# In A Bit Of A Shock



## KarinBee (Oct 14, 2012)

Well, I never thought I'd be joining a forum such as this.  I am still in a bit of a daze.

My son, 19, started feeling very tired last week, very thirsty and on Thursday he was sick.  Friday morning he went to see his GP and by Friday afternoon he was in hospital with DKA and then confirmed with Diabetes Type 1.

He is still in hospital as I type.  He may be 19 but he is still my baby.  Don't get me wrong, I don't mollycoddle or pamper!  He is currently on a medical ward where we left him last night with three very old men, one gasping for breath and one who had taken all his clothes off - bit of a shock to the system for my son I think.

Apart from his injections as a baby, he has had no medical interventions whatsoever and I am so proud of him as he sits in his hospital bed with numerous drips attached to him and being tested for blood sugar every hour.  But I really wish I could swap so that it was me sitting in that hospital bed instead of him.

As a family, we have decided that we are all going to be part of his condition and, I think it will help us all to start eating better and more healthily.

Yesterday night I was putting some boxes of sweets and biscuits away that I had recently bought for Christmas and it made me feel really guilty.  

I hope I can get lots of help, advice, encouragement and support from this site.


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## Pumper_Sue (Oct 14, 2012)

Hi Karin,
           welcome to the forum and so sorry to hear about your son and the shock it has caused you.
Things do get better take one day at a time anything you don't understand ask.
Christmas goodies etc, there is no reason not to eat them just use moderation. The invention of carb counting and insulin makes having type 1 diabetes a lot easier.
Hopefully his new team of medics will teach carb counting and show your son how to adjust his insulin. This means no food is out of bounds.
All that goes in his mouth has to be matched by the correct dose of insulin.
Best wishes 
Sue


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## Robster65 (Oct 14, 2012)

Hi KarinBee. Welcome 

Agree completely with Pumper Sue. Don't deprive him of all the sweets )or yourselves), just be aware of what carbs are in them and how they might affect his blood sugar. Might be worth asking to see a dietician asap and read some of the threads on here.

Glad you're not molly coddling. He may look like a wounded soldier but we're all testament to the ability to adapt pretty quickly and get by fine, as long as he accepts it for what it is and tests and injects sensibly.

Some people find their tonsils don't work so well and they get wipped out. Never a 2nd thought.
For us, it happens to be our pancreas, which is a bit more of an issue, but luckily for us, we just have to inject a few times a day, keep an eye on our blood sugar and try not to eat too unhealthily (although we all do now and then!). Other than that. He's the same as he was. 

And he'll never have to pay for a prescription. Bonus!! 

I hope he can join the forum too and learn how to have bad habits and get away with it.

Rob


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## trophywench (Oct 14, 2012)

Hear Hear!

I was diagnosed at age 22, married a year ... tried to ring hubby, he was in the car on the way home from work, so I rang my mummy!

Treatment has moved on a lot since then; mainly to our benefit but some of the old wisdom has been lost along the way which is a shame really in certain cases.  However, the main thing to realise is, it isn't just sugar itself that causes the increases in blood glucose, it's anything which turns to glucose inside the body - so that's all carbohydrates.  Sugars, starches (flour, corn flour, rice, oats ...) fructose (yes! - 'healthy' fruit!) some vegetable, legumes (peas, beans ...)  Aaaaargghh.

But being diabetic is the same as being you, but with added mental arithmetic!

I highly recommend a book - 'Diabetes in children, adolescents and young adults' by Ragnar Hanas.  There was an updated version published in March 2012, so make sure you get the most up to date version of it.  (and I think but not certain there's a UK version and a US one, make certain if ordering online, it is the right one else you'll be confused as they use different measurements in the US)  (you can convert back to 'ours' but much easier esp at first if it's done for you) 

Or 'Using Insulin' by John Walsh, or 'Think Like a Pancreas' by Gary Scheiner.  Both American, but they usually give both measurements.

You definitely don't need all of them!

