To think I should have been able to buy half a drink??

[Edenviolet]

Went out today and for a treat went to a cafe as dd1 and dd2 wanted a drink

Dd1 chose hers and dd2 decided she would like a creamy fruit type drink. Dd2 has type 1 diabetes so we went on the website to work out the carbs in a small drink, it was quite a lot so thought I'd get her half a small drink instead but this proved to be quite a problem
The first person said no when I requested exactly half of a small drink ( they could do it as all measurements are on the jugs etc). I asked why and was told 'no we can't do custom drinks" so I asked to see the manager and was told "no we can't do half" and "I don't know what to charge for half a small drink"

I suggested that perhaps half the cost of a small drink might be a good figure but was told again "no, we can't do it"
I explained again why we needed just half and said could I not just pay for a small drink but they just measure half instead. "No"again?

By this point dd2 was getting upset so I said "ok I will have a small drink and please can I have an extra cup?" To which they replied "no, just one cup" and I had had to then virtually beg for the drink to be split equally between two cups. Ridiculous

Yet again, dd has been upset and something simple like getting a drink has been complicated by diabetes and she is getting more and more negative about things due to incidents like this

Surely I should have been able to buy half a drink? Or at the very least a small one split into two cups without having to beg?!

Very few of the people working in the coffee shops locally to me have English as a first language, I wouldn't be surprised if half of the reason might have just been because they were not able to interpret a non-standard request.

Buy the drink and don't drink all of it or drink half yourself. Simple.

OP, please be careful making such an issue out of counting carbs exactly. I've had t1 for 30+ years and pumped for the last 11 or so, I do understand where you're coming from.

But an attitude of having to measure everything so carefully is incredibly difficult and does lead to a really unhealthy attitude to food. I went through similar restrictions as a child and had/have an eating disorder entirely related to diabetes and abusing insulin as a result - I am still having regular counselling for it thorough my diabetes team at hospital.

With what I know now, I would recommend best endeavours when out and about, and correcting as and when you can. Also, at 5, have the hospital team not recommended bolusing immediately after the meal, once you know what your DD has eaten? It would take the stress away and shouldn't have too much impact on sugar levels I think?

They told us we have to bolus before so that by the time the insulin starts working it coincides with the bg raising from eating, I'm so strict about trying to lower dds hba1c as I don't want her having complications later in life.

I'm very worried that by her early twenties she could start having problems as i had read somewhere that after 20 years is usually when things start to go wrong so I try to keep bg as within range as possible. Her target bg on pump is 6.5 and ideal range 5-10

I think you've had a hard time on here hedgehog.

I understand how it feels to try and make your child feel 'normal' but then end up highlighting the issue even more. Been there done that.

It's a learning curve, some days you win and some days you lose

I won't add to the ins and outs of what you could have done as you've had plenty of that already and I'm sure you will know what to do next time.

Op you are doing great. It is such a shame that society makes life tough for those with illnesses and disabilities. I see this as no different as them refusing to accommodate a wheelchair. I don't even agree with the poster who said they will be stocktaking their cups as surely they could have given you an actual glass rather than a paper cup? I can see why they could not sell you a half portion though.

I am sure in time you will find a way to make it all look less stressy for your dd though as I do think it is very important. Good luck, it can't be easy.

dear world

the op's child is 5, a 5 year old who has a pretty rubbish health condition to deal with. Yes, going for the 2 cups 1 drink is probably the best bet in the future however, can you honestly say you've never given your child a food based treat and that they've never wanted one?

love cathy

OP I think you were slightly unreasonable and then the staff were unhelpful when you were unreasonable.

Hedgehog - I'm not familiar with your back story but reading this thread through I would urge you to go back and talk to the diabetes team again, without dd there, about the longer term sustainability of the pump for her.

