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][quote=Anonymous][quote=Anonymous][quote=Anonymous]I'm really reticent to jump into this thread because it has turned so political and hostile, but I am surprised no one has mentioned Dr. Rosario Trifiletti in NJ.  We came across his name on this board for PANS/PANDAS but he has spoken on the use of leucovorin for autism.[/quote]

Due to the political angle, the thread drew a lot of attention from people without non-verbal kids. The reaction would have been completely different if Trump and RFK hadn't been involved in the press event.[/quote]

The political angle IS the angle. And of course this is being touted for all kids with autism not just non-verbal kids. It’s not like it was some accident that Trumps and RFK Jr were involved. [/quote]

Your just as guilty of the binary thinking by taking the opposite extreme- that we should withhold it from kids impacted by profound disabilities.

Trump and RFK didn't make up the 20 years of data or the two double-blind RCTs that have already been done. We wouldn't be having this discussion if this was a cancer drug, but a lot people don't particularly care about kids with profound autism because they don't directly see the impact that it has.[/quote]

We wouldn’t be having this discussion about a cancer drug because Trump and RFK jr have not decided to upend and politicize cancer patients they way they have decided to do for autism. I think leucovorin and Tylenol should be studied and assessed using the NORMAL procedures already developed to ensure drugs are safe and effective. I think our kids deserve BETTER research not politicized publicity stunts. [/quote]

Other administrations likely wouldn't have the narcissistic personalities insisting on making it a political event, but there certainly would have been public and political pressure to facilitate use.

You see this in more extreme cases- people pressuring the FDA to open up drugs that *don't* have established safety records for compassionate use.[/quote]

They did a lot more here than compassionate use (which is generally on an individual level and a last ditch effort when the person is dying). Totally different from rushing a med for otherwise physically healthy *children*. [/quote]

These aren't healthy children. They are children with a profound disabilities that have a short window of time during childhood to reach important developmental milestones.

Like "last ditch efforts" for dying cancer patients, this is worth substantial risk. And that's reflected by the side effects of the drugs approved and commonly prescribed for ASD, despite not being particularly effective.

In comparison, Leucovorin has a remarkable safety profile.  Adjusting expectations/demands for efficacy accordingly, there's no rational cost-benefit analysis that wouldn't lead you to conclude it is worth a shot in kids profoundly impacted by autism.[/quote]

I thought we were past the point where we disregarded any harms of autism therapy because autism is uniquely bad. Or are we back to bleach, chelation, shocks and Lovaas abuse? And the label is for autism not “severe autism.”

Also you need to stop comparing leucovorin to Abilify and Risperdal. Those meds are approved for specific severe autism symptoms (aggression) where the benefits may outweigh the risks. They are not for the core autism symptoms that Leucovorin is being touted for. They have nothing to do with each other.

Our kids deserve the best in research not incomplete research pushed by quacks. [/quote]

"Severe autism" isn't a medical term with clear criteria. Even the severity levels are very limited in their ability to describe the symptoms and needs of a patient. The idea that the label is apparently being updated for "autism" does not mean it is appropriate for any patient with autism. That's why doctors need to evaluate patients and determine medications.

Also, the labels for risperidone and Abilify aren't as narrow as you suggest. The label is for "irritability." Of course, you're right that that doctors will generally attempt to try other (often off-label) medications before prescribing risperidone or Abilify, or will reserve it for cases presenting with the most severe or dangerous symptoms, but the label gives doctors, patients, and parents the ability to make the appropriate cost-benefit determinations.[/quote]

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