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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Anyone with a type 1 diabetic child / teen.

245 replies

Foodtheif · 09/02/2019 17:53

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.

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Batqueen · 13/08/2019 23:15

There is so much to get your head around initially that adding a pump in straight away may be too much but it’s great that you are already thinking. (FWIW my mum tried to persuade me to get one straight away and it took 5 years to get me to agree to it because nothing else worked for me, it’s another big psychological adjustment). Type 1 is such a drastic lifestyle change which is what people don’t realise. So you can’t just not face it for a day or two which at the beginning is so hard before anything becomes second nature.
You are doing an amazing job, it will get easier.

Foodtheif · 24/08/2019 18:05

We let her have a sleepover last night at our house as she isn’t able to go to any of the others. Unfortunately it didn’t go as she planned and I could see she felt so sad. She had two other friends here and they hit it off massively and she felt left out. They kept wanting snacks which was awkward as if they are hungry they need to eat but her bloods were in the 20’s nearly all day so it was difficult for her. The other two also brought tons of sweets with them that they were able to share and she could only have one. I then said that theycouldnt have any more as it was unfair and they weren’t overly happy. No one wanted to watch the dvd that she wanted to watch (although that’s not diabetes related so would have happened anyway!) Something I thought would be nice for her and she’d enjoy ended up a bit of a nightmare. My poor girl.

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AbsentmindedWoman · 24/08/2019 20:04

How old is she? Don't know if I missed that?

I'm sorry the sleepover didn't go as planned. I'd try again with just one friend to start with, at some point. Maybe try some good low carb baking recipes and have some home made treats in they could munch on during the movies?

I'm 23 years into type 1 diabetes, diagnosed at 11. Switched to a pump over three years ago and it is a REAL game changer!

Virtually everyone I know is initially hesitant about the idea of being connected to the pump all the time, which is in part why I didn't decide to fight to get a pump for so long - but honestly you adjust very quickly and the payoff from the pump is your life is so huge. Your life is easier. You feel better physically and mentally.

How are you doing on the breakfast front? I have a fab almond flour pancake recipe and recommendations for sugar free pancake syrup that I imagine would go down very well with your little girl and any sleepover friends! Smile

Foodtheif · 24/08/2019 21:00

She’s 7. To be fair she has said she had a nice time. I’m probably just looking at the bits that were hard for me to see and that I know, without diabetes, she wouldn’t have to deal with.

She’s still hitting the late 20’s after breakfast. She’s waking high and today I waited for 50 mins and she’s started dropping but not enough. She was really hungry so let her eat then. She also had a spike into the 20’s after lunch too. Even with exercise too. Starting to worry a bit. Dinner seems fine until around 3am ish when she starts to rise.

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AbsentmindedWoman · 24/08/2019 21:05

Exercise will cause her go higher if she's already high - that's true for me and lots of folks - and will most likely make her feel more tired and unwell. I'd wait until blood sugar is under 13 before exercising in future.

AbsentmindedWoman · 24/08/2019 21:08

Has anyone talked to you about basal testing? Are you checking sugars in the middle of the night at the moment?

Waking high sounds like it might be dawn phenomenon, her basal dose might need adjusting.

Her carb ratio for breakfast might be much higher than at other mealtimes too. Can you call your nurse on Monday maybe?

Foodtheif · 24/08/2019 21:51

Oh really, I thought exercise would make her go lower. God, that’s another thing she may not be able to do until her bloods are playing ball then. I bloody hate diabetes. They have upped her basal dose a couple of weeks ago which worked for about a week but isn’t now. Maybe it needs upping again. I will call on Monday and see what they think.

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AbsentmindedWoman · 24/08/2019 22:19

No she can definitely exercise! It's not really a question of waiting until her blood sugars are playing ball, it's more about discovering what impacts different activities and foods have on her and you both (as a team) WILL be able to manage them.

The exercise thing is quite complicated. It is absolutely a great tool for helping to manage blood sugars, because it really increases insulin sensitivity - so you're right in saying that exercise can lower your sugars.

However, once it's already too high to start with, things flip and it causes sugars to go higher. Because you are exercising you need more energy to power your muscles, but your body cannot access the energy from the excess sugar in the bloodstream - so it sot of gets a bit confused and releases more stored glucose from the liver in hopes that will be an energy source, as it's trying to fuel itself.

But there's not enough insulin there, so this sugar is just adding to the excess that's already there - and the numbers go up.

Also, the type of exercise you do will have differing impacts on sugars too. Long slow steady cardio type stuff will burn off sugar steadily - but for example a quick sharp burst can cause the liver to release some stored glucose too. So you get a spike.

Weights for example (not that a child will be lifting weights! but may be doing activities that have similar patterns of muscle use in some sports?) will give me a small spike, so I do weights first without reducing the basal on my pump - and then run with the basal reduced.

Watch for hypos after exercise or activity, because sugars can start to fall hours after. That might sound scary but honestly you will come to know what works for your child, and you can use exercise to your advantage - for example, when I do weights I'll see steadier sugars for about 24 hours after my workout.

Foodtheif · 09/09/2019 20:37

Do you get to a point where you’re not up several times in the night checking blood sugars? Or am I being naive? Last night I had to give a correction at 10.30 when I went to bed. Then have to check 2 hours later and she was 5 so thought I ought to check again in an hour to make sure she didn’t hypo. Then I checked against 3 but I’m not sure why i did that one. Think she was fairly low again and then at 6 when I got up (by which time she was high!!) so that was10.30, 12.30, 1.30, 3.00 and 6.00. Does it get better?

