Anyone with a type 1 diabetic child / teen.

[Foodtheif]

We’ve been diagnosed around two months now and I’m still so upset about it. Normally could cry at any point within seconds. So worried for her future and how she will cope in her teens. Even though she seems ok with it at the moment and has accepted it, I feel I’m doing worse than she is. I’m also petrified that my older daughter will get it too.

@Foodtheif my sons were both the same with their breakfast on injections, they would inject and then drop low and hypo, then they would shoot straight up, the insulin never matched the food speed, their dinners would sometimes also be the same and we would do two separate injections spaced apart which wasn't ideal.

They are now both on pumps and honestly it's made such a difference as you can change how the insulin is delivered - you can do it over a period of time so now we do it over 30 mins so it is a bit more spread out and you can also do a multi wave which gives an initial dose then another dose 45 mins after (of whatever time you choose)

They are on the libre and they have gone from having post meal huge spikes (around 20!! 😳) to basically being a flat line! It's pretty amazing! I was a bit reserved about the pump at first but my youngest son was getting so upset doing injections we swapped and haven't looked back and even his elder brother who was adamant he didn't want a pump as he didn't like the idea of it being attached to him has said how glad he is he's got it now. So I would say def something to consider!

Trouble is my daughter is usually back in range or very close to range by the next meal. But she spiked again after breakfast today and had bacon, cereal and full fat milk and a small yogurt. Hoped she wouldn’t go up to the twenties without the juice but she did. So confusing. We were told we can’t have a pump yet. Possibly in the future but then again my daughter really doesn’t want something else attached to her. They do seem quite big.

agnurse - glad you are not my educator because there is most definitely a genetic link to type 1 DM.

Seriously stay within your area of expertise and do not talk BS. It is not fair on struggling parents when you give such utterly WRONG information

I’m not T1 but a fair few people in my family are - my DM being one of them. Another is a DSN with T1.

Most have CGM but only a couple of them have pumps. My DM tried one but couldn’t get on with the sets so just injects, which she doesn’t mind.

I’ve been tested for GAD antibodies and it was negative but I wouldn’t fear developing T1 in the slightest. They all live very normal lives, especially since CGM became more widespread and accessible. There have been some hairy hypo moments (1.6mmol was the worst) but we are so aware of it that nobody has ever been hospitalised with it.

Plus we all carb count - the DC like to guess the units of insulin for meals

Your DD will be fine. Promise!

Some pumps are big. I currently have an accuchek expert but am changing to an omnipod which has no tubes and is really quite small. The level of control it gives you is immense. People who've been diabetes for years shy away from them, ie my mum says she would rather a younger person have it than her.

It could be that her fast acting insulin needs changing, there's lots of different types. Also look up dawn phenomenon (another thing that can only be helped by a pump) the way to check out if that's happening is by having a carb feee breakfast to see what happens to her levels then.

I don't eat breakfast but I know lots of people on my fb group really struggle with cereal and have taken a while to find one that doesn't spike.

Tomorrow we are going to try not having cereal and see what happens. She loves her cereal but has agreed to it today as she felt so rough with a tummy ache and feeling sick when she hit 23 😳. I hope she agrees again in the morning!

We are still having the breakfast spikes. Clinic said she should be in range again after two hours but after 4 hours she’s almost back in range. 😢. Hopefully they will do something to help that next time. They’ve increased her background insulin but she’s still running high in the early hours of the morning and therefore high at breakfast so I don’t know if increasing that more will help. Still not allowed a pump yet but to be honest my daughter finds putting the libre on (and off) painful so I don’t think I could change a pump every couple of days for her. I would like the control though as I hate seeing her spike into the 20’s after breakfast. I’m going to try a spoonful of cream in her milk (cereal) tomorrow as I’ve seen it’s supposed to stop the spike. She hates cream so I will have to do it discreetly and hope she can’t tell the difference!

Why aren't they letting her have a pump? So cruel. She seems to definitely be experiencing dawn phenomenon, you could wake up an hour early yourself and give her a couple of units to fend it off. Two hours to go back into range in unrealistic really.

Things I might have mentioned previously and forgotten:
Try a no carb breakfast, omelette? And see what happens
Read dr Bernstein's diabetes solution and a book called think like a pancreas
Follow 'let me be 83' on Facebook.
Try giving her her insulin a good 30-40 mins before eating, you'll be able to see on the libre when her levels start dropping.

Most diabetic people do spike with cereal and that's why they just don't have it.

Reading the Dr Bernstein book has been amazing for my husband, he's been T1 diabetic for over 20 years.

