De-stigmatizing a plant for suffering children everywhere


Saturday, December 7, 2013

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








Health and Welfare Committees - Kentucky House and Senate, Majority Leader Greg Stumbo, Governor Steve Beshear: Sponsor a bill in 2013 to grant autistic and epileptic children legal access to cannabidiol oil (CBD oil).


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.

Friday, December 6, 2013

Allow CBD Oil in Tennessee for Mille

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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.


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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.


Tuesday, December 3, 2013

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.










Saturday, November 30, 2013

Campaign to Access CDO Oil in Kentucky for Autism and Epilepsy: Update 11/30/13




OUR STRATEGY AS OF NOW



Progress Toward A CBD Oil Bill

Myself and The Byrds have been hard at work contacting representatives and senators in both chambers of the Kentucky legislature. We hope to gain sponsors for a bill allowing Cannibidiol Oil in Kentucky for autism and epilepsy. Some have been open and receptive, promising to look into the issue, but as of today still no sponsor. We need a lot of help with calls to the legislature. I will post specific information about that on our Facebook page over the next few days. We will continue fighting until the last possible moment for a CBD oil bill this session. Our children deserve no less.

Special thanks to the legions of Byrd family supporters who seem to drop everything at a moment's notice to call Frankfort whenever asked. Without them we wouldn't be on any politician's radar right now. Period.

The Hemp Angle

Our state's hemp law classifies any cannabis sativa plant under 0.3 THC as a hemp that can be grown for research purposes. Some of these CBD oils meet that benchmark. So, we are wondering if the law already makes access to CBD oil possible here because at this point it is fundamentally a hemp. Would we just need a joint resolution somewhere allowing for extracts? We intend to find out.

An Autism and Epilepsy CBD Oil Study in Kentucky?

We are also working with another group to ask the Kentucky legislature to allow one of our local universities to study CBD oil for autism and epilepsy. We are not seeking funding, only for them to allow a study to happen on Kentucky soil. That way if an opportunity arises the permission is already granted. I will update progress on that front as more information becomes available.

The Medical Cannabis Bill

We also support the broader medical cannabis bill that will be introduced over the next few weeks. We see this as not only an opportunity to provide our children with safer options, but as a means for Kentuckians ill with other conditions to get what they need. There will be hearings for the issue in Frankfort on December 18th, 2013. We need as many parents there representing their sick children as possible.

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Commentary from Suzanne

I don't want to be doing this. I never cared about cannabis. I rarely even drink caffeine or alcohol. I would rather be sitting on the sidelines watching my kid play sports or planning a family vacation. I certainly wouldn't be working my guts out for this if I did not believe it could be my son's best chance at a stable future. At first that was my only motive. Then I saw children with intractable epileptic conditions leaving wheel chairs behind because of this oil. I read about babies with brain tumors that are shrinking because of it. No, this is not just about what's good for mine anymore. It never will be. Even if my son woke up epileptiform free tomorrow I'm in it now.

Yet, sometimes I wonder if I'm crazy for publically putting my name to this issue since the bias against this plant is so strong. What happens when I apply for a job next time and they Google my name? Will they see me as a mother trying to help sick kids or will they just assume I must be some pothead and chuck the application in the trash? I'm taking a risk, to be sure, but I'm not the only one. People from all walks of life are speaking out on the therapeutic benefits of this plant: doctors, lawyers, mothers, fathers, police officers. Our voices form a chorus that must be heard.

Yours in this Work,

Suzanne De Gregorio
CBD Oil for Autism and Epilepsy


"Would you teach your children to tell the truth
Would you take the high road if you could choose
Do you believe you're a victim of a great compromise
'Cause I believe you could change your mind and change our lives."


-John Mellencamp, Your Life is Now





Friday, November 22, 2013

An Epilepsy Mother's Loss: Jan McDaniel Speaks




This is an interview with Jan McDaniel, who lost her daughter Carrie to a seizure. When I first met Jan on my CBD oil Facebook page she spoke of her loss, while ardently advocating for the right of people to access CBD oil for epilepsy. It moved me that this woman, who has lived every mother's worst nightmare, spends her time trying to prevent the same from happening to others. Here Jan bravely recounts what happened to Carrie and shares her vision for children currently living with epilepsy.

