Reply to Leucovorin now approved by FDA--will providers prescribe to ASD kids?

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Reply to "Leucovorin now approved by FDA--will providers prescribe to ASD kids?"

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]I mean, there’s not much in the way of harm here.  Folate is water soluble so if it’s too much you just pee it out.  Worth a try anyway.[/quote]

The limited study they did suggests there are potential behavioral side effects to this drug.  So, yes, it could negatively impact kids.[/quote]

So stop if it does.  The sky is not falling here.[/quote]

Treating kids as unwitting lab rats, on something that might cause aggression isn't a trivial matter.[/quote]

That's already the baseline. The patient profile here is already taking a combination of medications that aren't particularly effective, have significant side effects, and that interact with each other in unpredictable ways.

What I find most interesting about this is that it is tied to biochemistry in a way that we can test for (to a certain degree). Pretty much everything else is trial-and-error, sometimes with drugs with not-great safety profiles. Being able to screen for this through a family history and blood test is great, even if it isn't very common. The drug is safe enough it probably just makes sense to try it if the FRAT comes back positive. And even if efficacy is low, that's pretty much the same as the other drugs. [/quote]

Absolutely not. Layering on an under-tested medication is not some kind of advance. As well the “biochemistry” halo is a just-so story. By all means study this medication further but you can’t just make sh*t up. Our kids deserve better research than that. [/quote]

You seem to be holding this to a much different standard than other medications for ASD.

Do I think a press conference with Trump and RFK was the right way to raise this? Of course not. And maybe formally re-labelling is premature- I don't really know. But when dealing with an established drug with a solid safety record, pediatric patients, and a rare condition, a couple/few studies of ~40 kids very well might be enough.

I tend to think it would make more sense to expand access to the FRAT and informally accept off-label use as we get more data on it.[/quote]

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