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.

I’m afraid I haven’t been through this but didn’t want your post to go unanswered. I am sure that once everything’s been sorted out, she’ll understand that you had to do what was best for her. I’ve had to hold down children to give medicine, and once for a general anaesthetic (I cried after the latter - it was awful), and the DC haven’t held it against me. Children are incredibly resilient, and tend to live more in the moment than we do, so once she’s more comfortable, hopefully she’ll bounce back.
Are the staff trying at all to explain to her what is going on? It’s such a pity the numbing cream didn’t work as it is usually great. It must be a scary time for you as well as her. I’m sure more experienced posters will come along particularly in the morning - there may be an existing diabetes thread in this topic?

Thank you. The nurses are doing their best and when she's calm she seems to sort of understand (as much as she can, even I'm still getting my head around it), but when the needles come out everything gets overridden and she's pure fight or flight.

I did a search and found one thread but there weren't many replies. I'm trying not to message DH as I need one of us to be functioning tomorrow (he's not allowed on the ward because of covid).

I’d forgotten about Covid (well obviously not forgotten about it, but just in terms of hospital rules etc) - that can’t be helping.
Have they given you any indication of when they might be able to provide a diagnosis and get her onto a steadier regime? I don’t know much about diabetes so that might be a silly question.
I do know what it’s like to have an ill child though as my DS had an epilepsy diagnosis a few years ago, so sympathise with the anxiety about what the future might hold, and the late nights in hospital. 4am (if you’re in the UK) is never a great time.

Not a silly question at all - it's all new to me so I've been asking the same. Tomorrow the diabetes nurse is here, and the results should be back so we'll know a lot more then, but everyone is treating it as if we already have the diagnosis because her blood sugar was so insanely high (and a lot of other symptoms tallied too).

How is your son now, is the epilepsy under control?

I just wish we could treat it in any other way, a medication that hurts and has to happen several times a day is just so cruel.

Yes I'm in the UK, the birds are singing and I've had one hour's sleep and no food since Thursday night. But adrenaline is keeping me going, I'm sure when we get home and DH is there I'll crash. What are you doing up?

Thank you for talking to me - it's helping.

Goodness, you should try to get some sleep - though those fold out chair things aren’t always that comfortable. Though I can’t talk - I was woken up by one of the children who went straight back to sleep and now I can’t sleep (though I’ve got nothing urgent tomorrow so can hopefully catch up). You should try to eat though - is there nowhere you can make a slice of toast on the ward? You don’t want to keel over.
Anyway I’ve got a childhood friend whose brother has had type 1 diabetes since he was really young. From what I remember when we used to hang around their house as teenagers, it was a completely routine thing which just became part of their life (and he did all the normal sports/activities etc and now has a successful career and children etc). So hopefully (if she is diagnosed) she will get used to it all, and this will be a distant memory.
Yes, the epilepsy is controlled by medication - they are thinking of trying to wean him off in a year or so (he’s 12), as apparently a proportion of children can grow out of it. I’m quite nervous about that prospect though - we’ll see what happens.

My son is type one diabetic. There are some great support groups on Facebook if you search UK children with diabetes.

It does get easier I promise and life has a different normal. Make sure you take time for yourself and you seek support.

My DS is 21 now and living away at uni. Diabetes has not stopped him. He completed god DofE, had a month in Africa with school and lives an independent fulfilled life. It does take more planning, but he knows he can do anything he puts his mind too.

The groups on Facebook are active day and night. Always someone to chat too.

There is a freeze spray they can use instead of cream, maybe ask if that's a possibility?
I know two friends who've been diabetic since small and it's not held them back at all.
I hope today is a better day.

Thank you everyone. DH is on his way with food (for me, DD asked if she has to have an injection before she has breakfast and when I said yes she claimed she wasn't hungry).

She's very subdued this morning, not her usual self at all. I'm tearful and barely holding my shit together.

It will get easier and she will get used to it. My son was older when diagnosed, but I know on the Facebook sites there are younger children.

There are lots of useful tips and there are some options that keen she won't need constant injections, like pumps etc.

Please discuss with your nurse the libre 2 that stops the finger pricks also x

*mean

There are also ways to inject that are less painful if she can't have a pump straight away. It will get easier x

If she's allergic to the cream, ask for cold spray instead.

Hi OP, my daughter was diagnosed with type 1 at four years old. She is now 20 and I agree with previous pp, it doesn't stop them from doing the things they want in life, it just takes more planning and consideration.
You will get into a routine with your diabetes team on hand, and things will settle.

