# Newly diagnosed son



## SunflowerMama

My son was diagnosed with type 1 on Monday (august 1st) in hospital. 

Last week, on Thursday, we went to our GP surgery because my son was drinking so much and peeing so often.  They suspected diabetes right away, did a urine and prick test that lined up with that theory leading them to do a blood test immediately..... Then told us the results would take a long time to return and sent us home with no advice or guidance of any sort. 

We were baffled and uninformed so waited.  Monday the GP (not the person we saw Thursday) received the results, called us in and said go to hospital straight away.  We clearly got the impression he did npt agree with us having been sent home 5 days earlier but didn't say so straight out. 

The hospital was able to diagnose my son in maybe just over an hour of us arriving there.   We were questioned a lot over what happened and every detail about our GP surgery experience and they will be investing that and advised me to submit my own complaint as that is the only way I would be able to keep informed over what happens with the GP surgery.  The hospital said the investigation would ensure this situation didn't happen to anyone else in the future. 

Our hospital experience was fantastic and the ongoing support is more than I expected and I am very grateful for that!  

My son is 14 and coping amazingly, certainly better than I am, and is only irritated we keep asking him how he feels. 

So, right now we are trying to get more comfortable with the changes and learn how his body reacts to pretty much everything. 

I have tried looking through the forum but it feels like so much is written in a secret language I don't know yet, even the newly diagnosed parts.  I think I won't read too much of that for now. 

Just wanted to say hi really.


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## Thebearcametoo

Hi and welcome. And yeah the GP should have sent you straight to hospital, that’s what happened with us. The paeds teams are good at giving information and also repeating it often enough that you will get the hang of it. The first few months are hard because of the amount of info you have to take on board and getting the hang of carb counting etc. You’ll be supported through it but we’re here too both to answer questions and offer you support. There should be a psychologist attached to his team and they are there for you and the whole family not just him.


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## SunflowerMama

Thebearcametoo said:


> Hi and welcome. And yeah the GP should have sent you straight to hospital, that’s what happened with us. The paeds teams are good at giving information and also repeating it often enough that you will get the hang of it. The first few months are hard because of the amount of info you have to take on board and getting the hang of carb counting etc. You’ll be supported through it but we’re here too both to answer questions and offer you support. There should be a psychologist attached to his team and they are there for you and the whole family not just him.


Thanks. 

Actually, I wondered exactly that.  We di have a psychologist on the team and he is the one we've seen the least of so far.  He talked to us a bit but was hours of everyone else talking.  I was wondering if he was just for my son or us as well.


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## Lily123

Welcome to the forum @SunflowerMama


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## Sally71

Your experience is sadly very similar to mine.  My daughter was 6 years old at diagnosis, when I rang the GP to ask for an appointment because I suspected diabetes, they said it wasn’t urgent and made an appointment for 2 days later.  Her decline had been fairly slow until that point so I just accepted it.  2 days later went to see doctor, he did urine dip which apparently was normal, and clearly didn’t believe me.  Luckily he had the sense to realise that ignoring the symptoms I described would mean that he wasn’t doing his job properly, so referred her for blood tests.  He said it had to be a fasting one, which is correct for diagnosing type 2 but not type 1, unfortunately I didn’t know enough about it to argue and when I couldn’t get an appointment for another 5 days I also didn’t realise how urgent it was, or I’d have stamped my feet a bit!  5 days later she was going downhill fast, barely eating anything and probably in the beginnings of DKA.  Had blood test, took her to school but she got sent home because she was so ill. Next morning GP surgery opened at 8am and I had the receptionist on the phone at 8.05 asking for us to come in at 11.  Longest 3 hours of my life... hubby had to carry her in to the surgery as by then she was too weak to even stand up never mind walk, doctor looked like he’d had the fright of his life, finger prick test was off the scale and urine test now full of sugar and ketones.  Off to hospital we went!

Our DSN said that sadly this is common with GPs, they base all their diabetes knowledge on type 2 as that is what they usually see and it is quite possible for a GP to go through their entire career without ever seeing a new case of type 1. They should have just done a finger prick and sent us straight to hospital.  DSN said they were trying to work with GPs to educate them on this aspect, sadly it seems 10 years later not much has changed 

I did find out later that there was another doctor at that practice who had previously worked with a paeds diabetes team, if only we’d had her that day things could have been so different!

Which makes me think, we have so many people on this forum who have been wrongly diagnosed as type 2 just because of their age (many GPs still believe that if you are over the age of about 25 you must be type 2 because that appears later in life.  Not always true, type 1 can appear at any age).  So why then do the same GPs not realise that if you are faced with a child with diabetes symptoms they are far more likely to be type 1 and that this situation is urgent and you haven’t got time to be faffing about with fasting blood tests?!  

Anyway I’m glad to say that once we got to hospital things got sorted pretty quickly, our paeds team are fab, daughter is now 16 and waiting for her GCSE results and deals with most diabetes-related things by herself now.  (Apart from ordering prescriptions and pump supplies, she’s quite happy to let me carry on doing that for her at the moment!). If you have any specific questions please do ask, we were all beginners once and nothing is too silly.  It’s tough at first and can be confusing but you’ll get the hang of it fairly quickly and it soon gets easier.  Good luck


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## SunflowerMama

Wow!  It's scary to hear this is a common occurrence with GPs! 

I have been worrying and wondering if we should move to another GP surgery, but at the same time live in am area where all surgeries are over subscribed. 

I think maybe I need to get the name of the woman we saw Thursday and make sure we never deal with her again.  And maybe the name of the doctor from Monday too whom I felt was very clear and did the right thing.


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## Sally71

I wouldn’t move to a different surgery, ours have been great for everything else.  Unfortunately at the time it just didn’t occur to me to make a complaint, and the GP concerned left the practice anyway a few months later.  If you want to make a complaint about your particular GP though, or try to educate them, then go for it.  Make sure they understand that if there is any possibility that they might be looking at type 1 diabetes and not type 2 (if it’s a child it’s far more likely to be type 1) then it needs to be treated as an emergency, undiagnosed type 1 can develop quite rapidly into DKA which is life threatening.  Our DSN said if we’d waited just 1 day longer our daughter would probably have gone into a coma and then she’d have been in intensive care


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## Thebearcametoo

SunflowerMama said:


> Thanks.
> 
> Actually, I wondered exactly that.  We di have a psychologist on the team and he is the one we've seen the least of so far.  He talked to us a bit but was hours of everyone else talking.  I was wondering if he was just for my son or us as well.


It can be hard to get an appointment as there’s often only one per hospital but if you feel the need to talk to someone who understands diabetes then do make an appointment. In the early months we were offered time at clinic if we needed it but our psychologist isn’t always at clinic so we’ve had some other appointments too. 

The diabetes will now be managed by the hospital team with the GP surgery just dealing with prescriptions. If you have any problems with prescriptions let your diabetes team know and they’ll chase it. We did have a follow up appointment with the GP a few months in just so they could check everything was ok but otherwise there’s no GP involved care with diabetes until they hit adulthood at which point our surgery does an annual check as well as the clinic’s annual check.


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## SunflowerMama

Sally71 said:


> I wouldn’t move to a different surgery, ours have been great for everything else.  Unfortunately at the time it just didn’t occur to me to make a complaint, and the GP concerned left the practice anyway a few months later.  If you want to make a complaint about your particular GP though, or try to educate them, then go for it.  Make sure they understand that if there is any possibility that they might be looking at type 1 diabetes and not type 2 (if it’s a child it’s far more likely to be type 1) then it needs to be treated as an emergency, undiagnosed type 1 can develop quite rapidly into DKA which is life threatening.  Our DSN said if we’d waited just 1 day longer our daughter would probably have gone into a coma and then she’d have been in intensive care


The hospital is investigating the GP surgery and said they will ensure this doesn't happen again to others there.  So I take that to mean they are doing the hard part and the educating. 

I have written my complaint, and while including the whys and what I learned from the hospital... Because the hospital is actively following this up I felt ok making it also about how we were treated, left uninformed and how we learned this was a risk the surgery shouldn't have taken with a child or anyone... How how we feel.


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## SunflowerMama

Thebearcametoo said:


> It can be hard to get an appointment as there’s often only one per hospital but if you feel the need to talk to someone who understands diabetes then do make an appointment. In the early months we were offered time at clinic if we needed it but our psychologist isn’t always at clinic so we’ve had some other appointments too.
> 
> The diabetes will now be managed by the hospital team with the GP surgery just dealing with prescriptions. If you have any problems with prescriptions let your diabetes team know and they’ll chase it. We did have a follow up appointment with the GP a few months in just so they could check everything was ok but otherwise there’s no GP involved care with diabetes until they hit adulthood at which point our surgery does an annual check as well as the clinic’s annual check.


We have our first clinic on the 16th.  I think you are right and it will be a few people we see but not necessarily all of them.  I feel weird talking about feelings face to face with people I don't know.


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## SB2015

I was misdiagnosed by my GP but got sorted in time.  He was an excellent GP for all other things, so stuck with him and just agreed not to discuss diabetes management.  Later I went in and did a training session for the Practice, we are a rare breed so many GPS don’t come across T1 that often.  So think a while before changing over.

I am very pleased that you now have the support that you need from the Paeds  team.  There is so much to take on board so quickly so it is no surprise that your head is swimming.  Has anyone recommended the book Type 1 Diabetes in Children Adolescents and young Adult by Ragnar Hanas.  A book with clear explanations which is regularly updated with the latest tech available to us.

Keep the questions coming as they arise.


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## Thebearcametoo

SunflowerMama said:


> We have our first clinic on the 16th.  I think you are right and it will be a few people we see but not necessarily all of them.  I feel weird talking about feelings face to face with people I don't know.


You can do a phone appointment if that’s easier for you. Or email.


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## SunflowerMama

SB2015 said:


> I was misdiagnosed by my GP but got sorted in time.  He was an excellent GP for all other things, so stuck with him and just agreed not to discuss diabetes management.  Later I went in and did a training session for the Practice, we are a rare breed so many GPS don’t come across T1 that often.  So think a while before changing over.
> 
> I am very pleased that you now have the support that you need from the Paeds  team.  There is so much to take on board so quickly so it is no surprise that your head is swimming.  Has anyone recommended the book Type 1 Diabetes in Children Adolescents and young Adult by Ragnar Hanas.  A book with clear explanations which is regularly updated with the latest tech available to us.
> 
> Keep the questions coming as they arise.


Thank you, I will look up that book.


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## SunflowerMama

My husband has taken our son to the dentist (he is in the process of having crowns done due to an accident). 

 I discovered I don't like my son off without me now, not even with my husband.


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## rebrascora

We all felt very vulnerable in the early days of being on insulin and it must be 10x worse being the parent of a child with Type 1, so I can totally understand how anxious you must feel when you are not with him. It will get easier as you get more confident of managing his diabetes and learning that there is a reasonable amount of time to deal with problems or correct mistakes and treat hypos. It is all incredibly new and scary at the moment but I can assure you it does get easier and you are always at the end of a phone if your son needs some support, I am sure.  Sending ((((HUGS))))


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## SunflowerMama

I sure hope by September I am ready to cope with him going to school!  The hospital team is handling the whole health care plan, sorting out everything on the school and are going to come visit the school (I think the diabetic dietician and maybe the nurse too). 

I also have to depend on my husband to be available to interact with the school both in person and should anything be needed as I work on another school.


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## Thebearcametoo

SunflowerMama said:


> My husband has taken our son to the dentist (he is in the process of having crowns done due to an accident).
> 
> I discovered I don't like my son off without me now, not even with my husband.


This is very normal. It will take a while for you to fell computable with him being out of your care. It’s good to practice and you’ll get more confident with letting other people take care of him. This is one benefit of the dexcom as I can see levels on my phone without having to bug him to test or anything.


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## SunflowerMama

Thebearcametoo said:


> This is very normal. It will take a while for you to fell computable with him being out of your care. It’s good to practice and you’ll get more confident with letting other people take care of him. This is one benefit of the dexcom as I can see levels on my phone without having to bug him to test or anything.


We've got the arm sensor so far and the Doctor said she felt the dexcom was best in the  future. I got the impression was was not the far future but not sure when she meant. 

At the moment, my son doesn't like the idea at all of wearing a device that he views as big.  I think he needs more information and to see one again. He hasn't seen one since he was about 8 and his then school friend got one, he must remember it as bigger than it is.


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## gll

SunflowerMama said:


> At the moment, my son doesn't like the idea at all of wearing a device that he views as big.  I think he needs more information and to see one again.


https://www.freestylelibre.co.uk/libre/
has pics and a video on the home page 

Edit: think i misread a bit there as he has the libre?  ignore me


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## helli

SunflowerMama said:


> We've got the arm sensor so far and the Doctor said she felt the dexcom was best in the future. I got the impression was was not the far future but not sure when she meant.


I assume you mean Libre for the "arm sensor". 
This is the most common one although Libre 3 has started to be seen occasionally and is much smaller - I think it is about the size of a penny rather than a 10p ... for those who remember what coins look like.
The Dexcom will be the Dexcom ONE which is the cheaper Dexcom version that they have released to compete with Libre. It does not have all the functionality of the G6 but, from what I can see, the main thing that is missing is the API which allows it to interface with the pump. I doubt your son is using a pump at the moment (most places they like you to be familiar with injections before moving to a pump so you are confident with the backup in case the pump fails) so the cheaper Dexcom ONE should be fine. Some of us use unofficial smart phone apps to read their CGMs, my understanding that these are limited due to the lack of the API to read it.  
I think another limitation of Dexcom ONE is that you cannot have a "follower app" so the option for a parent to see what is happening will not be available. 

I wonder if your son is thinking of an insulin pump as the big device? This is quite a bit larger than a sensor (although they are getting smaller too).

