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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

Youre right. I should have added thats water soluble. It isnt toxic nor build up in the human body.
Here's a list of side effects for the most common asd drugs plus leucovorin
Risperidone – can cause metabolic syndrome (weight gain, diabetes, high cholesterol), movement disorders (tardive dyskinesia, Parkinsonism), and hormonal effects (high prolactin → bone loss, reproductive issues).

Aripiprazole (Abilify) – generally less severe than risperidone, but can still cause movement disorders, metabolic changes, and rarely neuroleptic malignant syndrome.

Leucovorin – generally well tolerated, serious side effects are rare; it’s mainly supportive/filling in folate and not associated with long-term organ damage

Those two medications are for totally different autism symptoms. That’s an inapt comparison and just more evidence that you have no clue what you are talking about. I won’t even get into the notion that because it is “water soluable” that it is harmless.

Sorry you've been so wrong and are keeping yourself sick because of it. Thats sad.

Sorry you are terminally stupid. I guess your mom didn’t take her prenatal.

Remember back in the spring when I explained the FRAT and leucovorin and you accused me of working for the lab that does rhe FRAT test? I hope you mentioned that incident to your psychiatrist. Is it called paranoid delusions?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

Same. We have an excellent psychiatrist to advise us.

Your psychiatrist has known about these studies since 2016. Your child's brain has been developing with a potential folate deficiency while your excellent psychiatrist decided they weren't satisfied enough to even order the test to see if your child's develop brain has the antibodies via a si.ple blood test.

If it isnt clear: your psychiatrist could have tested to see whether or not your child has this immune disorder. They decided not to. They could have given your child a very well studied vitamin. They chose not to. All while your child's brain passed developmental milestones and windows of therapy closed. Because they chose not to.

I mean, other research shows that too much folate *causes* autism. You have an exceedingly stupid and shallow understanding of how all this works. That doesn’t mean I dispute the PP who believes it is having an impact - just that the *science has not been done* and we all know why Trump and RFK Jr are touting it. It’s not because it’s a new medical breakthrough for autism.

There is no research that shows too much folate causes autism. There is a faulty paper that had the answer right infront of them the whole time. High blood folate levels are associated with the inability to metabolize that folate into the central nervous system.

lol yes there is. There absolutely is research linking high folate levels in mothers to autism. https://publichealth.jhu.edu/2016/too-much-folate-in-pregnant-women-increases-risk-for-autism-study-suggests

I don’t understand why you MAHAs don’t just STFU and do the science properly instead of making sh*t up.

I told you it's flawed and why.

Oh right. Everything you don’t like is “flawed” but everything you do like is “your psychiatrist is committing malpractice not to prescribe.” Got it!

Anyway here is more research linking high folate to autism: https://pmc.ncbi.nlm.nih.gov/articles/PMC5796848/

FWIW I don’t know what the right answer is (because the research has not been done). I do know that it is absurd to think RFK knows the answer.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

Youre right. I should have added thats water soluble. It isnt toxic nor build up in the human body.
Here's a list of side effects for the most common asd drugs plus leucovorin
Risperidone – can cause metabolic syndrome (weight gain, diabetes, high cholesterol), movement disorders (tardive dyskinesia, Parkinsonism), and hormonal effects (high prolactin → bone loss, reproductive issues).

Aripiprazole (Abilify) – generally less severe than risperidone, but can still cause movement disorders, metabolic changes, and rarely neuroleptic malignant syndrome.

Leucovorin – generally well tolerated, serious side effects are rare; it’s mainly supportive/filling in folate and not associated with long-term organ damage

Those two medications are for totally different autism symptoms. That’s an inapt comparison and just more evidence that you have no clue what you are talking about. I won’t even get into the notion that because it is “water soluable” that it is harmless.

Sorry you've been so wrong and are keeping yourself sick because of it. Thats sad.

Sorry you are terminally stupid. I guess your mom didn’t take her prenatal.

Remember back in the spring when I explained the FRAT and leucovorin and you accused me of working for the lab that does rhe FRAT test? I hope you mentioned that incident to your psychiatrist. Is it called paranoid delusions?

If you actually have a basis to provide medical advice or an expert assessment of the evidence, tell us your credentials.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

Youre right. I should have added thats water soluble. It isnt toxic nor build up in the human body.
Here's a list of side effects for the most common asd drugs plus leucovorin
Risperidone – can cause metabolic syndrome (weight gain, diabetes, high cholesterol), movement disorders (tardive dyskinesia, Parkinsonism), and hormonal effects (high prolactin → bone loss, reproductive issues).

