Children & Cannabis #5: Success Stories With Pediatric Cannabis

These four powerful anecdotes are proof that sick children need access to medical cannabis.

May 30, 2016

Thus far in our Children and Marijuana series, we’ve gone over the pros and cons of pediatric cannabis treatment, looked into potential effects on a child’s brain, and walked you through some of the known conditions marijuana can treat. Now, it’s time to share stories from those who have found success. Not every pediatric illness is effectively managed with cannabis, but these four anecdotes are proof that sick children need access to medical marijuana. Without further ado, here are some success stories with pediatric cannabis. 

Zaki Jackson’s story

By the time Zaki was five-years-old, he had over 500,000 seizures. Zaki has Doose syndrome, a rare form of epilepsy that caused thousands of seizures each day. His seizures began when he was only four months old. By the time he was 10, he had been on 17 different pharmaceutical medications.

Zaki’s doctor, Colorado-based Dr. Margaret Gedde, explained to reporters that prior to cannabis treatment, Zaki couldn’t be present. He had trouble being in contact with people. His medications caused weight gain, insomnia, and at times he became incoherent.

This was when they decided to try something different. The Jackson family turned to Charlotte’s Web.

Charlotte’s web is a form of high CBD cannabis bred by the Stanley Brother’s of Colorado. The strain is named after Charlotte Figi, a young girl with another rare form of epilepsy called Dravet syndrome. Once little Charlotte began using the high CBD marijuana strain, her seizures dropped from over 300 each week down to a few a month. Zaki’s mother, Heather Jackson, sought out the same medication.

Like many children who have turned to cannabis treatments, finding the right dosage for Zaki was a bit of a battle. In a piece published by Al Jazeera, Jackson says:

We saw immediate results. He was seizure-free for 48 hours after starting. Because of our history – almost a decade of (treating) this – I find it really hard to be cautiously optimistic. I was thankful, of course, for the result we were seeing, but I wasn’t sure how long that was going to last. It was a little bit crushing when the seizures came back. – Jackson

Still, the Jackson’s kept trying. They upped the dose of CBD and adjusted his pharmaceutical medicine. Zaki would be seizure free for 10 to 14 days, and then his seizures would begin again. Finally, after three months, Zaki was taken off of all pharmaceutical medicine and his seizures stopped completely.

After one year of CBD treatment, Zaki remained completely seizure free. For the first time in 10 years, he was able to begin developing like a normal child. The change was dramatic. Jackson writes:

Now I can have a conversation with my son. He’s sleeping better. He’s eating better. He’s learning. He knows his colors. He’s writing his name. The turn around is just absolutely incredible, and it’s not a honeymoon period. We are over a year into his healing. Our whole family can heal. – Jackson

Zaki’s incredible response to CBD oil inspired Jackson to launch Realm of Caring. Realm of Caring is a nonprofit organization located in Colorado Springs. The organization raises funds for research into cannabis medicines, work with clients to walk them through medical cannabis options, and advocate for medical marijuana research and access nationwide. Jackson is the Executive Director.

Hugh Hempel’s story

Hugh Hemple wasn’t a fan of marijuana. It took one of the biggest challenges of his life to change his mind. What was that challenge? His 11-year-old twin daughters were slowly dying. His daughters, Addison and Cassidy, have Niemann-Pick disease. Niemann-Pick is a rare condition with a disturbing nickname, “childhood Alzheimer’s”. In normal children, the brain continues to grow and develop through the mid-twenties. Yet, in those with Niemann-Pick, excessive build-ups of cholesterol around nerve cells. This causes neurodegeneration. Addison and Cassidy lost their ability to walk and talk.

In normal children, the brain continues to grow and develop through the mid-twenties. Yet, in those with Niemann-Pick, excessive build-ups of cholesterol around nerve cells. This causes neurodegeneration. Addison and Cassidy lost their ability to walk and talk.

Each week, both of the girls go through an eight-hour long infusion of cyclodextrin. Cyclodextrin is a sugar compound that miraculously helps the body clear out some of this unnecessary cholesterol. This procedure is accompanied by a biweekly lumbar puncture, to help the medication reach their brain. As you can imagine, this process is incredibly grueling and painful. This treatment, in theory, slows some of the neurodegeneration, hopefully prolonging the twins’ life.

As you can imagine, this process is incredibly grueling and painful. This treatment, in theory, slows some of the neurodegeneration, hopefully prolonging the twins’ life.

While there is a lot of hope behind the cyclodextrin treatment, it does nothing to stop the seizures associated with the brain damage the girls now face. This is where medical marijuana comes in.

Three times a day, Addison and Cassidy are given high-CBD cannabis oil. They had tried treating the twins with solely pharmaceutical medicines, but the drugs turned the girls “into zombies.” Once they introduced CBD, things changed. Hemple explains:

Unfortunately, this oil doesn’t even completely, for our children, stop their seizures. So, we still use a small ammount of pharmacutical medicine, but we use less. We’ve reduced the number of drugs our kids take, and we’ve reduce the [dose] that we do give them.

And, consequently, our kids are not only having fewer seizures, and shorter seizures, they’re also bright-eyed and happy children again. They’re no longer little zombies.

After seeing a profound difference in his children, Hemple transformed from a try-everything father into a medical cannabis advocate. Hemple is now CEO of Nevada-based Strainz. Strainz is an up and coming major cannabis brand with operations beginning in Colorado, Nevada, and Washington. They will be launching tinctures, oil cartridges, and many other cannabis products.

Medicinal cannabis can be the health care success story of our lifetimes. But only if we all engage in learning the truth and ask our federal government to end our prohibition of cannabis.

