Hi, eventually took the plunge and registered !

[Dizzyissy]

my 38 year old son was diagnosed Type 1 diabetes 8 weeks ago. personally think symptoms probably been there over 2 years but wouldn’t go to GP. Men !!
when registering on here there is no tick box for family member of diabetic person, hence hesitation to register but posts I’ve read seem helpful so taken the plunge as I’m at a loss how to offer positive help. Diabetic clinic impressed he’s handling injections etc really well but seems physiologically struggling. aches and stomach pains, cracking joints, no energy, irritable, no motivation. Could this be a common stage “type 1‘s “ go through in early weeks ?

 

[daducky88]

Hello and welcome Dizzy 🙂

I hope you and your son are managing ok.

I cant remember my initial symptoms to be honest asi developed t1d at 11 months old. But i dont have aching joints. If es tired it might be extremes of blood e
Ie too high or low.
I aim.for 6mM as as a target. I weight 83 kilos( should be lighter) do little exercise(bad me), eat ~120g CHO a day.( not too bad) for 56U insulin total.
I'm on a pump and split my day into a number of time brackets against which one can optimise by trial.and error their basal, bolus and correction ratios i.e.
Time. Basal. Bolus. Correction
U/hr. U/g cho. mmol/U
0000h-0830. 0.775. 12. .....3.8
0830- 1130. 1.20. 7. 2.9
1130 - 1730. 1.75. .... 5.7. 2.4
1730- 2030. 1.85 5.7 2.4
2030- 2400. 1.65. 6.3. .3.1

I guess that be an awful lot to take in at the min. But any questions, please fire away.
If your son is on multiple daily injections(MDI), these may be split into

1 or 2 basal (long acting insulin) injections per day plus
Bolus injections before meals according to how many carbs one thinks they will eat per meal. I try to limit myself to 40g carb per main meal. Eg 40g carb = 60g dry pasta, 2 slices white bread eg a sandwich a lunch, a 200g (medium) potato and disappointingly 1/3rd of a big pizza :'''-(. Also a pint of beer (any sort) and cider cobtain 15g carnbs so a night out on the town of 4 pints = 1.5 dinners worth of carb. No wonder blokes develoo a beer belly :-o

Also hospitals offer or practically drag you into ;-) a course called dose adjustment for normal eating "DAPHNE" which is worth doing if you're ie your son is a new diabetic.

Also there are local diabetic groups who in normal times meet up and get high on illicit cake or maybe in fact an apple or two, but share experiences and have a brew.

Kind regards to you and your son

SuperDucky

 

[Bruce Stephens]

when registering on here there is no tick box for family member of diabetic person

A number of members seem to have "Parent", so I'm sure an administrator will be able to change it for you, though it doesn't matter that much.

but seems physiologically struggling. aches and stomach pains, cracking joints, no energy, irritable, no motivation. Could this be a common stage “type 1‘s “ go through in early weeks ?

Some of those may be at least partly psychological, but regardless they're all things that are worth him mentioning: it's understood that handling diabetes is onerous and often stressful, and the clinic will want to offer help. Similarly, rapid changes (as will happen after first diagnosis) in blood glucose can produce a variety of weird symptoms; some will just dissipate but some may last longer.

a course called dose adjustment for normal eating "DAPHNE"

It's DAFNE, of course (it's an acronym).

 

[SB2015]

Welcome to the forum @Dizzyissy
Sorry to hear about you ur son’s diagnosis. It is a shock at any age (I was 53) and takes a bit of getting used to. The best analogy I have heard is that it is like learning to drive. It seems so complicated at the start and then quite soon becomes automatic, and just watching for the obstacles and deviations in route.

I would encourage your son to join other forum. I have learnt most of what I know about my management from others in here who are always happy to help in any way that they can. No questions are considered silly.

I found (and still dip into) the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas very useful. Ignore the age reference. T1 is T1, just ignore the bit about going back to school.

