# What happens now?? My 13 year old son just diagnosed type 1



## MelanieG

Hi everyone, I'm new on here, and new to diabetes. 
Last week my eldest son (13) was diagnosed type 1, and we are all still in shock, and trying to get our heads around this new way of life.
He is so scared of the needles, and worried about what is happening to him, and I'm doing my best to understand what diabetes is and how we cope.
Any help would be great as its all so scary at the moment and I need to see my son smile again.
Thank you
Mel
Mum to Thomas age 13, Elliot 10, and Lucas 5.


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## Lauras87

Hi mel & welcome to the forum.

What aren't you sure about?

Can I ask what size needles is your son using?

If you have questions, we will do our best to help


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## Northerner

Hi Melanie, welcome to the forum  Very sorry to hear about your son's diagnosis, but I would like to reassure you that there is plenty of help available to help you understand what it entails and how to deal with it, and there is no reason why he should not be able to do everything he wishes to do in life - it just takes a little extra planning!

I would recommend starting by reading Adrienne's guide to parents of newly-diagnosed:

http://www.diabetessupport.co.uk/boards/showthread.php?t=23853

Also, you should get a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas - an invaluable resource and reference guide. There are lots of other sources of information in our Useful links thread. You might also like to join Children with Diabetes, a resource set up and run by UK parents.

If there is anything you are unsure of, please ask and someone is bound to be able to help. What insulin regime is your son on?


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## MelanieG

Thanks all, tom's on the smallest needles at 4mm, and 4 injections a day, before each meal, and a long acting night time one. We are still trying to get his levels under control, and still unsure of what he can and cannot eat. Espeshally with Easter, and his other brothers who will be able to eat chocolate. 
How I get him back to school after the Easter hols is also a worry as I can't see how he will be able to inject himself when he can't even look at a needle :-(
I will look into the book and info, thank you so much, I've been so worried and I don't want him to see me upset.


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## delb t

Hi Melanie- my son was diagnosed about 15 months ago now{he was15] and its still fresh in my mind how difficult it all was at the start but it deffinately will get easier and a way of life- just more planning as northerner said. There is a hell of a lot to take in to start off with -I knew zero about diabetes!  My son was ok with the needles - but we had to get our heads around the sporty side of things as that was important to him. The one thing I was glad we did from the start was to eat out in public and inject at the table etc as I didnt want him to have a hang up about injecting in public- this has paid off and he will inject anywhere!.His diabetes has not stopped him doing anything he didnt do before- everyone on here will help you with anything that crops up.I still need to ask loads!!.- Glad you found us and welcome from me


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## Lauras87

He can eat anything as long as he counts it.

Easter wise he can have chocolate but maybe a small chocolate & another treat (like a comic/book kinda thing?)

I don't like needles so I know your worry, how is he with his lancets?


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## Hanmillmum

Hi Melanie, sorry to hear about your son's diagnosis 

His levels may take a couple of weeks to settle down, we found this after the diagnosis. 

With regards to what he can eat, most things as long as the insulin covers it. You will probably be counting carbs before long to allow more flexibility with food. So a bit of chocolate egg - yes though probably best after a meal at the moment.

How about him getting used to being able to watch you inject him as a first step, lots of encouragement. Then you can part share the task until he is able to do it independently.

Things will feel easier in time for you all x


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## Northerner

Whatever you do, don't get any 'diabetic' chocolates or sweets etc. for him - the ordinary stuff is OK in moderation and best eaten at the end of a meal as it will then have less impact on his levels.

I'm guessing he is on fixed doses currently with his meals? Hopefully you will be taught to 'carb count' soon so tat you can more closely match his insulin to his carbohydrate intake - it's not as complicated as it may seem right now! 

You should discuss with his DSN what arrangements need to be put in place for him at school - who he can go to if there is a problem, what must be available to him and so on. Hopefully he will get used to the needles before too long. The injections should be more or less painless, but if he is tense when injecting then this can make it hurt more. Did he lose a lot of weight before he was dagnosed? How did he come to be diagnosed?


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## delb t

Just read your thread- what support have you been given? can you ask the nurses to call in at a mealtime so that they can support him at injection time?before he goes back to school a care plan will need to be set up with the school- our team arranged a meeting . you will need supplies for school eg gluotabs /biscuits  spare meter etc .Our sons levels were all over the place to start with and every few days we had to alter one thing or another.-this soon settled - the most important thing is to test . is he ok with the blood testing? Your team should arrange a meeting withthe dietician {for what its worth] but the upshot is they can eat some chocolate  following a meal  adding the carbs for it and I would at easter- he doesnt want to be different from the other children


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## MelanieG

Thank you everyone for your response, we don't feel so alone now, we've had the best advice ever on here. we've had the nurse around a couple of times, but not over Easter. He is ok with the lancets, I think he could do that for himself soon. The advice on first stage is to get him used to seeing the needle while we do it, makes so much sense. It's hard when you are wrapped up in the moment, to make sense of it all. I am so happy I posted on here today. Very emotional but much happier to have heard advice from you all.
Thank you


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## Lauras87

I'm glad you feel better about it.

Can I ask a stupid question? Did your son get admitted to hospital when he was diagnosed? Just when I was admitted I did my first injection on my own with the nurse sat by me & wondered if he had done that?


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## MelanieG

We did get taken to hospital where it took about an hour to get a needle any where near Tom. The nurse did it for him while they held him down.  I just can't see how he will be able to do this for himself. Aged 13, he's the bravest person I know.


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## Lauras87

Ahh ok.
I'm just trying to think of something to help your son deal with his fear of needles.


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## Northerner

Lauras87 said:


> Ahh ok.
> I'm just trying to think of something to help your son deal with his fear of needles.



There is something you can get that shields the needle from view - can't remember the name of it at the moment but I know one or two of our members have used them for their children...will post if I remember or perhaps someone knows!


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## Lauras87

Northerner said:


> There is something you can get that shields the needle from view - can't remember the name of it at the moment but I know one or two of our members have used them for their children...will post if I remember or perhaps someone knows!



My fear of lancets I got over by using them on mum & needle wise I think I stabbed a teddy


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## MelanieG

Ok great thank you. I've heard a bit about the pump but don't know if that's an idea for him in the furure, or not feasible?


