# Hello all. New to this and very confused!



## Tom1982 (Dec 30, 2021)

Hello all. Daughter was diagnosed with type 1 diabetes a few weeks ago. She’s 4 years old and taking to it like a champ! We are trying to get to grips with all the terminology and finding it confusing. If she has an injection of 2.5 Novorapid, to me that’s a dose of 2.5! How are some people talking about 200 something a day? Is that a different unit of measurement???


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## Leadinglights (Dec 30, 2021)

Welcome to the forum, It must be very worrying for you. There are a few parents on here so hopefully they will be along shortly to explain things and clarify.
I hope you are getting good support in these early days from a diabetic support team.


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## Lily123 (Dec 30, 2021)

Welcome to the forum @Tom1982. Some people use a lot more insulin a day as the needs for how much insulin changes like the wind. Is you daughter on fixed doses or do you count carbs to work out insulin?


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> Welcome to the forum @Tom1982. Some people use a lot more insulin a day as the needs for how much insulin changes like the wind. Is you daughter on fixed doses or do you count carbs to work out insulin?


Thank you. She’s currently on a fixed dose before meals and bed. (2.5) But I believe the plan is to carb count and set the appropriate dose ourselves in the near future. Looking at the figures would 1 unit per 10g of carbs sound right? I know everyone is different, but if she had a dinner that had 100g carbs in it (not likely I know) would that be 10 units in one jab!?


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## Lucyr (Dec 30, 2021)

I’d be amazed if a four year old could eat 100g carbs in one meal, but if they did and ratio was 1u for 10g carbs then yes the dose would be 10u


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Thank you. She’s currently on a fixed dose before meals and bed. (2.5) But I believe the plan is to carb count and set the appropriate dose ourselves in the near future. Looking at the figures would 1 unit per 10g of carbs sound right? I know everyone is different, but if she had a dinner that had 100g carbs in it (not likely I know) would that be 10 units in one jab!?


Your daughter had NovoRapid for her bolus dose (mealtime dose) and what insulin is she on for basal (bedtime)?


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> Your daughter had NovoRapid for her bolus dose (mealtime dose) and what insulin is she on for basal (bedtime)?


Levemir for bedtime (which, incidentally, she says stings?) 4.5 units for this one.


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## Tom1982 (Dec 30, 2021)

Lucyr said:


> I’d be amazed if a four year old could eat 100g carbs in one meal, but if they did and ratio was 1u for 10g carbs then yes the dose would be 10u


Haha okay bad example. Just trying to get to grips with the numbers. Cheers for the reply


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## Tom1982 (Dec 30, 2021)

Lucyr said:


> I’d be amazed if a four year old could eat 100g carbs in one meal, but if they did and ratio was 1u for 10g carbs then yes the dose would be 10u


Would it be unusual to have 10 units in one go? Or do some people do that regularly?


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## Lily123 (Dec 30, 2021)

1 unit to 10g carbs is usually a starting  point but because of your daughters age she may need less insulin than 1 unit to 10g carbs . Your diabetes team will help with starting on carb counting


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Would it be unusual to have 10 units in one go? Or do some people do that regularly?


I normally have 15u as about average and and I know others on this forum have more and some have less


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> I normally have 15u as about average and and I know others on this forum have more and some have less


In one go? At meal times?


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> In one go? At meal times?


That’s because everyone has different insulin needs and sometimes it’s more than 15 sometimes it’s less. Everyone needs different amount of insulin


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## Bruce Stephens (Dec 30, 2021)

Tom1982 said:


> In one go? At meal times?


I do. It obviously varies between people (some people use a lot more, or less). It also strongly depends on body weight so it's not at all surprising that a 4 year old would need much less!


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## Tom1982 (Dec 30, 2021)

Bruce Stephens said:


> I do. It obviously varies between people (some people use a lot more, or less). It also strongly depends on body weight so it's not at all surprising that a 4 year old would need much less!


So where we set the pen to 2.5 you would set the Novorapid pen to 15? Or 20? Do you still press the button and count to 10?


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> So where we set the pen to 2.5 you would set the Novorapid pen to 15? Or 20? Do you still press the button and count to 10?


I do as this is what I was told to do when I was first diagnosed, although I was only a few years older than you daughter then (I’m in secondary school)


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> I do as this is what I was told to do when I was first diagnosed, although I was only a few years older than you daughter then (I’m in secondary school)


Nice one. Did you decide not to have the pump and so on?


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## Bruce Stephens (Dec 30, 2021)

Tom1982 said:


> So where we set the pen to 2.5 you would set the Novorapid pen to 15? Or 20? Do you still press the button and count to 10?


