Leucovorin/Folinic Acid

[Anonymous]

Anonymous wrote:

Anonymous wrote:Pp, are you seeing good results with leucovorin? What pharmacy has it? How old is your child? Are you also giving B12 or any other supplements with it? Did your pediatrician want additional bloodwork besides the FRAT like a CBC, folate levels?

Yes. He is high functioning so we saw improvement is his conversation skills- more talkative, less trailing off or one word answers. We also saw improvements in social communication like more expressive, better eye contact. Surprisingly we also see less rigidity like trying new foods or switching tasks. All around hes becoming a happier, easy going person.

We arent giving any other supplement. We checked his homocysteine, methylmalonic acid, b12 and did an iron panel while waiting for the frat test results. He's not deficient so there isnt need to supplement.

All pharmacies have it. We get ours from CVS.
Our child is young adult age.

can you share his doctor??

[Anonymous]

Anonymous wrote:NP here. My son started two months ago. He is 6yo. We started at 5mg twice a day for two-three weeks and then increased to 12.5mg twice a day for another two weeks and now are at 25mg twice a day which is the actual clinical dosage for his weight. We are seeing changes in his language already. More complex sentences and more talkative. I believe it’s working.

Did you happen to ever try OTC 5-methyltetrahydrofolate before Leucovorin?

[Anonymous]

No, we did not. Only leucovorin

[Anonymous]

Anonymous wrote:

Anonymous wrote:NP here. My son started two months ago. He is 6yo. We started at 5mg twice a day for two-three weeks and then increased to 12.5mg twice a day for another two weeks and now are at 25mg twice a day which is the actual clinical dosage for his weight. We are seeing changes in his language already. More complex sentences and more talkative. I believe it’s working.

Did you happen to ever try OTC 5-methyltetrahydrofolate before Leucovorin?

5mthfr is for the rare instances when you have very specific mthfr snp mutations that cause significant reduction in enzyme activity.

Folinic acid/leucovorin is for when you have the autoimmune triggered antibodies that attack your folate receptor alpha. This is far more common in autistic people but both the FRAT test for the antibodies and a mail away gene swab for methylation mthfr should be done in every single autistic person.

[Anonymous]

New poster here. My 6-yr-old started on 5 mg twice a day as of last week. No noticeable behavioral changes or side effects to date. We expect to up dose in coming weeks. I’ll post again in a few months.

Our (standard) pediatrician was also hesitant, but wrote the script on a paper pad so as to not to record it in his practice’s computer system. I’m sorry you’re running into hurdles. As a previous poster noted, lots of potential upside and very little risk at play. I feel like screaming from the rooftops — every impacted child should be getting screened! Imagine the potential compounding beneficial effects of a kid who gets Leucovorin at 18 months versus at 6, like my kid? For a select few, might be life-changing.

Also, just want to say big THANK YOU for the parents on this forum who shared so intelligently on this topic in recent months. I was able to follow your good advice, and get through the steps.

Hoping for the best for my kid, and everyone else’s. To the OP, do report back!

[Anonymous]

Started Leucovorin 12.5mg twice a day for a week in my 13yo. Just upped the dose to 25mg in the morning and 12.5mg in the late afternoon. No big difference- but maybe some subtle increase in stimming (which he really had pretty much stopped a year or so ago). However, he does seem to be joking around more, but not sure if it's due to meds or having lots of company over due to holidays. No side effects. He said he thinks it helped him - when I asked how, he said it cleared up his cold he got at school...so maybe a placebo effect!

[Anonymous]

Anonymous wrote:Started Leucovorin 12.5mg twice a day for a week in my 13yo. Just upped the dose to 25mg in the morning and 12.5mg in the late afternoon. No big difference- but maybe some subtle increase in stimming (which he really had pretty much stopped a year or so ago). However, he does seem to be joking around more, but not sure if it's due to meds or having lots of company over due to holidays. No side effects. He said he thinks it helped him - when I asked how, he said it cleared up his cold he got at school...so maybe a placebo effect!

What kind of verbal skills does he have as a baseline?

[Anonymous]

Why are doctors (mine included) so scared to prescribe a vitamin you'll pee out of it's too much? Seems like very little downside, if it doesn't work just stop.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Started Leucovorin 12.5mg twice a day for a week in my 13yo. Just upped the dose to 25mg in the morning and 12.5mg in the late afternoon. No big difference- but maybe some subtle increase in stimming (which he really had pretty much stopped a year or so ago). However, he does seem to be joking around more, but not sure if it's due to meds or having lots of company over due to holidays. No side effects. He said he thinks it helped him - when I asked how, he said it cleared up his cold he got at school...so maybe a placebo effect!

What kind of verbal skills does he have as a baseline?

Baseline verbal skills are that he is highly verbal for ASD. He is conversational but struggles with retelling a story, understanding sarcasm, higher-order verbal skills.

[Anonymous]

We tried the OTC methylfolate with no effect. I'm in an online group and several people have gotten leucovorin. Nobody has reported dramatic improvement, some think it might be a little helpful but hard to say. Wondering if it's worth pursuing.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Pp, are you seeing good results with leucovorin? What pharmacy has it? How old is your child? Are you also giving B12 or any other supplements with it? Did your pediatrician want additional bloodwork besides the FRAT like a CBC, folate levels?

Yes. He is high functioning so we saw improvement is his conversation skills- more talkative, less trailing off or one word answers. We also saw improvements in social communication like more expressive, better eye contact. Surprisingly we also see less rigidity like trying new foods or switching tasks. All around hes becoming a happier, easy going person.

We arent giving any other supplement. We checked his homocysteine, methylmalonic acid, b12 and did an iron panel while waiting for the frat test results. He's not deficient so there isnt need to supplement.

All pharmacies have it. We get ours from CVS.
Our child is young adult age.

What dosage are you using?

[Anonymous]

Anonymous wrote:We tried the OTC methylfolate with no effect. I'm in an online group and several people have gotten leucovorin. Nobody has reported dramatic improvement, some think it might be a little helpful but hard to say. Wondering if it's worth pursuing.

Its doubtful that youre at the correct dose with over the counter folinic acid. For example we dont see effect at 100 mg but see dramatic effects at 150 mg.

[Anonymous]

DS 13yo now up to 25mg twice daily and seeing more attention, more talkative (was already verbal), and no significant side effects. We are doing a compounded version that is pure folinic acid without fillers.