• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

makes me sad

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
B

bev

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
Hi all,
Today A went on a school adventure day. One of the children from the other year group got talking to him and it turns out he is diabetic too. A asked him did he do injections - the boy said 'well doh - how else would i get insulin'? A promptly got his pump out and explained it all - the boy was amazed - he had never even heard of a pump before!`.:D:
A then asked the boy what his hba1c was - and was told it was 14!!!!!!!
A said to him 'you do realise that this may cause complications'?. This is the saddest part - the boy didnt know that 14 was high and also didnt realise this will lead to complications....😱This breaks my heart to think he is running so high and he is only 11 (the same age as A) - then i realised he probably goes to our clinic - i am horrified that he has been allowed to get this bad! I just want to bring him home and make it all better for him...😡Bev
 
Similar story here. I was chatting to a colleague at work a few nights ago and he noticed I was diabetic. He said he had a type one friend. Gave me the fright of my life when he said this guy would play football with his bloods running in the thirty's and that he was still on some pretty old insulins like NPH (the cloudy one.)

It's a terrible thing to see someone with an HbA1C that high, it does move me as he seems to know nothing. I'm scared that his parents don't do as much as they should to help or heed warnings from the team he sees. So young yet with something as bad as that.
 
As a parent, if any of my children were diagnosed with any sort of condition, I would do everything I could to learn about it and how to deal with it.
It's such a shame that there are others out there who don't seem to take the same attitude. I'm most impressed at the knowledge of some of the parents here though.
 
Oh thats so sad Bev. On a brighter note, everytime you post something on A and what he has said or done, I become more proud! (I feel like I know him!). There are many grown-ups in this world that couldnt have had that simple conversation- I hope that doesnt sound patronising, he is obviously able to talk about his diabetes completely appropriately and with knowledge and confidence. Good lad!

I sponsor a child in india with type 1 diabetes to help pay for her insulin. I sponsor her along with 5 other people and she now has 2 injections a day. I cringe to think what her HbA1c is. I suspect she hasnt had one.

Its so devestatingly sad. I think all we can do is love and care for the ones we can as much as we can.

x
 
Hi Sugarbum,

Id be interested in doing something like that too - is there a website?

Bev - it is scary to think there a people out there, young and old, who have such little knowledge about their condition. Lets hope Alex has made him think and he might ask a few more questions at his next appointment.

x
 
It is called the dreamtrust...

They are very pleasant people and are grateful for any amount, whatever people feel they can afford. You may have already have heard of them as they are the people that take unwanted/unused diabetic supplies, including insulin.

Details are on the website http://www.dreamtrust.org/
 
Sugarbum said:
It is called the dreamtrust...

They are very pleasant people and are grateful for any amount, whatever people feel they can afford. You may have already have heard of them as they are the people that take unwanted/unused diabetic supplies, including insulin.

Details are on the website http://www.dreamtrust.org/
Click to expand...

that is an utterly fantasic charity! I really wish I could afford to sponser a child or help out. I'm half tempted to send them a couple of boxes of stuff!
 
Sugarbum said:
It is called the dreamtrust...

They are very pleasant people and are grateful for any amount, whatever people feel they can afford. You may have already have heard of them as they are the people that take unwanted/unused diabetic supplies, including insulin.

Details are on the website http://www.dreamtrust.org/
Click to expand...

Looks like I've found a way to get rid of the tonnes of 8mm needles I don't need anymore. A very worth while cause.
 
What a star A is! You have a wonderful son there, Bev! But how shocking about this other boy! It really tugs at my heart strings. It makes you wonder just how many kids are out there with so little support. So, so sad and worrying. :(

Lou, what a fantastic idea! I am going to look at the site and see if i could afford to sponsor a child. I would love to do something like that. 🙂
 
Bev, that is really sad. It makes you wonder how he ended up in that sort of state... :(

Sugarbum, thanks for that ink. I've got piles of stuff that (assuming I don't get put back on insulin) I'm never going to need, and the thought if it being wasted really upset me, so I shall send it all off to a good home.
 
Thats great news, it is nice to attract some attension to the Dream Trust, but I feel as if I have hijacked Bev's thread, sorry hon!

Nice to see a main thread has been written on it in the general message board. Gets the word out there....

I feel extremely sorry for this young boy A met. Plays on my mind. I really feel there is some dodgy ground about neglect somehow in all this. Its so unfair on him to be so un well like that in this modern world with so much help and resources. Heart breaking.
 
bev said:
Hi all,
Today A went on a school adventure day. One of the children from the other year group got talking to him and it turns out he is diabetic too. A asked him did he do injections - the boy said 'well doh - how else would i get insulin'? A promptly got his pump out and explained it all - the boy was amazed - he had never even heard of a pump before!`.:D:
A then asked the boy what his hba1c was - and was told it was 14!!!!!!!
A said to him 'you do realise that this may cause complications'?. This is the saddest part - the boy didnt know that 14 was high and also didnt realise this will lead to complications....😱This breaks my heart to think he is running so high and he is only 11 (the same age as A) - then i realised he probably goes to our clinic - i am horrified that he has been allowed to get this bad! I just want to bring him home and make it all better for him...😡Bev
Click to expand...

