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.

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





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

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.


 

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.

 

 

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.

 

 

An Autism/CBD Oil Success Story: Rebecca & Calvin

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.



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.



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.   

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 naïve, 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.

CBD Oil Success Story: An Interview Physician Dad Tom Minahan

 

The following is an interview with Emergency Room Physician, Tom Minahan. Today Tom speaks in his capacity as father of a daughter with intractable epilepsy. Well, intractable before CBD oil - that is.



SUZANNE:

Hi, Tom. First I'd like to thank you for your willingness to share this story, including your real name and profession. Like some others I've interviewed, your child already has access to the oil. You could have gone quietly on your way, enjoying the fruits of labor. But instead you bravely speak out so your voice can benefit others. I really appreciate that.

Can you tell us about your family? What is your profession? And why did you resort to CBD Oil?

TOM:

We are a family of 6 with kids ages 7-12. My wife is an emergency room nurse and I'm an emergency room doctor. 

Our 11 y/o daughter has had seizures for 10 years and as many as 30-40/month. When my daughter had her first seizure, I thought I already knew all I needed to know. After 10 years of reading, nearly every drug, diet therapy and multiple EEG's looking at surgical options, we were not any better off....in fact, the seizure frequency had increased to a number we had never experienced before.

It's my belief that 90-99% of people using weed are just getting high. While my world is skewed in the ER, that is what I saw. I NEVER saw any 'real' uses for marijuana. I was even told by people that they heard about marijuana for pediatric epilepsy....."sure, I'll teach my kid to smoke". I know drug use and abuse; I see it everyday. People get marijuana in their system by smoking....some eat it, but that's even crazier! My cousin tells me about the CNN special. Seriously? Was I that stubborn? Risk of death, zero?





Well, right before starting our well-published epileptologist said we could try cannabis ("but there's not been any studies", he said). So he suggested Felbatol. I immediately said no to Felbatol. Blood draws every 2-4 weeks to watch for aplastic anemia, a potentially deadly problem. So, deadly medicine with blood draws or this socially unacceptable "schedule 1" drug? We went forward with the safer approach and kept it quiet for a couple of weeks. But the results were too amazing to keep this quiet. I've researched this topic extensively and attended a conference in NY. Charlotte's Web is the highest quality material with the highest manufacturing standards. We're currently on their waiting list in CA.

SUZANNE:

I hear you on potentially dangerous pharmaceutical medications. For a decade an antipsychotic drug was prescribed to autistic children that was not even FDA approved for use in kids. It ended up causing some of the boys to grow breasts. Other kids developed Parkinson's like tics. The pharmaceutical company that makes the drug just settled in court for billions of dollars for false marketing. So I just shake my head when people gasp at the idea of giving kids this virtually side effect free, low THC cannabis oil that's changing the face of epilepsy as it has been known since time immemorial.

Which oil does your daughter presently take?

TOM:

We use an oil. We initially tried an alcohol based, but the taste was too intense for my daughter. We went to a glycerin-based product with good success.

SUZANNE:

Can you give us a sense of how her life before starting CBD oil differs from the way it is now?

TOM:

My daughter's life before the CBD oil, wow! We were on our way from LA to see our epileptologist in Baltimore for our one-hour appointment. We go through security at the airport and she seizes. She wets on the floor, ugh.

We're early for the flight so she sleeps on my lap as we wait at the gate. First leg of the trip is through Denver. She seizes on this leg of the flight and wets her cloths again.

As we board the next flight we ask for a towel "just in case." Mistake. Someone from the airline felt we shouldn't be in the plane, that it wasn't safe. After long delays and me talking with the pilot and the physician with the airline, we departed. As we're landing in Baltimore, she seizes for the 3rd time.
In the hotel that night, she seizes another 2 times.

Our expert suggested a different medication than the one she was on. This new medication can cause a deadly problem called aplastic anemia, so blood draws are done on a 2-4 week routine (on an 11 year-old). The expert also said, "you can try cannabis, but there hasn't been any studies." As an ER doctor, I knew the incidence of death from cannabis overdose was zero. So, blood draw every couple of weeks or try something that is "not studied" but should be safe?


Before we started, we had a private tutor do school at home. She wasn't picking up things in the regular classroom and the seizure frequency made school attendance too sporadic. She's already back in school, attending 5 days a week.. And her attitude about school is now a desire to learn! Her attitude in general has changed 180 degrees. We get in the car for church last week. As she jumps in the car she says to her brothers and sister, "good morning, how is everyone today?" Who is this kid?

SUZANNE:

I hear professionals say that all the time - it has not been studied. But, actually there are several dozen studies dating back to the 1980s, some even funded by the National Institute of Health, on the anticonvulsant effects of cannabis (here and here). So they are out there; most doctors just seem not to know about them. 

But, wow! Even though what you said about your daughter's life now versus before  CBD oil is becoming a familiar story, it never ceases to amaze me. It is the same story I keep hearing from CBD families.

What would you like others, including the medical profession, to know about CBD Oil for epilepsy?

TOM:

The medical professional community MUST know about this. How to get them to find out, is my current dilemma. I have this platform as a dad and doctor, but I need to find the right avenue. I'm no CNN reporter.

SUZANNE:

Every person you talk with, every interview like this you may do in the future, helps get the word out. These things tend to go viral.

When people from respectable professions, such as yourself and the police officer I'm interviewing next, speak out that opens the door for others to come forth. I thank you from the bottom of my heart. God bless you and your family.