Yes, exactly the same.


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Nice one. Did you decide not to have the pump and so on?


The NICE guidelines are extremely tight and wasn’t offered one  . Has your daughter been offered a pump?


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> The NICE guidelines are extremely tight and wasn’t offered one  . Has your daughter been offered a pump?


Yeah it’s been discussed and I think it’s the way we will go. But unbelievably Madame don’t want it!!!! She likes her pen


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Yeah it’s been discussed and I think it’s the way we will go. But unbelievably Madame don’t want it!!!! She likes her pen


Insulin pumps require a site change and changes of insulin vials every 2 or 3 days depending on the material of tubing or the Omnipod but I’m not sure how often a change for that is needed


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> Insulin pumps require a site change and changes of insulin vials every 2 or 3 days depending on the material of tubing or the Omnipod but I’m not sure how often a change for that is needed


Cheers for all the info. Really handy. I think I’d stick with the pens but it’s up to her. Did it take you long to get used to your jabs? Is it intrusive at school?


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Cheers for all the info. Really handy. I think I’d stick with the pens but it’s up to her. Did it take you long to get used to your jabs? Is it intrusive at school?


I do my injections in the medical room as some people in my classes are a bit judgemental and incase anyone is needle phobic and sees the needle although it’s 4mm


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> I do my injections in the medical room as some people in my classes are a bit judgemental and incase anyone is needle phobic and sees the needle although it’s 4mm


I take it P.E (or whatever it’s called now!) is still okay? Probably daft questions I know, also do you just eat whatever you want and adjust your insulin to suit or do you try and eat healthier?


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## nonethewiser (Dec 30, 2021)

Lily123 said:


> Insulin pumps require a site change and changes of insulin vials every 2 or 3 days depending on the material of tubing or the Omnipod but I’m not sure how often a change for that is needed



3 days for omnipod or sooner if preferred, met one guy who changed his every 2nd day as he had high insulin needs so needed to.


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## Leadinglights (Dec 30, 2021)

Tom1982 said:


> So where we set the pen to 2.5 you would set the Novorapid pen to 15? Or 20? Do you still press the button and count to 10?


You do seem to be very uncertain about how to go about things which is quite understandable at this early stage but it might be useful for you to have more discussion with your diabetes support team who should be able to answer the more specific questions you have about your daughter's care.


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## Tom1982 (Dec 30, 2021)

Leadinglights said:


> You do seem to be very uncertain about how to go about things which is quite understandable at this early stage but it might be useful for you to have more discussion with your diabetes support team who should be able to answer the more specific questions you have about your daughter's care.


Definitely will be doing that cheers. Only a couple of weeks in and I’d like to think we are doing well. More thanks to the missus than me, hence me trying to seat up now


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## Inka (Dec 30, 2021)

Sorry to hear about your daughter’s diagnosis @Tom1982 There’s a great book for Type 1s:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas

If you haven’t already got it, it would be useful. In the early days you’ll be in contact with your daughter’s team a lot, and things will gradually get easier. 

There are a number of parents here, including @Thebearcametoo @Bronco Billy @Sally71 and some  parents in a similar position to you with newly-diagnosed children.


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## Tom1982 (Dec 30, 2021)

Inka said:


> Sorry to hear about your daughter’s diagnosis @Tom1982 There’s a great book for Type 1s:
> 
> Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas
> 
> ...


That’s great I’ll get as many books as I can. Really helpful to know there are lots of people out there to talk to. It’s a lot to take in!


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> I take it P.E (or whatever it’s called now!) is still okay? Probably daft questions I know, also do you just eat whatever you want and adjust your insulin to suit or do you try and eat healthier?


PE is okay and because I have the Libre 2 depending on what that tells me my number is if I am in the 4s or 5s I have a few sweets to try and avoid a hypo. If I feel hypo in a lesson I tell the teacher and then I go to medical and another person from the class walks to medical with me


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> PE is okay and because I have the Libre 2 depending on what that tells me my number is if I am in the 4s or 5s I have a few sweets to try and avoid a hypo. If I feel hypo in a lesson I tell the teacher and then I go to medical and another person from the class walks to medical with me


Is a hypo a regular thing? People seem to talk about them like they are no big deal, but I’d panic like mad if she was having one now.


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Is a hypo a regular thing? People seem to talk about them like they are no big deal, but I’d panic like mad if she was having one now.