Good luck to him and I endorse what Robster says!  Many of us survive this relatively unscathed as far as we or anyone else could notice and although I spose I have to concede it's kinda 'life changing' - it will only affect you detrimentally, if YOU let it!  It does need effort which can be tedious at times and it's useful to have this forum (or another like it, there are others which aren't very good) to bounce ideas and queries off.


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## everydayupsanddowns (Oct 14, 2012)

Hi there

Sympathise with your sons hospital experience! I was Dx at 21 and spent a week in a ward with some very elderly poorly people, some with various bits missing 

Thankfully 20 years later I'm still here all present and correct, and as others have said with carb counting, modern insulins, and a bit of moderation and some effort diabetes is something you can control, well most of the time anyway!


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## KarinBee (Oct 14, 2012)

Thanks to all who have replied to my post.  I am very tearful today, probably because I checked out Diabetes UK website and it really hit home and also because he was put on a really awful ward.  So pleased this forum is here so I can say how I feel and others, not just living with people with Diabetes, but those with it, can let me say how I feel without a patronising reply.

We are off to visit him again in about an hour so I am looking forward to that.

I plan to check out those books mentioned as I really want to learn as much as I can about Diabetes.

I just get so frustrated with the NHS - yes, I suppose we should be thankful for it, but when it comes to a weekend that is not the best time to be ill is it.


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## KarinBee (Oct 14, 2012)

Robster65 said:


> I hope he can join the forum too and learn how to have bad habits and get away with it.Rob



I hope he will.


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## Northerner (Oct 14, 2012)

KarinBee said:


> Thanks to all who have replied to my post.  I am very tearful today, probably because I checked out Diabetes UK website and it really hit home and also because he was put on a really awful ward.  Added to that I was told to 'get a grip' by my other half earlier today which is not the sort of response I thought I would get when I cried in front of him.  So pleased this forum is here so I can say how I feel and others, not just living with people with Diabetes, but those with it, can let me say how I feel without a patronising reply.
> 
> We are off to visit him again in about an hour so I am looking forward to that.
> 
> ...



Hi Karin, welcome to the forum from me too  Perfectly natural that you should feel emotional about your son's diagnosis - it's a big thing to suddenly have to deal with. The good thing is that he should be very quickly feeling much better now he is getting treatment. I was at death's door when I was diagnosed, but felt like I was glowing with health as soon as I started getting insulin! 

I would also highly recommend Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas - it covers everything and is written very well so it doesn't blind you with science. There are lots of other good sources of information in our Useful links thread.

Any questions you may have, please ask away - nothing is considered 'silly' or daft


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## KarinBee (Oct 14, 2012)

Type 1 Diabetes in Children Adolescents has been ordered.


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## trophywench (Oct 14, 2012)

LOL - pity we aren't on commission, isn't it?


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## Pumper_Sue (Oct 14, 2012)

KarinBee said:


> I hope he will.



Tell him there are some nice young ladies to chat to 

Please do note that you will hear loads of horror stories about blindness, limb loss etc. 
But very little about the success stories ie people who have gone 50, 60, and even 70 years with no problems at all.

Hope you have a good visit and your son is feeling better now.


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## KarinBee (Oct 14, 2012)

Pumper_Sue said:


> Hope you have a good visit and your son is feeling better now.



Good visit. Insulin and saline drips removed and had received two insulin injections today, only one drip with Pottassium in. He was able to Gwalior to toilet too!


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## Northerner (Oct 14, 2012)

KarinBee said:


> Good visit. Insulin and saline drips removed and had received two insulin injections today, only one drip with Pottassium in. He was able to *Gwalior* to toilet too!



Isn't that in India?


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## Tina63 (Oct 14, 2012)

Hi Karin and welcome.  My son was almost 16 at diagnosis.  It really is hard as a mum.  We caught it with my lad before it got to DKA thankfully, so he only spent 48 hours in hospital, but bringing him home it felt like coming home with a new baby all over again - that shocking feeling that your safety net has gone and suddenly you are on your own.  Be prepared for that feeling.  It's horrible.  We had this bag full of insulin, needles, blood testing gear, sheets and sheets of paperwork and just felt utterly bewildered.

