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.

Although obviously check with your team first.

She came out of school in the 20’s again today. I think her carb ratios need changing at breakfast and lunch now. Maybe her lantus needs increasing too. Will ring the team later.

Ouch. Yes it needs sorting ASAP. Also worth checking ketones if she's having prolonged highs

How old is she? Sorry, I have read the whole thread but missed this...

7 Maggie

Thanks Wreck.

Food sounds like she is coming out of the honeymoon period. It will take time to get the levels right.
Keep in regular contact with her Diabetes Specialist Nurse so they can titrate the doses up to match what she eats rather than making her low carb.

Re libre sensor being painful to come off, are you using some baby oil to loosen the adhesive? Might help.

I really think she is now. I will share the libre data with them in the morning and see what they think. She did look rough this evening. Poor baby. Yes, she’s 7, almost 8. I hadn’t thought to check keystones but will do that tomorrow. Does that mean she’s ill if she has keytones?

We have a spray to help get the libre off but she still finds it painful. Another reason why she doesn’t want a pump!

Not necessarily but high blood glucose for a prolonged period can cause ketones which can obviously become serious very quickly. Its probably fine but should definitely check. I had really high ketones the other day despite being hypo that afternoon. They were 5.3 so I got myself to a&e but had caught it early enough not to need an admission.

Have you tried cavilon spray under the libre?

A brown steroid inhaler lightly misted over skin before using a sensor helps to calm it down hugely we nearly gave up our cgm then tried this and it was a life changer

I can’t remember the name of the spray we have. We don’t have anyone with inhalers in the house unfortunately. Just checked ketones and they are fine. Freaked me out at first as started off high and then counted down to 0.0. Phew!

That's good news!

Do some people just spike no matter what? We’ve upped her mantis and she’s now having double what she was a few weeks ago. This has made the nights good and she’s generally in range and if not she’s only just out of range - around 10 mins so I’m happy about that as she was going hyper and then having a correction and then hyper again on waking. I’m not sure if that could be increased anymore - think she may end up hypo in the night if that was increased anymore. However breakfast she is still in the 20’s and lunch is normally high teens after eating. She is in range again by lunch and shortly after coming home from school but I really want to stop the spikes. We have increased her fast acting ratios too but no difference. 😢

I’ve tried blousing 20-30 mins before breakfast but that doesn’t make any difference. She’s had yogurt first as I read the fats in it will slow the absorption of the carbs and slow down a spike but that doesn’t help either. A spoon of Nutella was also tried for the same reasons as the yogurt but that was a no go. The other day she had bacon and eggs with a slice of toast - only 19 carbs - still spiked to the 20’s.

Any advice?

I don't know if you've already spoken to the doctor but I split my lantus. They don't always do it as it's not licensed to be taken to split however lots of people are advised to take it this way. My lantus is 19 units at night and 34 in the day time. If they're reluctant to do this, it would be worth seeing about switching to another long acting. The spikes could be either the long acting is wrong or the short acting...so I would advise a food diary very detailed of times, what she had, how much. I would be speaking to her nurses about it as this shouldn't be happening. It might be her ratio of short acting is wrong at certain meals. I'm on 1-10g every meal other than dinner where I'm on 1-7g. She might need a higher ratio at breakfast, there are apps to calculate this but again all I would say is speak to her nurses or consultant. She's going to start feeling rough with swinging high to normal all the time so would definitely recommend keeping a diary so they can see what's happening. Good luck.

Thanks. I have spoken to them and they adjusted it to what it is now which is better at night but no different during the day. I will speak to them at the next clinic which isn’t far away.
Do you think long acting is ok as her nights are ok? I’m thinking it’s more her fast acting but then she’s back in range for the next meal which is what they seem to be looking for.

I do keep a diary but they’ve never asked to look at it or what she’s eating.