There are possibly 42 things that can affect BG. Hypos shouldn’t be seen as “no big deal”. The saying is “4 is the floor” meaning below 4 is hypo and in the 3s are normally fixed with just one lot of glucose (persistent hypos are the worst)I get a bit scared if I drop below 3 . But hypos are common. Hypos shouldn’t be seen as “no big deal” but at the same time you don’t want to starting panicking at 3.9


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> There are possibly 42 things that can affect BG. Hypos shouldn’t be seen as “no big deal”. The saying is “4 is the floor” meaning below 4 is hypo and in the 3s are normally fixed with just one lot of glucose (persistent hypos are the worst)I get a bit scared if I drop below 3 . But hypos are common. Hypos shouldn’t be seen as “no big deal” but at the same time you don’t want to starting panicking at 3.9


We had a 3.5 the other day and I nearly chucked the jelly babies across the room


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> We had a 3.5 the other day and I nearly chucked the jelly babies across the room


Was it your daughters first hypo? I’m glad I don’t chuck my hypo treatment across the room as it’s small cans of coke I would probably knock someone out


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## Tom1982 (Dec 30, 2021)

Lily123 said:


> Was it your daughters first hypo? I’m glad I don’t chuck my hypo treatment across the room as it’s small cans of coke I would probably knock someone out


Yeah it was Christmas Day and we got a bit carried away with presents and all that. Checked her with the finger pricker and meter and I just heard the missus shout “get the jelly babies QUICK” think I hulked the box in half  but glad to know 3s are fairly quick to resolve. 15 minutes later she was 5.2


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Yeah it was Christmas Day and we got a bit carried away with presents and all that. Checked her with the finger pricker and meter and I just heard the missus shout “get the jelly babies QUICK” think I hulked the box in half  but glad to know 3s are fairly quick to resolve. 15 minutes later she was 5.2


That’s good that her numbers came up quickly. Just make sure you don’t over do it on the jelly babies because her numbers may sky rocket if she has too many


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## Leadinglights (Dec 30, 2021)

Lily123 said:


> That’s good that her numbers came up quickly. Just make sure you don’t over do it on the jelly babies because her numbers may sky rocket if she has too many


It might be a good idea to get some small bags or pots so you can portion out the jelly babies specifically for hypo treatment or what ever you are going to use so they are not regarded as 'free for all' sweets and find somebody else has eaten then when they are needed.
I think people also use small cartons of fruit juice or 150ml cans of full sugar coke but those are perhaps not so good for a small child.


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## Tom1982 (Dec 30, 2021)

Leadinglights said:


> It might be a good idea to get some small bags or pots so you can portion out the jelly babies specifically for hypo treatment or what ever you are going to use so they are not regarded as 'free for all' sweets and find somebody else has eaten then when they are needed.
> I think people also use small cartons of fruit juice or 150ml cans of full sugar coke but those are perhaps not so good for a small child.


Good call. The boss has just done that. One other daft question…… for now! If you can just adjust your insulin dose to suit the food, why, on the food thread, do people have such naff meals???


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## Lily123 (Dec 30, 2021)

Tom1982 said:


> Good call. The boss has just done that. One other daft question…… for now! If you can just adjust your insulin dose to suit the food, why, on the food thread, do people have such naff meals???


There is another type of diabetes - T2 which is managed by diet where they have to limit the amount of carbs they eat. Type 2 is different because the body creates a resistance to its own insulin and can be put into remission in a majority of cases. Type 2 can be caused by genetics and has stronger genetics links than Type 1 (sorry if I offended anyone I tried my best with my explanation)


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## Leadinglights (Dec 30, 2021)

Tom1982 said:


> Good call. The boss has just done that. One other daft question…… for now! If you can just adjust your insulin dose to suit the food, why, on the food thread, do people have such naff meals???


The meals people with Type 2 who are dietary managed are only limited by their own imagination. 
I don't feel deprived by the low carb meals I have, what is not to like about meat, fish eggs, cheese, lots of veg and salads, strawberries and cream.


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## Inka (Dec 30, 2021)

Tom1982 said:


> Good call. The boss has just done that. One other daft question…… for now! If you can just adjust your insulin dose to suit the food, why, on the food thread, do people have such naff meals???





Tom1982 said:


> Good call. The boss has just done that. One other daft question…… for now! If you can just adjust your insulin dose to suit the food, why, on the food thread, do people have such naff meals???



Not naff, just different. Many members here are Type 2 not Type 1. Type 2 is a different condition and often needs dietary modification. 

Type 1s can eat the same healthy diet as others with the appropriate use of insulin


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## trophywench (Dec 31, 2021)

One man's meat is another man's poison as they say! - just because you may not enjoy what someone else eats, doesn't make it naff!  I don't suppose I'd get on too well with normal food choices were I suddenly dumped in an Asian household, or a vegan one.  I know very well that different religions eat different  things too - be it kosher (lovely bit of squirrel  etc) or halal - that ordinary British Christians haven't a clue about.