The DAFNE course for me was not only helpful in teaching me how to adjust my own doses of insulin, but it was also so good to meet others living with T1. We are a rare breed and it can be very isolating.

For you too. Keep in touch on here and just ask any questions that you have.

 

[daducky88]

A number of members seem to have "Parent", so I'm sure an administrator will be able to change it for you, though it doesn't matter that much.


Some of those may be at least partly psychological, but regardless they're all things that are worth him mentioning: it's understood that handling diabetes is onerous and often stressful, and the clinic will want to offer help. Similarly, rapid changes (as will happen after first diagnosis) in blood glucose can produce a variety of weird symptoms; some will just dissipate but some may last longer.


It's DAFNE, of course (it's an acronym).

Oh yes , i was having scooby doo memories

 

[daducky88]

my 38 year old son was diagnosed Type 1 diabetes 8 weeks ago. personally think symptoms probably been there over 2 years but wouldn’t go to GP. Men !!
when registering on here there is no tick box for family member of diabetic person, hence hesitation to register but posts I’ve read seem helpful so taken the plunge as I’m at a loss how to offer positive help. Diabetic clinic impressed he’s handling injections etc really well but seems physiologically struggling. aches and stomach pains, cracking joints, no energy, irritable, no motivation. Could this be a common stage “type 1‘s “ go through in early weeks ?

This could be handy to:

Diabetes UK are running this online virtual event on 15th December for anyone interested in diabetes tech.

Webinar registration October - parents/carers

@Odette DUK has more information if anyone has questions

 

[Ralph-YK]

There are a number of parents on the forum.
You can set Parent as your "relationship to diabetes".
Select your profile picture near the top of the page. Then Account details.

Part way down the page you get, there is a list labeled Relationship to diabetes.You can choose parent in the second column.

 

[trophywench]

Frankly if he's been T1 for 2 years without needing an ambulance he's a miracle still being alive. he'd have been in a cma long since - hence I shouldn't think he has been.

It's really really hard to get your head round and every single person struggles with the diagnosis in some ways whoever they happen to be! I've had it very nearly 50 years and still learn stuff - he has the rest of his life so don't get thinking anything's going to suddenly become OK. Slow but sure will get him there.

 

[Dizzyissy]

Thanks for replies. I’m hoping this is a period many type 1’s go through while getting head round carb counting to get insulin doses exactly correct. being a bit hard on himself about perfect glucose levels at moment ! maybe advice as how to encourage/motivate ’normality’ ie confidence of living with T1 rather than T1 taking over living. first step might be to get him interested in this forum, I’m working on that one !!

 

[trophywench]

Even when you get them correct to begin with, they don't stay correct for ever so long at a time, so you just have to get used to having to 'fine tune' them for ever. There are approx 42 different things that can affect BG levels, some of which we have control of like the food we eat and many of which we don't eg ambient temperature, sickening for something or another, stress from whatever causes us stress, this that and the other!

He'll get there - cos he has to - it takes time.

 

[grovesy]

Hello and welcome Dizzy 🙂

I hope you and your son are managing ok.

I cant remember my initial symptoms to be honest asi developed t1d at 11 months old. But i dont have aching joints. If es tired it might be extremes of blood e
Ie too high or low.
I aim.for 6mM as as a target. I weight 83 kilos( should be lighter) do little exercise(bad me), eat ~120g CHO a day.( not too bad) for 56U insulin total.
I'm on a pump and split my day into a number of time brackets against which one can optimise by trial.and error their basal, bolus and correction ratios i.e.
Time. Basal. Bolus. Correction
U/hr. U/g cho. mmol/U
0000h-0830. 0.775. 12. .....3.8
0830- 1130. 1.20. 7. 2.9
1130 - 1730. 1.75. .... 5.7. 2.4
1730- 2030. 1.85 5.7 2.4
2030- 2400. 1.65. 6.3. .3.1