Suzanne:

Tell us about your connection to epilepsy.

Jan:

I was so clueless. At age three my daughter had her first seizure. One minute she was pushing her baby stroller and the next she was on the floor having a grand mal seizure. All I could do was call 911. I was told they would go away. She spiked a fever. Little did I know that at age five she would have another seizure, on her birthday.

Suzanne:

How did those seizures progress as she got older?

Jan:

They didn't at first, not unless she had any I didn't see. When she turned twelve she had her next event. This happened at church. She had another one that year, but she and her friends kept it quiet for a long time. At age fifteen she had one at a friend's home. It was dark. The EMS could not find the home and she was turning blue. By the time she arrived at the hospital her midriff area was gray. They brought her back from the brink of death. This episode caused brain damage. After that they became more serious and more frequent.

Suzanne:

I am so sorry, Jan. A lot of people don't realize that seizures can cause brain damage, even in older children. Can you tell us what happened from there?

Jan:

We got her home she could not remember the day of the week. She would ask over and over, "what day is today?". This went on for months. She could not remember where her clothes went.  She had crying spells and was frustrated. She was reading many books a week and went down to not reading at all.

The seizures became more often and lasted longer each time. We had many ER visits. After a while her brain did some healing. She put up her clothes and could remember what day it was. We did tests and the doctor said the causes of her seizures were unknown. After constant ER visits her doctor gave us a narcotic to use at home and another to use if we went out and she seized.

I was afraid for her to go to her dad's.  He lived out of Louisville and it was a very long way to a hospital.

Her friends dropped off.  Some were afraid after seeing a seizure. She had me and two great dads and we were her support system. I watched her 24-7. If I heard her laughing at her TV show I knew every thing was fine, but if it got quiet I would walk through the house and try not to let her know I was watching her every waking minute. Carrie lived a very isolated life. I finally had to take her out of the school system due to no radio many days on the handicapped bus and a teacher that pushed her too hard in gym class. After school she had a seizure and woke up in the hospital screaming, "I told Mr.___ I was going to have a seizure!".

She had a home school teacher come two times a week. Life went on this way. The seizures could last fifteen to twenty minutes or longer. She was put on more and more medication but nothing seemed to work sometimes. The medicine made her so tired and she slept a lot. Sometimes Carrie was so drugged she would stare out in space as if she wasn't there it. It was so sad and heart breaking for me.

We were at our wits end. I feared she would die. The doctor suggested brain surgery. My husband, her stepdad, also had seizures and brain surgery and it helped. So, we went for the surgery locally and I don't suggest this to anyone.

We went through a battery of tests and found out she was mildly to moderately impaired.  She went for a pet scan for the surgery and it went fine. At 5:15 the next morning Carrie woke up and wanted a drink of Coke.  The nurse gave her some and Carrie went back to sleep. She woke at 5:30 and started seizing. Medication was ordered for four hours. She turned blue and wasn't getting oxygen. The doctors gave an order to put her in an induced coma. When the medication was given to put her to sleep it was more than her body could take. She began to shut down. The coma should have been ordered within a very short window, not hours, and she was given too much medication. This was a Saturday morning. My daughter was twenty-two years old. By Sunday they said she was brain dead and they needed to remove the breathing machine. It was a very hard decision I had to make. My daughter died that afternoon.

Suzanne:

Again, I am so sorry for your loss, Jan. I think of you every day. 

When we first met on the CBD oils page and you spoke of this of this tragedy I was struck by your willingness to work on behalf of others. A lot of people might want to keep to themselves after losing a child, understandably. But you are out there advocating for better options for families at similar risk. Can you tell us what motivates you to do that?

Jan:

I lived knowing deep inside that my daughter's chances of living were not good at all. I had a funeral home director come to my home one day and I was looking at caskets. My daughter overheard us talking about a pink casket called The Princess. She came in the room and said, "I want that one". I knew I could not make decisions like this if I lost her. She did have a casket, not The Princess. They change the models each year. When you live the nightmare of intubation in your living room and clothes being cut off after an ER run, seeing your child lie lifeless on a life support, wondering if she will walk or talk or even know who you are when she wakes up - it forever changes a mother .

