# Signs and symptoms



## mum25 (Mar 23, 2016)

Hi all,
I'm new here and after some advice please.  My little girl aged 10 is showing signs of diabetes and I could really do with some advice on what to do next.

She has been seriously bed wetting for the last few weeks and there is no sign of this easing up.  To give you an idea of the amount she is losing, she has a waterproof mattress protector, normal protector, 2 rubber backed large bed pads, 3 disposable bed pads, her sheet and 2 towels on her bed plus we have put her into pull up style pants for children that wet overnight (to which she was mortified).  She wets through this lot every night right down to the waterproof mattress protector  We are waking her up a couple of times a night, she has already wet and still goes for another wee.

On top of this she is extremely thirsty, all the time, she will drink and then ask for another. We have tried to cut her down at night time but it makes no difference at all to the amount of fluid she loses and I am worried that she will dehydrate. She is weeing approx every half hour through the day too.

She has started to tire very easily, a short walk, or going up the stairs makes her breathless (this is new since Monday)

Last night she complained of stomach pains after she'd eaten.

Yesterday she has really cold and couldn't warm up, this has on reflection been ongoing for a few weeks but getting worse.

I took her to the Dr on Monday who did a urine stick test, I'm not entirely sure what level of positive showed up but she had glucose in her urine as well as an infection. The dr has given her trimethoprim (antibiotics) for the infection and our daughter is on day 2.5 of taking them (no improvements in her symptoms at all).  She had a blood test yesterday for:
glucose levels (she fasted 12 hours), kidney, liver and thyroid function, bone profile, full blood count, vit D, B12, iron and pituitary gland and c reactive protein.  The phlebotomist advised me it would take 2-3 days for the results to get back but wasn't sure how Easter may affect timings.

The GP advised us to make another appointment in 2 weeks but the nearest we can get is 12 April and in the meantime I'm panicking   I've googled to my hearts content and that could of retrospectively been the worse thing I could of done or the best.  Do I try to get her back to the GP or take her straight to A and E or see if the antibiotics start to kick in?  I'm always mindful that our drs etc are flat out and I could just be a paranoid parent but she is seriously worrying me.

Any advice really appreciated.

Thanks


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## Lynn Davies (Mar 23, 2016)

How distressing for both of you!

Speaking as a mum here and not an expert but - I would contact your surgery and ask if the nurse can do a finger prick test for you.  The antibiotics may take a few days to work if it is a particularly bad infection so it could be a bit soon.

I do hope your daughter gets some relief soon.

Report back with what the surgery says.


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## Sally71 (Mar 23, 2016)

Hi there

Oh I do feel for you!  Unfortunately most GPs see very few type 1s and seem to base all their diabetes knowledge on type 2 and they are treating your daughter as such, with T2 they have more time to mess around before deciding on diagnosis, unfortunately a child with suspected T1 can deteriorate VERY rapidly!  I was in the same situation and unfortunately didn't know enough about it to argue at the time, I was just pleased that something was being done.  Our daughter was less than 24 hours away from going into a coma when we finally got her to hospital, this was less than a week after the GP declared her urine test normal!

Urine tests are a waste of time in my opinion, ask your GP if your daughter can have a finger prick blood glucose test, they must have all the kit there and it takes seconds to do and get the result.  If that shows anywhere above 8 (which it almost certainly will if she has glucose in her urine) then she should be referred immediately to a paediatric specialist diabetes team at hospital.  If the GP route doesn't work then get her straight to A&E!

Sorry to sound like a panic merchant, but it really is critical, your daughter is displaying all the signs of type 1 and if she has indeed got it then she needs to be started on insulin as soon as possible, or she will go into DKA which is life threatening.  Therefore you need to get the correct diagnosis urgently, 2-3 days time might be ok for most illnesses but it isn't good enough in this case!

Good luck, let us know what happens


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## mum25 (Mar 23, 2016)

Thank you both.  I've just spoken to our GP surgery and they've said finger prick testing for diabetes isn't a service they offer.  My daughter's blood results aren't back yet but if I want to phone back tomorrow afternoon they may be in then, they're shut this afternoon.......


