# Newbie Hello there



## She80sBaby (Apr 6, 2019)

Hey guys hoping to get some advice as a lost parent of a child with type 1.


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## Northerner (Apr 6, 2019)

She80sBaby said:


> Hey guys hoping to get some advice as a lost parent of a child with type 1.


Hi @She80sBaby, welcome to the forum  How long has your little one been diagnosed? There are lots of friendly knowledgeable people here who will be happy to help with any questions you may have - many of them diagnosed themselves as children or parents, like you


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## HOBIE (Apr 6, 2019)

Hello She80s Baby. I an so so sorry. T1 & T2 are so different & I I was diagnosed at 3yrs old & have lost a few of my mates who where diagnosed at the same time as me. You must have been through a lot. It is very hard even when its you keep bg right, Diabetes is a weird illness. Please don't blame yourself one bit. Thinking of you


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## She80sBaby (Apr 6, 2019)

Northerner said:


> Hi @She80sBaby, welcome to the forum  How long has your little one been diagnosed? There are lots of friendly knowledgeable people here who will be happy to help with any questions you may have - many of them diagnosed themselves as children or parents, like you


Hey she has been diagnosed for a year now. That's what I'm hoping frustrating had lead me here as I'm hoping people have some knowledge of what she's expereiencing. As recently she seems to be so up down with her levels which seems to directly affect her behaviour. So as you can imagine school is more than a challenge. How long have you been disgnosed?


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## She80sBaby (Apr 6, 2019)

HOBIE said:


> Hello She80s Baby. I an so so sorry. T1 & T2 are so different & I I was diagnosed at 3yrs old & have lost a few of my mates who where diagnosed at the same time as me. You must have been through a lot. It is very hard even when its you keep bg right, Diabetes is a weird illness. Please don't blame yourself one bit. Thinking of you


Thank you that is a long time. How did you find the teenage years in particular?
 I think we've gotten our heads round it quite well but now the issue is around behaviour and glucose levels. Trying to understand what is diabetes related versus what is teenage behaviour is soooo hard.


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## Northerner (Apr 6, 2019)

She80sBaby said:


> Hey she has been diagnosed for a year now. That's what I'm hoping frustrating had lead me here as I'm hoping people have some knowledge of what she's expereiencing. As recently she seems to be so up down with her levels which seems to directly affect her behaviour. So as you can imagine school is more than a challenge. How long have you been disgnosed?


I was diagnosed much later in life, aged 49!  I didn't have to grow up with it, as your daughter is doing, but the good news is that things are improving all the time - even in the 10 years since I was diagnosed I have seen huge advances being made in treatments and technology, and so much more is known about how to manage things well. And, of course, there are sites like this that offer great support that you wouldn't have been able to find not so long ago (this forum actually started 4 months after my diagnosis).

What insulin regime is she on, and is she using pens or a pump? How old is she (if you don't mind saying)? There's a really excellent book called Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - if you haven't heard of it, I would highly recommend getting hold of a copy, as it covers all aspects of living with Type 1 diabetes and is written in a very friendly, positive and accessible way, great for reference or just to help guide you to what sorts of things might come up in future so you know what questions to ask and what to look out for 

Although it is serious, it is something that can be managed very well, so try not to worry. It all takes a bit more planning, but there's no reason it should stop her doing anything she wants to achieve in life


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## HOBIE (Apr 6, 2019)

She80sBaby said:


> Thank you that is a long time. How did you find the teenage years in particular?
> I think we've gotten our heads round it quite well but now the issue is around behaviour and glucose levels. Trying to understand what is diabetes related versus what is teenage behaviour is soooo hard.


I have Never been unemployed in my life, worked since 2 days before my 16th birthday as an Electrician. All over the country. I too have two Kids & would not be without them. My parents have done a good job on me so please ask if in doubt. Have a look on Pump section "Love my Pump"


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## trophywench (Apr 6, 2019)

I assume you know that monthly hormones send BG up without any added grief from anywhere else - if not, it usually happens mid week before the period starts and goes back down to normal again pretty quick after that.  Hence all females - or their mums! - have to assess the effects of that and adjust insulin accordingly.