Some folk are allergic to things and can't eat them - nuts for instance.

As they also say - don't knock it till you've tried it!


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## rebrascora (Dec 31, 2021)

Just wanting to say "hello" and welcome.

Sorry to hear about your daughter's diagnosis. Whilst it is likely incredibly scary for you as parents, it is unlikely she will remember a life without diabetes so it will always be her "normal" which in some respects can make it easier than having to adapt to a diabetes diagnosis as a teenager say, but it is an enormous responsibility for parents with a child at such a young age so I really do feel for you. One of the advantages of getting it at an older age is that I am very aware of my body and can tell when I am having a hypo whereas your daughter won't have that awareness yet, so I can totally understand your worry over hypos. I know I naively thought that a hypo was something that might happen perhaps once or twice a year, but for me they are an almost daily occurrence. Mine are mostly very mild and have become more of an inconvenience rather than something to panic about, but the first few were really scary. Other people have more stable BG levels and might just have one a week or one a month or even less. The thing to understand with diabetes is that there is a huge variation in what is "normal". I think it is great that you are asking so many questions because comparing notes with others really helps you to understand that variation in normal and it changes even within an individual, so you are constantly having to adapt to the new "normal". It is a bit like playing a game where the rules and goal posts change every so often without warning. You just get the hang of how it all works and then suddenly it doesn't work like that anymore and you have to figure out new strategies to tackle the new rules. It can be a bit frustrating sometimes and you never get it right all the time, so don't feel like you have failed when things go wrong as they certainly will. Use those times as a learning experience. So your hypo the other day is a good experience in how to treat a hypo. Having hypo treatments closer to hand.... by the bed, in every room even the bathroom (hypos can result from a warm bath or shower). As @Leadinglights mentioned, having them portioned out into individual hypo treatment doses of 3 jelly babies or 4 Glucose tablets, so that you don't lose track of how many you have given her in the panic of the moment and so that those packets are off limits or not temping to any other children in the house finding a packet of sweets and eating them. 

As regards the Levemir stinging, yes it can sometimes and you might want to use that as a good argument for having a pump, because the pump only uses fast acting insulin and only injects really tiny amounts throughout the day and night. It would also be really helpful to you to have a Libre sensor so that it warns you when her levels are going low rather than having a panic when you finger prick and find they are already low. The system isn't infallible but saves a lot of finger pricks and can give you some peace of mind as regards detecting hypos before they happen, so that might be something to discuss with your team.

Anyway, just want to encourage you to continue asking lots of questions both here on the forum as well as with your diabetes team because the more you ask, the more you learn and knowledge is power.

Good luck to you both as parents and to your daughter who sounds like she is a star and handling it brilliantly.


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## Leadinglights (Dec 31, 2021)

As parents you may start to recognise behavioural changes which forewarn you of a hypo which you can pass on to other as to what to look for.
I had a colleague who would suddenly start to have jerky movements which we noticed before they were aware of it, it just needed us to say 'have some sugar in your coffee' and then they would realise. we had not realised that they were diabetic until we saw then injecting insulin before lunch. They always ate the food in a particular order.


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## trophywench (Dec 31, 2021)

Various work colleagues who sat facing me in the office, told me over the years that my mouth takes on a peculiar 'set' when I'm low - I dunno since I never sit looking at my face!


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## Thebearcametoo (Dec 31, 2021)

Hi and welcome to the club.

Insulin needs vary and at the moment your little one is probably still in the honeymoon phase and producing some of her own insulin so her needs for additional insulin are fairly small in terms of dose. My kid is now 11 and eating like a plague of locusts and going through puberty so often has 14 or 15 units but when first diagnosed (just before 9th birthday) 6 or 7 was much more common. They need what they need and you’ll get your head around it with time. Your team are there for you. Don’t be afraid to call out of hours if you have questions. Especially in those first few weeks there is no question too stupid. You have a lot to take in but it will soon become habit and you will be able to add ‘knowing the carbs of 93 foods’ to your party tricks. 


It’s common for kids of her age to be on pumps as it can help with the smaller basal needs but it’s fine to stay on injections. Check with your team if you can do the levimar straight from tue fridge. You’re not supposed to but for some people it can take the sting out (we used to do tresiba from the fridge as my kid said it was better). There’s the things you should do in ideal circumstances and then there are the ways you tweak them to get them to work. Dealing with diabetes with kids is a lot about being able to bend with the wind. You’ll get used to adapting how you do things.