My husband too seemed to think it was 'nothing' and couldn't understand my upset for quite some time, though he did have the odd weak moment at different times to me, so you never know, your husband may crack in a few days or weeks.

It doesn't matter how old they are, they are still your baby.  If you could take it all way from them you would in an instant.  It's awful feeling powerless to do anything about it.

Life does go on though, so go with your feelings at the moment.  Don't hide how you feel, you don't have to be brave all the time.

This is a wonderful place to come for support and advice.  Any time you need help or advice, or just to let off steam, post and we will all come back and help you.

Hope your son is home very soon and feeling much more like his old self.  Take care.
Tina


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## KarinBee (Oct 14, 2012)

Northerner said:


> Isn't that in India?



Ha ha, sorry, iPhone auto correct - running on auto pilot so never noticed.  Should have read *walked*


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## KarinBee (Oct 14, 2012)

Thank you Tina63.  Just reading your kind words set me off crying again.

My daughter and I sit and have a hug and a good cry so it's nice that I have her.

My son seems very accepting of it all and is one of those people who don't get flustered or upset about anything but I think he is now fed up of having finger pricks every hour since Friday evening.

I am pleased this forum is here as I feel I am going to need lots of support/times to let off steam - no one else to talk to.


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## trophywench (Oct 14, 2012)

How's his blood glucose been since he came off the 'sliding scale' ? (intravenous insulin delivery thingummy-bah) and has he met the outpatient team yet?  Cos you are sposed to, you should see the consultant and the specialist nurse,  before they kick you out on the street.

I highly recommend he has company when talking about his ongoing treatment if possible, because there's quite a lot of info to amass and it's easy to miss stuff, two heads are usually better than one.  And if you are chief cook and menu planner, then it would be as well to be there yourself probably.  (He isn't excused from the bottle washing though, don't let him get thinking he is !)

There should also be a dietitian available and he should also be asked if he needs any counselling as psych support should also be available.  (Quite often it isn't though, a big hobby horse of mine!)


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## KarinBee (Oct 14, 2012)

He doesn't meet anyone with any knowledge of Diabetes until tomorrow.  When I ring in the morning I think I will ask if I can be there when he is seen by the specialists.  I have been reminded, on more than one occasion, that he is now an adult and should find out things for himself but yes he still lives at home and I cook most of the meals so I want to learn as much as he needs to be told.
I know what it's like when you are told you have a certain condition, as soon as they tell you you kind of go into a bit of a daze and sometimes don't take in other things they are telling you.  Also, as his Mam, I am very concerned and want to know what is going on and be there for him whenever he needs me.

(Tomorrow my husband is having his first day at work after a cycle accident on 28th May and it's day 1 for the builders too so I have a lot going on in my head but my son is the most important of them all.)

Think his blood sugar levels were quite good after being taken off the drips - can't say what as I never looked at his notes.


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## trophywench (Oct 14, 2012)

Well, with a bit of luck and a following wind, they'll loose him out and then get him back in pretty soon (like a week or something) to an outpatient appt to see the Specialist Nurse, so don't worry too much if that doesn't happen tomorrow, cos if he wants you there, you can go to that.

And I recommend both of you to write down things as they occur to you, what would happen if?  Hang on, what am I sposed to do about THAT?  Did they tell me anything about whatever? etc.  Doesn't phase em if you go with a list!

Preferable to letting em think you know what you're doing, but NOT knowing!


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## Northerner (Oct 14, 2012)

I had a ten minute session with the hospital DSN, but then was in regular phone contact for the next couple of weeks for adjustments and any questions. They were brilliant


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## Tina63 (Oct 15, 2012)

I suppose it was because technically my son was a child, but we had phone calls twice a day for the first two days (despite it being New Years Day then Bank Holiday Monday) then on the Tuesday got a home visit from the nurse, then phone calls the next day, then home visit from the dietician on the Thursday, then continual daily phone calls for at least two weeks and probably twice weekly home visits in the second week.  After that we were left more on our own, with outpatient appointments regularly to start with, and weekly phone calls and a whole list of emergency and regular phone numbers.  Our team were amazingly supportive.  I have a feeling adults are much more 'left to get on with it' though, which is a shame, as there really is so much to learn and take in.

