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

[Anonymous]

Anonymous wrote:I swear that if Trump said drinking lots of water was good for kids some of you would dehydrate your own offspring to death.

If only Trump did not say such dumb*ss sh*t and appoint psychotic drug addicts to key health administration positions, all the while gutting science research … then maybe what he had to say would merit discussion.

[Anonymous]

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.

Wow, approving a drug with a 40 person trial is nuts.

There are actually multiple trials going way back. We live in DC but my dd has been a patient of one of the main trials dr (Frye, Rossignol) for years. My DD does show on the FrAT test that Leucovorin should help her. She’s been on it for four years with no real change, so I hesitate for people to jump on this as a cure. I’m on a lot of chat boards and things, and the number of people who think rfk and trump have just cured autism is terrifying.

+1. I can see why parents in your position would try this. But given how uneven the course of autism is, trying to discern whether a medication or therapy caused a long term improvement is gonna be extremely difficult and require a LOT more study.

[Anonymous]

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.

[Anonymous]

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.

Wow, approving a drug with a 40 person trial is nuts.

There are actually multiple trials going way back. We live in DC but my dd has been a patient of one of the main trials dr (Frye, Rossignol) for years. My DD does show on the FrAT test that Leucovorin should help her. She’s been on it for four years with no real change, so I hesitate for people to jump on this as a cure. I’m on a lot of chat boards and things, and the number of people who think rfk and trump have just cured autism is terrifying.

That’s heart breaking, exploiting hopeful parents with fake information. That’s mean.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I swear that if Trump said drinking lots of water was good for kids some of you would dehydrate your own offspring to death.

If Trump was accurately quoting medical advice people might follow it. He's not a doctor and in this case was not quoting medical advice and frequently states things so inaccurately that he is giving bad advice--drinking too much water can be toxic.

Sounds like CNN talking points. Did you even watch the press conference?

The one where Trump advised parents to space out vaccinations so their child only gets one per year because the current recommended childhood vaccine schedule puts too much liquid into the baby? And he couldn’t pronounce acetaminophen? And had trouble forming a sentence at one point?

Again CNN talking points, clearly you did not watch the whole thing.

I don’t watch CNN. These things actually happened during the press conference.

[Anonymous]

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?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I swear that if Trump said drinking lots of water was good for kids some of you would dehydrate your own offspring to death.

If Trump was accurately quoting medical advice people might follow it. He's not a doctor and in this case was not quoting medical advice and frequently states things so inaccurately that he is giving bad advice--drinking too much water can be toxic.

Sounds like CNN talking points. Did you even watch the press conference?

The one where Trump advised parents to space out vaccinations so their child only gets one per year because the current recommended childhood vaccine schedule puts too much liquid into the baby? And he couldn’t pronounce acetaminophen? And had trouble forming a sentence at one point?

Again CNN talking points, clearly you did not watch the whole thing.

I don’t watch CNN. These things actually happened during the press conference.

Apparently you missed the MAHA talking points though!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I swear that if Trump said drinking lots of water was good for kids some of you would dehydrate your own offspring to death.

If Trump was accurately quoting medical advice people might follow it. He's not a doctor and in this case was not quoting medical advice and frequently states things so inaccurately that he is giving bad advice--drinking too much water can be toxic.

Sounds like CNN talking points. Did you even watch the press conference?

The one where Trump advised parents to space out vaccinations so their child only gets one per year because the current recommended childhood vaccine schedule puts too much liquid into the baby? And he couldn’t pronounce acetaminophen? And had trouble forming a sentence at one point?

Trump's kids got all their vaccines. RFK's kids got all their vaccines. They've both admitted this. It's YOUR kids they want to take the risks.

Their kids are grown, they didn’t take 81 vaccines. Are you dense or purposely obtuse?

Do you even know what you’re talking about? It’s not 80 shots during early childhood. The MMR is 3 separate vaccines in one shot. Children are supposed to get 5 shot series of DTaP. They’re supposed to get a flu shot every year. He’s counting all of these separately. His oldest kids may have not have gotten every vaccine that’s available now, but they’re not too old to have gotten most of the vaccines, and Barron isn’t too old to have gotten any of them.

Kennedy still has a kid in his twenties.

[Anonymous]

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?

Exactly. Leucovorin has shown promise in some small studies for a specific subset of children with autism. The FDA cited a review of the use of leucovorin in 40 patients with a rare metabolic disorder called cerebral folate deficiency that can lead to a range of neurological symptoms, some of which are seen in people with autism. That's no reason for the President, Secretary of Health and Human Services, and head of CMS (Medicaid and Medicare) to hold a White House press conference saying "We have also identified an exciting therapy that may benefit large numbers of children who suffer from autism. Peer-reviewed literature has documented that up to 60 percent of folate deficient children with ASD can have improved verbal communications if given leucovorin. I have instructed NIH, FDA and CMS to help doctors treat children appropriately."

[Anonymous]

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.

[Anonymous]

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)

Another useless liberal.

[Anonymous]

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’ll bet you got ALL the vaccines that caused this too huh Karen?

[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’ll bet you got ALL the vaccines that caused this too huh Karen?

What?

[Anonymous]

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.

[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.

DP. I mean there are already tests available. FRAT is one and there's another that tests spinal fluid.