# My son just been diagnosed with type 1



## Dylans mom (Dec 26, 2019)

Hi there last Friday my son was nearly in a diabetic coma and we had no clue he was diagnosed straight away with type 1. He was in hospital til Christmas eve very very poorly.  We are home but last night he broke my heart saying he doesn't know how he is going to cope and started crying. Hes only 13 and we are all finding it so stressful and he hasn't even gone back to school yet. Any help i would be grateful


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## DebbieC (Dec 26, 2019)

Dylans mom said:


> Hi there last Friday my son was nearly in a diabetic coma and we had no clue he was diagnosed straight away with type 1. He was in hospital til Christmas eve very very poorly.  We are home but last night he broke my heart saying he doesn't know how he is going to cope and started crying. Hes only 13 and we are all finding it so stressful and he hasn't even gone back to school yet. Any help i would be grateful


Hi so sorry to hear you’ve had a rough time , I don’t know much about T1 but I am mum to a 32 year old son with autism who was diagnosed T2 in September and my friend has a son who was diagnosed T1 at 16 several years ago. You will get lots of help on here and it will all be ok... my son is in remission and my friends son is living life to the full with a pump and other technology.. it’s so hard as a mum but honestly it will all be ok given time.. big hug xx


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## MrDaibetes (Dec 26, 2019)

Hey & welcome to the forum. I know it can be difficult especially at this time of year. If you have any questions feel free to ask them.


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## SB2015 (Dec 26, 2019)

Welcome to the forum @Dylans mom 

So sorry to hear of your son’s diagnosis, and how upset he is about this.
It really is hard at the start, and made more difficult at this time of year.
Please reassure him that it is manageable and does not need to prevent him doing anything.  
Things just need a bit more organising and planning.  At the start there is so much to learn, but this quickly becomes part of his new ‘normal’ life.

There are plenty of people who live with this and do amazing things.  
One of my champions is Henry Slade.  Lives with T1, plays rugby for England.

Keep in touch and ask absolutely any questions that you have.

Dylan, it is difficult but it will get easier, even if it doesn’t feel like it at the moment.


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## Thebearcametoo (Dec 26, 2019)

Hi and welcome. It’s hard coming to terms with a diagnosis but especially so close to Christmas. The diabetes team should be able to support him through this but there will be times where it all feels too much and it’s good that he can share those emotions with you. We found the first few weeks overwhelming (and my daughter was pretty well when she was diagnosed so we didn’t have to process lots of emotion about how ill she’d been). We’re here to listen to you. To answer questions and just generally to support you as you support your son.


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## Dylans mom (Dec 26, 2019)

DebbieC said:


> Hi so sorry to hear you’ve had a rough time , I don’t know much about T1 but I am mum to a 32 year old son with autism who was diagnosed T2 in September and my friend has a son who was diagnosed T1 at 16 several years ago. You will get lots of help on here and it will all be ok... my son is in remission and my friends son is living life to the full with a pump and other technology.. it’s so hard as a mum but honestly it will all be ok given time.. big hug xx


Thank you so much xx


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## Dylans mom (Dec 26, 2019)

MrDaibetes said:


> Hey & welcome to the forum. I know it can be difficult especially at this time of year. If you have any questions feel free to ask them.


Thank you


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## Dylans mom (Dec 26, 2019)

SB2015 said:


> Welcome to the forum @Dylans mom
> 
> So sorry to hear of your son’s diagnosis, and how upset he is about this.
> It really is hard at the start, and made more difficult at this time of year.
> ...


Thank you


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## Dylans mom (Dec 26, 2019)

Thebearcametoo said:


> Hi and welcome. It’s hard coming to terms with a diagnosis but especially so close to Christmas. The diabetes team should be able to support him through this but there will be times where it all feels too much and it’s good that he can share those emotions with you. We found the first few weeks overwhelming (and my daughter was pretty well when she was diagnosed so we didn’t have to process lots of emotion about how ill she’d been). We’re here to listen to you. To answer questions and just generally to support you as you support your son.


Thank you very much


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## Pumper_Sue (Dec 26, 2019)

Hello Dylan and Mum as well.
It's a bummer being diagnosed at Christmas or Easter as a youngster. Your whole world tends to cave in with thoughts of no more Christmas goodies or Easter eggs thanks to silly comments from people who know no better.

The good thing though Dylan that in this day and age we can eat what we please as long as we account for it by injecting the corresponding dose of insulin.

Being diagnosed as a teenager is going to be a bit of a struggle due to hormones and growth spurts so your numbers will go up and down a fair bit (feel sorry for the yoyo)

The best advice I can give you and your Mum is to take one day at a time and treat your blood sugar numbers as just a number that needs to be corrected if to high or low. No one ever has perfect numbers main reason being we are not machines 

Having diabetes wont stop you from doing anything in life you want to do.
Hopefully you will soon be feeling better and can enjoy your Christmas presents and start to feel a bit more positive.