I have been where so many parents are today. It seems Neurologists can do nothing but write out something on a RX pad. When I heard about the CBD oil I saw a light, a ray of real hope for children like my daughter that traditional medicine cannot offer and hope for children living like my daughter. If I sat back and did not tell her story I feel she would have died in vain.  And, if her death can help one child suffering with epilepsy or change the mind of one doctor, mayor, senator or one voter out there, then I feel I have done what my daughter would have wanted me to do. I could not save her from death, but we now have hope for epilepsy that the doctors cannot even fully understand with all their modern technology.

I believe with all my heart CBD oil is one of the oldest medications known to man and has been looked over long enough. It is time for society to take this seriously. We are talking about many children out there that are suffering, and parents that for once are telling stories of joy and true miracles. These mothers can still buy pink tennis shoes and pink dresses, unlike my last purchase - pink and white roses to go on a pink casket. I know this may seem somewhat harsh but I believe in reality and not candy coating anything.

 

Suzanne:

I don't think it sounds harsh at all. You couldn't have stated it better. Thank you for sharing your daughter's story with us and for your advocacy on behalf of children battling epilepsy. People like you restore my faith in humanity every day, Jan. Is there anything else you'd like to tell us about your daughter, epilepsy, or your thoughts right now?  

 
 
Jan:

 
There will always be pain and anger in my heart, but how would I have felt if this had happened on my watch? Did god spare me something my mind could not have dealt with? I miss my daughter so much and do have more of a reason to go on.

I knew that marijuana helped epilepsy in 1992, but didn't know much about medical marijuana. I can see your fight to keep your child alive or to keep him from facing long term damage. I can tell you are doing the right thing. Never give up. I fought the Louisville EMS because they carried no Valium on their trucks to stop or slow down seizures. It was not a easy fight, but I stayed faithful, wrote letters, and followed up on my letters. There was a threat made if I went to the media, but I kept on. I knew when the Captain knocked on my door one day that I was being heard: one little woman in a wheel chair that lacked a lot education. Finally, I got a call that there was Valium being put on the trucks - so please be sure there is Valium on your EMT truck if you have to call them for help.

I would like to say I am so sorry people are still going through this. One problem is people, especially in Kentucky, just don't want to open up to it or believe CBD oil can work. They also fear this drug due to much dishonesty on our government's part and it not doing the right thing.

But the public is getting wiser and stronger now thanks to the parents and Colorado for doing the right thing. I will do anything in my power to help. And, remember you are not alone. I see and feel your struggles and I understand: talk, educate, be a power house for this CBD oil. Be honest about the cost and what can be done to put this oil in the hands of people who so desperately need this. Please don't sit and do nothing. Tell your story; tell your pain. Each and every voice, letter, and face at a meeting counts. I believe the faces, the head counts, have gotten many states this medication. It is not going to happen by itself. Louisville, Frankfort, and Washington need to see a large turnout, larger than they have ever seen. Please don't sit idle.

Last of all, be patient with the medications currently available that slow down your child's brain, even when you don't feel patient. It is as frustrating for the child. Tell your child how much you love him. Those three words were said very often in my home. And, remember all a child has is you, the parent to protect him and make him feel safe. Take a CPR course. Children's gave me one-on-one free. If you don't know what to do for a seizure ask, read. All we can do is our best but in the end it is the little things that matter the most: being there, giving time and love, and now, hope for a better future.


 

    Sunday, November 17, 2013

    Allow CBD Oil in Alabama for Carly: Police Officer Dad Dustin Chandler Speaks Out



    This is an interview with Dustin Chandler. He is father of Carly, who has a rare epileptic condition called CDKL5.  Dustin is a board member of The International Foundation for CDKL5 Research. He also actively advocates for CBD oil to become a legal option for Alabama's epileptic children.

    Suzanne

    Can you tell us a bit about yourself? And can you talk about what life is like for your epileptic daughter?

