# Out of the blue diagnosis -  14 year old daughter-struggling



## Saffyd76 (Aug 8, 2019)

hi everyone, 

I found the group whilst trying to sleep at the hospital with my daughter (14 one of a non identical twin) who was diagnosed today after a blood test taken at 11am at the doctors with no mention of diabetes at all, (we thought she could have irritable bowel after months of bloating, tiredness, drinking more, going to the loo more often) we had a terrifying call from the doctors at 3pm asking us to go straight to the hospital or GP - her blood sugar level was 37- I/we are really overwhelmed and we are all struggling tonight, not sure if it’s a ‘normal’ response - there is just so much to consider and take on board; we are meeting with the diabetic nurse tomorrow - this evening my daughter had her first insulin injection (she was brave enough to do it herself under the nurses guidance) - I have so many questions and concerns - I am worried I am being overly dramatic but she is really tearful and stressed - I know we will adapt but would be grateful for any advice and reassurances that our response to diagnosis is normal. 
Thanks in advance, Saffy


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## Drummer (Aug 8, 2019)

Your reaction is normal - from what I have read - but how fortunate that your daughter has already reached her teens, seems to be doing well with doing her own injection, and should be able to manage her insulin herself quite quickly if that is anything to go by.
Has no one reassured her (and yourself) that she will soon be feeling a lot better now that the insulin her body needs is being provided?
It will soon be a new day - and I do hope that it will bring more reassurance, and perhaps information about the devices which are available these days to help manage type one. 
There are monitors which can be linked to phones so that blood glucose levels are known, trends seen, even alarms given, and pumps which are set to provide the insulin as required - they are not as yet self programming - but your daughter should see advances in the technology and techniques of treatment as she grows up. 
I''d better go to bed - I leave you and your family with my best wishes for the future.


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## Kaylz (Aug 8, 2019)

Hi and welcome to the forum  Sorry to hear of your daughters diagnosis 

I was in the same position as your daughter (albeit at a week before my 25th) almost 3 years ago, I'd had a raised finger prick at the nurse that morning went off to work experience for the day with instructions to come back in the afternoon to see a doctor, I did so and she tested for ketones and that was it, taken to hospital in ambulance and put on a sliding scale, it's terrifying,  I was on a sliding scale and finger pricks every hour but also on my own as my partner went home

Great news that she's taken the first step and done her insulin herself, that was a condition of me being released from hospital so she's taken a massive step

As Drummer has mentioned there are devices now but unfortunately with such a new diagnosis you would probably struggle to get either as there is strict criteria and some have been fighting for a pump for years without success 

Of course you'll both be upset, it can feel like grief of losing someone when your diagnosed and that's exactly how I felt but it will get easier 

Please feel free to ask questions and even have a little rant, we're here for ya

Take care
xx


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## Northerner (Aug 8, 2019)

Saffyd76 said:


> hi everyone,
> 
> I found the group whilst trying to sleep at the hospital with my daughter (14 one of a non identical twin) who was diagnosed today after a blood test taken at 11am at the doctors with no mention of diabetes at all, (we thought she could have irritable bowel after months of bloating, tiredness, drinking more, going to the loo more often) we had a terrifying call from the doctors at 3pm asking us to go straight to the hospital or GP - her blood sugar level was 37- I/we are really overwhelmed and we are all struggling tonight, not sure if it’s a ‘normal’ response - there is just so much to consider and take on board; we are meeting with the diabetic nurse tomorrow - this evening my daughter had her first insulin injection (she was brave enough to do it herself under the nurses guidance) - I have so many questions and concerns - I am worried I am being overly dramatic but she is really tearful and stressed - I know we will adapt but would be grateful for any advice and reassurances that our response to diagnosis is normal.
> Thanks in advance, Saffy


Hi Saffy, welcome to the forum  I'm very sorry to hear about your daughter's diagnosis, Type 1 does tend to hit very quickly  However, don't despair! Although it is a serious condition, the good news is that it is something that can be managed very well and does not have to stop her from achieving  anything she wants to do in life - there are people living with Type 1 in every walk of life you can think of, from ultra-marathon runners to ex Prime Ministers! 