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## Dylans mom (Dec 26, 2019)

Thank you for replying , I know its gonna take a while there is so much to learn and I cant get my head around it all, luckily my husband understand but when he goes back to work I'm dreading it and also once he goes back to school x


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## Pumper_Sue (Dec 26, 2019)

Dylans mom said:


> Thank you for replying , I know its gonna take a while there is so much to learn and I cant get my head around it all, luckily my husband understand but when he goes back to work I'm dreading it and also once he goes back to school x



Rome wasn't built in a day, so take one day at a time. As a Mum you will always worry, My Mum still worries about me and I've been type 1 for almost 55 years and Mum is 83.

The best bit of advice I can give you is, to always remember it's Dylan's condition so involve him in everything, hospital apts talking to the nurses, carb counting food choices insulin dosage and never ever be afraid to ask questions or ask for help.


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## Bruce Stephens (Dec 26, 2019)

I think "Type 1 diabetes in Children, Adolescents and Young Adults" by Ragnar Hanas is recommended by many.

While the diagnosis is always going to be a shock, at some level you should be a bit reassured that you're not alone, and (though it may be hard to believe now) it's very likely you will all cope, since so many others have.


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## Dylans mom (Dec 26, 2019)

Oh yes we will  definitely involve him in all of it as he needs to know more than me x


Pumper_Sue said:


> Rome wasn't built in a day, so take one day at a time. As a Mum you will always worry, My Mum still worries about me and I've been type 1 for almost 55 years and Mum is 83.
> 
> The best bit of advice I can give you is, to always remember it's Dylan's condition so involve him in everything, hospital apts talking to the nurses, carb counting food choices insulin dosage and never ever be afraid to ask questions or ask for help.


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## Dylans mom (Dec 26, 2019)

Bruce Stephens said:


> I think "Type 1 diabetes in Children, Adolescents and Young Adults" by Ragnar Hanas is recommended by many.
> 
> While the diagnosis is always going to be a shock, at some level you should be a bit reassured that you're not alone, and (though it may be hard to believe now) it's very likely you will all cope, since so many others have.


Thank you


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## everydayupsanddowns (Dec 27, 2019)

Welcome to the forum Dylan’s Mum

So sorry to hear about your son’s diagnosis, but in some ways there has never been a better time in history to get this news(!). Modern treatment techniques and technologies make it more possible than ever to do whatever you want to do alongside T1 (from sports and being in a rock band to flying commercial airliners!) and these days you can eat well and enjoy life to the full 

Must not without a few frustrations and wobbles, but I fully expect your young lad to become a T1 superhero!

https://www.t1resources.uk/resources/item/type-1-origins-revolve-comics/


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## Docb (Dec 27, 2019)

Hi Dylan's Mum.  No experience to help you but amongst all the other things you are trying to sort out, it seems to me that it might be worth getting in touch with the school  before they go back to make sure that they have things in place to help him to take the pressure off.


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## trophywench (Dec 27, 2019)

Oh yes - the school!  They are obliged these days to make proper arrangements for their 'differently abled' kids.  Things like allowing him to at least test his blood glucose in class, eat glucose (by whatever means he chooses) in class so he can treat any hypos properly, somewhere properly clean to jab before lunch, never leave him on his own if his BG is too low for safety, and YES! they will have to learn how!

Diabetes UK produce an info pack for schools AND have an Advocacy service if YOU need help.  Chances are they will already have at LEAST one if not more, other students with Type 1 - so let's hope they do.  First thing you need to do is find out about that.  Get in touch with the school secretary as soon as poss in the New Year,


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## Dylans mom (Dec 27, 2019)

everydayupsanddowns said:


> Welcome to the forum Dylan’s Mum
> 
> So sorry to hear about your son’s diagnosis, but in some ways there has never been a better time in history to get this news(!). Modern treatment techniques and technologies make it more possible than ever to do whatever you want to do alongside T1 (from sports and being in a rock band to flying commercial airliners!) and these days you can eat well and enjoy life to the full
> 
> ...


Thank u


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## Dylans mom (Dec 27, 2019)

Docb said:


> Hi Dylan's Mum.  No experience to help you but amongst all the other things you are trying to sort out, it seems to me that it might be worth getting in touch with the school  before they go back to make sure that they have things in place to help him to take the pressure off.