    Dustin:

    I was born and raised in Alabama. I am a Police Officer in a town just south of Birmingham and I love my job. I have a typical four year old son who is as “boy” as they come. I am also the proud father of Carly who will be 3 in February. Carly was diagnosed with a rare neurological disorder called CDKL5 in 2012. Since her diagnosis we have been trying to bring ultimate awareness to the disorder since only 600-700 worldwide have been diagnosed.
     
    Carly has anywhere from 2-5 seizures per day and currently they are complex partials. Unfortunately, her mother Amy and I live everyday worrying about when Carly's next seizure might occur. Once Carly has a seizure we have to alter our day to accommodate the lethargy that follows. Just recently our four year old son started to “roll play” like he is having a seizure like his “sissy”. It breaks my heart to know my son must witness these episodes of his younger sister and then “act” them out.

    When Carly was diagnosed I looked into her gazing eyes and made the promise that I would do everything in my power to give her the best life possible. That is a promise I will keep as long as I am alive.

    The fear of SUDEP (Sudden Unexpected Death in Epilepsy) also is in our minds. 

    Suzanne:

    How does your support for CBD oil, technically a form of medical marijuana, reconcile with your vocation as a police officer? Did you always support this cause or was it inspired by the every day reality in your home?

    Dustin:

    As a Police Officer I uphold all the laws that are on the books and that most definitely includes the drugs laws of Alabama. That is something I was sworn to do and take very seriously and that stance will not change. It has only been recently that I have started to look into the positive effects that CBD’s could potentially have on Carly. Since there are no psychoactive properties, it's non-addictive and has no side effects, I began to be a vocal proponent of CBDs. You can say I was inspired by the promise that I made to Carly about giving her the best quality of life. She is my inspiration and helping other suffering children of Alabama is as well.

    I am not asking anyone to break the law nor am I wanting to break the law. I want there to be proper legislation set forth in Alabama to allow parents to explore treatment options other than traditional methods that most of us have tried and failed.

    Suzanne:

    How do you think CBD oil might help your daughter?

    Dustin:

    CBD oil has the potential to change the course of not only Carly’s life but also that of my family. It would hopefully be affective in controlling seizures and free us from the nightmare of wondering when the next one will strike.  Since there is not much known about her disorder, CDKL5, there could possibly be more extraordinary benefits we do not know about yet.

    Suzanne

    What do you want others to know about CBD oil for epilepsy?
     
    Dustin:

    I want everyone to know that CBD-oil is not going to get a child “stoned”. CBD oil is extracted from the marijuana plant and used as a medicine. I want people to open their minds and think about the thousands of children like Carly that suffer everyday and the help CBD-oil could possibly provide.

    -------------------------------

    How You Can Help in Alabama 
     
    Please watch this short video of Carly having a seizure and then take the action steps below. I know it might seem strange that I'm asking you to watch the beautiful little girl pictured above convulse in pain. You may know that seizures happen to some people out there, but until you actually see a child in their clutches that's just a concept in your mind. Yet this is a concrete reality of life for too many children.
     
    video
     
    If there is a chance CBD oil can end this then Carly deserves that chance. Representative Patricia Todd of Alabama has sponsored a bill to help sick children in that state access cannabidiol oil. If you live in Alabama please take the action steps below.
     
     
    1. Please sign this petition to Alabama governor, Robert Bentley. It asks him to support legislation allowing CBD oil for epileptic children.

    2. Contact your legislator and ask him or her to support Carly's Law in Alabama. Just enter your zip code and his or her contact page will appear.  
     
    3. Contact Dustin at info@know5.org to get involved, or visit Carly's Law on Facebook.

     


     

    Saturday, November 16, 2013

    An Autism/CBD Oil Success Story: Rebecca & Calvin


    Photo: It was done. <3

    I recently interviewed Rebecca. Her son Calvin has autism without epilepsy and takes CBD oil. Autism is not a qualifying condition under Colorado's medical marijuana laws. Calvin qualifies under the pain category.

    This story will break your heart, then make it leap with joy.

