a hard lesson

Status
Not open for further replies.
B

bev

Well-Known Member
Relationship to Diabetes
Parent
Hi all,

Well, we are back from holiday and we all had a brilliant time. A went on the DUK holiday and he loved it.
I am too tired at the moment to go into detail about it - so will start another thread tomorrow for any parents who are interested.

The 'best' thing about his holiday (from my point of view) - is that there was a 15 year old boy who was diagnosed 8 years ago - and has been 'high' ever since - resulting in his hba1c being 18!😱Very sadly he is already blind in one eye and walks with a limp as he has something wrong with his foot. They are checking him for neurothopy etc...A was very upset about this boy and told me he is 'silly' for abusing his diabetes this way as he will probably be completely blind and get gangrene in his feet before he is 20' - when i describe this as 'best' i mean it in the sense that all the advice in the world could NEVER have as much impact as this poor boy suffering complications already - at the age of 15....

It seems that the boy had no idea about carb counting or any method of working out his food intake - so just guessed his insulin etc - and sadly his poor mother is wheelchair bound and has her own health problems - but it makes me wonder what on earth his diabetes team is thinking letting him carry on like this? Also, this boy randomly ate food thinking he was ok to eat 'snacks' - but A told me that he had 4 slices of toast and a bowl of cereal with milk for a snack without bolusing! It makes me want to cry for this boy - and makes me angry that its been allowed to happen.

Anyway, hope your all ok and will try to read your posts to catch up on how you all are.🙂Bev
 
hi ben nice to see your back and had a fab holiday you where missed , such a sahme of that boys plight the sounds like on of the worst cases of neglect , this boy needs help help and more help
 
Hi Bev - back already?😉

It is a very harsh lesson indeed, and like you I am appalled to think that his supposed 'healthcare' team have so completely avoided educating and helping him. An A1C if 18???? Horrific! 😱

You might be buoyed up by a report I read today that there have been huge reductions in the number of Type 1s with complications:

http://www.epgpatientdirect.org/new...type-1-diabetes-patients-suffer-complications

Glad to hear that you and A had a good holiday - did he spot you lurking by the beach huts?😉
 
Hi Bev

Welcome back and glad you had a great holiday...and A had a fab time too..:D

This is a very sad thing to happen to a young boy..with all his life ahead of him...He has truly been let down by all who treat and support him..and unfortunately having to deal with the consequences...it is totally appalling...But also part of me is wondering if he has also played a minor role in this..by maybe refusing to accept his diagnosis etc...possibly pushing the boundries a little and possibly choosing to disregard and ignore advice...What ever the circumstances surrounding this young boy..its a crying shame...and I too am angry that he has been let down.

Having said that I am aware of a young boy...about 17..who has 3 times over the past year put himself in a coma with DKA... now has kidney problems..He got wise to testing other food stuff for BG readings to enter his book.....But it still begs the question what on earth were the parents doing or not doing

Heidi
xx🙂
 
I know what you mean Bev. I've read all about the complications etc and I just don't want them to happen. Despite that carb counting as you and I now know it is a relatively new things to come around. It's been made possible by huge leaps forward in insulin developments. I know, I've seen alot of them despite having type one for thirteen years. Alot has come on in that time. Over the past year or so is when carb counting has been mentioned for the first time ever to me. I just used to guess my insulins and had very rigid dose regimes which quite probably did more harm than good. Back when I was diagnosed in 1996 it was a case of two jabs a day. Things soon moved on pretty quickly to 4 jabs, I think that happened late 1997/1998. Like I say, there have been huge leaps in the technology. Only now can we really carb count with good effect, i.e. tailoring insulin requirements to the induvidual's food intake and working out when they need more insulin.

I can guess that A's meeting this boy has really made a profound impression on him. I know that when my Dad told me that his father, a type two had gone onto Kidney dialysis had a fair impact on me despite not having seen the old boy for coming up to a decade now. I just thought I don't want that to happen to me. It also does make you realise that the quality of teams througout the country can vary hugely. I'm very lucky with the Eastbourne team; even so there have been some bad patches such as the last few years I had with the children's clinic but now I'm with the adult clinic things are so much better.

