# Very sad



## Adrienne

http://www.northern-scot.co.uk/news/fullstory.php/aid/9223


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## am64

Adrienne said:


> http://www.northern-scot.co.uk/news/fullstory.php/aid/9223



now that is very sad.


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## SilentAssassin1642

thats so sad


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## Adrienne

My friends daughter died as well three years ago next May.  It was the day before her 13th birthday.   I never mention it on here (first time) as I don't want to frighten the newly diagnosed parents straight away.   She was type 1 and a 'good' diabetic.  Her mum is type 1 as well.   You can't ever tell if a diabetic dies from a hypo as levels plummet immediately.   They put DIB on the certificate, 'dead in bed' which they can only put for people with diabetes.    We have a tree planted for her at the caravan place in the Cotswolds that we all meet up at every May.    Every time I hear a story like this one in the paper, its a kick up the jacksey that we can't take this diabetes thing laying down.


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## rossi_mac

Sad indeed, and difficult to talk about I guess as it will scare some, but we shouldn't hide it away completely like the article says lets hope some good comes of it.


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## am64

rossi_mac said:


> Sad indeed, and difficult to talk about I guess as it will scare some, but we shouldn't hide it away completely like the article says lets hope some good comes of it.



too right this is real ....what is lacking surely is the support network for teenagers as from previous threads its obvious there is a need. Bless you adrienne you are such a star


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## Sugarbum

Adrienne said:


> My friends daughter died as well three years ago next May.  It was the day before her 13th birthday.   I never mention it on here (first time) as I don't want to frighten the newly diagnosed parents straight away.   She was type 1 and a 'good' diabetic.  Her mum is type 1 as well.   You can't ever tell if a diabetic dies from a hypo as levels plummet immediately.   They put DIB on the certificate, 'dead in bed' which they can only put for people with diabetes.    We have a tree planted for her at the caravan place in the Cotswolds that we all meet up at every May.    Every time I hear a story like this one in the paper, its a kick up the jacksey that we can't take this diabetes thing laying down.




Your story of your friend and the news article are both tragic. It is scary to think in this day and age young people can still die of this disease (of course, as well as many other treatable diseases out there).

Its such a prevalent problem. I hope her story has an impact on those that dont do what they need to. I know its hard.


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## FM001

Very, very sad indeed.

My condolences go to this young lady's family.  God only knows the turmoil this poor girl suffered both physically and mentally with her diabetes.

Toby


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## jimmysmum

shockingly sad (im a new parent of a child with type1) but am grateful for the 2 above storys being brought to my attention, it will only make me concentrate on my sons diabetes even more, thankfully he accepts it.

xx


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## Adrienne

What is so infuriating is when DSN's or docs say no need to test overnight, they will always wake up, not true !   I know a doc who did a study on this and the majority of kids do NOT wake up.   If your child does then that is very lucky.

Another thing is that a couple of docs I've come across through friends say that if a hypo is asymptomatic ie no symptoms then it is not a hypo.  One friend queried this after a large number of us 'jumped' on this and asked the doc if her son was 1.4 mmol and no symptoms, it was  not a hypo and he was ok.   Or if her son was 1.4 mmol at night and was asleep and not woken, then he was ok.   The doc said yes thats right, no hypo.   Luckily he retired or he would have been reported big time.


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## Adrienne

jimmysmum said:


> shockingly sad (im a new parent of a child with type1) but am grateful for the 2 above storys being brought to my attention, it will only make me concentrate on my sons diabetes even more, thankfully he accepts it.
> 
> xx



Hi Jimmysmum

Hope I have not frightened you.    In clinic especially with newly diagnosed they don't talk about this.  It is rare but it does happen, what happened with my friend's daughter.   The teenager story is a different story and I have friends with teens who are struggling.  I am not looking forward the teenage years.


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## katie

Adrienne, do you know why the majority of children don't wake up, but adults do? Is it something to do with sleep being heavier or something?

Just something ive been wondering about.


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## Adrienne

Katie I have no idea.  I didn't even know that was true actually.  Do most adults wake up when hypo?   Has there been studies done on that as well?

Children sleep extremely deeply, I've just got to look at my daughter to know that.   I know I am not a heavy sleeper but that is because I am on alert all night in case Jessica alarms and I have a baby moniter beside my bed because of that.