    Suzanne:

    Hi, Rebecca. Can you tell us what your son's life was like before he started on CBD oil?

    Rebecca:

    Calvin's life was very difficult.  Calvin is 15 years old, has autism, is nonverbal and has been self-injurious and aggressive since he was little. His behaviors escalated out of control in December of 2012. I'm guessing that the increased behaviors were onset by puberty. It was unbearable.

    I too, don't want to expose Calvin's most difficult times. I want to protect him but I understand the power of a testimony.

    Calvin would wake up screaming. He didn't walk anywhere, he ran, like he was panicked. He would run up the stairs, beating his head on the wall, screaming, "bath time" as he cried. He wanted a bath but as soon as I put him in the bathtub, he would scream, bite himself and beat his head on the tiled walls. Nothing I did made him content. Public schools were not an option for us. They couldn't handle Calvin, so we put him in an ABA therapy center. The ABA therapy helped, but like I said, all hell broke loose in December 2012. It was not uncommon for us to have to pull over to restrain Calvin in the mornings. He was physically aggressive with his younger brother (who also has autism) and he would beat his head on the windows so hard that the glass would push out and I could see outside.

    My husband and I would drop Calvin off and cry the whole way home. We cried but we didn't speak. We didn't have to. We knew what the other was thinking. Every autism mom's biggest fear. Institutionalization. I didn't want to institutionalize him. I wanted my baby to be home with me. I found myself having a nervous breakdown in the parking lot of his therapy center. I found myself saying things like, "I can't do this anymore, I can't help him, I can't live like this." All things that I'd thought for months, but never said. I was exhausted.

     photo calvin3.jpg

    Not only were Calvin's behaviors so out of control that we spent several hours restraining him per day, he was also waking up in the middle of the night and leaving the house. He figured out that he could climb out the window and leave - and he did. Our house backs to a four lane road and Calvin fears nothing. It was horrible. The only thing I can describe his life as, was hopeless. We were at the end of our rope. All of us.

     photo calvin1.jpg

    Suzanne:

    Can you tell us what happened to Calvin after starting Charlotte's Web? How is life different for him compared to before?

    Rebecca:

    We started with edibles. We were put on a waitlist for Charlotte's Web. It would be several week before we could begin the oil and we couldn't wait.

    When I bought the edible I was told that if this would help him we'd notice a change in about forty-five minutes. We dosed him. It was an incredible moment. My son was legal and we had the edible. Totally surreal. That faded quickly though, Calvin was screaming, biting himself, head banging, jumping up and down as hard as he could. We waited. forty-five minutes came and went. My husband and I looked at each other, wondering if this was just another thing that we had such great hope for that didn't work. An hour passed, an hour and fifteen minutes - nothing. Then, at an hour and a half after his dose he looked at me. He cracked a small smile. We waited. Calvin began to calm down. He stopped jumping, running, screaming, hitting his head etc. This was right around the time (give or take half an hour) that we'd have to take Calvin down to the basement to prevent him from hurting himself. This is when we'd have to restrain him.

    Calvin sat with us in the living room. He wasn't engaging in his 23 step OCD ritual that he had to do before entering the bathroom. Also, he wasn't asking to go to the bathroom every five minutes. He was just sitting with us, watching a video on his Ipad. Typically, he'd find a video and instead of watching it through, he'd pick a certain part and play it over and over. Not that night: he just sat nicely, watching his video appropriately.

    After about an hour Calvin took me into the kitchen and asked me for applesauce. We didn't have any and he knew that. He opened the augmentative app on his Ipad and said, "store." Then, he pointed at the front door and said, "go." I went. I was most definitely going to reinforce his language.

    His quality of life has gone through the roof. The MMJ slows him down so he can function. He's so much more focused, too. He's learned how to sync his IPad and add movies to it. Before, if it took more than 30 seconds to add a movie, he would become aggressive and self-injurious.

    Two weeks ago, Calvin wanted a song on You Tube. He was searching "animals" in his augmentative app. He kept looking at me, like he was unsure of something. Then he pushed "bear." Immediately after he started singing, "oh the old gray mare she ain't what she used to be." See, he wanted that song but because mare was not listed in the animal section he didn't know how to request it. He found the bear because it rhymes. He's problem solving!!!!!

