10 year old Son diagnosed T1D

K

Kiwiwasp

New Member
Relationship to Diabetes
Parent
Hi all. First post. We are parents of a 10 year old boy who was diagnosed T1D two days ago (Sunday). We now realise our son was showing all the symptoms of diabetes over the past 5-6 weeks but put his extra thirst, toilet stops and accidents down to hotter weather and school holiday sports clubs. Then a 10 night holiday in Madeira where he spent 10 hours a day in the pool - hence some weight loss. But he started being very lethargic and then vomiting so wife phoned 111 and was given an A&E appointment. Sample taken and sent immediately to main hospital where he was admitted to critical care with BG 22 and ketones 7. We were then given the news.

I have been ignorant to diabetes all my life so didn’t really understand what it was or meant and couldn’t comprehend how a urine sample could be so finite. I questioned a couple of doctors only to be firmly told ‘your son has Type 1’ - period. The next 12 hours whilst they took over to stabilise him was awful. Google doctor told me everything I ‘didn’t want to’, but needed to know and even though everything says ‘it’s no-bodies fault’ we couldn’t help but blame ourselves. And when our son come around and he started to understand what was going on - he looked at me and asked ‘ is it something I did wrong?

We are now 2 days into what is to become our new ‘norm’. He’s been stabbed more times than I care to count, starved whilst being rehydrated and BG’s brought down, is in hospital until the end of the week at least, and he keeps on smiling. I swear if he wasn’t being such a trooper about it, I don’t know how we would’ve coped.

His BG is still high and has constant corrections whilst they figure his dose, but 24 hours in he’s been doing his own prick tests and yesterday was doing his own insulin. Was hard yesterday when we took him out for some fresh air and went to Tescos and he stood in the deli section reading sugar and carb contents trying to work out what he can have as free snacks. He’s having a freestyle fitted today with a view to moving to a pump in a few weeks.

The NHS staff (James Cook) have been absolutely fantastic. And the ongoing support is already proving to be second to none. Within 20 hours of being diagnosed the diabetes team had contacted his school and arranged for staff training and a dietician visit (small rural school), we had met 3/4 of the team and are meeting more and more as we learn ‘the new us’ before we go it alone.

Each day it gets easier for us mentally, but in the back of my mind I keep thinking ‘why’ and then just feel sick for what he has to go through for the rest of his life.

I get that it will get easier, but right now, this minute, it’s not, and it feels like my head is going to explode and just want to scream.

But as a family we will continue to say - ‘We got this!!’
 
Hello and welcome. This is clearly an enormous shock for you all, but you have come to the right place for support. I'm so pleased you have had such great support from the NHS and ongoing staff. Please ask any questions you may have. I'm sure plenty of Type 1 members will come along to help.
I know of a gentleman who was diagnosed Type 1 at a similar age to your son. He went on to represent his country at junior level in his chosen sport, and is now a father and grandfather, leading a full active life. Best wishes
 
Hi and welcome. It will take a while for his levels to settle (and they don’t want to bring them down too quickly or he’ll feel rough). The good thing about a paeds diagnosis is you get lots of support and training (unlike adult diagnosis). My kid was 8 when diagnosed. We found it a huge adjustment and learning curve but he took it in his stride. You’ll get used to carb counting and weighing food etc. The carbs and cals book is still used frequently. Having a sensor will be a huge comfort for you so you can check him without disturbing him. I don’t know if the libre has a parent app (we have Dexcom). My kid’s big brother was furious that the youngster got a smart phone before the age he did

The ‘why’ does fade. Sometimes you can see a family history but often not. Sometimes you can pinpoint the infection that may have ‘switched on’ the type one but sometimes not - if my kid was ill it was the mildest childhood virus not anything we could identify. And yes the weight loss is often put down to other things and the thirst etc are clearer in hindsight when you then find out they’re symptoms but we’re not diabetes nurses so not identifying the symptoms isn’t a failure.

