Pubdate: Thu, 30 Apr 2015
Source: San Diego Union Tribune (CA)
Copyright: 2015 Union-Tribune Publishing Co.
Contact:  http://www.utsandiego.com/
Details: http://www.mapinc.org/media/386
Note: Seldom prints LTEs from outside it's circulation area.
Author: J. Harry Jones

FOR BABY SADIE, POT MEDS MAKE BIG DIFFERENCE, FAMILY SAYS

Fewer than 60 cases have been diagnosed since '75; only medical pot 
oil has slowed seizures, parents say

RAMONA - Sadie Higuera, not quite 2, has a rare and terminal genetic 
disorder that affects every cell in her body. At 8 months old she was 
suffering roughly 300 grand mal seizures a day, no matter what 
medications doctors prescribed, her parents said.

For the past year, however, those seizures have dropped to three or 
four a week - an astounding transformation that her dad, Brian 
Higuera, credits to medical marijuana oil.

Medical marijuana has its skeptics, and researchers warn that the 
long-term effects - and potential side effects - of the drug have not 
been studied fully.

But the Higuera family said the benefits for their daughter have been 
undeniable.

Sadie has Schinzel-Giedion Syndrome, a condition so rare that there 
have been fewer than 60 cases diagnosed worldwide since 1975. The 
syndrome causes severe retardation, horrible kidney problems and 
myriad other issues. Seizures can be relentless.

"You can't really do much but sit and watch and hope it stops," said 
Brian Higuera, a plant engineer at Qualcomm. He and his wife, 
Damaris, live in San Diego Country Estates in southern Ramona with 
Sadie and two other healthy daughters, Dina, 5 and Sophie, 3.

Nobody knows what causes Schinzel-Giedion. Sadie spent the first 2 
1/2 months of her life in the hospital after being born with numerous 
skeletal anomalies and other problems, and without critical neural 
fibers in the brain that connect the left and right cerebral hemispheres.

Doctors didn't know what had led to her condition. When she was 
finally discharged, the Higueras boarded a plane bound for the Mayo 
Clinic in Minnesota, "because we didn't have any answers about what 
her diagnosis was," said her father.

Doctors there identified Sadie's disorder as Schinzel-Giedion and 
gave her less than a year to live, her parents said.

"While we were at the clinic she had her first grand mal seizure," 
Higuera said. "From there it got seriously worse fast."

Over the next six months, her family said, doctors prescribed six 
types of anti-seizure medications and steroids to try to control her 
systems. Sadie's condition only grew worse, her parents said. The 
seizures continued, and tumors grew in her body.

"She was intubated all the time," her mother said. "She didn't open 
her eyes. She was having seizures all the time and yet was sedated 
all the time."

None of the specialists had solutions, Brian Higuera said. The 
steroids were making Sadie's body shut down and bloat. Doctors told 
the family they could put her on a different medicine to ease her 
pain, Higuera said, but warned it would probably kill her within a 
couple of months.

"We were in shock," he said. "What do you mean we don't have any more 
options for our baby?"

When Sadie was about 9 months old, the family was running out of 
options, and Brian began researching medical marijuana. That night he 
stayed up until 2 a.m. on the Internet and the next morning started 
calling around seeking a doctor who would help. Several medical 
offices hung up on him after hearing he was looking for a marijuana 
prescription for a 9-month-old girl.

"I don't think they believed me," he said.

He eventually found CentricWellness in San Diego, a holistic and 
alternative healing clinic that gave him a prescription for a medical 
marijuana oil. Sadie's mother was so nervous that she had to leave 
the house the first time Higuera placed two drops of the medicine 
into their daughter's mouth.

"After about 10 minutes I noticed her eyes weren't twitching," he 
said. "I was like, 'Oh my God, are you really focused on me?' She was 
actually looking at me, and her arms weren't twitching."

When Damaris came home she took one look at Sadie and started to cry.

"My baby was back," she said. "She was swinging on the swing, her 
eyes were open. I was talking to her and she was pulling me. She was 
squeezing my finger."

Sadie is fed and receives her medication - a product called Real 
Scientific Hemp Oil, made by Poway-based HempMeds - through a tube in 
her stomach. The oil contains very low levels of THC - the compound 
in marijuana that produces its psychotropic high - and high levels of 
cannabidiol, a chemical that some studies have shown to produce 
positive effects on certain illnesses.

Dr. Mark Rabe, of Centric Wellness, said in Sadie's case, the medical 
marijuana oil has been lifesaving.

"While on multiple pharmaceutical drugs, Sadie was getting hundreds 
of seizures per week and was having dangerous side effects. Her 
condition was deteriorating," Rabe said. "Now off the drugs - and 
with treatment that is high in the non-psychoactive cannabinoid - 
Sadie is almost seizure-free."

"She is also much more alert and responsive, and she has achieved 
developmental milestones that were previously thought not possible," 
Rabe added. "On top of that, she is having no side effects from her 
herbal-based treatment."

Sadie now coos like an infant, when before she barely made any noise, 
her father said.

"It's a quality of life thing," he said.

There is still resistance in the United States to marijuana and 
hemp-based medication, but the tide is turning as research continues 
and legislation is proposed, said HempMeds spokesman Andrew Hard.

"To me this should be a national health story," Hard said. "There is 
a stigma and opposition to this. But out there, through all the BS, 
you have Sadie and (other) children. You have these parents who have 
been through this and have their stories."

Rabe said doctors and scientists don't know exactly how the 
cannabinoid components of the marijuana plant make seizures go away.

"As seen in cases like Sadie's, though, the end-results are often 
quite remarkable," he said.

The drug is very expensive - between $1,200 and $1,400 a month - and 
isn't covered by insurance because it isn't recognized as medicine by 
the Federal Drug Administration.

Nevertheless, "it's worth every penny to us," said Higuera, who has 
become a medical marijuana advocate.

He said he is often put into contact with other parents seeking help 
for epileptic children and in some cases children with autism. "After 
what's happened to us, how could I not be an advocate?"
- ---
MAP posted-by: Jay Bergstrom