I have a question for Matt, if you are still here. How did you get in touch with Genzyme? What do they have to gain by helping you? Developing a recombinant therapeutic drug is an exceedingly expensive and technically-difficult undertaking. Why are they developing a treatment for a condition for which the potential market size is one single patient?
Hunting Down My Son's Killer
151–160 of 339 posts
Re: Hunting Down My Son's Killer
#152why not just perform euthanasia and focus your energy into raising the healthy child?
Because parents love their children, even if they aren't healthy.
Re: Hunting Down My Son's Killer
#153"Unfortunately, we can't just order a batch and inject Bertrand. We need to get FDA approval, and we'll need Genzyme's cooperation. Even though his disease is life-threatening, his seizures are worsening and he continues to lose white matter, we'll need to prove that it's safe." It's shit like this that makes me hate the FDA.
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Re: Hunting Down My Son's Killer
#154Earlier quoted context omitted.
No, it won't. http://en.wikipedia.org/wiki/Medical_uses_of_silver#Adverse_...
Thanks, it looks like the medical industry is trying to bury my post.
I would go see a psychiatrist if I were you.
Paranoid delusions are some of the first signs of a serious underlying mental problem.
Re: Hunting Down My Son's Killer
#155Even though his disease is life-threatening, his seizures are worsening and he continues to lose white matter, we'll need to prove that it's safe. A good argument could be made, that bureaucratic regulators who get nothing if your son is cured, but could get in trouble if something they allow hurts him even more, are partly responsible for slowly killing him. For individuals in a dire enough state, a more intelligent…
The FDA has a concept of http://en.wikipedia.org/wiki/Compassionate_use which would allow them to use the drug even without any proof.
Much as I might complain about the FDA sometimes, things have changed for the better since the days when thousands of people were dying for lack of treatments that had been approved in most European states a decade ago.
Re: Hunting Down My Son's Killer
#156Earlier quoted context omitted.
To be fair to (most) doctors, especially your primary physician, have to diagonose a huge range of conditions. The edge cases are rare and so they are not as well versed on them. System specialists are an order of magnitude better. I.e. going to an Ear, Nose & Throat doctor if you have Asthma. Disease specialists are the pinacle. Sometimes these are researchers rather than normal doctors.
I have a genetic disease that shows up in 4/100k people, so rare, but not that rare. Any sizable town has at least a few dozen people with my disease. In my experience, "an order of magnitude better" in specialists means they've at least heard of it, but know nothing about it. Every time I move, I have to spend some time educating my new specialist on the disease. I know damn well that every time one of them excuses…
4/100k is still exceedingly rare. There are probably 100s or more diseases that show up in 5/100k so it's hard to know them all. Meanwhile the doctor probably sees the top 15 diseases all the time..
My girlfriend has a condition that affects 12% of the female population to a varying degree. Some doctors knew absolutely nothing about it. Some were able to solve it easily.
Re: Hunting Down My Son's Killer
#157This reminds me so much of the story of Lorenzo's Oil.
Re: Hunting Down My Son's Killer
#158So there was a paternity test, right? I'm assuming there was and it just wasn't mentioned in the write up. The author states with authority that he is the father, but doesn't mention the tests confirming it whereas every other finding is linked to the tests involved. Please don't tell me, in an article praising science, that this was left to faith or trust or whatever.
Other than the fact that this is offensive and shouldn't have been posted - did you read the article? The conclusion was that they both had a recessive trait that manifested itself in their son.
Re: Hunting Down My Son's Killer
#159Earlier quoted context omitted.
> But the implication that no one with kids could ever disagree with you is not correct It is impossible to speak about any subject intelligently unless you have experience with it. That's just how reality works. If that offends your sensibilities, may I suggest you're a tad too sensitive?
So you can't have experience of having kids unless you have kids. This is almost along the lines of saying you don't know that getting hit by a car is bad, until you have been. I have plenty of experience with kids, my brothers and sisters have plenty. Not as much experience as a parent, clearly, but enough to know what I want.
Not the same. Getting hit by a car is physical and having a child is very much psychological and emotional.
Someone who's never loved can't say that love is overrated.
Edit: fixed typo
Re: Hunting Down My Son's Killer
#160why not just perform euthanasia and focus your energy into raising the healthy child?
^ this. How is keeping this profoundly sick & disabled child alive not abuse?