Hey I'm a type one and it's a steep learning curve (a never ending one it seems sometimes) but just learn to take it a day at a time and don't beat yourself up if you have bad days even the most seasoned diabetics have them they often have no explanation either
I agree the pump is the way forward so much easier to manage and no injections ask about the the pump ASAP as some areas have very long waiting lists and loads of hoops you have to jump through also ask about the libre I have one but I'm a bit meh about it you dd will still have to finger prick at times in the meantime see if you can get in a carb counting course it will make eating snacks a bit more manageable and depending on your daughters frame of mind try and encourage a lower carb diet if you want more info google dr Bernstein he knows his stuff and it makes sense
Good luck you won't need it though you sound like fab mum and your daughter can and will have a normal life she just needs time to come
To terms with it it's a massive shock I remember when I was diagnosed all I could think of were the complications and it freaked me out soooooo baldly but I got over it and do my best to look after my self sending hugs xx

The pump can help massively with spikes - we do a "super bolus" when my daughter is having a high carb breakfast - we give normal insulin plus 2 hours worth of basal (background) and then turn pump off for 2 hours, so she is having all of the insulin up front. Also bolus at least 20 mins before. However a lower carb breakfast will help - we have eggs, Turkey rashers, chicken sausages, small spoon of beans, wholemeal toast etc.
When my daughter was injecting she would always spike into the 20's. A lower carb breakfast/the pump/super bolusing has helped that.
Another thing I find is that if my daughter wakes high she tends to remain high for the day.
So getting a low waking blood glucose can start you off on a good footing for the day.
Hang on in there - this lifestyle isn't for the faint hearted x x. Xx

Keep fighting for a pump. You and your daughter will see huge benefits. You can program your background insulin in time blocks - my daughters insulin goes up at 5am to help with the dawn phenomenon for example and lowers at 8am as she gets up and is moving about.
The pump helps fine tune things and is very easy to get used to. Injecting is still good (and relatively hassle free) and some type ones have amazing control on injections but for teenage years the pump may just give you that extra control x

We tried the bolus 20 mins before and the cream in the milk trip and she still went up to 21. 😢. The other week she had eggs and went to 15. Guess she may have to have eggs on toast everyday. It won’t okease her at all. Hate restricting a 7 year old. 😢

Skip the toast and make her an omelette?

She wouldn’t eat an omelette for breakfast unfortunately. We’ve been told we can’t go low carb for any meals but I may ask again for breakfast. Anything she has just results in a spike.

They would say that 🙄 tell them unless they give her a pump you have no choice. A boy in my DD's class was diagnosed a couple of years ago and had a pump within a few months.

I knew very well one of the oldest and longest living type 1's in the world. Diagnosed before the WW2 he was one of the first patients RD Lawrence treated. He lived well into his 90's, had relatively few diabetic complications bearing in mind his age and length of time he'd been a type 1. He travelled, went to university married and a very responsible job. Basically he lived a pretty normal life and that was way before all the amazing technology that is now available.

Yeah. Just hard to convince her she wants a no carb breakfast. This is when I just wish it was me and not her. Do you eat low carb wrecktangled?

Grey - I love positive stories like that!

Hi Op, just wanted to say that I have been on the omnipod since last year and pumping has literally transformed my life so I hope you are able to get one soon for your dd. I highly recommend the omnipod as it is really small and discreet with no tubes and works great for me.

Good luck with everything, it’s a tough road but the tech we have now is truly amazing!

Just read the whole thread. Dh type 1 for 40years and still doing well had similar issues when he developed dawn phenomenon about 8 years ago. Consultant made him go on a pump . He wasn't keen to start with but now would never give it up. It's a game changer. Your daughter will get there and have a normal. She may need to plan a bit more. As she gets older get her to tell friend and tell them her hypo signs. Not always the same for diabetics. My kids have been brought up from a very early age knowing dads signs and where the orange juice his chosen hypo fodder is.D daughter started year 7 last summer and came home day 2 to tell me how one of new friends had a pump like Dads. A couple of weeks later she was getting her OJ post PE and we've just had her for a sleep over. I think I'm trying to say tell her friend it will help as it gets older and kids will accept it. DH started with metal syringes and pork insulin. In 40 years thing have moved so fast. Where will we be in 40 more😀

I have started the low carb but it's only been just over a week. I don't think anyone has to do it and I know of people who have great control not doing it but despite my hba1c being 6.3 (45) I was still up and down all the time. Anyway if your dd did it it would be going against professional advice (for now, I think it'll change). Either way a pump is going to be the best way of controlling things. I have an omnipod like pp and it's amazing. It hurts less than the libre to insert, doesn't have any wires and when I eat something (because I still have to bolus for protein and veg carbs etc) I just press a few buttons on the handset.

As an aside even eating a full range diet you could still make your dd treats that are low in carb. These blueberry 'muffins' are 3g carbs per cake and pretty tasty. She could even have it for breakfast

They look fab! Have you got a link to the recipe.

The on iPod is the one I think looks best. I know she wouldn’t want the ones with the tubes. However, they seem so complicated. 😢. Can imagine it failing when she’s on holiday or something and ending up in hospital. Nightmare. Will start talking about it more and trying to persuade my daughter that it could be good to try one.

Hi, they actually loan out spare pdms when you go on holiday just in case! Mine has failed occasionally and it has never needed a hospital trip so far, just a pod change and lots of fluids. It’s all very overwhelming at first but you will both get there.

Yeah. I feel like I’m just about (sort of) accepting it and feeling a little less overwhelmed. Don’t know if it would be a good idea or not at the mo but I guess there would be waiting times and stuff anyway.