    Suzanne:

    Tears here. Tears, Rebecca, because I understand what this means: quality of life for your boy, finally. He can finally find himself and explore his world without being subverted by electrical storms in his brain. Huge!

    What do you want people, and the medical community, to know about CBD oil?

    Rebecca:

    I'd like for people to know that MMJ is safe and effective. Initially, I was overcome with joy and heart ache. Joy for the progress that Calvin made so rapidly and heartache for everything that he had to go through before MMJ.

    For years I took Calvin to various doctors. I told them what I was seeing and everything that I reported was discounted. I told them about the pain that he experienced and everything that I said was blown off. "Your son is behavioral." That was the answer that I was given for years.

    I would report that Calvin had blood in his stools after ingesting gluten. I took him for allergy testing and was told that Calvin does not have a gluten allergy. I knew he did. Why wasn't it showing up?

    Calvin would hurt himself, I would report that he was experiencing pain in his gut. They did not listen. I found myself in a world full of moms who were treating their kids on their own because the medical community failed them. Naturopathic doctors, homeopathic doctors, DAN doctors, special diets, protocols for ingesting clay. These moms were seeing what was seeing:  real medical issues with their kids. The medical community had no answers. We tried these things with nothing to show but empty pockets. We tried to go down that road but to no avail.

    Instead of making a statement to people and to the medical community I'd like to ask a question. Why is it so shocking that a mom would try medical marijuana for their child? After discovering that we have an endocannabinoid system, why not feed it? Why is it so socially acceptable to give kids mind altering, synthetic meds that have horrible side effects? Why will doctors recommend removing part of a child's brain to stop seizures but the same doctor will tell you that MMJ is dangerous? Also, why are people so outraged about a child getting "high?" Especially, parents who have their kids on mood stabilizers, anti-psychotic, anti-depressants and benzos. Why is a man made chemical that causes a high ok? I just don't get it.

    I will not give up on my son. I will do anything to help him. This is helping him tremendously. Autism must be added to state's lists of qualifying conditions. Especially now. Autism effects 1/30 school aged boys. We need change now. I don't want to see one more child institutionalized, one more family torn apart. Since sharing my story, my inbox is flooded with people in the same situation that I was in. If you don't have a child like this, you can not possibly understand the constant state of fear that we live in. Not being able to sleep because your child is eloping in the middle of the night, having to restrain him on a daily basis. Wearing long sleeved shirts to hide the bruises and scratches on your arms. Please, have compassion on us. We only want to help our kids.

    Suzanne:

    You mentioned in another conversation that at fifteen your son was non-verbal when he started talking after beginning CBD oil. Can you tell us about that? This is very rare. The only other case of a nonverbal fifteen year old I know of who started talking was a boy who had recently begun neurofeedback therapy.

    Rebecca:

    Yes, and I'm so glad that you asked today! We adjusted our dosing yesterday, and we're seeing more results. Today, we picked Calvin up from therapy and asked him what he wanted to do. He said, "I need some things from the grocery store." This phrase was on his old augmentative device. We said, "Do you want to go to the grocery store or do you want to go to Party City?" (Every time we go to Party City, Calvin picks balloons) Calvin said, "Party City, balloons." So exciting! Not only was he telling us that he wants balloons, his cognitive language is improving so much that we can have verbal exchanges with him!

    Calvin is 14, almost 15. He is considered non-verbal. Before MMJ, he had a few words. "Pop", "all done", "go to bathroom", and an occasional "yeah". The night that Calvin took his first dose, he was watching Elmo in Grouchland. He's seen the movie 9836578 times. For the first time he started saying every word that they said, as they said it. He was singing too.

    We were so happy but as you know, we want spontaneous, appropriate language. We started getting it. We were at PT and Calvin's therapist was so impressed with Calvin's ability to cooperate. Our typical PT appointment looked like this- Calvin hitting, kicking and scratching the physical therapist, as he tried to stretch Calvin's legs. Sometimes, Calvin urinated on himself because it was so painful. Side note- Calvin was having 5-7 instances of incontinence at his therapy center, per week. He has not had one single instance since he started MMJ, two months ago!

