Discussion
hairykrishna said:
The doctors did not say Ashya King had no chance. What they said was, in his particular case, proton therapy had no significant advantage over the advanced conventional radiotherapy that he would get in this country. Given that he was very ill transporting him to the US or across Europe introduced risks that treating him here didn't and would introduce a further delay to his treatment. They therefore thought that he should get treated here.
Luckily Ashya seems to be ok. Cancer treatment is an odds game. In the view of lots of senior oncologists he would have had slightly better odds if he'd followed the conventional route.
That's not true at all. The only treatment available here was going to leave Ashya King a vegetable in a wheelchair. And they were going to do it anyway.Luckily Ashya seems to be ok. Cancer treatment is an odds game. In the view of lots of senior oncologists he would have had slightly better odds if he'd followed the conventional route.
The whole thing was a disgrace, from the doctor's decision to the arrest warrant, and the parents have since been vindicated.
Edited by grumbledoak on Monday 3rd July 21:31
On the other hand, what would you do if it was your kid? Thankfully we can't be definitive.
They are the ones who'll suffer of course. I feel sorry for them and won't judge. There's no satisfactory way out.
I also feel for those who have to make decisions as to what's best. Not something I'd want to do.
They are the ones who'll suffer of course. I feel sorry for them and won't judge. There's no satisfactory way out.
I also feel for those who have to make decisions as to what's best. Not something I'd want to do.
grumbledoak said:
That's not true at all. The only treatment available here was going to leave Ashya King a vegetable in a wheelchair. And they were going to do it anyway.
The whole thing was a disgrace, from the doctor's decision to the arrest warrant, and the parents have since been vindicated.
Nonsense. Treating medullobastoma with conventional radiotherapy does not leave kids as wheelchair bound 'vegetables'. The whole thing was a disgrace, from the doctor's decision to the arrest warrant, and the parents have since been vindicated.
Edited by grumbledoak on Monday 3rd July 21:31
I'm not sure 'vindicated' is the word I'd use. They decided not to let him have chemotherapy alongside his radiotherapy. That reduces the 5 year survival from the best case of ~80% to ~50%.
Edited by hairykrishna on Monday 3rd July 22:08
hairykrishna said:
Nonsense. Treating medullobastoma with conventional radiotherapy does not leave kids as wheelchair bound 'vegetables'.
I'm not sure 'vindicated' is the word I'd use. They decided not to let him have chemotherapy alongside his radiotherapy. That reduces the 5 year survival from the best case of ~80% to ~50%.
No. Again misrepresented. Why? I'm not sure 'vindicated' is the word I'd use. They decided not to let him have chemotherapy alongside his radiotherapy. That reduces the 5 year survival from the best case of ~80% to ~50%.
The parents chose proton therapy over conventional X-Ray radiotherapy because the long term side effects of cooking an child's entire brain are - unsurprisingly - pretty awful.
https://www.thebraintumourcharity.org/understandin...
So the doctor threatened to use an emergency Protection Order to take their child from them and impose his treatment.
grumbledoak said:
No. Again misrepresented. Why?
The parents chose proton therapy over conventional X-Ray radiotherapy because the long term side effects of cooking an child's entire brain are - unsurprisingly - pretty awful.
https://www.thebraintumourcharity.org/understandin...
Proton beam radiotherapy is no different in this case. Whether conventional or proton beam, the only accepted treatment is whole brain and whole spine radiotherapy.The parents chose proton therapy over conventional X-Ray radiotherapy because the long term side effects of cooking an child's entire brain are - unsurprisingly - pretty awful.
https://www.thebraintumourcharity.org/understandin...
Proton beam has a definite theoretical advantage in that it is able to deliver the same brain/spine dose while getting much less dose to other organs, and therefore reducing the long-term risk of cancer in those organs.
However, to claim that whole brain radiotherapy delivered by proton beam has fewer brain related symptoms than whole brain radiotherapy delivered by conventional techniques is preposterous, when the aim is to deliver the same (or higher) dose.
Wiccan of Darkness said:
Good stuff.