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## katie

Adrienne said:


> Katie I have no idea.  I didn't even know that was true actually.  Do most adults wake up when hypo?   Has there been studies done on that as well?
> 
> Children sleep extremely deeply, I've just got to look at my daughter to know that.   I know I am not a heavy sleeper but that is because I am on alert all night in case Jessica alarms and I have a baby moniter beside my bed because of that.



I have no idea about any research but I wake up, including when ive been drunk the evening before and anyone ive spoken to wakes up too.  Ive only met an old lady who had problems with hypos (little hypo awareness after years of having diabetes) and a guy who kept being hospitalised because of hypos.  They were both on my DAFNE course, but haven't met anyone with that many issues since and haven't heard any adults on here saying they wake themselves in the night to test.

Might be because they sleep deeply? hmm, they really should do more research into this.

If any adults are reading this and have had problems with night hypos, let us know!


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## NiVZ

Hello,

Very sad to hear of deaths so young due to diabetes.

Re: Waking up during night time hypo's, I find I've always woken up ever since I was diagnosed at 18.

How about we do some of our own research - could one of the mod's start a poll?

Although how do you know if you hypo'd through the night if you didn't wake up?  Hmm.  

Suppose we could just see how many of us do wake up vs how many of us have never woken up hypo through the night.

So the poll could be:  Have you ever woken up because of a hypo? Yes or No.

NiVZ


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## falcon123

This is tragic. I recall a number of similar cases when there was the mass changeover to "human" insulin. However until we know the results of the post mortem there is a danger of pre-judging this case. 




> Another thing is that a couple of docs I've come across through friends say that if a hypo is asymptomatic ie no symptoms then it is not a hypo. One friend queried this after a large number of us 'jumped' on this and asked the doc if her son was 1.4 mmol and no symptoms, it was not a hypo and he was ok. Or if her son was 1.4 mmol at night and was asleep and not woken, then he was ok. The doc said yes thats right, no hypo. Luckily he retired or he would have been reported big time.




If someone does not get any symtoms by a BG of 3.0 then things need to be looked at. Sometimes they can be reinitiated by running slightly higher BGs for a while and bringing them back down gradually as over-medication may suppress them. I did though come across someone who developed Type I in his mid-twenties. He was eventually put on animal insulin as otherwise he did not get symtoms of going hypo. The medical profession are reluctant to prescribe them (animal insulins) these days however.


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## Adrienne

falcon123 said:


> If someone does not get any symtoms by a BG of 3.0 then things need to be looked at. Sometimes they can be reinitiated by running slightly higher BGs for a while and bringing them back down gradually as over-medication may suppress them. I did though come across someone who developed Type I in his mid-twenties. He was eventually put on animal insulin as otherwise he did not get symtoms of going hypo. The medical profession are reluctant to prescribe them (animal insulins) these days however.



Hiya

There are lots of children who do not get symptoms of any hypos, whatever their readings.    My daughter has been 1.4 and running around no problem.   She has been 6.4 and said she felt hypo !!   She has never had symptoms for nearly 10 years and they think it unlikely she will ever feel hypos properly now.    There are others as well.    

We have tried all the tricks, ie running high for a while but still nothing.  We are under one of the top paediatric teams in the UK.


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## katie

NiVZ said:


> Hello,
> 
> Very sad to hear of deaths so young due to diabetes.
> 
> Re: Waking up during night time hypo's, I find I've always woken up ever since I was diagnosed at 18.
> 
> How about we do some of our own research - could one of the mod's start a poll?
> 
> Although how do you know if you hypo'd through the night if you didn't wake up?  Hmm.
> 
> Suppose we could just see how many of us do wake up vs how many of us have never woken up hypo through the night.
> 
> So the poll could be:  Have you ever woken up because of a hypo? Yes or No.
> 
> NiVZ



Well I'm interested in whether people wake up or whether they (basically) slip into a coma, not whether poeple go hypo and their liver kicks out glucose.  Because if that happens, it isn't life threatening, if you know what I mean...