The great thing about being diagnosed now is that the tech makes things easier. It’s still never ending and there will be times when it’s a struggle. Try not to focus on the finger pricks etc as being painful. It obviously does hurt a little but they aren’t major hurts and the drudgery of having to deal with diabetes day after day is more of a PITA for the kids.

We’re here to support you as well as to answer questions so keep communicating.


I promise you it does get easier. But it does feel like a lot to begin with both the worry and learning so much new information.
 
Hello & welcome @Kiwiwasp

A diagnosis is a huge shock to everyone concerned with no time to gradually adapt. It is a case of getting on with it & bit by bit the pieces of the puzzle will start to fall into place & things become less overwhelming. It’s good to hear what a great team you have and access to amazing tech which should hopefully reduce the burden ongoing.

Your son will be feeling so much better with a re established insulin supply- it’s not until you start to feel better that you realise what a struggle things had been- but it takes a while to adjust insulin doses & for levels to settle.

Dealing with diabetes is a real head filler but I hope things start to fall into place & your son is soon home & feeling much better.
 
Hi @Kiwiwasp and welcome!

As many others have pointed out, finding out the diagnosis is a bit like being thrown into the water and being expected to instantly swim an Olympic swimming pool. The best you can do right now is float, become aware of your surroundings and slowly start going in the right direction.
It's amazing to hear that your son is taking this as a trooper, he's got his family to support him and it sounds you have a great team around you as well. Don't be afraid to bombard them (or the forum) with questions, even if they'll be repeated. Any worries, blips, celebrations - if you're happy to share them, we're happy to hear about them and support you in whatever way possible. Things will eventually settle and the 'new' will turn into the 'norm' as you get the hang of things.
 
Just want to say welcome from me too.

I was thankfully much older at diagnosis but my heart really goes out to parents and children experiencing this. Great to hear that you have good clinical support over at Teesside (I am with Durham Hospital, so not too far away). As you appreciate, it does gradually get easier and here on the forum we will be happy to support you in any way we can. It is a gold mine of practical experience and knowledge, so don't be shy about asking questions, over and over if necessary until you understand. Diabetes is incredibly complex and confusing and contrary at times, but you can live well with it and in fact many people become more healthy as a result simply because they have to pay more attention to what they eat and taking regular exercise really helps, plus it really sharpens up your maths, problem solving, decision making and planning skills!

Sounds like your son is taking it really well at the moment but there may be a spell when it suddenly hits him that this is for life rather than just a normal short term illness and I am sure other parents here will be able to help you through that phase if/when it happens, but sometimes helpful to be aware that it might. Also important to know that diabetes can be highly individual, so whilst we all have things in common, there is also a lot of individual variation. What works for one person, may not work for another and the only real way to find out what works for your son will be through trial and error. Don't let that worry you. You learn more from the errors than you ever do the successes. None of us get it right all the time and trying to do so will send you insane. If you can get it right most of the time you are doing really well, but experience is what teaches you best. The technology helps enormously and hopefully, if your son has that sort of interest it will appeal to him and he will take to it. For me it changed my outlook from managing a serious health condition tand it being a real chore to it becoming a sort of long running computer game that I play against myself to get better and better results. I am not sure that will make sense to you, but when you get the Libre you will hopefully find it fascinating as well as incredibly useful and informative.
I think what strikes many of us is that we never knew what an incredibly clever little organ the pancreas is and when we have to take over this rather tricky part of it's function manually, you really appreciate the job it used to do for us.

((((HUGS)))) to you all. A new diagnosis is incredibly overwhelming and scary but we are here for you whenever you need to talk or ask questions or just blow some steam!
 
It’s not a club anyone wants to join, but welcome to the forum we are here to help.

He can have a very active, busy, enjoyable, healthily and long life. He might need to plan and organise things a bit more but anything he wanted to do before he still can.

There’s international experts and professionals in all sorts of jobs now with type 1 from NASA, to international sports winning competitions at the top of their field to firemen and NHS staff. He can do anything!

Don’t trust Google but JDRF and diabetes UK and a load of other charities, the NHS are all great sources, as are other people with it or parents of other children.