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## Lindarose (Mar 23, 2016)

Hi mum25. I'm sorry to hear you and your daughter are having such a struggle. 
Having worked in A/E reception for many years I would suggest taking your daughter there straight away. Even if it isn't diabetes it sounds like your daughter needs attention now. I know A/E dept is always busy but no one would consider you a time waster taking along a child with the symptoms you've described. 
Good luck to you both and hope she's soon feeling much better.


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## KateR (Mar 23, 2016)

I hope thing work out for your daughter but if you are still very worried, I would take her to A and E.


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## Sally71 (Mar 23, 2016)

OMG I can't believe that!!!  When my daughter was diagnosed the GP said the urine test was normal.  But to be on the safe side we should do a fasting blood test (which I've since found out is correct for diagnosing T2 but not T1 which should be treated as an emergency, unfortunately not many GPs seem to realise this!).  Not knowing any better I agreed and was pleased that the doctor was being thorough and doing lots of tests.  We had to wait 5 days for the appointment for the test, and unfortunately daughter started going downhill fast during that time.  Had the test on a Tues morning, by Tues evening daughter was getting weaker by the minute and not eating anything at all.  Wed am GP rang at 8.05 am to ask if we could bring her back in.  By that stage she was so weak she could barely stand up, never mind walk, and hubby had to carry her everywhere. Blood test had come back with everything normal except glucose which was 18 (should be about 5). They did a finger prick test pretty sharpish then, and it was off the scale!  And this was only 6 days after urine test was apparently normal!!

Please, please take your daughter to A&E today, explain what's happened and that you just want to know for sure whether he she has type 1 or not.  If by some miracle she hasn't then you can probably breathe a sigh of relief and wait for the GP's test results.  But if she has got it, and to be honest high blood sugar can cause all sorts of other problems like urine infections, then you will be in the right place.  Honestly, another couple of days might make all the difference 

Sorry to sound so pushy but I've been there and got the t-shirt


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## robert@fm (Mar 23, 2016)

mum25 said:


> I've just spoken to our GP surgery and they've said finger prick testing for diabetes isn't a service they offer.



It's such a simple, quick and (relatively) cheap test to offer.  I believe some large pharmacies (such as Superdrug) offer this test. But I agree with the other replies; your little one needs to get to A&E sharpish. 2-3 days could be pushing it.


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## mum25 (Mar 23, 2016)

Thanks for your replies, you have all confirmed my instinct so I will be taking her to a and e. I didn't realise that the fasting test is just for type 2, so is the only way they can diagnose type 1 by the finger prick test?


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## Northerner (Mar 23, 2016)

mum25 said:


> Thanks for your replies, you have all confirmed my instinct so I will be taking her to a and e. I didn't realise that the fasting test is just for type 2, so is the only way they can diagnose type 1 by the finger prick test?


The finger prick test should be used in the light of your daughter's clear symptoms of potential Type 1. They should also do a test for blood ketones, which can be another indicator of Type 1. I agree with the others, your surgery clearly do not understand the urgency of the situation and A&E should be your next port of call. The sooner you get clarification, the better - even if it is not diabetes, the risks that it is and remains untreated are too great to ignore. Good luck, let us know how things go. Does her breath smell of pear drops, by any chance? This is an indicator of high ketones.


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## Sally71 (Mar 23, 2016)

mum25 said:


> Thanks for your replies, you have all confirmed my instinct so I will be taking her to a and e. I didn't realise that the fasting test is just for type 2, so is the only way they can diagnose type 1 by the finger prick test?


A fasting test can diagnose T1 as it will show that the blood sugar is too high, as in my daughter's case.  But a child with undiagnosed T1 can deteriorate extremely rapidly, as I think my daughter's case shows, to the point where they have life-threatening symptoms.  Therefore there really isn't time to faff about doing fasting tests, a finger prick can be done on the spot and the result reads out within seconds, if that shows anything above normal then you should be referred to hospital without delay to get more detailed lab tests done, and then appropriate treatment as quickly as possible.  As Northerner says they can also do a blood ketone test which will also show the likelihood of diabetes.  