I guess that be an awful lot to take in at the min. But any questions, please fire away.
If your son is on multiple daily injections(MDI), these may be split into

1 or 2 basal (long acting insulin) injections per day plus
Bolus injections before meals according to how many carbs one thinks they will eat per meal. I try to limit myself to 40g carb per main meal. Eg 40g carb = 60g dry pasta, 2 slices white bread eg a sandwich a lunch, a 200g (medium) potato and disappointingly 1/3rd of a big pizza :'''-(. Also a pint of beer (any sort) and cider cobtain 15g carnbs so a night out on the town of 4 pints = 1.5 dinners worth of carb. No wonder blokes develoo a beer belly :-o

Also hospitals offer or practically drag you into ;-) a course called dose adjustment for normal eating "DAPHNE" which is worth doing if you're ie your son is a new diabetic.

Also there are local diabetic groups who in normal times meet up and get high on illicit cake or maybe in fact an apple or two, but share experiences and have a brew.

Kind regards to you and your son

SuperDucky

Some areas have their own names for the carb counting courses.

 

[helli]

Frankly if he's been T1 for 2 years without needing an ambulance he's a miracle still being alive. he'd have been in a cma long since - hence I shouldn't think he has been.

Type 1 symptoms develop much much slower at a later stage in life.
Two years may be extreme but I would not dismiss it so readily ... not that it matters. What matters now is he has the diagnoses and is moving forward.

My symptoms which I ignored (even though I am not male) started in September and I was diagnosed in January without a coma, DKA or even an overnight stay in hospital.

 

[Dizzyissy]

Welcome to the forum @Dizzyissy
Sorry to hear about you ur son’s diagnosis. It is a shock at any age (I was 53) and takes a bit of getting used to. The best analogy I have heard is that it is like learning to drive. It seems so complicated at the start and then quite soon becomes automatic, and just watching for the obstacles and deviations in route.

I would encourage your son to join other forum. I have learnt most of what I know about my management from others in here who are always happy to help in any way that they can. No questions are considered silly.

I found (and still dip into) the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas very useful. Ignore the age reference. T1 is T1, just ignore the bit about going back to school.

The DAFNE course for me was not only helpful in teaching me how to adjust my own doses of insulin, but it was also so good to meet others living with T1. We are a rare breed and it can be very isolating.

For you too. Keep in touch on here and just ask any questions that you have.

thank you

 

[Dizzyissy]

Welcome to the forum @Dizzyissy
Sorry to hear about you ur son’s diagnosis. It is a shock at any age (I was 53) and takes a bit of getting used to. The best analogy I have heard is that it is like learning to drive. It seems so complicated at the start and then quite soon becomes automatic, and just watching for the obstacles and deviations in route.

I would encourage your son to join other forum. I have learnt most of what I know about my management from others in here who are always happy to help in any way that they can. No questions are considered silly.

I found (and still dip into) the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas very useful. Ignore the age reference. T1 is T1, just ignore the bit about going back to school.

The DAFNE course for me was not only helpful in teaching me how to adjust my own doses of insulin, but it was also so good to meet others living with T1. We are a rare breed and it can be very isolating.

For you too. Keep in touch on here and just ask any questions that you have.

Thanks for comments and reassurance

 

[Dizzyissy]

Type 1 symptoms develop much much slower at a later stage in life.
Two years may be extreme but I would not dismiss it so readily ... not that it matters. What matters now is he has the diagnoses and is moving forward.

My symptoms which I ignored (even though I am not male) started in September and I was diagnosed in January without a coma, DKA or even an overnight stay in hospital.

reassurance appreciated. Son was living/working abroad. 2 year comment based on physical appearance, eating, liquid intake, weight loss etc i became aware of during only a couple of visits.
hospital consultant explained his age not typical for this type diabetes, more normal in either very young or much older people. never heard of keytones, blood glucose levels and such so had to hit the ground running, scary. . As you say, diagnosed now so moving forward the way to go.

