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Sam’s Story Using Medical Cannabis
to Treat Autism Spectrum Disorder
Return
Back To Main Medical Reports Page
Background on Sam
Sam is an eight-year-old male. He was diagnosed with
Pervasive Developmental Delay-
Not Otherwise Specified (PDD-NOS) when he was two
and one-half years old by a
pediatric psychiatrist at the M.I.N.D. Institute, UC
Davis Medical Center. He was
re-diagnosed at the M.I.N.D. Institute in October
of 2007 with Autism Spectrum
Disorder (ASD). As the psychiatrist told Sam’s
mom and I, “Sam is a poster child for
ASD”. Sam has lowered cognitive
abilities and lowered verbal skills. Sam lives with his
mom, dad and his younger
sister who is six years of age. She is a typical child with no
physical or
mental health issues.
Sam was adopted at birth. He had no prenatal issues and was
a healthy infant. At around 18 months of age he began exhibiting ASD like
behaviors and after six months of reassurances by his primary doctors that he
was fine Sam was diagnosed with ASD. Since his diagnoses he has received special
education services, speech therapy, occupational therapy, and behavioral
therapy. He had been on the Gluten-Casein Free Diet (GCFD). He has been treated
by a doctor (supposedly one of the best in the country) who treats ASD patients
following the Defeat Autism Now (DAN) protocol which emphasizes a
“BioMedical” approach established by Dr. Rimland the founder of Autism
Society of America and the Autism Research Institute in San Diego, CA.
As a family we have spent tens of thousands of dollars
trying to help Sam. Even though as a teacher I have full coverage insurance,
many of the services and doctors Sam has seen are not covered under my plan.
Blue Cross of California still categorizes ASD as a “mental illness” instead
of an “organic disorder” which precludes it from receiving the coverage a
typical physical illness would be granted. I only mention this because since Sam
was diagnosed with ASD we have devoted ourselves to helping him. This devotion
has been in the forms of time, effort, education, therapy cost, medical costs,
conferences, parent support groups, and most importantly love.
Sam’s Strengths
Sam loves people and he loves to “be on the go”. He has
been to Disneyland four times, been camping many times, and has been to San
Diego to visit the zoo, Wild Animal Park and Sea World. Sam loves to go to San
Francisco Giant and Sacramento Kings games and loves to travel to San Francisco.
Sam is our gift from God and we love him just as he is. Many tears have been
shed from worry and from the joy of watching Sam achieve things parents of
typical children take for granted. There have many moments of laughter and
warmth given to us by our quirky, sweet, lovable, little boy.
Purpose of this Journal
I write this journal for Sam and other children like him.
We almost lost our little boy to ASD and pharmaceuticals. By the grace of God
and the help of a little Medical Cannabis (MC) we have him back. Maybe this
journal can give other parents hope when all else seems dark and hopeless. Maybe
this journal can prompt others to tell their stories if they have treated their
ASD child with Medical Cannabis (MC). Even more important would be some
legitimate scientific studies conducted to determine the effectiveness of MC to
treat symptoms of Autism.
I never wanted to be an advocate for Medical Cannabis (MC).
I do not drink alcohol, take marijuana, or any other psychoactive drug. However,
this experience has been so profound and dramatic that I feel no choice but to
speak out on the issue. I understand the political and legal sensitivity of
giving an eight-year-old child medical cannabis but if one child and family can
be helped from my disclosure any risk to myself is acceptable. As a parent, I
only want to help my son. No one ever questioned our decision to give our son
the potpourri of pharmaceuticals prescribed by his doctors that, in my opinion,
almost destroyed him.
My wife and I both have very conservative parents and
families who are very much opposed to any type of “illegal” drug use. We
have their complete support. They witnessed Sam’s deterioration over the last
year and they saw his almost miraculous turn around once we started using the
MC. We have only disclosed treating Sam with MC to our closest family. We have
shared the information with Sam’s primary pediatrician on the recommendation
of Sam’s MC Doctor. The pediatrician has been supportive in an “off the
record” manner. He has been Sam’s pediatrician since birth and he knows that
we are responsible parents.
Sam’s Educational Background
Sam has had significant difficulty in school. He did well
in preschool but began having constant problems once he entered Kindergarten.