You will all be fine, give yourself time, small steps. Ask questions and lean on his team as much as you can, they can help, and we can’t do it on our own.

Take care all of you.
 
Hello and welcome to the forum!
My daughter was 6 at diagnosis. My mum has had type 1 since before I was born, so I was always well aware of the symptoms, but I still think I was slow to spot it when my daughter developed it! I could smell sugar (ketones) on her breath but as she seemed fine otherwise it didn’t seem like much to go to a doctor with. The thirst and tiredness I didn’t pick up on until it got really bad, and I think I’ll always feel as if I should have got her to a doctor sooner. However, no point feeling guilty about it. It really is nobody’s fault (probably genetic in my daughter’s case, and we think a virus triggered it), but there isn’t always an obvious cause, it’s just rotten luck. It sounds like your son is being an absolute trooper, and you are getting excellent support, so that’s a good start. It does take time to get your head round all the information though, just try to take it one step at a time and it will gradually become more natural. My daughter went on a pump only 8 days after diagnosis (we were lucky and there was a trial starting in newly diagnosed children comparing pumps with injections, and we got picked for the pump), so we were barely coming to terms with the diagnosis and injection regime and then had to learn a whole load of new stuff, I honestly felt like my brain had hit a wall and if you’d asked me what day of the week it was, I’d probably have said “sausages” or some such thing! But you get through it because you have to. Keep asking questions and accept all the help you can get.

You also have to grieve, for the old life which you don’t have any more. This can take time and can’t be rushed, for me it was 6 months before I could cry at all, and then another 6 months before I really let it out properly; I was a total basket case for about 3 weeks then, but after that then felt stronger and able to deal with it better, and haven’t looked back. I would hope that most people can get through that phase quicker than I did, but everyone is different!

My daughter is 18 now and just gets on with it on her own, apart from her occasionally asking me for advice and me sorting out her prescriptions, I have hardly anything to do with it any more. I think she can’t really remember a time before diabetes and it’s just part of life for her. She’s had various mental health problems in the last few years (absolutely not diabetes related) and is currently in a wheelchair (again nothing to do with diabetes) and the diabetes is probably the easy bit in all of that, because she’s so used to it. It does get better - in the meantime keep asking questions! Good luck 🙂
 
I was dianosed when I was 2 in 1968 and like all of us including yourself does nto want anyone to get it, but things happen and your not at all to blame! Tecnologies now is a lot better than its ever been and will carry on to get better in time. It will beome easier but sorry to say it will never go away for your son, I hope you will soon get used to the club as Im still in it after 54 years. I also hope he will soon be getting on things that will help improve is daily life. We are all here to help so just ask we dont care if its silly or not as nothing is silly in not knowing how to cope with it. Good luck and hope all goes well for you! I'm also hoping this month to be getting off pricks for the first time in 54 years too and I hope soon for your son too!
 
sorry to say it will never go away for your son

Hopefully that won’t be the case @thediabeticway We’re getting closer to a cure every day 🙂 I know we’ve waited a long time and it’s always “five years away”, but I think we’re close as so much more is known now and so much research is going on.
 
Thank you all so much for your comments, words and for sharing your experiences. After 5 nights in hospital, we finally came home yesterday. He was fitted with the Libre 2 the day before and what a difference that’s made already (albeit we learnt fast not to watch his numbers continuously as they bounce all over). We will be choosing a pump in a few weeks.

Being home was surreal. Stepping out and suddenly having to think for ourselves. We are determined to ‘do it alone’ for the next few days until our first appointment and to try not to lean on the team for every small question - they’ve already taught us the answer, we just need to remember it .

It’s amazing how little people/friends know about T1D. Almost everyone we’ve spoken to ‘knows someone’ - often many who have it (apparently), but I don’t think they truly understand the full extent of what it is and what it means. As said previously, I was one of them.

The emotional rollercoaster is real. Neither of us have really been able to ‘let it out’ as it were and as @Sally71 said in her post, it will come - sometime down the line.

