5 year old daughter diagnosed today

[Kuba85]

Having an awful night here after our 5.5 year old daughter was diagnosed with diabetes (I can’t believe I am typing this). My amazing wife caught it fairly early as she noticed excessive nappy wetting (we could not wean her of her nappies at night due to large amount of fluids).

As probably every parent, I wish it was me instead. But it isn’t.. So anyone here who dealt with this for kids? Any tips at the start? Any words of encouragement that the child gets used to the multiple injections per day? Any alternatives to the injections? Basically just here to vent my frustration but also possibly find some useful guidance.

 

[Jaylee]

Having an awful night here after our 5.5 year old daughter was diagnosed with diabetes (I can’t believe I am typing this). My amazing wife caught it fairly early as she noticed excessive nappy wetting (we could not wean her of her nappies at night due to large amount of fluids).

As probably every parent, I wish it was me instead. But it isn’t.. So anyone here who dealt with this for kids? Any tips at the start? Any words of encouragement that the child gets used to the multiple injections per day? Any alternatives to the injections? Basically just here to vent my frustration but also possibly find some useful guidance.

Hi,

Welcome to the forum.

Sorry to hear about your daughter.
High BGs will spill out through the urine & excessive thirst is part of it.
It will get better as BGs stabilise.

Take heart. It can get better…

I was “that” kid once.
The technology has advanced regarding managing this condition.

Hopefully some parents will see this & offer you support.

Best wishes.

 

[Marikev]

As someone diagnosed as a granny I’m afraid I can’t offer much practical advise. I found the finger pricks to take a Blood glucose level worse than the insulin injections, but with your daughter both these should be taken care of with a CGM, continuous glucose monitor and an insulin pump. She will be given priority for these aids as I understand it in the UK. The technology is so much improved these days.
There will be lots of hospital appointments, but if you can find ways of adding a bit of fun or leisure/play time into these, all the better.
I have a friend who was diagnosed type 1 at age 18, who took the view he wished he had been diagnosed much younger , so that by the time he hit his late teens the whole dealing with type 1 stuff was just routine for him. And he wasn’t trying to get to grips with it along with changing schools, driving lessons, going out with girls, drinking etc.
You’ve quickly found this forum, where you will get a lot of support and insights.
best wishes for you and your family.

 

[EllieM]

Hi @Kuba85 and welcome to the forums. I can't advise on the parental side of T1 but I can say that as someone diagnosed 54 years ago age 8 that diabetes need not stop your daughter from living a long and healthy life and achieving all her ambitions (well astronaut is probably out).

The treatment for new T1s is truly awesome, hopefully your daughter already has a cgm to minimise finger pricking and long term an insulin pump may be worth looking at.

Good luck and once more welcome.

 

[becca59]

Welcome @Kuba85 it must be awful as a parent to take on the enormity of this disease. However, I am sure your daughter will take it in her stride. As you are in the UK your daughter should before long be put on the hybrid closed loop system, as the intention is for all children to be on it. That will involve a pump with a CGM. So less injections.
Unfortunately insulin is the only treatment for type 1.

 

[Kuba85]

Welcome @Kuba85 it must be awful as a parent to take on the enormity of this disease. However, I am sure your daughter will take it in her stride. As you are in the UK your daughter should before long be put on the hybrid closed loop system, as the intention is for all children to be on it. That will involve a pump with a CGM. So less injections.
Unfortunately insulin is the only treatment for type 1.

Thank you. Seen this device already indeed but didn’t know there is a goal for all kids to be on it. Reassuring. Things and terms I thought I would never need in life.

 

[Juicyj]

Big hugs it's a difficult learning curve to go through and the emotional side can be incredibly hard, look at the Facebook group for T1d parents as you will always find someone there day or night who knows exactly what you're going through. Being diagnosed with a condition like type 1 can bring many different emotions, it's related to the process of grieving, so going through the blaming/bargaining/guilt etc etc is absolutely natural but as your knowledge grows so will your confidence.

There is only one alternative to insulin injections which is an insulin pump and in time you will be able to access one, however kids are amazing and can easily bounce back from these situations and cope much better than adults, they do read us very well though so will pick up on your emotions and reflect them too, so staying cool and calm is vital as you navigate this together, there will be bumps it just helps to have mental resilience to bounceback from them, but that's why connecting with other t1d parents is good, also look at JDRF who do meet ups for kids as that will help you to normalise this by seeing how others cope.

We are lucky in this day and age to have access to the tech available, Partha Kar in the NHS has been a fantastic advocate for ensuring this happens and being diagnosed should in no way impinge on quality of life or the ability to choose one's future goals.

 

[Hopeful34]

Hello @Kuba85 and welcome to the forum. I'm sorry your daughter's been diagnosed with type 1. I was diagnosed many decades ago aged 2, and know my mum and dad found it very hard. As others have said, things have fortunately moved on since then, but it's still a steep learning curve.

I hope you find that your hospital team are good and supportive, and your daughter can get to know other children with diabetes. Do keep asking questions on the forum, as there's always someone around to help.

Take care. Sending hugs to you all x

 

[Kuba85]

It has been nearly a week since we did our blood tests, which then led to the diagnosis later that day. It has been a very busy, stressful, hectic last few days but just wanted to say THANK YOU for the messages from those who responded here - you were all amazing and it helped knowing "we are not alone" (even if that is statistically obvious).

Our daughter left the hospital on Tuesday evening. We had a conversation with her and explained what has happened - this seemed to have cleared some matters in her head as we felt a sense of relief from her (seemed fairly confused until that point) - so to others in a similar situation, we would recommend an adult conversation. She is back at her school first day today - receiving enormous support and showing everyone how she is getting injections every day.

Day to day is obviously still a challenge with all measurements, timings etc., but we are able to get her most of the time within the 4-14 range which is good. Next challenge is to start sleeping normally - we are still waking up constantly checking on the app that her levels are fine and have not suddenly dropped... This will hopefully end soon so we can get a night of sleep. Apart from that CGM has been of great help here and allowed us to understand how to plan our meals during the day.

Anyway, just wanted to say thanks to everyone for the words of support. If anyone new is also reading this, then things do get better in the days that follow the diagnosis. It is not the same as before, in fact it's quite different, but as long as they are smiling, you can set aside some of the inconveniences.