There is a very steep learning curve so try not to become overwhelmed with all the information. If you are ever in doubt about anything, please just ask - either here of your healthcare team. Your daughter was at a similar leve to me at diagnosis (I was 38 mmol/l), although I was diagnosed much later in life, at 49. I've been living with it for 11 years now and although there have been ups and downs I have learned to manage things well, especially with the support and wisdom of the many lovely people on this forum 

What insulin is she being given? I would highly recommend getting hold of a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas, which is an excellent, well-written and informative guide to every aspect of living with Type 1 (in my opinion it should be given to every newly-diagnosed Type 1!). Make sure you get the latest edition, as the methods and treatments for Type 1 are evolving and improving all the time, which is more good news - whilst there's never a good time to be diagnosed, right now is the best time there has ever been and will only improve 

For yourself, you may wish to read Adrienne's essential guide for parents of newly-diagnosed children, written by one of our members whose daughter was diagnosed within hours of birth (she is now a very healthy and accomplished teenager!  )

Please, if you have any questions at all, just ask - nothing is considered 'silly'!  Keep us informaed of how she is getting on


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## SB2015 (Aug 8, 2019)

Good morning @Saffyd76 , the reaction of you all is perfectly normal.  It is a massive shock, but it is manageable, it just may not seem that way whilst you are sat there at the moment.  The Diabetes Specialist Nurses will take you through things step by step, and be available for help at regular intervals.  They are used to getting people u and running, and your daughter will definitely feel better once her glucose levels drop.  Give her a big WELL DONE for doing her first injection.  

@Northerner has already referred you to a book by Ragnar Hanas that I found very useful.  It is worth getting the most recent edition as it is regularly updated with the latest technology, and things are changing and improving so quickly, even in the 12 years since my diagnosis.

Life will be different, but one student I worked with reckoned that having T1 made her a lot more organised, as you just have to plan a bit more carefully.  All the stuff we have to do will become part of the new ‘normal’ life, and there is plenty of help available on here.  If you have any questions just ask.  No questions are considered silly, and we really do get it.


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## Thebearcametoo (Aug 8, 2019)

Hi and welcome. You will have a lot to get your heads round in the next few days and it is a huge shock. It will get easier though and you should get lots of support from your diabetes team. There will be a lot of information to take in but you don’t have to become experts immediately. The same info (and more) will be repeated over the next few months until you’re happy that you can manage the day to day stuff yourselves. She may feel worse as her blood sugar comes down to target range as she’s been used to operating at a high level so take everything gently for the next few days at least. Her emotions will be all over the place not just from the diagnosis but also from her blood glucose levels.


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## Flower (Aug 8, 2019)

Hello and welcome Saffy, glad you've found us 

I'm sorry to hear about your daughter's diagnosis. It is a really steep learning curve and you have to hit the floor running but bit by bit the pieces of the new challenge start to fit in to a new normal . She will be feeling a lot better physically with an insulin supply established after her body has been struggling so much but it is all a great big upheaval and does shake you up mentally and emotionally- daughter and parents. Until you start to get more normal glucose levels you don't realise just how very unwell you've been feeling. She is a star for doing her first insulin injection, I can remember sitting for what seemed hours with a syringe hovering over my leg trying to overcome my fear. 

Take as much support as you need from the diabetes team ongoing, the DSN will become a friend and a go to person for help and adjustments. The people on this forum have a wealth of experience in living with diabetes in all its forms and offer great support and advice. 

I wish you all well


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## Saffyd76 (Aug 8, 2019)

Flower said:


> Hello and welcome Saffy, glad you've found us
> 
> I'm sorry to hear about your daughter's diagnosis. It is a really steep learning curve and you have to hit the floor running but bit by bit the pieces of the new challenge start to fit in to a new normal . She will be feeling a lot better physically with an insulin supply established after her body has been struggling so much but it is all a great big upheaval and does shake you up mentally and emotionally- daughter and parents. Until you start to get more normal glucose levels you don't realise just how very unwell you've been feeling. She is a star for doing her first insulin injection, I can remember sitting for what seemed hours with a syringe hovering over my leg trying to overcome my fear.
> 
> ...


Thanks so much for your reply and support x


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## Saffyd76 (Aug 8, 2019)

Drummer said:


> Your reaction is normal - from what I have read - but how fortunate that your daughter has already reached her teens, seems to be doing well with doing her own injection, and should be able to manage her insulin herself quite quickly if that is anything to go by.
> Has no one reassured her (and yourself) that she will soon be feeling a lot better now that the insulin her body needs is being provided?
> It will soon be a new day - and I do hope that it will bring more reassurance, and perhaps information about the devices which are available these days to help manage type one.
> There are monitors which can be linked to phones so that blood glucose levels are known, trends seen, even alarms given, and pumps which are set to provide the insulin as required - they are not as yet self programming - but your daughter should see advances in the technology and techniques of treatment as she grows up.
> I''d better go to bed - I leave you and your family with my best wishes for the future.