Any kind of stress whether mental or physical can send BG up or down and that plays havoc with the brain and hence behaviour.

I wasn't a child when I was diagnosed - I was 22, married and we were in our own house.  However sometimes for no reason or warning for a few years after that - I'd have a meltdown of self-pity which for me as an adult would emanate in floods of uncontrollable tears followed by rasping sobbing.  I called it 'an attack of the Why Me's'.  We learned a bit about diabetes in Biology at school so I was perfectly sensible and logical about it - never refused to accept it, knew very well that if muggins didn't deal with it herself - only I would suffer, nobody else, so look after No 1 - BUT I couldn't stop the emotion - nobody can whether you're 7 or 67.  She's still trying to get her head round it, and probably getting the fact more now that 'this' is For Ever and SHE has to deal with it and never ever have a day off.  

Take it from me - HAVING to deal with it RIGHT NOW (cos I'll die - or at least be ill - if I don't) however inconvenient it might happen to be right then - is HARD, mate.

@Sally71 has a daughter and so does @Bronco Billy so I've just given them a shout to see if they can offer any insight for you.

I wish both of you good luck and good judgement - you'll both get there!

{{{Hugs}}}


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## She80sBaby (Apr 6, 2019)

Northerner said:


> I was diagnosed much later in life, aged 49!  I didn't have to grow up with it, as your daughter is doing, but the good news is that things are improving all the time - even in the 10 years since I was diagnosed I have seen huge advances being made in treatments and technology, and so much more is known about how to manage things well. And, of course, there are sites like this that offer great support that you wouldn't have been able to find not so long ago (this forum actually started 4 months after my diagnosis).
> 
> What insulin regime is she on, and is she using pens or a pump? How old is she (if you don't mind saying)? There's a really excellent book called Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - if you haven't heard of it, I would highly recommend getting hold of a copy, as it covers all aspects of living with Type 1 diabetes and is written in a very friendly, positive and accessible way, great for reference or just to help guide you to what sorts of things might come up in future so you know what questions to ask and what to look out for
> 
> Although it is serious, it is something that can be managed very well, so try not to worry. It all takes a bit more planning, but there's no reason it should stop her doing anything she wants to achieve in life


Thank you I will definitely invest in that book. She's 13 now was diagnosed at 12. She's using a pen and prefers it at the momemt.


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## She80sBaby (Apr 6, 2019)

Thank you and nice to see the postives and that it hasn't held you back.


HOBIE said:


> I have Never been unemployed in my life, worked since 2 days before my 16th birthday as an Electrician. All over the country. I too have two Kids & would not be without them. My parents have done a good job on me so please ask if in doubt. Have a look on Pump section "Love my Pump"


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## She80sBaby (Apr 6, 2019)

trophywench said:


> I assume you know that monthly hormones send BG up without any added grief from anywhere else - if not, it usually happens mid week before the period starts and goes back down to normal again pretty quick after that.  Hence all females - or their mums! - have to assess the effects of that and adjust insulin accordingly.
> 
> Any kind of stress whether mental or physical can send BG up or down and that plays havoc with the brain and hence behaviour.
> 
> ...


Thank you so much for this response
 I've heard it can be impacted by so many things and so will monitor more closely in relation to that. I think it is alot of now its sinking in now and her sugar is so up and down it makes it getting her level under control more challenging.


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## Flower (Apr 6, 2019)

Hello and welcome @She80sBaby , glad you've found us 

I was diagnosed at the same age as your daughter but in the 1970's. Diabetes plus puberty is one heck of a roller coaster ride. I was so incredibly bad tempered and rude which is so unlike my general temperament. Puberty is like a whirlpool of emotions and hormones with the added extra of trying to control your blood glucose as best you can. When I was going through puberty there wasn't any home glucose testing but I remember being so cross about everything with my parents nagging me to control my diabetes and me wanting to leave home! I used to walk out of school and be thoroughly disrespectful of anyone who dared to comment or challenge me. Glad to say that although it is a really challenging time on all fronts it does pass and things do settle. 

