Type 1 diabetes

[booboobutt]

My daughter has been admitted to hospital with suspected diabetes. She's 6.

She's had more finger prick tests than she has fingers, 8 vials of blood taken (the numbing cream gave her an allergic reaction), 2 insulin injections and she is utterly utterly traumatised. She screams for her life every time and the nurses have to hold her down.

I don't know how we're going to get up tomorrow and do this all again before she can even have breakfast.

Is she going to see me as complicit in her torture? I should be her safe person, but I can't protect her from this.

If anyone has been through this, or similar, I would really appreciate a chat.

It gets better.

Ds2 was diagnosed at 4, he's 13 now. Uses an insulin pump and changes the connection site himself every 3 days (when I remind him!). Also uses a dexcom glucose sensor. 4 needles and a couple of finger pricks every 10 days.

At the moment I imagine she's conflating failed cannula insertions (painful,traumatic) with meal injections (really not that bad). And you are understandably overwhelmed. It does get better, honest.

m.facebook.com/groups/UKCWD/
Facebook support group. There's always someone else up at 2am to talk to.

Oh, when they/you put the libre on - the needle goes in and out of the skin fast and she probably won't feel it. But she will feel the plastic of the inserter banging against her skin. Ds2 had a Libre for a few years and said the jolt of the inserter was always a bit of shock and made him think it must have hurt when it hadn't really.

Insulin pump and cgm are game changers
Also for these days where she wants to eat but doesn’t want an injection - sugar free jelly, cucumber, pepper, cheese, 2 or 3 mini rice cakes we used to do a little plate and dd was so happy eating with no injection x

I thought I had better reply to this as I went through similar with my little boy (11) this time last year when he developed type 1. Unfortunately before diagnosis, he developed Ketoacidosis and we nearly lost him. Following a few days in intensive care and a few days on the ward, I was broken watching him come to terms with his diagnosis. I can't bear to think about the confusion and despair in the first few months. I couldn't believe this was his life now, it was so unfair watching him prick his finger and inject insulin every few hours to simply eat. I didn't believe the diabetes nurse who said that we would adjust and it would feel normal!

That was April last year and he's doing great! Yes he continues to prick his finger 5-6 times a day and injects 4-5 times a day, but it is so natural and such a non issue compared to last year. He's got it completely under control, he just learned and is not phased by it at all anymore. The diabetic nurse went out to the school to teach teachers about Diabetes and he is fully supported by them and his peers at school. He takes a little can of Appletise in his bag for hypo's!

I just wanted to let you know it does get better and life falls back into place eventually. The needles were difficult at first, but we explained to him exactly why it was needed and what the insulin did. We kept it casual and showed him pictures about how it all worked and eventually he started to understand. At hospital it was brutal, I used to cry what they constantly took blood and injected him, but this improved at home. Additionally, there are options out there such as the Libre and the pump. These will cut down on the amount of finger pricking and injections.

Good luck with everything, it really does get better.

@booboobutt hugs to your darling DD and to you - you will be amazed how quickly she will adapt to this new world. As an aside - not helpful but kind of context - my brother was diagnosed aged 14, almost fifty years ago now! I remember my mum boiling glass syringes and needles in a saucepan to sterilise them, and needles that blunted and cost money - diabetics only got free disposable needles in the very late nineteen eighties. Anyway, he is a strapping Yorkshireman now who still races dinghies for fun, and has broken most of the diabetic rules he was ever given, but that's just him - it is much easier for young diabetics now, but I remember my mum's shock and grief at the time, and I do feel for you.

Just to say it’s ok if you, her mum, don’t want to do the needle bits. Get one of the nurses to be the bad guys and you go out of the room whilst it’s done and then come back in to comfort her. Or have your husband be the ‘bad’ guy and you just do the comforting bits. I found my daughter needed one ‘safe’ person who she knew was never going to hurt her (even if that hurt was for her own good). It also made a massive physchological difference to me at a time when I was having to cope with so much. Some people may judge this approach - but they don’t have to go through it- you do.

