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.

so just what exactly is the point of him coming at all

To end the back and forth of 'probably but of course I haven't seen for myself'? Which CA seem to latch onto. I guess a sort of 'put your money where your mouth is', so in the final hearing all the options have been explored to the (bitter) end.

@Rhodolia - thank you, so nice to have some good news of Lonelymummy and her little ballerina, have been thinking of them

@Weewitch

WeeWitch

puzzled yes, same doctor.
Justice Francis asked him if he would come in person to examine Charlie.

To end the back and forth of 'probably but of course I haven't seen for myself'? Which CA seem to latch onto

Well yes, I take your point Allington - but if that really is all there is to it then I believe this is getting even more ridiculous than I thought

It seems to me that's Charlie's best interests - already decided by four different courts after thorough deliberation - are of more importance than placating public opinion, but no doubt the CA would regard me as a heartless murderer for saying so

Whatever happened to patient confidentiality

weewitch

CA about an hour ago...

Morphine solution isn't a controlled drug I work in pharmacy morphine patches and tablets are controlled

I have tried replying but been blocked again

I am just hopping on to say hugs, love and prayers to all . I'm in work but note bad news for some (I am so sorry) and good news for others (I am so happy) and everyone else is hanging in (so that's good) - I hope I didn't contradict myself there but basically and clumsily trying to say you are all in my thoughts and prayers

I think patient confidentiality is a moot point given how much the family have posted.

As an ex NICU nurse I reckon I could walk in and care for this baby with very little extra info. The family have ensured that

Alfieisnoisy, see thats the trouble, the family have put almost everything out there for everyone to see, they want everyones support, which i do not blame them for, but as for a lot of things,not everyone agrees.

Oramorph isn't controlled, is it?

Yay ballerina! Please pass on our love we are thinking of her.

Condolences weewitch

if that really is all there is to it then I believe this is getting even more ridiculous than I thought

It does seem to be a bit of a farce - I hope I'm wrong - with one GOSH and CA going 'oh yes he is' and 'oh no it doesn't' while this USA Dr avoids committing himself too far one way or the other.

I'm not a scientist, but from what a lay person can understand about medical trials/ new drugs it seems difficult to see how data collected over just a few months on a small sample can change the prognosis so much.

But no doubt we will hear next week, with the final hearing.

patient confidentiality went out the window whn c and c went to the press

with one GOSH and CA going 'oh yes he is' and 'oh no it doesn't'

But who would you rather believe? The highly-trained doctors who've been caring for him for months and know his medical records inside out? Or the neanderthal CA posters, who can't even string a lucid sentence together and who have never met Charlie or know anything about his condition other than what they have misinterpreted from the highly-biased CA site?

I don't think the judge is remotely bothered about public opinion. The 'new' evidence is, I think because when the doctor was questioned before, he was in the middle of trialling nucleoside treatment and so results weren't in. Now the trial has finished and he has final results.

If the drug can cross the blood brain barrier, then it could make a difference to CG, but only if his brain damage is less than GOSH say it is. If it as bad as GOSH say, then it's pointless. That's why he's been asked to come and see CG himself and discuss the case with GOSH doctors.

It's also why the judge was asking for head measurements. If CG's head hasn't grown it is almost certainly (or certainly?) because his brain hasn't grown. GOSH can't tell because the only way to measure brain growth accurately is to scan it and CY have refused thus far to allow them to. I may have read yesterday that have now allowed it.

Coudl people help me here? That 56% which I've always interpreted as the possibility that the stuff will cross the bbb -- is that right, or is it that 56% of a dose crosses the bbb?

From what I recall he quoted 11-56% chance of crossing bbb. Whether or not it would do anything would depend on the brain damage but also the fact that it might not in Charlie's case anyway.
I think he said without significant brain damage there would be 10% chance of some improvement. Unquantified but probable.

This farce is being played out so the judge tbf to the parents has covered every single avenue so this case can never be brought back to court ever again. That is also the reason Connie is allowed in clinicians meeting so she cannot say anyone is colluding and that everything is transparent and above board. The judge is being really thorough. Also the judge hopes Connie will make the right decision after she sees the evidence presented.

just on the news dr has arrived- unfortunatly theyre quoting 56% chance of pmprovmnt again-riiculous

It was 50% chance of crossing BBB.

The 56% is the absolute maximum chance of increase in muscle activity (minimum % was 10 iirc?)

It's a 50% chance that the drug will cross the bbb - if it does, then there's an 11-56% chance of clinically meaningful muscle improvement for children with the other form of disease, so hoped for for Charlie. The 56% keeps getting quoted in the press as if it's the expected percentage, instead of the absolute maximum possible improvement. A lot of distance between 11% and 56%.

Jux - in his testimony / cross examination last week, the NY doctor said the treatment had somewhere between 10% and 56% chance of crossing BBB. And that chances of improvement are around 10% (based on one of nine patients without the same type of mito disorder as CG receiving the treatment responding). No clear indication what constituted "improvement" but possibly being taken off vent and nothing else.

lol mass x post, sorry

Thank you.