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

[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.

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

And? Ibuprofen etc. come in prescription form too, when you could just take 4 regular ones. Whatever.

[Anonymous]

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

[Anonymous]

Anonymous wrote:

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.

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

And? Ibuprofen etc. come in prescription form too, when you could just take 4 regular ones. Whatever.

This is why we all have to deal with ridiculous insurance company prior authorization rules. Because people who DON'T NEED prescriptions insist on getting them, when they cost 10x as much and may not work. (Prescription ibuprofen does NOT cost more than generic ibuprofen, but Leucovorin costs $1-2 per pill compared to a methyl folate supplement for about 10 cents.)

[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 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.

[Anonymous]

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.

Thank you for proving the point. Merely giving advice that thousands of pediatricians give every day about proper hydration would lead people like you to think he was recommending toxic amounts of water. What is wrong with you, seriously?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

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

And? Ibuprofen etc. come in prescription form too, when you could just take 4 regular ones. Whatever.

This is why we all have to deal with ridiculous insurance company prior authorization rules. Because people who DON'T NEED prescriptions insist on getting them, when they cost 10x as much and may not work. (Prescription ibuprofen does NOT cost more than generic ibuprofen, but Leucovorin costs $1-2 per pill compared to a methyl folate supplement for about 10 cents.)

Then don't sell prescription ibuprofen.

[Anonymous]

The real question is if the problem is related to folate, why are so many mothers folate deficient? Is there a solution like they found for spinal bifida? Are Autism and Spinal Bifida related?

[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.

Right there is another study that suggests it limits the effectiveness of certain ADHD meds.

[Anonymous]

Anonymous wrote:The real question is if the problem is related to folate, why are so many mothers folate deficient? Is there a solution like they found for spinal bifida? Are Autism and Spinal Bifida related?

We'll never know because RFK Jr has found the answers and all further research is being cancelled and defunded.

I'm not kidding.

[Anonymous]

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.

Thank you for proving the point. Merely giving advice that thousands of pediatricians give every day about proper hydration would lead people like you to think he was recommending toxic amounts of water. What is wrong with you, seriously?

Why would you take ANY health advice from a man who is talking about Tylenol and then just casually lumps in Advil and aspirin? They are all pain relievers but they weren't part of the study that found a correlation and they aren't even in the same drug class as Tylenol. HE IS AN IDIOT, you cannot trust ANYTHING he says to be accurate.

[Anonymous]

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?

[Anonymous]

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?

Yes. And I'm the one that posted earlier that my kid has autism, has been on Deplin for years, and it hasn't affected their autism symptoms. I'm also a health researcher and think it is ridiculous for anyone, with a medical degree (Dr Oz) or without (Trump, RFK Jr) to push an off-label use of a medication in a press conference.

[Anonymous]

Anonymous wrote:

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.

Treating kids as unwitting lab rats, on something that might cause aggression isn't a trivial matter.

[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.

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.

[Anonymous]

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.

Thank you for proving the point. Merely giving advice that thousands of pediatricians give every day about proper hydration would lead people like you to think he was recommending toxic amounts of water. What is wrong with you, seriously?

Look it's true if you read other threads on this forum about leucovorin, they are quite hopeful and positive. And now suddenly Trump is mentioning it and people are coming out of the woodwork to share all the caveats and side effects and risks. I think there are a lot of people posting here just to prove (mostly to themselves) that Trump is an idiot.

AND he is an idiot. If you read the actual studies it is quite true that the evidence for giving leucovorin to every child with an autism diagnosis is not there. It is true that Trump and RFK and pushing this drug without evidence, while simultaneously cutting funding for the research that would help us actually understand this.