Thanks for this. My daughter is studying Applied Science with a view to moving into this field, probably in cancer treatment, and I recognise much of this from the material she has been studying.I'm going to send on your post as I am sure she will be very interested. It's also good to read something that strips away all the emotion in what is a very upsetting case. Thanks.
grumbledoak said:
No. Again misrepresented. Why?
The parents chose proton therapy over conventional X-Ray radiotherapy because the long term side effects of cooking an child's entire brain are - unsurprisingly - pretty awful.
https://www.thebraintumourcharity.org/understandin...
So the doctor threatened to use an emergency Protection Order to take their child from them and impose his treatment.
You have no idea what you are talking about. It was explained to you couple of times. Re-read those posts. The parents chose proton therapy over conventional X-Ray radiotherapy because the long term side effects of cooking an child's entire brain are - unsurprisingly - pretty awful.
https://www.thebraintumourcharity.org/understandin...
So the doctor threatened to use an emergency Protection Order to take their child from them and impose his treatment.
Wiccan has probably convinced me that the US treatment is futile, how have the doctors over there been mislead by the parents? And what was the experimental treatment due to involve?
Also do the doctors have any idea whether the poor little lad is in pain at all? I'm assuming he doesn't cry?
Also do the doctors have any idea whether the poor little lad is in pain at all? I'm assuming he doesn't cry?
Wiccan of Darkness said:
Tankrizzo said:
Thanks for the detailed explanation Wiccan, fills in a few gaps from the published stories.
No probs. I'm in a position where I fully understand the condition (it's complex, hence why the media have so far got it hideously wrong) plus able to explain it to a layperson. Does help that it's my job to do just that.I cannot see what this 'treatment' that the BBC have said actually is, considering the only treatment/cure is to successfully replicate the DNA in new cells that does not carry the fault.
My professional opinion is pretty clear cut. There was never any chance of the child living, not with the specific type of mitochondrial disease he had. Transcriptase impairment has one of three outcomes, that is blastula failure, foetal abortion and infant death.
It's worth noting that conception is extremely common. During the bit where the egg genes and the sperm genes meet, the DNA is often fatally damaged. Since 50% of our genes (about 12,000) are required for life itself, another 6000 genes for being organisms with more than 1 cell, 4000 genes because we're animals and not plants, and 2000 genes to make us human and not nematodes then there's a chance that the DNA that gets corrupted is for something important.
When that happens, we have a specific gene for programmable self destruct. It's perfectly normal and useful during gestation as during development, some cells have to be destroyed. Occasionally that fails to happen, and a good example is people with webbed feet.
But the point is, if there's anything fundamentally wrong with the genes post fertilisation, the embryo will naturally abort. This happens more often than people think, or realise.
Nearly every copulation will result in fertilisation. 95% of these, will fail and the resulting ball of cells is naturally aborted at the next menstrual cycle. Mitochondrial disorders such as Charlies, are one such reason for early gestational termination.
The science and technology exists to screen for this condition, and treat it in vitro. The question is at what point do we as a society expect a free healthcare system to intervene, and at what point do we say no to a treatment.
grumbledoak said:
No. Again misrepresented. Why?
Treatment for medullobastoma involves ‘cooking’ the entire brain and spinal column. Not all of the infiltrating tumour can be seen on imaging so it’s all irradiated. Treatment, as with most radiotherapy, relies on the differing repair characteristics of tumour vs healthy cells. This applies to both protons and conventional radiotherapy. It has to. You’re essentially ‘aiming’ at single cells.The advantage of protons is that there’s a potential for lower dose to heart and lungs.
At the time of the Aysha King case there wasn’t decent published data on treatment with protons. Now there’s a ~50 case study so the balance has changed slightly. Conventional radiotherapy can mean a lot of things these days. When the AK case was in the news I was working with the radiotherapy department of a large NHS trust. The dose distributions they can get from modern IMRT are astonishing. I suspect when the studies get published the gap between the two types of treatment will be very small.
Why are you so convinced you’re correct and where do you get your information? Is it just the newspapers?