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## Lauras87

MelanieG said:


> Ok great thank you. I've heard a bit about the pump but don't know if that's an idea for him in the furure, or not feasible?



It could be once he gets sorted & meets the pct criteria's.

Good thing is no needles unless he opted for the cannulas with needles (I haven't!) I hate needles & I'm normally in a state when I have blood taken


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## claireD

Hi
My daughter is 12 and was diagnosed in October we were advised to get her back to school and normal routines ASAP she came out of Hospital on the Thursday & went back to school on the Monday which I did really worry about but it really was the best thing for her to get back to normal, having said that she wasn?t worried about doing her own injections and has always done them herself. I can see that it?s a whole different matter if your son is worried about the injections hope all goes well for you


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## trophywench

Laura, cannulas have an introducer needle down the middle of em - you can't get a bit of bendy teflon through your skin otherwise!

But, if you use what we usually call a 'whanger' - to 'whang' em into you - that shields the needle as well as the bit of you it's going into - so you can't see it going in.  Which to me - is the very worstest bit.

Melanie - have you given YOURSELF a jab?  Not with insulin obviously! - but have you stuck a needle in you?  Cos seeing you do it, might encourage him?

If you have the pens with separate insulin cartridges - take the cartridge out, join the pen back together without, screw a needle on, uncap it and away you go.  If not, just take a needle out of the box, extract it from the outer casing, hold the plastic bit carefully between thumb and forefinger, remove the cap, and jab. (if you can't get it out of the outer casing, just screw it on a pen VERY slightly, withdraw the outer and unscrew the needle.)

You shouldn't actually be able to FEEL it at all whatsoever - other than the pressure of the bit where the needle itself joins the plastic part, pressing against your skin.


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## Lauras87

trophywench said:


> Laura, cannulas have an introducer needle down the middle of em - you can't get a bit of bendy teflon through your skin otherwise!
> 
> But, if you use what we usually call a 'whanger' - to 'whang' em into you - that shields the needle as well as the bit of you it's going into - so you can't see it going in.  Which to me - is the very worstest bit.
> 
> Melanie - have you given YOURSELF a jab?  Not with insulin obviously! - but have you stuck a needle in you?  Cos seeing you do it, might encourage him?
> 
> If you have the pens with separate insulin cartridges - take the cartridge out, join the pen back together without, screw a needle on, uncap it and away you go.  If not, just take a needle out of the box, extract it from the outer casing, hold the plastic bit carefully between thumb and forefinger, remove the cap, and jab. (if you can't get it out of the outer casing, just screw it on a pen VERY slightly, withdraw the outer and unscrew the needle.)
> 
> You shouldn't actually be able to FEEL it at all whatsoever - other than the pressure of the bit where the needle itself joins the plastic part, pressing against your skin.



Thank you! I remember panda with the cannula with a needle in & a foam pad but didn't see a needle.

And I did wonder about suggesting what you did to help Tom with needles (mum drew the line with that)


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## LeeLee

Just one more thought to add to the mix... you might consider hypnotherapy.  It can be very effective for phobias.  I'd be surprised if you could get it on the NHS, but a few sessions should be all that's needed.


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## Tina63

Hi Melanie and welcome from me too, another mum.  My lad was 15, almost 16 at diagnosis.  He had a massive needle phobia, hence how it took us ages to get him to agree he needed to see a doctor/go into hospital as we all knew it was diabetes, had planted the seed in his mind, he did a bit of research and freaked out.

However, once there, and yes sobbing uncontrollably whilst they took an armful of blood from him (with the magic cream on first despite his age) he did overcome his fear pretty quickly.  The first injection was done by a professional, but when it came to the second dose the approach of the night shift nurse was so good, she did a bit of the reverse psychology on him and I suppose made him feel he almost had to do it, so he did.  I was so proud.

He has said many a time the lancets for the blood tests are FAR more painful than the needles.  I have done as others have suggested and put a needle in my tummy.  I can 100%  confirm it is painless, and I have used the lancet gadget too and again agree that can be quite painful.  It's hard to understand his fear given that he does allow others to inject him and I really don't know what to suggest, other than to ask for your team's psychologist to see him as a matter of urgency.  They must come across this fairly often I would have thought.  Does he resist when you inject him, or does he just look away and let you get on with it now?

Not meaning to sound cruel, but would it be worth playing on the "You really will have to conquer this and start doing it yourself because won't your mates make fun of you if I have to come into school every day to inject you?"  Sadly children can be cruel, and if you do start having to go in every single lunchtime there will be some children who start to make fun of him, not necessarily his own friends, but others will.  He is going to be taking himself out of his friendship group every single day to be injected as you will almost certainly have to go somewhere private to do it, so he will be losing valuable time with his mates and more and more this might push him out of his own social group.  If he can gain confidence to do it he can probably just sit in the classroom at the end of the pre-lunch lesson with a friend or two and within 3 or 4 minutes can have tested, injected and be back out in the playground or dinner hall with his friends.

Has he told any of his close friends yet?  Have any of them been round to see him at home and seen any of his kit?  My son didn't want to tell anyone at all at first, but in the end did contact his closest friend who came straight round.  This friend has seen all his kit and I am sure has witnessed him injecting, and I think it's invaluable to start educating their closest friends as soon as you can too.  

How are the rest of the family doing, you included of course?  It is one hell of a shock at first.  Though we knew what was wrong with our son (his onset was slower than typical, though still scary to witness the dramatic weight loss) it still didn't take away the enormity of it all and the drive home from hospital was my lowest moment in all of this.  I really felt I had been hit by a sledgehammer.  In hospital we had all the security of the nurses and doctors around us, suddenly we were alone with it all.  I know we had the team on 24 hour contact by phone, but it was utterly bewildering and scary to suddenly take charge of this, scared at every blood result in the early days, panicking when things started rising dramatically again only a few hours after discharge.  At the start you feel life will never be 'normal' again.  Yes it's true, certain things take more planning, but as everyone will tell you, there is nothing you can't do that you couldn't do before.  Ok, there may be the _odd_ profession your son can't now consider, but personally I am chuffed my son can't be accepted into the army and sent away to war.  Selfish maybe, but I am happy to know that isn't an option for him.

