AAMC patient: James D.

THE SAM PROJECT: James D.

This is the story of the Sam Project, but probably not the last word.

I have a very large, teenage autistic son. James D. is extremely anxious most of the time. Over time, James developed frequent and unpredictable rages. These rages increased in intensity and frequency, encompassing property destruction, aggression, some SIBs, and a number of police visits. Big and pissed, size does matter! James reached the point of severe anxiety and explosive rage 24/7. Life with our son became close to impossible.

For myself, I spent a lot time locked behind a solid core door. Later I bought pepper spray and finally a stun gun. The pepper spray was completely ineffective. James never noticed it, he never even coughed. That is perhaps a good way to describe these rages, that pepper spray had no impact whatsoever.

One of my friends, also the mother of an autistic child, who calls me from time to time, later told me that my voice sounded so stressed and different. I did not sound like myself. One night, she called and said that she and her husband were driving over to see us for a few minutes. She gave me some cupcakes and told me to give one to James when life was tough, and if he needed it, give him another.

Snap your fingers, a miracle happened for us! No more rage, reduced anxiety, no constant deafening noise and no house rocking and rolling. Those cupcakes had marijuana baked into them. This marijuana was left over from a dying wolf dog named Sam. Sam was the family pet, suffering with a brain tumor. My friend eased her dying dog by putting marijuana into his food. The cupcakes were made with left overs after Sam's dying. So, really, Sam saved my son's life, and our family's life.

My son now uses 2 1/2 mg of Marinol up to four times a day, and one brownie up to four times a day. We try to keep the dose to a minimum, because many days he is able to get by on less medication. When he has not had enough medication we have Los Tormiento, a storm. We are able to recover now, but in the past this was not the case.

We are in the process of obtaining permission for medical marijuana use in our state. James has three doctors, two of them specialists, and a Ph.D. involved with his medication decisions, so we are not alone. We also have an attorney involved. However, with or without state sanction, this is a very difficult road to travel for old parents who are no longer able to locate a drug dealer! The cost of my son's medication is prohibitive. But when we run out, we remember why we are willing pay the price.

James D. has no discernible side effects from the marijuana, and that cannot be said about previous medications we have tried. Most of the drugs used for behavioral control with the developmentally disabled are riddled with side effects, whether an SSRI (luvox, celexa, paxil), or one of the anti-psychotic/tranquilizers (Haldol, Risperdal, Thorazine); sometimes Ritalin and blood pressure medications are added. Frequently a real cocktail of drugs is the only effective approach. Side effects are hair raising and heartbreaking. I know a mother who was told by her pediatrician to check and see that her son was still breathing every once in a while. My son lives with severe anxiety and a panic monster so vicious and so strong that when it attacks, all he can do is lash out at an invisible nemesis as it gradually drives him crazy. He doesn't understand. Only the most powerful drugs MAY have a chance of diminishing the attacks, if they don't kill him first.

So, my friend, our benefactor, who helped us at the worst possible time, tells me my voice is so different now, I laugh easily again. She says my husband and I seem to be more lighthearted together, too. When we are not afraid of the legal ramifications of our solution, we do indeed laugh at the irony of our situation. We cannot believe the twists and turns our lives have taken.

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More on the saga of the 8-year-old boy who uses marijuana, who was also featured in the recent "48 Hours" report:

May 31, 2002 -- Youth on marijuana pills needs fewer

Category: Local News
Created: 12:23:07 PM on 6/3/02
Publication: Mountain Democrat (Placerville, CA)
Publication Date: 5/31/02
Page and Section: 1 A
Body: By MEGAN MARSHACK Staff writer

The mother of the previously violent 8-year-old boy now using marijuana as a medical aid to ameliorate his rages is sweet-voiced and articulate in a telephone interview.

She emphasizes her son's use of cannabis, recommended by a physician, comes after years of trial and failure of conventional psychotropic medications, diet, holistic medicine, behavior modification and other therapies.