Any information they told us, they had paper handouts for us to keep too.  They suggested buying a ring binder and putting it all in, and it definitely was the way to deal with all the information.  I now have a ring binder full of information plus I keep his follow up letters from the hospital in there.

There is so much to learn, I would 100% encourage you to be there when the specialists see him if you possibly can.  It's all so overwhelming at the start.  We were all there at the hospital (me, husband and big sister (20), when a Diabetes Specialist Nurse came in on his second day.  She sat with us from 10am to 4pm, only disappearing off for her lunch, going through loads of stuff.  She was brilliant.  She gave us wads of paperwork, showed us in detail all the insulin pens (how to load and unload them and how to fix on needles), how to use the lancet and blood glucose monitor, we also all had a go at injecting into a rubber duck!  At least with all four of us listening, things one of us missed, the other picked up.  Of course we could ring for advice any time (and had a couple of very high readings the first couple of days after he was discharged and found myself ringing the emergency number at 11.30pm on New Year's Eve!) and you need to have access to emergency numbers in the first few days I feel.

You will find that despite his age, you son may well lean on his mum to start with for emotional as well as physical support.  It is very important you know how to operate his blood testing meter as if he is ever ill, or drunk as my dear son was a few weeks ago, it is important you are able to test him.  Had I not have been able to do that, I maybe wouldn't have realised how serious the situation was with my son but we ended up calling an ambulance.

Just thinking to myself as well, and getting ahead a bit, when your son is discharged he will only have a very limited amount of insulin/needles/test strips etc with him.  You will be instructed to take a prescription list to his GP to get a prescription signed before being made up.  You will then have to put in for regular repeats.  I would advise once you have put the first prescription in you don't leave it too long before you put a second one in.  Get in the habit of getting spares in, rather than ever chance running out.  Our GP takes 48 hours to do a repeat prescription so I actually now have a full spare box of all my son's insulin, spare needles, lancets and testing strips.  I would rather have too much than not enough.

You really will all be on an emotional rollercoaster right now.  Things will get easier with time, but just follow your instincts for the time being.  Your son will be fine, though it's hard to see that right now, but with a few adjustments life will go on just like before.

Keep your chin up.

Tina


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## Pumper_Sue (Oct 15, 2012)

Your son also needs an exemption certificate so ask his Dr to sort that as well. 
Hope all is going well today.


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## KarinBee (Oct 15, 2012)

So much to take in indeed!  After waiting for about 3 hours, the DNS turned up and she was very nice but as soon as she put all of his equipment on his bed I could feel myself starting to get very emotional. I held it all in until it came to him having to do a finger prickl hiimself and I could contain myself no more. Of course she was very understanding. My son was very calm, dealt with it all like a good 'in and asked loads of questions, as did I. 

He is now home and I am not being over protective. I have said it is best that he takes a couple of days off college so that he can get used to his new way of life, myself, his sister and Dad will all be here tomorrow. 

As for the prescription list - is this something someone will supply the GP with or does he have to list everything himself and ask for it?


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## trophywench (Oct 15, 2012)

I'd do both frankly with the prescription list - hospital letters have to be typed, signed, posted, arrive, get themselves scanned, have a doctor look at it, have the doctor do whatever he needs to do ...... which takes time!  Short circuit that is my advice!   The sooner he gets on the GP Radar the sooner they will sort out all the things we get - like retinal phtography, feet checks and all that jazz.  And you need to get the exemption certificate sorted via the doctors surgery.  If you ask at reception, they should have a pad of forms, which you complete - used to have to post them yourself but ISTR they do it now - but they will tell you that anyway.