Your son can carry on with any sports or hobbies he had before, it may just take a bit of experimentation at the start to see how it affects his levels, and you must learn to carry supplies of glucose (coke, OJ, dextrose tablets, jelly babies - whatever your preferred choice) round with you AT ALL TIMES and your blood testing kit.  This will become second nature very soon.  Make sure you have glucose supplies all over the house, upstairs and down.

Also, another good habit to get into is ordering your son's repeat prescriptions in plenty of time.  I presume you have been sent home with just minimal supplies?  Have you been given your first GP prescription yet?  Don't leave it long before you order more.  Get in the habit of ALWAYS having twice as much as you need in.  As a rule of thumb, I always have a whole spare box of each type of insulin in.  As my son opens the last box, I order a new one.  Same with needles, lancets and testing strips.  Keep spare boxes in.  It's no good arriving at a 4 day bank holiday like now and finding you are on your last 3 needles and your GP doesn't open for 3 more days.  

The early weeks are a real rollercoaster.  There is so much to learn, it's far more complex than anyone can possibly imagine before beginning on this journey.  This place has been invaluable to me though.  I have learnt far more from here than anywhere else.  Though the hospital and my son's team were excellent in the early days, you still only get your alloted appointment time and things crop up all the time you want answers to.  This is the place to come to to run things by.  You get wonderful advice from people living with it day in, day out.  

Keep your chin up, but crying is allowed too.  Do let your feelings out when you need to, all of you.  It is one hell of a blow.  You will come to terms with it all in your own time though.  Oh, and one other thing I would add is don't forget your other two children in all of this.  They too will feel the enormity of it all, but over time some resentment may build up if they see all this attention being lavished on their elder brother.  Maybe make some special one-to-one time with each of them before too much longer and also encourage them to voice any fears they may have.  Even if you can't answer any questions they have immediately, you can always tell them you will find out (from here probably!) and let them know as soon as you can.

Good luck with it all.

Tina x


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## MelanieG

Tina thank you so much for taking the time to post all of that great advice, you have got Tom down to a t. He too had to have the magic cream, and yes I think at some point I will have to be tough and say he has to do it himself. I have done the finger prick on myself, and his dad had the injection in his tummy to show Tom, but he refused to look. He doesn't now try to push us away with the injection, he accepts it, but insists he mustn't see the needle. 
I picked up his first repeat prescription on Thursday, but your right, it doesn't seem like much. There is so much needed!
Laura, what are pct requirements?
I don't think Tom has come to terms with what has happened yet, the poor thing broke his arm only 4 weeks ago, and still has his arm in a brace so he was dealing with that when we finally got him tested for diabetes. 
I feel bad, as I was telling him off for going to the toilet so much, and telling him not to be silly drinking pints and pints of water. I just didnt know. 
I think my main thing is I look at him and think how did this happen. He was fine, and then he wasn't. I'm just so glad we have the medicine to give him, or we would be coming to terms with something worse.
He doesn't want any friends at school knowing either, he says it's uncool and they wouldn't understand and would pick on him.
I have Easter hols to work on all of this, but it's not going to be easy. I need him to realise he's not the only one with this condition. All he says is "will I be ok mum?"


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## MelanieG

Your right about his brothers too, they have been out of sorts, I've been spending extra time with them, but somehow need to explain what's up with Tom, without scaring them.
Thanks again everyone.


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## Lauras87

I don't know what each pct (primary care trust) requirements are.

When I first went for a pump I didn't get it coz my blood sugars were too tightly controlled.

This time round, my sugars are still the same but I have a lot of hypos & live on my own.

The pct funds it & it's not cheap, think its ?3.5k for the first year & ?1.5k every year after, a pump has a 4 year life span.

When your son gets to grips with diabetes & injects himself, maybe you could ask then. 
Most hospitals are putting kids on the pump (according to my care team)


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## Northerner

MelanieG said:


> ...I think my main thing is I look at him and think how did this happen. He was fine, and then he wasn't. I'm just so glad we have the medicine to give him, or we would be coming to terms with something worse.
> He doesn't want any friends at school knowing either, he says it's uncool and they wouldn't understand and would pick on him.
> I have Easter hols to work on all of this, but it's not going to be easy. I need him to realise he's not the only one with this condition. All he says is "will I be ok mum?"



Type 1 is usually totally unexpected. I was due to run a marathon the week I was diagnosed, so fit as a fiddle until it hit me! However, I got back into my running, running the Great South Run four months after diagnosis. I was fortunate to be diagnosed as an adult, and things will probably be trickier for him as he is a growing lad, but I know of hundreds of people diagnosed at his age and younger who are living full and happy lives despite the challenges. I hope that, before too long, he is able to accept his diabetes and not let it stand in his way  He WILL be OK!

If you want to read up about insulin pumps, I would recommed having a look at the INPUT website: 

http://www.input.me.uk/

A pump might be a big help since he would be able to give his insulin at the press of a button rather than having to inject. However, he will need to learn how to control his diabetes on injections before being considered.


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## Cleo

Hi Melanie and welcome to the forum.  

I cant offer much advice re the needle phobia, but I think the other members here have done that already!  I was diagnosed when I was 19 (in 1995)  and in my second year at uni.  It was alot to take on esp. as uni life can be a bit crazy at times.  All I can say is that alot of changes are probably happening right now for your son and your family, but everything WILL settle down in time .   I think its normal for this initial period to be full of questions, uncertainty etc but I am sure that will pass as you get more used to the new routines. The bottom line is that diabetes shouldnt get in the way of anything - yes it requires a bit more planning but in theory there's nothing that he shouldnt be able to do, as long as he looks after himself.  

Good luck with everything and do keep us posted!! 

C xx


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## Pigeon

Hi Melanie, sorry you had to find us but pleased that you have found us so soon, if you know what I mean!

I got diabetes when I was 26 and I'm not a parent so I can't add to any of the excellent advice you have been given by parents of other teenagers or people who were diagnosed as a teenager. 

Just wanted to say that I found out I was diabetic on Easter monday 6 years ago, timing was terrible as I had a house full of chocolate! I hid it all in the back of a cupboard while sobbing, thinking I would never eat chocolate again!

