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An Arizona Family’s Fight to Treat Autism with Medical Marijuana

Brandy

Autism is a difficult disorder to understand given its broad spectrum and varying degrees of severity. It’s been quite the journey for Arizonans Brandy Williams and Shaun Simpson in handling their son Logan’s severe autism, which is also compounded by epilepsy and other health conditions. But, medical marijuana is helping Logan tremendously and has given the family hope that more progress will follow.

AZmarijuana.com sat down with Brandy to chat about her experiences:

What is Logan’s exact diagnosis?

Brandy:  Logan was diagnosed with encephalopathy, absent seizures, inflammatory bowel disease, sensory processing disorder, speech apraxia, and a feeding disorder. He’s severely impacted by autism and has other comorbid conditions. His needs are significant.

When was Logan diagnosed?

Brandy:  The screening process took nearly two years. He was placed on an at-risk for autism diagnosis in November 2012, when he was 30 months old. He was officially diagnosed just 3 months before his third birthday. Different therapies started before his official diagnosis.

What was a day with Logan like before you started him on the RSO oil?

Brandy:  Logan was suffering in multiple ways. His sensory system was so overwhelmed he basically retreated inside himself. He shut down. He was in a constant state of fear, anxiety or rage.

He had major self-stim behaviors and would jump up and down, stiffen his arms really tight and flap his hands vigorously. It looked really uncomfortable. He would rock back and forth, he had a high-pitched verbal stimulation and it was ear piercing. He would grind his teeth so hard all his baby teeth were ground down flat (Bruxism).

His aggressive behavior started when he had a full mouth of teeth. He would bite people so hard it broke the skin. He would rip my hair out. He head-butted me so hard he gave me a concussion. I was diagnosed with post-concussion syndrome, I still get migraines, and vertigo spells.

It progressively got worse as he moved out of the toddler stages. In 2015, just before we got Logan’s card, his HAB worker documented 75-150 head bangs per 8-hour shift.

As soon as my son woke up and his feet hit the ground, everyone in the house was on high alert. I could not leave him alone for a second. There was no privacy going to the bathroom or showering. My son had to sleep in our room, out of fear for his safety. We didn’t want him to wake up in the middle of the night and elope, harm himself, or have seizures in the middle of the night.  We basically slept with one eye open.

The video below is a sample of one of Logan’s behavior before medical marijuana.

What treatment(s) did you try before cannabis?

Brandy:  Logan was prescribed the antipsychotic drug called Risperdal and was given a script for a helmet by the time he was three and a half. The helmet wasn’t going to prevent him from banging his head. He was still at risk for head injuries despite the headgear.

We started doing biomedical approaches to autism shortly after his diagnosis. We changed his diet and removed pro-inflammatory foods from his diet, remove toxins from our home, gave him supplements based off his lab work, glutathione pushes, methylated B12, hyperbaric oxygen therapy, we looked into stem cell therapy. He had 2 hours of speech therapy, two hours occupational therapy, physical therapy, music therapy, hippotherapy and behavioral interventions.

When did you start looking into cannabis as an option for him?

Brandy:  In 2014. The Welton family, from Mesa, sued the state and pediatric cannabis became available. Even though my son had a qualifying condition (epilepsy), I was still afraid to get his medical card. My son saw some of the best medical professionals in Arizona, I felt if I got him a cannabis card they would kick me out of their practice and I needed them to help me with my son.

So, we tried CBD only at first (so that we didn’t have to apply for the card), but we quickly realized my son was going to need whole plant cannabis extracts. It took some time to save up the money for his card. June 19, 2015 was the first day I gave my son whole plant cannabis and it was the best decision I have ever made for him.

What was the process of finding the right combination of strains to help Logan like?

Brandy:  First, we tried CBD and that didn’t help with the behaviors. I feel CBD is definitely beneficial he just needed more of a sedative affect. The first time I gave him full plant oil was June 19, 2015 and it was like a dream. It brought him relief in 20-30 minutes. We got the oil from a private caregiver. When we ran out of the oil we tried a many different strains and they didn’t have quite the same effect.  Sativa only didn’t help with his anxiety, indica only hit him too hard, hybrids just didn’t cut it. We realized the first caregiver mixed a variety of strains indica, sativa, hybrid and a CBD strain all together. I believe having a diverse cannabinoid profile is what helps him the most.

How long did it take you to figure out what Logan’s ideal dose of cannabis is?

Brandy:  It took about a year to find consistency in potency. I would use the feedback from other parents and it wasn’t too successful. I realized Logan’s sweet spot wasn’t going to be the same as anyone else’s. I learned about each individual component of cannabis and what type of effects each property had and that helped me figure out what I needed to purchase for my son.

We tried high-CBD, low-THC strains and that was not the right option. When our four specific strains are blended together, it’s what helps him the best. The different cannabinoid profiles of the four strains are our biggest benefit. In all, it took a year to find the best outcomes for Logan.

How long after starting cannabis treatment did you start noticing positive changes in Logan?

Brandy:  We started to notice a difference in Logan’s behavior in 20 minutes of his first dose. When it started working, he calmed his movements – his arms stopped flapping, he stopped jumping – he was calmer. For the first time, he sat down with me and watched a movie and reacted to what was happening in the movie. His reactions were appropriate for the scene – this was the first time his reactions were appropriate.