Aripiprazole (Abilify) – generally less severe than risperidone, but can still cause movement disorders, metabolic changes, and rarely neuroleptic malignant syndrome.

Leucovorin – generally well tolerated, serious side effects are rare; it’s mainly supportive/filling in folate and not associated with long-term organ damage

Those two medications are for totally different autism symptoms. That’s an inapt comparison and just more evidence that you have no clue what you are talking about. I won’t even get into the notion that because it is “water soluable” that it is harmless.

Sorry you've been so wrong and are keeping yourself sick because of it. Thats sad.

Sorry you are terminally stupid. I guess your mom didn’t take her prenatal.

Remember back in the spring when I explained the FRAT and leucovorin and you accused me of working for the lab that does rhe FRAT test? I hope you mentioned that incident to your psychiatrist. Is it called paranoid delusions?

If you actually have a basis to provide medical advice or an expert assessment of the evidence, tell us your credentials.

Why would anyone believe what the pp claims for credentials?

There are, however, peer-reviewed papers to look at. I get the immediate instinct to discount anything that RFK and Trump say, but why not ignore what they say and look at the available data?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

Youre right. I should have added thats water soluble. It isnt toxic nor build up in the human body.
Here's a list of side effects for the most common asd drugs plus leucovorin
Risperidone – can cause metabolic syndrome (weight gain, diabetes, high cholesterol), movement disorders (tardive dyskinesia, Parkinsonism), and hormonal effects (high prolactin → bone loss, reproductive issues).

Aripiprazole (Abilify) – generally less severe than risperidone, but can still cause movement disorders, metabolic changes, and rarely neuroleptic malignant syndrome.

Leucovorin – generally well tolerated, serious side effects are rare; it’s mainly supportive/filling in folate and not associated with long-term organ damage

Those two medications are for totally different autism symptoms. That’s an inapt comparison and just more evidence that you have no clue what you are talking about. I won’t even get into the notion that because it is “water soluable” that it is harmless.

Sorry you've been so wrong and are keeping yourself sick because of it. Thats sad.

Sorry you are terminally stupid. I guess your mom didn’t take her prenatal.

Remember back in the spring when I explained the FRAT and leucovorin and you accused me of working for the lab that does rhe FRAT test? I hope you mentioned that incident to your psychiatrist. Is it called paranoid delusions?

If you actually have a basis to provide medical advice or an expert assessment of the evidence, tell us your credentials.

Why would anyone believe what the pp claims for credentials?

There are, however, peer-reviewed papers to look at. I get the immediate instinct to discount anything that RFK and Trump say, but why not ignore what they say and look at the available data?

For the MILLIONTH TIME: I don’t think anyone here is disputing that it may be promising. The point is that the research is not done yet and Trump and RFK are pretending that it is, for political reasons.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

Youre right. I should have added thats water soluble. It isnt toxic nor build up in the human body.
Here's a list of side effects for the most common asd drugs plus leucovorin
Risperidone – can cause metabolic syndrome (weight gain, diabetes, high cholesterol), movement disorders (tardive dyskinesia, Parkinsonism), and hormonal effects (high prolactin → bone loss, reproductive issues).

Aripiprazole (Abilify) – generally less severe than risperidone, but can still cause movement disorders, metabolic changes, and rarely neuroleptic malignant syndrome.

Leucovorin – generally well tolerated, serious side effects are rare; it’s mainly supportive/filling in folate and not associated with long-term organ damage

Those two medications are for totally different autism symptoms. That’s an inapt comparison and just more evidence that you have no clue what you are talking about. I won’t even get into the notion that because it is “water soluable” that it is harmless.

Sorry you've been so wrong and are keeping yourself sick because of it. Thats sad.

Sorry you are terminally stupid. I guess your mom didn’t take her prenatal.

Remember back in the spring when I explained the FRAT and leucovorin and you accused me of working for the lab that does rhe FRAT test? I hope you mentioned that incident to your psychiatrist. Is it called paranoid delusions?

If you actually have a basis to provide medical advice or an expert assessment of the evidence, tell us your credentials.

Why would anyone believe what the pp claims for credentials?