If you need a scrip before you get the exemption card, go to the pharmacy and see if they'll supply free when they see what it is.  If not, you MUST get a receipt for everything and reclaim it back from the PCT.  They should advise how you do this.

Moving on - If you ever have to purchase anything without a scrip (eg run out of strips on a Sunday, but try not to do that!) then a) it should be VAT free so they will have a form for you to complete to say I have diabetes and am VAT exempt and b) again get a receipt and when you get the scrip for that item (asap!) go back with the scrip and the receipt and ask for a refund, and they then process the scrip but don't hand over any more (strips) - so they get the money back from the PCT as per normal.

If you are met by completely blank looks from the girl behind the counter at any stage - ask to see the pharmacist! - because they are very aware of what is and isn't pukka.  V helpful usually.


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## KarinBee (Oct 16, 2012)

Well, I slept on and off last night, worried that he was okay, and indeed he is.

He, his Dad and I all sat in the living room last night and had a good chat about his condition, told him that we will both be there for him anytime he needs us and it seems that it is me who is most anxious/worried about him living with Diabetes!

He'd done his blood test and was 6.3, written it down in his book and then had some toast - yes, I know he is 19 but I felt like I felt when he took his first steps or had his first day at school, so proud of him.  I didn't tell him of my feelings obviously as I really need to keep a step back and stop showing my worry. I kept asking if he was okay every time I saw him and need to stop doing that as much too or I will end up annoying him.

My worry is now food as he was always a fussy eater to start with so I need to provide better food and try to get him eating a wider range of foods as he will get fed up with beans on toast.  Where do I start? I know he can more or less eat what he wants in moderation but as a family we could all really benefit from eating bette food and at the right times of the day.

What about other health concerns, retinal screening, feet checking, etc? The more I am learning the more I want to learn.

My last point in this posting is how youngsters living with Diabetes and those of you parents who have teenagers with the condition let the rest of the world know that you/they have it, I.e. ID card, bracelet, etc?


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## Copepod (Oct 16, 2012)

Try to remember that there's more to life than diabetes. What is your son doing currently? Work / college / apprenticeship / looking for work etc? What about his interests - sports / music / socialising etc? You're right that it's important not to concentrate soley / talk only about diabetes. 

If he doesn't already have a driving licence (whether provisional or full), he'll need to apply to DVLA and tell them about diabetes treated with insulin - but no immediate rush. If he does already have a driving licence, he needs to inform DVLA about change of medical circumstances - he'll need to get advice from his diabetes team about how to fill in forms thta he'll be sent. 

Health checks, such as retinal screening and feet, tend to be anual, and as he's only just been diagnosed & started insulin, (and not after a period of symptoms before diagnosis and starting treatment, during which damage can occur, which is relatively common in adults with type 2 diabetes) there's no need to check for a while - so, take it easy for now; one less thing to consider for a while.


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## KarinBee (Oct 16, 2012)

He;s currently a college student studying IT.  He's having a couple of days at home to get into the swing of his new way of life then back at college on Friday as usual.

He hasn't passed his driving test but does hold a provisional licence so will have to inform the DVLA.  

Today is back to how life was before he was ill last week.


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## trophywench (Oct 16, 2012)

Was what I meant about getting on the GP's radar, none of the things are urgent right now, but unless you get on that List, you won't be included in the invitations to have these things done when they do need doing!

Oooh - just thought! - he can have a flu jab now!


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## fencesitter (Oct 16, 2012)

KarinBee said:


> I kept asking if he was okay every time I saw him and need to stop doing that as much too or I will end up annoying him ... how youngsters living with Diabetes and those of you parents who have teenagers with the condition let the rest of the world know that you/they have it, I.e. ID card, bracelet, etc?



Yes, we were constantly asking if my son was OK at first too. He said to my mum: "Granny, you're being too helpful" 
On the ID question, I did try to get him to wear a wrist band but he refuses to. At least at home or at school, everyone knows about his diabetes, but when he starts going out and about on his own I hope he will reconsider. My T1 uncle has a pendant that any paramedic would quickly spot, but as far as I know in all his 50 years with T1, the situation hasn't arisen. Nice to have the reassurance though.

