So smiley!

[Anonymous]

Anonymous wrote:

Anonymous wrote:You write like a spammer and you aren't providing the information people actually need. That's why people ignore you. It's not because they're burned out (though they are). It's because you aren't persuasive. You sound like you're trying to sell essential oils.

For anyone who would actually like to read real studies:

https://pmc.ncbi.nlm.nih.gov/articles/PMC7477301/

https://www.nejm.org/doi/full/10.1056/NEJMoa043160

https://pmc.ncbi.nlm.nih.gov/articles/PMC3578948/

Pound sand. Pp. It was a parent sharing a success which is much more readable than a bunch of link drops that have zero relationship with actual autism parenting. But thanks a sh!t ton for "Cerebral folate deficiency (CFD) syndrome is a recently described neurometabolic disorder characterized by low concentrations of 5-methyltetrahydrofolate (5MTHF) in the cerebrospinal fluid (CSF), despite normal systemic folate levels. CFD is believed to be caused by the impaired transport of folates across the blood–brain barrier. The first reported cases of CFD manifested severe neurodevelopmental symptoms including spastic paraplegia, cerebellar ataxia, dyskinesia, seizures, acquired microcephaly and developmental regression, which occurred as early as 4 months of age.1, 2 Central visual disturbances (optic atrophy and blindness) and hearing loss occurred after age 3 and 6 years, respectively, in some cases.2"


Et, al! Lmao

Personally I find that a lot more helpful than "Omg so smiley! THEY mystery they have found..."

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why is he on it?

They have found that 75% of autistic people have an underlying immune condition where their bodies mistakenly create antibodies thatbattack the folate receptors. This results in a folaye deficiency in the brain. * The brain needs folate to function properly.
Since a huge majority of autistic people have this underlying condition, every autistic person should be tested for this.

* please note that a regular serum folate tesr does NOT show folate deficiency because this is not caused by lack of ingesting enough folate. The problem occurs when the body tries to transport that folate across the blood- brain barrier. Those specific folate receptors are comprised and can't do their job. So blood test is fine but if you did a spinal tap you would find low levels of folate in the spinal fluid. Obviously they dont want to do such an invasive procedure, so Dr Quadros devised a test to look for and measure the auto antibodies. If the antibodies exist you can reasonably assume there is a lack of folate in the nervous system/brain

Please share a citation and explain who "they" are.

Why are people like you so awful? Its obvious "they" are the researchers that op wrote about. And there were numerous descriptions of where to find more information if you would like citations.

Oh where were these numerous descriptions? OP name-checked one researcher, that's it, so I found some stuff by googling.

OP complained that people don't follow up. But they don't follow up because OP isn't providing the information and OP's tone is spammy, like she's trying to draw attention before making a sales pitch.

Hey, if you dont follow up on a potential therapy for your child because youre too lazy to hit the Google search bar thats no ones issue except your own and your poor child's. Don't take it out on the board.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You write like a spammer and you aren't providing the information people actually need. That's why people ignore you. It's not because they're burned out (though they are). It's because you aren't persuasive. You sound like you're trying to sell essential oils.

For anyone who would actually like to read real studies:

https://pmc.ncbi.nlm.nih.gov/articles/PMC7477301/

https://www.nejm.org/doi/full/10.1056/NEJMoa043160

https://pmc.ncbi.nlm.nih.gov/articles/PMC3578948/

Pound sand. Pp. It was a parent sharing a success which is much more readable than a bunch of link drops that have zero relationship with actual autism parenting. But thanks a sh!t ton for "Cerebral folate deficiency (CFD) syndrome is a recently described neurometabolic disorder characterized by low concentrations of 5-methyltetrahydrofolate (5MTHF) in the cerebrospinal fluid (CSF), despite normal systemic folate levels. CFD is believed to be caused by the impaired transport of folates across the blood–brain barrier. The first reported cases of CFD manifested severe neurodevelopmental symptoms including spastic paraplegia, cerebellar ataxia, dyskinesia, seizures, acquired microcephaly and developmental regression, which occurred as early as 4 months of age.1, 2 Central visual disturbances (optic atrophy and blindness) and hearing loss occurred after age 3 and 6 years, respectively, in some cases.2"


Et, al! Lmao

Personally I find that a lot more helpful than "Omg so smiley! THEY mystery they have found..."

