Newbie Hello there

[She80sBaby]

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

 

[Northerner]

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 🙂

 

[HOBIE]

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 🙂

 

[She80sBaby]

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?

 

[She80sBaby]

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.

 

[Northerner]

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 🙂

 

[HOBIE]

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" 😎

 

[trophywench]

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}}}

 

[She80sBaby]

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.

 

[She80sBaby]

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

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" 😎

 

[She80sBaby]

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}}}

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.

 

[Flower]

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 🙂

 

[Bronco Billy]

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?

 

[She80sBaby]

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 🙂

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.

 

[She80sBaby]

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?

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.

 

[trophywench]

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 ……

 

[Northerner]

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'.

 

[Madeline]

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.

 

[She80sBaby]

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 ……

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.

 

[She80sBaby]

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.