# Mum to newly diagnosed type 1 6 yr old girl



## Laurajane38 (Sep 25, 2019)

Hi 
I’m completely new to all of this my 6 year old daughter was diagnosed with type 1 Friday - it’s all so raw and scary still we are trying to get our heads around it all so any advice that anyone has would be VERY much appreciated x


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## SB2015 (Sep 25, 2019)

Laurajane38 said:


> Hi
> I’m completely new to all of this my 6 year old daughter was diagnosed with type 1 Friday - it’s all so raw and scary still we are trying to get our heads around it all so any advice that anyone has would be VERY much appreciated x


Welcome to the forum Laura, but sorry to hear of your daughter’s diagnosis.

First and foremost there is a massive amount to take on board very quickly at diagnosis, BUT it really does get easier.  Was she admitted to hospital?  Is she home now?  

You will have met her diabetes team and they will help you to learn things you need to know step by step, and there is plenty of help and support available in here.  Whatever questions you have just ask.

A book that lots of us have found useful is Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas.  It is very clear and well written, a good reference for everything and has clear diagrams.  Not cheap but I found it worth it.  It is also regularly revised with the latest developments.

I will flag @Sally71 and @Bronco Billy who also have children diagnosed with T1.  

Keep in touch, ask whatever questions you have.


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## Laurajane38 (Sep 25, 2019)

Hi
Thank you for your reply 
She was admitted to hospital on Friday after I took a urine sample to the doctors as she was randomly bed wetting that’s when they found a very high glucose level 33! Thankfully she wasn’t unwell and I’m thankful I caught it before she got poorly - she’s her normal happy self which is great and after a weekend of starting her on insulin straight away we are now home 
But I’m struggling to come to terms with it all one minute I think I’ve got this and the next I’m in pieces , I know it’s normal to feel this way but it’s so very hard.
We have a dietician app today so hoping she will help a lot 
Thank you for the book tip I’ll have a look at that it’s nice to know I’m not alone


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## Thebearcametoo (Sep 25, 2019)

Hi. Sorry to hear about her diagnosis. It is a lot to take in. Your diabetes team is there to give you lots of information and support. Don’t be afraid to ask them about anything you’re unsure of. They will also help educate school so that injections can be done there. There is a lot to take in to begin with and it feels so overwhelming. This is normal. We’re just over 6 months since my daughter was diagnosed and it (generally) feels so much easier now but those first few months were an emotional rollercoaster and I felt like my brain might explode. 

We’re here for moans, questions, offloading, whatever you need.


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## Laurajane38 (Sep 25, 2019)

it’s comforting to know that things will get easier it’s just so hard to see the light at the end of the tunnel
She’s being brilliant with it all it’s us parents who arnt doing so well


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## Thebearcametoo (Sep 25, 2019)

I think that’s common. It’s a big scary thing to happen to your child and throws you back to the sort of level of responsibility as when they’re much smaller (plus carrying more kit around again). We all found the lack of independence at the beginning difficult but we’ve developed strategies to deal with that and are slowly finding other adults who can cope with the odd meal or so or other ways of letting her be with friends etc. She’s continued to do sports and be a healthy kid other than the diabetes. 

The book SB suggested is good for dipping into when you have questions. The Carbs and Cals app and Bol are really helpful for carb counting (I find the book easier to use than the app). Give yourself a little while to take it all onboard and then in a couple of months books like How to Think Like a Pancreas can be good but it depends on whether you’re an ‘I must read all the books’ sort of person or not. Right now you already have a lot of info to take on board so don’t worry too much about understanding the whys and wherefore just focus on the day to day how to do it.


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## SB2015 (Sep 25, 2019)

Laurajane38 said:


> it’s comforting to know that things will get easier it’s just so hard to see the light at the end of the tunnel
> She’s being brilliant with it all it’s us parents who arnt doing so well


I am glad that you were so on the ball and picked up on the symptoms early.
Good to hear that your daughter is not phased by all that this involves, 
and understandable that you as parents are finding it hard.  

Take things step by step, and just keep asking absolutely any questions that you have.
Nothing is considered silly on here.  We all understand how much there is to learn.


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## Bronco Billy (Sep 25, 2019)

Hi Laura, welcome to the club! 

It always is the kids who adapt better than the parents. Maybe it’s the innocence.

Your daughter is the same age as mine when she was diagnosed 10 years ago. As others have said, it will get easier. Now is the hardest time, everything is new and confusing. With each day, you will become more knowledgeable and more experienced, even if you don’t realise you have. What seems difficult and hard work now will soon become a normal part of your everyday life to the point where it will be so routine, you won’t really notice you are doing anything out of the ordinary.