But 6 years on I will receive as many easter eggs as the rest of the family, I learnt how to carbohydrate count early on and you can correct for chocolate and other treats by taking more insulin - or use them as fuel to stop you having a hypo when out walking!

I'm sorry to hear about your son's needle phobia, I hope he overcomes it soon and within time  you'll find that diabetes is perfectly do-able. It just takes time and patience!


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## Tina63

Hi Melanie

Just a thought - has Tom actually SEEN the needle for his insulin pen?  Is he possibly imagining something much bigger than it is?  Only a thought.  If he has never looked he might be amazed at how small it is.  My son on diagnosis only just over 2 years ago was given a right assortment of needles, 8mm, 6mm and 5mm, but they started day one on 5mm (teatime) and by morning the proper Diabetes Specialist Nurse (DSN) came in with a bag full of 'goodies' and in there were some 4mm needles and we have never looked back.  I one day took an 8mm needle out of its pack to just compare, and it looks ENORMOUS (though it's still really not) compared to the 4mm, but compared to a needle like for instance to give you a tetanus shot, it's far smaller and finer.

I also imagine in hospital they took a 'proper' blood test from a vein, and is he possibly imagining that size needle, which lets face it, is really big compared to the 4mm ones?  Just wondering.

My lad came out of hospital on the eve of his 16th birthday, New Year's Eve, and we had already been out and bought a load of party food.  I was gutted.  Feeling like it was the end of the world.  That evening his blood levels soared even higher than they were on admission to hospital 4 days earlier despite being on the insulin, but he survived!  I panicked of course and rang the emergency out of hours number they gave us!  In the early days his levels were very up and down - he was put on fixed doses at meal times for the first few days, but then we met his dietician and we learnt to carb count and that made things much easier.  That may sound daunting at first, but really it's not.  Once you start it's so easy.  It becomes second nature.

As others have said, essentially he really can eat what he wants as the insulin will cover it, but there are certain rules it's wise to adhere to.  Namely as others have said things like sweets and chocolate should form part of a meal and be eaten as dessert rather than eating just because he fancies them.  Let him have any easter eggs he is given this weekend but get the whole family disciplined to eat them as pudding each day.  In the early days I thought my son would never be allowed an ice cream on holiday, or as others have said, easter eggs.  Our dietician suggested a lunchbox for school as pretty much what I would send anyway, sandwiches, crisps, fruit, yoghurt and a biscuit/cake (chocolate covered if you like!)  The big thing to remember is to supply sugar free drinks at all times.  Most squashes come in a 'no added sugar' version, or a cup of tea without sugar, or with sweetners if needed.  We were told a small glass of fruit juice at breakfast was ok if taken with food, but as many will tell you, it's far from ideal so probably best to avoid most of the time.

Another thing I have thought of, have you got something for him to carry all his kit around in?  I found a pencil case was ideal.  I found a Simpsons' one in WHSmiths which had 2 compartments, so one side was ideal for his meter and testing strips and lancets, and the other side for his pens and needles.  And a pack of Dextrose tablets fitted in there fine too.  He will get used to carrying all his kit around with him, so finding a small bag he likes would be a good idea early on too.  For girls it's so much easier as people think nothing of a girl carrying a bag around all the time, but not so easy for a lad.  Even a drawstring gym bag will do, but something he can put his pencil case and maybe a small can of coke/bottle of lucozade in.

My lad's diagnosis was in the Christmas holidays and in some ways it's good as you have some proper time at home to get used to things quietly, but the apprehension of sending them back to school just builds and builds.  Though you probably won't be aware of any others, chances are there are a few other T1s at your son's school.  We discovered there were about 6 or 7 others at my son's school.  You may or may not have a school nurse - do you know?  Your DSN should be in touch with them on the first day back but chances are school have dealt with it before.  

Do talk openly to all your family.  Your other boys may be fearing things too.  Do let them share their feelings.  And do encourage your son Tom to talk.  Keeping lines of communication open is vital.  I'm sure Tom is still stunned by it all at the moment, but things will get easier in time.  

Good luck, and keep talking!
Tina x


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## delb t

Hi I had a thought too- it might be a thought speaking to the head of year to ensure all the teachers are aware of the care plan -I remember H went offsite for a games lesson and that teacher didnt know at the time .The teachers all need to know that he may need to test in class should he feel low and treat if needed.- so his mates will end up knowing I guess


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## trophywench

It may be worth a bit of name dropping - eg sportsmen and women who have diabetes?  

Not much use to him but eg Gary Mabbut had a successful Division One (Premier league!) football career with Type 1.  Look at Steve Redgrave - he is Type 2, but he uses insulin!  In fact he has an insulin pump, which is most unusual for T2 but hey - he ain't really a very usual sort of a bloke, is he?

The other thing you may like to consider and uncool though he may think it will be, it won't LOL - is Diabetes UK days out/holidays/family weekends.

Dunno where you are in the country but their 'Big Event' days are excellent and you can take ALL your kids - the kids (D & non D) are whisked away to do stuff like abseiling for the older ones and not quite so dangerous stuff but equally exciting things for the smaller ones.  While you listen to various experts and diabetics telling it like it is - different sessions for different things, I would have liked to have gone to ALL of them but it would have taken 3 days and it's only one! - so you choose which ones you want when you get there.

The Big Event is in Altrincham this year, and there are family events here there and everywhere - see http://www.diabetes.org.uk/Events_in_full/Care-events/Family-Events/Family-Event-2012---Altrincham/

and then click on the link on the right in the box, re the family events.


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## MelanieG

Altringham would be great, I will look into that, although we're from Hertfordshire, I was born in Manchester and have lots of family in and around that area, so we could def go to that


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## fencesitter

Hello and welcome from me too (mum to William, now 15). William was diagnosed at 13, exactly 2 years ago. He is just fine now, although if you'd told me that at the time I would have struggled to believe you!
The thing I most wanted to say is 'knowledge is power'. The amount of info you have to get your head round is a bit overwhelming at first, but you'll soon get the hang of everything and feel more confident. The Ragnar Hanas book that Northerner mentioned is our Bible, really good. It's probably a bit too much of a tome for your son right now, so maybe get him one of those slim volumes from the chemist - there's one on diabetes. There is a website for teenagers here that he might like to visit too: 
http://www.diabetes.org.uk/Guide-to-diabetes/My-life/Teens/ 
Diabetes doesn't have to hold your son back. There'll be a bit of learning to do at first, but soon he'll be able to do his favourite sports, trips out or whatever just like his friends. It's great that you have the Easter holidays to get used to the basics. You'll be amazed how much everyone in the family has learned by the time he goes back to school


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## MelanieG

Tina that's a great idea about fitting what he needs into a cool pencil case for school, I will take him out and he can choose one 

As for the needles, he's not looked at it, but he did see the one in hospital when they did the blood test and that didnt help. I don't think he cares about size though, it's the fact that its a needle and he wants it no where near him. It's been a week though, and he's better at letting us do it now, it's just working on him doing it himself.

