Epilepsy/High CBD Hemp Oil Success Story: Harper

Today I interview Penny Howard of Hope 4 Harper. Penny has had success reducing Harper's seizures with a legal-in-all-fifty-states high CBD hemp oil.



Suzanne:



Hi Penny. Tell us about Harper. What is her condition?



Penny:



Harper is our youngest daughter, age three and a half, with CDKL5 Disorder.  She was born April 12, 2010.  In hindsight there were signs of problems while in utero but with no special needs or epilepsy in our family we just didn't know. It wasn't until two weeks of age that we noticed her first seizure and that's because my aunt Marlene came to visit and gave herself the job of holding the new baby Allllll day!  Three times she noticed jerking that seemed abnormal to her so after the first two times she asked us about it.  With Harper being our second child we did not really have time to chase after her two year old sister and hold her all day so we never noticed this.  But after it was brought to our attention I held her all night and there it was:  seizure!  My heart sank!  I knew right away without a doubt what it was.  And, May 1st our lives were forever changed, never again to be the same as they had been, or even what we had dreamed them to be.  Not that that is necessarily a bad thing, because now we have a whole new appreciation for life: ours, Lily's, Harper's and how we are supposed to be living it.  A new view on our bodies, our environment and how we are supposed to be treating it.  We even saw the reality of medicine, which we completely misunderstood.  So although we are sad for the life we lost, we are grateful that Harper has come to show us the life we didn't know existed.



Suzanne:



 Is CDKL5 treatable with anticonvulsants? What has been Harper's experience with those?


Penny:



There is no AED or combination of AEDs or other epilepsy therapy (ie. Vagal Nerve Stimulator, Ketogenic Diet) that can control seizures for CDKL5 Disorder.

Those affected suffer from intense, uncontrollable seizures, sensory issues, gastrointestinal and cardiological difficulties, visual impairment, scoliosis, and severely delayed developmental growth. The severity of Harper's particular case is yet unknown, but we remain hopeful.



Suzanne:



You decided to try Harper on a high cannabidiol hemp oil that is legal in all fifty states to see if it would help her seizures. Can you tell us about that?



Penny:



After a year of hearing of the success with some trying Charlotte's Web, my husband Dustin decided to search legal alternatives and found Hemp.  Being legal we decided to try it without hesitation and were cautiously impressed with the results.  We plateaued after two months of use but even at our plateau Harper is experiencing less seizures per week/month than she had prior to starting hemp.



Suzanne:



That's fantastic! I have spoken with another family whose child experiences seizure reduction on legal, high CBD Hemp Oil and a dozen or so who did not. That can be true for any intervention. I've even spoken with a mother whose epileptic child saw no seizure reduction with Charlotte's Web. Each family has to weigh its options: if something is safe and affordable do you give it a try? It sounds like you are quite pleased that you did.



Penny:

Yes I agree. Like with any type of seizure therapy, be it AED, VNS, Diet or Hemp/Cannabis it will not work for everyone.  Just because Real Scientific Hemp Oil did not help with improvement that doesn't mean Charlotte's Web won't help you and vise versa.  For us it wasn't about all or nothing but rather improvement.  Harper is still on her AED, Depakote, while using Hemp.


We are happy with our choice to try RSHO.  I understand the concern in trying something new. When Harper was 20 months she was sitting supported, drinking from a straw cup and eating very well many foods by mouth, pulling to crawl position and really in a good place with 3 seizures per day lasting about 2-3 minutes long and none at night.  I wanted better for her so I worked with a hospital nutritionist in an effort to gain better seizure control.  Our grand plan backfired with massive debilitating seizures lasting 8-15 minutes long, 24+ times per day and night.  They were so incredibly intense - Harper dislocated her jaw.  She lost EVERYTHING including her ability to eat, and even to self sooth by sucking on her fingers.  Everything she spent twenty months working so hard to gain was lost and has yet to return all because we tried something new.  It's a risk! But I never want to say that I didn't try to do everything I possibly could to help make her life the absolute best it could be.  

 

That tragic event landed us in Pediatric Intensive Care Unit for two weeks, where I realized although Harper could physically do nothing she still understands.  That changed our focus from physical to communication.  We have spent our time helping her learn to communicate and working to get her an eye gaze communication device.  My dad always says, "we live in a world of words."  Harper's success in life will be determined by her ability to communicate not her physical abilities.  


Suzanne:

Can you estimate a percentage of seizure reduction you are seeing?



Penny:

The week prior to starting RSHO Harper had 64 seizures now she runs between 28-35 per week.  

 

Suzanne:



What brand of high CBD hemp oil does Harper take?


Penny:

Harper uses HempMedsPx Black OIl.  We recently attempted to add a high does of their Gold to her mix.  The black is more whole plant based and the gold is the black filtered one more time.  When we used this combo in the past I noticed problems when adding the gold, but I added it at a low does.  This time I went for it and added a high amount of gold and kept her black stable.  It's still too soon to determine how this combo will impact her seizure control.  But so far it's not making it worse! That's a plus! 
  

Suzanne:



What does it cost roughly per month?



Penny:

Thanks to HempMedsPx's willingness to establish an "Epilepsy Program" a sample tube runs $50 each plus shipping.  Non-sample tubes run about double/triple that depending on your preference of black or gold.  Seeing as Harper is on the small side we run through about 1 tube of black in 5 weeks.  I think gold will be about the same but again it's still too new to tell.  


Suzanne:


Has Harper shown improvement on RSHO Hemp Oil?


