More evidence for folate malabsorption in Neurodivergent bodies

[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.

[Anonymous]

Anonymous wrote: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.

Because when you treat fhe deficiency, symptoms like speech, brain fog, social problems etc subside.
Of course that is only true if they actually have the antibodies

[Anonymous]

My child still continues to improve on Leucovorin. Try pure pediatrics Katie McDonald np.

[Anonymous]

I’m PP above and just wanted to add my child has had vaccines and I’m as blue a dem as it gets. Care is care and I don’t think you’re wrong for trying to help your child feel better.

[Anonymous]

Anonymous wrote:I’m PP above and just wanted to add my child has had vaccines and I’m as blue a dem as it gets. Care is care and I don’t think you’re wrong for trying to help your child feel better.

My child is also on leucovorin with a positive FRAT test. Ive been wildly surprised by how many autism moms have failed to get their kids tested for this. About 50% think its big government chem trails type stuff and the other half think it's crunchy mom hoodoo.
Not a single doctor had scoffed at it, though.

[Anonymous]

Dumb question, but why can’t you just give high doses of methylfolate (with a doctor’s oversight)?

[Anonymous]

Anonymous wrote:Dumb question, but why can’t you just give high doses of methylfolate (with a doctor’s oversight)?

Not a dumb question, at all..the main differences is between the two are that folinic acid is used earlier in "the folate cycle" and and methyfolate is used later so the body can convert folinic acid into different types of folate (like , but not limited to, methylfolate) but methylfolate cant do the same. So folinic acid is also used for dna synthesis and repair but methylfolate isnt

[Anonymous]

Anonymous wrote:

Anonymous wrote:Dumb question, but why can’t you just give high doses of methylfolate (with a doctor’s oversight)?

Not a dumb question, at all..the main differences is between the two are that folinic acid is used earlier in "the folate cycle" and and methyfolate is used later so the body can convert folinic acid into different types of folate (like , but not limited to, methylfolate) but methylfolate cant do the same. So folinic acid is also used for dna synthesis and repair but methylfolate isnt

I believe there is also a concern with overmethylation. Targeting the reduced folate pathway required high doses because its just not efficient and doesn't pass much folate. You need to use higher doses ans high doses of methylfolate have many more potential side effects

[Anonymous]

I'm not the PP, but I found the explanation concerning the difference between leucovorin and methylfolate to be very helpful. I'm interested in learning more. Any resources?

[Anonymous]

Thank you for that explanation. Another question, how bad is the hyperactivity side effect for kids who already have ADHD? Very nervous about trying to power through that while waiting for some improvement in ASD symptoms.

[Anonymous]

Anonymous wrote:I'm not the PP, but I found the explanation concerning the difference between leucovorin and methylfolate to be very helpful. I'm interested in learning more. Any resources?

Tons!
If youre interested in the science side of it, Dr. E Quadros at SUNY downstate is rhe microbiologist/researcher /pioneer who discovered Cerebral Folate Deficiency and its cause folate deficiency caused by auto antibodies. He has published numerous studies and has been a guest of many interviews
Search YouTube for Quadros CFD autism and you will find some talks.

Richard Frye is the neurologists who put 2 and 2 together ans noticed that a ton of people with CFD are actually autistic, and is one of the researchers who found in their sample that over 70% of autistic people have CFD. He has a book called the Folate Fix but also is an author of journal submissions a guest of interviews etc. He also has his own website with info.. you can Google Richard Frye, autism and find if

The maker of the test for the antibodies has information on their website fratnow.com

If you want to hear from parents who's kids are taking it, there is a Facebook group called cerebral folate deficiency. You can ask questions or search through older posts. There is an adult member who was one of fhe first children to be treated with leucovorin although he posts very rarely.

I