The diabetes team are coming to the school with me thank u


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## Dylans mom (Dec 27, 2019)

trophywench said:


> Oh yes - the school!  They are obliged these days to make proper arrangements for their 'differently abled' kids.  Things like allowing him to at least test his blood glucose in class, eat glucose (by whatever means he chooses) in class so he can treat any hypos properly, somewhere properly clean to jab before lunch, never leave him on his own if his BG is too low for safety, and YES! they will have to learn how!
> 
> Diabetes UK produce an info pack for schools AND have an Advocacy service if YOU need help.  Chances are they will already have at LEAST one if not more, other students with Type 1 - so let's hope they do.  First thing you need to do is find out about that.  Get in touch with the school secretary as soon as poss in the New Year,


The diabetes team are going to come to the school with me to sort everything out for him thankfully. I think they said he was the 4th child in the school so I'm hoping he may make friends so he has someone to talk to


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## SB2015 (Dec 28, 2019)

Glad to hear that your team are going to the school with you.
As they already have others with T1 in the school, they will have appropriate plans in place.

It is important that Dylan is able to manage his diabetes how he feels comfortable.  This may change as time goes on.  I was teaching when I was diagnosed and at first I took up the offer of an office in which to test and jab before lunch, however I then switched to just getting on with it in the canteen.

It is important that he is not expected to leave the classroom to deal with hypos.  He needs to have his kit with him and as @trophywench said he needs to be able to test and treat in situ. 

Has he spoken to any of his friends about his diagnosis yet?  It will be good if at least a few others that he is with know what is giong on, so that if he has a hypo between lessons someone  can stay with him.

I am going to tag @Sally71 who has a daughter in secondary school who may be able to offer some tips.

A lot to take on board, but it sounds like you have a good Diabetes team. If you have any worries just ask.  That is why they are there.


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## EmilyCox76 (Dec 28, 2019)

Hi Dylan’s mum, I’m Emily my 8 year old daughter was diagnosed type 1 in November. I know exactly what you’re going through , it sucks!! Expect to cry lots then have amazing moments of pride when you see how well he is coping with it all and he will wow you I promise, I just keep thinking we could have had worse news. In no time, this will be normal to you both and hopefully the school will be amazing, keep smiling you’re not alone you’ll be amazed how quickly he’ll get use to it x


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## SB2015 (Dec 28, 2019)

Welcome to the forum @EmilyCox76 , glad to hear how well 
you and your daughter have adapted to managing T1.  
A reassurance for Dylan and Mum.


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## Dylans mom (Dec 28, 2019)

EmilyCox76 said:


> Hi Dylan’s mum, I’m Emily my 8 year old daughter was diagnosed type 1 in November. I know exactly what you’re going through , it sucks!! Expect to cry lots then have amazing moments of pride when you see how well he is coping with it all and he will wow you I promise, I just keep thinking we could have had worse news. In no time, this will be normal to you both and hopefully the school will be amazing, keep smiling you’re not alone you’ll be amazed how quickly he’ll get use to it x


Hi Emily so sorry about your daughter's diagnosis,  I am crying lots just feel useless I want to take it all away from him . Hes so worried about going back to school and being different. How did your daughter cope x


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## Dylans mom (Dec 28, 2019)

SB2015 said:


> Glad to hear that your team are going to the school with you.
> As they already have others with T1 in the school, they will have appropriate plans in place.
> 
> It is important that Dylan is able to manage his diabetes how he feels comfortable.  This may change as time goes on.  I was teaching when I was diagnosed and at first I took up the offer of an office in which to test and jab before lunch, however I then switched to just getting on with it in the canteen.
> ...


He hasn't told anyone yet and to be honest he doesn't really like anyone at school certainly no one to tell this too. I just hope all will go ok for him


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## EmilyCox76 (Dec 28, 2019)

Dylans mom said:


> Hi Emily so sorry about your daughter's diagnosis,  I am crying lots just feel useless I want to take it all away from him . Hes so worried about going back to school and being different. How did your daughter cope x


Me too just reading that made me tear up! It’s so damn unfair, honestly maybe because she’s younger but had a meeting with the school and diabetes team and it didn’t bother her she has a medical lady who checks on her all the time and has adapted really well after a couple of weeks I’m sure your son will too. Remember it’s ok to make mistakes too! The sadness that they have this I don’t think will ever go away but it will be part of a happy life that. Maisie often says it’s not fair why have I got this then the next minute she’s bouncing around the lounge, you could go into school when he’s due his checks at first or he might want to do it alone at that age I think his peers and friends will be interested in it as not many people know much about it. Tell him to tell his friends his hypo signs and his friends will feel like they’re looking out for him, Maisie’s friends watch for her going pale they feel involved, best of luck and so sorry for him and you take care x


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## Dylans mom (Dec 28, 2019)

The team are coming into his school with us but to be honest he doesn't like anyone at school and no one he wants to know about this. Doesnt help that its Christmas and he cant eat his chocolate like a pig x


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## SB2015 (Dec 28, 2019)

How does he get on with his tutor?  It might be worth talking with them as well, which might happen with the specialist nurse anyway.  Be honest with the specialist nurse about how he feels and about your worries.  They will have managed many different situations in schools, and will have strategies to deal with them.  It is also good to know that the school is already used to helping students with T1.