Whereas type 2 comes on much slower so there is time to do fasting tests and take their time to make an accurate diagnosis as a few days longer in that situation makes no difference at all.

My daughter had an apparently normal urine test, followed 6 days later by another which was full of glucose and ketones, fasting blood glucose of 18, finger prick test off the scale (more than 33) and laboratory glucose test of 46 (normal levels are approx 4-8)!

I realise that GPs are a bit of a "jack of all trades" and can't be expected to know everything about every possible illness or medical condition, they really ought to be able to spot potentially life threatening symptoms though, which undiagnosed T1 is if it progresses to DKA.  I remember our diabetes team talking about this not long after my daughter was diagnosed, they said GPs should have more training in this.  Sadly that hasn't happened


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## Sally71 (Mar 23, 2016)

This reminds me of another family I know who have a teenage boy with T1.  When he was diagnosed the GP was a bit more switched on than mine and did a finger prick blood ketone test.  The result was so high that she thought the machine was broken!  So she fetched a different meter and new packet of strips, only to get the same result.  Her reaction was "I didn't know ketones could go that high - hospital NOW!"

Good luck mum25, I hope your daughter is soon sorted.


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## pinksha (Mar 23, 2016)

Hi. I am a bit of a lurker, but your post has made me want to comment. If your daughter starts to vomit, please get her to A & E quickly.  High ketone levels can cause vomiting and this can very quickly become very serious, and she will need hospital care, whatever the Drs surgery says.  You will not be wasting anybody's time by taking her to A & E to get a diabetes diagnosis confirmed or otherwise.  With all best wishes.


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## mum25 (Mar 23, 2016)

Thank you, am heading off to a and e with her, assuming this is type 1, is it likely she will be staying overnight? sorry to sound naive totally overwhelmed by this whole prospect and need to get childcare organised etc


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## Northerner (Mar 23, 2016)

mum25 said:


> Thank you, am heading off to a and e with her, assuming this is type 1, is it likely she will be staying overnight? sorry to sound naive totally overwhelmed by this whole prospect and need to get childcare organised etc


Yes, if it is Type 1 it is very likely she will be kept in overnight, particularly if ketones are high as they will want to start her on insulin. It's possible that you may have caught things early enough though, but I would bank on her being kept in. Good wishes to you.


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## Sally71 (Mar 23, 2016)

Yes probably, my daughter was in for 2 nights.  If it is T1 they will have to monitor her until she's down to safe levels and then teach you how to manage it at home, they won't let you out until they are happy that you can cope with it ok.

((((((hugs)))))) to you and your daughter.


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## SB2015 (Mar 23, 2016)

Hi Mum25
I hope that you have now got a clear diagnosis.
Let us know how things are going when you have time.


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## trophywench (Mar 23, 2016)

OMG - poor thing!

When you have a minute - which could be a while I know that - take your GP surgery to the cleaners - I don't mean monetarily but that is absolutely DISGUSTING behaviour with a child with those sumptoms!!  It still would be with an adult.  You must must must OFFICIALLY complain - in writing.  They really should NOT be endangering anyone's life in this way.  And frankly - they have.


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## stephknits (Mar 23, 2016)

Wishing you and your daughter all the best.  Hope a&e is proving helpful and you get some answers and help.


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## mum25 (Mar 23, 2016)

Thank you all SO much, blood sugars 19.2, ketone 6.8. Awaiting the dr at the mo. Will keep you updated but just wanted to say a massive thank you. I believe my daughter was really in danger, her breathing is laboured and she can hardly walk.