I recommend talking to your diabetes team (or DSN) and ask if you can see the devices that they are talking about or at least a picture if you are not seeing each other face to face,


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## Elbram

Yes that is horrendous. A urine and finger prick blood test would give you an immediate indication, and your son should have been admitted that same day. There are a couple of things you should be aware of from the outset. Children are much stronger than you think they will just accept it and get on with it. The one thing that is desperately lacking is information and support for parents. They will inevitably go  on the internet and read some horror stories, which does not help the situation. Your son will control diabetes, not the other way around. Diabetics can eat anything they want, just keep sugars and pop to a minimum. There is a reason why there are awards for people living with type 1 for 50, 60, 70 and 80 years - that is because they do.


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## helli

Elbram said:


> Your son will control diabetes


@Elbram your words are great 
My only concern is that part I have copied above. Trying to * control* diabetes will b a losing battle. With the tools we have to mimic the pancreas, perfection is not possible. There are so so many things that can affect our blood sugars. My T1 friends often suggest wearing the wrong socks can send out blood sugars awry.
This doesn't mean diabetes has to be nightmare that takes over our lives but trying to control it will.
I was diagnosed with Type 1 nearly 20 years ago. I live a very full life. I am very healthy (more so than most of my non diabetic friends), I have no complications. I *manage *my diabetes. The difference between manage and control is important to me. I maybe being overly pedantic but I always worry about people when they are newly diagnosed thinking they will always be in control and diabetes will never throw a spanner in the works. 
I think of my diabetes like a clingy toddler - always with me, often well behaved but can be very naughty, especially when I least expect it. And I'd never assume I could control a toddler.


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## SunflowerMama

Something I didn't think to mention is that my son is mildly dyslexic as well, so I worry about him handling it all at school.  Be can just read or see an instruction incorrectly sometimes.  There is a school nurse who could help but not sure he'd want to go there every single time he eats to have his math checked. 

I plan to itemize his lunches so he has a list and can add up just the items he wants to eat at any given time.


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## Thebearcametoo

Even if all the maths is right all the time sometimes things just don’t work as we expect them to and all of us make mistakes sometimes. Sometimes there will be a hypo that takes multiple treatments to correct and then you end up with a bounce back hyper. Sometimes you forget to bolus with a meal. Being able to go with the flow will help. Hypos need urgent attention. Hypers can probably wait until the next meal (unless you know you missed a bolus or there are ketones involved). Over time you’ll see the patterns of when boluses need changing as he grows etc. He’ll get the hang of it and you’ll get more confident in there being a team of people around him.


When he’s at school his friends and those around him will spot the symptoms of a hypo and nudge him to get himself sorted. If he can manage his meals himself great. As long as there’s an option for somewhere he can go if he’s not feeling well or dealing with a stubborn hypo and no pressure to just get on with his day he’ll be fine. The diabetes team will liaise with school and get a plan in place.


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## SB2015

SunflowerMama said:


> I plan to itemize his lunches so he has a list and can add up just the items he wants to eat at any given time


That sounds like a really good plan for lunches.

I can understand that he will not want to have to go to the nurse every lunchtime.  Many of the glucose meters include a calculation of the dose needed once the BG is done and the carbs are input. How does he cope with reading off the values and dialling this up on a pen? Not all of those with dyslexia struggle with numbers as well.


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## SunflowerMama

SB2015 said:


> That sounds like a really good plan for lunches.
> 
> I can understand that he will not want to have to go to the nurse every lunchtime.  Many of the glucose meters include a calculation of the dose needed once the BG is done and the carbs are input. How does he cope with reading off the values and dialling this up on a pen? Not all of those with dyslexia struggle with numbers as well.


The issue is more figuring out the carbs.  He definitely can't figure out the carbs if the package isn't exact.  He ia mostly ok adding them up.  I need to make sure he always writes it down as his phonological memory makes him forget or scramble them. 

Then he has an app that he enters rhe carbs and blood glucose and tells him the insulin.  He does fine with the injector.


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## Elbram

helli said:


> I was diagnosed with Type 1 nearly 20 years ago. I live a very full life. I am very healthy (more so than most of my non diabetic friends), I have no complications. I *manage *my diabetes. The difference between manage and control is important to me.


@helli Hi, yes I agree, manage is a better word. Keep up the good health!


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## SB2015

SunflowerMama said:


> The issue is more figuring out the carbs.  He definitely can't figure out the carbs if the package isn't exact.  He ia mostly ok adding them up.  I need to make sure he always writes it down as his phonological memory makes him forget or scramble them.
> 
> Then he has an app that he enters rhe carbs and blood glucose and tells him the insulin.  He does fine with the injector.


The packaging can be a bit of nightmare for all of us at times, so your plan of a list from which he adds up what he eats sounds great. Then if he is happy using the app that should be straightforward As he is already doing so well with the injections.

When the DSN works with you to set up his plan it will help you al to be clear what the plan is for dealing with hypos and hyperspace, which we all have.  As @helli says we just manage our diabetes as best we can, and get more confident to do so.  There will still be hiccups but that is what the plan is there for.

Keep any questions coming. Plenty of help available on here.


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## SunflowerMama

SB2015 said:


> The packaging can be a bit of nightmare for all of us at times, so your plan of a list from which he adds up what he eats sounds great. Then if he is happy using the app that should be straightforward As he is already doing so well with the injections.
> 
> When the DSN works with you to set up his plan it will help you al to be clear what the plan is for dealing with hypos and hyperspace, which we all have.  As @helli says we just manage our diabetes as best we can, and get more confident to do so.  There will still be hiccups but that is what the plan is there for.
> 
> Keep any questions coming. Plenty of help available on here.


We are not all the way to managed yet... Ot at least when I think managed I think of his glucose being around the ideal range. 

Right now they are still tinkering with dosages and said that his glucose levels need to come down slowly else he will feel ill.  We have made it from mostly in the 20s to yesterday being mostly in the teens except for after the sorbet it went to 23.

The dietician said it is trial and error to see how his body reacts to different foods and that no two people are the same. He did handle pizza well the other day, which wad a relief, as its a teenage stapple. 

But, I feel like there is a lot we don't know yet because we don't know his body and I don't feel like we should be trying to cram all of "normal life" straight back in... That he needs to learn some better things and mesh those together with some old things.


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## SB2015

SunflowerMama said:


> We are not all the way to managed yet... Ot at least when I think managed I think of his glucose being around the ideal range.
> 
> Right now they are still tinkering with dosages and said that his glucose levels need to come down slowly else he will feel ill.  We have made it from mostly in the 20s to yesterday being mostly in the teens except for after the sorbet it went to 23.
> 
> The dietician said it is trial and error to see how his body reacts to different foods and that no two people are the same. He did handle pizza well the other day, which wad a relief, as its a teenage stapple.
> 
> But, I feel like there is a lot we don't know yet because we don't know his body and I don't feel like we should be trying to cram all of "normal life" straight back in... That he needs to learn some better things and mesh those together with some old things.


Just take things step by step.  You have the support around you, so make good use of this.  They are always keen to bring levels down gradually.  Great to hear that he managed a pizza.  

You will find a ‘new normal’ which will gradually include more of what he was doing before.  It took me two years to be brave enough to go back to swimming as I was worried about spotting hypos. 

Keep in touch.


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## SunflowerMama

How does heat affect type 1, or is that individual?


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## Inka

SunflowerMama said:


> How does heat affect type 1, or is that individual?



It’s individual but it can cause more hypos as the insulin can be absorbed faster. I’ve had a pig of a time with the heat and control this year. Sometimes heat can also cause high sugars.


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## SunflowerMama

Inka said:


> It’s individual but it can cause more hypos as the insulin can be absorbed faster. I’ve had a pig of a time with the heat and control this year. Sometimes heat can also cause high sugars.


Its a bit daunting since he is still finding his way to normal levels and I wonder how the heat will confuse that. So far his levels seem determined to stay in the teens.  His novorapid was changed Friday and tresiba yesterday.  They want him closer to normal this week.


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## SunflowerMama

So, the insulin, more the tresiba, is still getting tweaked to bring down my son's overall blood sugar.  Today we had nothing over 14 and two 8s for the first time. 

It getting lower is causing me a lot of anxiety though even though I know what the healthier range is and why its the goal. 

I worry a lot about lows and what will happen. Also worry about them potentially happening at night despite the sensor being connected to the app and it having an alarm. 

I changed my notification sound for that to an entire song so it won't be possible to sleep through.  I also have a weird condition called exploding head syndrome (its weird google it).  The short is my brain makes me think I hear sounds that aren't real and they wake me up as they sound like they are next to my head. Very common sounds for me are phone noises, beeps and 1 second voices.  Sooooo couldn't have my notification be a beep else stress will make me hear it often.  A song is too long.


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## Thebearcametoo

The first hypo will be stressful but you soon get used to it. Just try to be patient while it’s happening. 

I get woken by noises that aren’t there sometimes too so I understand. As you say changing the alarm to something that you can recognise is a good idea.


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## SunflowerMama

He had his  first  low this morning,  luckily just before 7 and not in the middle  if the night.   Wasn't scary after all and he said  he felt fine.   

I was surprised how fast that lift drink worked,  then we followed ot up,  as we were told,  with a small  carb snack.   Then his libre wouldn't scan for 10 minutes so we did a prick instead. 

I looked online and it said it can give that  message  for  a few reasons which made sense.   Has been working  since.


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## SunflowerMama

New question: we were told to get medical  jewelry.   My son hates the idea but  we chose a necklace  because  it is more hidden.   Other than the obvious condition...  What do we have written on it?


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## Inka

SunflowerMama said:


> New question: we were told to get medical  jewelry.   My son hates the idea but  we chose a necklace  because  it is more hidden.   Other than the obvious condition...  What do we have written on it?


 
I have a MedicAlert bracelet. I’ve had it for years, and I think they suggested the words to write. MedicAlert also keep records with additional information.

My bracelet says “Type 1 Diabetic on insulin via pump”. It previously said similar but in more words but they amended it when I had to add another medical condition. It then has the MedicAlert telephone number.


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## SunflowerMama

Inka said:


> I have a MedicAlert bracelet. I’ve had it for years, and I think they suggested the words to write. MedicAlert also keep records with additional information.
> 
> My bracelet says “Type 1 Diabetic on insulin via pump”. It previously said similar but in more words but they amended it when I had to add another medical condition. It then has the MedicAlert telephone number.


Is that a specific company then?   I think where we looked was different.


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## Thebearcametoo

We have name, type 1 and a contact number for us

There’s an option on phones to add emergency info too either in the lock screen or view *emergency* check his particular phone for specifics. 

We have dog tags which are apparently appropriately cool and also some silicone wrist bands where you can add a metal piece with the details. 

If he hangs out with particular friends it’s worth making sure they have your phone number too


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## helli

SunflowerMama said:


> Then his libre wouldn't scan for 10 minutes so we did a prick instead.


The advice I have been given is to *always* test Libre highs and lows with finger pricks before treating (unless you are obviously feeling hypo) as CGMs are calibrated for "normal" levels (between about 4 and 9). 
In addition *always* test hypo recovery with finger pricks. The reason for this is that the interstitial fluid which CGMs use to calculate the readings are 10 to 15 minutes behind finger pricks. Libre attempts to predict the current value by extrapolating the trend of the graph. This works well unless the trend changes in that 10 to 15 minutes such as when recovering from a hypo treated with fast acting carbs. So Libre may well report a deeper hypo after you have recovered and tempt you to over treat a hypo. The "rescan in 10 minutes" error seems to be related to Libre detecting that your levels are changing quickly so Libre cannot calculate the reading.


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## SunflowerMama

helli said:


> The advice I have been given is to *always* test Libre highs and lows with finger pricks before treating (unless you are obviously feeling hypo) as CGMs are calibrated for "normal" levels (between about 4 and 9).
> In addition *always* test hypo recovery with finger pricks. The reason for this is that the interstitial fluid which CGMs use to calculate the readings are 10 to 15 minutes behind finger pricks. Libre attempts to predict the current value by extrapolating the trend of the graph. This works well unless the trend changes in that 10 to 15 minutes such as when recovering from a hypo treated with fast acting carbs. So Libre may well report a deeper hypo after you have recovered and tempt you to over treat a hypo. The "rescan in 10 minutes" error seems to be related to Libre detecting that your levels are changing quickly so Libre cannot calculate the reading.


That sounds  like good advice to  do a finger  prick as well.   

Literally while writing he had a puzzling hypo and I did his finger prick.


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## SunflowerMama

I suspect my son  threw away more of his supper (carbs-wise)  than  he thought  he did  and hadn't mentioned  it. 

The prick  said 5 so he had a biscuit  and  we waited and  its going up so  he is having a snack as well now as he has turned  hungry.


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## rebrascora

You do know that a hypo is below 4 don't you and that a 5 is a good reading. Having a biscuit when my levels were 5 without having insulin for it would result in my levels going up to 8 or higher, depending upon the biscuit, let alone having a snack on top of the biscuit.


----------



## SunflowerMama

rebrascora said:


> You do know that a hypo is below 4 don't you and that a 5 is a good reading. Having a biscuit when my levels were 5 without having insulin for it would result in my levels going up to 8 or higher, depending upon the biscuit, let alone having a snack on top of the biscuit.


We were told to treat a hypo if it goes  below 4.5.  It was 4.3 on sensor and after 5 on prick.   As I suspected it was  because  he  threw  some supper away he had a small biscuit.   The snack  after was with insulin. 

I didn't  provide  enough details before.


----------



## SunflowerMama

I can't  find an edit.   Biscuit  brought  him to 6.4.


----------



## SunflowerMama

At our  appointment on Tuesday,  they warned us now that the insulin was keeping my son more in the green range his pancreas may step  up a bit now that the job  is easier.   I think that might be  happening as he has had more lows that don't  make sense. 

Yesterday's low was after supper but  the more I think  about it the more  I don't  think it was the tiny bit of food he threw  away.   According  to  his pattern I think  his levels  should have still gone up just a touch less,  but  instead they went down.   I  also rechecked  the food carbs and insulin log to make sure they were  correct. 

During  the night and early this  morning  its been weird too. 

Will speak to the diabetic nurse later and see what  she thinks.


----------



## SunflowerMama

New question  here somewhere. 

My son  has  had several  lows  lately and has started  to feel them now that  his range is much more in the 5-10 they said  they wanted. 

