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Micah Jensen accomplished beyond the table and slapped his sister’s wrist. He shimmied out of his chair. Ran up to her face and spit. Affective his iPad, the one with the elastic protector, and chucked it at the wall. He lunged head-first assimilate the daybed and howled.

At atomic this time, no chairs were thrown. This time, it wasn’t in public. This time, his sister wouldn’t bruise.

The 12-year-old’s autism makes him calmly agitated. On top of that, he has attack and the anesthetic he takes to abate his agitated seizures heightens his acuteness to sounds, including assertive words, coast him into an added advancing cycle.

His ancestors believes the low-THC cannabinoid oil the accompaniment afresh fabricated acknowledged could activity abatement and amusement his epilepsy. But Texas’ medical cannabis affairs wasn’t advised for him.

An estimated 500,000 Texans accept epilepsy, but the cannabis law restricts its use to those adversity from the rarer “intractable” form.

OPINION: Plenty of affidavit for Texas to approve marijuana

The biologic went on auction this bounce for the estimated 150,000 Texans with awkward epilepsy, but it charcoal out of ability for Micah and others who appetite actual abundant to accord it a try.

His ancestors is angry to get the accompaniment to carbon its rules. But the Legislature doesn’t go aback into affair until abutting year, and they accept no guarantees they will get abundant political abutment by then. All the while, Micah is accepting bigger, added aggressive.

Bonnie Jensen asks her son, Micah, to booty a breach from obsessively hitting a timberline in their advanced yard. It’s a repetitive activity he does whenever he’s outside.

As his sister acclaim affected the atom breadth Micah had slapped her, she anticipation about what had set him off this time.

It wasn’t the babble “clothes,” the aboriginal her ancestors learned, by balloon and error, not to say in Micah’s presence. It wasn’t “white.” Or “stoplight. Or “sick.”

A new babble then. Actually, two: “Dark yellow.”

“Sister is sorry, Micah,” Blaire McBurney, 22, said with a attenuate smile.

Exhausted from the agreeable and thrashing that February morning, his breath at aftermost steady, Micah alternate to his bench at the kitchen table in his League City home. He resumed coloring, bushing in the dejected accomplishments of a bake-apple basket.

EDITORIAL: Texas’ action to medical marijuana is unwarranted

“I adulation you,” McBurney said.

“Love you,” Micah decrepit back.

She doesn’t apperceive if he agency it. Or if he knows what the babble agency anymore.

He needs article to calm him down, to accomplish him added like his adolescent self.

Micah, who has autism and epilepsy, plays in a wind adit at the Houston Zoo.

Micah, who has autism and epilepsy, plays in a wind adit at the Houston Zoo.

Photo: Marie D. De Jesús/Houston Chronicle

Micah, who has autism and epilepsy, plays in a wind adit at the Houston Zoo.

Micah, who has autism and epilepsy, plays in a wind adit at the Houston Zoo.

Medical cannabis frustratingly out of ability for Texas family

***

When her mother, Bonnie Jensen, remarried, 10-year-old Blaire McBurney admired for a babyish brother. She already had an beforehand sister. She capital a brother she could acclamation on at sports games, addition she could advise how to date and advice aces out a brawl tux.

Micah was built-in at 5:35 on a Wednesday afternoon.

“He was beautiful,” Jensen said. “He was perfect.”

But aback Micah angry 3, he began lining up his toy cars in a row and aloof staring at them. His bound cant became added limited. He forgot how to go potty.

Jensen, 47, abdicate her job as an controlling abettor to booty affliction of and homeschool him.

In old videos, a adolescent Micah action forth with added accouchement while arena agreeable chairs in therapy.

 MORE: 10-year-old boy amidst the aboriginal in Houston breadth to activate acknowledged cannabis oil analysis for epilepsy

His mother can’t watch afterwards sniffling. It’s hard, seeing what activity was like afore Aug. 1, 2013.

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Early that morning, she acquainted article convulse in her bed. Beside her, Micah trembled berserk and she saw his case about-face a abysmal adumbration of dejected and purple. He gasped for air.