Thanks so much xxx


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## Saffyd76 (Aug 8, 2019)

Northerner said:


> Hi Saffy, welcome to the forum  I'm very sorry to hear about your daughter's diagnosis, Type 1 does tend to hit very quickly  However, don't despair! Although it is a serious condition, the good news is that it is something that can be managed very well and does not have to stop her from achieving  anything she wants to do in life - there are people living with Type 1 in every walk of life you can think of, from ultra-marathon runners to ex Prime Ministers!
> 
> There is a very steep learning curve so try not to become overwhelmed with all the information. If you are ever in doubt about anything, please just ask - either here of your healthcare team. Your daughter was at a similar leve to me at diagnosis (I was 38 mmol/l), although I was diagnosed much later in life, at 49. I've been living with it for 11 years now and although there have been ups and downs I have learned to manage things well, especially with the support and wisdom of the many lovely people on this forum
> 
> ...


That is so helpful - am just putting together an amazon order! Brilliant info - she is currently taking humalog and lantus x


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## Saffyd76 (Aug 8, 2019)

Kaylz said:


> Hi and welcome to the forum  Sorry to hear of your daughters diagnosis
> 
> I was in the same position as your daughter (albeit at a week before my 25th) almost 3 years ago, I'd had a raised finger prick at the nurse that morning went off to work experience for the day with instructions to come back in the afternoon to see a doctor, I did so and she tested for ketones and that was it, taken to hospital in ambulance and put on a sliding scale, it's terrifying,  I was on a sliding scale and finger pricks every hour but also on my own as my partner went home
> 
> ...


Thank you - it’s  so reassuring to know help isn’t at hand x


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## Bronco Billy (Aug 8, 2019)

Hi Saffy, welcome to the forum.

Everything you both are feeling now is very, very normal. The good news is this will change in  time and you will both get used to your new lives.

My daughter was 6 when she was diagnosed and my son was 5. My overwhelming feeling when my daughter (who ’got it’ first) was diagnosed was one of knowing our lives had changed in a big way, but now knowing how. We learnt a bit more each day and gradually became more confident in dealing with type 1 and everything that was once new and confusing became a normal part of our everyday lives.

Your daughter will still be able to live her life as before, but it will take more planning. I hope she doesn’t let it hold her back. My daughter is on the NCS course at the moment, building rafts and hiking, and is away from our gaze. She’s having a great time and doing everything her friends are doing. She has been a member of the local swimming club, even representing the club in competitions. My son does taekwon-do.

Top marks to your daughter for doing an injection on her own so soon after diagnosis. She is probably in shock at the moment and feeling very confused, hence her emotional reaction. I’m sure she will calm down over the coming weeks, but if her feelings do persist over months, it may be worth asking for a referral to CAMHS, the mental health service, but it too early to be thinking about that now.   

Hopefully, the meeting with the diabetes nurse went well and you are both feeling a bit better now. Please feel free to ask any question you feel you need to, and remember, no question is too silly. Don’t be afraid to post your concerns either. There will be people here who have experienced your concerns and will be able to put your mind at ease.

Take care


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## Bronco Billy (Aug 10, 2019)

Hi again @Saffyd76. How are you and your daughter now? I hope things are starting to settle down a bit.


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## SB2015 (Aug 10, 2019)

Hi @Saffyd76 
I hope that things are settling down for you and your daughter.  
One thought was that you might want to consider attending a T1 Family Weekend event.  There is one in Worcester in November this year.  It would be a chance for you to meet with other parents of children with T1, and for your daughter to be one of the ‘normal’ people.  I volunteered at one of these events this year, and found it so good to be surrounded by others with T1, who are simply getting on with life.


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## everydayupsanddowns (Aug 11, 2019)

Hoping your daughter is getting on OK @Saffyd76 - a diagnosis out of the blue line that is a real shock, but it’s not at all uncommon. 

It won’t always be an easy ride, but with modern treatment techniques and gadgets your daughter has every opportunity for a full, happy, adventure-filled, healthy life - just with a rather inconvenient and frustrating condition along for the ride.


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## Saffyd76 (Aug 13, 2019)

Hi everyone, 

I am so thankful and grateful for all of your replies. 