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## Lynn Davies (Mar 23, 2016)

Thank goodness you took her to A&E. Glad she is getting the care she needs *phew*


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## Sally71 (Mar 23, 2016)

It's the ketones that are really evil and those are really high!!  So glad you are getting sorted, laboured breathing is another bad sign 

Glad to help, your daughter will improve really quickly once the treatment starts.  It's a lot for you to get your head round but we're here to help, if you have any more questions please ask!  We've all been there, no question is too silly!

I don't want to think about what would have happened if you'd waited for that appointment on the 12th - I hope you are going to talk to your GP about it when you get the chance!


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## Northerner (Mar 23, 2016)

mum25 said:


> Thank you all SO much, blood sugars 19.2, ketone 6.8. Awaiting the dr at the mo. Will keep you updated but just wanted to say a massive thank you. I believe my daughter was really in danger, her breathing is laboured and she can hardly walk.


Sounds very much like I was just prior to my diagnosis, thank goodness you recognised the symptoms and sought help beyond that offered by your GP. Wishing you both well, please update us when you are able


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## Flower (Mar 23, 2016)

Wishing you both well mum25. It is appalling for a gp surgery to overlook the glaring symptoms of T1 in a child or anyone for that matter. I'm so relieved to read you are in the best place to get the help your little one needs and once an insulin supply is restored she will start to feel so much better.


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## stephknits (Mar 23, 2016)

Those ketones were very high, well done you for being so proactive - a supermum!  You should see a great improvement once your daughter is on insulin, it really is amazing how quickly you can feel better.  
Once everything is more settled and you want to get your head around the diagnosis etc, there are some other amazing super-parents on here, as well as plenty of older folk who are all rooting for you


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## SB2015 (Mar 23, 2016)

I am so pleased that you went to A and E.  I hope that your daughter starts to feel better soon.
This is the start of a new normal, and as Sally says we have all been there so keep in touch and keep asking any questions.

When you feel able to do so, it would be well worth you making an appointment to see the GP, just to explain the importance of treating the symptoms that your daughter had as an emergency.


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## pinksha (Mar 23, 2016)

I am so glad you took your daughter to A & E and she is getting the correct care, such high ketones and laboured breathing are indeed a very bad sign which landed me in the HDU for a few days many years ago.  I really hope you have a supportive paediatric diabetes care clinic and they educate your Drs surgery, as when you are home and sorted out, you will of course be getting her prescriptions from them, I would like to think your clinic will tell your surgery what danger they put your daughter in by not acting as they should have. There are some very knowledgable parents  on here, and some of us who are not parents but have lived with diabetes from a young age, who will help you all the way.  With best wishes to you and your daughter


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## trophywench (Mar 23, 2016)

Thank God you were suspicious enough to come and ask here.  Please give her a massive hug from all of us - and - methinks you can do with one yourself!!  {{{Hugs}}}

Poor thing should be on a drip shortly - but she'll be so dehydrated - and her body will desperately need some potassium amongst other things, which the drip will include - however uncomfy it is sleeping with em in, she'll need it.

Now you possibly know that we are 'affiliated' to Diabetes UK, the general UK charity - but their is another charity - an organisation MUCH more appropriate for you right at the moment called JDRF - https://jdrf.org.uk/  - the Junior Diabetes Research Foundation.

They produce a pack for newly diagnosed children and their families and I urge you to make contact as soon as you can.  They run all sorts of meetings and outings and info days for both children and parents - and as their name suggests, get shedloads of major research for the young uns, whereas DUK have to cover all of us whatever Type of D we have, from cradle to grave,  they are both good, but JDRF is just more specific especially at the moment.

She'll have a whole team looking after her very shortly! (and you LOL)  There will be a specific Pediatric Diabetes Team - Doctors, Consultants, Nurses - Diabetes Specialist Nurses (who are VERY knowledgeable, caring and helpful people) Dieticians, Psychologists ...... LOL

You'll be amazed at what you get and what you are SUPPOSED to get - in comparison to your awful GPs treatment.

Good luck to both of you! - she will, honestly, feel a LOT better soon.