For now, we will carry on letting this all absorb and accept our new way of life. He’ll be back in school later next week - once the staff have been trained and then we can start getting back to the norm.

Our little trooper just keeps on soldiering on!!

K
 
It’s absolutely fine to phone your on call number even with little queries. That’s what the team is there for. And you should have the paeds ward phone number for out of hours too (although your general paeds team won’t know as much as your on call team). In the first few months we called our out of hours several times. I don’t remember the last time we called them (been diagnosed 5 years) but they are honestly glad to have your call instead of you sitting at home worrying.
 
Thebearcametoo said:
It’s absolutely fine to phone your on call number even with little queries. That’s what the team is there for. And you should have the paeds ward phone number for out of hours too (although your general paeds team won’t know as much as your on call team). In the first few months we called our out of hours several times. I don’t remember the last time we called them (been diagnosed 5 years) but they are honestly glad to have your call instead of you sitting at home worrying.
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Apart from the CGM (Libre 2) constantly losing connection, 24 hours free and we seem to be doing ok!!! His BG is still high averaging around 15 but we know this is the adjustment phase whilst the team establish his ideal ratio.
 
“It’s amazing how little people/friends know about T1D” - ooh, you’ll get loads of people who think they know all about it because their brother’s friend’s aunt’s neighbour has got type 2, and actually they know nothing at all! Be prepared for all sorts of comments and ignorance. One of my favourite ones was when a friend watched me inject my daughter, and then said “I don’t know how you do that, I know I couldn’t”. Yes, well, if you were given the choice that we’ve got, i.e. you inject them or they die, I think you’d find you probably could! Same friend also laughed at me once and reckoned I looked like a junkie when I was carrying a sharps box to the doctors for disposal. I know she only meant it as a joke, but still. I’ve had to deal with ignorant teachers who wouldn’t let my daughter eat biscuits at a party when she’d already given herself insulin for it and didn’t believe me when I said we had methods for dealing with it, with the result that I had to shovel sugar down her throat for nearly an hour to prevent her going hypo. A French teacher who brought in French food for the kids to try, would only let my daughter’s class have the cheeses and not the pastries; I went to see her to ask what they were having so that I could work out a carb count and get a plan in place for my daughter to have them, but every time I mentioned the word “insulin” you’d have thought I’d sworn at the woman and exactly what I didn’t want to happen, happened. With the result I think that some children felt it was my daughter’s fault that they didn’t get pastries to try. And so on and so on. Thankfully once she transferred to secondary school things seemed to get better, and I still work at the primary school she attended and they’ve got things much better sorted there now for diabetic children (the training used to be just a case of the nurses going in to the school, and then me going through it with subsequent teachers, they all have a proper training day now I think). But sadly you’ll always get people who think they know better than you when they don’t, be prepared to just smile and carry on doing what you’re doing! I don’t mind people asking questions if they are genuinely trying to understand, some will never listen though. Just find what works for you and then forget everyone else!

It can be a bit isolating though, if you’re having a bad day and just want to rant and your friends try to understand but they don’t really have a clue what you’re going through. Maybe ask at the hospital if they can put you in touch with any other families. For a while there was a group of type 1 kids and their parents from our hospital who used to meet up once a month, sometimes just at a community hall but they would also organise pantomime trips, camping and other things sometimes. It’s good for the parents to get together, swap stories and tips and just have a bit of a moan, and everyone else understands exactly what you are going through because they’ve done it themselves. And it’s great for the kids because they can all finger prick and inject/bolus together and there are no questions. And then you get a pump or Dexcom alert and everyone is hastily checking whether it’s their child or not! My daughter is pretty independent now and we lost touch with our group after Covid, but for a few years it was a really good thing to belong to. Definitely worth finding out if there’s one near you.
 
Kiwiwasp said:
It’s amazing how little people/friends know about T1D. Almost everyone we’ve spoken to ‘knows someone’ - often many who have it (apparently), but I don’t think they truly understand the full extent of what it is and what it means. As said previously, I was one of them
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I think is such a common experience. Like you I knew nothing about T1 when diagnosed (aged 53) and others are in the same boat. They often tell me tales of people who have cured theirs, or other tales but it usually Someone with T2.