Calvin Lockwood’s story

Calvin was in  pain. As a teenager with autism, Calvin could not speak and was hitting his legs over and over again. He would bite them until he broke the skin. Like any concerned parent, Rebecca Lockwood took him to the hospital.

We kept being told it’s behavioral. We took him to the doctor over and over and they said he’s just behavioral.

Turns out, Calvin had femoral retroversion. Femoral retroversion is a painful condition in which the femur is rotated backward in the hip socket. Cavin needed surgery.

Once the Lockwoods found out that Calvin was in quite a bit of pain, he was put on oxycodone, Tylenol with codeine, and other pain medication. They would work for a while, but then he would start hitting again. Calvin could not sleep. Sometimes his insomnia would last for two days straight. So, the Lockwoods decided to give cannabis a try.

It’s really a shame that he qualifies [for medical cannabis] for pain.

But, before the pain, running around, beating his head until it bled, biting himself, puncturing his skin, horrible, horrible self-injurious behavior. He was super aggressive, he wasn’t sleeping, he was taking off at night and we back to a four-lane road. The whole thing was just really dangerous. For autism not to be considered a life-debilitating condtion, is beyond me. – Lockwood

These episodes would last about two hours every day. During these episodes, Calvin would have to be constrained with blankets, and kept away from walls. He has even developed scarring and is unable to grow hair at his hairline because of years of continued self-abuse. He flooded the house 60 times.

His anxiety was so bad he flushed anything that made him feel nervous. No matter what it was.

But, after the cannabis oil? The difference was night and day. Calvin was finally able to sleep. This gave his body a much-need rest and gave his parents some peace of mind.

We couldn’t sleep at night. One of us had to be with him. He was eloping. He’d come in through the living room door from our deck at one o’clock in the morning. He would just take off and one of us would have to stay awake. […] There was no peace.

Yet, improved sleep isn’t the most surprising benefit. While Calvin was once having episodes every single day, they have dropped down to a couple per week. The episodes are also significantly less severe. Calvin’s communication has improved, he has been better able to pay attention and understand things.

We refer to episodes as full-blown, head through the wall, blood. And we have had maybe three of those, other than detox, since starting cannabis. The first two months, we went 14 days without a single self-injurious behavior. And we thought, ‘what’s going on? Is the oil not working?’ and then he went another 13 days without a single self-injurious behavior.

The Lockwoods aren’t the only family who has found success with medical cannabis for autism. Other concerned mothers have created the advocacy group Mothers Advocating Medical Marijuana for Autism (MAMMA). Though, it is still not possible for patients with autism to access cannabis in many states.

However, the willingness of mothers like Rebecca Lockwood to come out with their stories makes us one step closer to providing those in need with access to effective medicine.

Waldo Dwyer’s story:

Waldo had bilateral retinoblastoma. This rare form of eye cancer struck Waldo when he was a mere six months old. Retinoblastoma in children is associated with a specific gene mutation. There are only about 200 new cases of this cancer each year, and the impact can be devastating.

Waldo was immediately put on chemotherapy. Without it, he would have risked losing his eyesight or even his life. Shortly after beginning chemotherapy, his parents noticed a change for the worse. His father, Brian James Dwyer, explains:

He stopped crawling, he stopped laughing, he stopped eating, and he stopped sh*tting. Basically, everything we new about Waldo started to disappear. We were given no further instructions about what to do beyond ‘give him more drugs.’ – Dwyer

Waldo became violently ill. He was vomiting, crying all of the time, and started rapidly losing weight. Prior to the cancer diagnosis, Waldo had made headlines for weighing nearly 13 pounds at birth. So, this once heavy and healthy baby quickly began wasting away.

The Dwyers wouldn’t have it. After breaking the news about Waldo to a couple of close family friends, Brian Dwyer learned about cannabis oil. After a late night of research, he decided to take a risk. At the time, medical marijuana was not legal in their home state of Pensylvania. So, Dwyer flew cross country to find high-CBD cannabis oil and bring it home. Taking this risk and breaking the law saved his son’s life.

I thought maybe it would help his nausea. But within an hour he had stopped crying. Within four hours, he was crawling, even laughing… He didn’t puke once after we started giving it to him. – Dwyer tells Philly Voice.

Cannabis oil worked so well that they eventually stopped all prescription medications. Waldo continued with chemotherapy, but the extreme illness associated with the condition was controlled with cannabis oil alone. The best part? Now, at two-years-old, Waldo is tumor-free.

We believe that weed saved our family from the bottomless pits of dispair, pain, and hopelessness. It gave us a sense of control in a situation where we felt we had none. – Dwyer

Waldo’s battle with cancer has turned Dwyer into a medical marijuana advocate. He traveled within his state to fight for marijuana decriminalization. Pensylvania has recently legalized medical marijuana, but the bill does not allow access to plant forms of medication. So, the Dwyers are moving to Oregon.

I’ve got to be honest, if my son has a lifelong fight with cancer, we’ve got to do this. – Dwyer

The Dwyers are now making a documentary about Waldo’s journey. They plan on releasing it for free over the internet because the world needs to know about medical cannabis. If you’d like to donate to the documentary project, you can do so on their GoFundMe page. 

Stories like these are becoming more and more common around the world. The children and conditions mentioned in this article are only a small sampling of those that medical marijuana has helped. Thanks to their courage to speak out, these parents have help to move the cannabis movement along little by little.

Patients and parents both deserve a round of applause for their willingness to take risks and fight for access to effective medicine. Thank you for sharing.

Do you know a pediatric cannabis success story that needs to be shared? Give us the details on social media or in the comments section below. We’d love to hear from you!

May 30, 2016