Charlie Update: Kentucky's Own CBD Oil Refugee Thrives on Charlotte's Web

I first introduced readers to Charlie one month ago when the Byrd family arrived in Colorado.  Though they were excited to start Charlie's journey with Charlotte's Web CBD oil, the family already longed to return home. Here Charlie's mother, Crystal, tells us what life in Colorado has been like so far and she shares Charlie's progress on the oil. Crystal is also co-administrator of the CBD Oil for Autism and Epilepsy - Kentucky Facebook page.


Suzanne:

How long has your family been in Colorado so far?

Crystal:

We've been here almost 6 weeks. Charlie's been taking the oil for over 4 of those weeks.

Suzanne:

How was Charlie's initial adjustment to Charlotte's Web?

Crystal:

Charlie has done well so far. His initial doses were smaller to allow us to titrate up slowly as needed. The oil is administered under his tongue three times daily. He doesn't even mind taking it. There have absolutely been NO side effects observed and we've actually been able to lower some of the other four anti-epileptic drugs he was on!

Suzanne:

That is remarkable and certainly unheard of compared to some of the other medications our children take. Have his seizures reduced compared to before Charlotte's Web?

Crystal:

We have had several rounds of seizure free spells and are hoping to see more of that as we go up on Charlotte's Web. Seizure control can take months due to the delicate balance of his existing drugs interacting with the CBD oil. Charlie has slow waves between 3/4 that should be between 5/6 prior to CBD. 


Suzanne:

Have you noticed any developmental progress beyond seizure reduction?

Crystal:

Changes in communication, alertness, eye contact, physically, fine motor and just all around improvement. He's beginning to problem solve and effectively use words in sentence form which he could never do prior to CBD. Charlie has always been extremely intelligent: able to memorize entire movies, knew his alphabet by 2 years of age, counting, shapes and hundreds of animals - but he couldn't apply any of it. It was in there but the sub clinical activity (slow brain waves on EEG) prohibited him from being able to use his understanding in conversation. Now he can at least pull thoughts out quickly enough to communicate that he relates to conversations and  then respond.

Charlie is also jumping and climbing a lot easier due to what seems is an increase in interest to use his body parts to propel himself. It's amazing as a parent to see things that no one else would notice aside from his physical, speech, or occupational therapists. Charlie has really responded well to this treatment and we hope that more good is to come.

CBDs are anti-inflammatory and neuroprotective.  It would be nice if all epileptic or autistic children could try CBD. If not for seizure control then at least for the neuro-protective and anti-inflammatory properties.

Suzanne:

It has been wonderful following Charlie's progress over the last month and getting to enjoy your reactions to it. Your sense of awe really comes through.

Research shows that many with autism have brain inflammation and oxidative stress. Perhaps the anti-inflammatory and anti-oxidative properties of CBDs are playing a part in why autistic children who take the oil are responding so well?

What has moving across the country from Kentucky to Colorado been like for your family? Will you stay there now that you know the oil is working or will you have to come home?

Crystal:

Unfortunately, even though the oil is working we only have the financial resources to maintain one home.  In Kentucky both of us were able to work with help from my in-laws and my parents to drop off and pick up Charlie from school. In Colorado only one of us can work so the other can be there for Charlie. The cost of living and home buying in Colorado is significantly higher than Kentucky. Buying a second home isn't an option so we are forced to rent at over 1,000 a month! This has been the hardest month of our family life. Charlie is stuck in a small apartment with no family, no friends, without his wonderful school support and our church. It goes on forever. This is a time to celebrate Charlie's new accomplishments and we can't even share them with those who know and love him except through Face Time or Facebook.

And I think it's crazy I can order high CBD oils from other countries and it's legal! But I can't get it right here in my own country where I know the oil is organic, tested, and safe? Where's the logic? This has to change for all our children. Kentucky deserves more and the only reason that this isn't legal is unfounded and just plain ignorant. Times are changing and we don't need to be the last state to adopt something that makes plain sense.

Suzanne:

How does physician involvement work? Does a general practitioner prescribe and then a neurologist tracks progress? How do they know when it is time to increase the dose? And how do doctors know it is time to reduce other anticonvulsants?