I know this is a serious topic but I never thought I would see the day when PH and Mumsnet agree on a subject!
https://www.mumsnet.com/Talk/am_i_being_unreasonab...
https://www.mumsnet.com/Talk/am_i_being_unreasonab...
poo at Paul's said:
BlackLabel said:
poo at Paul's said:
This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?
Re the money raised I hope they give it to Great Ormond Street but given the relations between the parents and the hospital that might be unrealistic. The parents themselves have said they'll set up some kind of charity.bbc said:
"A few people have asked us what we'll do if we don't win the court case," Ms Yates said in a statement posted on the GoFundMe website used to fundraise for his treatment.
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said.
The post has since been deleted and GoFundMe said it would discuss with Charlie's parents what should happen to the monies raised.
http://www.bbc.co.uk/news/uk-england-london-40430188"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said.
The post has since been deleted and GoFundMe said it would discuss with Charlie's parents what should happen to the monies raised.
May they even give it back? Parents running charities with millions of quid in them sits rather uneasy with me.
Wiccan of Darkness said:
No probs. I'm in a position where I fully understand the condition (it's complex, hence why the media have so far got it hideously wrong) plus able to explain it to a layperson. Does help that it's my job to do just that.
I cannot see what this 'treatment' that the BBC have said actually is, considering the only treatment/cure is to successfully replicate the DNA in new cells that does not carry the fault.
My professional opinion is pretty clear cut. There was never any chance of the child living, not with the specific type of mitochondrial disease he had. Transcriptase impairment has one of three outcomes, that is blastula failure, foetal abortion and infant death.
It's worth noting that conception is extremely common. During the bit where the egg genes and the sperm genes meet, the DNA is often fatally damaged. Since 50% of our genes (about 12,000) are required for life itself, another 6000 genes for being organisms with more than 1 cell, 4000 genes because we're animals and not plants, and 2000 genes to make us human and not nematodes then there's a chance that the DNA that gets corrupted is for something important.
When that happens, we have a specific gene for programmable self destruct. It's perfectly normal and useful during gestation as during development, some cells have to be destroyed. Occasionally that fails to happen, and a good example is people with webbed feet.
But the point is, if there's anything fundamentally wrong with the genes post fertilisation, the embryo will naturally abort. This happens more often than people think, or realise.
Nearly every copulation will result in fertilisation. 95% of these, will fail and the resulting ball of cells is naturally aborted at the next menstrual cycle. Mitochondrial disorders such as Charlies, are one such reason for early gestational termination.
The science and technology exists to screen for this condition, and treat it in vitro. The question is at what point do we as a society expect a free healthcare system to intervene, and at what point do we say no to a treatment.
I've been following this case and found your commentary very interesting. I'm very much on your side of the argument but I do wonder, from my much less informed position, whether there was or is any hope at all. I cannot see what this 'treatment' that the BBC have said actually is, considering the only treatment/cure is to successfully replicate the DNA in new cells that does not carry the fault.
My professional opinion is pretty clear cut. There was never any chance of the child living, not with the specific type of mitochondrial disease he had. Transcriptase impairment has one of three outcomes, that is blastula failure, foetal abortion and infant death.
It's worth noting that conception is extremely common. During the bit where the egg genes and the sperm genes meet, the DNA is often fatally damaged. Since 50% of our genes (about 12,000) are required for life itself, another 6000 genes for being organisms with more than 1 cell, 4000 genes because we're animals and not plants, and 2000 genes to make us human and not nematodes then there's a chance that the DNA that gets corrupted is for something important.
When that happens, we have a specific gene for programmable self destruct. It's perfectly normal and useful during gestation as during development, some cells have to be destroyed. Occasionally that fails to happen, and a good example is people with webbed feet.
But the point is, if there's anything fundamentally wrong with the genes post fertilisation, the embryo will naturally abort. This happens more often than people think, or realise.
Nearly every copulation will result in fertilisation. 95% of these, will fail and the resulting ball of cells is naturally aborted at the next menstrual cycle. Mitochondrial disorders such as Charlies, are one such reason for early gestational termination.