I hope we get to see the dietitian soon as counting the carbs you all say to do, is a bit confusing at the moment, but I'm glad he can eat his chocolate if he eats it as his pudding. His readings are varying fom 6 in the mornings to around 15 in the day. I've bought things like fanta zero, and as he likes his crisps, I read that skips/quavers were better. puddings we are struggling with, I've got jelly but he'll soon get fed up with that.

I'm feeling so much more positive having read everyone's story's and advice, it's been more beneficial than anything any professional has told is so far. )


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## MelanieG

Thank you willsmum, we have ordered that book, and I've told him the website.
Glad to hear your son is living a normal life as that's what Tom keeps saying " mum just let me be normal again".


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## Pumper_Sue

MelanieG said:


> As for the needles, he's not looked at it, but he did see the one in hospital when they did the blood test and that didnt help. I don't think he cares about size though, it's the fact that its a needle and he wants it no where near him. It's been a week though, and he's better at letting us do it now, it's just working on him doing it himself.



Hi Melanie,
              sorry to hear about your son's problems with injecting himself. It must be very hard at that to start a new way of life.

The way I learn't to do my own injection as a child was, my Mum telling me I could not go on a school trip because I would not do my injections myself. She even called me a baby  That made me learn quicker than anything else  I went on the school trip. Back in those days the needles were the size of harpoons. 

You need to talk to the hospital team about his fear of needles so they can address the problem with him. He needs to get over it or tolerate needles to stay alive. Can he do his injection with his eyes closed to start with? Cap on needle so it can't be seen, dial the units, close eyes and take the cap off and inject. Not ideal but it's a start. Not even sure if it's practical as I have never used a pen.


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## Northerner

The device I was thinking about so he doesn't need to see the needle is the Novofine Autocover, there's a video here:

http://www.youtube.com/watch?v=qpfJTM8JvZE

Of course, it would be much better if he didn't need to use these, but you might like to talk to your team about them - they should be available on prescription


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## MelanieG

Northerner said:


> The device I was thinking about so he doesn't need to see the needle is the Novofine Autocover, there's a video here:
> 
> http://www.youtube.com/watch?v=qpfJTM8JvZE
> 
> Of course, it would be much better if he didn't need to use these, but you might like to talk to your team about them - they should be available on prescription



Wow I've just watched the video, this would be great! I'm going to ask the nurse about this ASAP! Thank you!!!


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## Tina63

The only thing I notice with that video is that the needle in the device is 8mm long.  Do they come in varying lengths?  If not, though it solves one problem, it may be less comfy than the 4mm needles he is used to at the moment.  Only my observation.

Made me smile that the advert at the start of the clip was for Stannah Stairlifts!  Kind of inappropriate when I would have thought these devices were mainly aimed at children!  Just tickled me!


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## trophywench

LOL at the Stannah Stairlifts Tina !

My mate love her mum's stairlift - she used to say it was really useful taking piles of ironing upstairs or sending her suitcase down when she was going on holiday!  She was gutted after mum died and the council came and reclaimed it!

Melanie the bit I want to pick up on is this 

and as he likes his crisps, I read that skips/quavers were better. 

You need to start reading labels Mum!  The back of almost very packet/tin of anything has the nutritional info on the back in little writing.  The one thing you are really interested in is the Carbohydrate content.  Ignore the 'of which sugars' - cos sugar is just a carbohydrate same as flour or spud etc.

So what's in my kitchen?  Per pack - Walkers C & O are 17.1g carb, Mini Cheddars are 12.9g and Tesco's Cheesy Curls are 9.1. (these are like Quavers but in slightly snaller bags and cheaper LOL)   Hula Hoops are actually 15.1 which surprised me cos I thought they were less.  Quavers/ Curls are just my absolute faves so I have NP whatsoever eating them (or Cheddars) in favour of actual crisps, although I can eat more or less whatever I want cos I dose adjust.


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## LeeLee

The lowest carb savoury snacks that I've found are Sainsbury 6-packs of flavoured popcorn (salt/vinegar, paprika and cream cheese).  They all come in under 6g per bag.


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## MelanieG

trophywench said:


> LOL at the Stannah Stairlifts Tina !
> 
> My mate love her mum's stairlift - she used to say it was really useful taking piles of ironing upstairs or sending her suitcase down when she was going on holiday!  She was gutted after mum died and the council came and reclaimed it!
> 
> Melanie the bit I want to pick up on is this
> 
> and as he likes his crisps, I read that skips/quavers were better.
> 
> You need to start reading labels Mum!  The back of almost very packet/tin of anything has the nutritional info on the back in little writing.  The one thing you are really interested in is the Carbohydrate content.  Ignore the 'of which sugars' - cos sugar is just a carbohydrate same as flour or spud etc.
> 
> So what's in my kitchen?  Per pack - Walkers C & O are 17.1g carb, Mini Cheddars are 12.9g and Tesco's Cheesy Curls are 9.1. (these are like Quavers but in slightly snaller bags and cheaper LOL)   Hula Hoops are actually 15.1 which surprised me cos I thought they were less.  Quavers/ Curls are just my absolute faves so I have NP whatsoever eating them (or Cheddars) in favour of actual crisps, although I can eat more or less whatever I want cos I dose adjust.


Ok lol, I need to learn this fast then, so I'm looking for everything best in low carbs, so if there's something he likes to eat, read all the labels for the lowest it comes in.