You seem (and I apologise if I've misunderstood) to be under the impression that you will need to count carbs exactly and precisely for the next however many years. My understanding (and it is very sketchy only) is that whilst you need to count to start with you should be able to get used to the pump and become slightly less regimented as time goes on. I think that your dd will struggle as she grows to take responsibility for such a precise regime as you are outlining now. The transition for kids with chronic disease from moving away from everything planned by parents to kids taking charge of their own health is a very challenging time and it can't be done all at once, over night at 16. Even over the next 5 years dd needs to start taking control of her own illness. It's the role of parents to stand guard and fight their battles with them but we can't control their lives to the last gram. The more precise you push dd to be, the more you run the risk of her going against you completely and with diabetes that's a dangerous game to play.

I sympathise very much with your position. The complications of diabetes are pretty terrible. There's no getting away from that. But the complications of ultimate non-compliance with insulin therapy are much worse and the complications of poor mental health in patients with chronic disease are pretty awful too.

I don't think you can raise dd in a neverending atmosphere of carb counting and expect her to remain immune from issues with food and ultimately non-compliance. I think you and the family need some more support with using the pump so that you can gradually let go a bit. Don't be afraid to go back to your diabetes team and tell them you are over-focusing on this aspect. They will have seen it before and they need to work through it with you to safeguard dd's longterm health which I know is quite rightly your priority.

Massive drip feed was the server didn't have English as a first language!

Oops posted too soon. The server probably didn't understand the two cups concept.

The pump will always require the same level of input. Now and as long as dd has it.

The background settings and insulin to carb ratios and correction factor will be adjusted as necessary as she grows etc but her blood sugar and grams of carbs to be consumed will always have to be put in before she eats/drinks anything with over 5g carbs in.

Most of the time we have to weigh the food, I'd for example it's a biscuit and the packet says x amount carbs per biscuit we don't then obviously have to weigh it but unless it's something she has regularly I can't know the carbs for everything.
The carbs and calls book is good but we still need to weigh things I can't always judge it by the picture

It sounds tough op

In a way it's a shame her portion sizes won't always stay the same as I dare say I'd learn them then but her requirements grow as she does for food and insulin so it's constantly changing

I went out for dinner with a young American (iirc) guy in Mexico City. He popped his little test kit on the table, read some readings, read the menu and decided what he could eat. Since there's no guarantee Mexican food's made the same in Mexico as in America, he tested three times during our meal. He was utterly brilliant - fuss-free, fully kitted out, and clearly very informed. He was in the middle of a big adventure travelling all over the place, on and off piste. He just stayed alert and got on with it. Didn't want to talk about diabetes, but the places we'd each been and what we were learning.

Just thought I'd tell you this in case all the doom-mongering was making you pessimistic!

(He would definitely have asked Costa to lend him a measuring jug )

Not all chains are unhelpful, a friend of mine regularly orders food at wetherspoons and customises it, even to the extent of changing the type of sausage on the mixed grill. It always amazes me how flexible their ordering system is.

I'm with Morloth on this one - there's no way I would let my 5 year old have one of those drinks. And for those arguing that it's fruit I don't believe that it's pure fruit without any added sugar or other artificial flavouring.

I've had type 1 for 25 years, and used a pump for the last 12.
Unlike what some others have said here, I still weigh pretty much everything at home, because guessing for things like bread and noodles and such like is just too prone to getting it far too off, and massively high or low blood sugar as a result of guessing it wrong is not a whole lot of fun, particularly in a situation where it could have been avoided.
So I guess I'm defending the OP, in that keeping close track of how much carbs a food contains has remained a priority.

But the main reason that I'm writing here is the OPs comment, later, about giving the insulin before the food is eaten, and that her daughter doesn't always eat.