Basically I'm curious as to whether there are adults who dont wake up and have to test in the night just in case it happens. In fact, I'm not even sure how that would work.  I guess the question would be "have you ever been hopitalised because you didn't wake up during a night time hypo"


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## jimmysmum

Adrienne said:


> Hi Jimmysmum
> 
> Hope I have not frightened you.    In clinic especially with newly diagnosed they don't talk about this.  It is rare but it does happen, what happened with my friend's daughter.   The teenager story is a different story and I have friends with teens who are struggling.  I am not looking forward the teenage years.



Hiya,

Please done feel like you have frightnened me bcoz you havent 

I'm scared in general about diabetes because its still new but we are learning fast and tbh id rather be loaded with all the info i can possibly have, rather than be ignorant to what could happen, im sure it is rare but like you say it can/does happen and we too have been told that he will wake up, they have even said we will wake up because we are in tune with him as his parents. 

Jimmy is currently in honeymoon phase so has had all his doses lowered and we had to check through the night for a week or so because they moved his Levemir back to before bed (from the morning) and when we woke him one of the nights at 2am he was 3.4 so we had to treat a hypo. He was soundo and wasnt stirring whatsoever. When awake he generally spots his hypo's around the 3 - 3.5 mark so i guess we are lucky he can feel them.

It will be very interesting to see the thread on hypo's and waking up!

xxx


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## sofaraway

It is a very sad story. Part of me feels that something went wrong somewhere, this sort of thing shouldn't be happening. Somehow this girl was let down. but I also know that people can only change if they want to, you can offer people every help and support and unless they are ready to accept it theres not alot you can do.


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## Adrienne

jimmysmum said:


> Hiya,
> 
> Please done feel like you have frightnened me bcoz you havent
> 
> , ...........they have even said we will wake up because we are in tune with him as his parents.



Hi

I'm glad I haven't frightened you but I'll be honest and your medical team have frightened me 

The above sentence is ludicrous.  I can't believe they have told you that.  They may well have had parents saying to them something like 'I just got that feeling he/she may be hypo and I just happened to wake up'.   This of course cannot be relied on ever so I hope they didn't say that to you meaning that.   Oh dear god!!!!

It is great that your son can feel hypos, again don't take that as read though, it is all still new at the moment for you all and things can change by the day.  Hopefully this will continue as it is a great thing if he can feel them always.

Unfortunately though you have proved your team wrong already in that he didn't wake with that hypo.   This is why most of us test on a nightly basis.   Sleep deprivation is one of the worst things for all the parents but there is little that can be done and with two parents sharing the load a bit easier.

Take care of yourself though, treat yourself as well as your son to things, you need looking after as well.


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## katie

I think it usually takes more than a 3.4 to wake you up.  Ive woken up in the morning (when my alarm goes off) to that kind of number feeling a bit shaky.  I would have woken up if it had gone lower and given me worse symptoms.  Can't tell you how low I am when I wake up to a bad hypo because I go straight for the hypo treatment.


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## katie

sofaraway said:


> It is a very sad story. Part of me feels that something went wrong somewhere, this sort of thing shouldn't be happening. Somehow this girl was let down. but I also know that people can only change if they want to, you can offer people every help and support and unless they are ready to accept it theres not alot you can do.



The thing that make me thing "what the..." was that she checked herself out of hospital when she was still ill a few times.  When I was 19 there is no way my parents would let me do that.  I know she was officially an adult, but still young!


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## Adrienne

katie said:


> The thing that make me thing "what the..." was that she checked herself out of hospital when she was still ill a few times.  When I was 19 there is no way my parents would let me do that.  I know she was officially an adult, but still young!



I agree Katie but as an adult the hospital have to listen to her rather than her parents !   We don't know all the details, who knows what was going on behind the scenes.  Newspapers only print so much.


"I think it usually takes more than a 3.4 to wake you up. Ive woken up in the morning (when my alarm goes off) to that kind of number feeling a bit shaky. I would have woken up if it had gone lower and given me worse symptoms. Can't tell you how low I am when I wake up to a bad hypo because I go straight for the hypo treatment. "

I think that most kids though don't wake up whatever they are, a few do but most don't regardless of whether they are 3.4 or 2.1 or 1.9.   Jessica was 1.7 and mid seizure Feb last year when I just happened to look in her bedroom.   Glucagon injection was very handy that night !