Yes exercise, PE, etc is good. Being active it really great for kids. It will mean some adjusting of doses or extra snacks but your team will help you with that. 

Our hypo treatments to begin with were glucotabs or lucozade sport as the sugars in them are faster acting. Jelly babies work as does juice (we have small glasses that are and easy way to get the right amount but to begin with we used the scales to check amounts. Varying hypo treatments can be really useful so they don’t get bored and don’t forget to give a couple of crackers, some milk, or a plain biscuit or similar once she’s back above 4 to help stop another hypo. You will get used to dealing with them there will be some where you think ‘ is it time to call the ambulance’ (we’ve never had to call for help here but do if you’re worried). 

We’re here to support you as well as to answer questions. Your team will give you loads of support in the early weeks and months. We appreciate ours a lot.


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## Lily123 (Dec 31, 2021)

Thebearcametoo said:


> Hi and welcome to the club.
> 
> Insulin needs vary and at the moment your little one is probably still in the honeymoon phase and producing some of her own insulin so her needs for additional insulin are fairly small in terms of dose. My kid is now 11 and eating like a plague of locusts and going through puberty so often has 14 or 15 units but when first diagnosed (just before 9th birthday) 6 or 7 was much more common. They need what they need and you’ll get your head around it with time. Your team are there for you. Don’t be afraid to call out of hours if you have questions. Especially in those first few weeks there is no question too stupid. You have a lot to take in but it will soon become habit and you will be able to add ‘knowing the carbs of 93 foods’ to your party tricks.
> 
> ...


@Thebearcametoo if you don’t mind me asking what were the reasons for your kid being put on a pump? (I’m 3 years older and want to go on a pump but I’m not sure if I would meet the necessary guidelines)


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## Thebearcametoo (Dec 31, 2021)

Lily123 said:


> @Thebearcametoo if you don’t mind me asking what were the reasons for your kid being put on a pump? (I’m 3 years older and want to go on a pump but I’m not sure if I would meet the necessary guidelines)


Pump allocation varies a little according to age and location but with paediatrics it’s relatively easy to get funding for under 12s. Over 12s need to meet different criteria but our department will make a case if older kids want one.


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## Lily123 (Dec 31, 2021)

Thebearcametoo said:


> Pump allocation varies a little according to age and location but with paediatrics it’s relatively easy to get funding for under 12s. Over 12s need to meet different criteria but our department will make a case if older kids want one.


Oops yeah I forgot the age difference in funding. Kinda scared of asking the diabetes team


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## rebrascora (Dec 31, 2021)

Lily123 said:


> Oops yeah I forgot the age difference in funding. Kinda scared of asking the diabetes team



You shouldn't be scared to ask. The worst that they can say is "no". You should then ask why and can you have their reasons in writing. Then go away with those reasons and work out how you can negate them. It may be that you need slightly better time in range or a slightly better HbA1c or you need to attend a DAFNE course or whatever equivalent. Not saying those things would apply but once you know what their reasons are, then you can work on those areas and go back in 6 months or a year and show them what you have done to address their issues. Don't just take "No" for an answer. Turn that "No" into a "maybe" or a "Yes". They may surprise you and say yes first time though. 

There is a saying "Shy bairns get nowt!"


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## Lily123 (Dec 31, 2021)

rebrascora said:


> You shouldn't be scared to ask. The worst that they can say is "no". You should then ask why and can you have their reasons in writing. Then go away with those reasons and work out how you can negate them. It may be that you need slightly better time in range or a slightly better HbA1c or you need to attend a DAFNE course or whatever equivalent. Not saying those things would apply but once you know what their reasons are, then you can work on those areas and go back in 6 months or a year and show them what you have done to address their issues. Don't just take "No" for an answer. Turn that "No" into a "maybe" or a "Yes". They may surprise you and say yes first time though.
> 
> There is a saying "Shy bairns get nowt!"


True but my HbA1C is 53 and needs to be 8% which is 69 for a pump (which seems a very strange NICE guideline) and hypos that come on suddenly and without warning (which for me is true) but you’re right I shouldn’t be afraid to ask especially as a pump would be helpful as every day for about a month now my numbers randomly spike and if alter the insulin to carb ratio at dinner I go hypo and it’s before I take my basal insulin. Yesterday’s was the worst so far at 20.1, 5 units of NovoRapid later brought that down to 11.6


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## Bruce Stephens (Dec 31, 2021)

rebrascora said:


> It may be that you need slightly better time in range or a slightly better HbA1c or you need to attend a DAFNE course or whatever equivalent.