Do lean on your team for whatever you need. They sound like a good one, and they will be used to the shock and the bombardment of info. Also plenty of experience to tap into on here.

I also recommend the Ragnar Hanas book Type 1 Diabetes in children, adolescents and young adults. Very easy and good reference book which is regularly updated with latest tech.

Keep the questions coming or simply have a rant if that helps. We ‘get it’.
 
And then you get all the ones who seem to find it helpful to tell you about all the people they knew who died of diabetes… yeah that’s just what you want to hear right now!! Ignore them - chances are again they don’t know what they are talking about. Type 1 used to be life-limiting, but these days with modern insulins, technology and just more knowledge about the condition itself, there’s no reason why your son shouldn’t live as long as anyone else, as long as he takes care of himself. And we can always hope for a cure during their lifetime, although I don’t think that will happen any time soon, sadly.

I thought I knew all about it because of my mum, but then we were given all sorts of mod cons and taught completely different methods from what she does so it was still a massive learning experience for me. That’s not to say mum’s way is wrong, but she was diagnosed in 1967 when there were only mixed insulins, no home finger prick testing or pumps or sensors. She still uses injections, modern insulins now but still sticks to fixed doses, has steadfastly refused to adapt to modern times and only does occasional finger pricks and turned down the chance to get sensors. And she’s still here, about to turn 80
 
Kiwiwasp said:
Hi all. First post. We are parents of a 10 year old boy who was diagnosed T1D two days ago (Sunday). We now realise our son was showing all the symptoms of diabetes over the past 5-6 weeks but put his extra thirst, toilet stops and accidents down to hotter weather and school holiday sports clubs. Then a 10 night holiday in Madeira where he spent 10 hours a day in the pool - hence some weight loss. But he started being very lethargic and then vomiting so wife phoned 111 and was given an A&E appointment. Sample taken and sent immediately to main hospital where he was admitted to critical care with BG 22 and ketones 7. We were then given the news.

I have been ignorant to diabetes all my life so didn’t really understand what it was or meant and couldn’t comprehend how a urine sample could be so finite. I questioned a couple of doctors only to be firmly told ‘your son has Type 1’ - period. The next 12 hours whilst they took over to stabilise him was awful. Google doctor told me everything I ‘didn’t want to’, but needed to know and even though everything says ‘it’s no-bodies fault’ we couldn’t help but blame ourselves. And when our son come around and he started to understand what was going on - he looked at me and asked ‘ is it something I did wrong?

We are now 2 days into what is to become our new ‘norm’. He’s been stabbed more times than I care to count, starved whilst being rehydrated and BG’s brought down, is in hospital until the end of the week at least, and he keeps on smiling. I swear if he wasn’t being such a trooper about it, I don’t know how we would’ve coped.

His BG is still high and has constant corrections whilst they figure his dose, but 24 hours in he’s been doing his own prick tests and yesterday was doing his own insulin. Was hard yesterday when we took him out for some fresh air and went to Tescos and he stood in the deli section reading sugar and carb contents trying to work out what he can have as free snacks. He’s having a freestyle fitted today with a view to moving to a pump in a few weeks.

The NHS staff (James Cook) have been absolutely fantastic. And the ongoing support is already proving to be second to none. Within 20 hours of being diagnosed the diabetes team had contacted his school and arranged for staff training and a dietician visit (small rural school), we had met 3/4 of the team and are meeting more and more as we learn ‘the new us’ before we go it alone.

Each day it gets easier for us mentally, but in the back of my mind I keep thinking ‘why’ and then just feel sick for what he has to go through for the rest of his life.

I get that it will get easier, but right now, this minute, it’s not, and it feels like my head is going to explode and just want to scream.

But as a family we will continue to say - ‘We got this!!’
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My 5 year old granddaughter was diagnosed a month ago and it’s extremely hard waking her up in the night to give her correction or juice but like you we have to deal with it just found this forum x
 
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