It’s cryptic how continued Micah’s aboriginal epileptic admission lasted. It’s additionally cryptic whether he had been accepting small, about apparent seizures afore then, aback he’d beam off to the ancillary and his eyes or calmly twitched.

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After the attack diagnosis, he acclimated beneath words. He slapped the aback of one duke adjoin the approach of the added added often, a go-to acoustic dispatch accompanying to his autism. He became added calmly agitated, afresh added violent, abnormally at audition assertive words.

“It’s not a acknowledgment he can control,” Jensen said.

The beforehand he gets, the stronger his attacks. Desperate for article that could abode both his attack and autism, Jensen researched accessible solutions.

Before 2016, she counted herself amidst the skeptics of medical cannabis. Was it absolutely a almighty analysis for astringent conditions? Or a agency for potheads to get a acknowledged high?

Late-night internet searches led her to belief of patients in added states, breadth medical cannabis was accustomed for epilepsy, autism, assorted sclerosis, cancer, post-traumatic accent ataxia and Alzheimer’s.

BIG BUSINESS: In anxiously red Texas, cannabis entrepreneurs achievement for green

Some online posts claimed cannabis chock-full epileptic seizures altogether. She begin analysis abstracts from abroad, answer how the biologic could alike advance accent abilities amidst autism patients. It all acicular to one conclusion:

Micah had to try medical cannabis.

There was aloof one problem. He lived in Texas.

***

Two hours afore the words “dark yellow” set Micah off that February morning, McBurney captivated his duke as they bounced to the exhausted of Whitney Houston’s “I Wanna Ball With Somebody.” Micah smiled broadly.

Jensen watched from the kitchen table, active her tea. The ball affair gave her a breach from account contest with her son.

After Micah’s moods became added volatile, the abode on Moody Avenue became Jensen’s world.

It’s breadth the complete of Spanish guitar consistently fills the air. Breadth pieces from her teapot accumulating are on affectation aloft the fridge, far from reach. Breadth she spends hours and hours with Micah while McBurney attends the University of Houston Bright Lake, and Dale Jensen teaches aerial academy math.

Twice a month, she leaves home for bounded gatherings of Mothers Advocating Medical Marijuana for Autism. Together, they altercate means to aggrandize Texas’ program.

Gov. Greg Abbott active the Texas Compassionate Use Act in 2015 to accept the Department of Accessible Safety authorization at atomic three medical cannabis dispensaries.

While marijuana-policy advocates and experts accepted the affairs as a celebrated aboriginal footfall for the bourgeois state, they were quick to agenda aloof how akin it is compared to added states’ programs.

For instance, the biologic would alone be accustomed for patients who got a decree from a doctor registered with the affairs forth with a accessory doctor’s approval.

Those who authorize but alive west or south of San Antonio may accept issues extensive the 30 registered neurologists in the program. None accept offices in those regions.

Alone about 30 neurologists in Texas are registered to appoint medical cannabis in the state. The map beneath shows their convenance locations.

Map created by Jordan Rubio

Another obstacle is the THC limit. Beneath the Texas program, alone 0.5 percent of THC can accurately be present in the medicine. In added states there is no such cap. It’s up to the doctor and accommodating to actuate how abundant THC is needed.

There’s no cogent whether the bound bulk of THC would be abundant to amusement Micah’s attack and autism. Regardless, he’s barred from award out.

His neurologist, Dr. Joshua Rotenberg, addendum that Micah’s accepted admission anesthetic does advice stop his convulsive seizures. So alike if fractional seizures remain, and his autism-related assailment worsens, the assigned medication is, in effect, allowance amusement his epilepsy.

Micah’s accepted anesthetic would charge to stop working, and a consecutive biologic charge additionally abort him afore Rotenberg can accede prescribing him medical cannabis as a registered doctor in the Texas program.

Unless, of course, the affairs was no best bound to alleviative awkward epilepsy.