I did settle down and returned to my relatively calm nature and left home for university. It is a tough ride managing diabetes through puberty but for me it lasted a relatively short time before I felt less angry at the world, my parents, hospital team, school etc.

I realise that doesn't give any new help but hang in there, your daughter still needs you as much as ever but is temporarily under siege by hormones and the challenge of managing her blood sugar through turbulent times.

I wish you both well


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## Bronco Billy (Apr 6, 2019)

Hi She80Baby, welcome to the forum. I have two with type 1, they are both in their teens. My daughter was diagnosed when she was six and my son was diagnosed when he was five.

It’s very true to say that glucose levels affect behaviour. In fact, we use it as a clue that all is not well with the levels. Hormones will be affecting levels too, as will her period. Swinging levels will also play a part as it will leave her feeling terrible. Has she accepted her diagnosis? I ask because her behaviour might be, in part, due to resenting what has happened to her. This was certainly the case with my daughter.

Have you considered asking to be prescribed a Libre? If you can get one of these, you will be able to monitor her levels more closely without the need to increase the number of finger pricks. I know you said she prefers using a pen, but it may be worth looking into the possibility of a pump. Pumps give more flexibility with background rates, which can lead to more stable levels. You can vary the insulin dosage during the day to give more when it’s needed and less when it’s needed. Another option is the Dexcom G6. This is a continuous glucose monitoring system that doesn’t need to be linked to a pump, so it can be used by someone on injections.

May I ask what challenges there are at school? Is the issue with how the school care for her?


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## She80sBaby (Apr 7, 2019)

Flower said:


> Hello and welcome @She80sBaby , glad you've found us
> 
> I was diagnosed at the same age as your daughter but in the 1970's. Diabetes plus puberty is one heck of a roller coaster ride. I was so incredibly bad tempered and rude which is so unlike my general temperament. Puberty is like a whirlpool of emotions and hormones with the added extra of trying to control your blood glucose as best you can. When I was going through puberty there wasn't any home glucose testing but I remember being so cross about everything with my parents nagging me to control my diabetes and me wanting to leave home! I used to walk out of school and be thoroughly disrespectful of anyone who dared to comment or challenge me. Glad to say that although it is a really challenging time on all fronts it does pass and things do settle.
> 
> ...


It really helps more than you know as when you Google you don't get peoples lived lives experiences it talks about mood in relation to recognising a hypo  but not much else. What I'm finding is that it is more like what you described a general change in her temperament. I think she has come to terms with it for the most part however we've just past a year and now it feels like reality has kicked in maybe and she will only share so much with me about it. So when shes acting up at school I'm trying to decide if this is normal teenage behaviour or her overall feelings about what she is going through or her insulin level. Always a relief to hear it doesn't last forever and to hear that you have reached the other side.


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## She80sBaby (Apr 7, 2019)

Bronco Billy said:


> Hi She80Baby, welcome to the forum. I have two with type 1, they are both in their teens. My daughter was diagnosed when she was six and my son was diagnosed when he was five.
> 
> It’s very true to say that glucose levels affect behaviour. In fact, we use it as a clue that all is not well with the levels. Hormones will be affecting levels too, as will her period. Swinging levels will also play a part as it will leave her feeling terrible. Has she accepted her diagnosis? I ask because her behaviour might be, in part, due to resenting what has happened to her. This was certainly the case with my daughter.
> 
> ...


