anyone have a child with type 1 diabetes? Or have it themselves?

[fireflower998]

my daughter (age 16) was diagnosed with type 1 diabetes last week, after being rushed to hospital with DKA, which I didn't realise was potentially lethal at the time (thank God).

After four nights in hospital, we're home and she's struggling emotionally with everything, but managing to self inject no problem.
She's had headaches today and has higher blood sugar levels than normal (in the 7-12 range)which the diabetes nurse said is normal with a newly diagnosed diabetic, getting used to their doses and blood sugar.
Are blood sugar levels and insulin doses all over the place initially? Also, she's injecting herself four times a day currently, breakfast, lunch, dinner and before bed. I didn't realise you had to inject so frequently with type 1!
She still feels absolutely exhausted after her hospital stay and has very little energy (she had low potassium in hospital which is now normal)
I wanted to ask Mums of type 1 diabetics, how long is the adjustment period for them after a diagnosis? My daughter already struggled with anxiety and I've heard a diagnosis of type 1 can cause depression. The poor thing has had a tough enough time already without this.

Welcome to the club 😏 DS (11) was diagnosed in September last year. Your hospital team will probably have a psychologist attached, definitely ask to see them ASAP. Her levels may take a while to settle; it’s possible she’s still in the honeymoon period, where the pancreas is still producing random amounts of insulin. Her mood could well also be linked to her levels. When high, DS acts like a horrid little troll, really angry and belligerent, when low he gets quite clingy.

If your daughter is wanting to snack between meals, she might even need to inject more than the four times you mention.

Take your time getting to know how various foods affect her levels (pizza and pasta can be the foods of the devil!). There are FB groups for T1 parents that are very helpful, too. A T1 diagnosis can be a shock, but it’s not the end of the world - my dad has had it for 57 years - I knew what to look for, so DS never got as far as DKA.

Sorry you've joined the club. There are Facebook groups that I've found invaluable over the years for advice or just an audience for a moan.

Insulin dosage takes a while to get right. You don't want a severe hypo from going overboard with carb ratios or corrections. Little tweaks for trends get good levels.

A continuous glucose monitor has helped my son massively. We can see exactly how he reacts to different food and activities.

Mines a little older now. In hospital with DKA on his 17th birthday. We are 2 years In. His numbers were all over the place at first and you have to watch for every cough or sneeze or even over tiredness as they will all affect their numbers.
Same as Idon'tcare his numbers really affect his mood, when he gets up he is in a foul mood until they rise.

Hiya! Again, sorry you’ve joined the T1 mum club. FB parents of children with type 1 is sometimes helpful, sometimes a bit OTT but generally good, especially if you’re feeling isolated/overwhelmed.

Sorry to break it to you, but 4 times a day for injections isn’t that much! My 12 year old has had 6 so far today...still got night time injection and prob another correction or 2 to go!

DKA is a big shock to the body. Be prepared for your DD to lose hair (and don’t worry it’s not all going to fall out). My son was tired for months afterwards.

Blood sugars are generally all over the place for kids TBH, whether newly diagnosed or not. Hormones/growing/stress/weather all affects it. So although things will get more predictable, the aim is to be in range most of the time, all of the time is extremely hard. Or in my sons case, being in range at all is hard (going through puberty, and growing).

It is common to struggle with diagnosis...not just at the start but on and off. It’s hard enough being a teenager, let alone one with a condition that requires micromanaging. As pp has said, there should be a diabetes psychologist in your team that your DD can see. My son says diabetes has its upsides though- a pass to get out of class to go to the loo whenever, he can eat whenever he likes, wherever he likes (except in a science lab) and he’s a bit of an expert on nutrition.

Took us six mo this to adjust, son was just 13 when diagnosed. Went on a pump after a year which made it SO much easier to manage- seconds, snacks, small adjustments etc, he usually does 12+ doses each day now. Up to 20+ which just isn’t possible with injections. It’s horrendous to start with but does get better, he’s been on two school trips abroad, flown several times, done silver and gold DofE and passed his driving test, the only thing he couldn’t do was scuba dive in the year after diagnosis. Give yourself time to adjust, it’s a huge change for everyone.

Thanks everyone, that's really helpful. I definitely need to speak more with other T1 Mums, nobody seems to understand this. After only a week I feel like I've done a crash course in type 1 diabetes, but realise it's only scratching the surface. Not great timing to be diagnosed whilst Coronavirus is just taking off.

DD(10) was diagnosed in June 2018 - just before her 9th birthday. Her behaviour was so awful - it got worse over several months - before dx that tbh I was really pleased to discover what was causing it. She cried because she thought she'd have to live on carrots & hummus forever (and doesn't like hummus).

You might find that a Libre or similar to monitor her BGL (Theresa May wears on!) will make things easier. These take readings every 5 mins and you can see what is going on. I think these may be covered in the UK (sadly not in NZ!). We use one plus other device to transfer BGL to her phone & my phone - makes things so much easier, and minimises finger pricks.

DD has coped very well mentally, thank goodness, and sports her libre with outrageous patches over the top (there's a whole world of diabetes accessories out there!). She injects at least 3 times a day, plus corrections. These T1 kids are amazing - and this includes your daughter. They just do it.

There may be T1 teen groups or camps near you - not sure how you would find out (maybe ask your diabetes team?) but these are supposed to be excellent. They find their tribe.

Hope all goes well - it's all a bit surreal to start off with but it will become completely normal. Good luck to all of you. And if your dd is into sport, look for the video of Henry Slade talking about T1 & jellybeans. It's great.

