Leucovorin now approved by FDA--will providers prescribe to ASD kids?
![[Post New]](/jforum/templates/default/images/icon_minipost_new.gif){kind=icon}
Anonymous
| A good summary of the research: https://www.youtube.com/watch?v=RpV23RJzqnU |
Anonymous
No, that is a YouTube video by a non-MD who calls herself a “Dr.” Exactly the wrong place to look. |
Anonymous
|
The AP has a good summary here: https://apnews.com/article/autism-drug-leucovorin-trump-kennedy-d2b36faef3c4fc1f85e9fa9f958ad6c6
20 years ago researchers theorized low levels of folate in the brain caused by antibodies blocking its absorption could be a cause of autism in some people. But then a study showed non-autistic siblings also had the low folate levels so that theory was kind of abandoned. Then in 2018 Frye published a study of 48 children showing those that took leucovorin did better than those that didn't. Since then he has had trouble getting funding to do more research on this. Outside of the US 4 other small studies with different methodologies have also shown a benefit. This year Frye approached the Trump administration hoping to test a new proprietary version of the drug. To Frye's surprise the FDA just approved the use of the existing drug for autism. Seems like this really does need to be studied more. The FDA approval is just a political move to make it seem like they are doing something when it is not actually meaningful. |
Anonymous
She is a chemist PhD, also a Doctor. |
Anonymous
She’s a CHEMIST and selling herself as proving autism services? even worst. I thought maybe she was a PhD psychologist. |
Anonymous
I’m the PP who said I was going to give it a try. To me, it’s unfortunate that the researcher is pushing for a proprietary version of what is essentially a generic drug—it feels off that he’s trying to monetize something that’s already accessible. No wonder he was surprised by the FDA approval; his approach seems to hinge on having more time to show results with his formula. That said, I still think the existing RCTs are solid enough to suggest a real benefit, especially given the low risk of adverse effects compared to the potential upside. For that reason, I believe it’s worth trying for my child. |
Anonymous
Lord. quacks all the way down. |
Anonymous
It kind of makes sense... Private companies/investors unfortunately aren't going to fund a large trial on a cheap drug without patent protection. |
Anonymous
Unethical, perhaps. But if switching up a drug to regain patent protection makes someone a quack, then you're going to have a problem with all of the drug companies. |
Anonymous
Leucovorin, which is what Dr Frye prescribes, is an existing, long out of patent drug that is dirt cheap. You have your facts confused. GlaxoSmithKline is repackaging their version of it into wellcovorin. I doubt Dr. Frye owns GlaxoSmithKline. |
Anonymous
PP is referencing the facts stated in this AP article https://apnews.com/article/autism-drug-leucovorin-trump-kennedy-d2b36faef3c4fc1f85e9fa9f958ad6c6 It says Frye was hoping to create a drug company to sell a proprietary version of leucovorin and had discussed testing such a drug with the FDA. The Monday announcement that the FDA is approving the original drug for autism was apparently a surprise to Frye. |
Anonymous
|
There are so many great stories about how leucovorin is changing lives. Here is one i found recently
I rarely share in settings like this because my son is 31 and deserves his privacy. BUT…. I see so much misinformation, much of which is coming from seriously uninformed medical providers that really should know better! Seeing people struggle to access appropriate care is heartbreaking. Luecovorin is an incredibly effective treatment for many people with autism! This is not some kind of political ploy or newfangled approach. The research is real as are the long term, proven results. MY SON STARTED TAKING LUECOVORIN 13 YEARS AGO. This is not a new off label use, it’s something that’s been safely and effectively used in the autism and Mito communities for over a decade! Although my son is still considered Level 3, he barely meets the standard now. He has confirmed CFD and Mitochondrial myopathy and was diagnosed with ASD as a preschooler. Although not a cure, Leucovorin has been life changing for him! Not only has he had a significant decrease in behaviors including almost zero shrieking and a complete elimination of aggression but he is also far more verbal. His seizures are significantly reduced as well. Without his Leucovorin he would not be able to live the quality of life he does now. It’s been truly life changing for our entire family! It is my opinion that all children should be tested for folate deficiency upon a diagnosis of autism and treated with prescription strength Luecovorin when appropriate. I truly believe there is more than one cause of autism but I also believe CFD is likely an undiagnosed cause for a significant number of people. That needs to and can change. I pray this newly available knowledge brings true lasting change to the autism community. It’s much overdue! |
Anonymous
|
I saw one that is so funny and cute!!!!
-----------------### Week 1: Luecovorin journey with Miguel. Boe and I have been reading some research done on autistic people and a prescription vitamin called Luecovorin. They have been researching it for about eleven years, and of course, it’s still not “recommended” for use with autism. So, after watching a few families that were trying this document their journey on a few social media sites, Boe and I decided to try it with Miguel on a very low dosage at first to see if he would have a reaction to it or be able to take it. Now, he is only on 5 ml once a day. He had a bit of diarrhea the first day, not too bad, but was fine the next day. He started it on Friday, August 29th. The next day, he and I went to Lawton, and I was taken aback at how much he initiated deeper conversations that were not part of his hyperfocus. Then, in the fertilizer section of a store, he loudly asked, “Who farted?” Lol. I was tickled at the neurotypical behavior. On Sunday, day 3, he initiated conversations with people at a family function that he had barely ever said more than yes or no to. Throughout the next week, we noticed things like his vocal stimming was less and more melodic than normal. He and Lucas were having discussions about and playing games together. He answered the phone to me calling him by singing “Hello darkness, my old friend, I’ve come to talk to you again!” Instead of hello. When jokingly telling him to drive her car, my niece gave him her keys, and he said, “Ok,” and went to try and get into the car and was going to attempt to drive. When she asked him if he was really going to do it, he smirked and said, “I guess you will never know!” Then giggled back to the house. I asked him to get the trash out of my car, and he cleaned the whole thing out! Wk 2 - has started with little things like jumping to smack things like all of the young teen boys do and randomly grabbing his aunties hand to walk with her and small signs of random affection Cant wait to see what happens when his dosage is raised Also his teacher said he Engaging in conversation with his classmates andnot mumbling and walking off!!! This is HUGE! These are all things he has done in a WEEK on a prescription VITAMIN!!!! He has two more weeks, and then we will up his dosage under the doctor's supervision, and I am so excited to see what (if any) changes and surprises are in store!! #luecovorin #autismluecovorinn |
Anonymous
|
To the poster above, how old was your son when you started tx with leucovorin? I’m the PP. DS was 11. They’ve apparently seen improvement even in 40+ old adults but earlier intervention better. |
Anonymous
Who is “they”? |