Back when I was on injections, and not on fast acting insulin, I'd order in a restaurant, give the insulin - which with slower acting insulin should ideally have been 20 minutes before eating if my blood sugar was not too high or low in the first place - then wait for the food to come. And occasionally, after 20 minutes, the food hadn't come, but the insulin is already starting to work. After 40 minutes, the food still hadn't come, and I'm eating sweets and sugar so that my blood sugar doesn't sink too low, and I am not having any enjoyment whatsoever from this eating out malarkey... In fact, all i'm worried about is potentially passing out, and when the food finally does come I definitely can't enjoy it.

By giving her a bolus before she's eaten, without knowing for sure if/how much she will eat you are essentially re-creating that level of meal-eating stress at home. Sure, giving the insulin before the meal would give slightly better blood sugars, but if your daughter is at a stage where she will not necessarily eat , or won't all of what is being given her, you have raised the stress of the meal massively compared to eating and then, after that, giving an amount of insulin that corresponds to what was or was not eaten. It's not ideal, but pretty much nothing with T1 is ideal. Truly, you have to do what is least bad. And, if your daughter is not cooperating with meals, then insulin after eating IS least bad.

Back on the original topic. I've been in similar situations. Have always paid the full price for something, then either asked for a half of it - while paying the full price -, or got rid of half of it myself. In the long run, any other way has just been too much hassle.

It's a tough ride hedgehog - DD1 was diagnosed at 5 and is now 9, I'm still learning to walk the fine line between good control and not making her anxious about it. I was really uptight in the beginning, banned sweets and sugary stuff but soon learned that I can't do that when she started lying about having hypos in order to get sugary treats. Even her diabetic nurse accepts that sometimes you have to guesstimate and take the hit of a high blood sugar if they want a treat. It's rubbish but they are entitled to a normal day to day life and I found that when I got worked up, she got worked up about it and she ended up really anxious and like I said, lying about her sugars. We are a lot more laid back now but still have good control.

If there is an issue while we are out eating I try not to make a fuss and tend to deal with it discreetly away from my daughter. We've made carb counting fun for her as well, got her involved and put her maths skills to use. It's made it a but more relaxed. Hopefully that will come in time for you

For those saying I'm wrong to give a five year old such a sugary drink , it's not a regular occurrence in fact it's the second such treat in a six month period and before that she had some chocolate at Christmas o can literally count on one hand the amount of high sugar treats she has had in the last year !

People don't realise though things I see friends giving their dcs are just as high in sugar eg Muller corners, innocent smoothies are just a couple of examples

To put it into context the rest of dds food yesterday was plain soya yogurt and berries for breakfast, cashew nuts for a snack, crispbreads, chicken, cheese, salad and an apple for lunch, Costa drink in the afternoon, a small oat bar later in afternoon and salmon potatoes green beans and plain yogurt for dinner. Soya milk at bedtime and she only drinks water really the other times she's thirsty. She eats similar most days and is growing well and really doesn't have treats like this often

And I tend to find that the high carb stuff is a nightmare, even if you work out the correct dose and bolus for it. And with regard to the bolus before dinner, when DD1 is trying a new food for the first time we always bolus after just in case. Luckily it's the only time we have to do it because she's a good eater, if DD2 was diabetic it would be even more of a nightmare because she's so fussy!

No-one is criticising her normal diet, but giving a diabetic child that type of high sugar drink, even as a rare treat, can't be a good thing

No-one is criticising her normal diet, but giving a diabetic child that type of high sugar drink, even as a rare treat, can't be a good thing

Oh do shut up

It did her no harm, her blood sugar did not rise above 8.0 in the couple of hours after having it and was 7.4 just before she had it so it worked out fine and did her no harm at all as a rare treat and the correct dose of insulin meant all was well

Giving a child with diabetes a sugary drink+ insulin is no different whatsoever to giving a child without diabetes the same drink and letting their pancreas release the insulin

But Costa, the whole point of a pump is that they're so fine tuned that you can have high sugar things, and bolus for it and maintain good control. Obviously not every day, but no HCP I've ever spoken to about it would advocate missing out on occasional treats just because of diabetes.

No food is 'forbidden' it's just a case of managing it correctly