Viewing 40 posts - 1 through 40 (of 86 total)
  • Sons just been diagnosed with type 1 diabetes.
  • Gary_M
    Free Member

    Our 17 year old son has been feeling a bit rubbish for the past few weeks and has been getting steadily worse over the last few days. Rapid weight loss, headaches, peeing all the time, no concentration. Friend of ours is a doctors so checked him out tonight and it’s type 1 diabetes. Had to go to hospitals tonight to get insulin as he has some ketones in his urine.

    I’m trying to tell myself and him that it’s perfecly managable but worried about him and how this will impact his life.

    I have asthma and it doesn’t stop me doing anything, I do hope diabetes can be managed in the same way.

    So 17 year old with a summer of festival going and holiday in Greece with a big group of friends, how will this affect him?

    Nobeerinthefridge
    Free Member

    Chin up mate, nothing else to offer but best wishes and best of luck.

    Gary_M
    Free Member

    Thanks, he’s shattered, I need a beer, can’t bloody well have one in case I need to take him to the hospital in the night.

    Speshpaul
    Full Member

    That’s crap news and if it was one of mine I’d be gutted.
    I feel for you.

    However, talking to time. It’s not the end of the world, lots of other much worse shit can happen.
    Now go and have a beer with your boy and make some plans to do something stupid.

    Gary_M
    Free Member

    Yeh we did expect worse news to be honest as he’s lost a lot of weight, and didn’t have much to lose. Still struggling to take it in. He’s in bed now, totally exhausted. Wife away this weekend too, as her dads in hospital in Yorkshire.

    grahamt1980
    Full Member

    It is controllable now, and yeah ok there is always a potential risk from having a disease like that, but there is no reason why with the proper level of control he shouldn’t be able to function pretty normally.

    piedidiformaggio
    Free Member

    It’s a learning curve and you have to think about food a bit differently, but it’s easily manageable.

    I won’t pretend that it’s going to be a bed of roses, there will be bumps along the way, but once he’s in the care of his local diabetes care team, he’ll be fine.

    Lots of useful info here http://diabetes.org.uk

    I speak from experience, T1 here. Diabetes doesn’t stop me doing anything. If managed properly, it won’t stop your son doing anything either.

    Northwind
    Full Member

    Honestly as chronic conditions go, it’s alright. It’s a daily hassle and a steep learning curve but once you’re there it mostly just ticks along… I was diagnosed when I was wee and it’s all I know and really, it made very little difference as a teen, makes very little difference to my riding either. Like, 6 hours endurance downhill racing? No bother. All my skin fell off but the diabetes made no odds.

    It can seem like a total hassle, but, it’s actually much easier to have good control than bad, even in the short term. It can feel like a big impact on your life to do blood tests, injections but that’s a lot less hassle than regular hypos.

    Important- get some friends onside and educated- he’ll want to have a couple of good friends that’ll know when he’s hypo and can jump in. That’s the single biggest issue I ever had- you know when someone’s drunk, and because they’re drunk, is totally convinced they’re sober enough to drive, and there’s nothing wrong with them? Same thing can happen with a hypo, your brain doesn’t work right and you can just fail to understand what’s happening. Whereas your mates will see it and can fix it.

    If he’s got any luck, there’ll be an honest diabetic nurse who he can actually talk to about stuff. Mine was class, no concern for morality or legality whatsoever 😆 “Remember, smoking’s really bad for diabetics, so you shouldn’t smoke weed, mmmkay?” So I went, sure, ok. “Crumble it into a yoghurt, you get a way better, longer high anyway, and only buy the good stuff- it’s more expensive but better value, when you buy shit you’re mostly getting high on the plastic fumes”

    Good luck! I’m not the best diabetic in the world so I’m really wary of giving actual advice but if you want to, use my email…

    Gary_M
    Free Member

    Thanks for the info folks. Meeting with the consultant is at 8:30am tomorrow so I guess we’ll just take it from there.

    chipster
    Full Member

    All of what’s been said above, but especially this bit.

    Important- get some friends onside and educated- he’ll want to have a couple of good friends that’ll know when he’s hypo and can jump in.

    I was diagnosed type 1 in 1990, at the tender age of 30. I’m still learning.
    If he’s offered a DAFNE course, take it.

