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]It’s wild to ignore treatment developments for your child because you don’t like that someone you hate talked about it.  Didn’t you take prenatal vitamins when pregnant?  Folate has long been known to be important for brain development.[/quote]

It's understandable given the source. But just ignore RFK and Trump and look at the existing information and studies.[/quote]

Which are not at all enough to say anything. The main trial was 40 kids. 
[/quote]

That wouldn't be enough to approve a new drug, but it wouldn't be usual for supplemental labeling changes for an already-approved drug, which is the situation here.

If tests find Folate Receptor Alpha Autoantibodies in a patient, this certainly looks like a worthwhile treatment to try. Leucovorin has a long safety record.

I think some of the posters here both think Leucovorin is a new drug (is isn't- it's been approved since the 1950s) and that its use on kids for autism is a new idea (it's not- it's been studied for almost 20 years).[/quote]

Forgive me for having a higher standard than “certainly looks useful to try” - particularly when its side effects exacerbate some of the most serious symptoms of autism (aggressive behavior) [/quote]

DP here. I am not a Trump or RFK supporter and I love vaccines
But do you have an autistic child? Do you treat children with autism? Do you have any relevant experience that would drive you to harp on the side effects of leucovorin or are you just here to bash MAGA? Because this is a forum for parents of kids with special needs and disabilities.

While there are very real and legitimate concerns about the FDA approving the use of leucovorin for autism, there is some research to support its use in certain kids with autism, a test to determine whether it might be useful, and very few doctors that know of this test or are willing to sign off on it. We don't need you to insist it is a horrible idea based on the fact that Trump is horrible. Don't fall into the trap of just opposing everything he supports because he supports it.[/quote]

Yes Karen I do have a child with autism, and I have always been very rigorous with the treatments, tests, therapies and accommodations he gets. It doesn’t take a genius to see that Trump is pushing this because it is the only way to salvage the smoldering disaster that Doge and RFK Jr wreaked on the HHS agencies. It’s a complete farce. That doesn’t mean that the drug should not be studied or doesn’t have merit … just like bleach could be used to disinfect surfaces you shouldn’t drink it as a prophylactic because Trump says so.

To the point - “SOME” research is a drastic departure from the level of research I demand from any medication I give my kid. I would very much like this to continue to be studied in the normal way, like any other pediatric medication. Too bad Trump threw our entire medical research apparatus into disarray huh? [/quote]

I'm not sure what you would find rigorous or persuasive. Drugs like guanfacine were and are frequently prescribed off-label. It isn't highly effective, but the negative side effects also aren't serious, so it often ends up being a first-line treatment (especially in off-label age groups). Stimulants often  increase rigidity and can lead to increased SIBs. Antipsychotics like risperidone and abilify have moderate efficacy, but come with substantial risks.

The reality is, given the lack of safe and highly effective medications for ASD, doctors already use an approach of "throw stuff against the wall and see what sticks." And as bad as that is, it is still better than the alternative.[/quote]

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