Newbie struggling

[SJM]

My 9 year old daughter was diagnosed with type 1 on Tuesday. Home from hospital New Year’s Day and just feel like our lives have been turned upside down. I’m crying a lot (away from her), little things can trigger it.
I need to cope for her, but it’s hard. Any advice?

 

[Proud to be erratic]

My 9 year old daughter was diagnosed with type 1 on Tuesday. Home from hospital New Year’s Day and just feel like our lives have been turned upside down. I’m crying a lot (away from her), little things can trigger it.
I need to cope for her, but it’s hard. Any advice?

Hello @SJM,
I have no advice to personally offer, my rendezvous with this D malarkey was very different. A book that is widely referred to for excellent overall information is by Dr Ragnar Hanas, called "Type 1 Diabetes for Children, Juveniles and Adolescents". I'm 75 and found it very helpful.

I'm sure others will be along very soon to help. Meanwhile tagging @Tom1982, @Thebearcametoo, both parents with T1 children plus @Inka, @PhoebeC
both longstanding T1 members themselves and (I think from a young age). Also @everydayupsanddowns, who will know who other active forum T1 parents are.

I'm in no doubt that this is a singularly tough situation for you right now; things will get easier with time alongside "trial and learning". There is a huge amount to get your head around.

 

[Proud to be erratic]

Oh, and tagging @Daisynova, T1 herself with a 14 yr old newly disgnosed T1 daughter.

 

[everydayupsanddowns]

Sorry to hear about your daughter’s diagnosis @SJM

Feeling overwhelmed and emotional is not at all unusual in those early weeks and months. Many families go through a form of grieving following a diagnosis with T1, and can experience the jumble of intense emotions (anger, denial, bargaining, depression) that can involve, before moving towards a form of acceptance.

@Sally71 @stephknits and @Bronco Billy also have experience of navigating those early post-diagnosis days.

T1 diabetes is frustrating, fickle, contrary, and sometimes pretty frightening, but it’s also something that can generally be well managed and ‘kept in its box’ with a little attention, adaptation, and some lateral thinking. Plus with new technologies and treatment options like hybrid closed loop and CGM it’s more possible than ever to have increased time in range without diabetes management having to dominate your every waking thought.

 

[Thebearcametoo]

Hi and welcome to the club no one wants to join. My kid was just shy of his 9th birthday when diagnosed - he’s nearly 15 now.

I promise you it gets easier. But those early months are difficult.

You will be overwhelmed with information right now and that can feel impossible. The best thing about childhood diagnosis though is that you have lots of support. Don’t be afraid to call the out of hours number if you need to. And you can call the paeds ward in the middle of the night if necessary. You’re not on your own.

Come on here and whinge or talk about your fears. Talk to the team psychologist if you need to.

 

[Inka]

Welcome @SJM and sorry to hear about your daughter’s Type 1 diagnosis. It’s a huge shock and it’s completely normal to feel like your world has been turned upside down. The exhausting thing is that you can’t have a break from it because you’re thrown in at the deep end and you have to keep swimming - ie work to begin to control the diabetes. Also, you have to take a lot of information onboard just at a time when your head is everywhere. Having said all that, it does get easier. Your world and, importantly, her world will slowly right themselves over time.

My advice is to continue to maintain a positive face to your daughter, but also allow her to offload on you. Acknowledging her upset/anger/fears is the right thing to do, but you can do that while communicating that this is something you can deal with and that she’s not alone. Her hospital team may have ‘buddies’ they can put you in touch with, for both your daughter and yourself.

I also recommend the Ragnar Hanas book @Proud to be erratic mentioned above. It’s good to have something on hand to check, to read, and to take in.

Pace yourself. These early weeks are hard. With regard to school, personally I’d keep her off (if she’s ok with that) until she’s more settled and until the school have a Care plan in place for her and trained staff. Again, her team will be able to help and advise you about this.

 

[mashedupmatt]

Hi @SJM and welcome to the forum - sorry to hear about your daughter's diagnosis - it is a big shock and there is a lot to take in, but you are in the right place here - we're all here to help as much as possible - please ask any questions you may have, however trivial they may seem

 

[Sally71]

Just take it one step at a time, don’t be afraid to ask for help, and take all the help you can get. There’s nothing to be ashamed of, it’s nobody’s fault, it’s just rotten luck. You are in shock and probably feeling very overwhelmed at the moment, that’s perfectly normal. You also have to go through a grieving process, that’s also normal. It does get easier - honest!
You can do it - because you have to. Learn to do the injections first and how to recognise hypo signs. Then take it from there. If you have any questions, just ask - either the medical team or on here - we were all beginners once so no question is silly!

 

[PhoebeC]

@SJM welcome, it’s a club no-one wants to join. I am sorry.

I was 16 when I was diagnosed, a mature head which makes my experience different that your daughters. I did it all on my own from day 1, it was a shock for my mum and she helped with appointments and emotional support etc but she knows very little about diabetes. She might have felt upset about it as you are now but it didn’t actually impact her life that much and if it did only at the start.

But I have grown up with it and had it more than half of my life now, so I can help with some of what she will face as she grows up.

Don’t panic, you can do this and so can she. Kids are resilient.

Ask questions and do your research from reliable sources, you found the forum which is great. Diabetes UK have loads of support and do JDRF (Breakthrough T1D). Lean on your hospital team.

What I can say is that diabetes won’t stop your daughter living a great life, anything she wants to do she still can. It just takes planning that’s all.

There’s professionals in all sorts of fields now, international sports stars, NASA engineers, singers, models, all emergency services, pilots etc.
We travel the world, look after others, do amazing things.

And we are living longer with less complications, and the treatments are better too which means the day to day and general health is better.

Take care. Try not to beat yourself up about it, nobody’s fault and it’s not using your energy in the best way.

 

[SB2015]

Hi @SJM Sorry you have needed to join us, but pleased that you have found us.

The emotional roller coaster that you are experiencing is perfectly normal. This will get easier. Use your team and don’t be afraid to ask for help. That is what they are there for. As @Sally71 says, just take things step by step, at a pace that suits you and your daughter. So long as you are managing the injections and know what a hypo is and can respond to these (we have Jelly babies everywhere in the house just in case -lots of small tupperwares dotted around the house) that will kneel your daughter safe. You can then refine things step by step.

I found the Ragnar Hanas book, Type 1 diabetes in children adolescents and young adults very useful. Clear explanations, regularly updated and a good reference to dip into as time goes by. Good info on starting back at School.

Your diabetes team will work with you and the school to come up with a healthcare plan which will cover all the essentials. They will also know if there are other students in the school who have T1.

There is loads of experience to tap into on here and no questions are considered silly. Just ask.

 

[trophywench]

Have a look at the website https.breakthrought1.org.uk - what used to be called the JDRF (Juvenile Diabetes Research Fund/Foundation) - they've changed their name to Breakthrough T1 and Oh yes they are searching for a cure but also give shedloads of info and guidance for parents of newly diagnosed children - slightly more specifically tailored for you than DUK itself.

They used to provide teddy bears for the kids*, dunno if they still do or not, as I haven't clicked on the links for parents on their website. * was the bear called Rufus?