    Trekster
    Full Member

    My mate; http://diabetesuat.mba-apps.co.uk/In_Your_Area/Scotland/Fundraising/Challenges/
    http://www.dng24.co.uk/sport/superfit-ralphs-king-of-the-gym-at-74/4573
    http://www.dng24.co.uk/sport/rachael-on-trail-of-cycle-racing-success/4873 That’s a diabetes T Rachael is wearing, she is also type1. As well as biking she is a regular runner on and off road.
    MrsT is type2 as are a number of work mates.

    Harry_the_Spider
    Full Member

    My daughter has been Type 1 since she was a baby. Once the management is sorted it doesn’t stop you doing anything.

    Get your head round it. Get your systems in place. Get a couple of good mates aware and get on with it.

    As Steve Redrave said : “It isn’t how I deal with Diabetes, it’s how Diabetes deals with me”… and he’s doing alright.

    beej
    Full Member

    This may not be relevant, but if he’s any interest in exercise/cycling, he could look at the work of Team Type 1/Novo Nordisk.

    http://www.teamnovonordisk.com/

    I know (sort of) one of their development riders through Google+ (yes, people use it!). Based on his posts, he gets on pretty well.

    http://www.teamnovonordisk.com/teams/development/chris-mcgovern

    DickBarton
    Full Member

    The ‘good’ news is that it is ‘only’ diabetes. It is much better understood these days and providing the person has a sensible side to them, the biggest issue will be adapting to the new routine.
    It isn’t a massive shift for some people and for others it is.
    I suspect he (and you) will be very worried and scared just now as it will be a lot to take on-board. Try to relax a bit, the medication will help massively and he will start to feel better shortly.
    Diabetes won’t stop him doing what he wants, but he will need to be a wee bit more careful and think ahead a bit.
    I was 17 months old when I joined the club – I know nothing about the adjustment but now it is my ‘normal’ – I’m no saint with it but it doesn’t slow or stop me.
    Like most other diabetics, happy to chat if needed, also, if it helps, I’m sure my parents would be happy to talk to you if you wanted.
    He will be fine, but it does need a change to prep for whatever lifestyle he has…but it will fit.
    Your diabetes unit should be able to put you in touch with support and advice and be on-line for guidance, they are generally useful starting points for information.
    As someone has said…a DAFNE course is very good (or whatever the acronym is) – gives a great understanding of carbs and working with them.
    It isn’t really ‘good’ news but at least it is now known and can now be managed (that is the bit that takes the time to learn.

    Gary_M
    Free Member

    Just got back from seeing the consultant, another trip to the hospital this evening then the same tomorrow, this is to get him stabilised and as the consultant said its better than spending the weekend in a hospital bed.

    Then we’ll be seeing the care team on Monday.

    He’s feeling a lot better this morning and didn’t need to get up for a pee in the night, the first time in a few weeks. He’s coming to terms with it pretty quickly, the consultants really nice and downs to earth which helps.

    Thanks for your advice and support.

    iainc
    Full Member

    Glad to hear the update. He’s young enough to take this in his stride, its us old guys that tend to get more floored by big health diagnosis’

    Speshpaul
    Full Member

    Good stuff

    samunkim
    Free Member

    Good new is that a cure can only 10-15 years away, (as the drug companies can’t shut stem-cell research down) long before it does your kid any permanent harm.

    I know this sounds silly, but teach him PI to 12 figures, ask him to repeat it back to himself before attempting a big double later in life (or if he is acting out). Losing numbers off the end = useful early warning.

    Also always carry a complex sugar source like flapjacks or apple, as the short ones can provoke a “bounce” once they’ve done their job.

    DickBarton
    Full Member

    That is good news.

    10 years off? Hahaha…been getting told that since I was diagnosed.

    A cure would be ideal, but better to manage it whilst it is here. I’m sure a cure will be found, just not convinced it’ll be that soon.

    whytetrash
    Full Member

    its ok really fella…im 5 yrs into it now and manage it pretty well! DAFNE is pretty good but none of the medical proffessionals ive met in North Wales seem that clued up so do your own research too. he will have good days and bad days(when there seems no logic to sugar levels)once he sorts the ratios of insulin to carbs its easy…buy a good digital scales to weigh what he eats and get him calculating carb contents of food now…becomes second nature! if you want to ask more get in touch! ps buy some jelly babies and make sure he always carries 6 of them….ignore the earlier advice re long acting carbs when you need sugar as a diabetic you NEED SUGAR NOW!

    Harry_the_Spider
    Full Member

    What he says^. We have our menus broken down and listed to make the dosing easy.

    We use these for getting out of a hypo.

