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Newby to the Group

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Jackstar

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Hi, I've joined the group because we found yesterday that my youngest grandson has type 1 diabetes. I know the changes to his lifestyle & the rest of the family will be huge. I am very worried about him & suppose I'm looking for some sort of reassurance that things will be ok.
Thank you
 
Jackstar said:
I'm looking for some sort of reassurance that things will be ok.
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Things probably will be OK. It's not a good diagnosis, but it's a manageable (though challenging) condition.

It takes some spontaneity out of life: we have to manage our own blood glucose and that takes some mental effort and planning (to make sure we have the appropriate insulin available wherever we are, and something to eat to raise blood glucose if needed).

But given that, we can (and do) live full lives. I dance tango socially and in London I guess there's about a thousand decent dancers, and I don't know anyone else in that community with Type 1. I'm sure there are others (and it's most likely I've been at dances with them (quite possibly I've danced with them)), but there's not usually a way to know.

There's a joke that there's a cure about 10 years away, and that's been a joke for over 40 years. But there are ongoing incremental improvements in care that show no signs of slowing down. What I take for granted now is unimaginably better than what I had when I was first diagnosed in 1981, and there's much better already here (I just don't quite qualify for it yet).
 
Jackstar said:
Hi, I've joined the group because we found yesterday that my youngest grandson has type 1 diabetes. I know the changes to his lifestyle & the rest of the family will be huge. I am very worried about him & suppose I'm looking for some sort of reassurance that things will be ok.
Thank you
Click to expand...

Things will be ok @Jackstar The early weeks are hard because it’s a huge change and a lot to learn. It’s also a big emotional shock. But gradually things get easier month by month. He’ll learn how to fit diabetes around his life, not the other way round.

If his parents need support, Diabetes U.K. has a fantastic Careline (number top of the page) and this forum is also great for emotional support as well as practical advice.
 
Was a major trauma for me too - difference was, I was 22 so able to apply logic. I'd been feeling so utterly c**p (still no other word to convey how I felt) for months by then, it was actually a huge relief to be diagnosed with something that wasn't going to drop me dead anytime soon. Gosh - I actually started to feel better literally within a few minutes of being given my very first jab of insulin! PITA needing to boil up my wee every morning to test my blood sugar then the faff of drawing up insulin in a syringe and learning how to inject it, and then getting hypo symptoms - false hypos though as my body by then was so used to running with too high blood sugar, it didn't enjoy having that lowered to something more normal, one little bit.

Of course - it gets better! There have been so many advances in treatment of diabetes (of all Types) since then, which the boy and his parents get the benefit from PDQ, now. I think about the only job he still won't be able to do now, is remote solo working on the railways - so eg train driving (including Tube trains) and solo signal box operation. Don't think there's all that much these days we are actually completely barred from doing whether for work or for leisure. His hospital team will liaise with his school (whatever age he is) to get a sensible regime set up there to assist him.

Buy his parents this book -

https://www.amazon.co.uk/Diabetes-C...1+diabetes+ragnar+hanas&qid=1661261309&sr=8-3

This is the latest edition, it gets revised regularly hence why it's more expensive than previous editions. Written in English not medicalese, specially for parents of and their Type 1 children!
 
Hello @Jackstar and welcome to the forum. Sorry to hear about your grandson's diagnosis - how old is he?

As others have said, things will be OK. There will be some changes, but they may not be as big ones as you imagine. For instance, he will still be able to eat whatever he wants, he'll just have to learn how to work out how much insulin he needs for it. As Bruce Stephens said, there will be a bit less spontaneity.

But he'll still be able to live a normal life, and do all the normal activities most people do, and there are very few jobs he won't be able to do (there are professional sports players with type 1 - and we've even had a type 1 Prime Minister). There are people here who've had type 1 for 50 years or more, and complications in well-managed type 1 are very rare.

I'm going to tag @Thebearcametoo and @Sally71 as they both have children with type 1 and should be able to give you some reassurance from the perspective of parents.
 
TheClockworkDodo said:
Hello @Jackstar and welcome to the forum. Sorry to hear about your grandson's diagnosis - how old is he?

As others have said, things will be OK. There will be some changes, but they may not be as big ones as you imagine. For instance, he will still be able to eat whatever he wants, he'll just have to learn how to work out how much insulin he needs for it. As Bruce Stephens said, there will be a bit less spontaneity.

But he'll still be able to live a normal life, and do all the normal activities most people do, and there are very few jobs he won't be able to do (there are professional sports players with type 1 - and we've even had a type 1 Prime Minister). There are people here who've had type 1 for 50 years or more, and complications in well-managed type 1 are very rare.

