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.

Tramadol I'm in cloud cuckoo land hallucinations etc.

There are other things I could take my neurologist says but I am very skeptical about anything that interfets with my brain too much.

Pregabalin has worked brilliantly on my TN, after gabapentin decided to just stop working one day!! I have much worse withdrawal from that when my doctors cock up my px than from my morphine.
The only reason I don't take morphine every day is the constipation

My mum hallucinates on tramadol, it didn't do anything at all for me though. I was a little disappointed!

Everyone different smilingmind side effects different give it a go it might work for you. And good luck my dear

Yep cure one thing and e d up with the farts

Gotta go best mate here! Xxx

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

Forgive me repeating myself, but I'm honestly not convinced. Even if this current doctor's visit comes to nothing, what's to stop the parents producing another "expert" to claim they could make all the difference, then threatening to sue if this isn't allowed?

I'd hope the judge would then say "enough - no more", but I hoped that for Charlie's sake he'd halt the palaver this time, and that certainly didn't happen

I'm afraid I also can't see the value of Connie being admitted to the medical meeting this week. I've no doubt what they're claimed to have said will be plastered all over social media afterwards, but whether she's able to take on board what they actually did say is something else again

what's to stop the parents producing another "expert" to claim they could make all the difference

I should think there must be a very small number of experts, given how specialised the field is. They must all know of each others research and must all have heard of this case, almost certainly they've all already been consulted by GOSH. If any of them had anything to offer, they would have offered it already, surely.

I took gabapentin for a while. Not helpful. Then I was given pregabalin and oh my word! The difference is great. (I have ms.) I did have fun with it when I started it though. It sent me off to fairyland for about a day and a half, then I'd get used to it, but the dose was doubled every couple of days as I had to start with a negligible dose and get it up to the right dose - a much higher one eventually (I think 300mg back then, though it's gone up a few rimes since). I'm almost at the top dose nwand wil have to lok elswhere soon.

I did enjoy the initial proces tho

Re nerve pain Morphine /codeine in tablet form was a bit disappointing.
Made one a 'stranger to the lavatory' too, and a bit 'giddy'.

But 'big gun' morphine, given in an IV patient controlled device after surgery was much more effective, but of course this is withdrawn after a couple of days.
Nerve pain is meant to be one of the hardest types to ease.I was offered gabapentin, but after surgery the pain eased, thanks to the great services of NHS.

Just catching up, so sorry for your loss WeeWitch

I forgot to say, weewitch, how sorry I am to read your sad news.

Also, my understanding of this week's timetable is as follows:

Dr Hirano arrived yesterday, and examined/will examine Charlie either yesterday or today.

The multi-disciplinary meeting (which as a PP pointed out, is what JF recommended in his April judgment) will take place either this afternoon or tomorrow morning, as Dr Hirano needs to be back in NY by the end of Tuesday (NY is 5 hours behind us and it's about a 7 hour flight).
Presumably there will then be a flurry of activity to write up the transcript of the meeting for the judge, and for him to study it.
And then on Friday there will be another hearing to discuss the outcome of the meeting and determine any further activity needed before....
The final hearing on 24/25 (or was it 25/26?) July.

Final hearing 24/25 July. The judge expects to make his decision on 25th.

I'm so sorry for your loss weewitch and for your pain sost and others (morphine makes me itch, tramadol turns my limbs into cotton wool - anyone else?).

I really truly hope that Charlie is not suffering any pain; regardless my own belief is that we would not allow a pet dog or cat to be in this situation and would rightly be prosecuted if we did. I cannot understand the notion that any life is better than no life - I can think of too many ways that any life is a far worse option.

yolofish As someone said before, death is not the worst option.

I feel similar to puzzled. I know the judge is doing his best to say yes to the parents wishes as far as he can while at the same time as steering this the right way. I applaud his efforts so far, i can't criticize and would not like to be in his shoes.

I do worry that they (parents) will push and push until he has to get heavy handed and we're back to the accusations and hysteria.

None of us out here will know what is said in that meeting to come. It will be confidential i imagine. However I would not be surprised to see CY coming out angry and telling us the doctors conspired together, it's a stitch up again, ect ect. What does happen then?

Rest assured there will be no more court cases after next week. The judge can only make a judgement on evidence put forward at the time of the court case. When he decides next week bearing in mind judgement had already been added in other courts too it will be the FINAL one and if it goes against parents I would not be surprised if he put a date for the.judgement to be carried out within 48 hours. Gosh it sounds dreadful!

This is why the judge is making sure all things are covetred so it can never comeback to court, hence Connie being allowed in meeting. She will not get her way with a judge not unless charlie isn't brain damaged. The judge will cover any eventuality.

You cannot keep appealing and Charlie's needs will always be paramount in the courts eyes. They will not let him suffer longer than need be, they will have to make him ward of court I think.

Laiste an official record is being taken of the meeting for the judge so he might make reference to the proceedings (at least in part) as part of his judgement. But no, the general public is unlikely to know in full what is discussed. Which is fine by me so long as the judge has the information he needs.

I really do hope, that if there is no (or very slim) chance of improvement for Charlie, that Connie and Chris will accept the medical opinion and decide the time has come.

I also really really hope that they will not be put off from doing that by Charlie's Army and the fear of reprisals.

I feel for their plight with all my heart but this case has become greater than the issue it was first intended to resolve owing to the fact that it/ they are being used by pro-life groups and anti establishment groups and even UKIP who are unashamedly using this poor vulnerable family to further their causes.

The irony of CA stating that GOSH/ NHS is trying to kill Charlie is appalling. Do they not realise the cost to the public purse of keeping this poor baby alive at all cost. Based on all available evidence he is not fighting he is being artificially kept alive.

It's just dreadful, the judge cannot rule that parents rights come first for a multitude of reasons. A parent in this country doesn't have the right to decide to take their child out of school on a holiday without facing a fine fgs, they are hardly going to rule that parents have the ultimate say in the healthcare of their child against the child's best interests.

It's so so sad.

Is anyone keeping an eye on the CA Facebook page in case things from today's meeting start popping up? If things don't go the way the family hope I wouldn't be surprised if we hear rumblings on there.

For some reason I can't see the CA page even though other posters say they can without joining it.

If the judge is hoping for an agreed course of action 'by all parties' by the end of this meeting, what it seems to boil down to is can the US doctor convince GOSH that this medication will help enough/ethics are good enough that they change their minds and agree it should be given.

Whether or not the judge changes his mind will likely hinge on whether GOSH change their minds as to what is best for Charlie.

MissHavishamsleftdaffodil or Connie hears from all sides that the treatment won't work and agreement happens that way instead.