    Back to PT- Calvin was doing so well since the MMJ. His therapist was so impressed. He looked at Calvin and said, "Man, you are doing such a great job, Calvin. I'm really proud of you." Calvin looked up at him and said, "thank you." Clear as day! We're seeing this daily. He started saying "no" too. That has made things so much easier. He has several new words and we're only two months into MMJ. My favorite, was day 13. Calvin woke up and came into the living room to sit down. I was walking to the back door to let the dogs in. Calvin and I locked eyes. We smiled at each other and he said, "love you." I waited 14 years for that!

    Editor's Correction: 4/10/14

    Though this interview focuses on CBD, it has been brought to my attention that Calvin also takes a full cannabis oil strain. It takes both to impart these benefits to him, as is anecdotally the case for many children with autism and some kids with epilepsy, though others with epilepsy just take CBD.   

    Friday, November 15, 2013

    Why Changing Cannabis's Schedule 1 Drug Status Matters: A Conversation With Maria laFrance




    The following is a conversation with Maria LaFrance of Iowa. Maria is mother of a son with autism and epilepsy. Since CBD Oil is not yet legal in Iowa her son has not tried it.  Maria ardently advocates for the legalization of medical marijuana in all fifty states.

    Suzanne:

    Tell us what you think is the most effective strategy toward legalizing CBD oil for these medically fragile and chronically ill children?

    Maria:

    Ok, wow! Well, there are differing trains of thought on how best to get patients legal access. Some people say focus on your state, others think federal re-scheduling will solve this faster. I have my bets on federal, but I haven't ignored my state. And then there are people advocating for only high-cannabidiol CBD oils vs. the people wanting high psychoactive antioxidant THC for cancer vs. the full-on "legalize it all" recreational users. Then there's people who've been wanting this for years who may be a bit justifiably cynical, but they need to be supportive of new people's efforts, like yours and mine.

    All of these differences in opinion tend to spark animosity among people who all want access to medicine. I support all of these efforts, I say try whatever works and see if it sticks. We need to work together. Any form of legalization in any state or region helps children and sick people. Full legalization sounds scary to some, and that's not my fight, but Colorado, Canada, France, Israel and other places where its legal haven't gone off the deep end, and their kids get medicine.

    In the realm of justice and righting wrongs, federal re-scheduling out of Schedule I must happen, because Schedule I is for drugs that have no accepted medical benefit with high potential for abuse, which is why I started the petition after reading the Gallup poll and researching the evidence.

    I'm trying all angles. I called and wrote all the news, and since they didn't reply, I made a YouTube video, and sent it to legislators. Since they didn't respond, then I started calling. Wow, the power of the phone and face-to-face trump email. Every politician I've talked with (I'm just getting started on that) has been polite and responsive. And they have told me that they don't hear from their constituents enough on this issue.

    If a state is lucky enough to have a bill, or even if it doesn't, it's good to call on experts from other states for help. Our state is hosting another state's MMJ policy director to talk about how such a program might be set up. And moms are getting involved, and politicians know better than to cross a mom. Thank you, for getting involved, Suzanne.

    Of course, the fastest way to get legal access is to move to a state where it's legal. But not everyone is able to move. It's not fair that families who've endured the tragic conditions of epilepsy, Regressive Autism, cancer, etc. already gave up their dreams of a typical life, and then to have to leave their home, friends and whatever life they managed to make in their own state. So we have to change this.

    Suzanne:

    Tell us more about the federal scheduling petition you created. You mentioned that it requests a change in cannabis' Schedule 1 designation. What would the replacement classification be and what would be the implications of that change?