After a few months in a Kindergarten Special Day Class (SDC) Sam was removed
from his neighborhood school and placed in a more specialized program for
children with ASD. In 1st grade he was removed from that program and
placed in a very restrictive setting that deals only with ASD kids (also public
school). The population of that program was much lower than Sam, i.e., he was
the only verbal child out of 12. Throughout this time Sam continued to have
severe behavioral problems. To begin the 2007-08 school year he was placed back
at his home school. His negative acting out became so intense and frequent
that he was only able to attend school for 3 hours each day and was
getting sent home at least 2 days each week. He was extremely unhappy at school
and this unhappiness seemed to compound the increasing difficulty he was having
at home.
In December of 2007 Sam was placed in a Non Public School
setting due to his aggressive, destructive, unsafe and antisocial behaviors.
Data from a Functional Analysis Assessment done over a month period of time by a
Behavioral Intervention Specialists (BIP) showed that Sam was having anywhere
from 10-20 hitting, pushing, knocking things over, running off incidents per
each 3 hour day. In summary, school was a disaster. Sam wasn’t learning
anything and the teacher and his one-on-one aide were just trying to prevent him
from hurting himself, them, or other children.
Medical Intervention with Pharmaceuticals
Throughout this time we were encouraged by school personnel
and his doctors to keep trying different medications until we found one that
would help him. We were told that this could be a long process because kids with
ASD were extremely sensitive to medications in general and that there was no one
drug that worked for every kid. We were constantly reminded of the success
stories of other children. Unfortunately, taking any of the medications
prescribed by his doctors never helped Sam.
On the contrary, Sam’s mom and I were seeing a dramatic
escalation of his anti social behaviors at school and at home. We had never had
such intense problems at home. Sam’s condition imminently threatened the
safety of our six-year-old daughter whom he began hitting on a regular basis.
There were times when I would have to physically restrain Sam because he was in
such a rage. He would go around the house yelling and knocking things over as if
he were going crazy. He would try to run out of the house at 10 PM in the rain
with no shoes on. Our home became a lock down facility. We were all miserable
and Sam just kept getting worse. The future looked bleak.
All this time we were going through a litany of medications
to “help” him. Over a
two-year period we did trials with Respirdol and Abilify
(atypical antipsychotics), Ritalin and Adderall (amphetamines), Prosac, Paxil
and Celexa (serotonin reuptake meds), and Tenex (Guanfacine),
which is a blood pressure medication. We have a cupboard full of prescriptions
for Sam. We tried different versions of the same type medications. We were
encouraged to keep trying a medication until we knew for sure it worked or
didn’t work. The problem was he
was having significant negative reactions to each medication he would try. He
gained 10 pounds in 6 weeks on the Respirdol. Some of the meds, like the
amphetamines, were obviously ineffective but others like the abilify, reperdal,
and paxil took time to develop negative side effects. The last medicine we tried
was the Celexa. He was on it for 2 days in December and had a severe negative
reaction. To put it bluntly, he “flipped out” on the medication. We stopped
giving it to him immediately but the negative effects lingered with Sam for
weeks. At that point we took Sam off all medication. His doctors recommended we
try Depakote next. At this point, we were fearful that we would be able to
manage him at home either with or without medication.
Decision to Use Medical Cannabis
At this point it was clear that the medications being
prescribed by his were not only failing to help Sam but they were harming him.
He had gained significant weight, had an increase of aggressive and
unpredictable behaviors and, most alarmingly to us, became very distant to those
he had always loved so much. He began hitting his grandmothers and sister, and
did not engage with his parents as he once did. He even became distant to me,
his dad, the one person whom he had always had the most attachment. It was
heartbreaking to watch him slip away. It was like the Sammy we had known was
disappearing and we feared that he would steadily slip into greater isolation.
There were several episodes that were so bad that we considered taking him to
the hospital.
My wife came to me with the suggestion that we consider
treating Sam with Medical Cannabis. She had found information on the Internet
that documented another parent’s success in treating her son who had similar
characteristics to Sam with Medical Cannabis. I researched the subject myself
and found an article written by Dr. Bernard Rimland from the Autism Research
Institute that authenticated the parent’s story and stated the he would be
more in favor of trying MC before he would more “toxic” pharmaceuticals. The
article can be found at the following address (http://www.autism.org/marijuana.html).
After discussing it with my wife and Sam’s grandparents,
we decided to pursue it further. I knew very little about getting a
recommendation from a doctor but was able to contact a doctor in my local area
who recommends MC to patients. We had no idea how to obtain marijuana and we
didn’t want to do anything illegal. We made an appointment with the MC doctor
and gathered up all Sam’s medical and school records The doctor reviewed the
case, examined Sam, and educated us on Medical Cannabis. He also made it clear
that we would need to share information with Sam’s primary pediatrician.