If they're going by the published guidelines I'd guess you'd need worse results not better. (And there'd be no point in cheating since probably you need worse results even while trying hard to get better ones.)


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## Bruce Stephens (Dec 31, 2021)

Lily123 said:


> True but my HbA1C is 53 and needs to be 8% which is 69 for a pump (which seems a very strange NICE guideline) and hypos that come on suddenly and without warning (which for me is true) but you’re right I shouldn’t be afraid to ask especially as a pump would be helpful as every day for about a month now my numbers randomly spike and if alter the insulin to carb ratio at dinner I go hypo and it’s before I take my basal insulin. Yesterday’s was the worst so far at 20.1, 5 units of NovoRapid later brought that down to 11.6


Worth asking. If I'm reading the criterion correctly it looks like there's a reasonable argument: you're maintaining good HbA1c, but in doing so you're getting nasty hypos. And spikes (which are also recognised as bad, though not mentioned in this criterion).

And as @rebrascora says, don't regard a rejection as definitive, especially if your team seems sympathetic. (Several speakers at the diabetes tech conference made that point.)


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## Lily123 (Dec 31, 2021)

Bruce Stephens said:


> Worth asking. If I'm reading the criterion correctly it looks like there's a reasonable argument: you're maintaining good HbA1c, but in doing so you're getting nasty hypos. And spikes (which are also recognised as bad, though not mentioned in this criterion).


Unfortunately yes with the spikes. Especially as with the spike in the evening I’ve tried everything to stop it but I’ve run out of ideas. Also when I have appointments every 3 months on the two days they run the diabetes clinic I haven’t seen anyone with a pump


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## trophywench (Dec 31, 2021)

@Lily123 - many regions decided a long time ago to provide as many children as possible with pumps as a priority - wouldn't know if ours does it or not, as never been treated in a paediatric D Clinic - only adult ones, where yes we did have to meet guidelines BUT!! the most important thing adult or child is to have a pro-active consultant who recognises it's the best form of treatment.  Of course, for children (and in this context, you aren't an adult until you're 19) it has to be the thing the parents want since they need to fully understand pumping and the intricacies thereof.


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## Lily123 (Dec 31, 2021)

trophywench said:


> @Lily123 - many regions decided a long time ago to provide as many children as possible with pumps as a priority - wouldn't know if ours does it or not, as never been treated in a paediatric D Clinic - only adult ones, where yes we did have to meet guidelines BUT!! the most important thing adult or child is to have a pro-active consultant who recognises it's the best form of treatment.  Of course, for children (and in this context, you aren't an adult until you're 19) it has to be the thing the parents want since they need to fully understand pumping and the intricacies thereof.


I don’t think my parents are aware that pumps exist. I know that sounds slightly ridiculous since I’ve been T1 for 6 years and I have the Libre so it may be worth asking


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## SB2015 (Jan 1, 2022)

Welcome to the forum @Tom1982 

It is a steep learning curve at the start, and I am glad that your daughter is taking it in her stride.  

You mentioned that your team have given you fixed doses at present and will be introducing carb counting so that you can then match the insulin to the amount of carbs your daughter eats.  Each of us have our own ratios that we work out, but 1 unit of insulin to 10g of carbs is a common starting place. 

Because those of us with T1 are able to adjust our insulin doses at each meal, we can choose what to eat and we are just encouraged to make healthy choices.  For those with T2 they may be managing their condition by diet alone, and then need to control the amount of carbs that they eat to achieve appropriate glucose levels.  Each of us has to find what works for us, and sharing ideas can be helpful to others.

 Keep in contact with your daughters specialist team and they will work with you step by step.  Do ask any questions that arise on here.  Nothing is considered silly.  just ask.


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## SB2015 (Jan 1, 2022)

Lily123 said:


> I don’t think my parents are aware that pumps exist. I know that sounds slightly ridiculous since I’ve been T1 for 6 years and I have the Libre so it may be worth asking


Hi @Lily it is certainly worth asking.  
If you go down that route it would be worth starting a new post in the tech section to find out more info About the pumps that are available in your area.  This varies.


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## Lily123 (Jan 1, 2022)

SB2015 said:


> Hi @Lily it is certainly worth asking.
> If you go down that route it would be worth starting a new post in the tech section to find out more info About the pumps that are available in your area.  This varies.


I’ll start a new thread. The awkward bit is I live in to a different county to the hospital I go to


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## Leadinglights (Jan 1, 2022)

Lily123 said:


> I’ll start a new thread. The awkward bit is I live in to a different county to the hospital I go to


That can cause all sorts of issues, a friends parents lived in a different county from the GP surgery as the border ran through the middle of the village and it was a nightmare when they needed to organise home care for them. There was a chasm in the road.


