More evidence for folate malabsorption in Neurodivergent bodies

[Anonymous]

Anonymous wrote: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.

My ds had zero hyperactive effects but his adhd is much more inattentive than hyperactive. Please join the Facebook group "cerebral folate deficiency " and discuss with parents. I have seen many posts about this ans I know some members have given advice about adding "calming supports," but honestly haven't paid much attention to what those are since we didn't encounter it

[Anonymous]

If you have the time, this is a good explanation from Dr Quadros
https://youtu.be/3DruLBCFxFE?si=Rme3TUEBLHUR5C94

[Anonymous]

Has anyone tried the folinic acid sold by naturopath Lindsey Wells?

[Anonymous]

Anonymous wrote:Has anyone tried the folinic acid sold by naturopath Lindsey Wells?

No but we have tried the high dose folinic acid from spectrum awakening. It works well

[Anonymous]

Pp, thanks for the info. Did you start at a low dose and build up?

[Anonymous]

Anonymous wrote:Pp, thanks for the info. Did you start at a low dose and build up?

Started with 1/8 a teaspoon for a 12 year old. You might start lower if your child is little

[Anonymous]

I stumbled upon this thread and am wondering if someone can point me in a direction.

DS is 30 and was diagnosed as PANDAS at NIH at age 11 but didn't qualify for the study. He had his first of many episodes (strep induced) at age 6 and the last known strep caused outbreak was in his 20s. His debilitating OCD has made him unable to finish school or to work. He did exposure and response prevention therapy for a couple of years with prophylactic antibiotics, which carried him through high school, but in college he fell apart after a couple of strep episodes. He has refused further ERP treatment and any other therapy, which in any case has proven counterproductive as his (distorted) views of the psychologists just become part of his obsessive ruminations.

The FRAT test looks well worth looking into and something he might agree to do. Where could I find a doctor who might agree to do this testing for adult?

Honestly, we have just about given up. I have resigned myself to saving enough money to support him for life and my daughter has resigned herself to having responsibility for him once DH and I are gone.

Thanks for any help.

[Anonymous]

Anonymous wrote:I stumbled upon this thread and am wondering if someone can point me in a direction.

DS is 30 and was diagnosed as PANDAS at NIH at age 11 but didn't qualify for the study. He had his first of many episodes (strep induced) at age 6 and the last known strep caused outbreak was in his 20s. His debilitating OCD has made him unable to finish school or to work. He did exposure and response prevention therapy for a couple of years with prophylactic antibiotics, which carried him through high school, but in college he fell apart after a couple of strep episodes. He has refused further ERP treatment and any other therapy, which in any case has proven counterproductive as his (distorted) views of the psychologists just become part of his obsessive ruminations.

The FRAT test looks well worth looking into and something he might agree to do. Where could I find a doctor who might agree to do this testing for adult?

Honestly, we have just about given up. I have resigned myself to saving enough money to support him for life and my daughter has resigned herself to having responsibility for him once DH and I are gone.

Thanks for any help.

Not the pp but can you give your doctor some evidence of why it is worth ordering the test. I found this:

Could Folate Receptor Autoantibodies Be the Missing Link in PANS/PANDAS? | Philadelphia Integrative Psychiatry https://share.google/cOsCJXR1OUCsDSjOB

[Anonymous]

Anonymous wrote:I stumbled upon this thread and am wondering if someone can point me in a direction.

DS is 30 and was diagnosed as PANDAS at NIH at age 11 but didn't qualify for the study. He had his first of many episodes (strep induced) at age 6 and the last known strep caused outbreak was in his 20s. His debilitating OCD has made him unable to finish school or to work. He did exposure and response prevention therapy for a couple of years with prophylactic antibiotics, which carried him through high school, but in college he fell apart after a couple of strep episodes. He has refused further ERP treatment and any other therapy, which in any case has proven counterproductive as his (distorted) views of the psychologists just become part of his obsessive ruminations.

The FRAT test looks well worth looking into and something he might agree to do. Where could I find a doctor who might agree to do this testing for adult?

Honestly, we have just about given up. I have resigned myself to saving enough money to support him for life and my daughter has resigned herself to having responsibility for him once DH and I are gone.

Thanks for any help.

Our doctor has prescribed the frat test. Im not comfortable blasting their contact info on a message board but I do feel for you so I made an anonymous email where you can reach me and I will send it from there
[e-mail]

[Anonymous]

Anonymous wrote:I stumbled upon this thread and am wondering if someone can point me in a direction.

DS is 30 and was diagnosed as PANDAS at NIH at age 11 but didn't qualify for the study. He had his first of many episodes (strep induced) at age 6 and the last known strep caused outbreak was in his 20s. His debilitating OCD has made him unable to finish school or to work. He did exposure and response prevention therapy for a couple of years with prophylactic antibiotics, which carried him through high school, but in college he fell apart after a couple of strep episodes. He has refused further ERP treatment and any other therapy, which in any case has proven counterproductive as his (distorted) views of the psychologists just become part of his obsessive ruminations.

The FRAT test looks well worth looking into and something he might agree to do. Where could I find a doctor who might agree to do this testing for adult?

Honestly, we have just about given up. I have resigned myself to saving enough money to support him for life and my daughter has resigned herself to having responsibility for him once DH and I are gone.

Thanks for any help.

[Anonymous]

My DD started Leucorin a week ago and has developed terrible insomnia in the last week or so. Has anyone experienced this?

[Anonymous]

How do you test for MTHFR?

[Anonymous]

Anonymous wrote:My DD started Leucorin a week ago and has developed terrible insomnia in the last week or so. Has anyone experienced this?

No insomnia here. You should probably skip the night time dose until her body adjusts or add calming support. Ask your doctor. The cerebral deficiency Facebook group probably has .ore parents who might have experienced this

[Anonymous]

Anonymous wrote:

Anonymous wrote:My DD started Leucorin a week ago and has developed terrible insomnia in the last week or so. Has anyone experienced this?

No insomnia here. You should probably skip the night time dose until her body adjusts or add calming support. Ask your doctor. The cerebral deficiency Facebook group probably has .ore parents who might have experienced this

Well she also started Omeorazole for reflux at the same time - doctor thinks it’s more likely to be that!

[Anonymous]

How is folinic acid different from L-methyfolate? I thought the very most basic form was the latter?