Charlie Gard Case 3

[LovelyBath77]

A new thread to carry on from the previous ones about the case

@MargaretTwatyer sorry that you seem so upset. I think these threads have been a good place for necessary, robust discussions to take place. If differing perspectives are to be included (and they must) then of course the Gard's behaviour should be included in the discussion and analysed for its impact on proceedings.

Oh, although I have left out all the randomers making diagnoses of liver/kidney failure/oedema from looking at photographs

The random era being highly trained doctors and nurses on here...

Good to see that the pistonhead forum are agreeing with us too on this.

Bloody hell they're mild compared to the filth being spewed on the other page! There has to he some balance, Great Ormond Street are being absolutely slaughtered in some quarters with people calling for the death of the doctors and the judge.

Yes, I thought I must have missed some similar abuse, but no...

CA is full of unintelligent idiots, they are saying he looks like a big strapping lad when it's obvious he has odema because he is so desperately unwell. His parents need to step back and put Charlie's needs first not their grief.

I can't read all of Margaret's epic post, it's sending me cross eyed. Is it all just quotes from other posts she objects to?

@HollyhocksAndAPompadour I don't know how to make a link just one word, so you're ahead of me!

Here's another post from this v knowledgable piston heads guy:

ModernAndy said:
A question for Wiccy and I hope this doesn't sound disrespectful; In the pictures Charlie looks like quite a chunky baby with more than a good bit of weight on him. Is this a part of the condition? i.e. there's no muscle so everything gets converted to fat?
It doesn't look like fat to me but without prodding and poking I couldn't confirm this, but it's more likely a fluid build up within the tissues, particularly muscle tissue. I haven't seen any recent pictures until just now, the puffiness around the eyes suggests it's oedema.

Wiccy said:

Oedema, or fluid build up within tissues, is always a bad sign. Simple things like infection, insect bites etc causes it, but knowing Charlies condition it's a clear indication either protein is being released (liver failure) or more likely gradual failure of ion channels due to low levels of ATP (ATP is adenosine triphosphate, the last phosphate group has the energy to make things happen so breaks up to adenosine diphosphate, a phosphate group and some energy to make something happen). It's complicated to explain all the hows and whys and lunch break is over so will pop in tonight to answer more questions when I get home.

Fluid will start building up in his lungs now, and if this is the case, normal diuretics won't work due to the kidney failure and even with intervention I suspect the next 2 weeks will be his last.

He's 11 months old, and resembles a 3 month old. They're back in the high court today looking for more snake oil.

Yes Serf. Must have taken a while.

Yes, she has posted negatively on all the GOSH threads, including the one for donations. Which is fine, her right to do, but she swept in and out without engaging which made her look like a GF.

This is her engaging now but I am still not sure what her argument is though, other than to say that everyone is mean.

To be fair, Rabbit, I think most of the doctors and nurses have stressed that we can't diagnose from the pictures. I know I have.

I also don't care for the criticism of the parents. I think they absolutely believe they are doing the right thing for Charlie but they are so crazed with grief, fatigue and worry that they cannot make good choices. Which is why it is right that our system puts the child at the centre and decisions are made in the child's best interests with the courts intervening if the medics and parents cannot agree.

But all the huns, hangers-on, 'publicists' and holy-rollers manipulating and feeding the frenzy for their own ends? I have nothing but contempt
for them.

Ah, sorry! My crap cut and paste skills. I've kicked it up. Wiccys answer is this:

It doesn't look like fat to me but without prodding and poking I couldn't confirm this, but it's more likely a fluid build up within the tissues, particularly muscle tissue. I haven't seen any recent pictures until just now, the puffiness around the eyes suggests it's oedema.

Oedema, or fluid build up within tissues, is always a bad sign. Simple things like infection, insect bites etc causes it, but knowing Charlies condition it's a clear indication either protein is being released (liver failure) or more likely gradual failure of ion channels due to low levels of ATP (ATP is adenosine triphosphate, the last phosphate group has the energy to make things happen so breaks up to adenosine diphosphate, a phosphate group and some energy to make something happen). It's complicated to explain all the hows and whys and lunch break is over so will pop in tonight to answer more questions when I get home.

Fluid will start building up in his lungs now, and if this is the case, normal diuretics won't work due to the kidney failure and even with intervention I suspect the next 2 weeks will be his last.

He's 11 months old, and resembles a 3 month old. They're back in the high court today looking for more snake oil.

Yes Serf. Must have taken a while.

Yes it must.

@MargaretTwatyer do you have a personal connection or insight?

Fair enough, I disagree that they are beyond critism though

I can still empathise and wish them all the support and care that they can get but I can't put them on a pedestal and not look at what they are doing.

I have seen tonight, Laura Gard re tweeting the nasty posts about GOSH, I have seen Connie and Chris whipping up hatred through their own posts earlier this week and I feel that it's very wrong.

I was here on the Dax threads if anyone remembers those before they all got deleted and got exactly the same responses that Margaret gave.

Premature baby etc, mustin't question the parents.

I also got slaughtered on Camilla Batmanghelidjh when I raised concerns about her years ago.

As long as it's not personal abuse (and I really haven't seen that), I believe that their actions should be looked at (and curtailed).

There is a much bigger picture here, more posts tonight calling for benefactors to stop donations, calling staff murderers.

They could stop this.

Ah, come on, Margaret's entitled to her opinion.

Peace and love, eh?

Good night all.

PS I don't think the Pistonheads bloke is a doctor - he knows his biosciences and explains it well but most clinicians would not be quite so... definite based on photos. I doubt he has much/any experience of patient care.

I don't think Margaret has a personal connection (she said she hasn't), I think she has a point. The majority of this discussion has been measured and insightful but a few comments have been pretty distasteful.

Just because no comments have been anywhere near as vile as that on the CA page doesn't make it okay. Margaret was also called a GF for disagreeing.

Crossed posts Rabbit! My last was not to you

I do think that she was a GF on the other two threads because of the implications she made about GOSH without any explanation.

Very happy to leave it though and go to bed

PS I don't think the Pistonheads bloke is a doctor - he knows his biosciences and explains it well but most clinicians would not be quite so... definite based on photos. I doubt he has much/any experience of patient care

I thought that, very interesting though

Ah sorry, I must have missed that.

It just seems as though maybe someone is quite upset to C&P that sheer volume of stuff from more than one long thread.

I hope it isn't someone involved/triggered and upset.

With you all the way about Camila B though, Rabbit. Said so from the start

And now it really is good night from me.

Well yes, who knows who the piston heads guy is! I feel he might be a student, perhaps.

The pistonheads posts are just word salad. They make grammatical sense but are medically completely meaningless. He is quite wrong about oedema being "a sign of protein being released in liver failure" (the hypoalbuminuria in liver failure is due to impaired synthetic function rather than increased protein loss, however most oedema in liver failure is due to salt retention) and also wrong about diuretics and renal failure (you might need to use higher doses, but diuretics still work right up until the kidneys pack up completely). The ATP section I just have no idea what's he is trying to say at all.

Honestly the guy sounds like he's just read a few Wikipedia articles. I don't think he has any specific medical background - he's getting quite basic undergrad stuff wrong. This case has had quite enough randoms claiming to be metabolic medicine experts already, let's not encourage any more.