dreadful

[bev]

Hi all,

Last night at 11pm Alex was high after eating some cake for dads birthday. He was 15 - so gave correction. Went up 1 hour later and he was still 15! So checked his pump which had suspended all insulin - for an hour - as his level had dropped suddenly to 2.9 - 15 minutes after the correction dose when i was downstairs waiting to see if correction had worked. I was mildy annoyed with myself - but also frustrated that the pump had suspended for an hour as i usually treat hypo and turn insulin back on.
However, the following story was posted on the childrens forum i am on and it puts everything into perspective for me. I am just so glad that the pump suspended insulin as i would not have expected a hypo 15 minutes after a correction dose.
The following story is heartbreaking.Bev





I need to tell you some bad news.

Trent was so excited to get to the conference this year to see all his friends, friends who understood his daily life as a diabetic. He especially wanted to see Jackie from Indiana, who he met last year.

Thursday morning when I went to his room to wake him for school, he had passed away in the night. Knowing he was gone I, as a ER nurse knew the outcome, but had to try for my other children.....

Obviously we have to wait for an autopsy but I'm sure his blood sugar dropped too low.

It is difficult to write this and our family is an emotional wreck. His twin sister Tara is torn up and his older brother just falls apart every few minutes.

Our life will never be the same.

My older son vows to find a cure and wants to know where to send any money that he fundraises. Maybe you can help him with that and let us know which organization he should focus on.

Dr Fran Kaufman is perplexed and also very distraught over this loss, as well as all the doctors at Childrens hospital LA.

Please pass the message along for our family.

There has been a memorial fund started for Trent. My friend Janell Wilson (805)674-2905 is handling all this stuff for us.

Also our phone (805)471-6420. We need all the help we can get. Our life is crumbling.

Bob and Jennifer Nicholson

(Trent 14 dx 2/2000, Tara 14 (Trents twin), and our oldest Tyler 14)

 

[sasha1]

Tragic ...

Heidi
xx🙂

 

[Peter C]

Dead-in-Bed Syndrome

Tragic ...

Heidi
xx🙂

Hi there,
the most recent discussion of Dead-in-Bed Syndrome is here....
most reports have always said the autopsies are negative so hypoglcemia is assumed as the cause. Newer research suggests that there also has to be an abnormal( perhaps undetected) heart rhythm as well and very possibly
caused by the diabetes e.g. cardiac autonomous neuropathy. So there is a suggestion early detection of these cardiac problems might help. Others have tried to pin the syndrome on the modern gm insulins but it seems it has always been going on .....

http://www.diabetesmonitor.com/learning-center/other-complications/dead-in-bed-syndrome.htm

 

[am64]

certainly puts things in perspective Bev xxx so sad

 

[sasha1]

Hi there,
the most recent discussion of Dead-in-Bed Syndrome is here....
most reports have always said the autopsies are negative so hypoglcemia is assumed as the cause. Newer research suggests that there also has to be an abnormal( perhaps undetected) heart rhythm as well and very possibly
caused by the diabetes e.g. cardiac autonomous neuropathy. So there is a suggestion early detection of these cardiac problems might help. Others have tried to pin the syndrome on the modern gm insulins but it seems it has always been going on .....

http://www.diabetesmonitor.com/learning-center/other-complications/dead-in-bed-syndrome.htm

Hi Peter ...

I think we have to be very careful of assumptions .. especially when there is an underlying medical condition, ie, diabetes .. and it may be easier for some of the profession to cast a negative aspect of diabetes like hypoglycemia as the cause .. More research needs to done in to the cardiac autonomous neuropathy element. As you state GM insulins have been the target of such tragic deaths .. But my friend who is also type1 diabetic and has been since she was a baby .. before the discovery of GM insulins ... clearly recalls a conversation between her parents and consultant discussing the dead in bed syndrome .. and as a small child it terrified her .. she lives by the practice of always eating before bed ..

Another possiblity regarding heart problems and there undetection ... it could also be Sudden Adult Death Syndrome ... where no health condition is apparent or diagnosed .. Another family friend lost her son to this condition 7 years ago aged 22

Heidi
xx🙂

 

[Sugarbum]

Hi Bev, sad to hear. Also I agree what with what you say heidi, all impossible to imagine and so sad.

Bev, so alex's BM went from 15 to 2.9 in 15 mins? Thats bad. Lucky you checked him.

x

 

[bev]

Hi Bev, sad to hear. Also I agree what with what you say heidi, all impossible to imagine and so sad.

Bev, so alex's BM went from 15 to 2.9 in 15 mins? Thats bad. Lucky you checked him.

x

Lou, after speaking with all the wonderful mums on the other forum - we think what may have happened is that the sensor took a wobbly and told the pump he was 2.9 - but actually he was probably more like the 15. The insulin wouldnt have worked in 15 minutes so its the only theory we can come up with - then the fact that the pump went into suspend mode made matters worse! Still, its a lesson learnt as they say. I cant stop thinking about that poor boy and his family. Alex has had even more attention today (if thats possible!).🙂Bev

 

[Sugarbum]

Yes that makes more sense hey? It blew my socks off to think that might have happened so fast! I was sat here thinking your sensor cant be right, calibration etc, but I know you think of those things all the time....

Its such an awful name 'dead in bed' syndrome. Is that really what its called? Never heard of that....