She does have a dexcom g6 and it helps alot she has less lows. I will definitely speak to her about a pump to see how she feels about it all now. 
The challenges at school are around a change in behaviour some of it is purley school stuff bullying boredom in lessons. But the other side is still lack of understanding of behaviour when she is high or low and rven the after affects such as tiredness. So when she is too talkative or snappy and constantly sent out of class it feels like it fuels the problem. So now she seems more disengaged. I even had the head of behaviour for the school say well no other child with diabetes has these issues and how do we know she isn't exaggerating her symptoms.


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## trophywench (Apr 7, 2019)

So how many kids with D does the school have and were they all diagnosed only a year ago at the same age she was, do they have the same teachers, friends (real and virtual) and classmates and the same genes as her?

Good God - the stupid person - every single person in the world is DIFFERENT.  My sister and I were never alike either physically, emotionally or even in the mirror despite having the same parents.

Just wants me to gnash my teeth - it's every bit as ridiculous as me and every one of my close teenage schoolfriends (it later transpired ) when our mother's wouldn't let us do whatever it was they said we couldn't - angrily telling them that they were the ONLY mother in the world that disagreed with whatever it was.  Isn't it? 

Bet they say that to ALL the mothers of misbehaving pupils.

'Head of Behaviour' indeed ……


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## Northerner (Apr 7, 2019)

She80sBaby said:


> I even had the head of behaviour for the school say well no other child with diabetes has these issues and how do we know she isn't exaggerating her symptoms.


That's a pretty poor response in my opinion  People aren't robots, they react differently to similar situations, so it's very unfair to use any sort of vague comparison like this  How about her friends, do they know about her diabetes and are they supportive? Does she know anyone else with diabetes around her own age that she can talk to? If you are on Facebook, you may find the Parents of Children with Type 1 Diabetes in the UK group helpful in finding others in your area. Type 1 is relatively rare in the population - about 25,000 children, plus many who are now drown up or diagnosed as adults - so you can feel a little isolated, and it's possible that she is feeling this too, as it can be difficult to explain to someone who doesn't 'get it'.


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## Madeline (Apr 7, 2019)

Good grief, even on here there’s none of us exactly the same. We are all adults, and we all struggle and need the support we give each other - and for which I need to add that I am SO grateful.


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## She80sBaby (Apr 7, 2019)

trophywench said:


> So how many kids with D does the school have and were they all diagnosed only a year ago at the same age she was, do they have the same teachers, friends (real and virtual) and classmates and the same genes as her?
> 
> Good God - the stupid person - every single person in the world is DIFFERENT.  My sister and I were never alike either physically, emotionally or even in the mirror despite having the same parents.
> 
> ...


Exactly I just felt so frustrated that I'm really trying to ensure that they understand how hard this whole picture is for her and that's the reponse. It was like a slap in the face I was left feeling like they just expect her to act as everyone else regardless of how hard life is or managing this is. It's been playing on my mind all weekend I was so frustrated.  So it feels great to find a place where people get it and are understanding because outside of this bubble it feels like they dont. It helps me to help her when I know it makes sense to others as it leaves you feeling like your going mad. Over analysing things but you know you children.


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## She80sBaby (Apr 7, 2019)

Northerner said:


> That's a pretty poor response in my opinion  People aren't robots, they react differently to similar situations, so it's very unfair to use any sort of vague comparison like this  How about her friends, do they know about her diabetes and are they supportive? Does she know anyone else with diabetes around her own age that she can talk to? If you are on Facebook, you may find the Parents of Children with Type 1 Diabetes in the UK group helpful in finding others in your area. Type 1 is relatively rare in the population - about 25,000 children, plus many who are now drown up or diagnosed as adults - so you can feel a little isolated, and it's possible that she is feeling this too, as it can be difficult to explain to someone who doesn't 'get it'.


Her friends all know and are as support as most 13 year olds. I did start to look on Facebook but there were so many groups I didn't know where to start. I will try that thank you. She did actually say she would rather some people her age to talk about it with so I agree with you feels like shes struggling.