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## Tina63

Re crisps - once you get into serious carb counting, just bear in mind bags that come in multipacks tend to be smaller than one off bags you buy, so therefore the carb count will be different.  If you have ever done Weight Watchers, it's just like that, you get to know the value of foods and can just count as you go along.  Slice of bread x amount, crisps y amount, cereal bar z amount - total carbs xyz therefore insulin units = ? You soon the hang of it, it's not half as bad as you think it will be.  Do you have digital kitchen scales?  If not, they are well worth the investment.  

When we started carb counting, I typed a list on my computer which I then laminated and stuck on the kitchen cupboard.  On there I had the carb content of all basic ingredients, flour, rice, pasta etc, then added any regular food we used, ie slice of bread, cream cracker, digestive biscuit, etc, and then any pre-packed food we used on a regular basis.  Things I make myself, like for instance individual Yorkshire puddings, I calculated the carb count of the whole batch so I could then say 2 individual Yorkshires x amount.  Fairy cakes too.  Things like that.  It's just then easier if you don't make something too often not having to always go back and start again with the calculations.

As others have said, all prepacked food has the carb content on.  You just have to make sure you know if it's 'per serving' or 'per 100g'.  That's where the scales come in useful.  Also rice and pasta, when cooked they tend to triple in weight, so as long as you know what portion you have allowed for your son, weigh it directly onto his plate as you serve it up.  It soon becomes second nature.  If he eats cereals weigh them directly into his bowl.  We were told to avoid any cereals where the 'of which sugars' was higher than a third of the total carb content.

Also over the drinks, beware of the acid in fizzy drinks.  My lad is addicted (and I really mean that) to Pepsi Max (sugar free) but his tooth enamel is already wearing thin according to the dentist. He has backed off it a lot, but it's scary that only 2 years of drinking that, and I grant you he has drunk loads of it, but the damage is there to be seen in such a short time.  I am hoping he has heeded what the dentist told him.  He has definitely cut back.  If your lad will drink water, or tea or coffee, or the no added squash, it is preferable for everyday drinking rather than the fizzy stuff.  It's fine for occasional treats, but just beware of the impact on his teeth if it becomes a regular 'fix'.  

When are you next seeing anyone?  Do you get home visits or do you have to keep going back to the hospital?  We had fantastic care at the start, home visits and phone calls regularly, both our DSN and the dietician, plus really regular hospital appointments.  There is so much to take in though, each time they would come with a few more A4 sheets to talk us through and leave with us.  I very quickly got a ring binder and filed it all so I had a little reference manual building up!  There is so much to learn, but I am still learning now.  I have learnt so much more from here, it's so informative, learning from people who are living with it day in, day out.  It's invaluable support.

You are doing really well.  Keep it up.  Happy Easter.
Tina


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## Northerner

Something that many people find very useful, particularly when eating out, is the Carbs & Cals book - pictures of many popular meals in different portion sizes with their associated carb values


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## MelanieG

Ok great thank you everyone, lots to take in, I will get a ring binder and file all of the leaflets and letters in it so that I have it all stored in one place.
The nurse is visiting us at home again on Tuesday, so much to ask her now after all of your great advice!
She did lend us  that carbs book last time she came, but as we had no advice on what carb levels were aiming to achieve, and not having yet seen a dietitian, it was hard to make sense of it all. 
Tom likes water, the reduced sugar squash too, but is missing drinking hot chocolate and had a strop with me last week over that.
The great news is last night he did his own finger prick ( big long build up and lots of moaning) but he did that bit for himself, so we've made slight progress at least
Happy Easter all x


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## LeeLee

Cadbury Highlights or the own label equivalents are my bedtime treat.  Made exactly as directed (and I do weigh out the 11g) the carb count is only 5.4g.  The Fudge one is my favourite.


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## MelanieG

See I've been wrapped up in looking at the sugar bit not all the carbs and getting confused, and now I'm realising what I should be looking at  great news for Tom. Thanks


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## Tina63

MelanieG said:


> The great news is last night he did his own finger prick ( big long build up and lots of moaning) but he did that bit for himself, so we've made slight progress at least



That's fantastic news.  Well done Tom.  Little steps eh?  Just remember, Rome wasn't built in a day.  Every little step is progress.  Onwards and upwards!


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## Pumper_Sue

LeeLee said:


> Cadbury Highlights or the own label equivalents are my bedtime treat.  Made exactly as directed (and I do weigh out the 11g) the carb count is only 5.4g.  The Fudge one is my favourite.



It's all very well saying it's only, you have to remember someone with type 1 diabetes will need to cover this with insulin.

Bottom line is though Tom can eat what he did before diabetes reared it's ugly head. He just has to learn to count carbs and cover it with insulin. Obviously avoiding full fay fizzy drinks and gorging on sweets is a no no, but then that applies to anyone with a sensible diet.

Well done Tom for managing the finger test.
I hate the pokers and refuse to use them, found out a long time ago it easier and quicker to just poke finger with lancet


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## Lauras87

MelanieG said:


> The great news is last night he did his own finger prick ( big long build up and lots of moaning) but he did that bit for himself, so we've made slight progress at least



Yay!!!! Well done Tom.
You must be happier Melanie that he managed to do part of his diabetes care for himself, hopefully the rest will follow soon


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## trophywench

Finger pricking - try and get an Accu-Chek Multiclix finger bodger - the lancets are sheathed so you never actually see the pointy bit, plus it's by far the comfiest device I've had since they invented Glucometers (we had to boil up pee before that !)  

And Tom might like to read this article, part of Alan Shanley's Blog  (he's a T2 and not on insulin, but a finger prick is a finger prick for all types)

http://loraldiabetes.blogspot.co.uk/search?q=painless+pricks


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## Monica

Northerner said:


> The device I was thinking about so he doesn't need to see the needle is the Novofine Autocover, there's a video here:
> 
> http://www.youtube.com/watch?v=qpfJTM8JvZE
> 
> Of course, it would be much better if he didn't need to use these, but you might like to talk to your team about them - they should be available on prescription



Hi Melanie and welcome

I've only just seen this, as we've been on holiday during Easter.
My daughter Carol was diagnosed 12 March 2007 aged 10. She hated the injections and to make matters worse, we started off with syringes. Only after 3 months it got changed to pens. I can vouch for the Autocover needles, despite being 8mm instead of 4mm. Carol used to have 6mm needles, as the 4mm ones didn't exist in those days. She preferred the Autocover 8mm to having to see the 6mm needles. Unfortunately, it took 2 years before the DSN even suggested the Autocover to us. But after that it took Carol about 3 months before she could bring herself to do it. This was also around the time before she was supposed to go on a residential with year 8 and I told her that she wouldn't be able to go if she didn't inject herself. What I didn't tell her was that school staff were prepared to do it, as I didn't think she'd let staff do it. I was the only one allowed. That summer holiday before the trip she managed it 
I hope your boy will be able to get used to it soon, but don't be cross if he doesn't.