Its before  bed and his reading  is 8.3 with horizontal arrow.   He said he wanted  a biscuit (no insulin)  so he doesn't go low at night.   I said  no to him as that isn't something we have  been  told by the diabetic team that we could/should  do.  We were only told he could  have bread or a biscuit 15 minutes  after a low and the fast acting treatment. So,  I think  I will call tomorrow and ask the on call person. 

What  do you all do?   Do you have  no insulin snacks  before  bed?


----------



## SunflowerMama

On a separate note,  received a written  response back  to  my complaint about how my son was not referred to the hospital on day one when they suspected diabetes (as told,  I think,  iny first post in this thread). 

They were honest about  some things and not about others.   I left  a message on voicemail  wanting  to address it but  they were  obviously not there.   Then was able to talk to someone  on the diabetic team and they are going to address  the letter on my behalf  so I have  sent them a copy. 

My emotions had managed to settled  a bit  in the ladt 2-3 days,  from what they were,  and now the letter  has just made  me feel like I am starting  all over  again and that "stuff",  in general,  just feels hard to cope  with  or overwhelming again. 

On top of that we had  problems  with  the sensor and app today (hopefully costumer support has solved it as its not reoccurred since),  and the finger  prick glucose gadget set off beeping  for no reason  we could understand and that all set me more on edge  and worrying. 

I feel a mess again.


----------



## Thebearcametoo

We wouldn’t give a snack without insulin at 8+ BG. If it was under 5 then we would. 


It’ll take a while to get over the initial stresses and you’ll cycle through the feelings while you process. Feeling stressed about the current management will also bring it back too. The first few moths were very hard for me and us as a family trying to adapt to everything. It does settle. I promise.


----------



## trophywench

A lot of blood sugar monitors (ie the ones you need a drop of blood and a testing strip for) do beep/buzz 10-ish minutes after you do a test and result was low, on the basis you should have treated the hypo by then - however even if you immediately consumed the hypo remedy, 10 minutes is rarely quite long enough for those carbs to filter through to your blood, so 15 minutes "ish" after eating/drinking whatever it was, is better.  Please don't panic if sonny's bloodstream doesn't instantly respond! - just means he's pretty normal really!


----------



## SunflowerMama

I have yet to ask the diabetic nurse,  which I will Tuesday.   But was wondering  what other people's experience is. 

My son currently  uses novorapid.   The nurse had said if this one wasn't suiting my son's lifestyle there was another option  that didn't  require  injecting in advance... I forget what that one is called! 

Do you know what that one is like?   My son  immediately liked the idea of not having  to inject in advance and then wait to eat. 

I,  however,  wonder how a faster  insulin  would  work  on some food types.   For example,  this week my son had pasta for  the first  time.   He injected 15  minutes  in advance because  it was high carbs but then it took  so long  to digest he ended  up with the insulin working too fast and getting a low blood sugar.   So,  that's  how his body responds  to that.   We were told to try injecting right  at mealtime next time he has  pasta. 

But then there  are things  like peaches that go way faster than the insulin and his levels go higher. 

Are there  pros and cons  to  changing the insulin type?   I worry that an even  faster insulin would  make a mess of eating pasta,  for example. 

Obviously,  I lack information in this area.


----------



## Thebearcametoo

All insulin will need a bit of jiggling around with when to dose according got certain foods or time so day. I suspect the one your nurse is talking about is fiasp which has a slightly faster profile. 

For things like pasta we sometimes split the dose (easier to do on a pump) or make sure it’s a meal paired with something fast for dessert. With novorapid we’ve always dosed at meal times as waiting was too complicated with a kid. As long as he returns to target after 4 hours or so the insulin is doing his job. Ideally yes you keep the BG within target as much as possible but if you get a spike because of eating that resolves it’s fine.


----------



## SunflowerMama

Looking at spikes...  Looks like  when that happens  he goes up by about  6 then within 4 hours comes down by about 4 leaving him thereabouts at 10ish.


----------



## Inka

Hi @SunflowerMama You could try splitting the bolus for pasta if your son doesn’t mind two injections. You keep the same amount of insulin but take some before the meal and the rest afterwards at a time that works for his blood sugar.

I guess the insulin the DSN referred to was Fiasp. I’d never use it personally but some people here use it and are happy with it, eg @helli who’s worked out ways to incorporate its idiosyncrasies into her regime. There are also other bolus insulins eg Humalog. Some people find Humalog works better for them than Novorapid - or vice versa. 

Interestingly, both Novorapid and Humalog were initially promoted as insulins you could inject right before eating - that was their selling point. They’re all ‘the best’ when they first come out   

I find I can inject Humalog right before my evening meal, but need more time for breakfast and lunch. There is no perfect insulin IMO, and even if there was we’d still be dealing with the other 42+ factors that affect blood sugar. That’s the biggest thing that I had to get my head round as a perfectionist: you can do everything absolutely right, and still get some results that aren’t as good as you hoped. I genuinely thought that if I followed my consultant’s instructions to the letter everything would be perfect, and that if I didn’t get perfect results this was a failing on my part. It wasn’t, of course. We can only do our best.


----------



## helli

SunflowerMama said:


> My son currently uses novorapid. The nurse had said if this one wasn't suiting my son's lifestyle there was another option that didn't require injecting in advance... I forget what that one is called!


I use Fiasp.
It suits me and, usually, doesn't need to pre-bolus as far ahead as NovaRapid. But ...
The speed at which it works for me is noticeably dependent on my blood sugar. If my levels are "mid range" (high 5s and 6s), I can inject as I start eating. If they are lower, I the insulin would start working too soon so I tend to keep an eye on my level and inject as soon as I see them rising. If my levels are in double figures, it can feel as if I am injecting water until suddenly, an hour later, whoosh, it works.

I am a sample of one and we are all different but my experience suggests Fiasp needs more thought that NovaRapid.


----------



## SunflowerMama

Makes  me think  we need  a lot more  time than 3 weeks to decide on changing.   A lot  more  learning  to do on body reactions. 

I find myself  obsessed,  or worried,  abouty son falling in the range the nurse said,  5-10.   It seems like afternoon snacks and supper is where they are most likely to go wrong.... Wrong  as in higher up to 13ish.  But very thankful  it rarely  goes higher anymore like when we started!  I find myself  worrying about  long term consequences even if its fluctuations in the day not a constant  high.


----------



## Thebearcametoo

SunflowerMama said:


> Makes  me think  we need  a lot more  time than 3 weeks to decide on changing.   A lot  more  learning  to do on body reactions.
> 
> I find myself  obsessed,  or worried,  abouty son falling in the range the nurse said,  5-10.   It seems like afternoon snacks and supper is where they are most likely to go wrong.... Wrong  as in higher up to 13ish.  But very thankful  it rarely  goes higher anymore like when we started!  I find myself  worrying about  long term consequences even if its fluctuations in the day not a constant  high.


It sounds like you’re doing really well. 

We’ve had times where my kid’s been higher than we’d like for weeks on end but always had good HBA1C which is the indication of long term control. Don’t worry about sometimes going high. Clinic will assess the numbers over time and give you help in changing ratios as needed and you’ll learn when to do it yourself in between clinics. You’re still in really early days.


----------



## SunflowerMama

What is HBA1C?


----------



## rebrascora

SunflowerMama said:


> Makes me think we need a lot more time than 3 weeks to decide on changing. A lot more learning to do on body reactions.


I think that is very wise!

Like @helli I find Fiasp is a bit faster than NovoRapid but I still need to prebolus most of the time.... at breakfast I need 45mins prebolus time with Fiasp (it was 75 mins with NR) even if I wake up mid range (5s and 6s) and inject immediately. I then need just 15-20 mins at lunch and evening meal (as oppose to 20-30 mins with NR) so not hugely quicker and certainly still need to prebolus, so don't take everything the nurse tells you at face value, we are all different. Like @helli I find that if my levels are above range, Fiasp is like water and I usually find it takes 2+ hours to come down and I often have to stack insulin corrections to bring it down, which is very much frowned upon by DSNs but necessary to manage my levels with Fiasp. I think part of my problem is that I am very fast to digest carbs but slow to absorb insulin. I find that I need to keep my levels below 8 as much as is possible by injecting corrections at 8 or mid 7s when it is rising, in order for Fiasp to be effective for me, so I have to be quite proactive and confident with it. 
I would stick with the NR for now and learn how your son's body responds to different scenarios with that. To me NR is more predictable and consistent even if it is a bit sluggish.


----------



## Inka

SunflowerMama said:


> What is HBA1C?



The blood test that’s done to give an idea of blood sugars over the previous three months.

https://www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/testing-blood-glucose#hb

“A _HbA1c test is usually done either at the clinic or before your child’s appointment. This blood test measures diabetes control over a period of two to three months. It is measured in millimoles per mol (mmol/mol).

The recommended level for children is generally 48mmol/mol, but targets are individual and your diabetes team may suggest a different target for your child.”_


----------



## SunflowerMama

That's  very interesting.   My son  definitely doesn't  take  that long to absorb insulin,  but I find he isn't  consistent either the standard 15 minutes is mostly right except. 

Pasta is very slow though,  but  the pizza  we were warned about has so far  been  ok even injected in one go not  two.


----------



## SunflowerMama

Inka said:


> The blood test that’s done to give an idea of blood sugars over the previous three months.
> 
> https://www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/testing-blood-glucose#hb
> 
> “A _HbA1c test is usually done either at the clinic or before your child’s appointment. This blood test measures diabetes control over a period of two to three months. It is measured in millimoles per mol (mmol/mol).
> 
> The recommended level for children is generally 48mmol/mol, but targets are individual and your diabetes team may suggest a different target for your child.”_


Ah,  so something  he will have regularly at appointments once he is at 3 monthly  ones then


----------



## trophywench

SunflowerMama said:


> Ah,  so something  he will have regularly at appointments once he is at 3 monthly  ones then


For the rest of his life except not every 3 months, after some time.


----------



## JJay

A lot can depend on what sauce you put with the pasta. More fat = slower BG rise.


----------



## SB2015

Good morning @SunflowerMama and well done, it sounds like you are getting to grips with things.

I would suggest sticking with the same insulin for now and finding out how that one works.  Things like pasta and pizza can be a bit of challenge, and I found the best that I could do was to split my dose, doing half before I ate, and the other half at the end of the meal, although all too often I forgot the second half.  This is easier on a pump as you can ask it to do the split dose for you.

If I was 8 at bedtime I would not be eating a snack without insulin, as that would take me out of range.  I would happily be on 6 so long as my sensor was level. I found it helpful to make a note of what I had eaten when levels did weird things just in case there was a pattern.  Having said that in the early stages once things have settled down a bit, as your DSN has said the remaining Beta cells may start to deliver some insulin again, without warning so that can cause unexplained hypos, which makes pattern spotting more difficult.  This is know as the ‘honeymoon period’. I just made sure that I had a stash of jelly babies by the bed for any hypos in the night.

Each day each of us just does the best that we can with our levels, as our diabetes has to fit around life.  It does get easier and more predictable.   Just keep the questions coming.


----------



## SunflowerMama

Called  Abbott end of last  week  as it kept dropping the sensor connection (did that with the previous sensor too but my son didn't realize  he needed  to mention it).   Woke this morning to find it didn't  record  all night as it dropped the connection again.  They are going to send  a replacement. 

Meanwhile will swap it with our one remaining sensor...  But worries me that now two seemed to be faulty and I haven't another back up. 

I will go into the surgery  today  and request another,  they STILL haven't sorted  my proxy account  so I can order  my son's prescriptions without  having to go all the way there.


----------



## helli

SunflowerMama said:


> Show ignored contentAh,  so something  he will have regularly at appointments once he is at 3 monthly  ones then


It varies.
Typically we have appointments every 6 or 12 months when our HbA1C and other blood tests are discussed.
Occasionally we get them at 3 months but this is rare - you are keeping a close eye on your son with his Libre and finger pricks.

I think for people with type 2, the HbA1C is more important, especially as they are not usually testing their blood sugars every day.


----------



## Thebearcametoo

SunflowerMama said:


> Called  Abbott end of last  week  as it kept dropping the sensor connection (did that with the previous sensor too but my son didn't realize  he needed  to mention it).   Woke this morning to find it didn't  record  all night as it dropped the connection again.  They are going to send  a replacement.
> 
> Meanwhile will swap it with our one remaining sensor...  But worries me that now two seemed to be faulty and I haven't another back up.
> 
> I will go into the surgery  today  and request another,  they STILL haven't sorted  my proxy account  so I can order  my son's prescriptions without  having to go all the way there.


It’s worth checking the placement of sensors making sure it’s on a fleshy bit and keeping well hydrated. If there’s not enough fluid getting to the sensor they stop working. But yes sometimes you get faulty ones. And sometimes different placements suit different people so if he’s using it on his arm and it’s not working well then maybe try abdomen and vice versa.


----------



## SunflowerMama

Thebearcametoo said:


> It’s worth checking the placement of sensors making sure it’s on a fleshy bit and keeping well hydrated. If there’s not enough fluid getting to the sensor they stop working. But yes sometimes you get faulty ones. And sometimes different placements suit different people so if he’s using it on his arm and it’s not working well then maybe try abdomen and vice versa.


That's  good  info.   My son lost a lot of weight (that we didn't  notice as he is slender  naturally anyway) which is likely from the diabetes.  He is gaining ot back now. 

He really doesn't have much fat anyway.   His abs are tight  like a drum so that wouldn't be a good place for  him. 

I am about  to place his next  one so will try to find the best place on his arm.


----------



## trophywench

I wouldn't recommend sticking a Libre sensor anywhere else, especially with a newly diagnosed child, for the simple reasons that a)  I have absolutely no idea whatsoever about treating T1 in children and b) because it is only licensed for use on the arm hence if you need one replaced and say it wasn't on the arm, Abbott could legitimately refuse to replace it should it malfunction.  At the very LEAST - discuss with his hospital team before venturing elsewhere.

When you change a sensor, do you choose the other arm every time so the arms get a fortnights rest between them?

If the GP hasn't put all his 'stuff' on a repeat prescription - ask them to.  Then you can order whatever he needs via the NHS App.  There is no cure for Type 1, so it's ridiculous that they haven't!