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## Northerner (Apr 7, 2019)

She80sBaby said:


> Her friends all know and are as support as most 13 year olds. I did start to look on Facebook but there were so many groups I didn't know where to start. I will try that thank you. She did actually say she would rather some people her age to talk about it with so I agree with you feels like shes struggling.


That particular group is a good one, it has many of our members and former members (whose children are now all grown up!) in it  They also have a website, but operate largely through the FB page:

http://www.childrenwithdiabetesuk.org/


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## She80sBaby (Apr 7, 2019)

Northerner said:


> That particular group is a good one, it has many of our members and former members (whose children are now all grown up!) in it  They also have a website, but operate largely through the FB page:
> 
> http://www.childrenwithdiabetesuk.org/


Thank you so much for this I will check it out.


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## trophywench (Apr 7, 2019)

Is her DSN understanding of your challenges, properly I mean?

If so can she help by talking to the school again and explaining more clinically to attempt to get it to sink in? (I presume she did that 12 months ago - did she?)


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## Bexlee (Apr 7, 2019)

Hi She80sBaby.

Make an appointment and go into see the school. Maybe the form tutor or head of year / house is the starting point THEN see head of behaviour and point out its not a behaviour issue. You’ll have to explain clearly the facts of how your daughter is finding things. Our school wasn’t great at one point so somehow miraculously the paediatric diabetic specialist nurse appeared and helped to sort things out. Training all round and an understanding among staff. Followed by refreshers from me regularly! And a loud voice when they try an implement something stupid!

Things should and must be put in place to help and support. In my school we have 5 children with diabetes ALL different and ALL supported in different ways with a set place to go if needed for additional help or 5 minutes out accompanied by another selected student. Every now and again a student needs to take me to the allotted place - allows the kids to see its ‘normal’ and sometimes we need assistance and they know vaguely what assistance it is and occasionally it explains why miss is a bit snappy or unreasonable!!


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## She80sBaby (Apr 7, 2019)

DSN? Is that her hospital team.? I have briefly explained but that was prior to this meeting. Wasn't sure if it would be worth me checking in with them again to get them to maybe approach the school because as you say last contact was 12 months ago.


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## Bexlee (Apr 7, 2019)

Yes get the hospital to get in touch with school. Or ask nurse to go into school either with you or on your behalf. Maybe your daughter would prefer to be or not be there. There must be someone in the school responsible for medical needs maybe the SENCo (speacial educational needs coordinator) or learning support department - it’s not a special educational need (SEN) but it’s  often the SEN department who do the medical care plans - which she should have and staff should be aware of and the department who train staff.


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## She80sBaby (Apr 7, 2019)

Bexlee said:


> Hi She80sBaby.
> 
> Make an appointment and go into see the school. Maybe the form tutor or head of year / house is the starting point THEN see head of behaviour and point out its not a behaviour issue. You’ll have to explain clearly the facts of how your daughter is finding things. Our school wasn’t great at one point so somehow miraculously the paediatric diabetic specialist nurse appeared and helped to sort things out. Training all round and an understanding among staff. Followed by refreshers from me regularly! And a loud voice when they try an implement something stupid!
> 
> Things should and must be put in place to help and support. In my school we have 5 children with diabetes ALL different and ALL supported in different ways with a set place to go if needed for additional help or 5 minutes out accompanied by another selected student. Every now and again a student needs to take me to the allotted place - allows the kids to see its ‘normal’ and sometimes we need assistance and they know vaguely what assistance it is and occasionally it explains why miss is a bit snappy or unreasonable!!


