There have been times in the eight years since Judah Stampley was diagnosed with autism disorder that he has been on up to 12 prescription medications at once.
The combination of pills seem to have done more harm than good, and by the time Judah turned 15, his mother says, he was diagnosed with both Type 2 diabetes and with liver damage.
“The medications are not working, and we have never had significant progress,” Monica Stampley said. “Nothing can be worse than it is now.”
That’s why Stampley, who lives in Bossier City, and some other parents in similar circumstances celebrated when Louisiana legislators approved a law that made medical marijuana accessible to patients living with severe autism, creating an alternative to traditional prescription medicines.
While the medical marijuana program still has months to go before product becomes available and dispensaries open, these parents are already facing a huge hurdle to care: Many of them have found few pediatricians willing or able to recommend medical marijuana for pediatric patients with autism in Louisiana.
One of the few places parents can go hasn’t even opened yet.
Kathryn Thomas, a counselor licensed in both Louisiana and Texas, is working with a group of five physicians to open a medical marijuana clinic in Shreveport. Three of the physicians have been approved to recommend medical marijuana by the Louisiana State Board of Medical Examiners, while the other two licenses are pending. The group has committed to working with pediatric patients although Thomas said their clinic in Shreveport, called the Healing Clinics, likely won’t open until September at the earliest.
That’s around the time the LSU Ag Center, one of two approved medical marijuana growers in the state, have said they will have product available for the state’s nine dispensaries. The second grower, the Southern Ag Center, has said they won’t have product available until February 2019.
Thomas said the group is pre-registering patients and they have had an overwhelming number of requests from parents of children with severe autism.
“So much effort went into getting these laws passed and get to the point where it’s approved, these families are now hitting a wall,” she said. “At the end of the day we want to make sure nothing is standing in the way of potential treatment.”
Even as parents applauded the approval of autism as a qualifying condition for medical marijuana, they knew gaining access would be problematic. The original bill, which was authored by Rep. Rodney Lyons, D-Jefferson Parish, was changed to address concerns from the Louisiana Chapter of the American Academy of Pediatrics (AAP) during the legislative process.
John Vanchiere, a pediatrician and professor at LSU Health Shreveport speaking for the AAP, testified against the bill, arguing there is a lack of research available to show the benefits medical marijuana would have for young patients with severe autism. The AAP supported the bill after it was amended to say parents would have to first consult with a pediatric subspecialist before going to a doctor licensed to recommend medical marijuana.
The amendment was intended to protect the safety of the pediatric patient and make sure that all medical options had been evaluated before the parent considered medical marijuana. But some parents say it has created an access problem.
Currently, the Louisiana State Board of Medical Examiners lists 27 doctors who have either applied or been approved to recommend medical marijuana. None of them are pediatricians. Of the 15 who are licensed, none are pediatric subspecialists.
Judah Stampley sees five different specialists including a pediatric gastroenterologist, an endocrinologist, a psychiatrist and a pediatrician. His mom has talked to the latter two about looking into medical marijuana as an alternative to some of his current medication.
“They told me they didn’t know enough about it to be able to recommend it,” she said.
But Stampley urgently needs to find something that can help Judah: He exhibits some of the more extreme behavioral patterns that can come with autism disorder, such as extreme agression and self-harming behavior.
His mom described the teenager as “Andre the Giant” while testifying in favor of the law. Jonah is 6 feet, 2 inches tall and weighs 300 pounds, and because of his history of violent outbursts he is considered too dangerous and unpredictable to go back to school this fall.
Stampley’s other son, 13-year-old Jonah, also has autism disorder but is not as severe as his brother.
Another mother, Chloe Doublet, also has a son who is severely autistic. Joseph, 5, is non-verbal, she said, and he self-injures, repeatedly slapping his own face.
Because Joseph cannot communicate how he is feeling, Doublet said she constantly watches him for behavioral changes.
She has noticed he will sometimes appear to stare out into space, a symptom of a condition called absence seizures. On Thursday (July 12), Joseph was scheduled to have an MRI to determine the cause. If he is diagnosed with seizures, Doublet said it will at least open an alternate route to access medical marijuana for her son. Seizure disorders are another qualifying medical condition for medical marijuana but do not carry the same restrictions as autism for pediatric patients.
“I’ve tried every option–why not this?” she said. “But what I’m seeing is that doctors are still too nervous to help with this.”
Doublet said she has discussed with Joseph’s geneticist the possibility of using medical marijuana to treat some of her son’s extreme behavior. The doctor is not against the idea, she said, but his employer does not allow him to sign up to recommend medical marijuana.
She tried reaching out to Dr. Victor Chou in Baton Rouge, one of the 15 doctors approved to recommend medical marijuana. He is not taking pediatric patients, she said.
Chou confirmed this, saying that working with pediatric patients brings legal complications he is not ready to tackle.
“An adult patient can speak for themselves, a pediatric patient cannot,” he said. “The language of the law right now is too broad and there are legal risks that come with working with a pediatric population that I have to consider.”
Maria Clark writes about immigration, health, doctors, patients and health care in Louisiana for NOLA.com | The Times Picayune and NOLA Mundo. Reach her at firstname.lastname@example.org or 504.258.5306. Or follow her on Twitter at @MariaPClark1 .