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## Lily123 (Jan 1, 2022)

Leadinglights said:


> That can cause all sorts of issues, a friends parents lived in a different county from the GP surgery as the border ran through the middle of the village and it was a nightmare when they needed to organise home care for them. There was a chasm in the road.


A chasm in the road quite scary then. The hospital is the specialist centre for literally everything medical in that county and the reason I go there is the nearest hospital in this county most of it closed in about 2007


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## helli (Jan 1, 2022)

SB2015 said:


> Each of us have our own ratios that we work out, but 1 unit of insulin to 10g of carbs is a common starting place.


I don't want to derail or confuse this thread but given doses tend to be much smaller for children, is this the starting point for a 4 year old?
I have no idea but wondered if it was appropriate in this case.

I am smaller than most adults and my ratio is more like 1 to 15 (I started on 1 to 20 as an adult)  so I wondered if it was my size or just another example of  my weirdness.


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## SB2015 (Jan 1, 2022)

helli said:


> I don't want to derail or confuse this thread but given doses tend to be much smaller for children, is this the starting point for a 4 year old?
> I have no idea but wondered if it was appropriate in this case.
> 
> I am smaller than most adults and my ratio is more like 1 to 15 (I started on 1 to 20 as an adult)  so I wondered if it was my size or just another example of  my weirdness.


Good point HellI, and doses will indeed be smaller for smaller people.  Thanks

@Tom1982 it is really important to work with your team, and they will work with you to work out what your daughter needs.  None of us can take other people’s figures as we are all different, and our doses may change through the year as well as year by year.


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## trophywench (Jan 1, 2022)

I live in Warwickshire but both GP and hospital are in Coventry, ie West Midlands.  Was awkward to begin with as Roche kept sending the pump consumables bills to Warks county council who unsurprisingly wouldn't pay em!  It is all governed by where your GP surgery is, round here.


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## Lily123 (Jan 1, 2022)

trophywench said:


> I live in Warwickshire but both GP and hospital are in Coventry, ie West Midlands.  Was awkward to begin with as Roche kept sending the pump consumables bills to Warks county council who unsurprisingly wouldn't pay em!  It is all governed by where your GP surgery is, round here.


Bit awkward with Roche sending the bills to the wrong council!


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## Sally71 (Jan 5, 2022)

Lily123 said:


> Bit awkward with Roche sending the bills to the wrong council!


We live in Derbyshire but are under a Nottingham hospital and it hasn’t caused any problems with pumping.  You need the hospital team to set up the account with the pump company so they will tell them where to send the bill.  If you’re lucky and your hospital is pro pump like ours it might be easier than you think to get one, good luck!


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## Lily123 (Jan 5, 2022)

Sally71 said:


> We live in Derbyshire but are under a Nottingham hospital and it hasn’t caused any problems with pumping.  You need the hospital team to set up the account with the pump company so they will tell them where to send the bill.  If you’re lucky and your hospital is pro pump like ours it might be easier than you think to get one, good luck!


I live in Hertfordshire but the hospital is in Buckinghamshire.


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## Sally71 (Jan 5, 2022)

@Tom1982 i'm a bit late to this one but welcome to the forum! Please don’t get hung up about how much insulin your daughter needs, she needs however much works for her and as she grows and her honeymoon period ends her doses will increase, certainly when she hits puberty they will!  I hope you can start carb counting as that will give your daughter much more freedom to eat whatever she likes.  As a guide, at age 6 my daughter's ratio was 1:18 and she was only using a total of 20 units of insulin in the whole 24 hours (basal and bolus)  Now she's 15 and is on a ratio of 1:8 and uses anywhere between 55 and 70 units in 24 hours I think.  Which is a lot compared to some type 1s but it's what works for her.  You do whatever you have to do to try to keep the numbers in range.  Also don’t be afraid of hypos - most of them are not bad as long as you deal with them straight away.  Our DSN once said that if you never have a hypo you are probably running the blood sugars too high, but at the same time if you're having them every day then that probably means some adjustments need to be made.  It's a very fine balance and impossible to get right all the time!  Good luck


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## trophywench (Jan 5, 2022)

In my case, it was the DSN's fault - because she knew I lived in Warks she made the cabinet decision the answer must be Warks council and told Roche that, instead of bothering to check my medical record.  Utterly ridiculous, because had my GP been in Warwickshire I would never have been referred to the D clinic at Coventry hospital - it would either have been Nuneaton hosp or Warwick hosp.