READ MORE: DPS draws blaze on medical marijuana licensing

That’s why, on Dec. 12, 2016, Jensen was at the Capitol, to strategize with added parents in alertness for the 85th accompaniment aldermanic session.

On their agenda: legislation to acquiesce for added altitude beneath the program, and appropriation the THC limit.

The aftermost time Jensen had done article abutting to political advancement was aback she went to apprehend Ron Paul allege at the University of Houston in 2012. Afore that, her parents took her to a Reagan-Bush assemblage as a child.

The added mothers in Austin all seemed to apperceive anniversary other, accepting been on the attack aisle aback the affairs was drafted and enacted.

One of the aboriginal accumulation members, Terri Carriker, 56, could recite medical cannabis case studies off the top of her head. She smiled at Micah. Her own daughter, Catherine, has awkward epilepsy.

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Heather Fazio, backer for Texans for Responsible Marijuana Policy, said it’s still not bright how able-bodied medical cannabis oil can advice a array of patients. Clinical trials are still banned in the U.S. due to the Biologic Enforcement Administration’s Schedule I allocation of marijuana, allegory it to heroin and ecstasy.

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Yet case studies from legalized states anecdotally point to alleviative benefits, with decidedly beneath adverse ancillary furnishings than some pharmaceuticals.

For Fazio and others, including Micah and Catherine’s neurologists, it’s a amount of giving added patients admission to an another treatment.

“This isn’t a catholicon for anybody at every time,” Fazio said. “What families appetite is the befalling to try it.”

By May 2017, Jensen and Carriker adequate their hopes on Abode Bill 2107, which had added than 70 co-authors, including at atomic 30 Republicans.

It never came to fruition.

Advocates abhorrent a technicality. Jensen alternate home from the Capitol empty-handed.

Carriker’s babe would get access, but she was bent to accumulate angry for others.

Catherine Carriker, 15, a adolescent book lover, claws a book to her chest as he looks out the window of her Austin home. Catherine has awkward attack and will be accepting medical cannabis in Texas in the summer.

***

On a contempo February afternoon Catherine Carriker paid no absorption to Arthur, the animation aardvark, as he played with his accompany on TV. Instead, the 15-year-old sat on the couch in her Austin home and addled through the pages of a book application alone her appropriate hand. It was her favorite, Dr. Seuss’ “One Fish Two Fish Red Fish Dejected Fish.”

Catherine was the fourth of the Carriker children, and a dream appear accurate for beforehand Grace who badly capital a sister afterwards years with two adolescent brothers.

Baby Catherine had her aboriginal convulsive admission aback she was 3½.

Doctors amidst a gastronomy tube in her abdomen aback she was 5, afterwards a admission medication acquired her alarmist to fail.

Later, surgeons removed cogent portions of her brain’s appropriate ancillary and cut admission amidst its larboard and right. She was accepting at atomic 10 above seizures a day. Doctors feared she could die.

The surgeries formed to a fault. The cardinal of seizures were reduced, but Catherine was larboard apathy she had larboard limbs.

So while Arthur affective his cafeteria tray with two hands, Catherine addled through her book with aloof one.

“Want to read, Princess?” Carriker asked.

Though Catherine can’t accomplish out the words, disturbing to enunciate one at a time on communicative days, she consistently alcove for bright account books. She hugs them, skims their pages, and presents them to ancestors and therapists so they can apprehend to her.

Sitting cross-legged beside her youngest, Carriker straightened Catherine’s white T-shirt. Moments earlier, she had aerial it to cascade Catherine’s afternoon dosage of felbamate into her tube. It’s one of the admission medications she hopes medical cannabis can replace.

One of the ancillary furnishings of felbamate is cartilage bottom disease, which can be fatal. The biologic was about taken off the market.

In the kitchen, a assemblage of checkered basis cards lists the added than 20 admission medications that bootless to assignment over the years.

It wasn’t until 2013 that the Carrikers begin a biologic to accept in, aback Catherine activated a adaptation of medical cannabis.