Also to help with taking blood - keep her really hydrated and warm - it makes a massive difference. And ask for the specialist blood taking nurses - the doctors are generally the worst at it! You want the pros who do it all day every day !

Hello @booboobutt type 1 diabetic here from the age of ten, so a little bit older than your DD at diagnosis but possibly had similar reaction to what she is currently going through.

Very happy to talk via DM if I can help in any way. I put my mum through the worst and best of times with all the challenges and wins that T1D comes with - am now in my late thirties with two DC.

She will manage this, and so will you - in time her keeping her blood sugars stable becomes just a game, everything can make a difference from the weather to the point in her menstrual cycle to whether the fruit she has just eaten is ripe or very ripe.

You and she can do this 😘

I'm still here and still reading, thank you. Your messages are really helping. Sorry I'm not replying much - there's no time and sometimes when there is some downtime I need some space from it.

Her sugars shot up to 24 at her dinner time test which meant she had to have another finger prick at 10pm, she was shattered bless her. But actually she coped really well with that one (in comparison). We are making progress, slow and small but we are.

I've also been told she can have some foods without the need for insulin (as some of you already pointed out) and that she can have a 10g carb snack without insulin. Sounds silly but knowing she can still have her "backdoor treat" at grandma's house and her after school treat at home makes a massive difference in the life of a 6 year old. 6 and a half, she'd be cross with me if I missed the half!

We have a libre kit coming at the end of the week which can't come soon enough, and we're looking at the I-port, although I think there are a lot of options to go through. We have a zoom call with the specialist diabetes nurse tomorrow to give us the training.

I’ve had another thought. Bear with me as typing on my phone in the rain!
Re needles, normalise them! I think there’s saline cartridges for exactly this. My DS doesn’t bat an eyelid at me and needles, or him and needles, as they are no big deal. The nasal flu vaccine, however, was another story!!

My brother was diagnosed at 5 back in the 80's when the testing kits were a torture instrument (they were loud and the needles were thick). My nephew was diagnosed at 2 1/2. He now has an insulin pump and I think it's the libre monitor. She will get used to it, although I think in many ways it will be worse for you as you are the one administering it. I remember having to hold my brother down so my DM could give him his injection as he used to run away from us. But as soon as it was done he would be fine.

Have you been assigned a diabetic nurse? There will be a specialist juvenile diabetic team who you will have access to and they should be really helpful. The next few months will be a difficult period of adjustment, especially because the pancreas will still occassionally produce a bit of it's own insulin so it will take a while to get stable blood sugar levels.

DS was diagnosed when he was 4. The first few months are the worst, but it gets better.

In the beginning we had to remove the bathroom locks as he would run and hide when it was mealtimes. I had horrible thoughts of him going low in there and us not being able to get in and having to roll glucotabs through the gap between door and floor.

Sadly they very quickly get used to it. There are no free meals or days off. Picking what finger to poke, and where to inject gave him some control and helped him feel better.

Cgms are a godsend. I love ours, he has a Dexcom that gives a reading to his apple watch. It's less distracting at school and handy for when we're out. Pumps come later and the basal is a world of difference to set.
First of all have your hypo treatments sorted. We had the flowchart on the fridge and dextrose in every bag and pocket.

The Juicebox podcast by Scott Benner is amazing, he has a basics type series, as well as ninja level stuff. There's also a Facebook group called Diabetic Mums UK (mums with T1 kids) that I've found invaluable over the years. Typically it's the weekend or night when you want the DSN to ask something stupid, on that group you'll always get a quick reply or just someone to listen to you rant.

We got home from hospital yesterday afternoon, and yea she went and locked herself in the bathroom at dinner time. She eventually let DH in and she did really well, we think it's actually the blood from the finger prick test that she's phobic of, not the needles. She has a libre arriving on Friday so hopefully things will be easier in that regard by the weekend.

