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Original poster

Charlie Gard 10

999 replies

user1498911470 · 15/07/2017 23:26

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.

OP posts:
Thread gallery
9
GabsAlot · 17/07/2017 13:46

ive tweetd itv as its getting ridiculous now

Sostenueto · 17/07/2017 13:47

If, in the end, there is no hope for little charlie will the judge make him ward of court so the verdict can be carried out? Cos I can't see c&c sitting there quietly and let it happen.

BeyondDrinksAndKnowsThings · 17/07/2017 13:51

Summarised...

Charlie has encephalomyopathic MDS

Dr mario tested this med on 11 patients with myopathic MDS
Test showed 10% chance of breathing without vent
11-56% chance of improved muscle function
50% chance of crossing bbb

BeyondDrinksAndKnowsThings · 17/07/2017 13:52

Sorry, yes, mass x post!!

Sostenueto · 17/07/2017 13:52

I have to sign for my oramorph and it has to be locked up at home. If I have to go for appointment to hospital and they ask to bring my meds then it has to be locked up along with my MST in the hospital and signed in and out by a nurse. So yes I suppose its a controlled drug.

MontyPythonsFlyingFuck · 17/07/2017 13:54

I think, and hope, that the judge will bend over backwards to avoid making Charlie a ward of court. But if, in the end, his parents will not accept the court's decision or the medical evidence, I don't see what else he can do.

It's absolutely terrible to find yourself hoping that someone (Connie) understands finally just how hopeless the situation is, when you're referring to her only child, but I really do hope that her attendance at the meeting makes the scales fall from her eyes.

Sostenueto · 17/07/2017 13:55

Agreed Monty.

AcrossthePond55 · 17/07/2017 13:55

One of the 'visuals' that keeps crossing my mind is not Charlie as he is now, a wee little child, but Charlie in the same condition as a 5' 8", 160 lb (or whatever) teen or young adult. I realize that he probably won't live that long no matter what, but it's one thing to care for someone small enough to move easily. Not so easy to care for an adult. Total bed-care for an adult is an arduous and difficult task. Bedsores, limbs that become contorted, and the dead weight of someone who has little or no ability to respond.

I don't think C & C and CA are actually seeing the true picture of what may lie ahead even if this medicine does 'work'. The doctor himself is saying that any improvement will be relatively minor, isn't he? It's not like he's saying he will be 'cured'.

Writerwannabe83 · 17/07/2017 13:57

So even if the drug can cross the BBB and it does have an effect of somewhere between 11-56% the best outcome is still going to be that he has some brain damage, he's still going to be blind, he's still going to be deaf, he's still going to be predominantly paralysed but he may be able to breathe on his own?

Or do they think they can massively turn his situation around?

Nquartz · 17/07/2017 14:01

Just caught up, and wanted to say so sorry for your loss Witch Flowers

And so pleased to hear the ballerina is back on her feet.

AcrossthePond good point, I do wonder if C & C are just blinding hoping for a miracle cure and not actually letting themselves think realistic of what this medicine "working" actually means

muckypup73 · 17/07/2017 14:01

Writerwannabe83, I think thats about the sum of it, I would wonder as well if charlies still having seisures that would be causing more brain damage.

BeyondDrinksAndKnowsThings · 17/07/2017 14:03

And you gotta bear in mind that each of those % is cumulative

So the minimum chance of it working isn't 10%, it's 10x11x50
(Brain not at full capacity or I'd work it out for you!)

muckypup73 · 17/07/2017 14:03

Nquartz, thats the trouble thats what connie and chris will be seeing, all those posts with he will be riding a biike soon or he will be a normal child can you imagine being them and reading that??? filling you with false hope? and hearing about all sorts of accusations against gosh and actually beliveing them because you want to cling onto anything?

Sostenueto · 17/07/2017 14:05

At the moment when Charlie has a fit there is no outward signs as far as someone said a few threads back because he's effectively paralysed. Well if they give him meds which have to be given lifelong and they work a little bit you may then see outward sign of when Charlie fits which can be quite frightening and I believe again only from hearsay on previous threads the babe fits a lot. This is only hearsay really but that would not be pleasant for the parents to see.

Nquartz · 17/07/2017 14:13

Mucky it must be so horrendous for them being filled with such false hope. I think we've all said it at some point, but there just doesn't seem to be anyone in the family with a clear head who can actually help C & C see the truth, it's all this BS which doesn't help them at all

frankie001 · 17/07/2017 14:17

Re oramorph, it depends on the settings and local policy. Some areas class it as a cd, whereas others don't. I would imagine in a NICU setting it would be a cd.

I've been following these threads and I just hope that whatever decision that is made, firmly has Charlie's interest followed 100% and is not swayed by pressure. I think the judge will make the right decision.

MissHavishamsleftdaffodil · 17/07/2017 14:18

In three decades I've worked with many deaf, blind, immobile, severely brain damaged children and adults, peg fed, severe epilepsy syndromes, many on oxygen and trachys, many severely life limited, and out of those hundreds of people, with all but one I'd argue passionately that they had meaningful quality of life and were helped to enjoy it as much as possible. They had preferences and likes, things they enjoyed, were loved very much by their families and by all the medical and educational and social care staff who cared for them. Almost all of them were under GOSH who were very positive and proactive in their care and finding every crumb of additional treatment that helped them.

From that experience I keep coming back to that if GOSH don't feel Charlie has a quality of life then it has to be a really bloody awful state they believe he is in. They go multiple extra miles every day for children at the extreme end of disability and are so great with these children.

Jux · 17/07/2017 14:19

Beyond, does that co to about 0.18% ?

MissHavishamsleftdaffodil · 17/07/2017 14:27

The only one of those people I never felt ok about or for was an A&E 'heroic measures' save of a person finally resuscitated after a long, long time following a terrible accident. It was a victory for the A&E staff, but that person was left wholly paralysed and terribly brain damaged, unable to communicate, and tears often rolled down their face through the day. They were the most lovely person and that shone through clearly despite how little they could interact, we adored them and did everything we possibly could think of to ease life for them, but I don't think the family felt that A&E had made the right call. When the person died a couple of years later we missed them very much but it was a release.

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.

Bloodyhellfire · 17/07/2017 14:27

MissHavishamsleftdaffodil

I think you made an excellent point there

TesticlesInTheBlender · 17/07/2017 14:30

Legally Oramorph Solution 10mg/5ml is a CD schedule 4 - so a CD, but not strictly controlled - not signed in or out of the pharmacy and no safe custody requirements (locked cupboard). Oramorph Concentrate 10mg/ml is a CD schedule 2 (There is no such thing as a morphine patch) - this has to be signed in and out of a pharmacy and has to be stored securely, much tighter controls than a schedule 4.

Sostenueto · 17/07/2017 14:30

Misshaversham what we have learned is that Charlie has most of those afflictions together and I agree GOSH know how bad he is having so much experience and yes believe he must be really bad.

oakleaffy · 17/07/2017 14:31

Weewitch, So sorry about the terrible news your family have just had.
Suicide is one of the hardest things for families to come to terms with, and I understand your justifiable anger with the media circus.

leghoul · 17/07/2017 14:32

Did Trump contact the US medical team? How much funding to the hospital or research dept is CG worth now if they take the case?

BlondieJ · 17/07/2017 14:33

@MissHavishamsleftdaffodil really sensitively and well written post Biscuit