Kasen's story

[SFG75]

I listened to this audio presentation yesterday about this remarkable family and their son. I can't imagine the stress and worry that they've experienced. The family will be seeking stem cell treatment in China for their son and they feel confident that it will help him live a better life. A professor whose comments I read in an article, views companies that offer such trips as nothing more than "snake oil treatment" of the 21st century variety. You can read about both perspectives here.


So will the treatment help? Is this more hype than real hope?

In my own opinion, if my kids had any medical condition that was serious, I would seek progressive treatment of the given ailment.

 

[Libra]

In my own opinion, if my kids had any medical condition that was serious, I would seek progressive treatment of the given ailment.

and travel to anywhere possible for it.I agree.

 

[beer good]

In my own opinion, if my kids had any medical condition that was serious, I would seek progressive treatment of the given ailment.

And while that's both commendable and understandable, and while I really don't know enough about medicine to say anything about this particular case (though it looks to me like the doctors are making a pretty good, if depressing, case)... isn't that exactly what some unscrupulous quacks/faith healers/"alternative" medicine practictioners are always happy to exploit?

Obviously, if there is merit to their claims, it should be tested and taken seriously. But to quote the article:

“Show us the evidence,” he says. “Write up a scientific paper and let us review it and let us publish it. If you truly have a miracle cure, why are you keeping it to yourself? Are you that selfish to let children around the world go without vision so you can extract your pound of flesh?”

That's not asking too much, IMO. (Which isn't to say that some of the major pharmaceuticals haven't extracted several megatonnes of flesh by now, but at least they publish their results...)

 

[Libra]

I think you are absolutely right beergood in all that you write.In the meantime though while the two sides argue ,one saying they have the cure and the other saying give us information to test your results (which by the way I agree should be done)these parents are basing their childs health on a little word called "hope" and would do anything.


There are a bunch of quacks out there,a while ago I was reading about the blue scorpion something or other from Cuba,people still go there and bring the venom back in hope of helping a family member and curing Cancer.

The problem is should they wait for the two sides to figure things out first?

 

[beer good]

these parents are basing their childs health on a little word called "hope" and would do anything.

And like I said, I completely understand that and I certainly don't mean to criticize the parents; obviously, they're going to do whatever they have to do for their kid. But at the same time, I'm not fond of people making money by selling false hope to parents too desperate to NOT take a chance. If these people claim to have a cure that contradicts what everyone else has found yet don't want to submit it to actual scientific testing, it should be a big red warning flag.

The problem is should they wait for the two sides to figure things out first?

Actually, and feel free to think I'm heartless... yes, I think it's a good idea to test experimental medical procedures before using them on sick children. That's the reason most countries have a Food and Drug Administration or the like: to make sure that people aren't paying for cures that don't do what they're supposed to do - or at worst, do more harm than good. That's the problem with science: it works, but it takes time. Miracles are quicker, but generally they don't work.

That said, best of luck to Kasen's folks. Doctors have been known to be wrong.

 

[Sybarite]

Aren't the real 'quacks' the ones who have foisted their superstitious beliefs on others by helping to block research into stem cells (and related therapies) in some countries?

 

[Libra]

I'm not fond of people making money by selling false hope to parents too desperate to NOT take a chance. If these people claim to have a cure that contradicts what everyone else has found yet don't want to submit it to actual scientific testing, it should be a big red warning flag.

I don't disagree,I don't think any normal human being would be fond of someone taking advantage of people in painful and desperate situations, which has been done.

Actually, and feel free to think I'm heartless... yes, I think it's a good idea to test experimental medical procedures before using them on sick children. That's the reason most countries have a Food and Drug Administration or the like: to make sure that people aren't paying for cures that don't do what they're supposed to do - or at worst, do more harm than good. That's the problem with science: it works, but it takes time..

Although I understand your thinking,me as a parent,if someone was giving me a glimpse of hope to make my child better I would look into it and not wait ,if I thought my child had any chance of getting better.(I don't think you are heartless either.)

Miracles are quicker, but generally they don't work.

Ithink the parents are just hoping and nothing more.

With that said, more testing should occur because there are alot of children who are dealing with illnesses.

 

[Bob Magness]

From Quackwatch.com regarding Beijing Xishan Institute for Neuroregeneration and Functional Recovery:

In 2006, the journal Neurorehabilitation and Neural Repair published a detailed report on his results with seven patients whom the authors examined before and one or more times within a year after Huang's treatment. The authors concluded: (a) five of the seven patients had significant complications (three had meningitis), (b) none of the patients showed objective evidence of improvement, and (c) unless Huang conducts a proper study, patients would be ill-advised to undergo his treatment.

I completely understand the motives of the parents. Even if there is no chance of something working a parent will do something like this just to be doing something. I do blame the "doctors" however for giving the parents false hope. And in this case not only will the treatment not work, but it could do more harm.

 

[Zolipara]

And like I said, I completely understand that and I certainly don't mean to criticize the parents; obviously, they're going to do whatever they have to do for their kid. But at the same time, I'm not fond of people making money by selling false hope to parents too desperate to NOT take a chance. If these people claim to have a cure that contradicts what everyone else has found yet don't want to submit it to actual scientific testing, it should be a big red warning flag.

The strange thing here is that we allow so much of this through the socalled alternative medicine, and then procede to block real research into things like stem cells because someone claims a fairytale told them it should not be done.

 

[beer good]

if someone was giving me a glimpse of hope to make my child better I would look into it and not wait ,if I thought my child had any chance of getting better.(I don't think you are heartless either.)

Of course. But wouldn't "looking into it" involve listening to what people who have spent years studying the matter say? As opposed to taking a chance with a "cure" that, for all you're able to know as a layperson, may well end up actively hurting your child more than it helps? (Thanks for that link, Bob.)

The strange thing here is that we allow so much of this through the socalled alternative medicine, and then procede to block real research into things like stem cells because someone claims a fairytale told them it should not be done.

All too true. When the people who know what they're doing don't get to do it, the amateurs will always sneak in and take over.

 

[Libra]

Of course. But wouldn't "looking into it" involve listening to what people who have spent years studying the matter say? As opposed to taking a chance with a "cure" that, for all you're able to know as a layperson, may well end up actively hurting your child more than it helps?

The situation and a decision like this for a parent is more like "damned if you do and damned if you don't".I am sure their decision was not an easy one.