It's all a bit overwhelming at first. Sounds like you're all doing really well.


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## Tina63 (Oct 16, 2012)

Yes I too wanted my son to wear some sort of ID, but he wouldn't.  I would advise you tell him to let college know of his diabetes.  When it comes to exam time he will be allowed extra time if he has a hypo during an exam etc.  But also if he is unwell whilst at college it's important they know.

Re the prescription business, we came away from the hospital with a list of items required which we were told to take straight to our GP surgery and they had the prescription made up by the end of the day.  Depending on how much stuff your lad has been sent home with will depend how urgent it is to get it sorted, but the sooner the better.  I had forgotten about the exemption certificate too, but as my lad is still under 18 we haven't got to that yet.

We all did the fussing at the start, and still nearly two years on everyone who sees my son asks him how he is, or asks us, which drives him insane.  Just be prepared for that.

What insulin has your son been put on?  Has he been taught carb counting?  We were advised to just carry on eating as normal pretty much, a good mix of protein, carbs and veggies on a plate, a normal healthy diet.  Puddings are fine as long as eaten pretty much straight after the meal, and we were given an example of a lunchbox which is exactly what my son would have taken to school anyway - sandwiches, crisps, piece of fruit and chocolate biscuit, cake or cereal bar.  With food labelling these days carb counting is pretty straightforward, you soon get used to how many carbs there are in a slice of bread etc.

You will have loads more questions over these first few weeks to so don't hesitate to come on here and ask anything you want to know.

When is your son next being seen by anyone?  Keep up the good work, you all sound like you are taking it all on board.  Hang on in there!

Tina


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## kayleigh1991 (Oct 28, 2012)

KarinBee said:


> Well, I never thought I'd be joining a forum such as this.  I am still in a bit of a daze.
> 
> My son, 19, started feeling very tired last week, very thirsty and on Thursday he was sick.  Friday morning he went to see his GP and by Friday afternoon he was in hospital with DKA and then confirmed with Diabetes Type 1.
> 
> ...



Hello,

I'm new to this forum (and diabetes!), but I just thought I'd say that I was in your son's position about a week before him! I'm a 20 year old girl, and I'd been feeling quite unwell, and ended up in hospital with severe DKA too, also never having had any previous medical intervention! It was a real shock, going from being very healthy to suddenly having type 1 diabetes for the rest of my life. My mum said exactly the same as you, that she wished she could take my position, but I'm sure your son wouldn't want that. 

To be honest, it's terrifying. I'm already feeling overwhelmed. However, seeing a dietitian and reading about the huge variety of food diabetics can eat reassured me a lot. I've spoken to a few diabetics already who say that they can now eat a diet pretty much resembling what they ate pre-diagnosis thanks to being able to adjust insulin for carb amounts, which I haven't learnt to do yet as it's still very early days. 

Don't let your son do what I did and start looking into the complications just yet! It's playing on my mind a lot, and that's the last thing you need after a big diagnosis like this!

And about the Christms chocolate etc. - people keep asking if I can still eat chocolate, and my response is "Yes, but 'unfortunately' it has to be excellent quality dark chocolate now - poor me!"

I'm not sure if there's a way to message people on here but if there's anything you or your son want to know, it looks like I have about a week's headstart in the diabetic world if either of you want to speak to someone around his age who knows what you're both going through!


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## HOBIE (Oct 28, 2012)

Well done for being so "Positive" . Keep at it


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## fencesitter (Oct 28, 2012)

kayleigh1991 said:


> "Yes, but 'unfortunately' it has to be excellent quality dark chocolate now - poor me!"



 So funny Kayleigh, every cloud and all that


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## Estellaa (Oct 28, 2012)

Thought i'd add a post to this, I'm an 18yr old girl had diabetes majority of my life, so I'm more than willing to help, if your son has facebook or something then i'd be more than willing to talk to him for any advice and anything personal he wants to know!  x


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