What did you all do about work? I was up all night worrying about going back. I don't want to go back at all at the moment, I can't imagine ever being able to focus on anything else (I work with very challenging behaviour so I need to be emotionally stable). I know I'm not entitled to anything other than unpaid parental leave. I feel like taking a month off. She hasn't had a hypo yet and the nurse said they present differently in everyone so she can't go back to school until we're well practiced with those and know how she presents and how quickly she comes back up, what her recovery time is etc..

We also realised why her bloods shot up again the other day - the nurse was going all the calculations and I was just administering the doses, but she was miscalculating her food, way underestimating the carbs, and then not giving her a correction dose either. So we took control and her blood are more stable now. We also had training on how to use the pens, I had been using it way too hard, they'd told me to pinch her skin and then I'd be jabbing it in like an epi pen :( poor child. It's better now I know I can be so much more gentle. She had bruises from where I had been injecting her, but now I've had the training it barely even leaves a pin prick.

That all sounds really positive, booboobutt. Have you been told about DLA? It's an allowance for disability. I would imagine your DD would be eligible, but the forms are a bit of a nightmare. She won't be eligible until 3 months post diagnosis, but as it's a life long condition, you can apply straight away and then they'll award from 3 months. Although, you might want to wait a month or so, so that you have a more accurate picture of how it affects your DD.

Hello
My DS was diagnosed T1 age 2 and is 5 now. It's hard but it's ok, take time to cry and be upset but things will get better and your little one will show you so much strength and will amaze you.

Just came on to agree with PPs the Facebook support groups are great and very helpful , also I see you've got a Libre which are handy but push for a Dexcom G6. We self fund it (using DLA) and it's worth it's weight in gold. It saves all finger pricks as it's licensed to dose insulin from.

Take care

Don't worry about the bruises, sometimes a blood vessel gets nicked and leaves a small bruise.

Hypos are often described as being shakey, weird or wobbly. My son gets quite emotional or looks spaced out. Any odd behaviour just check her glucose.

I ended up working mainly from home. I was commuting on the train and would take an hour on a good day. You can expect lots of calls and having to pop into school while they get used to the care plan and get signed off by your nurse. Even now at the start of each school year I don't plan anything for the first week as plans usually gets wrecked by the school.

If you can get signed off for a month it would be a good idea.

Libre 2 works the same as Dexcom - are you sure you’re not getting that? Would probably be far better.
Info here

Yes we're getting the libre 2. We still have to do the injections but they're saying in 6 months or so we could probably get a pump.

Ah, that’s good! Save you shelling out for a Dexcom (or arguing endlessly to try and get one on the NHS!)

Just to update the thread (and for anyone reading this in future who's in the same position), we are in a much better place. It's been 20 days since diagnosis and DD is so much better with the needles. I never thought it would happen but she's so brave - has her finger pricks and injections fine. The Libre is great although it was a real struggle getting the first one in due to her fear, and then it broke so we had to do it all over again. But she's very proud of it and likes to show it to people when we go out.

The first week and a half after we got home from hospital was tough. She had been through so much trauma and she was angry all the time, tearful often, we couldn't always comfort her because she was so angry with us. I had to call my mum round a couple of times just because she was so upset but wanted nothing to do with us. Thankfully that's mostly passed now and she's a lot more settled and happy. She understands we're doing this to help her, not to hurt her.

She's doing a phased return back to school. I'm staying on site which is incredibly boring but I'm getting through some good books and it means she can play safely with her friends and the teachers feel a bit more confident knowing I'm on hand while they get used to it.

Medically speaking, we're getting the hang of it. She has a lot of highs and lows but they say that's normal for a newly diagnosed diabetic and will settle down. We're treating the highs and the lows and managing to keep her as steady as we can. My work have been amazing, and I'm off until the start of next term (I'm a preschool teacher), which is such a relief.

Feeling apprehensive but positive for now!