Leucovorin/Folinic Acid
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Anonymous
| FRAT came back + so we are trying to get leucovorin prescription. Ped ordered test but seems very hesitant to write prescription as she says she has never prescribed it before in this setting. What dosage did those who used it for CFD/Autism start at? Anything we should monitor? Any lab work to be monitored? Ped said she needs to do more research before prescribing, but we are wanting to start ASAP as DS is already 13. |
Anonymous
| Did you do the online request for the frat test or is this something that providers can now just order through labcorp or similar? |
Anonymous
| I still had to have Ped request online but kit sent directly to me and had private phlebotomist draw the sample... |
Anonymous
| gosh a regular pediatrician ordered the test for you? I really am frustrated with what seems as only options the pricey no insurance doctors. Access to tests and interventions shouldn't be just for folks with money to burn. |
Anonymous
| When you say "ped" what do you mean? A developmental pediatrician or a regular pediatrician? |
Anonymous
| For those whose kids are on leucovorin, where do you obtain it? A regular pharmacy? |
Anonymous
| It's readily available from regular pharmacies and is pretty cheap. |
Anonymous
+1 mine won't do it |
Anonymous
New poster here. You need to go elsewhere. There are plenty of doctors who will prescribe the FRAT test and even more whonwill just try leucovorin because its a water soluble vitamin. There is almost zero downside and the upside is amazing. The longer you wait the more likely to have permanent effects of the vitamin deficiency in the brain. Please call around to other pediatricians and ask the nurse if this practice prescribes luecovorin for autism or suspected autism. You can not allow doctors to prevent your child from becoming healthy. Back to OP- Your doctor can easily find the prescription protocol through Dr Richard Frye's website. She should know that the child should begin at a lower dose and slowly move up to the ultimate target dose every 2 to 3 weeks. The worst side effect is that some times kids become hyper or agitated as the sheathing begins to repair itself and emotions become "bigger" but this wears off after a few weeks. Some kids become giddy and happier. |
Anonymous
| 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? |
Anonymous
| 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. |
Anonymous
| Pp, any side effects? Hyperactivity or irritability? |
Anonymous
| He was a bit hyperactive the first week of each increase. No other side effects! |
Anonymous
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. |
Anonymous
| Are there different formulations? Ones with cleaner ingredients? |