Keep in touch and ask any questions that you have.


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## Dylans mom (Dec 30, 2019)

SB2015 said:


> How does he get on with his tutor?  It might be worth talking with them as well, which might happen with the specialist nurse anyway.  Be honest with the specialist nurse about how he feels and about your worries.  They will have managed many different situations in schools, and will have strategies to deal with them.  It is also good to know that the school is already used to helping students with T1.
> 
> Keep in touch and ask any questions that you have.


Thank you I'm waiting to see when we can have an appointment and the team are getting in touch with psychologist for him. He is so worried about school and how the children are going to be with him


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## Bexlee (Dec 30, 2019)

I’m sure it’ll all be ok at school. I know it’s difficult and he’ll be very nervous but I bet no one actually notices when he finger pricks - they don’t often in my school and I have 3 children in one particular class (and me!) we make it a bit of a competition between us. If anything the children who do notice are curious and want to know what to look out for and how they can help. 

It isn’t a special need as such but the school should have a senco who is responsible for medical plans and the like. He / she should be able to assist with what Dylan wants - ultimately it is about Dylan and his wants and needs not what the school want to make life easy for them so to speak. 

He shouldn’t be made to do things in isolation but injections need to be in clean place where he won’t get bumped as he’s doing them. Could he go to his tutor base or a Head of years office or a pastoral office or even the reception lady? 

 We have a combination of all with children in my school. They all like to do things differently. 

I as a grown up member of staff had a bit of a battle about things with my old head (we have a new one who has been outstandingly fantastic) which made me feel terrible and upset and tried to keep things quiet and not tell people for 3 years but with support of a few colleagues and friends who once they realised we’re curious about diabetes and what they could do to help we’ve really got things worked out for the kids and me. 

His form tutor may be a good place to start

Also JDRF do lots of leaflets if you haven’t already found them......and a kids pack with a Rufus bear - no kids to old for a teddy!


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## Dylans mom (Dec 30, 2019)

Bexlee said:


> I’m sure it’ll all be ok at school. I know it’s difficult and he’ll be very nervous but I bet no one actually notices when he finger pricks - they don’t often in my school and I have 3 children in one particular class (and me!) we make it a bit of a competition between us. If anything the children who do notice are curious and want to know what to look out for and how they can help.
> 
> It isn’t a special need as such but the school should have a senco who is responsible for medical plans and the like. He / she should be able to assist with what Dylan wants - ultimately it is about Dylan and his wants and needs not what the school want to make life easy for them so to speak.
> 
> ...


We have a rufus bear lol and got loads of leaflets and books, I'm waiting to have a meeting with the school and see what they will do to help him. Hopefully all will go well


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## Sally71 (Dec 30, 2019)

Hope your meeting with the school goes well. It's important to get a care plan in place and make sure that all staff who will have anything to do with your son have read it. My daughter is also 13 but was diagnosed 7 years ago so we have already have had plenty of practice arguing with school staff about it, in our case though i think secondary school has actually been easier than primary school was.  Things to ask for at your meeting are:
Toilet pass - if blood sugars are very high they need to wee a lot so a toilet pass can prevent a lot of discomfort in that situation, hopefully won't be needed very often but useful to have.
Medical pass - to get them out of the classroom and to medical assistance whenever needed. They shouldn't be forced to leave the room to deal with a hypo, but should be allowed to get medical help whenever they need it. My daughter actually prefers to go to the medical room if she's low, but that's her choice.
Make sure all staff understand that your son MUST keep test equipment and hypo treatments within reach at all times, whether that means being allowed to keep his whole school bag in the room with him at all times, or whether he prefers to carry a smaller medical bag separately. We had a couple of issues initially with certain teachers insisting all bags be left outside the classroom to avoid clutter inside, and for PE everything had to be left in a locked building while they were outside!  But once I’d pointed out why this is a problem it all got sorted, all the staff who deal with my daughter are now aware who she is and why she must keep her bag with her at all times.
Lunch time procedure - my daughter has a pass to leave the last morning lesson a few minutes early so that she can go to the medical room and do her insulin, and then go straight to the dining hall so that she doesn’t have to wait. She also has a queue jump pass just in case she gets stuck at the back of a long line, she can go to the front. We are very lucky in that the school cook emails me the menu every week, I email back her choices and then they make sure that she always gets what she has chosen. They said they couldn't help me with carb counting the food, but one of the dieticians at our hospital managed to get me a list of their foods with carb counts!  So that's what we use and the cook always reserves whatever she has chosen so that she knows how much insulin she needs. I don't think many schools do that but hopefully you will be able to agree a system that you and your son can work with.

Good luck, you are probably still in shock at the moment but it does get easier, honest! If you can get things worked out with the school then that will help loads.  And don't be afraid to keep asking questions


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