and I go with the flow. Our team did have parents meet ups pre pandemic. They haven’t restarted yet. I found this forum really helpful too. They also usually do a day of fun stuff every May with kids from the same age group so they can be around other diabetic kids and do some diabetes education as well as fun stuff. That’s also stopped for now.

 

[Bronco Billy]

Such a shame she’s going to miss out on little things like this. Already had to blow out a party because we where not sure how to go about it. Instead of getting upset I get angry. Spent the last 5 months like it! Sounds a bit odd but is there ever any support or anything for parents?

If you go to this page, https://www.diabetes.org.uk/how_we_help/local_support_groups you will be able to see where your nearest group is. You need to look for groups described as family groups rather than local or community/peer support groups, although that's not to say those groups won't be of any benefit for you.

As for parties, have a chat with your team and ask questions here. They can be difficult (isn't everything at first?) but they are manageable and the most important thing is that Jo has fun. It's best not to worry about blood sugars for a few hours.

 

[rayray119]

You could ask at the hospital or online whether there’s a type 1 kids/parents group in your area, we used to meet up with some other families and it was nice for the kids to all be testing and injecting together so they weren’t different any more, and nice for the parents to be able to swap tips and have a bit of a rant with other people who actually understand. And if anyone’s pump alarm started going off all the parents would immediately be looking around to see whose child needed attention and how urgent was it!

Your daughter doesn’t have to miss out on things, you just develop tactics for dealing with them. What sort of party was it that you turned down, was it a family do or a kids’ party? If you talk to whoever is organising it they should be able to help you. Could you stay with her, help her to pick a plate of food which you carb count for her, and presumably you can go somewhere quiet to do her insulin. Then if they are giving out sweets and prizes and so on just bring them home for her to eat later when it’s easier to deal with. Probably a good idea to keep a closer than normal eye on blood sugars so that you can correct if necessary, but one day of less than good numbers here and there isn’t going to hurt her in the long run.

I know this isn't the same thing. But im in a Facebook group in my area with other type 1s and which do meet ups and it's dififiity helped me feel less alone.

 

[Tom1982]

I know this isn't the same thing. But im in a Facebook group in my area with other type 1s and which do meet ups and it's dififiity helped me feel less alone.

Might be worth a bash but I ain’t on Facebook and all that. Good days and bad days I suppose. Long as she don’t miss out on too much it’s okay.