You have learnt already that diabetes has a mind of its own. Even after 10 years of dealing with my daughter and son (who was diagnosed a few months after his sister) it still toys with us. A classic is BG levels. My children can start the day at a similar level and do the same things and eat the same food, but it’s not uncommon for their levels to go in opposite directions. Please don’t be worried by this, you will counter it with what I call expert guesswork. In other words, your experience will tell you the right thing to do, even if you have never faced the situation before. There will be mistakes along the way, we’ve all made them, so don’t beat yourself up when they happen. Everything is a learning opportunity. 

Stay positive because your daughter can still do what she wants with her life. Diabetes will only hold her back if she lets it. There are many examples of people achieving great things in their field despite having diabetes. Sure, life will need more planning and spontaneity will no longer be a part of your lives, but it’s simply part of the new ‘normal’. 

Please feel free to ask any questions you want, and remember, no question is too silly. You may have noticed the ‘parents’ board a little bit further down the page. That’s a good place to be amongst friends.

Take care.


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## Bronco Billy (Sep 29, 2019)

Hell again @Laurajane38. How are things going?


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## Laurajane38 (Sep 30, 2019)

Thank you so much for your kind words and advice ! Things a slowly getting a little easier but the worries still the same I guess that to eases with time 
I’m a little confused about nighttime levels what levels are you guys happy with before bed I’m worried if it’s too low they will drop further it was just over 6 this eve , it’s early days and maybe need the nighttime insulin tweaking abit ? I’ve got an appointment with peadiatrion tomorrow so will ask them I just worry a lot at nighttime xx


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## TheClockworkDodo (Sep 30, 2019)

Hello @Laurajane38 and a slightly belated welcome to the forum.

I don't know whether children should be aiming for the same bedtime levels as adults, but I was told to aim to be around 8 at bedtime, so if I'm much lower than that I have a small snack to get my level up a bit.  Something like a couple of TUC biscuits and a piece of cheese works for me.  A small pot of yogurt or fromage frais would have the same effect (the fat slows down the effect of the carbs so that blood sugar is more likely to stay stable through the night).


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## SB2015 (Sep 30, 2019)

Hi @Laurajane38 

I am glad that things are beginning to settle down.  It is not surprising that you worry, especially at night, but even this will get easier. Some thoughts for your appointment tomorrow

Have you heard of the *Libre*. This might help with night time worries
This is a sensor worn in the arm which shows you what is happening all the time, without a finger prick.  You can get the reader and pass it over your daughter’s Arm and no need to wake her unless there is a problem with her levels.

It is worth going in with a *list of questions*, and also ask if there is a contacts email so that you can ask questions in between appointments, especially about changes to insulin doses.

Let us know how you get on.


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## Laurajane38 (Sep 30, 2019)

Hi Juliet
Thanks for your reply that’s good advice I’ll try that next time - she’s gone to sleep on 6.6 I have her a biscuit and jelly baby but don’t think it was enough I’ll check again in a couple of hours for peace of mind and we may need to have a little fruit pastille party


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## Laurajane38 (Sep 30, 2019)

SB2015 said:


> Hi @Laurajane38
> 
> I am glad that things are beginning to settle down.  It is not surprising that you worry, especially at night, but even this will get easier. Some thoughts for your appointment tomorrow
> 
> ...




Im going to ask about the libre definitely it sounds so much easier than having to disturb her and I worry if I don’t test in the night thank you for the advice


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## Bronco Billy (Sep 30, 2019)

Hi Laura. I’m pleased to hear things are getting easier. It’s perfectly natural for parents to worry about their children, but we have more reasons to be concerned than the average parent, given the seriousness of type 1.  There will always be worries, but they become easier to deal with once experience allows you to think more rationally. I always worry when my two are out of sight, but there have been no disasters. I still worry, but know that it’s unlikely that something bad will happen. This knowledge helps me to be more relaxed about any concerns.

As a rule, we only correct for anything over 10 at night. You are already showing good judgement Six is a good number and wouldn’t need to be corrected, even during the day, but you are right to be concerned about BGs falling lower overnight. It’s possible your daughter is still in the honeymoon period where her pancreas will ‘wake up’ at night, causing levels to fall. If this is happening, levels will probably need tweeking as you suggest, but take the advice of your consultant. If she is in a honeymoon period, decisions will be more straightforward when it ends as you will know what you are working with.


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## TheClockworkDodo (Sep 30, 2019)

It's sensible to check a bit more over the first few weeks - as well as the honeymoon period, the insulin doses she's been put on will be a "best guess" and they are likely to need a bit of tweaking to get them right - after a while you'll feel confident to tweak them yourself whenever this needs to be done, but for now keep asking your diabetes team for advice about it.