I did have a meeting with them Friday and it involved the head of year, tutor and first aid aswell as the behaviour management manager. I did regret not bringing someone from the team with me to be honest. I became quite upset more out of frustration than anything. He was speaking the most even thought I felt that the others understood it from my perspective as they know my daughter.
It became a behaviour issue mainly because she is getting in trouble a lot recently and I feel that how they are dealing with it is quite harsh as it feels like she acting out. Some is to do with school drama that she feels wasn't dealt with fairly. However one particular incident they called me to say she had been rude to a teacher. Turns out her sugar was 2.3 at the time, even though they cancelled her punishment I had already been informed (had told her off) so an apology a day later when it came to light is not really going to change how she was made to feel. Finding out her sugar was low was purely by accident as I felt that something was up with her so contacted the school. It just feels like discipline with no understanding.


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## She80sBaby (Apr 7, 2019)

Bexlee said:


> Yes get the hospital to get in touch with school. Or ask nurse to go into school either with you or on your behalf. Maybe your daughter would prefer to be or not be there. There must be someone in the school responsible for medical needs maybe the SENCo (speacial educational needs coordinator) or learning support department - it’s not a special educational need (SEN) but it’s  often the SEN department who do the medical care plans - which she should have and staff should be aware of and the department who train staff.


The challenge is the lady who deals with first aid is excellent very understanding but BMS (behaviour management services) have the final say about discipline so when she rude because she's tired or fed up about anything and gets sent out of class they step in and that's were is all seems to go wrong. I will give them a call tomorrow though as it feels like it is unresolved and I don't like where it is heading. Thank you.


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## Bexlee (Apr 7, 2019)

That doesn’t sound a nice situation. How does she monitor and test at school?

 Our diabetic kids go to a set place at break and lunch. Test and tell the lady their number she writes it down (they all have a clipboard with levels on for the whole year as it were) and they correct if needed or arrange to come back 30 min or one hour later to recheck or mums and dads are rung to ask advice. This improved significantly after the nurse popped in to do a check and ideas were put forward.

I often go and ‘stick my nose in’ (I’m good at that!) to show support and tell them what level I’m on etc. I hope they view it as if miss can deal with it so can I.

We can’t always use low levels as an excuse and I’m not saying she is but some people have no idea about it or understanding of how it can actually make you be if you are that low. There should be an understanding that if that’s the reaction you got from X and you don’t usually get that reaction somethings not right wonder what oh they’re diabetic let’s get them to check levels, treat or get help

I assume you’re possibly on Easter holidays now?  If so try and speak to the hospital team while you’re off and see if they can arrange to help you after the holidays. Maybe an idea for you and your daughter to write a plan out of what you’d like and take it with you. The school
Should discuss it and implement if they possibly can.

Believe me as an adult in a school I’ve had to battle for understanding at times.

Maybe behaviour support need educating and there needs to be “reasonable adjustment”


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## Bronco Billy (Apr 7, 2019)

She80sBaby said:


> She does have a dexcom g6 and it helps alot she has less lows. I will definitely speak to her about a pump to see how she feels about it all now.
> The challenges at school are around a change in behaviour some of it is purley school stuff bullying boredom in lessons. But the other side is still lack of understanding of behaviour when she is high or low and rven the after affects such as tiredness. So when she is too talkative or snappy and constantly sent out of class it feels like it fuels the problem. So now she seems more disengaged. I even had the head of behaviour for the school say well no other child with diabetes has these issues and how do we know she isn't exaggerating her symptoms.




It's great that she has the G6 and that it is making a difference. A pump isn’t for everyone, but she will be able to trial one before deciding whether or not it’s right for her. If she doesn’t like it, she won’t have lost anything. If she does like it, who knows what she will gain.