Additionally, we discussed the sensitivity of the issue and the risk that we
were taking. As a team, we decided to maintain a “need to know policy”
regarding Sam’s new medication. It was decided that school personnel did not
need to know. Sam’s mom and I learned that in California a physician can
“recommend” MC. It is not called a prescription but a recommendation. We
also discovered that we would be able to obtain the MC locally through a
Cooperative.
Using Medical Cannabis to Treat Sam
I have been keeping a journal since the trial began. The
entries were daily to begin. After the first three weeks I reported every three
to four days. I am not including every journal entry in this paper because it
would be too long.
January 8, 2008
Today was the first day we gave Sam MC. We obtained the
medicine around 3:00 PM. Because Sam is such a finicky eater we were very
concerned about putting the medicine in baked goods. We wanted to give him the
same amount of medicine at the same times each day and we knew that the baked
goods could be problematic. Sam doesn’t like to eat breakfast before school
and has an almost uncanny ability to detect anything that we place in his food.
Often, he smells food before eating. Due to these considerations, we decided to
give him the MC orally, in the form of Hashish.
At 4:00 PM we administered his first dose. We gave him an
amount that was about the size of a BB. We rolled the dose into a tight ball and
buried it in a spoonful of yogurt. We told him he was taking a new medicine. He
chewed the MC when he discovered it in the yogurt. He complained of the taste.
We wanted to start out with a very small dose.
Sam had been having another horrible day before the dose.
After 30 minutes we could see the MC was beginning to have an effect. Sam’s
eyes got a little red and got a bit droopy. His behavior became relaxed and far
less anxious than he had been at the time we gave him the MC. He started
laughing for the first time in weeks. My wife and I were astonished with the
effect. It was as if all the anxiety, rage and hostility that had been haunting
him melted away. That afternoon and evening his behavior was steady and calm. He
started talking to us and interacting with us again. Sam’s was physically more
relaxed and began initiating physical contact with the motivation being
affection instead of aggression. It was amazing! He went to sleep that night
with no problem and slept through the night.
January 9th, 2008
Gave Sam about ½ dose (1/2 BB) of MC at 7:00 AM. He was
not attending his new school yet so spent the day with Grandparent while we were
at work. He had rough morning. Hitting, yelling, non-compliance, trying to jump
in their freezing cold pool, and running out the front door.
Re-dosed Sam at 3:30 PM when I got home from work. I gave
him a BB sized dose, as I had the previous day. I feared that our experience was
an anomaly and that, like all the other meds, it was just false hope.
After 30 minute of giving Sam the dose his behavior
deescalated to the levels it was the previous night. He was calm, happy,
affectionate, more verbal, more compliant, and much more predictable. I noticed
that he was open to conversation and even receptive to some short reading
instruction. His reduced anxiety level made his behavior manageable and even
agreeable. He was perseverating about certain things far less and we were able
to redirect him far more quickly and effectively when he did get upset or need
correction.
January 10th, 2008
Gave him BB sized dose at 7:00 AM. He was staying with his
Grandparents again for the day because he was not in school and we had to work.
Before 8:00 AM he had a few episodes of acting out. He was becoming agitating
and anxious and then around 8:20 my mom noticed that the MC was beginning to
take effect. She described it to me as follows. “It was like a wave of
calmness just swept over him and he changed from being a monster into a
loveable, little boy”.
When I got home from work he was still doing great. I
didn’t give him an afternoon dose and he was fine for the rest of the day.
Slept fine that night.
January 11th, 2008
BB sized dose at 7:00 AM. Spent day with his mom. Had one
blow out on walk when he wanted to jump in a small creek. No PM dose was
necessary. Improved cooperative play with his sister. His sister came to me in
disbelief when Sam was playing with her. She said’ “Sam is acting like a
regular brother today”. When she told me that I just cried because here was
this little girl who had lived in such fear, for so long, finally getting a
brother she could love. Sam laughed and played. Again, the results we were
getting far exceeded anything we could have imagined.
January 12th, 2008
¾ BB sized dose at 8:00 AM. It is a Saturday. Did Ok up to
2:00 PM and started to get agitated and anxious for an hour or so. Re-dosed him
at 3:00 PM with ¾ size BB and within 1 hour he has calm again. That afternoon
around 4:00 PM he lay down on our bed and took a nap. He rarely naps but fell
asleep for an hour. Woke up happy and had a good evening.