----------



## trophywench

Have you done the Abbott Academy videos?


----------



## Thebearcametoo

trophywench said:


> I wouldn't recommend sticking a Libre sensor anywhere else, especially with a newly diagnosed child, for the simple reasons that a)  I have absolutely no idea whatsoever about treating T1 in children and b) because it is only licensed for use on the arm hence if you need one replaced and say it wasn't on the arm, Abbott could legitimately refuse to replace it should it malfunction.  At the very LEAST - discuss with his hospital team before venturing elsewhere.
> 
> When you change a sensor, do you choose the other arm every time so the arms get a fortnights rest between them?
> 
> If the GP hasn't put all his 'stuff' on a repeat prescription - ask them to.  Then you can order whatever he needs via the NHS App.  There is no cure for Type 1, so it's ridiculous that they haven't!


My suggestion was because that was suggested to us by our diabetes team and vice versa for dexcom.


----------



## SunflowerMama

I have called  the surgery  and  complained this morning  and they have sorted the prescribing out within half am hour. 

Was ridiculous  though.   The lady  I spoke to  said oh we don't do anything with proxy access and the app.   I said I have already  been told that and  sent elsewhere just to be sent  right back.   Last  time  found someone there who knows so yes you do. She  had to go away to figure it out  but  it has since popped up on the app. 

The first two sensors he had on the same arm but slightly  over from each  other.   This new one we put on the opposite arm. 

I did  not know there was an Abbott academy,  I will look through  their page. 

We were given instruction by the diabetic nurse and follow the sensor  instructions to reassure us we remember how it goes.


----------



## SB2015

Try this link.  





						FreeStyle Progress - Abbott
					

Welcome to FreeStyle Progress. Log in or Register as a person with diabetes or a healthcare provider to start taking positive steps towards managing diabetes.




					progress.freestylediabetes.co.uk
				




They have excellent raining sessions on a variety of topics.


----------



## trophywench

Aaaargghh !!  The Libre videos are REALLY helpful!


----------



## SB2015

trophywench said:


> Aaaargghh !!  The Libre videos are REALLY helpful!


Oops!!  I could done with some raining sessions recently.


----------



## trophywench

We had one (a raining session) just as we came out of Tescos a couple of hours ago - not as heavy as the one we had whilst going into Asda last Thursday up near Hull.  Neither lasted anywhere near long enough to do anyone or anything any good .........


----------



## grovesy

We have had a few really heavy showers here in the last few weeks, but saw a post from someone 15 miles a way who have still not had rain.


----------



## SunflowerMama

We have has raining sessions yesterday but for some  reason  it never waters my hanging  basket.


----------



## SB2015

SunflowerMama said:


> We have has raining sessions yesterday but for some  reason  it never waters my hanging  basket.


Enjoy the cooler weather.


----------



## SunflowerMama

Goodness!   We made Kool aid and boy  did it take us ages to  figure  out the carbs so my son can then pour some  and calculate. 

I vote we never make kool aid again!


----------



## Inka

Yep @SunflowerMama Type 1 is endless torture by algebra   You’ll be doing calculations in your sleep!


----------



## SunflowerMama

Inka said:


> Yep @SunflowerMama Type 1 is endless torture by algebra   You’ll be doing calculations in your sleep!


I absolutely despise math!  If possible I avoid it at all costs.   So extra torture.


----------



## SB2015

SunflowerMama said:


> I absolutely despise math!  If possible I avoid it at all costs.   So extra torture.


Think of it as some good homework for you and your child (from a very enthusiastic retired Maths teacher)
I used to get my classes to work out my carbs and my insulin doses before lunch.  (I didn’t always take their answer, and we had some good examples to use for How do I know that this can’t be right)

You will be a (necessary) convert to this lovely subject.


----------



## helli

SunflowerMama said:


> I absolutely despise math!  If possible I avoid it at all costs.   So extra torture.


I agree with @Inka that it is a great way for your son to learn maths and take some control of his diabetes management. 

A friend of mine is a math tutor and gets very frustrated by parents (unfortunately, usually mothers) telling their children (usually daughters) that math is difficult so the kids will just give up before they start. 
Earlier this year, a government advisor who I think is a head teacher said something about girls not liking the "hard maths" of physics. As a female engineer who (luckily) loved maths, I get very frustrated by the idea that because someone else finds something difficult others shouldn't bother. 

Sorry, I didn't mean to start a rant. I realise not everyone is a maths geek and it is challenging for some. I hope the diabetes is something that encourages your son to master it.


----------



## SunflowerMama

helli said:


> I agree with @Inka that it is a great way for your son to learn maths and take some control of his diabetes management.
> 
> A friend of mine is a math tutor and gets very frustrated by parents (unfortunately, usually mothers) telling their children (usually daughters) that math is difficult so the kids will just give up before they start.
> Earlier this year, a government advisor who I think is a head teacher said something about girls not liking the "hard maths" of physics. As a female engineer who (luckily) loved maths, I get very frustrated by the idea that because someone else finds something difficult others shouldn't bother.
> 
> Sorry, I didn't mean to start a rant. I realise not everyone is a maths geek and it is challenging for some. I hope the diabetes is something that encourages your son to master it.


I have another child and she loves math,  sometimes  I wonder  if she really is mine!   She is currently studying A levels of chemistry,  biology and math. 

My son though,  is also not a fan of math.   But  I think the struggle  is more the remembering the equations  to calculate carbs rather  than how to do math.


----------



## notmez

SunflowerMama said:


> remembering the equations  to calculate carbs rather  than how to do math.


Cheat sheets. Get the information formatted small enough that you can fit it on a credit card size bit of paper. 

Print it out to fit that size and keep a few of them all over the place.  If you get them laminated they'll last longer. 

Get your son to keep one in a wallet. One in a lunch box. One in a bag. Magnet to the fridge. One on the dinner table. 

I used to teach secondary school ages and everyone loved my revision cheat sheets and card decks. This is the same sort of thing. The important information is always to hand.


----------



## SunflowerMama

I also work in a school  and have my own  laminator.


----------



## helli

SunflowerMama said:


> I also work in a school  and have my own  laminator.


I am  incredibly jealous of you and your laminator.
I think if I had one, my whole house (including my boyfriend) would be laminated.


----------



## SunflowerMama

helli said:


> I am  incredibly jealous of you and your laminator.
> I think if I had one, my whole house (including my boyfriend) would be laminated.


Admittedly,  I am obsessed with  quality  lamination.  I work in a sen school and we use communication cards a lot.   I can't  stand the ends  getting frayed.   So bought my own  with  higher quality  sheets.   Huge difference.


----------



## Leadinglights

SunflowerMama said:


> Admittedly,  I am obsessed with  quality  lamination.  I work in a sen school and we use communication cards a lot.   I can't  stand the ends  getting frayed.   So bought my own  with  higher quality  sheets.   Huge difference.


I wish our GP surgery would use one as there are tatty curled up notices all over the place.


----------



## Bloden

helli said:


> I agree with @Inka that it is a great way for your son to learn maths and take some control of his diabetes management.
> 
> A friend of mine is a math tutor and gets very frustrated by parents (unfortunately, usually mothers) telling their children (usually daughters) that math is difficult so the kids will just give up before they start.
> Earlier this year, a government advisor who I think is a head teacher said something about girls not liking the "hard maths" of physics. As a female engineer who (luckily) loved maths, I get very frustrated by the idea that because someone else finds something difficult others shouldn't bother.
> 
> Sorry, I didn't mean to start a rant. I realise not everyone is a maths geek and it is challenging for some. I hope the diabetes is something that encourages your son to master it.


Rant on @helli. I'm sure my dislike of maths comes from absorbing the idea when I was at school that it "wasn't for girls". I was chuffed to bits when my niece got a first in maths AND she doesn't fit the expected maths geek profile (not that there's anything wrong with geekiness - I'm a languages nerd). 

I make my own cards for work @SunflowerMama - you've got me thinking a laminator could come in handy.


----------



## SunflowerMama

Talking about laminators... If you get one run a plain folded piece of paper through yours on a regular basis to ensure no sticky build-up on the roller.... to avoid crying cuz it crinkled up 4 pages.


----------



## PJF

Hi, it sounds very like, my own experience of diagnosis 59 years ago when I was 7 years old. I'm glad it shocked other medical professionals so it cannot be common.
So much has changed, no more rigid diets, insulin regimes and meal times. Most freedom came from at home blood glucose testing and its continous improvements and of course the ability to take an amount of insulin consistent with how much and what you wanted to eat, within reason. 
So many years ago I remember my Mother going out, for what I believe was the first time, after my discharge from hospital. I can remember her going through the diet book (no carbohydrates on packets in those days) and her telling me and my Father, exactly what I was to have. She obviously had the same concerns you did about leaving me, even with my Dad. 
The main thing I had going for me though was parents, who let me live my life like any other child my age, and taught me to look after my self. I was always made to feel I was special, not because I had diabetes but because they thought I managed it well, without making a fuss. 
Until I read your post I don't think I ever thought of how lost my parents must have felt, I always thought of them as knowing. I do think though that, pre computer and internet days, they didn't see all the jargon and my Mum had 6 weeks until the next hospital appointment to absorb the latest information. 
You care like my parents did so you will do fine, just let your son know your proud of how he's coping and he will have as happy a life, as I have for the most part had. 
He will need to learn to look after his own diabetes but we all need to ask our diabetes team for help on occaision and as parents so do you. My own experience suggests writing your questions down will help stop them spinning around in your brain. Some answers I think you'll find on the forum, I'm still new on here myself. I've asked questions but it's the first time I've posted a reply, I hope I've helped. I'm sure your not alone feeling the way you do, although no-one's experience will exactly replicate yours but you will get there.


----------



## PJF

Sorry, I read page 1 then replied so my post goes from mainly nonsense to complete nonsense, SunflowerMama I think you are getting your head round so much in such a short time. My husband had trouble sorting out how many carbs in food (house husband and cook post retirement) He did get good at it though, so you'll get there. 
On the maths topic I was 17 before I found out a local school only allowed girls to do arithmetic because they weren't wired for Mathematics, this was 1973. I was fuming, My girls school was more enlightened, very few of us however did physics and unfortunately I'm not sure there's been much progress.


----------



## SunflowerMama

PJF said:


> Sorry, I read page 1 then replied so my post goes from mainly nonsense to complete nonsense, SunflowerMama I think you are getting your head round so much in such a short time. My husband had trouble sorting out how many carbs in food (house husband and cook post retirement) He did get good at it though, so you'll get there.
> On the maths topic I was 17 before I found out a local school only allowed girls to do arithmetic because they weren't wired for Mathematics, this was 1973. I was fuming, My girls school was more enlightened, very few of us however did physics and unfortunately I'm not sure there's been much progress.


Not nonsense at all.  I still feel like its an emotional roller-coaster.  I try and say at least its me with all the feelings and not my son.  He is coping amazingly.  Just for me its a big grieving process.  I do some days where I am totally fine, then some I'm not, then some I just need a pinch to get me going and not to cry.


----------



## SunflowerMama

My son has started having times where we think his pancreas is having some of those bursts it has for the unknown amount of time before  it stops permanently.  It really scared me. 

On top of that, the libre app didn't set off an alarm until after we had scanned 3.4 then 3.6.  And after a lift drink it still dropped to 2.7.  Then we had the biscuit and it had gone up from the drink then started dropping again.. Which we are guessing is that drink wearing off.  He had a second biscuit. 

His tresiba is going to be changed and the doctor said he needs to eat to make sure its over 7 before bed.


----------



## SunflowerMama

That episode lasted 2 hours.  Since his blood glucose hasn't been "right".  He normally changes more after meals but the shift is very little and it keeps creaping down.  He has had 3 lows today.  Surely must all ne pancreas action. 

My son said he sure hopes his pancreas stops sooner than later.  It was nice when things were more predictable.


----------



## rebrascora

You might want to consider discussing a basal reduction with your nurse if there is a pattern of lows emerging. It sometimes happens that after insulin is introduced, the pancreas gets a second wind and starts to manage a little better itself and the basal dose needs to be dialed down a bit. 

If it is any consolation I occasionally have 3 or more lows in a day and I am pretty sure I am now out of the honeymoon period, but my liver seems to vary a lot in it's output due to my quite varied lifestyle, so I have to adjust my basal doses quite frequently. 
Your body gets used to the lows and whilst not ideal I no longer panic when I get them so they are more of a nuisance than the terrifying experience they used to be when I first started using insulin. Hope you are able to find some smooth sailing with your son's BG levels soon.


----------



## SunflowerMama

Oh yes, I forgot to say his tresiba has been adjusted.  Originally was supposed to go down to 11 yesterday but I called for advice yesterday evening and the consultant asked if we had given the tresiba yet and we hadn't.  So she said take it down to 10 instead.


----------



## Thebearcametoo

Some days are like that with several hypos or stubborn hypos. Adding an extra 10g of carbs without insulin to meals after several hypos is a good idea. 

Don’t forget tresiba stays in the system for longer than 24 hours so you may not see a change today.


----------



## SunflowerMama

My son's blood sugar levels have not been, today, what they had been before yesterday's big event. 

Previously, you could expect a certain rise after eating of maybe 4 or so points but then it would come down within two hours to something relatively stable. 

Today, after eating his levels have barely gone up (except once) but every single time have worked their way dow to between 4.3 and 5.

I want to call and discuss this tomorrow with someone. 

What does this mean to you?  He only moved his tresiba from 12 to 10 last night so I think too soon to see that effect.  Could it be now his novorapid is too high as well?


----------



## SunflowerMama

I decided I won't sleep without asking so called.  We will be dripping tresiba to 8 tomorrow and they will look at the day's readings.  I will call them back tomorrow before he has tresiba to discuss the readings.


----------



## Thebearcametoo

Some days are just like that. I wouldn’t mess around with basal based off one or two days of readings but look at the pattern over a longer time. If you can see he’s having a lowish days you can either reduce bolus by 10% or give 10g of free carbs with the meal or if you can see him dropping give him a snack. 