    7.9g of fast acting carbs. Individually wrapped. Easy to carry about. 20p each.

    And these when she is out of a hypo.

    whytetrash
    Full Member

    jelly babies are mostly glucose syrup we talk about blood sugars but its actually blood glucose we monitor so the fastest acting sugar type is glucose. 5 mins after eating them then get some longer acting carbs in cereal bars etc all work well.

    Harry_the_Spider
    Full Member

    Same deal with the Fruit Stix.

    Northwind
    Full Member

    I used to always use dextrosol tablets but jelly babies do the job just as well ime and are more palatable. Energy gels are convenient and effective. (the hospital or clinic might give you nhs gels- they’re manky, I use sports ones)

    piedidiformaggio
    Free Member

    I carry around Glucotabs for hypos (although since being on a pump, a much rarer event for me now). You can get them in big tubs and ickle tubes. Very handy for staying at work, in Camelbacks, in the car, around the house, etc.

    There is a load of rubbish spouted off about diabetes, treatment and what should/shouldn’t be done. Listen to the specialists. Your GP may well be somewhat ignorant (one told me once that I ‘should not eat any carbohydrates’ 😯 ).

    No doubt loads of people will offer their pearls of wisdom, ‘cos they know someone who found a cat that once belonged to someone who had a mate who had a cousin who had ‘bad’ diabetes and their feet fell off.

    To my mind the comment above: “I know this sounds silly, but teach him PI to 12 figures, ask him to repeat it back to himself before attempting a big double later in life (or if he is acting out). Losing numbers off the end = useful early warning.” is something I wouldn’t agree with – if I’m having a hypo it’s quite likely I’d tell whoever was asking to **** off! In anywise, a quick BG test will confirm current levels much better than a memory test! Hypos are quite personal things, we are all different. Your son will learn what they feel like, how he feels when he’s having one and you’ll learn to spot the signs.

    Listen to the specialist for advice on treating hypos, but generally speaking, you need fast acting carbs to bring you back up quickly. Further corrective actions depend on the treatment you are receiving (mines different now I’m on a pump)

    Anyway, your son will adapt and it’s not as bad as it seems at first and believe it or not, there are some ‘perks’. Free prescriptions (assuming you’re not in the badlands north of the border), a good GP will treat any other illnesses more seriously (mine once said, ‘well as you are T1, we won’t muck about, I’ll prescribe the strongest antibiotics I can’). If he needs any operations then you get moved to the top of the list on the day, so you always get done first – surgeons generally don’t want a diabetic hanging around!

    You / your son will also look at food nutritional information where you never looked before. You’ll also get wound up by it (I do) when it’s badly done. Typically at such daftness such as a label saying there’s xx of carbohydrates per 100g of whatever it is, but then not telling you how much the thing weighs.

    There will be bad days, but hopefully they’ll reduce and the rest of the time just becomes ‘normal’

    I can honestly say, that for me, the worst thing about being T1 is having to carry around the associated paraphanalia all the time, but you get used to it.

    Anyway, best of luck.

    speckledbob
    Free Member

    I was diagnosed last week as type 1. A few days in hospital and then back to a world thats changed a lot. The good news is i feel like I’m starting to get the hang of it now and my blood is starting to settle down a bit. Good luck to the op. If I’m honest the first few days were fairly terrifying. But I’m reassured by people and this thread that things will become much easier.

    piedidiformaggio
    Free Member

    Welcome to the club speckled bob!

    The very fact there’s a fair few of us on here shows that T1 shouldn’t stop you getting out there and just doing whatever it is you want to do

    whytetrash
    Full Member

    one point as a new diabetic you get a honeymoon period where you can get some insulin production for a while so be prepared for ratios to change etc

    spotting hypos is generally straightforwards… pale face, profuse sweating, dazed or confused through to proper mardiness! if in doubt eat first check later!

    alibongo001
    Full Member

    Hypos are easy to spot…………….by others!

    One of the first symptoms is confusion (for the sufferer)

    Midnighthour
    Free Member

    Our cat had diabetes and had to be injected twice a day. Its quite quite common now in cats and dogs. On the bright side, if we can manage a cat (who cannot talk or give info on symptoms) successfully then its looking good with a human. Our cat died some years after diagnosis but of health issues unrelated to diabetes. He used to go out doors and do all the normal cat things with our other cats. Putting things in a protective cocoon does not give them a good life.