There are, however, peer-reviewed papers to look at. I get the immediate instinct to discount anything that RFK and Trump say, but why not ignore what they say and look at the available data?

For the MILLIONTH TIME: I don’t think anyone here is disputing that it may be promising. The point is that the research is not done yet and Trump and RFK are pretending that it is, for political reasons.

And again, you're holding these to a higher standard than other drugs because you rightfully dislike and distrust everything Trump and RFK do.

Here we have a drug with a long history of use demonstrating safety. And a set of studies over a decade demonstrating some degree of efficacy.

Is there room to study it more? Of course there is. Is this drug appropriate and effective for everyone? No, certainly not. But it does have much better safety profile than other drugs for ASD.

I suspect a lot of the pushback in this thread are from parents that either don't have kids with ASD or that have kids with ASD that have lower support needs. Either way, they're from people that haven't been blindly trying far more dangerous medications with minimal success.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Can you really buy this over the counter? Can someone post a link if so? I know that folinic acid is not the same as methlyfolate.

As a mom of an ASD boy with limited verbal communication, I am interested in trying this. I am obviously concerned about side effects but I think people are not taking into consideration how debilitating it is to struggle with communication. I watch my child struggle all day every day. So from my perspective this drug or vitamin is worth a try. I think everyone understands it is not a cure... but it seems it has helped some kids.

Its a prescription drug. The question is, is a study with 40 kids a good enough reason to give your kid a prescription drug (already approved, this is an off-label use), that may or may not work, or would you prefer to wait a couple of years for actual studies that would figure out a) how do we figure out which kids it works for, b) what are the correct doses and dispensing instructions and c) what other factors (like speech therapy) should be provided in conjunction for the drug treatment to be most effective?

Wait, that's a false choice because DOGE and RFK Jr. fired everyone at the NIH and cancelled all the university research funding for autism.

What do you think the answer would be if you asked parents if they wanted to try a drug now with a long safety history, that might not help, but that might lead to small-to-moderate improvements to verbal communication? Or if they'd rather wait for a couple years as their kid falls further and further behind?

They'd jump toward it.

I really don't think a lot of the posters here understand what kids and parents are already going through with medications. Even established drugs used for on-label indications have low efficacy and significant negative effects.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

DP. So do you not take anything the FDA approves ever? To me the area lacking research is for efficacy for autism. But it’s been approved for other uses for 70 years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

Youre right. I should have added thats water soluble. It isnt toxic nor build up in the human body.
Here's a list of side effects for the most common asd drugs plus leucovorin
Risperidone – can cause metabolic syndrome (weight gain, diabetes, high cholesterol), movement disorders (tardive dyskinesia, Parkinsonism), and hormonal effects (high prolactin → bone loss, reproductive issues).

Aripiprazole (Abilify) – generally less severe than risperidone, but can still cause movement disorders, metabolic changes, and rarely neuroleptic malignant syndrome.

Leucovorin – generally well tolerated, serious side effects are rare; it’s mainly supportive/filling in folate and not associated with long-term organ damage

Those two medications are for totally different autism symptoms. That’s an inapt comparison and just more evidence that you have no clue what you are talking about. I won’t even get into the notion that because it is “water soluable” that it is harmless.

Sorry you've been so wrong and are keeping yourself sick because of it. Thats sad.

Sorry you are terminally stupid. I guess your mom didn’t take her prenatal.

Remember back in the spring when I explained the FRAT and leucovorin and you accused me of working for the lab that does rhe FRAT test? I hope you mentioned that incident to your psychiatrist. Is it called paranoid delusions?

If you actually have a basis to provide medical advice or an expert assessment of the evidence, tell us your credentials.

Why would anyone believe what the pp claims for credentials?

There are, however, peer-reviewed papers to look at. I get the immediate instinct to discount anything that RFK and Trump say, but why not ignore what they say and look at the available data?

For the MILLIONTH TIME: I don’t think anyone here is disputing that it may be promising. The point is that the research is not done yet and Trump and RFK are pretending that it is, for political reasons.

And again, you're holding these to a higher standard than other drugs because you rightfully dislike and distrust everything Trump and RFK do.

Here we have a drug with a long history of use demonstrating safety. And a set of studies over a decade demonstrating some degree of efficacy.

Is there room to study it more? Of course there is. Is this drug appropriate and effective for everyone? No, certainly not. But it does have much better safety profile than other drugs for ASD.