Yes the honeymoon phase can make things more complicated but even without it insulin needs can vary with activity, weather, wellness etc. The algorithms used to calculate basal and bolus rates are averages and there will be natural variation within that. Some foods may act differently than expected. It’s not as simple as x + y = z

Tresiba stays in the system for more than 24 hours. We were recommended to wait 3 days before making changes and then only do 10% so it may be that going down to 8 too soon will mean he swings the other way. It will be safe so don’t worry but you will likely have to put it up again over the coming week just take it slowly.


----------



## SunflowerMama

Oh yes, I don't have the confidence to adjust anything myself yet so I always ask the diabetic team to look at his readings to see what they think.  The nurse told me one day I'd be choosing myself but it still seems way too complicated to me. 

I am concerned dropping to 8 tresiba tonight after it just being moved to 10 two nights ago seems quick.  I was also at 15 a week and a half ago and needed to be changed for school starting due to lows. 

So, the consultant said call her before its given tonight so we can review today's readings first.


----------



## SunflowerMama

Well this makes no sense, I put in a complaint.  I was going to make 200g which I calculated to be 9.4g of carbs (using the info provided for 100g of product)... It also says that half a pack contains 6.9g of carbs... But half is 300g....

That makes no sense to me at all.


----------



## Leadinglights

SunflowerMama said:


> View attachment 22131
> 
> Well this makes no sense, I put in a complaint.  I was going to make 200g which I calculated to be 9.4g of carbs (using the info provided for 100g of product)... It also says that half a pack contains 6.9g of carbs... But half is 300g....
> 
> That makes no sense to me at all.


I seem to remember a similar quandary with some barbeque pork ribs and I think it is because there are bones in it which makes the difference between the pack size and the actual amount that is eaten.


----------



## SunflowerMama

Leadinglights said:


> I seem to remember a similar quandary with some barbeque pork ribs and I think it is because there are bones in it which makes the difference between the pack size and the actual amount that is eaten.


How would you measure that then?  It doesn't say 100g of edible portion.  I decided to guess in the end as it was mostly chicken with a bit of sauce.


----------



## Thebearcametoo

Yeah that doesn’t make sense. Sometimes you get a difference between uncooked (per 100g) and cooked (per portion) especially with things like pasta but that doesn’t seem to be the case there. It’s mostly chicken so I would underestimate to err on the side of caution.


----------



## Lucyr

SunflowerMama said:


> View attachment 22131
> 
> Well this makes no sense, I put in a complaint.  I was going to make 200g which I calculated to be 9.4g of carbs (using the info provided for 100g of product)... It also says that half a pack contains 6.9g of carbs... But half is 300g....
> 
> That makes no sense to me at all.


“Half is 300g” how did you get to that figure, did you cook it all, strip out the edible portion and weigh that and half came to 300g?

If you’re just using the pack weight then it’s user error not a fault on the label. The label says “oven cooked edible portion” so you need to weigh it when it’s an oven cooked edible portion. Or use the half a pack column if you’re having half a pack.


----------



## Lucyr

So then if the pack weight is 600g raw and you want to eat 200g raw weight not 300g the calculation is just

Double the half pack carbs to get full pack: 2 x 6.9g = 13.8g

Divide by what proportion of the pack you’re having: 13.8g / 3 = 4.6g

Alternatively cook it and weigh the edible portion then use the “per 100g oven cooked edible portion” column.


----------



## SunflowerMama

The entire chart is for edible portion.  How does the collumn for 100g and 1/2 pack (300g) make sense then? 

If half is 300g then should it not be 3x 100g?


----------



## Lucyr

SunflowerMama said:


> The entire chart is for edible portion.  How does the collumn for 100g and 1/2 pack (300g) make sense then?
> 
> If half is 300g then should it not be 3x 100g?


What makes you think half the pack, once it’s cooked and stripped to only the edible part, weighs 300g? Did you actually weigh it once oven cooked and stripped to just the edible part?

I suspect what you’re doing is seeing the pack weighs 600g as it is sold then saying half that is 300g. But the weight of the pack is the raw weight, that will just say 600g it won’t say “600g oven cooked edible portion”. Whereas the nutritional information specifies that it is for the “oven cooked edible portion”.

If half the pack is 300g as sold, then if you oven cook that and weigh only the edible portion (you don’t eat the bones), it will not weigh 300g, it will weigh much less, probably weighs about 150g.

So where it is going wrong is that it sounds like you’re not weighing the oven cooked edible portion. If you don’t want to weigh it like that, or you aren’t able to use my logic, then use my method in previous post to calculate the carbs for the raw portion. 

But, the pack nutritional information does not look wrong and you don’t need to put in complaints about these things, just need to read the top left of nutritional info where it tells you how to weigh it “oven cooked edible portion”


----------



## Leadinglights

Lucyr said:


> What makes you think half the pack, once it’s cooked and stripped to only the edible part, weighs 300g? Did you actually weigh it once oven cooked and stripped to just the edible part?
> 
> I suspect what you’re doing is seeing the pack weighs 600g as it is sold then saying half that is 300g. But the weight of the pack is the raw weight, that will just say 600g it won’t say “600g oven cooked edible portion”. Whereas the nutritional information specifies that it is for the “oven cooked edible portion”.
> 
> If half the pack is 300g as sold, then if you oven cook that and weigh only the edible portion (you don’t eat the bones), it will not weigh 300g, it will weigh much less, probably weighs about 150g.
> 
> So where it is going wrong is that it sounds like you’re not weighing the oven cooked edible portion. If you don’t want to weigh it like that, or you aren’t able to use my logic, then use my method in previous post to calculate the carbs for the raw portion.
> 
> But, the pack nutritional information does not look wrong and you don’t need to put in complaints about these things, just need to read the top left of nutritional info where it tells you how to weigh it “oven cooked edible portion”


Any of the things you buy which have parts which you don't eat the carbs will only be an estimate. The pork ribs I mentioned earlier have a sachet of sauce so if you choose not to use all of it then the carbs will be different.  Some packs may have bigger bones that are not doing to be eaten.  On meat products which have a marinade then most of the carbs will be in the marinade.


----------



## helli

I find the difference in raw and cooked carbs easier to understand with something like rice. Rice is very dry before cooking. Then it soaks up some of the water making it weight more whilst gaining no carbs along the way. I weigh my rice before I cook it so need to consider the uncooked carb content. 
The same is true for pasta.


----------



## SunflowerMama

Tresiba at 8 seems to be making a big difference lately.  His night time levels are what I am calling a diabetic straight line... As close to a straight line as it van be while a straight line is impossible.


----------



## Thebearcametoo

That’s great. It makes it easier to know if the bolus ratios are ok if you have a level base to work off.


----------



## SunflowerMama

My son placed a new sensor yesterday.  Overnight it failed to trigger an alarm 5 times so we never knew he was dropping to 3.1.

I have spoken to Abbott and they are sending a replacement.  They changed a battery optimization setting on my son's phone blaming that.  They said if it fails again return the sensor, if not continue using it until done. 

Not sure what to do?  Should we keep using it or replace it?


----------



## helli

SunflowerMama said:


> Not sure what to do? Should we keep using it or replace it?


Why don’t you temporarily change the low threshold to something higher and see if it triggers an alarm?
 However, bear in mind the ability to have alarms is very new. Many of us survived for decades without them. If you are concerned, you could set an alarm to wake you up and check.

By the way, are you sure the 3.1s were “real” rather than compression lows. When newly diagnosed, a low of that level would give me a _hypo hangover _(headache and nausea) the following morning. It is important not to become dependent on the Libre and its alarms.


----------



## SunflowerMama

What are compression lows? 

My son doesn't seem to get a lasting effect after his lows.  Even the time it was 2.7 about half hour after it passed he felt normal again.


----------



## SunflowerMama

Oops, will repost edited


----------



## SunflowerMama

Last night


----------



## helli

SunflowerMama said:


> What are compression lows?


When you apply pressure to a sensor (such as when you lie on your arm at night), it will falsely report a low reading. This is one of the reasons why all highs and lows should be checked with a finger prick (unless it is an obvious hypo) before treating.


----------



## SunflowerMama

helli said:


> When you apply pressure to a sensor (such as when you lie on your arm at night), it will falsely report a low reading. This is one of the reasons why all highs and lows should be checked with a finger prick (unless it is an obvious hypo) before treating.


He didn't wake in the night so we didn't know until he scanned when he woke and the chart filled itself in. 

Is there a way to know just looking at the chart or is the finger prick the only way still?


----------



## helli

SunflowerMama said:


> He didn't wake in the night so we didn't know until he scanned when he woke and the chart filled itself in.
> 
> Is there a way to know just looking at the chart or is the finger prick the only way still?


Finger pricking is the only way to really know. The charts only tell you the sensor readings. However, sudden dips that rebound are a good suggestion that it is a false reading.


----------



## SunflowerMama

The lines were relatively straight each night before in the 5-6 range.


----------



## Thebearcametoo

Seeing as the readings rebounded without intervention it looks like sensor issues and not a true hypo. I don’t know what your alarm settings are. I think with the dexcom we have it set to hypo for more than 15 minutes. If the Libre is the same it’s possible that he didn’t stay in the hypo zone for long enough for the alarms to sound. 

We’ve found hydration levels make a big difference to the sensors reliability. Yes you may get a compression issue too but either way if there’s not enough fluid reaching the sensor it can mess with the readings. If we get a hypo in the middle of the night where it looks like the numbers fell off a cliff I usually just get him to roll over so he gets more blood moving rather than treat it as an actual hypo. We’ve never had the sort of yo-yo you had though.  

Sensors are helpful in giving data over time so try not to get too panicked about one night. I know it feels terrible to miss alarms for whatever reason and adds to the worry though.


----------



## rebrascora

If he didn't wake up and treat them then my guess judging by those rebounds going straight back up to the level they descended from, would be that he was perhaps tossing and turning in his sleep and they are compression lows from lying on the sensor. 
Is this a new sensor and if so, have you placed it in a slightly different place on his arm or perhaps on the opposite arm to the previous one and he is more inclined to sleep on that arm/side? I can't say why the sensor didn't alarm and wake him/you or maybe it did but none of your heard it. It is easy to take everything the Libre reports as factual but Libre has limitations and quirks and understanding those is an important part of interpreting the results it gives you.


----------



## SunflowerMama

The only other time he had that yoyo was during am evening where maybe gis pancreas did something but it was more dramatic. 

He has a libre 2 set to alert anything bellow 4.5, I shall check his app in a bit but I don't think there is a length of time as well.


----------



## SunflowerMama

The sensor was placed on the opposite arm yesterday, only over a centimeter or so from the last time one was there as I still saw a red mark so wanted to be sure not to prick that spot yet.


----------



## SunflowerMama

I questioned my son.  He said he does sleep on that arm more and especially last night because his other arm was sore from the covid jab.  So maybe it is the pressure.


----------



## SunflowerMama

My son has a slight bruise on his arm and a bit of a firmish patch.  I assume this is one of those injection lumps.  I know that area needs to be avoided but for how long?


----------



## Inka

I’d avoid it until the bruise and lump have gone @SunflowerMama


----------



## SB2015

I would agree with @Inka .  Just steer clear of that spot for a while and let it settle.

The blips from compression lows happen with all sensors, and become evident as they right themselves without intervention (as we roll over off the sensor) I try to position mine so that they are on the ‘flabby bits’ of my arm so that they are not leant on with all my weight.  Moving to the underside of the arm can help.


----------



## SunflowerMama

Just for clarification, I'm not sure anyone or our DT said... Are we avoiding using that precise spot or that entire arm? 

My son has gained 11 lbs since diagnosis but his arm is still quite small making the lump seem large. No visibly large, to touch... His arm is so thin it is more than it would look if he was a healthy weight.


----------



## SunflowerMama

Oh AND, the lump is bellow where the sensor is.  His next sensor will go in the other arm but when its this arm's turn again should we avoid the sensor being there too? 

Will get him to lay down next time to help figure out a better spot for the sensor.


----------



## SB2015

I just alternate arms and move away from any lumps.  
Checking in lying down position is a good plan.


----------



## Thebearcametoo

A lump below the sensor may be a bruise from the applicator or may be unrelated. See how it is when it comes time to use that arm again. You *can* use the Libre on the abdomen instead of the arm but check with your diabetes team. It’s not licensed for anywhere other than the arm (unless they’ve updated it) but you can use a dexcom on the abdomen, arm, or upper buttocks and the Libre is working on the same principle of reading interstitial fluid so you can move it around if need be.


----------



## Sharon Lady P

SunflowerMama said:


> My son was diagnosed with type 1 on Monday (august 1st) in hospital.
> 
> Last week, on Thursday, we went to our GP surgery because my son was drinking so much and peeing so often.  They suspected diabetes right away, did a urine and prick test that lined up with that theory leading them to do a blood test immediately..... Then told us the results would take a long time to return and sent us home with no advice or guidance of any sort.
> 
> We were baffled and uninformed so waited.  Monday the GP (not the person we saw Thursday) received the results, called us in and said go to hospital straight away.  We clearly got the impression he did npt agree with us having been sent home 5 days earlier but didn't say so straight out.
> 
> The hospital was able to diagnose my son in maybe just over an hour of us arriving there.   We were questioned a lot over what happened and every detail about our GP surgery experience and they will be investing that and advised me to submit my own complaint as that is the only way I would be able to keep informed over what happens with the GP surgery.  The hospital said the investigation would ensure this situation didn't happen to anyone else in the future.
> 
> Our hospital experience was fantastic and the ongoing support is more than I expected and I am very grateful for that!
> 
> My son is 14 and coping amazingly, certainly better than I am, and is only irritated we keep asking him how he feels.
> 
> So, right now we are trying to get more comfortable with the changes and learn how his body reacts to pretty much everything.
> 
> I have tried looking through the forum but it feels like so much is written in a secret language I don't know yet, even the newly diagnosed parts.  I think I won't read too much of that for now.
> 
> Just wanted to say hi really.