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## mum25 (Mar 24, 2016)

Thank you all for your lovely words and good wishes. She is in the critical care section of the children's ward, had 2 fluid drips and just started her on a small dose of insulin. The nurse looking after her has been wonderful and already started to tell me about the team who will be looking after her (us?!). Tbh I feel absolutely overwhelmed at the prospect of the future but know that I have this support forum (and the websites mentioned) to help us along the way. Honestly, I'm totally drained but so, so appreciative of all your recommendations in getting her here in time. Total respect and love to you all.


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## Lindarose (Mar 24, 2016)

Hi mum25. Just in from work and very relieved to hear your daughter is in the right place now. It's been a terrible frightening ordeal for you both. I just want to wish you both well and look forward to hearing progress reports. Thanks for letting us know how she's doing so far. I hope you manage to get some sleep now


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## Sally71 (Mar 24, 2016)

Total respect to you to for recognising that the situation was much more urgent than your GP would have you believe!

So sorry you are in this situation, it's one hell of a shock and your lives have changed forever. Tough at first but it does get easier, and you've got lots of help available.  You'll probably find that your daughter will be absolutely starving all the time for a few weeks while her body tries to rebuild itself - that will eventually subside!

Thank you for keeping us updated. Best wishes to you, your daughter and the rest of the family.  And welcome to the forum by the way


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## Northerner (Mar 24, 2016)

Hope she (and you!) have had a good night  I felt completely transformed once I had started receiving insulin, so hoping she does too! In case you get bored, here are some links to good resources:

Type 1 – the basics, a support and information pack for children (JDRF)

Type 1 Diabetes in Children Adolescents by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes.

Children with Diabetes website - a very supportive and active site with an email list for exchange of support, information and advice.

You might also like to read Adrienne's guide for parents of newly-diagnosed children

Plus, of course, a wealth of information here whenever you need it


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## SB2015 (Mar 24, 2016)

Thank you so much for keeping us updated.  I am pleased that your daughter is now getting the care that she needs.  Lots to learn for both of you, and lots of help available.


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## Adrasteia (Mar 24, 2016)

So pleased and sorry for you at the same time! But everyone here is right - she is going to feel a lot better very soon. You? Possibly not so much - and it's ok to feel like that.

The community here is fantastic, whether you need info or just a meltdown with people who know where you are coming from. However you and your family are feeling, and whatever you difficulties you are facing, someone on here has been or is going through the same and there's always really practical advice so ask.

Also, I'm with TW on giving your GPs a thorough chewing out. Appalling. Apart from the fact that they clearly need it (and it might make you feel better!), I can highly recommend it as a service sharpener - I made a bit of a scene at mine (and the pharmacy) early after diagnosis when I wasn't happy with things and since then then they've been extremely accommodating! 

All the best to your family, you're doing a fantastic job already getting her the care she needs.


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## KookyCat (Mar 24, 2016)

Well done Mum25, your daughter is in the best place, they'll get her sorted now.  Thank goodness you sensed the advice wasn't right.  I hope she starts to feel better very soon, and do let us know how she's doing.  Definitely let the GP know the error of their ways, it might save a life.  There are loads of great people here with loads of experience so don't be afraid to keep the forum warm it helps to talk to people who understand


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## Matt Cycle (Mar 24, 2016)

Just read through all this and I hope Mum25 that your daughter is now feeling much better.   Well done to you on recognising what was wrong and doing something about it.  Good work. 

I cannot believe what the GP did.  After you explained the symptoms, a urine test showing glucose - all this in a 10 year old girl and what does the GP do? - prescribes antibiotics.   I agree you should speak to the GP to ensure they are fully aware of what has happened and something like this doesn't happen ever again to anyone else.


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## robert@fm (Mar 24, 2016)

Matt Cycle said:


> I cannot believe what the GP did. After you explained the symptoms, a urine test showing glucose - all this in a 10 year old girl and what does the GP do? - prescribes antibiotics.


