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.

+100

[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.

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.

DP. Unwitting lab rats? Leucovorin has been used in pediatric cancer patients since the 1950s. If I had a nonverbal autistic kid I’m not sure that I would choose not to try something that could foster speech because of potential behavior side effects.

[Anonymous]

I think this title is misleading. Leucovorin has been approved as a drug for decades. They are changing the labeling.

[Anonymous]

They’ve never done large scale studies to determine safety, dosing, side effects, etc.
sounds unsafe to me.

[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?

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?

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

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.

Yes they do. I have some in 800mg. I would have not picked it up if it was me, but DH got it for me at the pharmacy after I broke some ribs. And counter to the PP, I paid the same $5 we pay for all prescriptions, which is much more than it cost over the counter. What you pay depends on your plan, but mine is flat rate, any prescription is $5.

[Anonymous]

Anonymous wrote:They’ve never done large scale studies to determine safety, dosing, side effects, etc.
sounds unsafe to me.

You mean like they didn’t for the COVID vaccine? I agree, unsafe.

[Anonymous]

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.

[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?

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?

[Anonymous]

Anonymous wrote:

Anonymous wrote:They’ve never done large scale studies to determine safety, dosing, side effects, etc.
sounds unsafe to me.

You mean like they didn’t for the COVID vaccine? I agree, unsafe.

Make sense, congenital, chronic neurodevelopmental disorders are the same as novel, fatal, viral diseases spread by respiratory droplets so we should approach the development of therapeutics for them in the same way.

[Anonymous]

Anonymous wrote:

Anonymous wrote:They’ve never done large scale studies to determine safety, dosing, side effects, etc.
sounds unsafe to me.

You mean like they didn’t for the COVID vaccine? I agree, unsafe.

Oh, come on. They did large scale studies to determine safety of covid vaccines on children, two of mine participated in them. Don’t be silly.

[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?

neither, I said "their vaccines", which anyone would understand to mean whatever was on the vaccine schedule at the time

no reason to think adding 10, 20, or 30 more vaccines over 18 years of infancy, childhood, and adolescence would increase any health risk--children (everyone) are exposed to hundreds of pathogens every day and our immune systems deal with them

[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).

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)

[Anonymous]

Anonymous wrote:

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.

“Vitamin” is a marketing and regulatory label. Not an actual category that reflects the risks and benefits of the substance, nor the science that has assessed the veracity of claims related to the risks and benefits.