I get that weekends are hard for you, pp but the rest of us share in the joy of a parent having a nice moment

[Anonymous]

OP is complaining that people don't follow up. But OP can't see that their own writing style is one of the reasons.

[Anonymous]

75% of autistic people have this? Really? Cite?

[Anonymous]

Anonymous wrote:Just sharing a win!
Ds (level1) has been on leucovorin for about 3 months now.
We've noticed so many small improvements in engagement, mood, conversation but the best one has to be the smiles!
Today he came to show us something and had completely normall eye contact and the biggest, most beautiful smile the whole time! My heart is FULL!!!

We’re considering this for our low verbal ASD DD. Unfortunately, she is on risperdone which might lead to adverse effects with leucovorin per the report. Her psychiatrist should be able to give us guidance on whether to proceed.

[Anonymous]

Anonymous wrote:Another troll trying to take advantage of patents of SN children.

DP. Doesn’t sound like a troll to me. Look at the research links.

[Anonymous]

Anonymous wrote:Just sharing a win!
Ds (level1) has been on leucovorin for about 3 months now.
We've noticed so many small improvements in engagement, mood, conversation but the best one has to be the smiles!
Today he came to show us something and had completely normall eye contact and the biggest, most beautiful smile the whole time! My heart is FULL!!!

This gives me hope. My DD used to be so smiley and has lost language over the years deapite our many interventions. We also have had a significant increase in stereotypical behaviors and self harm.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Another troll trying to take advantage of patents of SN children.

DP. Doesn’t sound like a troll to me. Look at the research links.

What's trolly about it is the huge claim "75% of autistic people" with no cite. Best I can tell, there is a study that found 75% of the 93 study participants had it, and a minority of them had some improvement during the treatment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Another troll trying to take advantage of patents of SN children.

DP. Doesn’t sound like a troll to me. Look at the research links.

What's trolly about it is the huge claim "75% of autistic people" with no cite. Best I can tell, there is a study that found 75% of the 93 study participants had it, and a minority of them had some improvement during the treatment.

The NIH study linked here said ONE-THIRD of the 93 children treated with leucovorin showed MODERATE to MUCH IMPROVEMENT.

“ Compared with controls, significantly higher improvement ratings were observed in treated children over a mean period of 4 months in verbal communication, receptive and expressive language, attention and stereotypical behavior. Approximately one-third of treated children demonstrated moderate to much improvement. The incidence of adverse effects was low. This study suggests that FRAs may be important in ASD and that FRA-positive children with ASD may benefit from leucovorin calcium treatment”

[Anonymous]

Anonymous wrote:Another troll trying to take advantage of patents of SN children.

It an over the counter vitamin. What's the angle?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Another troll trying to take advantage of patents of SN children.

DP. Doesn’t sound like a troll to me. Look at the research links.

What's trolly about it is the huge claim "75% of autistic people" with no cite. Best I can tell, there is a study that found 75% of the 93 study participants had it, and a minority of them had some improvement during the treatment.

The NIH study linked here said ONE-THIRD of the 93 children treated with leucovorin showed MODERATE to MUCH IMPROVEMENT.

“ Compared with controls, significantly higher improvement ratings were observed in treated children over a mean period of 4 months in verbal communication, receptive and expressive language, attention and stereotypical behavior. Approximately one-third of treated children demonstrated moderate to much improvement. The incidence of adverse effects was low. This study suggests that FRAs may be important in ASD and that FRA-positive children with ASD may benefit from leucovorin calcium treatment”

Right but someone else provided that, not OP. OP made an assertion with no cite. And in the study you reference, there weren't 93 children treated. It says "In all, 44 children (age mean=6 years 10 months; s.d.=2 years 8 months; range 2 years 11 months to 15 years 0 months) of the 70 FRA-positive (either blocking or binding autoantibody or both) children were treated..." So it's not a very big study and not a very big treatment group. That doesn't make it un-interesting or un-important. But it doesn't support OP's much, much broader assertion that 75% of all individuals with ASD have an underlying immune condition related to folate. Maybe OP has some other study to point to.

[Anonymous]

This is an amazing study in pendantry and negativity.
The SUNY professor notes a similiar figure at 12:20 https://youtu.be/3DruLBCFxFE?si=NFgzc5FYTw1rtwXC
I guess he's part of the plot? Lol

[Anonymous]

I am so happy for you.