    I investigated some things about humans at the time, to understand the cat situation more – and came across a very encouraging account from a lady in her 30’s who had been diagnosed as a child. She said it had not stopped her doing anything at she wanted and at the time of writing she had already given birth to a couple of children and felt the illness had not impacted her life in any high profile way.

    I also came across an article from someones mother who did nothing but bemoan how unhappy she was that her child had been ill with it for over 10 years. She seemed totally to miss the point that 80 years or so ago her child would have been dead at least 9 years before she started writing her complaints. She had all those extra years that so many in the past never got the chance to have, as did her child. She did not know how lucky they both were.

    I also had a work colleague in her 40’s who was diagnosed with diabetes at a very late stage – so ill you could see the outline of her teeth through her face due to weight loss – only diagnosed a few days from fatal coma (so the hospital told her, clearly not very proactive local GP). To everyones shock she transitioned to the injections almost seamlessly, lived another 20 years and died of a lung related disease she had from childhood, so again unrelated to diabetes in any way.

    It will be ok. You will got through a stage of anxiety while learning to monitor the situation and learning to feel confident in the readings (much easer to monitor now than it used to be) and then you will realise not much in life has actually changed and you are all hugely lucky its so relatively easy to monitor and treat these days.

    We all live with minor risks every day – just driving some place is a risk. But we get so exposed to it we stop worrying and it will be the same for you and your family, just give it time to settle.

    ratadog
    Full Member

    Good advice here from a lot of people with Type 1. As a diabetes specialist I would particularly endorse developing a good working relationship with the diabetes specialist nurses, testing regularly and, once the honeymoon period is over in about 6-9 months, look to get on a DAFNE course if at all possible. DAFNE should be available pretty much everywhere now.

    Good control means less problems in the future and minimal interference in current lifestyle.

    scud
    Free Member

    Hi
    My daughter Freya was diagnosed last October at four years old. It is difficult sometimes, and at first it is hard giving injections and the finger pricks but you get it into your head that you have to do it to keep her healthy.
    Few things from my own experience:
    – make sure you have good diabetes team at hospital and don’t be afraid to ask advice from them or other parents. However, daft you think question is
    – Don’t touch anything labelled as food for diabetics.
    – Get some of the Salter food scales where by entering in a food code, and when it weighs the food it will tell you the exact amount of carbs, makes cooking so much easier.
    – learn as much as you can, how insulin is a hormone and how is age and no doubt growing will affect the disease.
    – Read up on it, but personally try and get him an insulin pump instead of injections asap, it allows so much more control over carb intake, snacking and no doubt the odd alchoholic drink.

    Any questions happy to help pauljwhitlock@gmail.com

    Just remember it is a real shock now, but it gets easier and it is a manageable disease, it does not to have to stop him doing anything at all.

    Paul

    grilla
    Free Member

    I’ve been Type 1 since aged 6, still all good 35 years later. Sure it’s something I have to think about, but it’s never stopped me going anywhere or doing anything. Best wishes to your Son.

    samunkim
    Free Member

    Woah tough crowd

    Not commenting cause I know someone who found a cat that once belonged to someone who had a mate who had a cousin who had ‘bad’ diabetes and their feet fell off.

    But cause I’ve had diabetes 30 years & trying to be a bit pragmatic.

    re. the PI thing. I am talking a real life self check before you’re about to do something silly. (telling whoever to **** off! is actually also a good indicator your having problems too :-))
    As is trying to cycle through a muddy river when its only -2c

    If I stopped to do my bloods before every descent I would never get any thing done.

    Maybe I expressed myself badly about the sugar (since I thought the dextrosol tablets thing was obvious) I meant post hypo of course.. Something that can get you back down the mountain under your own steam !! but is easy to digest since I often feel a bit queasy after a mild-hypo

    samunkim
    Free Member

    re: it does not to have to stop him doing anything at all.

    Aw common let be honest.

    Competitive Motorsport
    Scuba Diving
    Flying

    are a few off the top of my head !!

    konagirl
    Free Member

    I think that list is a bit unfair, samunkin. It is true that perhaps 10-20 years ago there was a list of recreational activities and careers where is was easier to exclude diabetics than take the risk, so diabetics were prohibited. But with improvements in treatment, so long as the diabetes is well controlled and you don’t have associated problems you can now fly a plane recreationally or commercially, you can scuba dive with many organisations, compete in track days, ride a motorbike in the TT etc. I do accept there are more onerous medical screening and insurance procedures to deal with and even simply travelling is more onerous.

