The Story of Joey Perez

May 17, 2011

Given the many chal­lenges involved in rais­ing an autis­tic child, par­ents are will­ing to try a vari­ety of poten­tial reme­dies, many of which are con­tro­ver­sial and unproven.

But one poten­tial treat­ment that has gained atten­tion recently is one that was con­tro­ver­sial well before its first men­tion in con­nec­tion with autism.

At first I did some research, and I found a doc­tor who actu­ally had a pro­to­col for med­ical mar­i­juana in chil­dren diag­nosed with autism,” Mieko Hester-Perez of Foun­tain Val­ley, Calif., told “Good Morn­ing America.”

Hester-Perez made her deci­sion to try giv­ing her 10-year-old son, Joey Perez, med­ical mar­i­juana after his weight had become dan­ger­ously low due to his unwill­ing­ness to eat. She said that at the time she began the approach, he weighed only 46 pounds.

You could see the bones in his chest. He was going to die,” she said.

The mar­i­juana bal­anced my son,” said Hester-Perez, not­ing that she has never used mar­i­juana her­self. “My son had self-injurious behav­iors. He was extremely aggres­sive, he would run out of our house… he was a dan­ger to him­self and others.”

But just hours after she gave him one of the pot-infused brown­ies, she said she could see a change — both in his appetite and demeanor.

Within hours, he requested foods we had never seen him eat before,” said Hester-Perez.

She added that her son used to take a cock­tail of med­ica­tions, three times every day, for his con­di­tion. He now takes only three, and he has a mar­i­juana brownie once every two or three days. He still can­not com­mu­ni­cate verbally.

I saved my son’s life, and mar­i­juana saved my son’s life… When a mother hears that her son is knock­ing on death’s door, you will do any­thing to save his life,” said Hester-Perez.

Allen St. Pierre, exec­u­tive direc­tor for the National Orga­ni­za­tion for the Reform of Mar­i­juana Laws, said that mar­i­juana for chil­dren is some­thing that draws con­cern even from par­ents within his advo­cacy organization.

While there have been some peo­ple within NORML’s ranks who remain put off by this, I think speaks to just how fear­ful some are [of mar­i­juana],” he said.

And this reac­tion remains out of pro­por­tion to the pos­si­ble risks from the drug, he said, not­ing that, just as some chil­dren are given doses of med­ical mar­i­juana in more reg­u­lated set­tings, chil­dren can be given con­trolled doses of strong drugs such as amphet­a­mines or opi­oids with­out draw­ing as much opposition.

They prob­a­bly wouldn’t raise an eye­brow,” St. Pierre said of par­ents’ responses, “but because reefer mad­ness has been so pro­found in the United States, that’s one of the only things that makes it notable.”

But some oppo­si­tion to this type of treat­ment is med­ical concern.

He is intox­i­cated. He’s stoned,” said Dr. Sharon Hirsch, a child psy­chi­a­trist at the Uni­ver­sity of Chicago. “It means that he’s under the influ­ence of a drug and may have an addic­tion. It can cause psy­chosis, may lead to schiz­o­phre­nia. [There’s] no evi­dence at all at this time and no rea­son to pre­scribe any kind of mar­i­juana for a child with autism.“
Pot and Consequences

Because of a lack of research on mar­i­juana and autism, the effect of actions like Hester-Perez’s are unclear.

The data on early expo­sure and long-term expo­sure in kids, at least one study sug­gests small decreases in IQ long term,” said Mitch Ear­ley­wine, a psy­chol­o­gist and asso­ciate pro­fes­sor at the Uni­ver­sity at Albany who has researched mar­i­juana and cur­rently serves on the advi­sory board for NORML.

My only con­cerns are based on those data of deviant brain devel­op­ment or loss of IQ points, but again, we’re talk­ing about some­one who is autis­tic, so I’m not sure how nuts to go about that,” he said.