It sounds like the school is making the classic mistake of assuming everyone with the same condition requires the same care. As we all know, that is a million miles from the truth. The document below is statutory guidance, you may find some useful information in it that will help the school change its ways. As well as many other things, it requires schools to treat everyone with the same condition as individuals and not assume they are all the same. There is a section on the forum called Diabetes in Schools. If you need advice about a particular issue or there is something in the document you need clarification on, this board is the best one to post on. Have you considered meeting with the school to discuss the issues? Often school staff don’t ‘get it’, but are happy to change when they are made aware of their responsibilities and the realities of type 1.

https://assets.publishing.service.g...-pupils-at-school-with-medical-conditions.pdf

There are lots of Facebook pages – probably too many, if I’m honest, but may I take the liberty of recommending one in particular? There is an organisation called The National Children and Young People’s Diabetes Network. It is split into regions and was established to improve care and long term outcomes for children with diabetes. Each region has its own Facebook page managed by the parent reps (who are actually parents of children with the condition) of that region. In fact, I am a parent rep for my region. Your regional page is a good one to join, all you have to do is search for, for example, West Midlands Paediatric Diabetes Network, and then apply to join. They are groups for families only, medical professionals do not have access to them.


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## She80sBaby (Apr 8, 2019)

Bexlee said:


> That doesn’t sound a nice situation. How does she monitor and test at school?
> 
> Our diabetic kids go to a set place at break and lunch. Test and tell the lady their number she writes it down (they all have a clipboard with levels on for the whole year as it were) and they correct if needed or arrange to come back 30 min or one hour later to recheck or mums and dads are rung to ask advice. This improved significantly after the nurse popped in to do a check and ideas were put forward.
> 
> ...


I do think she needs to feel comfortable sharing with them how it affects her because there does seem to be a massive lack of understanding and coming from the professionals is probably better. Its hard ro seperate from the frustration when it's your child. I agree a plan with my daughter will be important too.


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## She80sBaby (Apr 8, 2019)

Bronco Billy said:


> It's great that she has the G6 and that it is making a difference. A pump isn’t for everyone, but she will be able to trial one before deciding whether or not it’s right for her. If she doesn’t like it, she won’t have lost anything. If she does like it, who knows what she will gain.
> 
> It sounds like the school is making the classic mistake of assuming everyone with the same condition requires the same care. As we all know, that is a million miles from the truth. The document below is statutory guidance, you may find some useful information in it that will help the school change its ways. As well as many other things, it requires schools to treat everyone with the same condition as individuals and not assume they are all the same. There is a section on the forum called Diabetes in Schools. If you need advice about a particular issue or there is something in the document you need clarification on, this board is the best one to post on. Have you considered meeting with the school to discuss the issues? Often school staff don’t ‘get it’, but are happy to change when they are made aware of their responsibilities and the realities of type 1.
> 
> ...


Yes it really wouldn't hurt to try and I'm sure it's more about what were comfortable with at the moment. I will have a look at the link because I think that would be a good place for me to see if they are on fact meeting their responsibilities. All the advice on this thread so far has been brilliant. Thank you.


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## She80sBaby (Apr 8, 2019)

I've just read through that link on school responsibilities and it has helped so much. It highlights their responsibility to her mental health and their requirement to ensure she isn't falling behind. It also states several times that all children's needs will be different. 

Thats exactly the concerns I tried to raise so thank you so much for that.


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## SB2015 (Apr 8, 2019)

When working with school with has student with T1, I met one student wh showed me cards that she had made.  

One was amber, which said ‘I am having a hypo. Please leave me to manage it’.  
She put it on her desk, it warned staff to let her treat it and just sit and get back up.  
She put the card away once she had got levels back up.  
She also had a red card which meant she was very low, and friends knew this was when they asked the teacher to stop and  help.

The student liked these as she didn’t want a fuss, didn’t want to leave the lessons, but needed to be allowed to do nothing, not be asked a question, ... It also warned staff that her behaviour may be different.

I don’t know whether anyone else has experience of using these.


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## She80sBaby (Apr 8, 2019)

SB2015 said:


> When working with school with has student with T1, I met one student wh showed me cards that she had made.
> 
> One was amber, which said ‘I am having a hypo. Please leave me to manage it’.
> She put it on her desk, it warned staff to let her treat it and just sit and get back up.
> ...


