ds 8 just diagnosed with type 1 diabetes

[goodgrief54]

Hi. A week ago I took my son to the gp hoping to be told that I was worrying over nothing. Unfortunately not and he was diagnosed with type 1 diabetes.

All trying to come to terms with changes and I couldn't be prouder of my ds who on the whole taking it in his stride although at times understandably becoming v emotional.

Anyone else got experience of this and how you have coped? How much have your lives changed as a result?

Thanks

I got diagnosed with type 1 at around the same age as your DS. It's just a way of life for me now. As far as I'm concerned my life is completely normal and full. I don't feel I've missed out on anything (apart from having a waterbirth maybe!). I still went to uni, got drunk, survived, had kids and got married :)

Treatment is a lot better now that it was in the 1980s. I don't have a pump yet but a lot of people rave about them. I'm on MDI and I take novorapid and lantus, so I don't find that too restricting.

Have they put DS on basal bolus yet or did they start him off on the mixed insulin?

He is on the basal. He is having a pump next Tuesday which we hope will give him more freedom.

May I ask you his symptoms & the test the GP did?

He was drinking loads and weeing a lot too including wetting the bed. He has not felt ill at all at any point. I did not realise it was likely to be connected until after diagnosis but he also got very angry one night, which was v unlike him, this is a sign of high blood glucose levels too.

The gp tested his wee and in the hospital they checked his blood sugar levels via a finger prick.

That's impressive that he's getting a pump so quickly! Are you in the UK?

It's also good that he was diagnosed quickly. With me, it was missed and I ended up in a coma!

Ds2 was diagnosed at 4.5; he is 6 now. He has a pump. Yes, it changes your life. It's kind of like having a newborn - huge learning curve, have to think and remember and plan all day and night, loads of kit to carry around, lots of anxiety and randomness - and eventually you realise this is your new normal, and you can cope.

The mailing list at Children With Diabetesis excellent - www.childrenwithdiabetesuk.org/children-with-diabetes-email-and-mailing-lists/mailing-list-england

Type 1 Diabetes by Ragnar Hanas is a good book. The Leeds Insulin PumpWorkbook (free download online) is useful too.

What hospital are you at?

Hi. Thanks for your replies.

We are in Nottingham. Ds has been put on a trial which is the reason why he has been given the pump so early on. The trial is looking at whether it is better to be on pump or injections from diagnosis.

I feel so helpless. I also work full time so worried if I can do this going forward and if not how we will cope financially. I then feel guilty for worrying about money at a time like this.

I love my ds desperately and hate that we could cause him harm if we do anything wrong.... do you ever stop worrying or at least learn to control it??

Well, I worry less than I did to start with. Newborn baby analogy again! It is overwhelming to start with.

Do you know you can get disability living allowance for him?

I think you have to accept that his levels won't be perfect all the time. I still have highs and lows and sometimes they just happen for no reason. BUT I've had type 1 for 30 years now (!) and the only complication I have is some mild eye damage to one eye which has been lazered and doesn't affect my vision. But that only happened very recently.

By the time I was at high school I was totally responsible for my diabetes, although my mum still worried and hassled me about it!

Best advice I can give is test lots. Never leave home without his testing kit and some lucozade. If he's got a pump then you won't have to worry about carting insulin pens too. Hypos aren't nice but they don't do us harm as such.

The toughest thing is when you get sick as illness can mess with your levels big style. Thankfully though it's the summer and by the time all the coughs and colds surface again it'll all be much more familiar.

I know my diagnosis was much tougher on my mum than it was on me!

Hi,sorry to hear of another T1 diagnosis.It is a big thing & it will all be very new & scary & raw for you at the moment but it does get a lot easier & as Jelly says it will become your new normal. Life does go on & your son will be able to do everything he wants - it just takes a bit more planning! Great your DS is coping well with it - they are amazing.
Ds also diagnosed at 8yo & now nearly 12y. He started on injections & then pump after 6 months or so & we also use a continuous glucose monitor as he has very poor hypo awareness. Pump is great & my son wouldnt give it back!
Second what Jelly says about Children With Diabetes email list & Ragnar Hanas book. Also lots of online support through facebook groups,JDRF etc & think contact with other parents of children with diabetes is what has kept me sane at times. It helps to be in contact with other people who know what it is like & get it.( Also East Midlands Paediatric Diabetes Network facebook group).
Also helpful to meet other families with T1 children - we have been to a conference called Friends For Life in Windsor which was fab as lots of children there all testing & comparing pumps etc. Also JDRF Discovery Days.
Has he gone back to school yet? Make sure school supports you with his care. Think that was my scariest time when DS went back to school & I was no longer in complete charge of his care. DS now at secondary school & generally copes very well. Diabetes team at QMC are very good I think.
We are also in Nottingham so if you wanted to meet up & chat would be happy to.

Yes , absolutely agree with Paddy - T1 diabetes is a fickle thing & levels dont walways do what you expect so dont beat yourself up about it as long as overall your control is ok. Test lots is good advice & get you ds used to that as being completely routine. You will start to learn what different foods & activity do to levels & how to best manage things.

Thanks kp. As much support as possible is v much appreciated. I have now joined both groups and bought the book.

Can I just ask if the continuous glucose monitor has been given on nhs or is that something you have bought privately?

My DD (now 22) was diagnosed with type 1 when she was 8 yrs old ( is it something to do with that age?). We were already living with her epilepsy and global delay so our lives had already been turned upside down.

Even with her SEN she managed her blood tests and infections early on.

She has since developed insulin resistance so takes glicazide orally.

I think help is a lot different these days but we did have a community diabetes nurse who stayed with us until DD was transferred to the young adult service.

We have self funded the Dexcom CGM for the last 2 years or so. We have been waiting for funding for a year and a half and in principle ours had been agreed but recently the funding pathway has changed so to get the funding we will need to use an integrated pump system(Animas integrates with Dexcom) so would need to swap from our Medtronic pump. Really frustrating as son very attached to his Medtronic pump so we are just deciding how to play it.
Also Nottingham Type 1 Kids is a support group who meet up every so often & also have a facebook group. Never managed to get to a meeting myself but good people running that.
And do let me know if you want a chat & a coffee or for your son to meet someone else with a pump - more than happy to. Remember only too well how overwhelming it is in the early days.