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.

Distonia, yes the amitryptilline can be relaxing, also magnesium can be relaxing too.

Right guys I off see you in a bit x

Can I add that there will be no diminution of children's rights in the courts. They will still have guardians where appropriate and don't forget that in most critical situations, parents and doctors agree. Few cases like this get to court. The Children's Act also gives children rights.

They've posted hoping GOSH won't sedate him on purpose to make him look unresponsive

Thanks @ArgyMargy just sent a message via Facebook.

I don't understand what the family and Catherine Glenn Thing think they will achieve by making a fuss about the lawyer. She is only following the guardian's instructions in upholding the original order. If the guardian sacks her and appoints someone else, the new barrister will only have to follow precisely the same instructions - and for all they know, will do so even more effectively that Victoria Butler-Cole.

I think Noeuf raises a very valid point.

According to the timeline detailed in one of the Court documents it does read as though it was CY who took this therapy to the doctors following her online conversations with another parent in the States. And then by the time it was evaluated and the ethics process started, CG had deteriorated.

The obvious question is why didn't the doctors know this? Why did they not start the process? I find it difficult to believe that the doctors would not be aware of such a therapy (please correct me!) but if this is at the crux of it and this is where it started to go wrong, I can see how the parents have ended up where they were.

If only ...... the doctors had started that process earlier .... and so on.

Thanks @DarthMaiden just sent an email to that too

I take baclafen (ms treatment,) for spasms, the Parkinson's meds were best but got kidney failure with them. It has deformed my feet ankles on floor when I walk so constant dislocations but best treatment which lasts about a couple of weeks is botox which paralyses muscles and allows me to get on my diving boots hospital made for me. I have the youngest looking feet and legs ever lol!

Noeuf but the US doctor they are pinning their how's on wouldn't /couldn't come earlier so they wouldn't have got the treatment earlier. Wasn't he invited in January?

That post meant for lovelybath77

Sorry, pinning their hopes on.

I don't think that the Drs ever thought that it would be successful though and they were only applying for the initial stages of assessment I thought? Then he had the seizures.

It's not possible for the NHS to sustain every medical team researching treatments for every child that haven't even gone through the five year testing and ethics assessment.

It's more blame on the Drs though which their shoulders are expected to take.

Thanks deuce that's my point really - regardless of how correctly the decisions were made at the time, I think it's this 'delay' that will be the hardest part to move past. So now although it's too late probably, how sad to try to come to terms with that.

Bad pain day here too sos, I feel for you

I did just watch GoT though, so there is one advantage to being in bed all day

I'm not blaming the doctors but if this was a potential treatment that was not mooted by the doctors, for valid reasons, then I can see how the parents may feel let down.

Gosh been using nucleasides on other mico babies for ages and were aware of treatment they were then going to start it when charlie had the bad bout of fits in which case they couldn't start it and are not prophets who could foretell he would fit and fit so long to cause the irreversible catastrophic brain damage. Their priority was to try and stabalise Charlie instead of pumping him full of a drug with minimum outcome. Gosh have treated over 1000 mico children, they know what they are doing.

5 years ago today, my nephew aged just 5 months had a 16+ heart bypass surgery that sliced, diced and broke bones with the aim of mending his heart. It hasn't been plain sailing, he has had bumps along the road and he has global development delay, autism, hyper-mobility and is currently going through genetic testing, but he starts school this summer. For that, I absolutely love the NHS and children's specialists and all the nursing staff who made it possible for us to still have this funny, happy and amazing wee boy in our life.

Deux the doctors made a decision that Charlie was not for longterm ventilation before he deteriorated. It seems that right from the start they had decided there was no hope. I can understand how frustrating that must have been for his parents. This is such a rare condition that even the experts don't have a lot of experience in it.

Also, I have sent @lonelymummyof1 a message to say that some of you were asking after her. I saw a video of her DD dancing on the ward yesterday, so I think she is feeling a lot better!

Beyondthings(passes pregabaline and morphine to help and a big hug). Going round dds to see it as I don't have sky. GOT I mean. Prayers to youxx

Sostenueto I don't think they were going to start the treatment were they?

Didn't they invite the American professor over in January and he declined.

I think that at the same time Charlie had the fits.

I imagine that part of inviting the professor over was in part to let the parents know that every option was being explored.

I might well have got that wrong though.

Crikey, I know all this. Stop.

All I'm saying is that this may have been what kicked started the parents conflict. And there must have been some shred of validity at the time as GOSH started the ethics process, didn't they. Then the child deteriorated.

So the family might reasonably have thought, well if you'd started this process 4 weeks before then ..... what if ......

Hi Rhodiola brilliant news! Send lonelymummy and little ballerina my thoughts and best wishes please!

It's an online discussion Deux, people responds to points raised. Let's hope they won't anymore because you told them to stop.