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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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

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

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).

[Anonymous]

Anonymous wrote:

Anonymous wrote:I hate that I'm bringing this up after a Trump/RFK press event, but has anyone been able to get the test for the folate abnormality? My understanding is that autoimmune disorders in the family are a risk factor, which are common in our family.

Which test? The FRAT test or the spinal one? We did the former and my kid did not have the antibodies. It was a couple of hundred dollars and out of pocket.

The FRAT blood test. I don't think the odds are high enough to warrant a lumbar puncture. But a blood test? Sure.

How did you get it? It sounds like most labs don't do it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

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

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

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).

The bolded is a very big "if." And not mentioned at his inappropriate press conference.

[Anonymous]

I’m a non pediatrician physician but I’m trying to imagine if these goons made a suggestion like this for something in my field.

To say I would be skeptical is an understatement but I would probably do a lit review and speak to colleagues about their experiences (if any) of using it off-label before the announcement. Doctors use things off label all the time so I have to imagine if there were a consensus that this worked it would already be relatively common practice.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:this coming from the one who said drink bleach

And who got your precious COVID vaccine made, you forget that

He was surrounded by physicians back then. Now look at his team. They have no medical background.

That’s not true. Dr. Oz, who has a financial stake in a supplement company that sells folinic acid, was right there with the dotard who can’t pronounce acetaminophen and the guy whose brain has been addled by heroin addiction, a parasitic worm, mercury poisoning from eating tuna daily, and likely steroid abuse.

I saw this online yesterday and wasn’t sure if it was true so I did a little search. First, I found that when I googled “folinic acid supplement” the first image to pop up was the iHerb supplement, followed by a sponsored search result at the top of the page. iHerb is currently a privately held company and interestingly enough the NYT wrote about its connection to Dr. Oz back in February. He’s been unclear about whether or not he has divested his interest in the company.

https://www.nytimes.com/2025/02/19/health/mehmet-oz-medicare-medicaid-stocks.html#:~:text=Dr.%20Oz%2C%2064%2C%20also,separate%20ownership%20stake%20in%20iHerb.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think you wait for evidence based trials.

lol for a vitamin? Also there have been multiple trials

It’s not “a vitamin”. It is a medication. And no there have not been anywhere close to the necessary trials. Those that have been done also show the side effects that for many of our kids are the most severe autism symptoms - aggression and tamtrums. Our kids deserve better than this.

I mean it is literally a vitamin. You can buy it at the grocery store without a prescription. Vitamins can be dangerous especially if taken in very large doses. That doesn't change the fact that they are vitamins.

[Anonymous]

Does anyone know anyone who has tried this medication and seen results?

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’m going to wait until it’s approved in Canada or Europe. I’d be happy for my child to take it is it’s safe and IF my child is shown to have the sub-type of autism that is improved by the medication.

This is a sensible approach.

Seeing if your kid has the sub-type of autism that is improved by the medication requires a spinal tap to confirm that folate is not present in cerebral-spinal fluid. Current administration is saying "just give your kid this drug and see if they improve." That is not how they did it in the (small) studies.

[Anonymous]

Anonymous wrote:I hate that I'm bringing this up after a Trump/RFK press event, but has anyone been able to get the test for the folate abnormality? My understanding is that autoimmune disorders in the family are a risk factor, which are common in our family.

Ha, they test your cerebral spinal fluid to see if folate has crossed the blood-brain barrier, which means a spinal tap

[Anonymous]

Anonymous wrote:

Anonymous wrote:I hate that I'm bringing this up after a Trump/RFK press event, but has anyone been able to get the test for the folate abnormality? My understanding is that autoimmune disorders in the family are a risk factor, which are common in our family.

Which test? The FRAT test or the spinal one? We did the former and my kid did not have the antibodies. It was a couple of hundred dollars and out of pocket.

Antibody test isn't proof though

[Anonymous]

Anonymous wrote:I do not agree with the Tylenol/Autism association!

But to answer a previous question:

MTHFR gene test.

Was looking into it for an autoimmune condition where some with the genetic variation are helped (not cured) by 5-MTHF supplement.

This is not the supplement used for autism as it does not cross the brain barrier.

My kid has autism, has the MTHFR gene issue (diagnosed through genetic testing), has been on a very expensive prescription folate supplement (Deplin) for six years, and I assure you it has not cured their autism.

[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.

[Anonymous]

Anonymous wrote: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.

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

[Anonymous]

Anonymous wrote: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.

Then you might as well just buy folate (not folic acid) supplements at the drugstore and have the person with autism take that.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

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

So stop if it does. The sky is not falling here.