Crystal:

In Colorado a pediatric patient must be seen by two recommending physicians to get a medical marijuana card. Once you have the approval of two physicians you submit an application to the state along with a $35.00 registration fee. The next step begins with finding a dispensary that has high CBD product for purchase. We are on the Charlotte's Web Realm Oil. It has the highest CBD I've seen. The oil is made by the Realm of Caring Foundation and each batch is tested by Cannalabs for CBD/THC levels before distributed. The cost for the oil is 5 cents per mg of CBD. Currently we are up to 70 mg a day CBD, so roughly $3.50 a day.   There are several neurologists here that follow MMJ patients with dosing, lowering other medications, scheduling blood work, and arranging EEGs. It's quite amazing the support you'll find here. This could easily be replicated in any other state if the correct barriers are removed that are preventing research of this plant.

Currently, there is an orphan drug of pure CBD that has gained FDA approval for trails in the United States. It is called Epidiolex(c) produced by GW pharmaceuticals but the trials are small and what I can find are already full.

Suzanne:

That sounds like a similar process to how we already titrate our kids up and down on anticonvulsant medications.

I am not opposed to pharmaceutical companies making cannabis extract medications, especially since that could eventually make them more accessible and reduce costs. However, I know how these things typically go. They don't do whole plant medicine. They isolate compounds from the plants in labs and turn them into synthetic drugs.  But, whole plant medicine works by entourage effect, where various compounds operate in synergy to produce the desired medicinal effects. Isolate the compounds and it doesn't work as well, with side effects to boot.

There are already cannabis based pharmaceuticals on the market like Marinol. My father took it for cancer related appetite loss. I don't hear anyone claiming Marinol as a magic bullet for pediatric epilepsy like Charlotte's Web Cannabis Oil. Maybe this Epidiolex will be different. I hope so.

We will update you again on Charlie's progress once he hits full dose.

Help Us Access CBD oil in Kentucky

1. Kentucky residents: call the legislative hot line at 1-800-372-7181, give your zip code, then tell the operator to ask your senator and representative to support legislation to legalize CBD for autism, epilepsy, and other conditions it is known to help. 

2. Sign our petition here.

3. Send your email address to Suzanne at cbdoilky@gmail.com. Action alerts will occasionally be sent.

Allow CBD Oil in Tennessee for Mille

Here I talk with Nicole Mattison of Tennessee. She is mother of Millie, who was diagnosed with infantile spasms. Millie is on the waiting list in Colorado for Charlotte's Web until the family is able to move. In the meantime, Nicole hopes to raise awareness about medical cannabis where she lives now. (For a glossary of acronyms used in this interview see the sidebar of this page.)

Suzanne:

Tell us about Millie.

Nicole:

She was born at term but had microcephaly and trouble nursing. At a month she still had a poor suck/swallow, was refluxing all the time and had tracheomalacia, which was exacerbated by the reflux, so she had lost a lot of weight. They did their first EEG then and things looked normal. They decided at two months to do a nissen procedure to stop the reflux and to insert a g-tube to feed her. Two weeks after the surgery we noticed the first spasms.

When she went in at three months old, they confirmed infantile spasms. They started the Ketogenic Diet in June of 2012, as well as Trileptal, Topomax and Keppra. We kept a notebook on the frequency of spasms and by December they were still at a high frequency, so they took her off the Trileptal and switched to Sabril. Neuro decided to bypass ACTH as she is not immunized, I did not have an issue with this as they felt Sabril would work.

We decided to try other neurologists as ours in Tennessee had no idea what was going on with Millie since all genetic testing came back normal. They called her a puzzle. She had trouble on the manufactured Ketogenic Diet. She wasn't gaining weight or growing, had terrible diarrhea and spit up (which they attributed to her neurological status).

One of our alternative therapist recommended a natural form of the diet. I asked our nutritionist about it and she said they have a few kids on it (which I could not believe wasn't the first line they would recommend!!), so we switched. At this time we had pushed the ratio up to a 4.5:1. When we switched to the natural diet an amazing thing happened - she started GROWING!! and gained LOTS of weight! Her body just hadn't had nutrient rich food to feed it!!