Tom
 
The Ac1 of 18 is horrific....😱...I would collapse if Nathans was up there...But as you are aware through our phone conversations....there are a few teenagers in Nathans clinic with Ac's up in that region too.

Heidi
xx:D
 
sasha1 said:
The Ac1 of 18 is horrific....😱...I would collapse if Nathans was up there...But as you are aware through our phone conversations....there are a few teenagers in Nathans clinic with Ac's up in that region too.

Heidi
xx:D
Click to expand...

Mine's been gradually going up to 9% at the moment. I can't ever recall a time when it's been below 8%. Though I have been fortunate.
 
Hi Bev

Good to have you back and so glad all went well. 🙂

What a sad story about the 15 year old. I second what you and the others have said about how let down this boy has been. It makes me just want to weep. Just too, too sad. :(

Catch up soon. Mand x
 
Gosh thats awful. An A1C of 18! 😱 In a way I feel sorry for that boy, 15 and with so many complications already, and I guess whilst in part it may be down to him it may be down to his healthcare team as well. Yet another part of me is angry, how someone can let themselves get like that and be so selfish! And then there's the other part of me that iupon reading that, makes me want to break down and cry - I'm terrified of getting complications and am working so so hard to get my A1C down lower so in my mind is really beggars belief when someone so young can let themselves get so bad :(

I just don't know what to think.

I'm glad A had a good holiday though, despite the difficult lesson there. DUK holidays have always been brill, i used to love em as a youngun!
 
That's extremely sobering, to say the least. I can't imagine what that boy is going through - as someone else said, you would think that his team would have intervened. But I suppose we can only make assumptions. I'm worried enough about my own HbA1c, which is 8.8 on last check....but to have one of 18.
 
Hi Bev!

We've missed you. 🙂

You've missed the pictures of KB!! :D

On a serious note, Bev, I'm really pleased you and A had a fab time away.

The story of the 15 year old has made me lost for words. I'm deeply moved. I'll say a prayer for him at church later on today. Let's hope my prayer is heard.
 
That is a very sad story. Such a shame the parent/s have let this happen. I think almost no blame lies with the poor boy, I hope that he is soon able to take over his own care and make the changes he needs to halt these complications.
 
I finally got round to reading this thread.

It is sad the boy has been left to get on with it on his own. As an adult and type 2 I find the going tough sometimes, so what must this lad be going through. He has his mums health problems plus his own plus growing up plus exams.

I was going to say the support system must be rubbish, but for something to be rubbish it has to be there in the first place.

It is shame the mums here (me included) can't rally round to help this lad. It wont stop what has already happened to him, but it would make the rest of it bearable for him.
 
Hi bev,
nice to see you back 😉 hope you had a nice holiday!
that story is so shocking and sad I can't imagine what levels he must have to have a hba1c of 18!

emma x
 
Hi Bev,

Great to see you back of course, we have missed you!

Yes, did A find out about your covert operations not that far away in the beach hut??!

Im saddened as everyone was obviously, to hear the story of the young boy. Gppdness only knows what it must be like living with an A1c that high?? He must be constantly symptomatic and I bet it makes his life extremely hard and feeling unwell all the time. I suppose if we can pull positives from this, at least he is in the loop with the DUK holiday and hopefully drawing on their services and input. I hope he gets better with the education and a1c. Poor fella.

Glad to see you back anyhooooo.......! xx
 
What an awful story. You can only hope that someone responsible on the DUK camp will keep in contact with him & help him learn to manage his control - if he's never been taught to carb count, what he can / can's snack on & how to calculate his insulin requirements then that is an absolute scandal. I'm just horrified that social situations don't seem to be factored into care like this (meaning, single, disabled parent who is presumably struggling/unable to help). It just sound like because he doesn't have a 'champion" like the lucky lads & lasses whose mums are on this forum, he has slipped through the cracks. How can he be expected to care for himself if he has not been educated & supported? I can't imagine that given his current health he wouldn't now be willing to learn?!! Awful, awful situation. Poor kid.
 
Status
Not open for further replies.
Back
Top