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## katie

Adrienne said:


> I agree Katie but as an adult the hospital have to listen to her rather than her parents !   We don't know all the details, who knows what was going on behind the scenes.  Newspapers only print so much.
> 
> 
> "I think it usually takes more than a 3.4 to wake you up. Ive woken up in the morning (when my alarm goes off) to that kind of number feeling a bit shaky. I would have woken up if it had gone lower and given me worse symptoms. Can't tell you how low I am when I wake up to a bad hypo because I go straight for the hypo treatment. "
> 
> I think that most kids though don't wake up whatever they are, a few do but most don't regardless of whether they are 3.4 or 2.1 or 1.9.   Jessica was 1.7 and mid seizure Feb last year when I just happened to look in her bedroom.   Glucagon injection was very handy that night !



Yeah as I said, I know she's an adult, but i'd have done what my parents (not to mention the doc/nurses) said. Doesn't really have anything to do with it, I was just saying 

I can only talk about my own experience, I dont think i'd wake up because of a 3.4 but if it kept getting lower I would.  I'm just interested in finding out if this happens to many adults and if it doesn't, when do children start to wake up hypo.

Need to ask some children who have now grown up: sam, Jeeta etc.


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## Northerner

katie said:


> Yeah as I said, I know she's an adult, but i'd have done what my parents (not to mention the doc/nurses) said. Doesn't really have anything to do with it, I was just saying
> 
> I can only talk about my own experience, I dont think i'd wake up because of a 3.4 but if it kept getting lower I would.  I'm just interested in finding out if this happens to many adults and if it doesn't, when do children start to wake up hypo.
> 
> Need to ask some children who have now grown up: sam, Jeeta etc.



I used to wake up like you say, when it's dropping below 3.2'ish - happened a lot in the early days before I got my lantus sorted.

I think that, with the girl, it sounds like it was more a case of a mental disorder no doubt exacerbated by the swinging sugars - sounds like she was in a very destructive frame of mind and we often see what that can do to, say, people with eating disorders - they just won't be helped, no matter how hard their parents and everyone tries.


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## NiVZ

Hello,

I'm the same as Katie - when I wake up through the night due to hypo I'm always in the 1.x - 2.x range.  

I've never been above 3.0 when I wake, so going below <=2.9 seems to be the trigger for me, but again everyone is different and it probably varies depending on how good your own control has been lately.

NiVZ


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## delta

have all ways checked my son through the night around 3 or 4 o'clock
the dsn couldn't understand this and said its not needed 
i still do though


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## Adrienne

Quite right Delta.   No DSN or consultant will ever understand this unless they have children with diabetes or are extremely good experts.  Our team in London totally back this.


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## delta

good for them

the thing is this is the dsn's job when they get home and can switch off we cant  they will never understand the worry we go through everyday while putting a brave face on for our little ones


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## SilentAssassin1642

katie said:


> Yeah as I said, I know she's an adult, but i'd have done what my parents (not to mention the doc/nurses) said. Doesn't really have anything to do with it, I was just saying
> 
> I can only talk about my own experience, I dont think i'd wake up because of a 3.4 but if it kept getting lower I would.  I'm just interested in finding out if this happens to many adults and if it doesn't, when do children start to wake up hypo.
> 
> Need to ask some children who have now grown up: sam, Jeeta etc.



I don't wake up from a hypo unless its really really really bad now...the last one I woke up to was a er...1.8 when I was still in winchester because I was having really wierd dreams that i was hypo and coulnd't get out of bed


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## sofaraway

salmonpuff said:


> I was having really wierd dreams that i was hypo and coulnd't get out of bed



I've had that dream too, but I wasn't actually hypo when I managed to wake myself up.


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## Smit

This is an awful story. I was diagnosed when i was 3 and when i was a teenager really struggled and could not except a condition that i got as a young child. I really could feel this poor girls pain. More needs to be done to help people who can't cope or understand why this is or has happened to them.x


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## litto-miss-loz

salmonpuff said:


> I don't wake up from a hypo unless its really really really bad now...the last one I woke up to was a er...1.8 when I was still in winchester because I was having really wierd dreams that i was hypo and coulnd't get out of bed



I think i have woken up for every hypo during the night but then how can u tell ??? 

sometimes i think im dreaming that im goin hypo and im like half awake then i finally wake up properly and i am going hypo.... its weird...


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