Another thing happened about a month after the switch. Millie's electrolytes started getting out-of- whack. Over the course of a few days she started swelling and wheezing. We assumed she was having an allergic reaction to something so we went to the ER. They did some blood work and found her Sodium was at 108, which is critically low! It took some time to stabilize her. The Pediatric Intensive Care Unit doctor said he had never seen a sodium level that low and we should be thankful we brought her in when we did.
 
June through August consisted of four PICU stays and one General Floor stay. After being sent home from the sodium incident, we wound up back the next day because something was just off. Her heart rate was extremely high. However, the ER docs basically told us: "Look, she has neurological issues - just accept it.", and then he discharged us. But I KNEW something was off and pressed for an overnight observation. We found out she had a staph infection from the pic line.

They had her on several supplements: sodium, magnesium, calcium, potassium and iron. They urged us to switch back to the manufactured diet as it was "fortified with plenty of nutrients she desperately needed", but I knew this just didn't feel right. I knew the real food she was getting was good for her, as was evident by her growth. There was something else going on.
 
The supplement didn't have the impact on her electrolytes they had hoped for and she started becoming anemic. She needed nine blood transfusions over the course of the three months, continuously spiraling into metabolic acidosis. They started reverting back to her neurological condition and speculating her brain just couldn't regulate her kidney function. Her creatinine levels were high (I knew deep down that there was something else attributing to these occurrences. I always had.). We stopped the Topamax at this time at my request. The doctors thought it might be causing the acidosis and wanted to start her an another medication to help. It made NO sense to me to add another medication when we could STOP this one!

All summer she stayed swollen, I think we were at home for a week and a half at the most. In August we went to the Emergency Room for blood work, as recommended by our pediatrician after a follow up from our hospital release. It was a Friday. Her blood work was off, but they felt it could wait over the weekend, as we had a hematology follow up scheduled Monday morning. We knew we would be admitted that Monday. And we were.

There was blood in her stomach. She had not peed in over twelve hours. Her blood work showed she was dehydrated, though she was as swollen as we had ever seen. Once we were admitted in our room (on the general floor) things went from bad to worse. She coded; stopped breathing. It was the most horrifying scene: her laying there pale and so bloated, the team just flopping her around like a toy trying to get some response. They needed to intubate her in order to get a central line in and get blood work, but she was dry as a bone and not giving blood. Once they did that her PH level came back as incalculable. This was the first time several in the Pediatric Intensive Care Unit team had seen this. Her kidneys had shut down and she was in severe metabolic acidosis.

The next few days were a blur. The goal for her blood pressure was thirty-five! Thankfully it went up daily and she continuously improved!

ALL that to say that as of today, we not on any of the supplements and her kidney function has returned to normal!  It was very frustrating to me that they continually wrote off her issues as "neurological manifestations", when ALL they had to do was set that aside and look at her as a NORMALLY FUNCTIONING infant!  Problem solved!

Back to the spasms: she is on 2,000mg/day of Sabril (enough to treat an adult). We just increased it as there has been no improvement in her EEG, however the Sabril has decreased her alertness and ability to interact and progress. She was spasm/seizure free for about nine months, but they recently came back right before October.

She is doing a GREAT job at physical therapy, holding up her head and sitting for a bit. She just started feeding therapy (all things the docs said she would never do).

My husband watched Dr. Sanjay Gupta's CNN documentary on medical cannabis this summer and mentioned it and I thought, "DUH, pure nature!". We asked one of the doctors at the hospital we had built a rapport with and he was all for it, so we started looking into it. We mentioned it to our neurologist in Cincinnati last week and she said its worth a try.

Though her spasms/seizures may not be life threatening at this time, I believe the side effects of the chosen treatment of infantile spasms/epilepsy nearly killed her and that should not happen when there are other possibilities.

Suzanne:

Nicole, I am so sorry. I cannot fathom the trauma of all that.

We've had to juggle the problem of epilepsy medication side effects, too. Alex was on Prednisone for two years. We all know what that is and why long term use is dangerous. He gained too much weight on Depakote, so we switched to Topamax. On Topamax he has less appetite and is at risk for kidney stones. Plus, Topamax has that acidosis risk you mentioned and Alex has two heterozygous genetic mutations that put him at greater risk for acidosis anyhow. It is like being on a roller coaster that you can't get off.