 

Allow CBD Oil in Kentucky for Charlie

 

What would you do if your child had thirty seizures a week? What if those violent convulsions delayed his development, disrupting his movement and balance. What if he could barely sleep or swallow and things just seemed to get worse by the day?

Would you move heaven and earth to save him?

Crystal and Eric Byrd did just that.

This week the Byrds packed up their lives, moving from Kentucky to Colorado all for their son Charlie. Charlie has Dravet's Syndrome, a genetic epilepsy that often resists treatment. In Colorado their boy can access Charlotte's Web, a low THC cannabis oil not yet legal in Kentucky that has some kids beating Dravet's. He took his first dose last night.




The  Kindergartner takes four anticonvulsants that appear to be doing more harm than good. Crystal believes their side effects are slowly killing her son.

Though the Byrds would do anything to help their son, including move clear across the country, they are not happy about having to do so. They did not want to leave behind all they hold dear: their home, their friends, their church. They'd probably rather not have to navigate a new state's special needs services and those epically long waiting lists. They want Charlotte's Web legal right here in Kentucky so that the family can come back home. As it stands now, if they even step outside Colorado borders with Charlie's oil they could be arrested for drug trafficking. Drug trafficking an oil that wouldn't get you high if you drank a bucket of it!

Over the next few weeks the Byrds should know if Charlotte's Web proves to be a miracle elixir for Charlie as it has for other children. Meanwhile, in Kentucky advocates support legislation that could help Charlie come home. It could also grant thousands of autistic and epileptic children across the commonwealth access to CBD oil.

The Byrds will keep us posted on Charlie's progress with Charlotte's Web.



 Help The Byrds Come Home

If you live in Kentucky please take the following actions:



1. Contact Kentucky's legislative line at 502-564-8100. Leave the message for the senators and representatives on the Health & Welfare committee to support a bill legalizing CBD Oil extracts for autism and epilepsy in Kentucky.
 2. Call the legislative line at 502-564-8100. Give the operator your zipcode then ask him or her to ask your senator and representative to support the medical marijuana bill.

3.Sign the petition asking the Kentucky state legislature Health and Welfare committees in both chambers, House leader Greg Stumbo, and Governor Steve Beshear to support legislation allowing Kentucky children with autism and epilepsy access to CBD oil.

Allow CBD Oil in Kentucky for Alex

My name is Suzanne. I am the mother of a son with Regressive Autism and epilepsy. I want Kentucky to legalize CBD oil so my son and those like him can live their full potential. I don't want to do what I am about to do, though. I don't want to bare before the world my son's most vulnerable moments in life. My maternal instinct is to fiercely protect his dignity and there is nothing dignified in what I'm about to tell you. But families across this country are being told no by politicians who cannot begin to fathom what our children go through. They only know if we tell them, sparing no detail, so here it goes.



Alex was diagnosed with autism at age three. He was so high functioning that the child psychiatrist came back three times before rendering a diagnosis. All experts agreed that Alex was brilliant, so we had every reason to believe his future could still be bright. But by age six my son was severely autistic and back in diapers, with an IQ of 52. Nobody knew why.

His aggression was constant. Alex bit his own arms up and down and attacked me constantly. I couldn't work because I never knew if I'd need to remove him from school on a given day. Driving by car was terrifying because he'd pull me into the backseat by my hair as I struggled to remain on the road. Then he'd open the car door and try to jump out while it was moving. Grocery shopping was equally impossible because he'd take me to the floor by my hair as shoppers looked on in disgust. Not one person ever offered to help. To them I was just another mother who couldn't control her kid.


Clearly this child was in pain. It got so bad that he could barely function outside his home. Doctors said these behaviors were the nature of autism and there was not much we could do. When some friends suggested we rule out seizures I made an appointment with a neurologist. On the way to one appointment Alex dragged me by my hair through the streets of downtown Louisville. Once inside he lunged at my neck and missed, breaking my bra strap and yanking the entire thing off. That poor neurology intern bolted the room and brought in the big guy.


Anticonvulsant medication alone was obviously not cutting it, so they put him on Prednisone. On steroids my son's development took off. Alex grew more verbal and we got to know him on a whole new level. And most autistic stereopathy disappeared: arm flapping, verbal jargoning - you name it. I was thrilled that after years in hell my son was finally at peace. But there was a price. Long term steroid use risks osteoporosis, adrenal disease, and diabetes. We were risking his health to save his brain, which was unsustainable. After two years he came off steroids and somehow he's held up. No more rocket speed development though.


The only time we see that kind of aggression now is when he outgrows his anticonvulsant dose. When he starts having forty-five minute episodes where it takes three people to restrain him before he passes out that usually means it's time for an increase. If this is just epileptiform I'd hate to see what full blow seizures look like. I don't want to find out. My son is eleven. They say epileptic males often get worse during the teen years and puberty lurks around the next corner like a dark unknown. That's why I am in a race against the clock to get CBD Oil legal in Kentucky. I'm still traumatized by those early years and that fuels my efforts. I will not settle for break-through seizures and side effects. This is my child we're talking about. Would you?


CBD Oil is a safer option and it works. Children with epilepsy disorders even more severe than my son's are becoming seizure free and leaving anticonvulsants behind. And the parents marvel in awe how it has no side effects, because that's unheard of with anticonvulsants. My son had to come off his first anticonvulsant because it raised his liver enzymes and made him overweight. The medication he takes now carries kidney stones as a risk. He's minimally verbal. Now how is he supposed to tell us if he gets kidney stones? Enough is enough. Just give us the damn oil already!


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


Suzanne De Gregorio is editor of CBD Oil for Autism and Epilepsy. She lives in Louisville.