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stucknoue · 09/09/2019 20:44

Have you been on the juvenile diabetes boards? They are really experienced and can offer lots of reassurance. It gets better, my friends daughter is a year in and coping brilliantly, same age - they did check her bloods at night at first but not now. It's getting to grips with dosage, counting carbs etc that's key - they also eat earlier because it really helps with overnight calculations

Foodtheif · 09/09/2019 21:02

No where would I find those boards? On mumsnet? I’m glad it gets better. I’m really struggling with the lack of sleep!

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Flease · 09/09/2019 21:05

My 17 year old is Type 1 diagnosed age 13. I felt like you for a while too, sometimes still do but not as often these days. I used to cry a lot and obsess especially in the middle of the night when everything tends to look bleak anyway! I am very vigilant with his 15 year old sister and she knows it and rolls her eyes at me! 🙄 I’m on a couple of Facebook groups of parents and that is really helpful. I found our hospital team extremely helpful and supportive. A previous poster likened it to grieving which I’d agree with. You work through the stages and at some point accept it. My son has been very good at managing but I know if it changes he’ll have some good support from his team, don’t be afraid to call them and ask for help. Dex com 6 has been amazing if you can get one. There’s lots of us T1 parents out there to support each other so keep reaching out, there’s always one of us out there!

WreckTangled · 09/09/2019 21:18

I wonder if she's coming out of the honeymoon phase? I agree with basal testing and make sure you're on all the fb groups you will learn so much! I think it's important to become more confident so you can adjust things yourself without having to wait for hospital appointments. Also look up low carb baking. I made these and they're 1.5g carbs each she doesn't need to miss out on sweet treats. I also know people who make gummy bears out of sugar free jelly etc

Being in the 20's must be making her feel awful I'm sorry you're still struggling so much

Anyone with a type 1 diabetic child / teen.
Foodtheif · 09/09/2019 21:36

I think she is. They did say last time that she wasn’t out yet as she would be high all the time but she is pretty much there now. If she’s not out yet, she must be almost there.

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Foodtheif · 09/09/2019 21:42

Yes I had a big cry again this morning. Think I had kept things bottled up over the summer and finally had some time on my own. Think it just creeps up on me sometimes. She does keep complaining of feeling ill which must be part of being so high. Those low carb treats look
Lovely but are they full of sweeteners? She hates the taste of those.

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Notsosimple · 09/09/2019 21:56

Foodtheif Did you ever join that Facebook group I sent you the link of? It’s a god send for anyone with a T1 child.

Foodtheif · 09/09/2019 22:04

Hi, yes I did (assuming you’ve name changed now?) I joined them all but did delete a few as it was too much. Didn’t delete the one you recommended though.

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WreckTangled · 10/09/2019 06:50

They have got sweeteners in but they're not all bad. It's got natvia and sukrin gold in. You honestly can't taste it. There's also lots you can buy on Etsy if you don't want to buy ingredients (in case she doesn't like them) if you search keto cakes. If she's that high I would call your DSN and get things adjusted again if you're starting the day high it can throw everything out of whack I always think the first morning reading is the first one to work on, and the easiest because you haven't eaten for 12+ hours

Foodtheif · 10/09/2019 12:14

I will have a search for keto cakes and low carb baking. Thanks for the tip. I’ve always tended to take her a biscuit / piece of chic after school as she’s always nearly hypo but this term she’s still in the teens from a big spike at lunch (which she never used to have) so I need some low carb treats for her.

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99problemsandjust1appt · 10/09/2019 12:18

Best breakfasts to avoid a spike are :

Plain natural Greek or soya yogurt (approx 100g)
Berries (can have loads as low carb!)
In winter switch the yogurt to ready brek with water
We haven’t had a breakfast spike since as long as per bolus by at least 10 mins

We put off a pump as kept hearing it was like going back to just after diagnosis .....it wasn’t ! It was easy and so so much better

We have a dexcom but night tested a lot till we got it

99problemsandjust1appt · 10/09/2019 12:20

Low carb treats -
Sugar free jellies Hartleys do loads of flavours
Cheese
Olives
Cucumber and carrot sticks
Sugar free sweets (but be careful they gave our dd the runs badly)
Nice by nature lollies or mini milks are quite low carb

Foodtheif · 10/09/2019 12:23

Sugar free sweets - my daughter loves her sweets (she has a box full from pre diagnosis going to waste at the moment!) I’ve heard they can cause diarrhoea. How many could she eat, would you say, without it causing a laxative effect? I may look into this.

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WreckTangled · 10/09/2019 13:34

It effects people differently. I've never had a problem with artificial sweeteners. Oh also in tk maxx/homesense you can get skinny syrups. I add it to coffee which obviously she wouldn't like Grin but I also add it to full fat Greek yoghurt I've got a banana one and a chocolate truffle one. They're delicious. You could add it ready brek too. They're zero carbs.

99problemsandjust1appt · 10/09/2019 14:45

My dd managed half a small sf choc bar and got diarrhoea
The gummy ones we got from a health food shop weren’t too bad though she had about 5 I think no issues

MaggieMcV · 10/09/2019 15:06

I'm wondering whether you need to review her insulin:carb ratio at breakfast time. Also, when does she have her lantus? Although it has a 24hr life it tails off gradually after around 20hrs. Moving it to the evening (if you are giving it in the morning) might help soften the spike.
(Mum of 14yr old T1 Dx at 5)