Even though you plan a move to Colorado so Millie can access the oil you have been quite busy laying groundwork at home in Tennessee. Tell us about that.

Nicole:

We are working with a few organizations in Tennessee. Education is key. There are still a lot of citizens that don't assimilate the medical benefits of a cannabis because all they have heard for years is the "war on drugs" aspect of marijuana. Therefore, we are working closely with NORML TN as well as a non profit they have created, Tennesseans for Compassionate Care. Both are working with a lobbyist to make sure we are being heard on Capitol Hill. In conjunction, we've planned a few awareness events. We are planning an event in which we take all the names of those we have lost and those currently struggling with conditions in which MMJ would benefit and will be making posters to put up in Legislative Plaza. We are looking into a mainstream advertising campaign in local papers and tv ads. We are also trying to gather a panel of experts to do a public forum, invite the public to listen to the panel and bring their questions. Again, all of these are to raise awareness and educated on the proper usage of MMJ.

We are also trying to get the word out in any way possible. We did an interview with our local Fox affiliate after the NORML TN monthly meeting and hoping that gets on air this evening so we can share it!

I think that, like Millie, there are other children that mainstream medical professionals just aren't sure how to treat and these children are getting tossed aside because there are not enough "resources" to invest into their care. That being said we've always gone a more holistic route for all of our care needs so I firmly believe that our past experiences are what has led us to investigate MMJ.

Suzanne:

It really is a public relations campaign to change entrenched biases against this plant and its uses. Thank you for sharing your family's suffering. It is important to get these stories out and I admire your bravery in doing so. Best of luck to you.



How To Help The Mattisons

The Mattisons have set up a fundraising page on You Caring. Money raised will cover costs associated with their move to Colorado. In Colorado Millie will be prescribed the Charlotte's Web CBD Oil she cannot get at home in Tennessee.   


How To Help In Tennessee

1. Contact you legislator and senator. Enter your zip code and this page will direct you to them. Ask them to support medical cannabis.

2. Contact Tennesseans for Compassionate Care and ask how you can help.

Dr. Stephen Davis, PhD on Charlotte's Web Cannibidiol Oil

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The following is an interview with Dr. Stephen Davis, PhD. Dr. Davis earned his Doctorate in biochemistry from The University of Louisville in 1993. He did two years of post-doctoral training at the National Institute of Drug Abuse in Baltimore studying the interactions of cocaine with brain receptor d. After that Dr. Davis returned to Kentucky to work on identifying genetic components to human diseases.

Dr. Davis served nearly thirty-two years in the National Guard of the United States, attaining the rank of Lieutenant Colonel before retiring in February of 2013. He served multiple tours in Washington   D.C., in support of the National Guard Civil Support Teams (CST) program. Dr. Davis was the CST program manager before returning to Kentucky to command the 41st Civil Support Team. In D.C.  Dr. Davis worked extensively on policy matters including executive and legislative changes to improve the CST program's support to the American people.

As an enlisted Airman he was a photographic technician. Over the years Dr. Davis went on to other assignments including Afghanistan, Detailed Inspector General, Regimental Adjutant, National Guard Bureau Science Officer, Chemical Officer, and Company Commander. He was awarded the Bronze Star and three Meritorious Service Medals.

Stephen is also uncle to my son, Alexander, who has Regressive Autism and epilepsy.

**Note: the terms Charlotte's Web and Alepsia will be used interchangeably in this interview. They are both names for a specific strain of high CBD/low THC cannibdiol oil. For a glossary of terms and acronyms used in this interview please see the right sidebar of this page.

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Suzanne:

How did you become interested in Alepsia (Charlotte's Web Cannibidiol Oil)?

