March 14, 2025
Parents say that son with autism was non-verbal to try an off-label medicine that treats chemo side effects

Parents say that son with autism was non-verbal to try an off-label medicine that treats chemo side effects

Caroline Connor’s worries about the development of her son Mason started around his first birthday when she noticed that he didn’t speak or used words. Their pediatrician did not seem to worry, but the speech delay continued to exist. After 2 and a half, Mason was diagnosed with autism.

The Connors went on a mission, looking for everything that would help.

“We have just started researching. And then my husband came across Joe Dr. Frye in a study he did,” said Caroline.

Dr. Richard Frye, a children’s neurologist, is one of the many doctors who are looking for treatments that can help children with autism. He studies Leucovorine, a cheap, generic medicine that is derived from folic acid, also known as vitamin B9. It is currently prescribed to illuminate side effects of cancer chemotherapy.

“It can really have a substantial impact on a very good percentage of children with autism,” Frye said.

The theory behind the use of the drug for autism postulates that some children have a blockade in the transport of folic acid in the brain that may contribute to some of the neurological problems associated with the condition. Leucovorin bypasses that blockade and can help some autistic children improve their ability to speak.

The first words of Mason Connor came only three days after he started taking Leucovorin at the age of 3, his parents say.

Doctors can currently only prescribe the drug for the autism off label, which means that the re-use of a medicine that has been approved for one condition to treat another.

“We have done science, and the next step is that we want to get more financing, so that we can actually approve the FDA,” Frye said.

But there is one big problem.

“Leucovorin is an old medicine and you can get it for a very low price. So nobody will earn a lot of money from it. So there is no reason for them to invest,” Frye said.

An estimated 20-30% of all regulations in the US are off-label, according to non-profit every remedy. There are more than 14,000 known human diseases without drugs approved by the FDA to treat them.

Dr. David Fajgenbaum Says that he “literally lives on a reused medicine today” after a rare cancer -like disease was made with him that almost killed him. His research into his illness led to a drug intended for another condition.

“It is heartbreaking to think about medicines on pharmacy board, while someone suffers from a disease,” said Fajgenbaum.

His non -profit, every remedy, uses AI to search available medical data about diseases and treatments to discover potential similarities.

“I think our system is simply poor and there is a big gap where pharmaceutical companies are great in developing new drugs for new diseases, and we as a system are really bad in looking for new diseases for old drugs,” Fajgenbaum said .

Mason is now 5 years old, and the plan is that he will start mainstream kindergarten in the fall – helped to a new path through an old medicine.

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