I look after a little girl at school (I’m a TA) with T1. I often have to inject her at least 3 times a day within school hours so 4 times over the course of a whole 24 hours is quite low I think. She is amazing and at just 5 takes everything in her stride.

Bless her it's a huge thing to cope with. OH was diagnosed as an adult and one of the (many) hard things he found was the variability of his blood sugars. Levels often didn't correlate with what he's eaten - we still don't really understand and realise it is far more complex than we'd anticipated. Another weird thing - injecting into his stomach is more effective than his thigh. Who knows why...

Type 1 adult here. Not to upset you, but four times a day is quite low, I need to do morning, before every meal/any food, before bed and sometimes (if I’m ill for example) in the night.

Ask ask and ask anything of your diabetes nurse, they’re generally very good.

thanks everyone. I didn't realise people inject more than four times a day, just shows how ignorant I was about diabetes before it entered our lives. @Silvercatowner by more effective in the stomach, do you mean regulates the blood sugars better if injected there?

Hi @fireflower998 yes, his diabetes nurse suggested and it certainly seems to be better for him. Goodness knows why.

It's something to do with the blood supply and rate of absorption. Some people do the long acting insulin in their thigh, and the mealtime rapid ones in their stomach.

Type 1 adult here, diagnosed when I was 19. Yes, I do my rapid mealtime insulin in stomach and long acting in thighs. If I’m at a work lunch wearing a dress and have to inject into my thighs, my blood sugar is always sky high for several hours then come plummeting down once the insulin finally absorbs so there’s definitely truth in that. Has she been given a Libre? It’s a million times better and easier than finger pricking.

@ThePug, not yet. We've asked about the Libre and using a pump, but the diabetes nurse said that will come later..they want her to be able to self-inject confidently first, (which she's doing now to be fair) and then she might get a pump and other more modern things further down the line

Please push for a libre, my dd was diagnosed in the Friday and had her libre on the Tuesday.
We are still in the honeymoon period so her levels can be a bit erratic.

We bought a mioamioa that attaches to her libre and that has really helped us as instead of going through and scanning her during the night I am lying her in bed and able to check it on my phone and also can check it whilst at school.

We are still very much in the early stages and the way id describe it for me is like it's going back to the baby stage, I've not had a proper nights sleep since she was diagnosed

Sorry, I should have added good luck, it's hard but you will be amazed at how quick it becomes your new normal

@fireflower998 - can I second the Libre? It makes such a huge difference not to have to finger-prick, and you can see what is going on all the time, not just at a few points in time over the day.

The Miaomiao mentioned above allows you to set up alarms to go off before blood sugars go too high or too low, which makes control easier. Also means that you can go to bed and to sleep with less worry - the alarm will wake you up if treatment is needed! I put DD's alarms on silent overnight, with my phone set to loud. During the day she has her phone in her pocket, and it vibrates to tell her that she needs sugar, or insulin. So helpful

can the libra be bought privately? If the NHS wont fund it at the moment (and they said they want her to get used to doing injections etc for now)how much does it cost to self fund the libre?

Not sure about libre, but my son has a dexcom. We self fund at £150ish a month for a year long contract. They do a month trial for £150 with any commitment or obligation to sign up.

Yes, my daughter was diagnosed when she was 15, completely out of the blue with no symptoms until she collapsed one day and lost her sight (temporarily).

She’s 21 now and well controlled. She’s had very rough times but she has got through them. I’m so proud of her.

Good luck to you and to your daughter. It will quickly become your new normal.

The Libre is for testing blood glucose so you don’t need to fingerprick much, and can see patterns more easily as you get a reading every 5 minutes.

The pump is for giving insulin so you don’t need to do injections.

Two different things. You can buy the Libre privately. But the bit about “getting used to injections first” is bollocks. That takes about a week!

My DS16 was diagnosed when he was 12. I also posted on here for support and couldn't believe it when people said that life would go back to normal. I would set my alarm every hour during the night - was so scared of hypos. I think numbers are all over the place at the start because the insulin/carb ratio is trial and error. It will change as time goes on. My DS now is confident enough to increase his ratio or levemir dose if numbers go awry (like now because he is at home and so less active).
Four years on and I can honestly say that there are some days where I don't even mention it. The testing, injecting, treating hypos comes naturally to DS -just a habit that he has learned. He says it isn't a big deal to him.
Teenage years are tough - hormones, stress, excitement, alcohol - all have an effect on blood sugar as well as the carbs you eat. Just support as well as you can but understand (it's hard!) that you can't manage it for your DD as much as you might want to.
I would add that the freestyle libre has been a total gamechanger as was the DAFNE course (carb counting). We self funded the libre at first (I still buy some privately as DS is terrible at knocking his off by accident).
Good luck to you both - T1 is getting much more common but there is a lot of support and info.

Oh! I'm so sorry! T1D if 49 years here! As well as getting used to injecting, start trying to carb count - insulin gets injected so much per gram of carbohydrate www.diabetes.co.uk/diet/carbohydrate-counting.html
Start to understand carbs for now 💐
Good luck! x

Hi, I’m aware this is an old thread but hoping someone has some advice. I have another thread going at the moment about my 6 year old who has had 4 bouts on D&V over a 2 week period…when I called 111 earlier they asked about T1 Diabetes which he doesn’t have. A friend does have a blood sugar monitor though and tested him - he hasn’t eaten since 20:30 yesterday evening, on waking his blood sugar was 8.0 and is now 9.1. 111 say this is normal and OK, I just wanted to double check it is as Google says differently….