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12 year old son just diagnosed with Type 1

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Type1Son

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Relationship to Diabetes
Parent of person with diabetes
Hello all,

It is a shock to be on this site! My 12 year old was diagnosed yesterday after I took him to A&E with symptoms after speaking to 111. Pretty sure he had it (acetone breath after noticing he was drinking lots) but still a shock not to be told I was overreacting and was wrong! I am absolutely terrified for him despite lots of information from the hospital and I’m sure in a few months it’ll all be a new ‘normal’.

He’s still in hospital at the moment, ketos down from 2.4 to -1 but sugars still 17. I’m come home tonight so my husband can do the nightshift with him.

Any tips, advice or words or comfort would be greatly appreciated!

I think I will soon be a regular on this board x
 
Hello and welcome to the forum,
very sorry to hear about your sons diagnoses.
Things do get better as the days pass so keep that in mind (((((((((((hugs)))))))))))))

Always discuss things with your son regarding his diabetes, it's his condition so it's important he feels as if he is in charge 🙂
Take one day at a time and remember Rome wasn't built in a day.
Your son can live a near normal life with the odd adjustment and live to a ripe old age. Mum and dad might end up growing grey due to teenage years though 🙂.
 
Hi and welcome to the club no one wants to join.

The first few weeks are a lot. You’ll have a lot of support from the diabetes team but even so there’s so much information to take in. Don’t worry if you don’t take it all in to begin with. It will all get repeated. For tonight just rest and decompress a bit.

For the first few weeks my tips are to have a notebook where you can scribble down all your workings for carb counting and to have a section where to you common foods so you’re not doing the same maths time and again (we still refer to ours for things like dominos pizza).

Carbs and cals has been great for us. We use the book mostly but some people prefer the app. There are other carb counting helpers out there but this is the one we’ve used consistently.

There will be plenty of times when you feel out of your depth. Being adaptable and able to go with the flow will help. Lean on your team and don’t be afraid to call their out of hours number if you need to. Knowing there’s back up can take a lot of the stress out of it.

It will be hard. It does get easier and less intense but it is always a worry. We are 3 1/2 years in with no hospitalisations and good control but lots of ups and downs within that (my kid is 12 now).

We’re here to support you as well as to help with questions.
 
Thank you so much for your response Sue. Son is very pragmatic at the moment and already doing his own finger pricks and insulin shots. I’m very proud of him and how he’s reacted so far but prepared for the reality to catch up with him soon.

One day a at a time is very good advice!
 
Welcome to the forum that no one wants to need to join @Type1Son

Good to hear that your son is taking it in his stride at present, and getting on with finger pricks and injection. YES it all becomes easier as it becomes of the ‘new normal’ for your family. there is so much to take in at first but you have already had some good advice, and there is plenty more to tap into. In that notebook @Thebearcametoo has suggested just jot down any questions that arise. Ask your team, ask on here. Nothing is considered silly and there is a shed load of experience to tap into.

They will want to bring his glucose levels down slowly at first and then get them in range. The Diabetes Soecilaist Team are there for both your son and for you, so don’t be afraid to lean on them. They will understand how much there is to take on board at the start.

I would recommend a book for your son and for you.
Type 1 Diabetes in children, adolescents and young adults, by Ragnar Hanas.
It is regularly updated very clear.y explains everything. I was 53 at diagnosis and still found it very useful. I just ignored the bit about starting at school.

Keep in touch and let us know how you are all getting on.
 
Hi @Type1Son and welcome

I too was diagnosed at age 12, 55 years ago, and I would just like to say that I am still living a full and happy life with little that I couldn’t do if I wanted. It is really just a case of being organised, which soon becomes second nature.
(Yes the teenage years and in my case early adulthood, can be difficult but you get through it eventually!)
I have found that knowing all about food and nutrition is absolutely essential so if you didn’t already learn it at school, i would suggest you both set to work on it now - it will be good for the whole family to know what you are eating and why!

Best of luck
 
Just to add to what others have said, the march of improvements in the tools we have to treat diabetes has really been quite incredible over the last ten years and shows no sign of slowing down. We have closed loop systems - which effectively take on some of the work of being our pancreas - close to being available via the NHS. The future is bright!
 
Welcome to the forum @Type1Son

Sorry you’ve had to join us, but also… at the same time, very glad you’ve found us!

Amazing to hear about your son adapting to T1 life so speedily 🙂 Kids are amazing, and so adaptable.

We have lots of long-term T1s on the forum with decades of T1 experience under their belts and few if any nasties to show for their experience. Diabetes can be very serious, of course, but it’s also something that can generally be well managed and made to fit around his life (not the other way around!). It shouldn’t stop him from doing whatever he sets his mind to, and following his dreams 🙂
 
Thank you all so much. He has just come out of hospital this afternoon.