I have personal experience of how clueless a few GPs can be.  In autumn 2007 I was suffering constant tiredness, and I saw a GP (not one I'd seen before) and accurately described to her all my symptoms, including waking up in the night several times with the knowledge that what had woken me was that I'd stopped breathing in my sleep -- and she concluded that I was just malingering!  Fortunately, about six weeks later I was admitted to hospital with an unrelated problem, and while I was on the admission ward the nurses picked up the breathing problem and correctly diagnosed obstructive sleep apnoea (a highly dangerous condition if left untreated), and I finally got the correct treatment. Needless to say, I made sure I never saw that particular GP again, as I had no confidence in her judgement.


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## mum25 (Mar 24, 2016)

Update

Thanks once again for all the good wishes. I'm happy to report that our daughter is making progress and has been up and about today. We've met some of the team who are looking after her and I'm seriously impressed. One of my sons has special needs and I've had to fight every step of the way to get him the services he needs, so it's an alien concept having it from the start!! Her blood sugars are still high and some ketones still but much less. I've given her a dose of insulin and shook and panicked all the way through, apparently "daddy is much better". Got to get my head around this.


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## mum25 (Mar 25, 2016)

Oh and re the GP from what I understand, the consultant will be dealing with that for me


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## trophywench (Mar 25, 2016)

LOL at Mummy's difficulty!!

Recommendation - ask for a few disposable insulin syringes - or nip into a chemist and treat yourself to a packet (LOL) (1.25 for 10) (Diabetics don't pay the VAT)

These come with the needles firmly affixed.  Then - practice stabbing yourself with them!  If your technique is correct - you will not feel the needle at all - merely your hands on your skin.  If you get clammy with fear, or the skin is otherwise wet - it hurts like stink!

Blokes are usually much better at stuff like this, see it's technical same as changing sparkplugs or sawing wood etc LOL - hence they are quite confident about doing it.  Being confident does actually make all the difference!


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## Lynn Davies (Mar 25, 2016)

No advice on stabbing I am afraid but I am so pleased that your daughter is picking up quickly.

I would love to be a fly on the wall when your consultant contacts your dr - hehe


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## SB2015 (Mar 25, 2016)

Great to hear that you'd up aught ear is making progress and that you have done your first injection.

Also pleased that the Consultant is going to deal with the GP.


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## Northerner (Mar 25, 2016)

Sounding good  How is she with the injections? Not scared of them, I hope? The sooner she can pluck up courage to do them herself (under supervision) the better - unfortunately she has had to grow up fast in this respect and must now learn to look after herself and not resent the diabetes, so try not to make a big thing of it, just something that has to be looked after for a few minutes each day so she can stay healthy and get on with her life  It's great to hear that she has a good team behind you all, it really makes a big difference  What insulin have they put her on?


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## Sally71 (Mar 25, 2016)

So glad to hear your daughter is doing well - thanks for posting 

You'll get used to doing the jabs - because you HAVE to. Make the most of the medical team - sounds like you've got some good people there so put them to good use and keep asking as many questions as you need to.  I don't know how I'd have got through the early months without our DSN! Then once you've been doing it for a while you will be able to start becoming more self-sufficient and just get on with it yourselves.  You've got to be strong for your daughter - I'm sure you know that already - and show her that this isn't the end of the world, life will be a little different now but it still carries on and it shouldn't stop her from doing anything, you just have to be a little more organised.  If YOU need to have a cry or a rant just try not to do it in front of her, this forum is rather good if you need a rant, lots of sympathetic people who know exactly how it feels because they've all had the same sorts of feelings and problems too!

Oh dear I sound like I'm giving you a lecture a bit there...  So I'll stop and just wish you as a family all the best again, glad things are improving 

And @Lynn Davies took the words right out of my mouth (or fingers ) - I'd like to be a fly on the wall too when your consultant speaks to your GP, in fact I think there might be an extremely fly-infested wall somewhere...


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## SB2015 (Mar 25, 2016)

Wishing you well.  It certainly sounds as if you have a good team around you.  Use the support available and together with the rest of the family you will learn a lot.  

Keep us informed with your daughters progress


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