 

[Bruce Stephens]

hospital consultant explained his age not typical for this type diabetes, more normal in either very young or much older people.

I don't think that quite matches the data. As far as I remember it just becomes less likely with age. But it is more common in young people which does cause confusion.

 

[helli]

I don't think that quite matches the data. As far as I remember it just becomes less likely with age. But it is more common in young people which does cause confusion.

Although the highest number of people were diagnosed in the age range 10 to 19, more than half of the people with Type 1 were diagnosed after their 20th birthday.

Diabetes developments – by Simon O’Neill

Tweet In a regular blog series, Simon O’Neill, Diabetes UK’s Director of Health Intelligence and Professional Liaison, rounds up the latest diabetes research. This week…

blogs.diabetes.org.uk

 

[Dizzyissy]

Hello and welcome Dizzy 🙂

I hope you and your son are managing ok.

I cant remember my initial symptoms to be honest asi developed t1d at 11 months old. But i dont have aching joints. If es tired it might be extremes of blood e
Ie too high or low.
I aim.for 6mM as as a target. I weight 83 kilos( should be lighter) do little exercise(bad me), eat ~120g CHO a day.( not too bad) for 56U insulin total.
I'm on a pump and split my day into a number of time brackets against which one can optimise by trial.and error their basal, bolus and correction ratios i.e.
Time. Basal. Bolus. Correction
U/hr. U/g cho. mmol/U
0000h-0830. 0.775. 12. .....3.8
0830- 1130. 1.20. 7. 2.9
1130 - 1730. 1.75. .... 5.7. 2.4
1730- 2030. 1.85 5.7 2.4
2030- 2400. 1.65. 6.3. .3.1

I guess that be an awful lot to take in at the min. But any questions, please fire away.
If your son is on multiple daily injections(MDI), these may be split into

1 or 2 basal (long acting insulin) injections per day plus
Bolus injections before meals according to how many carbs one thinks they will eat per meal. I try to limit myself to 40g carb per main meal. Eg 40g carb = 60g dry pasta, 2 slices white bread eg a sandwich a lunch, a 200g (medium) potato and disappointingly 1/3rd of a big pizza :'''-(. Also a pint of beer (any sort) and cider cobtain 15g carnbs so a night out on the town of 4 pints = 1.5 dinners worth of carb. No wonder blokes develoo a beer belly :-o

Also hospitals offer or practically drag you into ;-) a course called dose adjustment for normal eating "DAPHNE" which is worth doing if you're ie your son is a new diabetic.

Also there are local diabetic groups who in normal times meet up and get high on illicit cake or maybe in fact an apple or two, but share experiences and have a brew.

Kind regards to you and your son

SuperDucky

Thanks for info especially rough idea of daily carbs to maybe work around as never had need to control food intake myself or in family so a lot to learn and quickly.
Luckily I guess, i eat whatever foods I want, no fixed meal times, just eat if/when hungry (Not a good regime I suppose but done this most of life without need of weight control diets or such)

 

[trophywench]

I didn't know that onset is slower at a later age - though having said that, it was a few weeks for me at the tender age of 22.

Well that is the thing which is so alien about diabetes, probably - the fact that we have to specifically 'think' about eating anything, every single time, rather than just fancying whatever and grabbing it. It is simply not natural!!

 

[helli]

Well that is the thing which is so alien about diabetes, probably - the fact that we have to specifically 'think' about eating anything, every single time, rather than just fancying whatever and grabbing it. It is simply not natural!!

It was alien when I was first diagnosed but that "thinking" about food has become second nature. I have calculated carbs for most meals I eat so do not have to carb count in detail every time I eat.
Thankfully, I can now grab and eat what I want when I want. Use of the faster insulins (like FIASP) has helped significantly with that.
I definitely disliked being on mixed insulin for the first 6 months when I had to eat a certain amount of carbs at given times. But once I moved to Basal/Bolus things became more "normal".