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## Lily123 (Jan 5, 2022)

trophywench said:


> In my case, it was the DSN's fault - because she knew I lived in Warks she made the cabinet decision the answer must be Warks council and told Roche that, instead of bothering to check my medical record.  Utterly ridiculous, because had my GP been in Warwickshire I would never have been referred to the D clinic at Coventry hospital - it would either have been Nuneaton hosp or Warwick hosp.


I thought they had to check the medical record?


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## trophywench (Jan 5, 2022)

You would have assumed so - but since I've never worked for the NHS I really wouldn't know!!  It was just a mistake, anyway.


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## Lily123 (Jan 5, 2022)

trophywench said:


> You would have assumed so - but since I've never worked for the NHS I really wouldn't know!!  It was just a mistake, anyway.


I hope it didn’t take them too long to sort it?


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## Tom1982 (Jan 5, 2022)

Sally71 said:


> @Tom1982 i'm a bit late to this one but welcome to the forum! Please don’t get hung up about how much insulin your daughter needs, she needs however much works for her and as she grows and her honeymoon period ends her doses will increase, certainly when she hits puberty they will!  I hope you can start carb counting as that will give your daughter much more freedom to eat whatever she likes.  As a guide, at age 6 my daughter's ratio was 1:18 and she was only using a total of 20 units of insulin in the whole 24 hours (basal and bolus)  Now she's 15 and is on a ratio of 1:8 and uses anywhere between 55 and 70 units in 24 hours I think.  Which is a lot compared to some type 1s but it's what works for her.  You do whatever you have to do to try to keep the numbers in range.  Also don’t be afraid of hypos - most of them are not bad as long as you deal with them straight away.  Our DSN once said that if you never have a hypo you are probably running the blood sugars too high, but at the same time if you're having them every day then that probably means some adjustments need to be made.  It's a very fine balance and impossible to get right all the time!  Good luck


Thank you very much for the reassurance. I think we are doing okay. Well, the missus and daughter are. Not so sure about me! We have been practicing carb counting and it’s a bit more work but it’s not too bad at all. Hopefully they’ll let us crack on with that soon. One step closer to getting a pump which I think she’ll be happy with


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## Lily123 (Jan 6, 2022)

Tom1982 said:


> Thank you very much for the reassurance. I think we are doing okay. Well, the missus and daughter are. Not so sure about me! We have been practicing carb counting and it’s a bit more work but it’s not too bad at all. Hopefully they’ll let us crack on with that soon. One step closer to getting a pump which I think she’ll be happy with


Do you know which pump she’ll be getting?


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## Tom1982 (Jan 6, 2022)

G


Lily123 said:


> Do you know which pump she’ll be getting?


ot a meeting with a consultant next week. I assume that’s the kinda time that’s all discussed? Well I hope so. Poor sod is not enjoying the jabs a my all.


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## Lily123 (Jan 6, 2022)

Tom1982 said:


> G
> 
> ot a meeting with a consultant next week. I assume that’s the kinda time that’s all discussed? Well I hope so. Poor sod is not enjoying the jabs a my all.


I hope being on the pump helps your daughter,some hospitals will only have one or two pump choices or others will have 5 or 6 pump choices.I think we all have days when we think negatively about having to do injections.


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## Tom1982 (Jan 7, 2022)

Lily123 said:


> I hope being on the pump helps your daughter,some hospitals will only have one or two pump choices or others will have 5 or 6 pump choices.I think we all have days when we think negatively about having to do injections.


Is there a mental aspect to all this? Didn’t even think of that side of it. Does it get you down over time?


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## Lily123 (Jan 7, 2022)

Tom1982 said:


> Is there a mental aspect to all this? Didn’t even think of that side of it. Does it get you down over time?


I think it’s more that after a while it becomes second nature but everyone must have at least one moment where they think why it was them and not someone else. It’s normal.If your daughter ever struggles their will be a psychologist as part of her diabetes team


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## Sally71 (Jan 7, 2022)

Tom1982 said:


> Is there a mental aspect to all this? Didn’t even think of that side of it. Does it get you down over time?


The relentlessness of it can be hard sometimes, you can never ever have a day off and you do sometimes wish you could just sit down and eat and not have to do sums and insulin all the time!  It gets better though, we have been doing this for 9 years now and it’s second nature most of the time, the days where you can’t be bothered/can’t think any more get less often.

Be aware that pumps are not a magic fix - they take a lot of hard work.  But they do have many advantages, one cannula insertion every 2-3 days instead of 4 injections per day and you can fine tune things much better than with injections so hopefully achieve better control.  I hope you and your family find the right solution for you.


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