Just wanted to say I’m with you. My daughter was diagnosed in May and it’s very stressful for a mum to come to terms with it whilst also giving support. I really feel for you both. You’ll learn loads very quickly and there’s a great book diabetes for children and young people that was recommended here, but I think it’s fantastic for adults too.
P.s. our GP experience was awful. My daughter was told ‘go to your dentist for a dry mouth, it’s not our problem!’ It pretty soon became their problem when she was admitted to hospital on the verge of collapse with DKA. I have a complaint ongoing as I never want anyone to experience this again.


----------



## Sharon Lady P

Sharon Lady P said:


> Just wanted to say I’m with you. My daughter was diagnosed in May and it’s very stressful for a mum to come to terms with it whilst also giving support. I really feel for you both. You’ll learn loads very quickly and there’s a great book diabetes for children and young people that was recommended here, but I think it’s fantastic for adults too.
> P.s. our GP experience was awful. My daughter was told ‘go to your dentist for a dry mouth, it’s not our problem!’ It pretty soon became their problem when she was admitted to hospital on the verge of collapse with DKA. I have a complaint ongoing as I never want anyone to experience this again.


This is the book I recommended


			type 1 diabetes children young people 7th edition - Google Shopping


----------



## SunflowerMama

Sharon Lady P said:


> Just wanted to say I’m with you. My daughter was diagnosed in May and it’s very stressful for a mum to come to terms with it whilst also giving support. I really feel for you both. You’ll learn loads very quickly and there’s a great book diabetes for children and young people that was recommended here, but I think it’s fantastic for adults too.
> P.s. our GP experience was awful. My daughter was told ‘go to your dentist for a dry mouth, it’s not our problem!’ It pretty soon became their problem when she was admitted to hospital on the verge of collapse with DKA. I have a complaint ongoing as I never want anyone to experience this again.


You know, I replied to my GP's response letter as they instructed... Called the person listed having to leave a voice message.... And they never called me back.  So I escalated it by submitting a complaint to the ombudsman.  So ours is ongoing too. 

At least our hospital based diabetic team is fantastic.


----------



## SunflowerMama

Got another reply to me contacting the surgery again over my complaint.  I received a further apology and they admitted the clinician did not know the pathway for handling a diabetes diagnosis in children.  They day they have now all had training and the pathway for treating/diagnosing children is now sign posted in every room. 

She said she did call me back and left a voice message but I never received it.  I almost never get calls (hate calls, only text if I can), so its not like I would have to sift through a lot of voicemail to find anything.  So either she used a severely out of date numbet or never called.


----------



## everydayupsanddowns

Sorry to hear you are having such a stressful time with it @SunflowerMama 

Hope it is all resolved smoothly and swiftly.


----------



## SunflowerMama

At some point I should start a new thread. 

How will we know when the honeymoon period is over?  My son is having what must be another bout of weirdness.  I find these difficult.


----------



## Thebearcametoo

The clinic will be able to confirm with the annual blood tests but you may find you can tell yourself by how things change (or stop changing). With growing kids things are continually changing though and then you add in illness or changes in the weather or other random factors and you’re always making adjustments. Go with the flow as much as you can.


----------



## rebrascora

Can you explain what you mean by weirdness? 

My honeymoon period lasted about 2 years and went through 3 reasonably distinct phases where I was really battling, mostly high levels until I increased my basal insulin. Sometimes I would need to keep increasing it every few days/weeks for several months until it stabilized. 
Basically my basal insulin needs ramped up and then leveled off for several months, then ramped up again and then settled. The final stage was just after my first Covid vaccine and I spent 3 months slowly increasing my basal doses until it was double what it had been. It then leveled out and has been reasonably steady, give or take a couple of units more or less for increased or decreased activity since then and that is a year and a half ago. I am reasonably sure that was the end but I can never be totally sure   Not sure if that makes sense?


----------



## SunflowerMama

My son is maybe the opposite.  His basal insulin has been getting lower and lower because his levels are getting lower.  

Now we are in the second bout where his blood sugars are dropping either when food should be kicking in and following its curve, or in the night when there is nothing that should be having a big effect and then he drops or drops a few times. 

Also sometimes the actual treatment, lift shot and later biscuit isn't leading to the levels it should but giving a slight rise then a low again.


----------



## rebrascora

If he is dropping through the night when there is no active meal time insulin in his system, then it is likely his basal dose is too high. You need to speak to his team about this, particularly as it is causing repeated nocturnal hypos.
Don't underestimate the power of basal insulin to drop levels significantly and keep dropping them. I find basal can be more powerful than bolus insulin sometimes and I think part of the problem is that it catches you more unawares, particularly through the night. For me nocturnal hypos are usually after I have had a very active day. My body seems to cope pretty well during the exercise, but at night my muscles suck all the glucose out of my blood to replenish their stores and my levels drop. Not sure which basal insulin your son has but my basal, Levemir is in 2 doses, one in the morning and one at night. If I have had an active day then I need to reduce the nighttime dose by about 2 units to prevent nocturnal hypos. I may need to keep that reduced rate for the next night and then bring it back up. If I have 2 active days in a row, then I need to reduce it further. When I am more sedentary then it needs to be adjusted back up. This is just me and how my diabetes works with the insulins I have. Just really suggesting what the problem may be, but you really need to discuss problems with nocturnal hypos with your son's team as this is a priority issue.


----------



## SunflowerMama

My son uses Tresiba.  He originally started at 15 every evening and it has worked its way down since.  We were told to reduce it from 8 to 7.5 yesterday and they see reviewing the readings in a day or two. 

I can't say I fully understand the insulins yet, or I don't feel confident in my understanding.  But feels like a big change from 15 to 7.5.  That has changed from September 1 until now gradually.


----------



## rebrascora

It will take that recent change at least another couple of days to have full effect, so it makes sense for them to review it in a day or two.

As regards the steady reduction in basal insulin. This is part of the honeymoon period and far from ending it sounds like his insulin producing beta cells may be having quite a lively honeymoon in full swing. There are some memberes here on the forum whose insulin needs reduced to almost nothing for a few months after they started on insulin. We have at least one member, an adult, who doesn't need any basal insulin at all but needs significant amounts of mealtime insulin after initially needing both. Human bodies are complex and we all respond differently. This is why managing diabetes can be pretty challenging. Eventually you figure out the sort of normal range for you (your son) the strategies which work in particular circumstances but it takes time and experience to see the wood from the trees. 

It must be so incredibly scary being a parent and having the responsibility of managing this for your child (((HUGS))).

You are still in the very early days of this although it may not feel like it, but slowly and steadily you will start to see patterns and understand it a little better and learn how to manage it better. Please be assured you are doing a great job and the fact that he is hypoing is not your fault or anything you are doing wrong. It is just a period of adjustment whilst yourselves and his team figure it out. You could try giving him a snack before he goes to bed for the next 2 nights to bump his levels up a bit, particularly if he is a little bit low at bedtime. Have your son't team given you a suggested level that he should be before he goes to bed.... No lower than 8 for instance and if he is below 8 then to have a biscuit or a slice of bread with peanut butter or cheese and biscuits or similar to push his levels above 8 so that it has room to drop a good way before he becomes hypo. What I mean is that if he goes to bed on 6 and his levels drop more than 2 mmols then he will be hypo, but if you give him a 10g carb snack, that should take him up to about 9 which means that if he drops 2 he would still be at a comfortable level (7) and he would have to drop 5 mmols during the night to become hypo. If he is still dropping that much then give him 20g carbs (without mealtime insulin) at bedtime so that should push him up to about 12 and that should keep him safe, even if his levels are a bit high, this is preferable to having nocturnal hypos.


----------



## Joueiso

SunflowerMama said:


> My son was diagnosed with type 1 on Monday (august 1st) in hospital.
> 
> Last week, on Thursday, we went to our GP surgery because my son was drinking so much and peeing so often.  They suspected diabetes right away, did a urine and prick test that lined up with that theory leading them to do a blood test immediately..... Then told us the results would take a long time to return and sent us home with no advice or guidance of any sort.
> 
> We were baffled and uninformed so waited.  Monday the GP (not the person we saw Thursday) received the results, called us in and said go to hospital straight away.  We clearly got the impression he did npt agree with us having been sent home 5 days earlier but didn't say so straight out.
> 
> The hospital was able to diagnose my son in maybe just over an hour of us arriving there.   We were questioned a lot over what happened and every detail about our GP surgery experience and they will be investing that and advised me to submit my own complaint as that is the only way I would be able to keep informed over what happens with the GP surgery.  The hospital said the investigation would ensure this situation didn't happen to anyone else in the future.
> 
> Our hospital experience was fantastic and the ongoing support is more than I expected and I am very grateful for that!
> 
> My son is 14 and coping amazingly, certainly better than I am, and is only irritated we keep asking him how he feels.
> 
> So, right now we are trying to get more comfortable with the changes and learn how his body reacts to pretty much everything.
> 
> I have tried looking through the forum but it feels like so much is written in a secret language I don't know yet, even the newly diagnosed parts.  I think I won't read too much of that for now.
> 
> Just wanted to say hi really.


----------



## Joueiso

SunflowerMama said:


> At some point I should start a new thread.
> 
> How will we know when the honeymoon period is over?  My son is having what must be another bout of weirdness.  I find these difficult.


Hi, My 8Y was diagnosed on the 6/8/2022. Honeymoon phase can last quiet bit I was told. Though iv learnt that dome foods react differently to hid blood sugar. High fat stuff peaks his sugars much later. Getting the ratios right took a while. How are you coping with school?


----------



## SunflowerMama

rebrascora said:


> It will take that recent change at least another couple of days to have full effect, so it makes sense for them to review it in a day or two.
> 
> As regards the steady reduction in basal insulin. This is part of the honeymoon period and far from ending it sounds like his insulin producing beta cells may be having quite a lively honeymoon in full swing. There are some memberes here on the forum whose insulin needs reduced to almost nothing for a few months after they started on insulin. We have at least one member, an adult, who doesn't need any basal insulin at all but needs significant amounts of mealtime insulin after initially needing both. Human bodies are complex and we all respond differently. This is why managing diabetes can be pretty challenging. Eventually you figure out the sort of normal range for you (your son) the strategies which work in particular circumstances but it takes time and experience to see the wood from the trees.
> 
> It must be so incredibly scary being a parent and having the responsibility of managing this for your child (((HUGS))).
> 
> You are still in the very early days of this although it may not feel like it, but slowly and steadily you will start to see patterns and understand it a little better and learn how to manage it better. Please be assured you are doing a great job and the fact that he is hypoing is not your fault or anything you are doing wrong. It is just a period of adjustment whilst yourselves and his team figure it out. You could try giving him a snack before he goes to bed for the next 2 nights to bump his levels up a bit, particularly if he is a little bit low at bedtime. Have your son't team given you a suggested level that he should be before he goes to bed.... No lower than 8 for instance and if he is below 8 then to have a biscuit or a slice of bread with peanut butter or cheese and biscuits or similar to push his levels above 8 so that it has room to drop a good way before he becomes hypo. What I mean is that if he goes to bed on 6 and his levels drop more than 2 mmols then he will be hypo, but if you give him a 10g carb snack, that should take him up to about 9 which means that if he drops 2 he would still be at a comfortable level (7) and he would have to drop 5 mmols during the night to become hypo. If he is still dropping that much then give him 20g carbs (without mealtime insulin) at bedtime so that should push him up to about 12 and that should keep him safe, even if his levels are a bit high, this is preferable to having nocturnal hypos.


I have asked the DT about this previously and they said not to eat a certain amount of carbs before and that it was about getting the carbs right.  I will ask again though. 

When everything is working in gets as close to a straight line, at night, as nature allows.  These night hypos seem to be different somehow.


----------



## SunflowerMama

Joueiso said:


> Hi, My 8Y was diagnosed on the 6/8/2022. Honeymoon phase can last quiet bit I was told. Though iv learnt that dome foods react differently to hid blood sugar. High fat stuff peaks his sugars much later. Getting the ratios right took a while. How are you coping with school?


School isn't too bad.  My son likes the same lunch every day so that helps a bit to know what to predict usually. 

Tricky foods are something we are still figuring out.  Pasta and rice confuse things, but pizza seems fine.


----------



## Joueiso

SunflowerMama said:


> School isn't too bad.  My son likes the same lunch every day so that helps a bit to know what to predict usually.
> 
> Tricky foods are something we are still figuring out.  Pasta and rice confuse things, but pizza seems fine.


Really pizza is the tricky one. School have made me make pack lunch everyday until they sort out the carb count on their menu. Wev managed to make the adjustments so he is jot having a hypo. Has your son put on weight? My son has put on 3-4kgs since diagnosed so I am worried about weight gain. I want to go on the pump but think the wired options will be a nightmare for him not sure when the new models are coming out in the UK.


----------



## SunflowerMama

Joueiso said:


> Really pizza is the tricky one. School have made me make pack lunch everyday until they sort out the carb count on their menu. Wev managed to make the adjustments so he is jot having a hypo. Has your son put on weight? My son has put on 3-4kgs since diagnosed so I am worried about weight gain. I want to go on the pump but think the wired options will be a nightmare for him not sure when the new models are coming out in the UK.


My son was underweight before diagnosis and is putting on weight steadily.  He is unlikely to put on too much as he takes after dad.  My son could stand to put on quite a bit more. 

School gave us the choice for oacked lunch or not.  My son is a fussy eater so it was always going to be packed lunches anyway.


----------



## SunflowerMama

The tresiba seems to have kicked in, my son's readings were between 5.9 and 8 overnight... Or the pancreas bout is ending. 

That bit confuses me.  I am understanding that the honeymoon period is more a constant but to me it looks like bouts of several days then settles to something constant for a couple weeks.


----------



## rebrascora

SunflowerMama said:


> I am understanding that the honeymoon period is more a constant but to me it looks like bouts of several days then settles to something constant for a couple weeks.


For me, this ebb and flow *IS* diabetes rather than the honeymoon period. I am pretty sure I am over the honeymoon period after 3.5 years but I still find I have a few days where my levels behave quite nicely and then I struggle for a few days, usually involving a basal insulin adjustment and then I have smooth sailing for a few days or weeks and then a turbulent patch again. Everyone's bodies are different, but it rarely goes smoothly all the time even beyond the honeymoon. You do just get used to knowing when things need tweaking to get it back on track.