I suspect a lot of the pushback in this thread are from parents that either don't have kids with ASD or that have kids with ASD that have lower support needs. Either way, they're from people that haven't been blindly trying far more dangerous medications with minimal success.

I am absolutely not holding the drug to “higher standards.” I am saying that RFK and Trump are touting results that have not yet been established by research.

And actual autism experts agree:

“ The September 22 press conference held by U.S. Health and Human Services alarms us researchers who committed our entire careers to better understanding autism,” the Coalition of Autism Scientists wrote in a statement. The group consists of more than 260 leading autism researchers in the U.S. “The data cited do not support the claim that Tylenol causes autism and leucovorin is a cure, and only stoke fear and falsely suggest hope when there is no simple answer.”

“With this in mind,” the group added, “we do not support any recommendation from the HHS or FDA regarding increased use of folinic acid. Instead, we call for a well-designed, large scale clinical trial of leucovorin (folinic acid) with all of the rigor needed (biomarkers, proper endpoints) and, most importantly, a pre-registered analysis plan.””

https://www.thetransmitter.org/spectrum/autism-experts-question-hhs-statements-on-tylenol-leucovorin/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

DP. So do you not take anything the FDA approves ever? To me the area lacking research is for efficacy for autism. But it’s been approved for other uses for 70 years.

It’s like talking to a wall but I will try again.

The fact that this drug has been used in the past or subjected to (small) studies in autism does not mean that the research has actually been done to know if it actually works for autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can you really buy this over the counter? Can someone post a link if so? I know that folinic acid is not the same as methlyfolate.

As a mom of an ASD boy with limited verbal communication, I am interested in trying this. I am obviously concerned about side effects but I think people are not taking into consideration how debilitating it is to struggle with communication. I watch my child struggle all day every day. So from my perspective this drug or vitamin is worth a try. I think everyone understands it is not a cure... but it seems it has helped some kids.

Its a prescription drug. The question is, is a study with 40 kids a good enough reason to give your kid a prescription drug (already approved, this is an off-label use), that may or may not work, or would you prefer to wait a couple of years for actual studies that would figure out a) how do we figure out which kids it works for, b) what are the correct doses and dispensing instructions and c) what other factors (like speech therapy) should be provided in conjunction for the drug treatment to be most effective?

Wait, that's a false choice because DOGE and RFK Jr. fired everyone at the NIH and cancelled all the university research funding for autism.

What do you think the answer would be if you asked parents if they wanted to try a drug now with a long safety history, that might not help, but that might lead to small-to-moderate improvements to verbal communication? Or if they'd rather wait for a couple years as their kid falls further and further behind?

They'd jump toward it.

I really don't think a lot of the posters here understand what kids and parents are already going through with medications. Even established drugs used for on-label indications have low efficacy and significant negative effects.

DP. How does this excuse Trump and RFK Jr engaging in this pump & dump scheme? When they are literally the two people in the entire country who could make the research happen so parents would have more to go on than “maybe this will help”.

And you are wholly ignorant if you think there is somehow no possibility of negative side effects. because of course the trials have *not been done* to find out.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would hope that most competent providers would wait for actual evidence, instead of relying on the say-so of two non-doctors who also believe that horse dewormer cures covid.

There are numerous small scale studies from all over the world. There was an announcement yesterday of 50M in funding for lather studies.
Any doctor who tells you that they can not prescribe a vitamin for your autistic child is not the doctor for you.

Any person who thinks calling something a “vitamin” somehow makes the case for it being benign or safe sorely misunderstands the issues.

DP. So do you not take anything the FDA approves ever? To me the area lacking research is for efficacy for autism. But it’s been approved for other uses for 70 years.

It’s like talking to a wall but I will try again.

The fact that this drug has been used in the past or subjected to (small) studies in autism does not mean that the research has actually been done to know if it actually works for autism.

Many of the drugs used for autism don't ultimately work for autism. And many of them have much more serious side effects than leucovorin.

So we have a drug with a long and solid safety history, some open-label prospective trials with limited, but promising, results, and two double-blind RCTs with positive findings on efficacy and side effects.

It's not like there are effective alternatives here.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can you really buy this over the counter? Can someone post a link if so? I know that folinic acid is not the same as methlyfolate.