Can I just ask you very knowledgeable people a question? I had hoped to get my son on CGM but have been told by his nurse that we will have to wait 3 months for a Libre and have to show 8 finger pricks a day in that time (that’s not an issue). A Dexcom will not be funded at all nor will an insulin pump. It seems he’s not eligible due to being over 12 (by one month!).I am quite panicky about overnight readings and his blood sugars going up or down while he sleeps and I gather these have alarms?

I have been told on a different forum that he should have got a Libre straight away if we wanted it which I am absolutely furious about and as have been considering self funding a Dexcom and Omnipod which will cost £400 a month I think but we’d have to work it out somehow for my sons comfort. Nurse said insulin pumps are dangerous and totally dismissed them which I was surprised about!

Any advice would be welcomed.
 
Yes your son is entitled to a Libre or CGM NICE guidelines have changed all type1's are entitled to Flash monitors or CGM.
Same again about a pump the nurse is talking a load of BS never take no for an answer.
Pleased your lad is home safe and well.

I have been told on a different forum that he should have got a Libre straight away if we wanted it which I am absolutely furious about and as have been considering self funding a Dexcom and Omnipod which will cost £400 a month I think but we’d have to work it out somehow for my sons comfort. Nurse said insulin pumps are dangerous and totally dismissed them which I was surprised about!

Any advice would be welcomed.
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You wont be able to self fund the pod as not allowed unless you have a consultants backing.
The DSN (Dumb silly nurse) isn't real or even living in this century. I would make a formal complaint about her comments.
You can also get a free trial of the libre from the manufactures, pop over to their website.
 
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Type1Son said:
I had hoped to get my son on CGM but have been told by his nurse that we will have to wait 3 months for a Libre and have to show 8 finger pricks a day in that time (that’s not an issue).
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Those were the old guidelines. The new ones just require a Type 1 diagnosis. Some regions are still messing around a bit, but it's certainly worth challenging.

Four (including Libre 2 and Dexcom ONE) are available on prescription (so his GP can prescribe them). Others need to come via the hospital team.

https://twitter.com/x/status/1562012679933411329
 
Sorry to hear you’ve had a bit of a negative conversation around tech. Unfortunately these do seem to be far more common than they should be, especially now that the guidance has changed.

Of course the guidance is only that - guidance and recommendations for wise spending of health budget on things which work.

It isn’t (yet) legally binding or mandatory, and the money has to be agreed by your local CCG. There *was* mandatory funded Libre2 guidance - but that has now been superseded with wider access direct from GPs.
 
Type1Son said:
Nurse said insulin pumps are dangerous and totally dismissed them which I was surprised about!
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What!!!! I am amazed at this comment.

A well managed pump with the appropriate support in setting it up and learning how to use it can make life a lot more flexible. I would certainly ask to see someone else. Was this a nurse at your GP pratice or a specialist nurse at the hospital? I would be so surprised by any current DSN making such a comment. Do follow this up.
 
Ahh bless you, I have a 12 year old son, luckily I’m the diabetic not him, but I can only imagine all the thoughts, feelings and worries your going through right now. Make sure you stick around and ask absolutely anything. You will get your head around this and kids seem to adapt really well. There will always be someone on here for practical advice and emotional support. You got this momma…. Now get some rest xx
 
It’s very early days so don’t get too worried yet. Things will change and you will likely end up with a Libre and be offered a pump at some stage too. Right now it’s no bad thing to get the hang of finger pricks and injections while they work out his ratios and get some data. You’ll have a team around you and if for any reason you don’t like your assigned nurse you can ask to be switched to someone else on the team.

Funding for dexcom here hasn’t been approved through clinic yet we keep getting told it will be done by next clinic but they’ve said that for the last 2 (clinics are every 3 months) and it’s only a dexcom one not the G6 - we use the G6 for the ability it has to predict hypos and pay for it using DLA. 3 months after diagnosis he’ll be eligible for DLA and your team should be able to help with the application. Make sure to get the forms in good time as they’re a beast.

With the pumps it’s common for it to take time. The pump is only as good as the information you put in the algorithm and you need to collect data of glucose readings and insulin amounts for that. Once a pump is agreed it can still take months to actually get it. NHS funding for under 12s is automatically approved so it’s easier to get one but our team will put together a good argument for their older kids but that’s based on readings etc, being very sporty or other need. Again that takes time for them to get to know him and what his needs are. Be patient. Your pump will come.

No tech is perfect and whilst the tech can give better management it’s often another learning curve on top of the initial learning you’ll be doing. We switch between using dexcom and not and using the pump or not. Overall we’ve been without additional tech more than with.
 
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