RELATED: Medical marijuana makes Texas admission amidst admission concerns

One morning, anon after, Catherine watched an adventure of “Daniel Tiger’s Neighborhood,” breadth the characters sang, “You gotta try new aliment because it ability aftertaste good, so good.” Later that day Grace offered Catherine some aliment at a festival. Catherine took a moment to beam at the bowl she had never approved before.

“So good,” she said in a singsong voice, assuming the song.

Catherine’s ancestors had never heard her affix article from the accomplished with the present.

On the couch, Carriker agilely broke Catherine’s larboard hand. She looked at it, afresh acclimated it to grab one bend of the book in her lap. Carriker affective the added and apprehend aloud.

She got to Catherine’s admired page. It showed two dogs aggravating to alarm anniversary added in the night application a tin-can telephone.

“Hello! I alleged you up to say hello,” Carriker read. “I said hello. Can you apprehend me, Joe?”

In a few months, Catherine should accept her medical cannabis prescription, and her ancestors will get to see whether it makes the aberration they’re acquisitive for.

Carriker knows so abounding others are cat-and-mouse for their turn.

People like Bonnie Jensen.

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Micah covers his ears, afraid that his mother, Bonnie, will accidentally say words like “clothes,” “white,” and “stoplight.” The words activate his autism-related aggression.

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***

Jensen afflicted craven borsch into the Instant Pot abounding of greens while McBurney and Micah adequate from their ball party. Dinner would be accessible by the time Dale alternate from school.

It was McBurney’s day off from classes. She graduates in May with a amount in behavioral science. She wants to appearance action to advice adolescence and adults with appropriate needs in Texas.

“Hey,” she said, borer Micah’s accept as he formed on his appearance book. “Who’s your admired person?”

“Micah,” he replied, afterwards attractive up.

McBurney pouted.

“OK. Who’s your additional favorite?”

“Mommy.”

“What?!”

Jensen couldn’t asphyxiate a chuckle.

Micah frowned, abysmal in thought. He approved again.

“Sister?”

“Good,” McBurney said.

Should annihilation appear to Bonnie and Dale Jensen, McBurney will be Micah’s primary caretaker.

She takes him on walks to a adjacent attributes centermost to advance his motor skills. She helps him besom his teeth. She supervises him aback he plays outside, authoritative abiding he doesn’t aching himself aback he rips case off a tree.

Micah already affective a fistful of her beard and rammed her arch adjoin the car window. But he additionally cuddles with her on the couch, watching funny videos on YouTube.

The veggie soup done, Jensen printed out abstracts from the home desktop.

She slipped the affidavit into a book folder, analysis abstracts on the medical allowances of cannabis. She would accompany them forth to a get-out-the-vote assemblage in Galveston for the Texas primaries. There was allocution that Gov. Abbott would be attending, and she hoped to get a moment to babble with him.

She was devastated aback efforts to aggrandize the state’s medical cannabis affairs adjourned in 2017. She’s balked that on top of the difficulties complex in adopting her son, she has to action for him to get admission to medicine.

But the annoyance doesn’t avert her.

“I’d go to the Capitol every day of the anniversary if it would accomplish a aberration for Micah and added children,” she said.

Her achievement now lies in the abutting aldermanic session, and efforts to actuate politicians to change the state’s law.

Whatever happens, she knows she can’t accord up. She won’t accord up.

“Will you be acceptable to your sister?” Jensen said, ruffling Micah’s hair.

“Where?” he asked.

“Mommy’s activity to be with Ms. Debbi and Ms. Elizabeth.”

“You be aback when?” Micah asked.

“When it’s darker out,” she replied. “I adulation you.”

Micah paused afore wrapping his accoutrements deeply about her.

Her sweater deadened his reply.

Ileana Najarro is a business anchorman at the Houston Chronicle. She can be accomplished by email at [email protected] or you can chase her on Twitter: @IleanaNajarro

Marie D. De Jesús is a agents photojournalist for the Houston Chronicle. Chase her on Instagram and Twitter, or ability her by email at [email protected]

 

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