The science and technology exists to screen for this condition, and treat it in vitro. The question is at what point do we as a society expect a free healthcare system to intervene, and at what point do we say no to a treatment.
Presumably the brain damage at present is such that the child will never experience an 'awakened' state even if he does live to an older age. I also presume this was a natural consequence of the illness and very little could have been done about it. However, there's a 9 year old child in America who is said to have the same condition. The pictures of him look fairly bleak and I'm not sure what sort of state or level of pain he is in but one would have to assume a slightly better one than Charlie Gard at the moment.
Do you happen to know if the 9 year old child in America mentioned in the news articles has the exact same illness as Charlie Gard or if it's slightly less severe or has involved less complications? If so, is there a distinction between them, i.e. perhaps the 9 year old child got a treatment of some sort at an earlier age than Charlie Gard?
ModernAndy said:
Wiccan of Darkness said:
No probs. I'm in a position where I fully understand the condition (it's complex, hence why the media have so far got it hideously wrong) plus able to explain it to a layperson. Does help that it's my job to do just that.
I cannot see what this 'treatment' that the BBC have said actually is, considering the only treatment/cure is to successfully replicate the DNA in new cells that does not carry the fault.
My professional opinion is pretty clear cut. There was never any chance of the child living, not with the specific type of mitochondrial disease he had. Transcriptase impairment has one of three outcomes, that is blastula failure, foetal abortion and infant death.
It's worth noting that conception is extremely common. During the bit where the egg genes and the sperm genes meet, the DNA is often fatally damaged. Since 50% of our genes (about 12,000) are required for life itself, another 6000 genes for being organisms with more than 1 cell, 4000 genes because we're animals and not plants, and 2000 genes to make us human and not nematodes then there's a chance that the DNA that gets corrupted is for something important.
When that happens, we have a specific gene for programmable self destruct. It's perfectly normal and useful during gestation as during development, some cells have to be destroyed. Occasionally that fails to happen, and a good example is people with webbed feet.
But the point is, if there's anything fundamentally wrong with the genes post fertilisation, the embryo will naturally abort. This happens more often than people think, or realise.
Nearly every copulation will result in fertilisation. 95% of these, will fail and the resulting ball of cells is naturally aborted at the next menstrual cycle. Mitochondrial disorders such as Charlies, are one such reason for early gestational termination.
The science and technology exists to screen for this condition, and treat it in vitro. The question is at what point do we as a society expect a free healthcare system to intervene, and at what point do we say no to a treatment.
I've been following this case and found your commentary very interesting. I'm very much on your side of the argument but I do wonder, from my much less informed position, whether there was or is any hope at all. I cannot see what this 'treatment' that the BBC have said actually is, considering the only treatment/cure is to successfully replicate the DNA in new cells that does not carry the fault.
My professional opinion is pretty clear cut. There was never any chance of the child living, not with the specific type of mitochondrial disease he had. Transcriptase impairment has one of three outcomes, that is blastula failure, foetal abortion and infant death.
It's worth noting that conception is extremely common. During the bit where the egg genes and the sperm genes meet, the DNA is often fatally damaged. Since 50% of our genes (about 12,000) are required for life itself, another 6000 genes for being organisms with more than 1 cell, 4000 genes because we're animals and not plants, and 2000 genes to make us human and not nematodes then there's a chance that the DNA that gets corrupted is for something important.
When that happens, we have a specific gene for programmable self destruct. It's perfectly normal and useful during gestation as during development, some cells have to be destroyed. Occasionally that fails to happen, and a good example is people with webbed feet.
But the point is, if there's anything fundamentally wrong with the genes post fertilisation, the embryo will naturally abort. This happens more often than people think, or realise.
Nearly every copulation will result in fertilisation. 95% of these, will fail and the resulting ball of cells is naturally aborted at the next menstrual cycle. Mitochondrial disorders such as Charlies, are one such reason for early gestational termination.