Phoebs is doing ok, a lot of adjustments to take in but hearing it is all quite common really helps; we are currently on set doses of 10,10,10 (Humalog) and 14 (Lantus) which we have been correcting but her sugars are still around 18/19 so this afternoon the diabetes nurse adjusted the insulin to 11,11,11 and 16, so hopefully that will settle.  We have the added complication of going on holiday on Saturday to Kefalonia so have arranged for a repeat prescription which will hopefully be at the pharmacy on Wednesday and the team mentioned using ‘Libre’ which in theory could be fitted on Thursday at clinic, along with an iport as she has been struggling to inject (mainly from the fear) - she is much happier today although she is reluctant to snack in between meals although I know she is hungry so any advice is welcome...  
As for me, I am flitting between fear and guilt - the guilt thinking if I should have realised and pushed for blood tests sooner or even contemplated type one (which I hadn’t) and the fear of the unknown which I suppose are quite normal, however am wondering if I will ever sleep soundly again?!  (bit of a nightly pattern of sleeping, dreaming, going in to check if she is ok etc) 
Anyway, had better head off to try and sleep! Thanks again, it is so comforting to know that help and support are out there. 
Saffy x


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## Saffyd76 (Aug 13, 2019)

SB2015 said:


> Hi @Saffyd76
> I hope that things are settling down for you and your daughter.
> One thought was that you might want to consider attending a T1 Family Weekend event.  There is one in Worcester in November this year.  It would be a chance for you to meet with other parents of children with T1, and for your daughter to be one of the ‘normal’ people.  I volunteered at one of these events this year, and found it so good to be surrounded by others with T1, who are simply getting on with life.





SB2015 said:


> Hi @Saffyd76
> I hope that things are settling down for you and your daughter.
> One thought was that you might want to consider attending a T1 Family Weekend event.  There is one in Worcester in November this year.  It would be a chance for you to meet with other parents of children with T1, and for your daughter to be one of the ‘normal’ people.  I volunteered at one of these events this year, and found it so good to be surrounded by others with T1, who are simply getting on with life.


That sounds great we are only in South Wales so Worcester isn’t too far away for us - thank you.


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## SB2015 (Aug 13, 2019)

Good morning @Saffyd76 
Good to hear that Phoebe is coping better, and no surprise to hear that you are finding it an emotional struggle.  However it really DOES GET EASIER to manage.

If they have offered you a Libre, snap it up.  It makes life so much easier, and I found it a goal game changer for managing my T1.  Also checking phoebe at night you just go near her and pass the reader over her arm and that you give you a glucose reading.  Great for your peace of mind.  For Phoebe it will mean she can check as many times as she wants with out a finger prick.  There are plenty of people on here who are desperate to be offered one.  Take up their offer with a big smile.  As you are off on holiday I would also put a dressing over the Libre to avoid it falling out when swimming etc.  I got tegaderm from the chemist, cut a small hole in the centre of it before applying to let the Libre have a hole where it wants one in the centre, and then I confidently swim etc.

It sounds like the import would give Phoebe the chance to not worry about doing injections whilst away, and then tackle that on her return, when she will be preparing for school.  I am sure that your team will work on that with you, just to make things as easy as possible.  But first enjoy the holiday.

Let us know how you get on.


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## Bronco Billy (Aug 13, 2019)

Hi Saffyd76. I’m really happy to know that things have settled down.

You have no need to feel guilty. When my eldest was diagnosed, she had all the classic symptoms, but we had no reason at that point to be aware of them. Even the GP didn’t seem too concerned when my wife took her to see him the day before she was rushed to hospital in an ambulance in a life-threatening condition.  When my son was diagnosed a few months later, we saw it coming a mile away. When he had blood and urine tests done at our request, they both came back clear, but somehow, we knew. You live an learn. 

If you have the chance of a Libre, grab it! Both of mine have been lucky enough to have been given one, and they wouldn’t be without it.

As for snacks, there are some zero carb options out there. Cheesestrings, meat slices etc.

Has anything been said yet about training school staff?

Have a great holiday and try not to worry.


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## everydayupsanddowns (Aug 14, 2019)

Don't blame yourself or beat yourself up @Saffyd76 - T1D is just one of those things. Nothing you could have done to prevent it, and you can't be aware of everything to spot every potential medical condition before the medics do.

Some parents find Libre and Miao Miao (or alternatives like Dexcom) helpful, with or without 'Nightscout' as these are ways of you getting alerted to changes in BG overnight in a different room (or even if your littlun is away at a sleepover or on some outward bound adventure). Early days for you guys yet... but just know htat there is nothing that you will face that others haven't been through already, and there may well be a hint / tip / strategy / or gadget to help you out.


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## TheClockworkDodo (Aug 14, 2019)

Saffyd76 said:


> Hi everyone,
> 
> I am so thankful and grateful for all of your replies.
> 
> ...


Hello Saffy and a belated welcome to the forum.  Sorry to hear about your daughter's diagnosis - I know how it feels to have the call to go straight to hospital - I spent a week there in DKA, though I imagine it was a lot less scary for me as I was 44 when I was diagnosed.