----------



## SunflowerMama

rebrascora said:


> For me, this ebb and flow *IS* diabetes rather than the honeymoon period. I am pretty sure I am over the honeymoon period after 3.5 years but I still find I have a few days where my levels behave quite nicely and then I struggle for a few days, usually involving a basal insulin adjustment and then I have smooth sailing for a few days or weeks and then a turbulent patch again. Everyone's bodies are different, but it rarely goes smoothly all the time even beyond the honeymoon. You do just get used to knowing when things need tweaking to get it back on track.


Its still hard to believe my son and I will get it one day. 

---------

So the tresiba change seems to have sorted the night lows but today sure was a big zig zag.  Didn't have the expected follow up from the DT to the change so I don't know how to interpret it myself yet.


----------



## rebrascora

SunflowerMama said:


> Its still hard to believe my son and I will get it one day.
> 
> ---------
> 
> So the tresiba change seems to have sorted the night lows but today sure was a big zig zag.  Didn't have the expected follow up from the DT to the change so I don't know how to interpret it myself yet.


The most important thing is to stop the night time hypos. After that it will be a question of managing any daytime highs with corrections.... Have you been taught about corrections yet and have a correction factor? ie 1 unit of insulin will drop your son so many mmols? 

Would you like to post his day's Libre graph or whatever he is using so that we can perhaps help you spot issues?


----------



## SunflowerMama

rebrascora said:


> The most important thing is to stop the night time hypos. After that it will be a question of managing any daytime highs with corrections.... Have you been taught about corrections yet and have a correction factor? ie 1 unit of insulin will drop your son so many mmols?
> 
> Would you like to post his day's Libre graph or whatever he is using so that we can perhaps help you spot issues?


Well, they haven't told us how to make corrections on our own, but we have the MyLife app to enter in details and it knows how much insulin in inboard and tells us if more is needed.  So far, it has only ever offered corrections when things went above 15, so quite rarely. 

Until this latest period of different readings the zig zags were obvious as to what the cause was based on timing. 

Here is today.  Its not that much out if the green but it seems very zig zaggy to me.


----------



## SunflowerMama

Adding another that one was incomplete


----------



## rebrascora

That graph doesn't look bad at all, especially for the parent of a child relatively newly diagnosed..... in fact considering it is a child I think it is blooming well brilliant. None of those spikes go above 12 and they come straight down again and none below 4. I would say, that was a really good day. It is always possible to do better.... for all of us, but it is also important to know that non-diabetic people get spikes/zig zags too so you may have unrealistic expectations of what is possible.


----------



## SunflowerMama

rebrascora said:


> That graph doesn't look bad at all, especially for the parent of a child relatively newly diagnosed..... in fact considering it is a child I think it is blooming well brilliant. None of those spikes go above 12 and they come straight down again and none below 4. I would say, that was a really good day. It is always possible to do better.... for all of us, but it is also important to know that non-diabetic people get spikes/zig zags too so you may have unrealistic expectations of what is possible.


Yes, I think I don't know how to create expectations.  The DN said I could prick myself for awhile to document what is normal... But I haven't as I think my brain will just turn that into something to worry about.


----------



## helli

rebrascora said:


> I am pretty sure I am over the honeymoon period after 3.5 years


I do not know how long is a typical honeymoon period. I am aware it is longer when diagnosed at an older age.
I believe my honeymoon lasted 8 years. Thankfully, I did not experience the "splutter" of insulin production.
 However, I found I would need to gradually increase my dose. Over eight years, my basal needs very slowly increased from about 5 units to 15 units. I did not gain weight. I did not eat more. My activity levels stayed constant. 
After eight years, my insulin needs leveled out. My hypothesis is my beta cells were slowly dying off over this period until there were non left.

So, I would not assume your honeymoon is over after only 3.5 years. You may still be producing your own insulin albeit less than your body needs.


----------



## rebrascora

His levels are currently dropping quite sharply right now from that graph and I am aware that it will be bedtime for him so if it had been me, I might have given him a little bedtime snack just to bump his levels up a bit more. Maybe a small glass of milk or a digestive biscuit or half a slice of toast with a bit of peanut butter.... that sort of thing. 
From the overnight graph, it looks like his levels are still dropping a little overnight so I would be concerned that if he is going to bed with levels dropping now and you don't push them up a bit, they might drop into the red (hypo) later tonight or in the early hours.


----------



## rebrascora

helli said:


> I do not know how long is a typical honeymoon period. I am aware it is longer when diagnosed at an older age.
> I believe my honeymoon lasted 8 years. Thankfully, I did not experience the "splutter" of insulin production.
> However, I found I would need to gradually increase my dose. Over eight years, my basal needs very slowly increased from about 5 units to 15 units. I did not gain weight. I did not eat more. My activity levels stayed constant.
> After eight years, my insulin needs leveled out. My hypothesis is my beta cells were slowly dying off over this period until there were non left.
> 
> So, I would not assume your honeymoon is over after only 3.5 years. You may still be producing your own insulin albeit less than your body needs.


I appreciate that I won't know for sure when it is finished, but for me there were 3 notable phases where my basal needs increased and then stabilized. The last was a 3 month period a year and a half ago where they pretty much doubled and they have been stable give or take a couple of units here and there for exercise but no further sign of increase so far. My gut feeling is that my first Covid vaccine triggered my immune system to see off the remaining ones, but as you say, we can never be sure that we don't have some production left and I am sure I read about a study where people with 50+ years of Type 1 diabetes still had some insulin production.


----------



## SunflowerMama

rebrascora said:


> His levels are currently dropping quite sharply right now from that graph and I am aware that it will be bedtime for him so if it had been me, I might have given him a little bedtime snack just to bump his levels up a bit more. Maybe a small glass of milk or a digestive biscuit or half a slice of toast with a bit of peanut butter.... that sort of thing.
> From the overnight graph, it looks like his levels are still dropping a little overnight so I would be concerned that if he is going to bed with levels dropping now and you don't push them up a bit, they might drop into the red (hypo) later tonight or in the early hours.


The most recent scan is 7.2 with a horizontal arrow.  He is staying up later so will see what is going on beforehand.


----------



## SunflowerMama

rebrascora said:


> I appreciate that I won't know for sure when it is finished, but for me there were 3 notable phases where my basal needs increased and then stabilized. The last was a 3 month period a year and a half ago where they pretty much doubled and they have been stable give or take a couple of units here and there for exercise but no further sign of increase so far. My gut feeling is that my first Covid vaccine triggered my immune system to see off the remaining ones, but as you say, we can never be sure that we don't have some production left and I am sure I read about a study where people with 50+ years of Type 1 diabetes still had some insulin production.


I feel like covid lead to my son's diabetes, the DT said there is evidence of this but research remains incomplete.  So, we have no proof.


----------



## rebrascora

I appreciate that the arrow shows level but his levels can still be dropping but just more slowly, so if they have dropped any lower than 7.2 at bedtime, I would give him a small snack to push them up above 8 just to play it safe. I now see that that graph isn't the full 24 hour graph and starts at 9am. Can you post his full 24hour graph so that we can see what happened from midnight yesterday until now.


----------



## rebrascora

As regards Covid, it is entirely possible that it was the trigger which caused your son's immune system to attack his insulin producing cells, but it was probably on the cards to happen sooner or later anyway. Viruses are one of the known triggers along with infections, severe trauma and shock but some other virus or infection could have set it away at some other time in the future..... It is a bit like a landmine.... you don't know it is there, until someone stands on it and triggers it and then you just have to deal with the fall out from it, which is what you are doing, and managing very well by the looks of it.


----------



## SunflowerMama

rebrascora said:


> I appreciate that the arrow shows level but his levels can still be dropping but just more slowly, so if they have dropped any lower than 7.2 at bedtime, I would give him a small snack to push them up above 8 just to play it safe. I now see that that graph isn't the full 24 hour graph and starts at 9am. Can you post his full 24hour graph so that we can see what happened from midnight yesterday until now.


The app only shows a certain amount of hours on the graph and I can't scroll back to show what it was before that.  Not having scans during the night I haven't got anything useful in the log section either.


----------



## rebrascora

SunflowerMama said:


> The app only shows a certain amount of hours on the graph and I can't scroll back to show what it was before that.  Not having scans during the night I haven't got anything useful in the log section either.


That is odd. Which sensors are you using. I know Libre has that facility and I would be very surprised if Dexcom doesn't


----------



## SunflowerMama

rebrascora said:


> That is odd. Which sensors are you using. I know Libre has that facility and I would be very surprised if Dexcom doesn't


Libre.  I have librelinkup and absolutely no idea how to scroll back.  I agree I would like to scroll back often.  If I am missing a trick let me know.


----------



## rebrascora

Unfortunately I only use the reader with my Libre so I am not famliiar with the settings on the LibreLink phone app but I would imagine they are similar to the reader. I believe you actually have access to more info on the LibreLink App rather than less, so a daily graph should be there. For me I go into "Review History" and then I get a list of options which includes the Log Book, Daily Graphs, Average Glucose, Daily Patterns, Time in Target, Low Glucose Events and Sensor Usage.
I can select any one of those options and then press the back arrow to view previous data.

I can show you photos of how my reader works but not sure if that will help you...


----------



## SunflowerMama

Tomorrow I will try and remember to ask my son if I can look at the app he uses on his phone.  His version scans and all that so maybe has more features than my version.


----------



## rebrascora

SunflowerMama said:


> Tomorrow I will try and remember to ask my son if I can look at the app he uses on his phone.  His version scans and all that so maybe has more features than my version.


Ah, that makes sense. I am sure there will be a lot more info on his phone that would help you manage his diabetes better. You really need that info to understand what his levels are doing particularly overnight. What was his last scan before bed? Hope he hadn't dropped any further.


----------



## SunflowerMama

rebrascora said:


> Ah, that makes sense. I am sure there will be a lot more info on his phone that would help you manage his diabetes better. You really need that info to understand what his levels are doing particularly overnight. What was his last scan before bed? Hope he hadn't dropped any further.


Well, I texted him (because he was on the xbox) and said have a biscuit.  Then later went to say goodnight and he claimed I said take a tablet... But I texted so clearly had said biscuit.  So he shot up his levels to 12.6.  I don't think he ever had the biscuit as (he went to bed later than I did) his last scan was 6.8.

Buuuut, so lows overnight anyway.


----------



## SunflowerMama

That should say NO lows overnight


----------



## SunflowerMama

Didn't have much luck with libre 2 sensors yesterday.  The first fell off slightly earlier (not that big of a deal) the new one broke on application.  Plastic attached to the needle came out the top!  Will be reporting that one and sending it back.


----------



## rebrascora

SunflowerMama said:


> Tomorrow I will try and remember to ask my son if I can look at the app he uses on his phone.  His version scans and all that so maybe has more features than my version.



Something that strikes me with your situation is that if you are in charge of making decisions about your son's diabetic management..... then you need to be in possession of all the data.... not just when he lets you see it. If this is a privacy problem for him with his phone, then maybe a dedicated Libre device might be more appropriate.
It is not something that is an issue when a child is very small or when it is you yourself that has the diabetes, but I can see how your son might feel it is an imposition for you to be wanting to look at his phone all the time and it really is something that, the more you study the data, the more you understand and the better decisions you make, so a quick look isn't really that useful.
I wonder how other parents like @Bronco Billy and @Thebearcametoo handle this situation. Presumably you could access the data on LibreView although I personally don't find the individual daily graphs as easy to interpret on there as on my reader.


----------



## Thebearcametoo

We have dexcom follow and sugarmate so can see the data without bugging the kid. It’s true being able to see patterns over time makes it easier to work out what’s going on. We found with tresiba that we would get a hypo 24 hours after certain exercise classes which was hard to see on just daily data. 

If you can’t share data with Libre maybe get into the habit of uploading it to the computer weekly so you get to see a decent amount of data without it being intrusive.


----------



## SunflowerMama

I will look into libre view.  I haven't tried that. 

It's not that my son is secretive of his phone, I have his passwords and all in case we ever need to scan on his behalf or whatnot, it's more he doesn't like being interrupted when he is doing stuff.  Just typical teen really.


----------



## Bronco Billy

We access LibreLinkUp on our phones, which gives us the graphs and readings from our daughter's LibreView account. My wife also has the password to our daughter's LibreView account, so that she can log on to the computer and review all the information every so often if our daughter wants help.


----------



## SunflowerMama

Oh, so I can't open a Libreview account and access my son's stuff it needs to be his? 

Heard from the DN about last week's follow up and since.  She said normally they aim for patients to hit 70% in the target range but that my son is hitting 85%.


----------



## Bronco Billy

Yes. The LibreLinkUp app on your phone can link to his LibreView account to show the basic daily graph and scanned numbers, but if you want all the details, you'll need access to his LibreView account.


----------



## SunflowerMama

My son has had 8 lows since about midnight, 6 at night and 2 in the day. 

I can't figure out why.  We are also very grumpy from lack of sleep.


----------



## SunflowerMama

I should add we verified the night time lows with finger prick after the first 2.


----------



## rebrascora

So sorry to hear that you have been battling lows.
Was there any reason why you didn't check the first 2? It is a good policy to always check before treating and also 15 mins after to check that hypo treatment has been successful. Do not rely on Libre to see if his levels have come back up above 4 at the 15min post treatment point as it will invariably lead to over treatment.
Would you like to talk us through each incident and what you did?
Was he particularly active yesterday as that is usually the cause for me. I now always reduce my evening basal dose after exercise but it isn't always so easy with Tresiba, so you would reduce his bolus insulin for meals and ensure his bedtime reading is a bit higher than usual I think to prevent them if he has been more active than usual. 
The more info you can provide us with the better we can help you interpret that info and figure out why things went pear shaped and how to try to prevent it in future.


----------



## SunflowerMama

Thank you. 

We trusted the first two readings as they made sense and he felt shaky.  Two sometimes happen now and then.  But after that it was unusual so we did pricks, plus my son was so tired I thought maybe some feelings could be from that rather than a low. 

