Hello all. New to this and very confused!

[Inka]

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???

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 🙂

 

[trophywench]

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!

 

[rebrascora]

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.

 

[Leadinglights]

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.

 

[trophywench]

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!

 

[Thebearcametoo]

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.

 

[Lily123]

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.

@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)

 

[Thebearcametoo]

@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.

 

[Lily123]

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

 

[rebrascora]

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!"

 

[Lily123]

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

 

[Bruce Stephens]

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.)

 

[Bruce Stephens]

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.)

 

[Lily123]

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

 

[trophywench]

@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.

 

[Lily123]

@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

 

[SB2015]

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.

 

[SB2015]

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.

 

[Lily123]

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

 

[Leadinglights]

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.