Bedtime was simple that night. Bedtime usually meant long periods of anxiety that would prevent sleep. At 9:30, he went to bed – he fell asleep and looked happy for the first time. He looked like he had relief.

When did you become involved in MAMMA?

Brandy:  Before I got Logan’s MMJ card, I heard Felicia Carbajal, from California MAMMAs at a lecture in Chicago. She spoke about MAMMAs. It is based out of Texas and was brand new at the time. By about November 2015, I was asked to start a new chapter here in Arizona.

What is your level of involvement with MAMMA?

Brandy:  I am the State Chapter President of the AZ MAMMAs. My focus has been to bridge both the cannabis industry and autism community together since June of 2015. We have monthly support group meetings throughout the valley. We also have an online Facebook support group for parents only.

Compared to a year ago, what is the difference in Logan today?

Brandy:  Within the first 2 months of using medical cannabis, Logan learned 180 new words. He retained the words, they’ve remained a part of his vocabulary. His speech started to become spontaneous, rather than just when prompted. Now, he speaks sentences that are 4 or 5 words long.

His impact on behavior were that his anxiety, rage, aggression, fear and self-injurious behaviors became decreased in frequency, duration and intensity.

He used to have 150 head banging sessions a day. Within the first two months the frequency of the head banging sessions grew less and less – he went down to 50 times a day, then 25 times a day and now it’s non-existent. He still gets frustrated from time to time but it’s not near the level it used to be.

He’s far more independent now. He can be left alone in a room so I can use the bathroom real quick. He’s actually playing appropriately with toys. He’s initiating play with other kids.

The only time he has a rough time is when he’s out of his medicine. The longer he goes without his medicine, the worse it gets. The first day is hard, but it’s manageable. By day 3, he’s unable to verbalize as much as when he does have his medicine. His aggression comes back.

Now that he has cannabis, he’s consistently in bed every night before 10 p.m., but usually he’s in bed by 8:30 or 9. He sleeps through the night.  He doesn’t stay up and stim all night. He’s able to feed himself. He wears clothes and doesn’t try to rip them off his body anymore – he gets dressed himself.

We can take Logan in public now. We’re able to go to restaurants together. I can have time to go shopping and read labels – no more grab and dash through the store.

He engages with people. He’ll greet people at the grocery store. He makes eye contact, smiles and gives high 5’s. He’s come so far!!

Things like overwhelming environments, loud environments don’t bother him anymore. He’s enjoying it. He’s not afraid of the public. He’s enjoying the world.

He’s writing his name now. Now, when I call his name – he looks at me, he responds. We can go and do pretty much anything we want now.

What are some of Logan’s most recent pieces of progress?

Brandy:  Most recently, Logan went for 55 days with no aggression. He started writing and spelling his name and he has a new best friend. He’s requesting music and dancing. He’s singing songs from Moana.

He tells everybody “Good morning”. He tells everyone he likes their shirt when we drop him off at school.  All the kids and teachers love him.

We got his hair styled for the first time. We used to have to hold him down and shave his head when it got too long. Now he sits in the chair for styling. He checks himself out in the mirror.

What would you say to other parents of autistic children that want to try cannabis for their children?

Brandy:  Be patient. Just because the first product you try doesn’t work, that doesn’t mean that cannabis won’t work. You need to find your child’s sweet spot. What works for someone else doesn’t mean it’s going to work for your loved one.

Don’t be afraid of THC! If they need it, they need it.

Always get everything tested. Everybody says they have the best product. Don’t take their word for it.

If Logan wasn’t diagnosed with epilepsy, would you still use cannabis?

Brandy:  I would move anywhere I needed to, to get access.

What has been your experience with trying to get autism added to the state’s qualifying conditions list?

Brandy:  The Cannabis Nurse’s Association has filed two petitions on behalf of Arizona autism families in January and July of 2016 to get autism added to the qualifying conditions list. The AZDHS didn’t even consider it.

MAMMAs along with two concerned citizens submitted applications in July with support from elected officials. A letter from elected officials accompanied our petition urging the Health Department to support our petition. We haven’t had any further communications.

If other families want to join the fight to get autism added to Arizona’s qualifying conditions list, how can they join the fight?

Brandy:  We can be found on Facebook. Search for Arizona MAMMAs. To contact me directly, feel free to email me at Brandy444@gmail.com. Only Arizona parents and guardians of children with autism are accepted into the Facebook group. Others interested in our efforts can visit our website at MAMMAUSA.org.

How grateful are you to cannabis for being the medicine to change Logan’s (and your/Shaun’s lives) life for the better?

Brandy:  I cannot do autism for another 5 years without it. I cannot watch my son suffer. Cannabis has brought a level of relief to his life I never thought possible. I just wanted to stop the seizures and what we got was so much more! I have so much hope for Logan’s future!

It saved the sanity of my family!!

This video shows what life with Logan is like today – massive steps forward.

If autism is impacting your family and traditional medical treatments/medications aren’t working, don’t be afraid to reach out for support. Medical marijuana changed Logan’s life for the better. He’s a happy, thriving cannakid.

 



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