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Started By
Message
1
Posted on 4/27/18 at 4:46 pm to Pettifogger
quote:Absolutely.
From your posts I think you believe it should be left to the parents, no?
At the same time, I understand the NIH stance to a degree.
Honestly, I believe they are trying to sugarcoat a situation where the honest stance of the British healthcare system is “we will not pay for this child’s long term healthcare if there is no beneficial outcome”.
You can’t come out and say that though.
quote:On any appreciable level to understand it or a response beyond a basic pain reflex? Not likely.
Could he experience pain?
Posted on 4/27/18 at 4:48 pm to Pettifogger
agree with your last statement
the state is an imperfect observer of health concerns and as long as medical professionals can be capable of a misdiagnosis and the government entities that make rulings on medical findings make imperfect observations from those findings I think it is ludicrous to give this third party entity complete power over a child despite the parents objections
the state is an imperfect observer of health concerns and as long as medical professionals can be capable of a misdiagnosis and the government entities that make rulings on medical findings make imperfect observations from those findings I think it is ludicrous to give this third party entity complete power over a child despite the parents objections
Posted on 4/27/18 at 4:55 pm to Scruffy
Even the angle that they simply do not want to waste the resources into keeping this child alive (to a degree, understandable) falls apart when there is another entity willing to take him free of charge and with consent from the parents and the parents are barred via armed guards from doing it.
Posted on 4/27/18 at 4:57 pm to Pettifogger
quote:Lack of diagnosis is what gives me hope that they don't know for sure, and they could be wrong.
By all accounts he's going to die for sure.
Mitochondrial disease... something else.
They've obviously been wrong about his survivability. They potentially could be wrong about his diagnosis and the prognosis.
The biggest point about the health care provided to him is that additional tests could take a year to get results... and they don't want to bother.
Even if it doesn't save poor Alfie, I think it is in his best interest to try to figure it out (and in the best interest of the next kid that has what Alfie does).
When I put myself in this situation... if it were my child... or if I were Alfie... I'm just personally reminded of a quote.
quote:If he's not actively suffering, and he's fighting on, which he is!
It may not save my life, it may save my children’s lives. It may save someone you love, and it’s very important. - Jimmy V
What's the point in preventing the Italians from trying? (or in previous cases the USA or Europe).
Even if it's just to make him comfortable. It saddens me that the government is able to deny the parents the right to travel or seek other treatment.
quote:I agree.
Well, we do it here too, to some extent. Obviously we have different "default" positions, it seems. The most discouraging thing to me is that it's like the parents have the burden to usurp the rights of the state, and not vice versa.
This is what bothers me most.
I know there are sick kids all over the world.
I know there are times where insurance or governments decide to stop treatment.
Those cases are sad... but part of life.
The state holding the kid hostage in the hospital is just shocking to me.
Posted on 4/27/18 at 4:59 pm to DirtyMikeandtheBoys
Makes me proud to be an italian citizen.
Posted on 4/27/18 at 5:07 pm to Ross
quote:True, but what do you do long term?
Even the angle that they simply do not want to waste the resources into keeping this child alive (to a degree, understandable) falls apart when there is another entity willing to take him free of charge and with consent from the parents and the parents are barred via armed guards from doing it.
Let’s say that this kid goes to Italy to have trach placed so that he can breath via a ventilator and has a g-tube placed so that he is fed.
Will he stay there? Will the parents bring him back to the UK? Will the national health system have to support him?
I believe the parents should have control over the management of their child’s care and they should get the choice to go. The NIH will be footing the bill in the future. These kids are always in and out if the hospital.
I see this all the time in the hospital. I currently have a pt that sleeps almost 24 hrs a day, doesn’t move, isn’t responsive, is not aware of anything around him, doesn’t take anything by mouth and is fed by g-tube, has daily seizures, and will in no way improve medically. He is paid for through our taxes.
I’ll admit that I could never understand the parents situation. It is overall frustrating for everyone.
Parents have that choice here due to our system and mindset. They don’t.
This post was edited on 4/27/18 at 5:13 pm
Posted on 4/27/18 at 5:22 pm to Ross
quote:
as long as medical professionals can be capable of a misdiagnosis and the government entities that make rulings on medical findings make imperfect observations from those findings I think it is ludicrous to give this third party entity complete power over a child despite the parents objections
Ashya King is a perfect example.
quote:Can you believe this shite?!?!?!!!??!
An eight-year-old boy has been cleared of cancer, three years after his parents were jailed for abducting him from an NHS hospital to seek innovative brain tumour treatment abroad.
Ashya King was due to undergo chemotherapy and radiotherapy at Southampton General Hospital in August 2014, when his parents fled with him to Spain. They feared the treatment being prescribed by his doctors would leave him badly brain damaged and believed his best chance lay in innovative proton beam therapy being pioneered in Europe.
Brett and Naghemeh King were arrested in Malaga at the behest of the British authorities and jailed in Madrid for 72 hours on child cruelty charges.
Yet... the kid is in 3-years or remission.