 

[sasha1]

Yes that makes more sense hey? It blew my socks off to think that might have happened so fast! I was sat here thinking your sensor cant be right, calibration etc, but I know you think of those things all the time....

Its such an awful name 'dead in bed' syndrome. Is that really what its called? Never heard of that....

Hi Hun ...

I must agree with you on this ... it is an awful name ... and one that is only put on a diabetics death certificate ....

If you follow the link that PeterC ..put up ..it will explain more about it ..

Heidi
xx🙂

 

[Sugarbum]

Heidi, it is awful isnt it?

I didnt know any of that. You have obviously learned or read some stuff about it. I should do to really, just to know what is it.

Does anyone know if the little one mentioned was a pumper? I would imagine so if he was american?

 

[bev]

Yes that makes more sense hey? It blew my socks off to think that might have happened so fast! I was sat here thinking your sensor cant be right, calibration etc, but I know you think of those things all the time....

Its such an awful name 'dead in bed' syndrome. Is that really what its called? Never heard of that....

Lou, for some reason it didnt even enter my head that it could be the sensor out -i just assumed that it was a true reflection of his levels. I do feel very thick to be honest as it should have been the first thing i thought of.😱

DIB is the most horrendous name ever isnt it? I was told about this 2 months after diagnosis when some people on the other list were talking about a girl aged 12 who had died the year before and i stupidly asked how she had died..
I dont blame them for telling me - but it was the worst shock ever and when i went to the DUK weekend it was the first question i asked the consultant - much to the horror of all the other parents.

I have just learnt that there have been 3 deaths of children in the last 2 weeks from the same thing. Although it should be said that this is a huge forum and includes America - so although it seems like a lot - in comparison its still not huge numbers - but dreadfully dreadfully sad and unnerving...one child died from DKA age 13. Bev

 

[Becca]

It's just horrendous and heartbreaking. My heart goes out to the family. It brings back so many memories of the lovely girl that Bev mentioned previously, who Adrienne and i met a week or so before she passed away. Feel so numb now.

 

[bev]

It's just horrendous and heartbreaking. My heart goes out to the family. It brings back so many memories of the lovely girl that Bev mentioned previously, who Adrienne and i met a week or so before she passed away. Feel so numb now.

Becca, you know the 13 year old who died from DKA - was he only high for a few hours? I thought you had to have DKA for over 24 hours for it to cause death? I am horrified at this thought now.😱Bev

 

[Sugarbum]

Goodness me, this really is awful. I feel very ignorant about this one, I have heard of child deaths like this but perhaps not referred to as such.

These things really are the reason we need a cure and need to back the research.

Sigh.

 

[Adrienne]

Yep RIP Danielle and now Trent. This just throws you into orbit. I have to shut my mind as I don't know how else to deal with it.

I want to send these heartbreaking stories to all those c**p DSN's and consultants out there who tell the newly diagnosed kids' families not to bother testing at night as they will wake up. Yeh right take a rain check on that one.

Sorry I'm angry. I'm angry this has happened and I'm angry with the bozzo's who are in these jobs who obviously don't know their stuff and pretend to look after people. I think I may send it to the two hospitals here !

 

[sasha1]

I was told about the DIB, the day Nathan was released from hospital ... as if at that time we didnt have enough to digest and take in .. fortunately it was'nt said in front of Nathan .. and to this day right or wrong I have not said anything ... he has enough to contend with .. when the time is fight he will be told .. accepted he has the right to know ..

To be quite honest it worries me no end ... I even check on Nathan several times a night just to put my mind at rest .. another thing is again this is only my choice .. he always goes to bed with supper .. regardless of his BG reading.

More research is definately needed into this syndrome ... also other avenues need to be explored, ie hidden medical condition etc ..

Heidi
xx🙂

 

[Becca]

Becca, you know the 13 year old who died from DKA - was he only high for a few hours? I thought you had to have DKA for over 24 hours for it to cause death? I am horrified at this thought now.😱Bev

Hi Bev, no i was talking about the girl called "D" who we met at Hoburne the first year.

I would think that the 13yr old in the US would have had to have been high for a little while. Suppose it depends if he was on a pump or not? DKA i would have thought would be quicker on a pump because of no long acting insulin but depends on how quickly as an individual he could get ketones etc...

x

 

[Becca]

Yep RIP Danielle and now Trent. This just throws you into orbit. I have to shut my mind as I don't know how else to deal with it.

I want to send these heartbreaking stories to all those c**p DSN's and consultants out there who tell the newly diagnosed kids' families not to bother testing at night as they will wake up. Yeh right take a rain check on that one.

Sorry I'm angry. I'm angry this has happened and I'm angry with the bozzo's who are in these jobs who obviously don't know their stuff and pretend to look after people. I think I may send it to the two hospitals here !

Hey Adrienne, hugs to you, think we should send it to DUK as well seen as they recently published that a child would wake up if hypo or recover from it - can't remember the exact wording. Stupid idiots!

 

[sasha1]

Becca, you know the 13 year old who died from DKA - was he only high for a few hours? I thought you had to have DKA for over 24 hours for it to cause death? I am horrified at this thought now.😱Bev

DKA .. can deteriorate at an alarming rate ... 😱

Heidi
xx🙂

 

[Adrienne]

Hey Adrienne, hugs to you, think we should send it to DUK as well seen as they recently published that a child would wake up if hypo or recover from it - can't remember the exact wording. Stupid idiots!

Yes I agree, I think we will need to ask Laura to see if we can do this?