As your daughter's blood sugar was so very high they are probably bringing it down gradually, as that is safer - going from 37 straight down into normal range would not be very good for her, so getting down to 18/19 after a few days and increasing the insulin gradually is the safest thing.

As everyone has said, do take up the offer of the Libre, it would definitely be worth having one.  The readings aren't always entirely reliable, so if in doubt do test as well, but overall it will mean fewer finger prick tests for your daughter, and will give you peace of mind because you can scan it in the night without waking her and make sure her blood sugar's at a sensible level.  It has arrows so you can see whether her blood sugar's going up or down, and lots of other useful information.

If your daughter's scared of the needles it is possible to get covered ones, which might be an alternative to the iport in the longer term (I use them as I can't see needles going in without passing out so I've never done an injection with an uncovered one!).  If she is reluctant to inject because they're hurting her rather than because she's scared of needles she may just need a different brand of needle (some of the cheaper ones are not as good, and also some are longer than others) or for a diabetes nurse to go through her injection technique with her again and make sure she's getting the needles into the right places.

Walnuts, pecans, and chunks of cheese are all good snacks for now, and if she wants a biscuit with the cheese TUC biscuits are only 2.7g carbs each.  Once her blood sugar's down a bit further she could go slightly higher with the carbs for snacks - eg other nuts, or a lot of us eat a couple of squares of dark chocolate (85% cocoa or more) as that's pretty low carb.  If she wants an ice cream on holiday she might be OK with that if it's a proper creamy gelato type and not a sugary/fruity one, but she might need a little extra insulin for it (I found I only needed half a unit for one scoop of mint choc chip with no cone, but I'm on quite a lot less insulin than she is).

Enjoy your holiday! - just make sure you take the contact details for the diabetes team so that you can get in touch with them if you need them, and we are always here if you need advice about anything.  Do you have a Frio wallet or something similar to keep the insulin cool if it's hot?


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## Northerner (Aug 15, 2019)

Just another couple of helpful things  If you are on Facebook there is an excellent group 'Parents of Children With Type 1 Diabetes In The UK', which may give you access to others who have been in your situation, and perhaps some children around your daughter's age in your area  Also, a useful free little book from Diabetes UK '100 things I wish I'd known about diabetes' containing words of wisdom from people living with diabetes of all types (including some contributions from forum members!)


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## TheClockworkDodo (Aug 15, 2019)

I had a couple of other thoughts about your holiday, @Saffyd76 - you may have already been told these, but just in case -

You might want to get a letter from your GP or diabetes team to explain why you are carrying medical equipment through customs, if you still have time to organise this - you probably won't need it, but it's useful to have one just in case you get a jobsworth at the airport.

You can get a lanyard at the airport which (discreetly) alerts the airport staff you're travelling with someone with a medical condition.  I'm not sure how you do this, but someone here will know, or you could search the forum for lanyard.

Make sure you keep all your daughter's medical supplies in hand luggage, partly so you don't risk losing anything, and partly because insulin can't go in the hold in case it freezes.  Ideally take twice as much as you think she will need and split it between her hand luggage and yours.  I don't know about Humalog, but if I remember rightly Lantus needs to be kept below 25c so if you don't have a Frio you'll need some other kind of cool wallet for the insulin (but don't put it next to an ice pack).

Take plenty of hypo treatments - jelly babies or dextrose tablets are ideal for travelling.  I know her blood sugar's high at the moment, but the effect of being on holiday in the sun could easily send it plummeting.  Be prepared for the unexpected! - extra exercise, eg swimming or walking, might send her blood sugar down rapidly, though lying on the beach all day might send it up.  Excitement might send it up or down.  Hot weather might send it up or down (it varies from person to person).  So if it's doing unusual things, don't panic, just be ready with hypo treatments or extra insulin as needed.  If she starts having hypos and you can't get in touch with the diabetes team immediately, I should drop her insulin doses first and talk to them second rather than waiting!


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## Saffyd76 (Aug 16, 2019)

Tgab


everydayupsanddowns said:


> Don't blame yourself or beat yourself up @Saffyd76 - T1D is just one of those things. Nothing you could have done to prevent it, and you can't be aware of everything to spot every potential medical condition before the medics do.
> 
> Some parents find Libre and Miao Miao (or alternatives like Dexcom) helpful, with or without 'Nightscout' as these are ways of you getting alerted to changes in BG overnight in a different room (or even if your littlun is away at a sleepover or on some outward bound adventure). Early days for you guys yet... but just know htat there is nothing that you will face that others haven't been through already, and there may well be a hint / tip / strategy / or gadget to help you out.



Thanks so much for your kind reply x


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