My daughter hated injections at first and I remember her screaming every time a needle came near her in hospital. The nurses were brilliant and eventually it became our day to day normality.
She uses an insulin pump now, which means less injections and hardly any finger checks, things do get easier but it does take time and is a huge learning curve.

I highly recommend Children With Diabetes UK forum. The advice and support I received in the early years particularly was priceless.
Unless you have had a child with diabetes it is really difficult to understand the complexities and day to day struggles - you will find many parents on the forum who can relate and help you manage the ups and downs by sharing their experiences.

You will get through the initial shock and your dd will settle in time. It is a horrible condition but is manageable, but there is so much to take in and learn at first - just take one day at a time and all the help and support offered. For you OP 💐

Cold spray and libre are the way forward. My DH was diagnosed age 11 and still faints if they take blood, he was so traumatised by it, ask to be referred to play therapy to get this sorted whilst she's young.

Get a libre lifestyle kit. It's the best thing my dad ever gave me (I have gestational diabetes). It is a needle that goes into your arm then you have a device or phone that reads blood sugar levels. It's not n your arm for a fortnight then you need to replace. It doesn't hurt, I have forgotten it's in my arm and it has meant I can monitor my levels very closely.

Now it's expensive. £50 a fortnight. In my case because it's short term I can afford it, but if you try it and it works the NHS might provide it for you (they did for my dad)

I am not sure whether it's recommended for children but check it out it absolutely solves the trauma of finger pricking

Hello again, glad some posters with more experience than me popped up. Really good luck with everything today - hope your DD is feeling more perky very soon. And that you can get home and get some sleep, as that will immediately make everything seem more positive.
Will be thinking of you both.

My daughter has been type 1 since she was 8 she is now grown up so have quite a bit of experience
She quickly adjusted to injections and blood tests and became very competent at it.

Becoming quite clear she's severely needle phobic. She's having 10 needles in her a day and every one is pure torture for her, she feels that she's fighting for her life and she's fighting against her parents which is double torture. We can't do this, it's so damaging to her emotionally

While you are still in lean into play therapists. There will be kid Videos on YouTube & look up possibly social stories/books.

Do you have a diagnosis and the answers know?

It must be scary for her as she obviously felt so unwell - when she feels better in herself she will be able ti comprehend it all more. She is probably still in fight/flight/freeze as from the time of your post sounds quite dramatic 36hrs.

If she is into a certain toy or Teddy burying her one and getting her to do finger pricks on the Teddy etc -

Hope you have some answers & things are improving.

Final tip - ask them to do things away from her bed, so her bed is a safe space so she can start to relax in between and build trust back up.

I spend a lot of time in hospital with my youngest, not for diabetes but she needed regular blood tests, injections etc. Play Therapist are definitely your friend here, they worked their magic along with a nurse who had a magic touch with DD. She is 6 now and just sticks her arm out for any blood tests etc now.

I'm so sorry. They will help you, just hang in there.

Type 1 diabetic here! I was diagnosed at 6.
Not much time to write a long reply now but ask about the [https://mmc.medtronic-diabetes.co.uk/iport/ iport]] it may help. I've not used one myself but know a little girl who has one and it made a big difference. Good luck! xxx

iport

I am crap at doing links, hopefully this one will work!

Definitely ask if there are any play specialists on the ward.

They will be able to help explain the treatments to your dd and use hospital play and distraction to help alleviate some of the fears. They can help teach you both coping techniques for blood tests too.

Reward charts can be useful too.
Hopefully she will be less frightened once the new routine of treatment becomes more established.

Read through all the responses several times over, thank you so much. We're all feeling a bit calmer now.

I had two massive panic attacks one after the other, thankfully I had time to take myself out of her room, as awful as they were, they made the consultant aware of just how traumatic this is for us. She is amazing and has come up with a plan that's already starting to work I think. As another poster said, we now don't do anything at all in her room except sleep, eat and play. Everything else happens in a treatment room. I've got her a libre kit which the doctor is keen for her to use. I've also bought a buzzy bee pain relief thing for the injection sites.

All the nurses were telling me to be strong, not cry in front of her, etc but I just couldn't do it. All three of us cried together and talked about how awful this is and how we hate having to do this to her, and we are hurting inside just as much as she is, but that if we don't do it she'll be so poorly and we love her too much, she's too precious to lose. That sort of got through to her and she seemed to stop fearing us then.

Her last long acting insulin injection was the best one yet, so I'm hoping for a better day tomorrow. We bought her some new toys and all played mermaids on the floor of her room before bed which was lovely - not something I ever thought I'd actually truly enjoy!