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

[Anonymous]

Anonymous wrote:Is this for real? Every legitimate scientific research paper says ASD isn't treatable, only comorbidities like anxiety, depression, etc are recommend for treatment

Leucovorin isnt FOR autism. Its for Cerebral Folate Deficiency. It just happens that 60 to 70 percent of autistic people have Cerebral Folate Deficiency.

[Anonymous]

So my autistic child started leucovorin for the + FRAT test. First slowly to 25 mg twice daily then we increased to final dose of 50 mg twice daily. It had been incredible to see the difference in behavior, all for the better. He was low energy before so all the temporary hyperactivity didn’t happen with us. He has decreased stimming, decreased anxiety, increased eye contact with strangers and better overall behavior. I am truly amazed and very grateful we tried this. Side effects are nothing compared to other behavior meds for ASD as another poster stated. For us this was life changing.

-a (democratic) doctor

[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.

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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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).

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)

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.

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?

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.

There was nothing rigorous or persuasive about this, obviously. We don’t know the risks and benefits because the research has not been done. And are you truly saying that the HEAD OF HHS and the PRESIDENT have no more power than to “throw stuff against the wall and see what sticks”? come on. That’s absurd.

[Anonymous]

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.

[Anonymous]

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.

[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.

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

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is this for real? Every legitimate scientific research paper says ASD isn't treatable, only comorbidities like anxiety, depression, etc are recommend for treatment

Leucovorin isnt FOR autism. Its for Cerebral Folate Deficiency. It just happens that 60 to 70 percent of autistic people have Cerebral Folate Deficiency.

Citation?

[Anonymous]

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.

[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.

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.

[Anonymous]

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.

[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.

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.

[Anonymous]

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.

[Anonymous]

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.