    Good luck to your son, OP. Hope he has a fun summer. Like others have said, get his friends up to speed and get as much information from his support team, particularly having an honest conversation about drinking / going out.

    votchy
    Free Member

    All of the advice so far has been brilliant. Both myself and my 17yo son have type 1 diabetes and we are both on insulin pumps. The one biggest issue my son has is he is 17 and they are wired up really weird at that age, his control is not as good as it could be as there is always something else distracting him, it is the most annoying thing I have ever come across, he knows what he has to do but forgets as often as he remembers to blood test and/or bolus.
    It can be managed and as people have said, apart from driving HGV’s and a few other things, it doesn’t need to stop you doing anything, you just have to give those things a bit more thought, all the guys above ride bikes and we all manage, there have been professional athletes (Steve Redgrave, Gary Mabbutt etc) who have competed at the very highest levels. There is an abundance of information out there to help and as said previously, with a good DSN (Diabetes Specialist Nurse – more valuable in my experience than the consultant) you can take control of your life and experience all the good things it has to offer.
    The advice about getting friends educated is invaluable, my 2 best friends are as up to speed with diabetes as I am so there have never been any issues at festivals, 2 week long ‘lads’ holidays, proper weekend benders etc.
    In my experience, it just takes a bit more thought.
    If you have any specific questions feel free to email me (in profile) and I will answer as best I can.
    Good luck and stay positive.

    Northwind
    Full Member

    samunkim – Member

    Aw common let be honest.

    Competitive Motorsport
    Scuba Diving
    Flying

    are a few off the top of my head !!

    Ask Paul O’Neill about competitive motorsport… Not a problem. There’s extra hoops to jump through to obtain a licence is all.

    Scuba- the British Sub Aqua Vlub lifted its (totally non-evidence-based) ban in 1992. Again, there’s other sensible medical criteria- you wouldn’t want an unhealthy diabetic with poor control diving or racing.

    Flying- the CAA lifted restrictions on T1s in 2012.

    Scaremongering isn’t helpful. There are a couple of things you can’t do- IIRC get a HGV or PCV licence, drive an emergency services vehicle or a train… And there’s a number of professions that are allowed to exclude you as a diabetic- armed forces, emergency services, offshore, maybe some others though that doesn’t automatically mean you will be excluded.

    robw1
    Free Member

    Theres a lot of diabetics on here! I developed type 1 aged 28 and have got through the last 8 years fine. I have to admit it was a lot to get my head around initially (mainly in the fact that I didn’t want to have a chronic condition for the rest of my years!) so your son may also experience the ‘why do I have to deal with this?!!’ too.

    I would echo what a few people have said about developing a good relationship with the diabetic specialist nurses. They will give him a massive amount of practical advice…particularly about controlling blood glucose, and hypos. I found that GPs were next to useless in knowing about how to deal with the day to day living with diabetes. Essentially it is a condition that the individual living with it learns how to manage themselves…and eventually he will become a bit of an expert in his management of it….with guidance learnt from a good care team.

    It hasn’t stopped me from doing much….still bike, ski, surf, have done long distance open water swims, got through a medical for an Australian work visa without comment. Some of the sport stuff (particularly anything involving water) I make sure that I am careful to monitor my blood glucose carefully as a hypo might be more likely and a problem if swimming about in the sea!

    Someone else mentioned earlier about ensuring that your son and his mates are aware of the signs of a hypo. It can be a bit like being drunk…and appear like that to other people too. my hypos have changed over the years from being really full on (sweating, shaking etc) to now more subtle (blurred vision, bit confused!) but as long as theres some sugar handy (sweets, drink, biscuits..)….and maybe someone telling me to eat it (if I don’t clock on I am having a hypo!)…its back to normal quickly.

    On the bright side, he is now pretty much an adult…most of the long term bad effects as a result of poor diabetes control occur in younger teenagers who are unwilling to come to terms with the fact that they have to deal with the condition themselves.

    stealthcat
    Full Member

    The only thing I’d add as someone who doesn’t have diabetes, but worked with someone who did – it’s a good idea to make sure that at least one of your colleagues knows about it.

    One of the guys with diabetes wouldn’t tell anyone about it (including the first aiders), and when your colleague has a hypo but you don’t know what it is, it’s quite worrying. Luckily for him, the nearest ambulance station was about 21 floors away, so once the paramedics were called in, he was treated quickly, but keeping it that secret didn’t seem like the greatest idea to those of us around at the time…

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