Carol is now on the pump, but I believe that if she should have to inject, she'd still need the Autocover


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## Lauras87

When I went for my prescription review I saw the auto covers to be prescribed.

Might be worth asking your DSN for them & having them put on your repeat?


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## MelanieG

Thank you everyone, I mentioned it to the nurse and she said she didn't know about them, and that she will look into it.
I've been trying with him all over Easter and he goes so clammy he can't hold the pen  next week school starts back, and it looks as if I'll be going in to inject him every lunchtime, which plays havoc with my job, but we have to make the best of it. He's trying bless him, but I just can't see him doing it.
Toms had some very emotional moments too, can be very happy one moment, and very angry and upset the next. He says he wants it gone, he's had enough. It's so hard to know how to bring him out of it.


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## Pumper_Sue

MelanieG said:


> Thank you everyone, I mentioned it to the nurse and she said she didn't know about them, and that she will look into it.
> I've been trying with him all over Easter and he goes so clammy he can't hold the pen  next week school starts back, and it looks as if I'll be going in to inject him every lunchtime, which plays havoc with my job, but we have to make the best of it. He's trying bless him, but I just can't see him doing it.
> Toms had some very emotional moments too, can be very happy one moment, and very angry and upset the next. He says he wants it gone, he's had enough. It's so hard to know how to bring him out of it.



Hi Melanie,
             sorry to hear Tom is still having problems with needles.
His Mood swings are due to his blood sugars being unstable once they are better hopefully things will improve.
Have a look on line regarding the needle cover you should then be able to find the correct code to allow a prescription to be issued or even ring the company and ask them what it is.
Then go along to your GP and ask that they are put on prescription for Tom.


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## Lauras87

mel.

i think i have found the code you need its 08290-3293-05 for 5mm needles


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## Adrienne

Hi Melanie

Sorry to hear about your son's diagnosis.   My daughter was 13 years old last week and has had t1 for 13 years, since she was a few weeks old.   

Happy to help with anything.    Carbs and cals is fab.    As well as the Ragnar Hanus book it is worth buying 'Think like a Pancreas' by Gary Scheiner.   I've actually met him (as have others) and he is fabulous and the book is great, think there is an updated version out of both of those books.

The carbs and cals you can get on your phones, we only use the apps now and not the book.

One of the best things to happen is for your son to meet other children around the same age with t1.   It really is one of the most eye opening moments for them, as they see others have it and can cope and how they cope and what they do and that they are not alone and can be normal.   That is one of the biggest things.    Where abouts in Hertfordshire are you?    

I can ask on the CWD email list and see if there are others in your area or any support groups and ask your DSN as well


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## Redkite

MelanieG said:


> Hi everyone, I'm new on here, and new to diabetes.
> Last week my eldest son (13) was diagnosed type 1, and we are all still in shock, and trying to get our heads around this new way of life.
> He is so scared of the needles, and worried about what is happening to him, and I'm doing my best to understand what diabetes is and how we cope.
> Any help would be great as its all so scary at the moment and I need to see my son smile again.
> Thank you
> Mel
> Mum to Thomas age 13, Elliot 10, and Lucas 5.


Hi Mel,

Sorry to hear about your son's diagnosis, it must be a very hard time for you all.  My son was 4 at diagnosis and I have a horrid memory of him screaming and crying and begging me to hide him from the nurse who wanted to give him his injection.  The fear and anticipation is much worse than the pain though!

Have you been given a Penmate device to use with his insulin pen?  This is great for people who don't want to look at the needle or physically push it through their skin.  You replace the bottom part of the insulin pen with the Penmate, then dial up insulin in the usual way and pull up the Penmate to hide the needle (it's springloaded).  Place it against your skin and press a button to fire the needle through the skin, then push the dialled insulin through.

Another alternative which my son used for a couple of years is Insuflon catheters (available from your hospital children's ward, not on prescription).  This is a Teflon cannula which is inserted into the skin using an introducer needle which is then withdrawn (can use emla cream first for painless insertion).  The cannula can stay in place for 5-7 days, and all short-acting insulin injections can be injected through this, rather than piercing the skin.  Basal insulin still has to be injected separately so the two don't mix in the cannula.  But this means you are down to just one injection per day (the basal insulin), plus one catheter every few days.  It also meant for us that we could really fine tune my son's diabetes, because he could painlessly have injections to correct high BG levels, injections for between-meal snacks, and split injections for meals like pasta that take a long time to digest.  He was having around 7 injections a day and getting much better control, but painlessly.

Hope this helps!


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## MelanieG

Adrienne said:


> Hi Melanie
> 
> Sorry to hear about your son's diagnosis.   My daughter was 13 years old last week and has had t1 for 13 years, since she was a few weeks old.
> 
> Happy to help with anything.    Carbs and cals is fab.    As well as the Ragnar Hanus book it is worth buying 'Think like a Pancreas' by Gary Scheiner.   I've actually met him (as have others) and he is fabulous and the book is great, think there is an updated version out of both of those books.
> 
> The carbs and cals you can get on your phones, we only use the apps now and not the book.
> 
> One of the best things to happen is for your son to meet other children around the same age with t1.   It really is one of the most eye opening moments for them, as they see others have it and can cope and how they cope and what they do and that they are not alone and can be normal.   That is one of the biggest things.    Where abouts in Hertfordshire are you?
> 
> I can ask on the CWD email list and see if there are others in your area or any support groups and ask your DSN as well



Hi adrienne,

Thank you for your advice, it's so nice to hear from other parents who are going through the same. I have now got the carbs and cals app and it is good, and is helping me understand. So I think we're ready to dose his insulin ourselves instead of the nurse setting amounts, as he's suffering lots of hypo's at he moment.
We are in Stevenage Hertfordshire so it would be great for him to meet others going through what he is.