As a mom of an ASD boy with limited verbal communication, I am interested in trying this. I am obviously concerned about side effects but I think people are not taking into consideration how debilitating it is to struggle with communication. I watch my child struggle all day every day. So from my perspective this drug or vitamin is worth a try. I think everyone understands it is not a cure... but it seems it has helped some kids.

Its a prescription drug. The question is, is a study with 40 kids a good enough reason to give your kid a prescription drug (already approved, this is an off-label use), that may or may not work, or would you prefer to wait a couple of years for actual studies that would figure out a) how do we figure out which kids it works for, b) what are the correct doses and dispensing instructions and c) what other factors (like speech therapy) should be provided in conjunction for the drug treatment to be most effective?

Wait, that's a false choice because DOGE and RFK Jr. fired everyone at the NIH and cancelled all the university research funding for autism.

What do you think the answer would be if you asked parents if they wanted to try a drug now with a long safety history, that might not help, but that might lead to small-to-moderate improvements to verbal communication? Or if they'd rather wait for a couple years as their kid falls further and further behind?

They'd jump toward it.

I really don't think a lot of the posters here understand what kids and parents are already going through with medications. Even established drugs used for on-label indications have low efficacy and significant negative effects.

DP. How does this excuse Trump and RFK Jr engaging in this pump & dump scheme? When they are literally the two people in the entire country who could make the research happen so parents would have more to go on than “maybe this will help”.

And you are wholly ignorant if you think there is somehow no possibility of negative side effects. because of course the trials have *not been done* to find out.

Who said there was no possibility of negative side effects? Of course there is. But there's a 70-year history demonstrating safety, and recent studies involving kids with ASD demonstrating minimal side effects occurring at similar rates as placebo. Compare that to risperidone and Abilify. Or even methylphenidate and guanfacine.

Would I like to see more studies? Of course. Do I want to wait until they're done before looking at whether it plausibly might work for my son? Definitely not.

More studies are unlikely to answer the main question of efficacy: whether it will help my son. We've tried several on-label and commonly prescribed off-label medications over the years. Most didn't work. Many led to significantly worse behaviors. The available data on Leucovorin tells a pretty convincing story that it's better than most of what we've been through. It probably won't work, but it probably won't do as much harm as the other things we've tried.

You could probably call me a combination of selfish and impatient. But I've got a kid currently taking much more dangerous drugs with lackluster results at a critical time in his development. Waiting 2 or 3 years for a well-organized RCT would come too late. The odds of success are small, I know, but even small successes could be life-changing. Weighed against the outcome of doing nothing differently with my child, it seems like a very easy choice from a risk-benefit perspective.

[Anonymous]

Anonymous wrote:

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

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

Dolly Parton did more to develop the vaccine than Trump.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can you really buy this over the counter? Can someone post a link if so? I know that folinic acid is not the same as methlyfolate.

As a mom of an ASD boy with limited verbal communication, I am interested in trying this. I am obviously concerned about side effects but I think people are not taking into consideration how debilitating it is to struggle with communication. I watch my child struggle all day every day. So from my perspective this drug or vitamin is worth a try. I think everyone understands it is not a cure... but it seems it has helped some kids.

Its a prescription drug. The question is, is a study with 40 kids a good enough reason to give your kid a prescription drug (already approved, this is an off-label use), that may or may not work, or would you prefer to wait a couple of years for actual studies that would figure out a) how do we figure out which kids it works for, b) what are the correct doses and dispensing instructions and c) what other factors (like speech therapy) should be provided in conjunction for the drug treatment to be most effective?

Wait, that's a false choice because DOGE and RFK Jr. fired everyone at the NIH and cancelled all the university research funding for autism.

What do you think the answer would be if you asked parents if they wanted to try a drug now with a long safety history, that might not help, but that might lead to small-to-moderate improvements to verbal communication? Or if they'd rather wait for a couple years as their kid falls further and further behind?

They'd jump toward it.

I really don't think a lot of the posters here understand what kids and parents are already going through with medications. Even established drugs used for on-label indications have low efficacy and significant negative effects.

DP. How does this excuse Trump and RFK Jr engaging in this pump & dump scheme? When they are literally the two people in the entire country who could make the research happen so parents would have more to go on than “maybe this will help”.

And you are wholly ignorant if you think there is somehow no possibility of negative side effects. because of course the trials have *not been done* to find out.

Pump and dump? This drug is generic.
If you missed the news conference yesterday, RFK made an announcement that fifty million dollars was being allocated into research for larger scale studies.