The mother, who is not being named for reasons of confidentiality, says she was working at the Rocklin school district as a teacher's aide when students in her class investigated the pros and cons of medical marijuana under Proposition 215, the Compassionate Use Act, approved by state voters in 1996.

In helping her students do research, she "stumbled on the idea" of a way to help her son.

"They knew he was in a residential home," she says. "Yeah," she quotes the students, "You've got to do this."

The boy had failed at placement at a special education school for conduct disorder and emotionally-disturbed children.

The mother quit her job in February 2001 and was being paid by Placer County for taking care of her son, along with social service workers, around the clock.

"By May 15, he was out of control. It was a horrible nightmare," she said.

"I'm not about breaking laws, I wanted to do the best for my child," she said.

The boy was facing a lock-down type of psychiatric placement.

She consulted the director of Wo/Men's Alliance for Medical Marijuana and an Oakland pediatrician who also had experience in the use of medical marijuana.

The doctor said, "What do you have to lose? It's far less toxic than any medication," according to the mother.

She said her son is the first documented case study for children using cannabis medicinally.

Initially, the boy ate portions of muffins that had been prepared with marijuana.

"Within half an hour, actually 35 minutes, of the first dose, it was a miracle," she said.

But the boy couldn't stand the taste, even when dressed up with whipped cream or sprinkles or other treats. So the boy's mother and grandmother began to pack his daily doses of marijuana in capsules.

"Another pill was nothing," the mother says after the boy's history of medication.

"We grind up the marijuana in a coffee grinder, sift it, put it on the skillet for an hour with butter and water to cook it, then we spread it out in a big lasagna type pan and bake it in the oven to dry it back out to a powder so that we can put it into capsules," according to the mother's Web site.

"Each pill contains 0.36 gram of marijuana," the mother said. Up until his first anniversary on the medication, the boy took three of them in the morning, two at 1 p.m. and three in the evening before bed, the mother said. That's a total of 2.88 grams per day. There are 28.5 grams to an ounce.

"Now he's down to one capsule before bed," the mother said.

When the mother remarried and moved to El Dorado County, her son's new school had to tell her they could not medicate the boy during the school day. She had to drive 26 miles round trip to deliver the boy's capsules which had to be administered off campus.

School staff did not meet the criteria to possess and dispense marijuana as primary caregivers under Prop. 215. State law forbids dispensing medication without a prescription. Physicians can only "recommend" marijuana -- not formally prescribe it. And, of course, marijuana remains illegal under federal law.

The Oakland physician who first recommended the marijuana comes to El Dorado County to examine the boy. But the mother wants to find a local pediatrician for regular medical checkups and emergencies.

The breakthrough day was May 21, 2001, a year ago. In the first six weeks, the mother said, "He's sleeping, no violence, no different than a normal kid." At 9 months old the child had "uncontrollable fits, rage, tantrums," the mother said. Later he was compulsive about food on his plate and his mother had to have plastic dishes because the boy would destroy them. Washing up could take from three to four hours.

"He couldn't get them clean enough," she said. In 1997 through 1998 the boy did not sleep more than two hours a night, she said, keeping her awake to watch him as well.

In 1999, the boy had three separate admissions to a psychiatric hospital.

"The doctor said she sanctioned no more medications, because they did not help him," the mother said.

She says the boy consistently hit, bit and kicked her.

A sadly typical story happened on Mother's Day, 1999.

"I had taken (the boy) to church right down the street. He was horrible. I went to the grocery store because I wanted to bake something for myself and I had to do a take-down in the store. The (shopping) cart went over and he took a big chunk out of my hand," she said.

This year on Mother's Day, she said the boy was grounded, but just "for 8-year-old stuff, for sassing. There's no violence in our home."

The mother said her blended family is very supportive of the marijuana treatment. "We all know some day it might quit working. We just live day to day," she said. As far as marijuana's illegality under federal law she said she would ask officials, "What would you do with him? He's living life. He's not a drugged-out child. What would you do with him?"

Megan Marshack can be contacted via e-mail at mmarshack@mtdemocrat.net

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