I'm going to tag @Thebearcametoo and @Sally71 as they both have children with type 1 and should be able to give you some reassurance from the perspective of parents.
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Morning, thank you for the very positive replies, it helps calm the fears a little bit. He'll be 10 in November, a bit of a strange fella . I did speak to him yesterday & he said he quite likes the feeling of the injection in his stomach. We have been told we did well to get him as quickly as we did. He is in the honeymoon period, his pancreas is still producing small amounts of insulin (10%) & they think that by the time it stops he should be into a routine to manage is levels.
We thought he had a urine infection & submitted a sample to the docs on the 18th & it came back clear but apparently they don't test for sugar if you think it's an infection. Obviously, in current times, you don't get to see a GP for this, only hand over the sample to the office.
We were away for the weekend, in fab Airbnb where the living/kitchen area was one large room. I knew he had been drinking more but this was when I noticed how much, I was shocked. On the Sunday evening we were on boat trip & he seemed out of sorts, very quiet, cold, a bit spaced out but was ok after we got back & had some supper. I rang my daughter & she manged to get a dip test on the Monday, his reading was 42 with ketone in the sample.
Hopefully coming home today, he's due to stay with us on Friday night, I'm a bit nervous but if he still wants to stay I'll be well prepared.
 
Welcome to the forum @Jackstar
I know it is a shock for the family when a child is diagnosed with Type 1 diabetes but, as others have said, it does not have to mean big changes. Your grandson will be able to eat what he wants, he will still be able to play all the games he wants, he can go on to be an engineer, tree surgeon, doctor, politician, footballer, climber, rugby player, actor, rock star, grand prix driver, ... I know of others with our condition who have done all of these things.
There is a bit more planning but I don't feel it has taken away my spontaneity.

For me, it is important to remember that treatment for someone with Type 1 is improving fast. I have seen massive changes in the 20 years since I was diagnosed which makes life much easier and, in your grandson's life time, there will be even more improvements. Yes, diabetes still takes up brain power I would rather be spending on something more fun but it has never ever held me back.
 
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My son was diagnosed just before his 9th birthday. It’s never a good time to get diagnosed but at least by this age they can understand what’s going on and be involved to a degree with their management. It will take time get into the groove of it all and it’s a steep learning curve but you will all get the hang of it. Make sure you have some digital kitchen scales and it’s a good idea to have your own copy of Carbs and Cals to help do the carb counting.
 
Thebearcametoo said:
My son was diagnosed just before his 9th birthday. It’s never a good time to get diagnosed but at least by this age they can understand what’s going on and be involved to a degree with their management. It will take time get into the groove of it all and it’s a steep learning curve but you will all get the hang of it. Make sure you have some digital kitchen scales and it’s a good idea to have your own copy of Carbs and Cals to help do the carb counting.
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Thanks for this, do you get the Carbs,&Cals from the team or can I buy it,?
 
Well, we're making a lot of presumptions - I should think at the mo he'll be on fixed doses and therefore should have also been told the amount of carb his meals should contain - therefore you'll have to learn how to calculate that in whatever you're thinking of feeding him on Friday. Is he on MDI or not yet?
 
trophywench said:
Well, we're making a lot of presumptions - I should think at the mo he'll be on fixed doses and therefore should have also been told the amount of carb his meals should contain - therefore you'll have to learn how to calculate that in whatever you're thinking of feeding him on Friday. Is he on MDI or not yet?
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I was assuming the book would be as a gift rather than something that might be needed imminently.
 
trophywench said:
Well, we're making a lot of presumptions - I should think at the mo he'll be on fixed doses and therefore should have also been told the amount of carb his meals should contain - therefore you'll have to learn how to calculate that in whatever you're thinking of feeding him on Friday. Is he on MDI
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trophywench said:
Well, we're making a lot of presumptions - I should think at the mo he'll be on fixed doses and therefore should have also been told the amount of carb his meals should contain - therefore you'll have to learn how to calculate that in whatever you're thinking of feeding him on Friday. Is he on MDI or not yet?
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He is on MDI, coming home today so will find out a lot more later.
 
If he is staying with you, the main things to be sure of are that you have plenty of hypo treatments (very fast-acting carbs, eg glucose tabs or gels, jelly babies, or pure fruit juice) and that you and he both know how to recognise hypo symptoms and if he has any of those to test his blood sugar and treat a hypo (a reading below 4) immediately if he has one.

High blood sugars are less of an issue in the short-term, but the lows do need to be noticed and treated right away as they could be dangerous if left. But don't be tempted to over-treat, that will lead to spikes! - the rule to treat a hypo is supposed to be 15g fast acting carbs then wait 15 minutes and test again, after that it's possible he'll need another hypo treatment, or he may just need some slower acting carbs (such as a plain biscuit), or not need anything more.

Hypo symptoms vary from person to person, but common ones include being sweaty, dizzy, spaced-out, wobbly, shaky ... and becoming completely obsessed with trivialities (eg for me that might be thinking I must look at every thread on this forum before I test my blood sugar!). No doubt others will think of ones I've missed.
 
I've always felt (literally from Day 2 on on insulin!) and still do from time to time, that I have beads of sweat appearing along that space between the upper lip and the nose. Most odd sensation since it's never been a feature of my sweat glands before or since and still isn't. It must be because of summat or other specifically, but can apparently happen whatever hypo level I just happen to be and in quite different circs surrounding the low BG.

Each of us is different! so he will be too.
 
Lucyr said:
I know T1s that do deep sea diving. We probably are banned from space travel though.
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Might still be banned from the army? When we had army reserves medical corp came in for a recruitment drive when I was a student 20-ish years ago they said that anyone with a medical condition where they would quickly become unwell without medicine (including insulin dependent diabetes) couldn't sign up.
 
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