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## MelanieG

Redkite said:


> Hi Mel,
> 
> Sorry to hear about your son's diagnosis, it must be a very hard time for you all.  My son was 4 at diagnosis and I have a horrid memory of him screaming and crying and begging me to hide him from the nurse who wanted to give him his injection.  The fear and anticipation is much worse than the pain though!
> 
> Have you been given a Penmate device to use with his insulin pen?  This is great for people who don't want to look at the needle or physically push it through their skin.  You replace the bottom part of the insulin pen with the Penmate, then dial up insulin in the usual way and pull up the Penmate to hide the needle (it's springloaded).  Place it against your skin and press a button to fire the needle through the skin, then push the dialled insulin through.
> 
> Another alternative which my son used for a couple of years is Insuflon catheters (available from your hospital children's ward, not on prescription).  This is a Teflon cannula which is inserted into the skin using an introducer needle which is then withdrawn (can use emla cream first for painless insertion).  The cannula can stay in place for 5-7 days, and all short-acting insulin injections can be injected through this, rather than piercing the skin.  Basal insulin still has to be injected separately so the two don't mix in the cannula.  But this means you are down to just one injection per day (the basal insulin), plus one catheter every few days.  It also meant for us that we could really fine tune my son's diabetes, because he could painlessly have injections to correct high BG levels, injections for between-meal snacks, and split injections for meals like pasta that take a long time to digest.  He was having around 7 injections a day and getting much better control, but painlessly.
> 
> Hope this helps!



Thank you redkite, 
People have mentioned these, and so I told our nurse, who said she had never heard of them, but she is looking into it for us, and also the possibility of a pump.great advice, thank you x


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## CaroleB

*hi from Letchworth*

Hi Melanie i am so sorry to hear of your sons diagnosis, its a hard time for all of you. my daughter was diagnosed a year ago.  some days it still feels unreal and other days as if its always been here.  

i am happy to meet or chat on the phone, i saw you said he doesn't know anyone else with type 1, my daughter is 8 but i do know a few others in the area with older children if you would be interested in meeting.  they are a great bunch.  

take care of yourself


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## Adrienne

MelanieG said:


> Hi adrienne,
> 
> Thank you for your advice, it's so nice to hear from other parents who are going through the same. I have now got the carbs and cals app and it is good, and is helping me understand. So I think we're ready to dose his insulin ourselves instead of the nurse setting amounts, as he's suffering lots of hypo's at he moment.
> We are in Stevenage Hertfordshire so it would be great for him to meet others going through what he is.



Hiya

So I asked on the CWD email list and there are lots of people who live near there who would love to meet you and your son.  Many have slightly young children.  One mum says she has set up a group you can go along to.  I've just had an email from a mum who is in Brookmans Park (about 30 mins from you) who has a 15 year old lad and they would love to meet up with you and chat and offer any support or whatever you need.    How lovely is that.   

How do you want to do that.   They would be happy for me to give you their emails no doubt if that is a good idea or I can give them your email address.   Let me know, feel free to pm me if you like.

Adrienne x


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## MelanieG

Adrienne said:


> Hiya
> So I asked on the CWD email list and there are lots of people who live near there who would love to meet you and your son.  Many have slightly young children.  One mum says she has set up a group you can go along to.  I've just had an email from a mum who is in Brookmans Park (about 30 mins from you) who has a 15 year old lad and they would love to meet up with you and chat and offer any support or whatever you need.    How lovely is that.
> 
> How do you want to do that.   They would be happy for me to give you their emails no doubt if that is a good idea or I can give them your email address.   Let me know, feel free to pm me if you like.
> 
> Adrienne x


That sounds great, Tom is very worried about telling friends or anyone really about his diabetes, and so I keep saying it would be good to meet other children who are going through the same thing. He is very shy bless him. I would love to be able to email and talk with these parents and hopefully meet. It is all so new to us.how do I pm you my email? Thanks so much.


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## Adrienne

Right even better but only if you are on fb of course.  Are you on facebook?

I don't know if you are aware, probably not as you are new to this, the face of paediatric diabetes in England is changing massively for the better.  The country has been divided up into 9 areas.   Luckily you are under the East of England.   Each area has a co-ordinator (yours is Kate Wilson) and a couple of parent reps and they sit on a network panel which is comprised of consultants, DSN's NHS and parents etc and then they all feed into a main national network.

Well the EofE area is the most proactive.  I have many very good friends who are park of the fantastic organisation.   They have a fb page and have just literally done a can for your son's age children all with night testing and some d mums and dads as the carers etc.   It sounded fantastic.   

So you need to join that group, but I can do that for you but only if you are on fb.

My email is adrienne@atburton.plus.com   (Northerner I have no idea if I am allowed to put that here but it is easily found on the web anyway due to running a charity etc etc).   

Feel free to email me Melanie and I can get the ball rolling.   You will feel much better once you meet some people.  I absolutely guarantee that as finally you will know other people who 'get it'.   That is so important.

xx


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## Adrienne

MelanieG said:


> That sounds great, Tom is very worried about telling friends or anyone really about his diabetes, and so I keep saying it would be good to meet other children who are going through the same thing. He is very shy bless him. I would love to be able to email and talk with these parents and hopefully meet. It is all so new to us.how do I pm you my email? Thanks so much.



My daughter is 13 and we would both also love to meet you.   13 is a tough age to get d, there are lots that are shy and so to meet others is a bonus xx


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## Adrienne

MelanieG said:


> That sounds great, Tom is very worried about telling friends or anyone really about his diabetes, and so I keep saying it would be good to meet other children who are going through the same thing. He is very shy bless him. I would love to be able to email and talk with these parents and hopefully meet. It is all so new to us.how do I pm you my email? Thanks so much.



Hiya Melanie

Hope all ok.   I found lots of people in your area who would happily meet up and chat with you and Tom or just you, whatever you want.   I haven't heard from you though.  If you don't want to its absolutely no problem and no pressure but it sounded like you did so thought I would post another message.

Let me know and hope all ok 

xx


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