My husband works from home so he usually gets up to monitor lows, but I get frustrated as he goes off to sleep on the sofa and then my son sometimes has a biscuit at 15 minutes and goes to sleep without being thorough... So I got up and directed it. 

My son did go to bonfire celebrations from 7-11 with friends. He ate a slice of pizza and chips, went to the carnival stuff, walked a lot and laughed (apparently too much laughing affects his blood sugar even at school).


----------



## helli

rebrascora said:


> Was there any reason why you didn't check the first 2? It is a good policy to always check before treating and also 15 mins after to check that hypo treatment has been successful.


Under most circumstances, I agree. However, if I feel hypo, I will often treat straight away and then check my recovery with finger prick 15 minutes later with a finger prick. My logic is that I know I am hypo and don’t want to prolong it by washing hands and getting finger pricker out.
I also know one of my hypo symptoms is failure to focus on one thing and I am likely to get distracted when I go to wash my hands which prolongs the hypo further.

I have changed by advice on threads with regard to Libre (and other CGM) accuracy. I know say to allows tests highs and lows with a finger prick  _unless obviously low._


----------



## Thebearcametoo

It may be the combination of pizza and all the walking and enjoying himself - walking can cause prolonged hypos. If you have more than 3 hypos then it’s a good habit to allow an extra 10g of carbs with meals for the rest of the day as it’s safer to run a little high than to be low all the time so I would have done that with meals today. Sometimes especially with night time hypos we’ve had stubborn ones that have lasted up to 2 hours and needed multiple treatments. The first aim with that is to stabilise the BG and stop it going lower but it can then take a while to actually come up. You then may end up with a rebound high because of it so I tend to be cautious and check every 20 minutes once stable. I don’t know how much of the 6 overnight hypos were one extended hypo or distinct events (it doesn’t really matter as long as they were treated).  

Some nights are just like that. It’s exhausting for everyone. I hope you all have an easier night tonight.


----------



## SunflowerMama

Thebearcametoo said:


> It may be the combination of pizza and all the walking and enjoying himself - walking can cause prolonged hypos. If you have more than 3 hypos then it’s a good habit to allow an extra 10g of carbs with meals for the rest of the day as it’s safer to run a little high than to be low all the time so I would have done that with meals today. Sometimes especially with night time hypos we’ve had stubborn ones that have lasted up to 2 hours and needed multiple treatments. The first aim with that is to stabilise the BG and stop it going lower but it can then take a while to actually come up. You then may end up with a rebound high because of it so I tend to be cautious and check every 20 minutes once stable. I don’t know how much of the 6 overnight hypos were one extended hypo or distinct events (it doesn’t really matter as long as they were treated).
> 
> Some nights are just like that. It’s exhausting for everyone. I hope you all have an easier night tonight.


I think there is a chance you could be right and maybe some were one event.  We've only ever had one incident previously where we felt like we battled a hypo for about 2 hours.


----------



## Thebearcametoo

SunflowerMama said:


> I think there is a chance you could be right and maybe some were one event.  We've only ever had one incident previously where we felt like we battled a hypo for about 2 hours.


Prolonged hypos can really test your nerve. Especially when it’s the middle of the night. Don’t forget you can call 111 or phone the local paeds ward if you want advice and support through it. As I say as long as I can get it so the BG isn’t dropping more then it’s just a question of time and patience so I just ride it out with my kid making sure I stay awake inbetween tests even if he doesn’t. It can feel very lonely though and my husband is usually snoring through it all.


----------



## SunflowerMama

My son had his first Hba1C today and it was 6.  So a good start.


----------



## SunflowerMama

Having another tricky blood sugar time since about 3ish.  This week's clinic appointment gave us some tips so trying to get them across to my son and been chasing him to test more so we can manage his levels rather than having low after low.  Doing a bit better but hoping this period clears before we go to bed. 

He tried a pancake from the store before bed last night and it seemed to digest at a slower more consistent rate and kept hos levels very good at night.  I hope that's a method that woll work more than once.


----------



## SunflowerMama

It has been awhile since my last post. My son has been doing really well and was rarely having any lows so we were appreciating good night sleeps. 

It seems that his honeymoon period is getting nearer to ending. The tresiba seems to do well enough keeping a baseline at night, but that baseline is creeping higher.  The tresiba is getting adjusted.  

Also his levels are no longer coming down much after the insulin to go with meals so his levels are going up all day.   So, we are waiting a few days after the tresiba change and it looks like his novorapid will need adjusting as well as its not having enough effect. 

I thought the honeymoon period would be longer.  His readings are looking more like one mountain across the day, more or less, rather than several smaller peaks.


----------



## Thebearcametoo

Lots of things can cause rises and it’s not unusual to have to change ratios etc even once the honeymoon period isn’t a factor so try not to get too hung up on how long his honeymoon period is. 

If you’re not confident with doing changes yourself (totally understandable) then upload all the data and send it to the team sooner rather than later as it’s coming up to Christmas when there will be fewer staff around. It sounds like you need to up the basal and then make changes to the bolus and probably the correction factor but be guided by your team as to the specifics. We’ve just upped basal by 10% and increase the correction factor for the afternoon and evening and are giving it a few days to see if it’s enough but my kid has been ill with a virus so his numbers are all over the place anyway. Even with lots of time running high you may still find the HBA1C is decent so try not to worry about highs as long as they don’t make him feel ill. You know changes need to be made so it won’t be forever.


----------



## SunflowerMama

Oh yes, I don't feel at all able to adjust it myself yet.  We are definitely following directions from the diabetic team.  

I do feel like I understand the ups and downs better now but don't want to say anything with certainty yet.  I felt like his pancreas must be producing a lot less this last week but didn't want to assume I knew the cause.  The doctor suggested it seemed he was approaching the end of the honeymoon period. 

So far, I can't imagine a time I will feel confident making changes myself but we have all come such a long way already.


----------



## Thebearcametoo

SunflowerMama said:


> Oh yes, I don't feel at all able to adjust it myself yet.  We are definitely following directions from the diabetic team.
> 
> I do feel like I understand the ups and downs better now but don't want to say anything with certainty yet.  I felt like his pancreas must be producing a lot less this last week but didn't want to assume I knew the cause.  The doctor suggested it seemed he was approaching the end of the honeymoon period.
> 
> So far, I can't imagine a time I will feel confident making changes myself but we have all come such a long way already.


Yeah you will get the hang of it. I will do bolus and basal fairly confidently now but still have a bit of a panic about changing correction factors without guidance. But even then there are times where I’ve made changes and it still doesn’t seem to be doing what I want so I kick it back to the team. They sometimes have a long discussion about what to change and why so it’s not like it’s always clear. And often it’s about fine tuning already decent overall results. 

Hurray for sleep though! It’s one of the things I find hardest is being woken up in the night again. I don’t have all the nice new baby hormones to help


----------



## SunflowerMama

I find it weird how fast or slowly things can change.  When my son had his last clinic appointment, a few weeks ago, they were talking about how he has lows at 3pm every day. 

It feels quick, to me, that now in in the last week or a bit more his levels no longer come down like they did.


----------



## Thebearcametoo

Yeah that may be the end of his honeymoon period or he might have just grown or put on weight. Plus I find that major changes tend to happen within a week or two of clinic which then means you have 2 1/2 months before being seen again


----------



## SB2015

SunflowerMama said:


> I find it weird how fast or slowly things can change.  When my son had his last clinic appointment, a few weeks ago, they were talking about how he has lows at 3pm every day.
> 
> It feels quick, to me, that now in in the last week or a bit more his levels no longer come down like they did.


Your recent posts are showing how much you have got the hang of things, so well done.  Your team are there to help you build the confidence to make your own changes and are clearly supporting you step by step.  

As @Thebearcametoo suggests download your sons data and ask for advice.  It doesn’t matter when the changes happen, it is good that you are looking at patterns and seeking advice.  

Things do change for a variety of reasons, and it can be hard to work out what the cause is. I know that when my honeymoon period ended I was pleased as things did become a bit more predictable.

You are doing well already.  Keep asking questions.


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## SunflowerMama

I am hoping things become more predictable.  Previously the nurse says after the end of the honeymoon levels are harder to manage but didn't say how.  I don't know what it will look like yet but it always sounded easier to figure out than what the pancreas is doing now. 

Any idea how long "coming out of the honeymoon" tends to take?  I am guessing its not just a consistent drop... Though, this week and a half did seem to start showing a consistent change.  At first we thought it would just adjust but then it got worse instead. 

First it was overly huge spikes and the base has been higher... Then its changing to more like stairs going up.... Well, bumpy poorly built stairs.  Lol


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## rebrascora

I think the honeymoon period varies for different people. For some it rounds the edges off and makes it easier and for others it makes things unpredictable and spikey and difficult to spot patterns and adjust. It seems to be the luck of the draw as to how it affects any one individual. 

As regards the end of the honeymoon period, again, it is quite individual. For me it happened in 3 distinct phases each about 6 months apart although of course I can't be sure I am definitely at the end of the honeymoon period and my pancreas has dried up altogether but it is a year and a half since the last episode where my basal needs drastically increased, so whilst I still need regular adjustment up an down for exercise and illness and stress etc, it fluctuates around that level it went up to 18 months ago. I think children may experience a shorter honeymoon period than adults developing Type 1 later in life, when the onset can often be slower. 

I found the time to increase my basal dose was when I became frustrated with my diabetes and was regularly having to inject corrections to keep levels in check. It was probably just after my DAFNE course that I started to be more confident of adjusting my basal doses, but I don't think parents or their children get DAFNE education for some reason.


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## Thebearcametoo

rebrascora said:


> I think the honeymoon period varies for different people. For some it rounds the edges off and makes it easier and for others it makes things unpredictable and spikey and difficult to spot patterns and adjust. It seems to be the luck of the draw as to how it affects any one individual.
> 
> As regards the end of the honeymoon period, again, it is quite individual. For me it happened in 3 distinct phases each about 6 months apart although of course I can't be sure I am definitely at the end of the honeymoon period and my pancreas has dried up altogether but it is a year and a half since the last episode where my basal needs drastically increased, so whilst I still need regular adjustment up an down for exercise and illness and stress etc, it fluctuates around that level it went up to 18 months ago. I think children may experience a shorter honeymoon period than adults developing Type 1 later in life, when the onset can often be slower.
> 
> I found the time to increase my basal dose was when I became frustrated with my diabetes and was regularly having to inject corrections to keep levels in check. It was probably just after my DAFNE course that I started to be more confident of adjusting my basal doses, but I don't think parents or their children get DAFNE education for some reason.


We don’t do DAFNE but I think go over similar things. We had a DSN and dietician visit several times in the first 6 weeks 

@SunflowerMama i found it hard to pinpoint the end of the honeymoon period because of the ago my kid was we had lots of growth spurts and his ratios were changing every couple of months anyway. It was definitely less than a year confirmed by the blood tests though 

Two of the things our team suggested about changing ratios is to change the basal by 10% at a time then wait 3-4 days and do another 10% if needed. This presumes that overnight remains stable and you’re not bringing levels down with the basal while there’s no food. Then once you think you’re close with the basal deal with breakfast ratios. If he’s in target before breakfast then you don’t have to worry about correction factors being involved. Once breakfast is ok do the same with lunch etc. It took me a very long time to get to grips with correction factors and I still couldn’t explain it to someone else but I’m happy that I know what to do but these are the thing I fiddle with the least. 


And levels being harder to manage after the honeymoon period just means he will need more insulin rather than it will be less predictable.


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## SunflowerMama

Tresiba is still 8 (changed at the start of the week) and novorapid has been changed to 1:7.5.  Today is the first day on that dosage and so far completely in the green.  His base average from tresiba is still on the higher side of the green zone but looks very good with the novorapid change.


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## SunflowerMama

Waiting on the nurse's answer but wondering your experience. 

So, my son is now having more novorapid.  I have noticed the same biscuit he used to have as carbs after a low is causing his level to shoot up more than it used to.  Are carbs for lows something that gets adjusted too?


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## Thebearcametoo

Rebound carbs can be hard to judge as it all depends on how quickly he was going down, how soon he got hypo treatment, how much of that treatment was needed to bring him back up and from there what the effect of the biscuit was. I wouldn’t bother too much about whatever happens post hypo. If you’re seeing a lot more hypos then working out why that’s happening is useful.


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## SunflowerMama

I've messaged the diabetic nurse to look at my son's readings as I assume stuff needs adjusting again. 

A question for your experience though or is this just a coincidence. My son's most tricky food is pasta and he rarely eats it. 

Tuesday I decided it was time to try it again and see if we can handle it better.  He did a split bolus and all. Basically, its not really come down since.  His novorapid seems to bring his levels down to what they were before eating but as that was high everything is staying high.  Surely that can't still be the pasta two days on doing that as it will long since have been digested. 

Is this another bump on the way out of the honeymoon period?  I assume a tresiba issue? 

Attached the overnight chart.  Before Tuesday hid nights were lovely zig zags in the 6s and 7s all nightm


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## SunflowerMama

The nurse said wait a few days to see if a pattern emerges. 

My son had PE today which caused a low way after the fact.  So far that seems to have brought his levels down again.  Hoping they stay.


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## SunflowerMama

How bizarre.  It looks like PE knocked the line down again.  Will see what happens during the day now.


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## Thebearcametoo

That’s good if it’s sorted. Sometimes exercise can act as a physical correction (pushing the glucose into the cells without the need for insulin). You would have got there with insulin corrections too. Stable highs overnight can be because of not enough insulin to carbs the previous evening or can be a sign of illness or if sustained over a few days/week a sign that basal needs adjusting.


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## icowden

SunflowerMama said:


> A question for your experience though or is this just a coincidence. My son's most tricky food is pasta and he rarely eats it.


A good pasta trick is to cook the pasta as usual, scoop it out of the pan into a sieve and then run cold water over it (or dunk in cold water for a few minutes).  Then throw it back into the pan to heat it back up.

The science is here:-
https://www.bbc.co.uk/news/magazine-29629761

But essentially reheated pasta reduces the rise in blood glucose by 50% compared to fresh hot pasta.


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