Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

Back of envelope calculation for me has it at 0.55%
That could be wrong though, maths is not my strong point

So no updates anyone?

WeeWitch I'm very sorry to hear what you and your family are going through. Don't apologise. I haven't been on these threads very much but it's hard not to think of other losses. Between 5000 and 6000 children die every year in the UK, for example, and I've lost a child myself, and the flames of this whole, not-actually-that-unique (to start with) case have been very much fanned by the media.

On the basis of being tested on only 20 people with a different co edition I'd say the odds were -100%

10 people

On the basis of being tested on only 10 people with a different condition than Charlie's I put the chances of success at -1000%

Finally passed typing test!

Fair enough, Beyond. I got 550 and then divided it into 100. I'm not sure that last step was necessary .... [oh dear]

But whoever of us is right, it is less than 1%.

Oramorph isn't controlled, is it?

Not in the same way as other morphine preparations. It would be locked away but not signed in and out.

Oxynorm (the other oral preparation containing morphine) is measured and checked and if the volume doesn't match the signatures there's problems and it's all looked into. It takes two nurses to measure and sign it out and 2 nurses again to check it at the bedside

Oramorph needs to be securely stored, but can be given by a single nurse, the volume isn't checked every 24 hours to make sure it matches doses given etc.

Leghoul I'm sorry for your loss. My little brother died unexpectedly 2009 and the pain hits me every day. I cen't begin to imagine what it must be like for those of you who've lost a child. So much wors

(ETA oxynorm doesn't exactly contain morphine, but is a liquid med quite similar to morphine, just used it as an example of a fully controlled drug Vs oramorph)

Just caught up, so sorry to hear WeeWitch

Sos do you find the Oramorph helpful? I hope so, sorry to hear you're in so much pain, I also read your other post about the spasms. Sounds nasty. Kind thoughts.

Oxycontin is meant to be good

Sadly the hospital had a reputation at the time for being proud of their heroic saves and going further for those saves than other hospitals found ethical.

This is a really good point and raises the question of just because medicine can save a life, should it?

I've sat in discussions where we've had to discuss DNRs with parents or make decisions not to ventilate should a child go into respiratory arrest and it's absolutely heartbreaking but these talks aren't had unless as professionals we genuinely, genuinely think it is the kindest thing for the child. As a previous poster has said, GOSH go to such extremes to help children and give them some quality of life that I can't imagine they would even consider withdrawing treatment unless they really felt there was no positive outcome.

It is a very good point, around aggressive treatment as well and when 'saving' is the right thing to do.

Oramorph helped my pain, I functioned normally on it (out to shops, cooking, cleaning), however the withdrawl was horrible/difficult even after a few days. I think I am extra sensitive/prone to opiates because I don't think that's usual.

The BBC news app has a good summary of the case, without misquoting facts or statistics. Here's to more balanced & factually-correct reporting.

It's true that in some ways, sometimes we treat our pets better than we treat our children. We know that a cat or dog would be kindly put to sleep. So I wonder whether that is the right thing to do, now (looking at my old - but hale and hearty for the moment - lovely cat).

Hi lovelybath77 yes it helps in a way, I use the oramorph as a top up if the pain gets too bad. The trouble is the distonia pain isn't relieved by MST or oramorph much. Pregabaline or gabapentine are more suitable as they are nerve painkillers . morphine just dopes me up and works on cancer pain which is surprisingly not as painful as the distonia. You all know what it us to wake up in middle of the night with cramp in your calves. Or if you are running etc and get cramp. Well that is the level of pain I have 24/7 .it is worse at night, as soon as I try to relax then the muscles cramp even more and are so powerful it produces massive spasms. But you get to live with a degree of pain, you get used to it and your pain thresholds vary from person to person. Only botox gives me complete relief but then you have floppy legs that collapse underneath you. But despite all that there are far more people worse off then me and I never feel sorry for myself when I think of others. So my adage a smile a day keeps the men in white coats away lol!

Throughout this time, I have been reminded of the fairy tale 'The Princess and the Nightingale'.

Sorry derailing thread but interested you find pregablin helpful sostenueto as I've heard mixed things about it. It has been suggested I try it but seeing a pain specialist first.

I do refuse a lot if meds as I don't want to be a zombie. Quality of life us more important to me than quantity and now enough of my troubles or you'll all end up being bored to death!

Not good on the tummy smilingmind can make you sick. Gabapentine really made me sick.