It makes me sad to read stories like what you posted. I discovered that a lot of diabetics I have met don't understand some simple facts like HbA1c's.

The only good thing is that A might wish to get in touch with this other boy and help him to learn more about getting good numbers.
 
I really don't think it is necessarily the parent's fault that some children with diabetes are like this. I don't think the doctors and nurses always emphasise how dangerous diabetes is because it is a managable condition. If that boy's parents thought his HbA1c would really lead to him going blind, losing a leg etc i'm sure they would do all they could to change. When it comes to children with this kind of HbA1c the hospital should be sending them letters alll the time asking them to attend appointments and talking to the parents about what they can do to make things better. But im sure they are just left to think that the resullt is OK and will do...
 
I understand what you mean Katie - but the odd thing is that he must have the same team as us! The next nearest big hospital is probably over 50 miles away - so i am assuming it is our hospital. I know they werent pleased when Alex's hba1c was 9.5 back in May - so i cant understand how this boy has been left like this. I just hope the boy starts asking questions about his hba1c etc as it would be a crying shame if he remained ignorant of the dangers. 🙂Bev
 
bev said:
I understand what you mean Katie - but the odd thing is that he must have the same team as us! The next nearest big hospital is probably over 50 miles away - so i am assuming it is our hospital. I know they werent pleased when Alex's hba1c was 9.5 back in May - so i cant understand how this boy has been left like this. I just hope the boy starts asking questions about his hba1c etc as it would be a crying shame if he remained ignorant of the dangers. 🙂Bev
Click to expand...

The difference could be that you took things VERY seriously, you listened and you learnt what was important. You would make sure something was changed if Alex's HbA was high. Maybe they were told it was a bit high, but weren't really encouraged to sort it out. I know my diabetes specialist has never said to me "if you dont sort this out you WILL go blind, lose a leg blah blah in future...", instead he has kind of given me 'evils' (lol), ive never been pressured into changing. The only time ive been scared into doing anything was by a GP who said I dont want to see you in 5 years and have to say sorry you went blind. Before that I thought my HbAs were a little bit high, but not high enough to damage me.

Yes I hope he starts asking questions and I hope Alex bumps into him again to see if anything has changed since they last spoke :D
 
Hi all

Picking this up a little late...Bev, it's pretty awful this boy doesn't know what's going on regardless, really! Dreadfully sorry for him and by proxy his family...

However, it's kind of difficult to come by an HbA1c of 14...I think the average levels on the meter would need to be something like 17mmols...! I'm not saying it's impossible, but I'm sort of hoping the boy is maybe a little confused himself (which doesn't bode well, but there you are...)...maybe his average meter reading is 14? This would give him a high HbA1c, but more like 10 or 11 rather than 14.

A is very on the ball. But I can imagine other kids his age who barely register the different terms used...Certainly E has found that he is much more aware than the other boy his age in the school, though the other boy has been diagnosed for several years...

Let's hope anyway, that he's got it a little wrong. Because as you say, an HbA1c like that is just irresponsible, and reflects appallingly on the hospital. Esp as they have been ambitious for your numbers, as you say.

In any case, clearly the boy is in some trouble. I hope A manages to speak to him again...
 
As a parent, I can never undrstand how some people take so little interest in their children.

Slightly off the topic, but hopefully has some relevence, I used to look after my friends children. The little girl used to have nosebleeds. One day when she was with me, the girl had a nose bleed and did what her mother always told her to do and that was lay flat on her back on the floor. I got her to sit on an upright chair and lean slightly forward and after a few minutes produced an ice lolly from the freezer, which did the trick.

When the mum came back and I told her what had happened, she said she didn't want anyone bleeding where she had just cleaned....

Says it all realy.
 
bodily fluids!

I must admit that when our mum heard us being sick as children (happened very rarely), she directed us from the carpeted stairs to a bathroom or kitchen - somewhere with a sink and a wipeable floor.
These days, when we hear our cat being sick, we lift her off the table (shouldn't be there anyway!) or from the carpet to the kitchen floor, as it's easier to clean up afterward.
However correct nosebleed treatment - pinching the nose while sitting head forward - means blood doesn't spread far.
 
I grew up with lino, and just a rug, sobein sick as a kid wasn't so much of a problem. Big boy always kept a bowl or bucket nearby if he thought there was a chance he'd be sick.

We have always treated nosebleeds with an ice lolly on advice of doctor when I was a kid, but agree things have changed, so treatment has changed.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top