January 13th, 2008
8:00 AM dose; 1 BB size; Sunday; plans to go to Boat and RV
show. Sam did great at the boat show. No running off, easily redirected, no
yelling, and happy. It’s like he is a bit elevated and tipsy. He does look a
bit “high” to us but it would never be noticeable to anyone else. His speech
is clear (no slurring) and his gross or fine motor coordination are normal. In
fact, his speech is moderately improved on the medication (both expressively and
receptively). His anxiety level is greatly reduced and it just seems that he can
concentrate better for longer stretches of time. This may contribute to the
improved language skills we are noticing. If I scaled his anxiety from 1-10, (10
being extreme anxiety and 1 being no anxiety at all) I would place him at a 3
for today. Prior to the MC trial that began Jan. 8th, I would have
placed him at a 10. No aggressive behaviors. No hitting, kicking, or threatening
to do so. Sam is displaying much greater affection and is more compliant and
social. He still has deficits in these social areas but far less pronounced than
before the MC trial.
January 18th, 2008
The following dosage is what we give Sam. The form of MC is
hashish.
¾ BB size dose of MC at 7:00 AM
¾ BB size dose of MC at 3:00-4:00 PM (if necessary)
The MC continues to be a very effective medication. Sam
aggression has decrease dramatically. Prior to the medication trial, Sam was
averaging 4-5 major outbursts per hour at home and an even greater frequency at
school (see Functional Analysis Data Summary). An outburst could last minutes or
hours. The behaviors included hitting, threatening to hit, kicking, throwing
things, knocking things over, destroying property, yelling, crying, running off,
and doing other unsafe acts like climbing over fences and leaving the house
without supervision at night. Once Sam got into an agitated state it was
extremely difficult to redirect him or get him to “move on” to something
more positive.
I really like the flexibility we have with the MC. There
have been afternoons where a dose hasn’t been necessary. We don’t want to
give him any medication unless we see symptoms that justify it. The AM dose is
consistent because he is going to school but the PM dose can be eliminated. We
have been giving him the PM dose 4 out of 5 days on average. Another convenience
of the MC is that we can adjust his dose slightly depending on certain
variables. If we something special planned, we can adjust the dose. For example,
last night our daughter was given a Student of the Month award. There was a
ceremony at the school board meeting that lasted 45 minutes or so. Sam was able
attend and sit throughout the ceremony without incident. He was able to enjoy it
and obviously, for us as parents, it was great that we were both able to be
there for our daughter. This is in complete contrast to what usually happened to
us when we had to take Sam somewhere like this. Before Christmas and prior to
him being on MC, our daughter performed in a school musical. Within 10 minutes,
I had to leave with Sam because he would not sit down and he began yelling when
we tried to get him to stay and watch. This incident pretty much illustrates
what life was like for us before this medication. I am not saying that this
wouldn’t happen again but now we feel we have a chance for Sam to be
successful in situations where we had little hope before.
January 20th, 2008
Since the MC trial began, Sam has not had one act of
hitting, kicking or threatening to hit. This includes school and home. SAM
HASN’T GONE THIS LONG WITHOUT AGGRESSIVE BEHAVIORS IN YEARS. Additionally, the
following improvements have occurred. I have classified these behavioral
improvements into the three categories; Reduced Behaviors, Significant
Improvements, and Mild Improvements.
Reduced Behaviors
- Reduced
aggression
- Reduced
anxiety
- Reduced
mood swings
- Reduced
crying for no reason
- Reduced
negative self talk
- Reduced
obsessive/compulsive behavior
- Reduced
non compliance
- Reduced
running off and escape behaviors
Significant Improvements
- Improved
attitude and happier. Shares happiness with others appropriately. (Before
the MC trial, the only time Sam laughed was when others were angry, crying
or hurt)
- Increased
flexibility to changes in routine or plans
- Quicker
transition from being upset to being OK
- Improved
affection to others
- Improved
concentration and on task behavior at school
- Improved
physical well-being. Far less complaining of stomachaches (probably because
of being off other prescriptions) and more typical diet (the pharmaceuticals
either made him habitually starving (Respirdol and Abilify) not hungry at
all (Adderall, Ritalin) or caused him to have stomach irritation (Paxil, and
Celexa). As I’ve stated, we feel much better about giving Sam MC that we
did giving him the pharmaceuticals.