Or Charlie Gard. Born with MDDS (encephalomyopathic mitochondrial DNA depletion syndrome).
We don't know how to cure him... so no one else can?
quote:That's 4 months folks. 4 months. Fighting in a courtroom for the right to help your child.
Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside bypass therapy (NBT).
The treatment is not invasive and can be added to food.
A hospital in the US agreed to offer Charlie the treatment, and Charlie's parents had raised £1.3m in funds to take him there.
Doctors wanted life support cut off. Of course, Charlie's parents disagreed with the hospital and did not want his life support to be withdrawn, so doctors applied to the High Court for judges to decide Charlie's future.. with the High Court agreeing with the GOSH doctors.
UK courts took their sweet time, and by the time that decision was made Charlie's condition had greatly worsened and the view was his brain damage was too severe and irreversible for the treatment to help.
*** Sound familiar? ***
On 6 July, the professor co-signed a letter with other medical experts which suggested unpublished data showed therapy could improve the 11-month-old's brain condition. But by the time he's allowed to help. It was too late. Poor Charlie was gone.
The legal battle started on March 3rd.
"Some people felt Charlie should be allowed to die with dignity, while others have disagreed with the doctors, arguing Charlie's parents should be allowed to decide where he is treated."
What is with this "die with dignity" crap? State sponsored talking points?
quote:Yup. Can't have the loyal subjects questioning the system.
Even the angle that they simply do not want to waste the resources into keeping this child alive (to a degree, understandable) falls apart when there is another entity willing to take him free of charge and with consent from the parents and the parents are barred via armed guards from doing it.
Posted on 4/27/18 at 5:30 pm to Bob Sacamano
quote:Always been my favorite European country.
Makes me proud to be an italian citizen.
Positano is still the most beautiful place I've ever been.
Lo studio dell'italiano e parlo un po L'italiano.
And I've been so proud of the Italians in this situation. They are doing all they can to help, and that's all anyone can ask.
Posted on 4/27/18 at 6:03 pm to Scruffy
The medical side of things is grim here and I understand that. My argument is limited in scope to the principle of the matter regarding where the lines should exist on the powers of the state, which I think is a much less difficult question to answer on an ethical level.
I’ll also say if this was my kid, I would not stop at a second or third doctor when they tell me there is no hope (but could tell me the words idiopathic condition), I’d keep trying as long as I had the means and I was sure it wasn’t causing harm to my child to find someone who could give me a diagnosis or even an infinitesimally small glimmer of hope.
I’ll also say if this was my kid, I would not stop at a second or third doctor when they tell me there is no hope (but could tell me the words idiopathic condition), I’d keep trying as long as I had the means and I was sure it wasn’t causing harm to my child to find someone who could give me a diagnosis or even an infinitesimally small glimmer of hope.
This post was edited on 4/27/18 at 6:11 pm
Posted on 4/28/18 at 1:55 am to Ross
Little Alfie passed away tonight.
I'm so sad.
Poor brave little guy fought his arse off.
I'm so sad.
Poor brave little guy fought his arse off.
Posted on 4/28/18 at 2:06 am to Mahootney
fricking murdered by the nanny state.
Posted on 4/28/18 at 2:41 am to fr33manator
We bombed Syria because their government killed innocent children.
Need to send a slew of Tomahawks to Liverpool.
Need to send a slew of Tomahawks to Liverpool.
Posted on 4/28/18 at 2:42 am to Mahootney
quote:
Poor brave little guy fought his arse off.
Posted on 4/28/18 at 3:09 am to fr33manator
quote:
fricking murdered by the nanny state.
100% accurate.
Posted on 4/28/18 at 3:39 am to stuntman
This makes me so angry. frick the UK
Posted on 4/28/18 at 3:49 am to fr33manator
I just cannot believe a government would hold a child hostage against the will of his parents. It’s unconscionable. Those doctors, the hospital, and the high court judges that orchestrated this childs death should all be tried and convicted of murder.
How is it possible that they tell them they can’t seek medical care for their child? This is fricking infuriating.
How is it possible that they tell them they can’t seek medical care for their child? This is fricking infuriating.
Posted on 4/28/18 at 4:46 am to TigerStripes06
I just woke up and found out. I'm devastated. I hope the Italians stand by their promise.
Posted on 4/28/18 at 4:50 am to Mahootney
quote:
The state holding the kid hostage in the hospital is just shocking to me.
I mean they even got him Italian citizenship.
There should be something to where you can just give up your current citizenship and be allowed to move and take your child with you if you want to seek treatment in another country. They had everything set up and ready to go.
It's just absurd they would deny any family the right to seek medical care in another country over legal issues and a judge's order. I can't imagine the frustration that has to cause those close to the situation.
Posted on 4/28/18 at 4:51 am to drunkenpunkin
I would have a hard time as a father not going John Wick on everyone who signed my sons death sentence without exhausting all forms of care being offered by other countries. Would it have helped, I don’t know but I do know that most times doing something is better than doing nothing.
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