Pubdate: Wed, 25 Apr 2018
Source: Times-Picayune, The (New Orleans, LA)
Copyright: 2018 The Times-Picayune
Author: Maria Clark


A car ride anywhere with Denise Young's 16-year-old son Seth can be
extremely dangerous.

Seth was diagnosed as a young child as having low-functioning autism,
a severe form of the disorder that makes him hypersensitive to sound
and light and which can trigger tantrum-like meltdowns.

"They call it a rage," Young said. "He has thrown punches in the back
of my seat, the back of my head (while driving)."

Medication hasn't worked, according to Young. One prescription only
made Seth's rages worse, she said. Another one caused excessive thirst
and hormonal imbalances.

"He is non-verbal, which makes him very frustrated. He can't
communicate how his medication is affecting him so we can only read
how he is feeling through his behavior," Young said. "It's an
emotional rollercoaster and it's not his fault."

So, like many Louisiana parents raising children with severe autism,
Young is tracking a bill in the state legislature authored by Rep.
Rodney Lyons that would allow licensed doctors to recommend medicinal
marijuana in cases of severe autism, once the state's nine
dispensaries open later this year. The medicine would be recommended
to patients who exhibit extreme behavior associated with autism,
including self-injuries, physical aggression and repetitive or
self-stimulatory behavior.

Advocates for medical marijuana believe a compound in the plant called
tetrahydrocannabinol (THC), which has shown benefits treating
seizures, gastrointestinal disorders and metabolic conditions, could
be used to treat similar symptoms in children with severe autism.

Autism spectrum disorder affects about 1 percent of children around
the world. The Centers for Disease Control and Prevention estimates
that one in 68 children in the U.S. has been identified as having ASD.

If the bill is approved, autism would be added to a list of conditions
that can be legally treated with medical marijuana in Louisiana.
Others include the gastrointestinal condition Crohn's Disease, pain
associated with HIV/AIDS, seizures, and muscular dystrophy.

There is a caveat: Children with autism under the age of 18 could only
be recommended medical marijuana by a pediatric subspecialist, like a
pediatric neurologist or a pediatric psychiatrist. The specialist
would need a permit to prescribe medical marijuana. Only eight doctors
in Louisiana have gotten permits to do so. Only one of them is a

Katelyn Ramsey Castleberry, spokesperson of Louisiana Mothers
Advocating Medical Marijuana for Autism (LAMAMMA), says the waiting
period to see a pediatric subspecialist can take months. She is on a
13-month waiting list to see a specialist in New Orleans for her two
boys Ramsey, 7, and Bodi, 9. Both sons were diagnosed with autism as

Bodi has high-functioning autism but has extreme anxiety and
difficulty interacting with other children. Ramsey is a non-verbal
sensory seeker, constantly on the lookout for extreme forms of
excitement. Ramsey has climbed to the roof of the family's home. There
were the times he has jumped into Lake Pontchartrain. Castleberry has
to be constantly vigilant to make sure he doesn't try to eat non-food
items. The condition disrupts his sleep, his moods and even his digestion.

"I think medical marijuana would make his quality of life better. I'm
not of the mind his autism will be stopped in its track, but he won't
suffer from a nervous system that is constantly on fire," she said.

If she has to wait 13 months to see a pediatric subspecialist in New
Orleans, she wonders what families in smaller towns around the state
are going to do.

"What are people in Shreveport, Monroe, Alexandria going to do?" she
said. "Not only do we have this mountain to climb to convince people
that this is a safe science, this provision could mean that hundreds
of families will be left out of care."

Tamra Williams lives in DeQuincy, a town about 45 minutes from Lake
Charles, where she used to take her 6-year-old son Kristopher to see a
pediatric psychiatrist. The doctor no longer takes their insurance,
and Williams has been unable to find a new psychiatrist.

Williams has looked for a pediatric autism specialist and said the
nearest doctor is a three-hour drive from home.

Kristopher was diagnosed as having high-functioning autism as a
toddler. At the time he was non-verbal.

"He can speak now at about a three-year-old level. He has come a long
way," said Williams, but has problems controlling his anger, for which
he is prescribed blood pressure medication. The medicine, however,
acts as a blood thinner which can slow his breathing, which is
particularly dangerous while he's sleeping.

"Most of the time, I stay awake making sure he's OK," Williams said.
"We really are hoping to at least be able to try a natural option for
my son."

Louisiana's chapter of the American Academy of Pediatrics petitioned
for the requirement that parents see a pediatric subspecialist to
access medical marijuana for children who suffer from severe autism.
The original language of the bill did not include the

The organization came out in opposition to the bill's original version
in late March, arguing that there isn't enough data to support the
effectiveness or safety of using medical marijuana to treat children
with autism.

"Requiring a subspecialist shouldn't be an obstacle to care. It is a
safety measure to protect our children from inappropriate access to
medication," said Dr. John Vanchiere, the director of Children's
Clinical Research Center with LSU Health in Shreveport.

He added that the association is concerned that, without this
requirement in place, people might be tempted to overprescribe even to
manage minor symptoms associated with autism.
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