Mild Improvements
- Improved
language (receptive and expressive)
- Reduced
self stimulation with finger play and fingers to mouth
- Reduced
hyperactivity
- Increased
ability to learn new information
- Improved
sociability with peers
February 21st, 2008
Sam continues to do great! He is getting great reports from
school. His teachers write daily in a school journal. There has not been one
negative entry and they are considering placing him in a more typical setting.
Here are a few entries.
2-7-08
“Sam had another great day. He is such a joy to be
around. His all day smiles and
giggles are contagious.”
2-8-08
“John and I are so proud of Sam. He had a great day!
He earned a trip to the barn this afternoon.”
2-20-08
“Sam did great! Today was the “Safety Fair”. Sam
was awesome. He participated at each booth.”
2-21
“Another great day. We are currently working with
Judith to develop a reading program that meets his needs. He always seems so
excited to do his work and does great transitioning”.
2-27-08
Sam did great today! He was so awesome at the talent
show. We won 3rd place!”
Removing the Medical Cannabis
After discussing the matter with Sam’s MC doctor, we
decided to not give Sam any Medical Cannabis before school for a week or so to
see if some of the negative behaviors returned. I concluded there were three
main variables that could have accounted for Sam’s major improvement. One was
the medical cannabis, two was his new school, and three was that he was no
longer on any kind of prescription pharmaceuticals. On February 28th
and February 29th (Thursday and Friday) Sam went to his new school
for the first time without MC.
On both days Sam had acting out behavior that his teachers
had not previously seen. He didn’t hit but he did knock things over in his
classroom and did a lot of negative self-talk. The staff was able to get him
turned around pretty quickly but they were concerned that he was acting out at
all. They had not seen any of this behavior since he started there.
Conclusions
Sam’s life has improved dramatically since he began using
medical cannabis to treat his Autism Spectrum Disorder. Because Sam is doing
better, we are all doing better. We have our life’s back again. We still have
an autistic son who faces many challenges but our lives have improved
immeasurably. We can take Sam out to dinner, go shopping, visit friends, plan
vacations, take him to visit his Grandparents, laugh as a family, and not be
constantly worried that he is going to hurt our daughter or himself. In other
words, we can live without being consumed by Sam’s autism. Most importantly,
SAM IS HAPPIER AND HEALTHIER.
We are going to continue to treat our son with Medical
Cannabis. No one ever questioned us when we gave Sam all the other medications
that never helped him, and in my opinion, caused him to harm. Medical Cannabis
is natural and non-toxic. The only side effects we have observed so far are
glassy and reddened eyes and an occasionally a slight drowsiness. When he wakes
each morning up he is alert and happy. He has not built up a tolerance to the
medication. We skip doses whenever we can. With the other prescriptions we were
instructed to never miss a dose or it could disrupt the medication’s
effectiveness.
I am not a scientist or a doctor. I am a high school
teacher and a dad. Medical Cannabis may not help every kid like Sam but I think
it should be one of the options for parents. I would like to see controlled
studies done to determine if MC could be an effective treatment for people with
ASD. I would like to see more user-friendly forms of MC available to patients
(inhaler, pill, liquid forms). I would also like to hear from other parents who
may be treating their child with ASD but are afraid to disclose it because of
possible legal retribution.
I am in no way encouraging someone to try Medical Cannabis
on their own without the guidance and support of a physician. I also recommend
that there be a working relationship between the MC Doctor and the primary
pediatrician. The primary pediatrician at least needs to know. Our MC Doctor
contacted our primary pediatrician and without revealing the patient’s name
asked him how he would feel about treatment with MC. Our MC Doctor felt this was
the professionally appropriate thing to do and I agree with him. Sam’s school
does not know he is treated with MC and we don’t feel they need to know. We
have been very selective in who we share information with.
It is difficult for parents of typical children to
understand what it is like to be the parent of a child with ASD. I have worked
with Special Needs Children for over 18 years as a Special education teacher in
public schools (RSP and SDC). I have a Masters in Education with a Special
Education emphasis. Yet with all this experience, I had no idea how consuming
and life altering having an Autistic son would turn out to be. We know there are
other parents out there who are facing the same challenges we face and like us,
would do whatever they could to help their child. When I went to research this
topic a story like this would have been useful. I hope Sam’s Story might be
helpful and informative to other parents who are considering treating their
child with MC.
This paper was written by Sam’s dad and completed on
March5, 2008
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