More evidence for folate malabsorption in Neurodivergent bodies

[Anonymous]

My DC had a remarkable improvement in verbal just by going on a gluten-free, dairy- free diet...but could I just give the folate and skip the diet? That would be amazing as the diet has become cumbersome.

[Anonymous]

If anyone has a family member who took the FRAT test and it came back positive it would be great if you could report back on what happened next. Was Leucovorin prescribed?Thank you.

[Anonymous]

Anonymous wrote:This is very interesting and now the thought has to be with pregnancy supplements possibly being the cause.

Because most autistic and neurodivergent kids seem to come from middle and upper middle class getting proper supplements and care. Although I still think age of mother plays a very important part that society doesn’t want to admit.

Most known autistic and neurodivergent kids come from middle to upper middle class families.
The ones from lower class families probably don't receive the diagnosis because their families don't have the energy, awareness, effort, knowledge, and resources to seek out help.
It's a self selected diagnosed group.

[Anonymous]

We are the maps recommender. My son is 3 months on Leucovorin right now. Big improvements in socialization, decreased to no tantrums, more flexible thinking, more energy, overall happier kid. It’s amazing. You have to go completely dairy free ( exception is clarified butter as they’ve gotten the protein out). The cow protein is very similar to ours and the child will continue to produce the autoabtibody if exposed to dairy.

This is prevalent in adhd too so worth bringing it up to your provided.

This is the group who will be most familiar with it but you could attempt to get regular ped or functional med doctor to order.

https://www.medmaps.org/

We submit everything through insurance and although ours is a pain even united health care will accept testing as medically necessary and cover cost.

[Anonymous]

I’ve looked through MAPS website but couldn’t find a provider who has had experience with prescribing Leucovorin. Do you mind sharing who prescribed for your son?

My daughter’s FRAT test came out positive (I convinced my ped to order the test although I paid all out of pocket) but I’m completely lost in finding a doctor who can prescribe. I found one developmental pediatrician who said she’s done it before but she completely ghosted.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is very interesting and now the thought has to be with pregnancy supplements possibly being the cause.

Because most autistic and neurodivergent kids seem to come from middle and upper middle class getting proper supplements and care. Although I still think age of mother plays a very important part that society doesn’t want to admit.

Most known autistic and neurodivergent kids come from middle to upper middle class families.
The ones from lower class families probably don't receive the diagnosis because their families don't have the energy, awareness, effort, knowledge, and resources to seek out help.
It's a self selected diagnosed group.

That may be true of mild to moderate ASD cases, but severe autism seems more common in minority and lower income communities. My younger kid went to FCPS PAC at a school where the local population was around 50% white non Hispanic. His PAC class had 7 kids - 2 white, the rest minorities and mostly lower income immigrants. The half day classes for kids with less severe disabilities was similar.

People with more resources are more likely to seek a diagnosis for a kid who is struggling with behavior, but still in mainstream classes, has academic strengths, etc. but quirky. The more severe cases where it is evident that the child has a disability, there is an intellectual disability, injurious behaviors, severe behavioral concerns - it seems more common in lower income families and areas.

[Anonymous]

Anonymous wrote:I’ve looked through MAPS website but couldn’t find a provider who has had experience with prescribing Leucovorin. Do you mind sharing who prescribed for your son?

My daughter’s FRAT test came out positive (I convinced my ped to order the test although I paid all out of pocket) but I’m completely lost in finding a doctor who can prescribe. I found one developmental pediatrician who said she’s done it before but she completely ghosted.

This gives me strong MAHA vibes. you should probably save your money for therapy instead of this. The fact that you cannot find a doctor to prescribe this stuff should tell you something …

[Anonymous]

Anonymous wrote:This is very interesting and now the thought has to be with pregnancy supplements possibly being the cause.

Because most autistic and neurodivergent kids seem to come from middle and upper middle class getting proper supplements and care. Although I still think age of mother plays a very important part that society doesn’t want to admit.

This comment reminded me we are living in The Handmaid’s Tale now. Age of the mother?
I would think Age of the father and fitness of the sperm is a more important part. Women tend to not have children after 35-40, but tons of men have children much later. Many men plan on it feeling they can “play around and just marry some 25 year old when I am 45”.

[Anonymous]

I'm bumping this to see if anyone has had the FRAT testing done or can speak to other experience with leucovorin or high dose folinic acid.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’ve looked through MAPS website but couldn’t find a provider who has had experience with prescribing Leucovorin. Do you mind sharing who prescribed for your son?

My daughter’s FRAT test came out positive (I convinced my ped to order the test although I paid all out of pocket) but I’m completely lost in finding a doctor who can prescribe. I found one developmental pediatrician who said she’s done it before but she completely ghosted.

This gives me strong MAHA vibes. you should probably save your money for therapy instead of this. The fact that you cannot find a doctor to prescribe this stuff should tell you something …

DP. I hate this line of thinking. There’s studies on the efficacy it’s not MAHA territory. You don’t even know her financial situation to immediately suggest it’s an either or situation. 99% of doctors are not keeping abreast of any research about anything that has come out since they were in medical school.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’ve looked through MAPS website but couldn’t find a provider who has had experience with prescribing Leucovorin. Do you mind sharing who prescribed for your son?

My daughter’s FRAT test came out positive (I convinced my ped to order the test although I paid all out of pocket) but I’m completely lost in finding a doctor who can prescribe. I found one developmental pediatrician who said she’s done it before but she completely ghosted.

This gives me strong MAHA vibes. you should probably save your money for therapy instead of this. The fact that you cannot find a doctor to prescribe this stuff should tell you something …

Hello
This is OP. I have not been reading this board for a few months.

We are in montgomery county. We did find a provider who ordered the tests. One child came back positive, one negative.

To address the question about doctors who can prescribe leucovorin- any doctor can. They "dont know about it," not because its a scam but because its entirely novel. You may find better results by going to a neurologists but literally any doctor can prescribe leucovorin.
If you find your doctor will not sit and read the studies and understand the very simple dosing, then this doctor shouldn't be treating your autistic child.

The science behind this has been published in top peer reviewed journals. I can't imagine knowing your child may have an immune disorder that is causing a vitamin deficiency and not testing/treating it.

For our son who tested positive we have seen great improvements in communication, experience and mood.

I will do an AMA here if there is interest.

The main take away is that if you have an autistic child you must get them tested for folate receptor alpha auto antibodies via the FRAT test which is available through fratnow.com but must be ordered by a physician.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’ve looked through MAPS website but couldn’t find a provider who has had experience with prescribing Leucovorin. Do you mind sharing who prescribed for your son?

My daughter’s FRAT test came out positive (I convinced my ped to order the test although I paid all out of pocket) but I’m completely lost in finding a doctor who can prescribe. I found one developmental pediatrician who said she’s done it before but she completely ghosted.

This gives me strong MAHA vibes. you should probably save your money for therapy instead of this. The fact that you cannot find a doctor to prescribe this stuff should tell you something …

Op again.. I had to go Google what maha meant.
How very ironic that you dismiss the science of testing for an antibody while trying to separate yourself from quackery

[Anonymous]

I wish this thread could stay on the topic of folate absorption, testing, and treatment rather than get into the socio-economics of ASD and MAHA etc.

[Anonymous]

Dr. Trifilleti in NJ uses leucovorin for ASD and possibly for PANS/PANDAS

[Anonymous]

How do we know this is causative and not a correlation? Many people with autism also have epilepsy, ADHD, anxiety, Celiac, Type 1 diabetes, but none of those are causative.