The Libre is great for readings through the night if you can get one - you can scan her as many times as you want without disturbing her.  It's not completely reliable, so I still test to be sure if mine is reading very high or low, and I also still test before injecting.  But the arrows on it (showing which direction blood sugar's going) are really helpful.


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## Laurajane38 (Sep 30, 2019)

Bronco Billy said:


> Hi Laura. I’m pleased to hear things are getting easier. It’s perfectly natural for parents to worry about their children, but we have more reasons to be concerned than the average parent, given the seriousness of type 1.  There will always be worries, but they become easier to deal with once experience allows you to think more rationally. I always worry when my two are out of sight, but there have been no disasters. I still worry, but know that it’s unlikely that something bad will happen. This knowledge helps me to be more relaxed about any concerns.
> 
> As a rule, we only correct for anything over 10 at night. You are already showing good judgement Six is a good number and wouldn’t need to be corrected, even during the day, but you are right to be concerned about BGs falling lower overnight. It’s possible your daughter is still in the honeymoon period where her pancreas will ‘wake up’ at night, causing levels to fall. If this is happening, levels will probably need tweeking as you suggest, but take the advice of your consultant. If she is in a honeymoon period, decisions will be more straightforward when it ends as you will know what you are working with.




Thank you for that , the doctor did mention the honeymoon period , now I understand what she meant , I’ll have a good chat with the consultant tomorrow and see what she suggests but for this eve I think I’ll check on her and wake if necessary, I really hate waking her from a deep sleep , she’s always been a good sleeper and the last one to get up in the family so it’s really hard ! 
So much to think about , it’s literally become me this last week , I’ve gone from knowing nothing to wanting and needing to know everything it’s crazy
It’s nice to talk to people here though especially when I can’t sleep ! 
Thank you all ❤️


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## Fluffy unicorn (Oct 3, 2019)

Hi Laura. My 13 year old daughter was diagnosed type 1 2 months ago. It is all very hard and alot to take in. I'm still learning and worrying and my daughter is a trooper. We are all here if you want a chat. X


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## Laurajane38 (Oct 3, 2019)

Hiya 
It’s so very hard isn’t it ? 
You have to learn and take so much in, in such a short space of time and I literally worry ALL the time , you feel the same ? 
My daughter is taking it so well
13... that’s a difficult age to get to grips with it all isn’t it  bless her .... I just hope things get easier and the worry a little less xx


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## Stell (Oct 3, 2019)

Laurajane38 said:


> Hi
> I’m completely new to all of this my 6 year old daughter was diagnosed with type 1 Friday - it’s all so raw and scary still we are trying to get our heads around it all so any advice that anyone has would be VERY much appreciated x


Hi Laura. Be kind to yourselves. this is hard on families at first and it's not strange to feel numb, confused, in a fog. It does get easier and the help and technology available is amazing. Pace yourself. And all the very best.


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## Laurajane38 (Oct 3, 2019)

How do/did people find it working with a child with type 1 ? I’m back to work Monday after a couple of weeks off and I’m dreading it
Does anyone work full time / part time ? I work school hours but I’m worried what I’ll do in the school holidays 
But no point sitting at home overthinking everything everything has to be so thought out !


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## Fluffy unicorn (Oct 3, 2019)

I work 5 days a week and work 2 jobs at the mo until the 20th when I am staying as a carer working 45 hours a week. I know it's hard and you feel you need to put your life on hold but you need to tell yourself that life can't stop and that you will have to go back to so called normality some time and now would be best then your daughter can get used to that routine early. Xx


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## Stell (Oct 3, 2019)

Just try to get all the help you can. Family. friends.School holidays are tricky. Arrange activities for your daughter. You can be nearby reading a book etc. Make sure the people close to you are people you can trust. 
It will all be ok. You may have to decide what works best with full time part time work. The hospital team should come to the school to train up teachers and TAs. It will all be fine. it will all get easier.


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## Thebearcametoo (Oct 4, 2019)

You may need extra time off to begin with but once things settle you will be back to being able to work as normal. 

Don’t forget to apply for DLA - you can’t claim until 3 months post diagnosis but if you have it filled in and returned then the payment term starts from that date. We get mid level DLA. The diabetes nurse will give you a covering letter to support the application and there are good application notes online to help fill it in.


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## Laurajane38 (Oct 5, 2019)

Had our first lowest hypo today of 2.9 but my daughter had no symptoms didn’t tell me see it coming etc .... we only knew when we did our mid afternoon test 
Anyone else’s children experience hypos with no symptoms ?
I’m guessing she just doesn’t know how to explain especially only being on insulin 2 weeks it but she assures me she was fine and was happily playing Lego etc 
It’s so worrying as she doesn’t know how they feel yet


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## Bronco Billy (Oct 5, 2019)

I’m afraid this is one of the vagaries of type 1. My two have felt fine in the mid 2s, but have felt very weak in the low 4s. it can take time to develop hypo awareness, but it’s never guaranteed 100% of the time. All you can do is watch for the symptoms, particularly going pale, lack of concentration and lethargic movement.