Dr. Davis:

My initial interest was not in Alepsia specifically, but in affecting behavior through pharmaceutical intervention.  My inspiration came as a teenager in observing that alcoholism was prevalent in certain families.  I thought that there was perhaps a genetic component which could be addressed with
pharmaceutical intervention like any other disease, so I was inspired to get a doctorate in biochemistry so I could develop the capacity to help.  I first became aware specifically of Alepsia when I saw your testimony to the Louisville
Metro Government on Facebook.  My training and research provided a context for me to look more into Alepsia, which I am convinced needs to be rigorously studied.

Suzanne:

What have you read concerning Alepsia that convinced you it warrants further investigation and for what conditions?

Dr. Davis:

Two things. First, all the reports of severely epileptic children who have taken Alepsia and experienced miraculous relief of nearly all their seizures. As a person, you can't help but be curious that a plant extract could be so powerful.
If it is, it would be unconscionably cruel to withhold Alepsia from everyone who would benefit.  We can only learn who will benefit and what is the specific therapeutic component, or components, through rigorous scientific research.

That alone would be enough, but there are also distinguished scientists who believe in Alepsia.  Physician-scientists in academic settings. Society, unfortunately or not, is all too ready to relate children's recovery to the parents' hope rather than the therapeutic agent.  We don't so easily dismiss
trained, experienced, knowledgeable professionals.

As for what Alepsia is suitable to treat, only the research will tell.  The obvious place to start is epileptic seizures.  With the available information it is reasonable to study Alepsia's effect on autism, Traumatic Brain Injury, Post Traumatic Stress Disorder, and perhaps other late onset brain disorders.  Alepsia could potentially help a whole lot of people from children to veterans. There is no doubt we need to answer this question.

Suzanne:

In an ideal world how would you see the future of Alepsia unfold in Kentucky in terms of both scientific research and the ability for epileptic children to access the oil?

Dr. Davis:

Not to be flip, but science is about the real, not ideal. While ideals do inspire us, the real can be measured, assessed, improved, and prescribed.  The starting place is to establish Alepsia's safety. Once that is done, the next step is defining its therapeutic range and delivery methods.  Then standard
clinical research moves to large scale studies to validate effectiveness. On the positive side, this process ensures safety and efficacy. Unfortunately, for new candidate drugs, the process is excruciatingly slow for families looking for
relief as wide availability can be months or years away.  Alepsia, however, is not new.  The timeline can and should be shortened based on currently available information. Most importantly, there have been significant numbers of epileptic
children taking Alepsia with dramatic relief of seizures. Secondly, Alepsia's ingredients are well characterized, and there is no evidence of unacceptable side effects. My conclusion is that legal and social barriers to the availability and study of Alepsia must be removed.

Suzanne:

There is some discussion regarding the classification for THC levels in Kentucky's hemp law. Any cannabis sativa containing under 0.3% THC is now considered a hemp allowable for research purposes. Some of these high CBD strains might fall into that category, or if they do not now they can be bred that way. Therefore, it could be legal
for certain strains to be grown in Kentucky. How might such research best be designed, say, for epilepsy and/or autism?

Dr. Davis:

Perhaps I got ahead of the questions, but I described the research concept in some depth in the previous question. I will decline to address legal strategies for producing or obtaining Alepsia  in that I am not a lawyer. What I do know is that Alepsia contains THC levels so low that the Alepsia does not
result in any effect sought by recreational drug users.  I also know that cocaine, a drug which I have studied and published papers in scientific journals, is a widely abused recreational drug.  No component of Alepsia is know to be addictive, and no person has ever been documented to have died from using
any component of Alepsia. Cocaine on the other hand is clearly addictive, clearly dominates the lives of its addicts, and clearly kills people who abuse it, in some cases the first time they use it. But cocaine does have a legal medical use where Alepsia still has significant legal barriers in most states. As a voter and taxpayer, it is easy to emphatically say that Alepsia's legal barriers must be eliminated.

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Dr. Davis currently serves as proprietor and sole member of small town, Big Ideas, LLC (stBI). stBI is dedicated to helping others achieve their full potential through mentorship, training, and education. Dr. Davis is also Chair of the Kentucky chapter of USA Cares, training officer for the Oldham County Hazardous Materials Team, and is co-owner of Davis-Harbridge Homes. He lives in Oldham County, Kentucky with his wife of thirty-three years. They have two adult children and three grandchildren.