    Maria:

    Ok. As an example, let's use some of my son's prescription drugs, Ritalin and Valium. Ritalin is a Schedule II drug, and Valium is Schedule IV. I never cared what "Schedule" they were in, and we shouldn't have to as parents. On top of that, we travel with my son and his prescriptions to lots of different states, and these prescriptions are never contested. So I'm not terribly na├»ve, but when my son's neurologist said she can't prescribe cannabis for my son, I was surprised. Looking back, I laugh at myself that I thought she could. I've heard about people using it for glaucoma and things, and I always thought they were doing it legally. So, according to the Controlled Substance Act (CSA), the Drug Enforcement Administration (DEA) determines Schedules I through V substances based on criteria such as whether they have a currently accepted medical use in the US and their relative abuse potential and likelihood of causing dependence when abused. Marijuana is Schedule I, the classification schedule of having no accepted medical benefit and a high potential for abuse. Meth and opium-derived medications are Schedule II. Shocking, right?

    There are three ways that I can see to reschedule marijuana, or cannabis. 1) Congress has the authority to change laws through bills, or to amend acts such as the Controlled Substance Act. 2) Any concerned body can petition the Drug Enforcement Agency to reclassify a specific drug. And 3), the Attorney General can remove any drug from the schedule if he finds it does not meet the requirements for inclusion in any schedule.

    So this petition calls to reschedule marijuana, because it has accepted medical benefit. It doesn't recommend to which Schedule it should be reclassified, because when you think about it, ANY other classification besides Schedule I allows sick patients to have this as prescription medicine without persecution. People have picked apart the wording or who specifically it should be addressing or who has what authority, but frankly, there are and have been lots of petitions to the DEA, lawsuits against the HHS, and even past petitions to the White House: maybe this approach is nicer and kinder, and more importantly, I thought the timing was right. Minds are being changed as we read this. The petition itself wouldn't remove it from Schedule I, but it could be a place where the 58% in favor can unite. And states can print off the signatures and use them as proof in their state legislature.




    Suzanne:

    Well, The American Medical Association should sign this petition then since it recommended in 2009 that the federal government change the Schedule 1 classification for marijuana. They know that this designation makes it mostly illegal for researchers to study the medicinal properties of cannabis. And since available research from other countries suggests that cannabis does indeed have medical benefits these restrictions concern the AMA. Removing Schedule 1, then, would open up many research possibilities now prohibited by law. And yet, despite this input from America's most prestigious medical body still no change from the federal government.

    How many signatures does this petition require to be viewed by The White House? And how much time is left to obtain them?


    Maria:

    The White House asks 100,000 signatures by Nov 30, but they have responded to petitions with far fewer signatures. All we need is one major news agency to adopt the petition and we'll get their attention, but people fighting this a long time are likely petitioned out. But the White House is not dealing with an ordinary petitioner. I'm going to talk with them about their clunky process and ask for more time, and explain the new reasons why. I'm not giving up on the federal route, and neither are others. There is a new petition on change.org yesterday, it had 9 signatures. So I helped him out and was signature 10. Cost me nothing.



    Maria:

    Because the government has been wrong on marijuana, many people feel their voices haven't been heard and have lost faith on this issue. But I haven't, you hear me: Mr. Obama, Holder, Leahy, Grassley, and Ms. Leonhart? I believe in you and I'm trying to get your attention!

    Suzanne:

    Though overall government progress has been slow, I think the Obama Administration has been a friend to this issue. Its decision not to prosecute medical marijuana users is responsible for our having been able to learn that Charlotte's Web helps intractable epilepsy. Prosecutions would have most parents too afraid to try the oil for fear of being arrested and having their children taken into state custody. And if they did try this they certainly wouldn't be shouting success stories from the rooftops for our inspiration.

    But in three years we will have a new president and there's no guarantee the next guy will maintain the no prosecution policy. What then? After years of drastic seizure reduction will kids with intractable epilepsy have their treatment yanked out from under them? Will parents be thrown in jail for giving their kids an oil that wouldn't get them high if they drank a pint of it? Will those children then be sent to state custody with bottles of anticonvulsants that didn't work the first time? And will doctors lose their licenses for prescribing this plant that heals? Cannabis must be de-classified from Schedule I now!

    Thank you for your hard work and dedication, Maria.

    ----------------------------------------

    HOW YOU CAN HELP

    Sign the White House Petition that requests cannabis' Schedule 1 designation be removed.



    Click here.