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## Thebearcametoo (Oct 5, 2019)

Hypos are odd. Sometimes my daughter can feel one at 3.9 but not at 2.5 

Things you can look for are her looking very pale, an odd colour around her mouth, her going a bit vacant or sleepy, suddenly going cold, being very hungry, being grumpy. But sometimes even then no one can spot them which is why we test. If she has no hypo awareness and given her age then she should qualify for NHS funding for a Libre or some CGM so keep her diabetes team in the loop.


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## Laurajane38 (Oct 5, 2019)

Thebearcametoo said:


> Hypos are odd. Sometimes my daughter can feel one at 3.9 but not at 2.5
> 
> Things you can look for are her looking very pale, an odd colour around her mouth, her going a bit vacant or sleepy, suddenly going cold, being very hungry, being grumpy. But sometimes even then no one can spot them which is why we test. If she has no hypo awareness and given her age then she should qualify for NHS funding for a Libre or some CGM so keep her diabetes team in the loop.



That’s good to hear I’ll definitely look into that if she continues to have no hypo awareness, I’ll chat to her nurse next week
 I suppose to it’s all new to us too so we don’t really know what we are looking for ? Thank you for the tips I’ll look out for those signs 
Really appreciate all your advice 
Thank you x


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## Thebearcametoo (Oct 5, 2019)

This first few hypos were so scary. I remember it well. The good thing is that with treatment they bounce back really quickly. It may take you longer to get over it though.


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## TheClockworkDodo (Oct 5, 2019)

Other symptoms to look out for include suddenly getting very hot and sweaty, getting dizzy, shaking, and talking gibberish.  There's a thread about different hypo symptoms here which include a lot more, I think:  https://forum.diabetes.org.uk/boards/threads/what-are-your-hypo-symptoms.81992/

Everyone has different ones, and most of us have a range of them and don't always have the same ones each time we hypo, so it will take a while to work out which ones she gets.  Most of us find the ones we get when our blood sugar is plummeting are worse than the ones we get when it has gradually got lower, and it may well be that your daughter had only very gradually gone down to 2.9 today and she will notice that she is not feeling well if her blood sugar is dropping faster.


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## Laurajane38 (Oct 21, 2019)

Hi - we are struggling with giving nighttime insulin - we were told that the best place is top of buttock but my daughter absolutely hates it and we have tears every night - anyone else have same problem and do you give it anywhere else ? Help?!!! X


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## Bexlee (Oct 21, 2019)

I’m slightly older than your daughter by a fair few decades but I can’t inject in bottom tried once it hurt and I did t like it so I use the top of my thighs. Alternating left and right each night. It doesn’t hurt at all there - occasionally it smarts a little. The DSN said put arms by side and imagine you have hands in deep pockets inject anywhere in that area. Another suggested top is an ice cube to numb it a little. 

Hope you find something that works.


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## TheClockworkDodo (Oct 21, 2019)

Top of buttock works for me, but I use sides of thighs as well and occasionally abdomen.  Different sites work better for different people.  Have you seen this diagram of injection sites, @Laurajane38 ? 







If changing sites doesn't help, it could be the insulin to blame rather than the site - which basal is she on?  Some people find that some insulins sting.  If that's the problem it should be possible for her hospital team to change her to a different one.


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## Bronco Billy (Oct 21, 2019)

The top of the legs and the tummy are good alternatives.


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## Thebearcametoo (Oct 22, 2019)

My daughter hated injections in the bum as she couldn’t see and couldn’t control it. She does her basal in her thigh instead. We also moved it to the morning because it was much more difficult for her to do it when she was tired at the end of the day. If you’re going to move the time though work with your DSN as it takes a while to move it safely. We also moved from Lantus to Tresiba. 

Do keep talking to your team. We had an easy first couple of months and then it hit my daughter that this was long term and it started to get more difficult. We had a rough few months with her struggling with everything from finger pricks to injections but is now doing much better. She was diagnosed in March.


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## SB2015 (Oct 22, 2019)

Hi @Laurajane38 , I tried bum when on injections and it hurt lots.
I used to use top of left leg am , and abdomen during the day (easy access) , left leg pm.
I hope your daughter can sort out what works for her


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## everydayupsanddowns (Oct 22, 2019)

Hello @Laurajane38 

Sorry to hear about your daughter’s diagnosis. 

I’m another who used thighs as a site for long acting. I also found buttocks to be fine, but thigh was easier to access!


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