New Type 1 Diagnosis 9 year old

[JoSwan]

Hi everyone,
My 9 year old daughter has just been diagnosed whilst on holiday in Menorca. We are all shocked and worried. The hospital and staff here have been fantastic and are giving us the best care until she’s ready to be discharged and we can fly home. Any help, guidance and reassurance would be much appreciated, as we are very scared.
Thanks
Jo

 

[Sally71]

Hello there
Welcome to the club that nobody wants to join! That must be double scary being diagnosed while on holiday. It’s a massive shock, your lives have changed forever and you do have to go through a grieving process for the life that you don’t have any more. But it isn’t the end of the world. Take it one step at a time, at first you need to learn about doing injections and how to manage meals. At some point they will teach you about carb counting, where you work out the carb content of each meal and match the insulin dose accordingly, which gives you much more flexibility to eat what you want when you want, this isn’t always taught immediately though as it can be a bit much all at once. Just get used to doing injections to start with. Then take it from there, school, pumps, sensors, etc etc. We are lucky that we live in an era when diabetes knowledge and technology is better than ever before and there is no reason at all why your daughter can’t carry on doing everything she did before, hobbies, parties, sports etc. It just takes a bit more planning (and a lot of stuff to carry around with you all the time). And it does get easier with time! My daughter was 6 at diagnosis and has now just finished her GCSEs (10 year anniversary was last week, we had doughnuts!). She says now she doesn’t really mind the diabetes, she can barely remember not having it and it’s just part of who she is. I’m proud of her. How is your daughter taking it so far?
I’ll tag in a couple of other parents @Thebearcametoo @Bronco Billy

 

[SB2015]

Welcome to the forum @JoSwan

I am sorry to hear about your daughter’s diagnosis and totally understand your being frightened by all that is going on. Great to know that you have a good team around you in Menorca, and you will quickly find that there is a lot of experience to tap into on here.

Firstly, it does get easier, and all that you are getting your head round at present will become part of your new normal family life. A diagnosis of T1 leads to a steep learning curve and there is a lot sort out. Once you are home you will get to be in the hands of the paediatric diabetes team who will be there to support your daughter and you in learning how to manage her T1.

I would recommend a book Type 1 Diagnosis in Children Adolescents and Young Adults. It contains clear explanations of what is going on as well as practical tips. It is regularly updated with the latest tech that is gradually making our lives a lot easier.

Once you have settled into things at home you might find it good to attend a Diabetes UK T1 family weekend. This gives your daughter a chance to meet others managing their T1, siblings a chance to talk about how they find things and also an opportunity for you to talk to other parents about the practicalities of managing this.

Come back with any questions that arise. Nothing seems silly to us as we ‘get it’ and know that it can be confusing. Just ask.

 

[helli]

@JoSwan sorry to read your holiday has been interrupted by diabetes.

Thankfully, I was diagnosed as an adult but I still remember not wanting to be too different from my friends. So, I hope you can find ways to allow your daughter to continue with what she likes and not restrict her.
I think it is also important at her age to have role models so I would look to people in the public eye with diabetes such as Este Haim and Nick Jonas. If your daughter is into sport there are International rugby players like Henry Slade and the Spanish footballer, Nacho as well as full NovoNordisk professional cycling team. Or the model Lila Moss who can be seen posing with her Libre sensor and Omnipod pump. Knowing these people are successful and have Type 1 diabetes sends a fantastic message to young people when they are first diagnosed.

 

[Thebearcametoo]

Hi and welcome. I’m so sorry you’re dealing with this instead of enjoying your holiday.

If she had been diagnosed in the UK then a GP or A&E (depending on first contact) would refer you to the paediatric ward and to the paediatric diabetes team from there. You can call your local hospital and ask for the paed diabetes team and explain what’s happened and they will let you know the best way to get on their service once you’re home.

She will need insulin to be able to travel safely and you will need to be confident enough that you can keep her safe to get her home so that may take a little while. Will the hospital there equip you with a meter and testing strips etc?

Once you’re on the paediatric team here you’ll get training and support and her school will also get support for when she goes back after the summer.

We’re here for practical stuff but also to support you emotionally. It is a steep learning curve but you will get the hang of it all.

 

[Flower]

Welcome @JoSwan

I'm sorry you're having to deal with your daughters diagnosis whilst on holiday. I hope things are starting to settle down for you, a diagnosis is a huge shock for everyone involved and a very steep learning curve with no time to take things slowly. The pieces will start to fall into place and the technology available for managing diabetes is developing and improving at fast speed.

I hope your daughter is starting to feel much better. Once an insulin supply is re-established the difference it makes to how you feel is almost instant.

I hope you are soon in a situation to be able to travel home and link into the paediatric diabetes clinic where you live who will support and advise you all in managing diabetes. Wishing you well.

 

[everydayupsanddowns]

Welcome to the forum @JoSwan

Sorry to hear T1 barged it’s way into your holiday, and you’ll be returning with a stowaway

Hopefully as they gently steer her levels back towards the normal range she will begin to feel a bit more herself - those weeks before diagnosis can feel pretty grim when you look back on them (even if you thought you felt fine at the time!). Looking back, you can realise quite how lethargic and poorly you were.

Let us know how things go.

And if you’d like a useful source of reference, many folks here (young and old alike) have found Ragnas Hanas’s book very helpful.

Type 1 Diabetes in Children Adolescents and Young People

 

[Bronco Billy]

Hi Jo

How is everyone?

Now is the most difficult time. I promise it gets easier as you learn more and get more experienced. The good news is that it won’t hold your daughter back. Yes, life needs a bit more thought, but diabetes won’t stop your daughter doing anything. My daughter was diagnosed when she was 6, she’s now 19 and about to start her second year at university. When she was younger, she swam competitively. My son was diagnosed when he was 5 and is almost a black belt in Taekwon-do and wants to go to university next year to study marine biology.

When you get home (if you’re not home now) and have had time to digest things a bit more, you may have lots of questions. Ask anything you like, no question is too silly.