Not­ing that he only infre­quently hears about par­ents using it for their children’s autism, Ear­ley­wine said, “My friends who are big in autism treat­ment, this is not reach­ing them at all. The news doesn’t reach them and they think lit­tle of this approach,” he said, explain­ing that many doc­tors who work with autis­tic chil­dren pre­fer to use behav­ioral ther­apy instead of phar­ma­ceu­ti­cal intervention.

I pre­fer to see peo­ple really go with the behav­ioral treat­ments as the first line,” he said. How­ever, he under­stands why a par­ent might choose to give a child mar­i­juana to treat autism symptoms.

The day to day life with an autis­tic kid is really dif­fi­cult to under­stand,” he said. “Hav­ing some kind of inter­ven­tion like this can mean the dif­fer­ent between someone’s going inpa­tient or not.”

Refer­ring to a Rhode Island mother who wrote about her expe­ri­ence with pot in the online mag­a­zine Dou­ble X, Ear­ley­wine said, “I hope other folks don’t give her too much trou­ble until they’ve walked a mile in her shoes.“
When There’s No Smoke

By giv­ing the mar­i­juana to the child in food, par­ents may avoid some of the neg­a­tive side effects of smok­ing, said Ear­ley­wine. And while mar­i­juana may be avail­able in pill form, he explained that that is prob­a­bly not an appeal­ing option.

For one thing, he explained, the phar­ma­ceu­ti­cal forms of THC — an active com­po­nent of mar­i­juana — avail­able may not have all the ben­e­fits that mar­i­juana itself does, and the pills can be expen­sive as a treat­ment, since they can range, Ear­ley­wine said, from $4 to $11 each, with a child need­ing three per day.

Mean­while, he said, it seems a child’s dose from grow­ing the drug in-home was prob­a­bly around $1 per day.

While some par­ents who have used mar­i­juana for autism may swear by it, it remains rare and unstud­ied, at least on any sig­nif­i­cant scale.

I’m not aware of any research on the effi­cacy of mar­i­juana on the treat­ment of autism,” said Stephen M. Edel­son, direc­tor of the Autism Research Insti­tute, which col­lects infor­ma­tion from par­ents on alter­na­tive treat­ments they try. “That doesn’t mean it doesn’t work, it just means there’s not sci­en­tific doc­u­men­ta­tion that it does work.”

We still hear reports from par­ents who have tried it. I can­not say that every­one who tries it sees a change,” he said.

As far as research, no there isn’t and I would think there should be,” said Edel­son. “That could be one of the few options to treat chil­dren who have these very severe behaviors.”

But while par­ents have tried a vari­ety of treat­ments for autism, the com­mon thread may be the calm­ing effects these treat­ments have, rather than any­thing about the treat­ment itself.

If med­ical mar­i­juana calms down some chil­dren with autism it may work in the same way that mas­sage or swing­ing ther­a­pies do. These things feel good and that could have a set­tling effect on kids that are prone to be hyper­ac­tive,” said Becky Estepp, mother of a child with autism and a spokes­woman for autism advo­cacy group Talk About Cur­ing Autism.
Mar­i­juana Research In America

St. Pierre said one of the pri­mary prob­lems with mar­i­juana research has been that gov­ern­ment fund­ing poli­cies have not allowed research into pos­si­ble med­ical ben­e­fits, only poten­tial harms. His state­ment appears sup­ported by a search of the data­base of clin­i­cal tri­als funded by the gov­ern­ment, show­ing tri­als of

One of the big con­cerns we’ve had for over 30 years is that the fed­eral gov­ern­ment has a series of skewed fund­ing pri­or­i­ties,” he said. “If the gov­ern­ment allowed researchers to move more naturally…we would see more stud­ies on cannabis and autism.”

[The National Insti­tute on Drug Abuse] would not fund a trial of mar­i­juana as a treat­ment of autism,” said Earleywine.

And he said that is unlikely to change even under a more lib­eral administration.

It’s a com­pet­i­tive time to get those research dol­lars,” said Ear­ley­wine. “I think it’s unlikely, even thought the atti­tudes are less conservative.”

Mother Gives Son Mar­i­juana to Treat His Autism

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