I did the DAFNE course (which I'm fairly sure they don't offer as often anymore, I can't remember criteria but I think you have to have been diagnosed a year and be over 18, not sure if parents can do it but maybe worth an ask if you are interested. I found it extremely useful) and we were encouraged not to test after meals because they said you'd be testing the food not your sugars. So potentially that's something to think about if you're worried about spikes, if they're not too worried about them that may be why. I have to check the spikes now as I'm pregnant but prior to bringing my sugars in line with what they like them to be before ttc, I almost never checked after a meal. I know that generally I did used to spike quite high (in the 15s) but would be back in range before my next meal. My issue now is of course that I don't spike high but am more likely to dip low so its either one thing or another. They may well consider that it's better for her to have this spike than drop low if she's at school at those times?

@Foodtheif Sounds like you are having a really tough time

DD is now 10; diagnosed just before her 9th birthday. I posted way back in March or something (at the beach; she'd just had a muesli bar before going body boarding)! She is just coming out of her honeymoon now, after 16 months, and her BSL is a bit wild at the moment as a result. I am definitely not getting as much sleep as previously. We've just started using a MiaoMiao as well as the libre (not funded here unfortunately) and I hope that will improve things.

We are in NZ so things might work a bit differently to the UK but I wonder if you've had any luck getting your diabetes team to look at her ratios? We go through periods where they need to be adjusted several times over a couple of weeks. DD has basal (lantus) and bolus (novorapid). The novorapid is taken at a different for breakfast In her case 1:10) to later in the day (1:20). Almost never has cereal now though - even the lower-carb ones seem to have a high GI which makes dd spike. She likes French toast made with a very seedy bread that has 15.7g of carbs for 2 slices served with sugar-free maple syrup & cream (and bacon). We also make low-carb pancakes or waffles. Check out the DietDoctor website for low carb recipes. Should say that we eat sort of lower-carb rather than really low (dd has 30-40g per meal). It just reduces the spikes.

What do you do at lunchtime? Does your dd inject? It's so hard! And they really are great at coping.

I've been carb counting since day 1, but am currently doing an online course through the amazing Type 1 Family Centre in Perth (Western Australia). T1 kids there are very lucky!!

CyberCarbs

Please do PM me if you want to. It's almost harder for the parent than the child.

PS - sleepovers - could your DD take sugar-free sweets or popcorn with her? Mine takes sugar-free marshmallows & hot choc to Cubs when they have campfires

@Foodtheif As @LostInTheColonies says, you can sometimes need to keep making adjustments, and the amount of increase in insulin can be quite surprising when they are newly diagnosed and growing. My DS takes around 1200% (12 times) the total daily dose that he was on four years ago. If she is not coming down by herself after 2 hours, it's not a spike. Can you talk to your team about a pump or trying a different long acting? Levemir isn't amazing but you can split it so possible to fine tune a little bit more. Degludec (Tresiba) seems to have a flatter profile and works better for lots of people.

They did mention the coming down in 2 hours but it’s more like 3. Think previously she wasn’t coming down by the next meal so we have had some improvement. I don’t really want to change her mantis dose as it seems perfect at the moment. She has a lovely straight line all night these days. I think I will suggest her fast acting to be adjusted again. Just don’t want her having lows. I also don’t want her spiking to the late 20’s. I know a spike is inevitable but want it to be a smaller one.

Sugar free treats are a good idea but she can’t go to sleepovers anymore. Not until she can care for her own diabetes which is going to be a while away! Sleepovers and play dates are the things she misses the most.

Have you done any testing of her background insulin e.g. by giving her breakfast a lot later one day? If she is going up in the mornings without much food it may be that she has "foot to floor" - my DS rises without food in the morning so need more insulin (higher basal rate on his pump) during that period.

She’s normally in range until she’s eaten and then she goes straight up. Even if she’s barely had any carbs. This morning she didn’t start rising for nearly an hour after she started her breakfast and she’s in range all night so I think her basal must be ok?