That's a really great idea ....thank you for sharing


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## SB2015 (Apr 8, 2019)

Hi @She80sBaby 

As others have said the school should not assume that all people with Diabetes will behave in this same way!!
Like others have said I would suggest contacting your hospital team.  They will have visited many schools and will have other ideas of useful strategies.

There was just one other person with T1 in the schooI was teaching in, and she was a bit older but we worked together on a plan with the school nurse, and a care plan was put in place.  All staff needed to be aware of the agreed plan, and the most important thing we both felt was to allow her to test and manage her levels whilst in the lesson, and if she needed to leave there always a friend to go with her.


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## Sally71 (Apr 8, 2019)

Can your hospital team put you in touch with any other families with T1 kids of a similar age?  It's nice if you can get together with similar families, then the children feel more normal and can all test and inject together and discuss their condition with others who are just like them.  Or not, if they'd rather just play games and do things that non-diabetic children do.  And it's nice for the adults to get together and have a moan with other people who really do understand, you realise that other people have exactly the same worries and issues as you do and you can swap stories and suggest solutions.

I'd definitely get your DSN (diabetes specialist nurse) to visit the school to back up your argument, and explain that if your daughter is playing up they should check her blood sugar first, if it's normal then you can probably put that one down to a normal teenage outburst, if not then obviously she needs help not punishment! Might counselling help her too?  Our diabetes team includes a counsellor who is specifically trained in diabetes so she understands exactly what sort of problems and worries it can bring.

Also, she's only been diagnosed a year, even though on the face of it she's doing very well with it, underneath she might still be coming to terms with the fact that this is her life now and it's completely relentless and she can never have a day off from it, that's one of the hardest things to get used to I think.  And you need to grieve for your old life that you no longer have, it took me 6 months before I could cry at all and then another 6 months before I really let it out properly, and I'm not the one with it!  I dread to think what it was like for my daughter, she didn't like talking about it 

Schools really vary, at primary school my daughter's class teachers were always very good once I'd gone in and explained things to them at the beginning of each year, we did have some issues with other staff though who thought they knew better than I did how to manage my child's medical condition and wouldn't listen when I tried to explain, which was rather annoying and spoiled things somewhat for her a couple of times.  Also I think the friends who grew up with her got bored of her being different and weren't particularly sympathetic, in fact in year 6 some people still thought it funny to hide her bag with all her test equipment and hypo treatments in  (she didn't tell me about that until after she'd left that school and it was too late to do anything about it, probably because she knew I'd have gone absolutely mental...). When it came time to transfer to secondary school I was dreading it, in the end she didn't go to the local secondary school with everyone else, but to another a bit further away where she knew no-one else at all, and it turned out that having a completely fresh start is the best thing she ever did.  She has some fab friends now, some who can spot hypos before she can, and the school are really supportive and have got the diabetes absolutely nailed, so we have been lucky.  She has a medical pass so that teachers have to let her out of the lesson to go to the medical room at any time if she feels unwell, and a toilet pass so they have to let her go to the loo if she needs to (particularly if she's very high). She gets priority at lunch time too, and in exams can sit in a smaller room instead of the main hall and can have the clock stopped if she has to deal with anything diabetes related in the middle of the exam. Daughter now seems much more confident and doesn't mind so much talking about her diabetes now, at primary school she really couldn't stand being different and hated having to talk about it to anyone.  She has just been on a 4-day school trip to France, had a whale of a time and came back with all sorts of stories (which she obviously found highly amusing) about how nervous the staff were when she was doing her pump refill, how most of the children on the trip had a real education about what diabetes is and were making comments about "I've never seen anyone being force-fed cola before" etc, how the only female staff member was a science teacher who said that when diabetes comes up on the curriculum in year 10 she will let my daughter run the class if she happens to have her then, and so on.  Such a change in my daughter's attitude, she has had over 6 years now to get used to it but also the change of school was amazing.  I hope you can get your daughter's school on side too, it really helps!

I can't think of anything else to add at the moment, but I hope you can sort something out with the school.  Good luck


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