The science and technology exists to screen for this condition, and treat it in vitro. The question is at what point do we as a society expect a free healthcare system to intervene, and at what point do we say no to a treatment.
Presumably the brain damage at present is such that the child will never experience an 'awakened' state even if he does live to an older age. I also presume this was a natural consequence of the illness and very little could have been done about it. However, there's a 9 year old child in America who is said to have the same condition. The pictures of him look fairly bleak and I'm not sure what sort of state or level of pain he is in but one would have to assume a slightly better one than Charlie Gard at the moment.
Do you happen to know if the 9 year old child in America mentioned in the news articles has the exact same illness as Charlie Gard or if it's slightly less severe or has involved less complications? If so, is there a distinction between them, i.e. perhaps the 9 year old child got a treatment of some sort at an earlier age than Charlie Gard?
Have been looking on twitter and it's really disguising, people really seem to think that Charlie can be cured and the "evil" doctors at GOSH won't let it happen. When one of the GOSH staff are attacked, i hope these people will be ashamed of themselves
The Vatican have offered to move him to their children's hospital.
https://www.google.co.uk/amp/www.independent.co.uk...
They want to move a critically ill child from one of the best children's hospitals in the world to this place....
http://www.cbsnews.com/news/associated-press-bambi...
https://www.google.co.uk/amp/www.independent.co.uk...
They want to move a critically ill child from one of the best children's hospitals in the world to this place....
http://www.cbsnews.com/news/associated-press-bambi...
ModernAndy said:
I've been following this case and found your commentary very interesting. I'm very much on your side of the argument but I do wonder, from my much less informed position, whether there was or is any hope at all.
Presumably the brain damage at present is such that the child will never experience an 'awakened' state even if he does live to an older age. I also presume this was a natural consequence of the illness and very little could have been done about it. However, there's a 9 year old child in America who is said to have the same condition. The pictures of him look fairly bleak and I'm not sure what sort of state or level of pain he is in but one would have to assume a slightly better one than Charlie Gard at the moment.
Do you happen to know if the 9 year old child in America mentioned in the news articles has the exact same illness as Charlie Gard or if it's slightly less severe or has involved less complications? If so, is there a distinction between them, i.e. perhaps the 9 year old child got a treatment of some sort at an earlier age than Charlie Gard?
Do you have a link to this other childs case, I'm workign at the moment and just used lunch break to comment elsewhere. If the other child is 9 then I'd expect the mitochondrial DNA damage is linked to a respiratory protein. Charlie, by contrast has DNA damage that codes for the enzyme that is needed to replicate ALL respiratory proteins. As these proteins are fundamentally important, there's duplicate DNA to code for them, or the damage affects the tertiary and not quaternary state which would be a very mild form of mitochondrial disease (I use the term mild loosely, as a moderate form is very fatal and a severe form won't make it past week 12 of gestation).Presumably the brain damage at present is such that the child will never experience an 'awakened' state even if he does live to an older age. I also presume this was a natural consequence of the illness and very little could have been done about it. However, there's a 9 year old child in America who is said to have the same condition. The pictures of him look fairly bleak and I'm not sure what sort of state or level of pain he is in but one would have to assume a slightly better one than Charlie Gard at the moment.
Do you happen to know if the 9 year old child in America mentioned in the news articles has the exact same illness as Charlie Gard or if it's slightly less severe or has involved less complications? If so, is there a distinction between them, i.e. perhaps the 9 year old child got a treatment of some sort at an earlier age than Charlie Gard?
I'll have a look at what I can find out about the 9 yo and report back later tonight. I can tell you now though, without looking that it will be a different form of the disease.
Roofless Toothless said:
There are two sets of doctors involved here.
One set in London working for the NHS say that he has no chance.
The other set in the USA say that treatment is worth a go.
The second set will be paid tens of thousands of dollars for the course.
Which do you trust?
Also one set of those doctors is fully conversant with the situation and one set are not.One set in London working for the NHS say that he has no chance.
The other set in the USA say that treatment is worth a go.
The second set will be paid tens of thousands of dollars for the course.
Which do you trust?
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