Penny:


I feel we saw improvement pretty quickly with Harper but I approached her use of this product cautiously optimistic.  We document her seizure activity, along with food consumption and potty in a book organized by time of day.  The week prior to starting RSHO Harper had sixty-four seizures.  The week she started she had twenty seizures and week two was an amazing ZERO visible seizures.  What I mean by visible are seizures we actual see compared to the brain activity considered a seizures that we do not see.  Harper's last video EEG indicated she has over forty plus seizures per day of which we saw ten.  After just over three months on hemp Harper has settled into about 30+/- seizures per week.  Still a reduction and we and many others have noticed more interaction, eye contact and alertness from her. 


Suzanne:


Can you please tell our readers how RSHO Hemp Oil is different from hemp oil they might find on grocery store shelves?

Penny:

PLEASE NOTE:  I am not an RSHO expert!  I am just a mom who wanted a legal alternative to medical marijuana/Charlotte's Web because we live in Texas where it is not yet legal to try. 

It is my understanding that RSHO is NOT the same is Hemp Oil you might find in your local health food store.  Hemp in the health food store is hemp oil pressed from hemp seeds and contains NO CBD. 

Suzanne:

Newcomers are often confused as to the difference between high CBD cannabis oil and high CBD hemp oil. They think we are talking about basically the same thing. Can you please explain the difference?

Penny:

High CBD Cannabis and High CBD Hemp Oil are not the same in that the Cannabis Oil comes from the Marijuana plant and Hemp Oil comes from the Industrial Hemp Plant, a "cousin" plant to Marijuana.  Similar but not the same.  Just as some find relief with Charlotte's Web and some do not the same applies to RSHO.  If RSHO is not successful for you it does not mean that Charlotte's Web will not be and vise versa.  Also, if you are finding RSHO successful would you find more success from Charlotte's Web?  I don't know? In some ways Charlotte's Web and RSHO are very similar and both considered hemp from a ratio standpoint.  What makes something hemp:  1) coming from the hemp plant itself and 2) the ratio of CBD to THC.  There is a lot of confusion in the world of RSHO and medical marijuana because of the interchangeable terminology.  

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


Harper's CBD Journey on Penny Howard's website Hope 4 Harper:


Before and After Six Weeks on High CBD Industrial Hemp


Two Months on Industrial Hemp CBD

Autism/CBD Oil Success Stories: Joshua and Nick

Here I interview Gabby from California. Her boys, Joshua and Nick, have autism without epilepsy. They are thriving on CBD Oil (not Charlotte's Web in this case).

Suzanne:

In which state do you live?

Gabby:

CALIFORNIA

Suzanne:

Do both of your sons take CBD oil or just one? Which brand?

Gabby:

BOTH. Our CBD is made locally for us, no brand - we test every single batch.

Suzanne:

How do you test the batches?

Gabby:

The batches are lab tested.

Suzanne:

How does physician involvement work in California? I'm more familiar with how it
is done in Colorado at this point.

Gabby:

The physician will ask for symptoms to treat: insomnia, anxiety, appetite, pain, aggressiveness, etc. Then he will prescribe CBD and in some cases THC.  He issues a prescription and you are left to find the oils or resins at the dispensaries.  He recommended I talk to other parents to figure out brands and doses.  And, with minors he requires to see the kid every three months to renew the prescription. All appointments must be paid in advance: close to $600 dollars.

Suzanne:

Have you seen any improvements in your sons' conditions? If so, what
specifically?

Gabby:

Both started out as very severely autistic kids. Joshua is high functioning now and Nick is on his way.

NICK: 8 Years Old





He has improved remarkably. My son was non-verbal and he started talking, pointing to things, naming all he sees, singing songs, counting in English and Spanish. Sensory issues are almost gone and fine motor is improved. He sleeps better, asks verbally for bath, food, toilet, etc. He looks at his peers and wants to imitate them. He would avoid being touched and now asks for hugs. He also now keeps his clothes on, takes pictures and draws, loves music, sings, and dances. And he lets doctors and nurses take vitals. That's new. He would scream and run away before. A different kid!

Oh and Nick is starting to answer yes and no questions. This started today. I'm telling you it's like Christmas morning every day. Can't wait to see what new thing cannabis is going to do for us!

Nick has been taking CBD and THC for three months.

I have not talked to many other parents on cannabis, but I have talked to many on stem cells. SAME RESULTS! But not as invasive or costly!

JOSHUA: 10 Years Old




My other son is also autistic and was already talking, but now he's talking better! He is asking for new food items. He would self restrict his diet. This morning he asked for scrabbled eggs! WHAAAAT! That is new.

Joshua has been taking CBD and THC only a few weeks.

Look, here they are playing together!




Suzanne:

 

This is truly remarkable, but not surprising since it is the same story I keep hearing again and again.

You mentioned that your kids also take a THC oil tincture. While epileptic kids just take CBD, I've heard time and time again that some autistic children also benefit from a THC tincture beyond the trace amounts in CBD oil. While that sounds knee-jerk-scary without more information, this has kept some children with severe autism out of institutions (here, here, and here). Can you tell us about your boys' THC tinctures? What percentage of THC is in the tincture?

Gabby:



This is my source of THC. It is only a small small dose: no bigger than the tip of a pencil. I dose it at 6:00 pm to make them unwind from the day. Promotes relaxation, gets rid of the anxiety and helps achieve deep healing sleep.

Even epileptic kids can benefit if you do micro dosing 10 g. Of full cannabis oil + 10ml. of olive oil. 1 to 2 drops 2 to 3 times a day.

Suzanne:

THC is an interesting factor with epilepsy because in high doses it can cause seizures but parents and doctors are finding tiny bits of it actually help the CBDs work better. When growers lower the amount of THC in high CBD cannabis plants to resemble those in hemp parents find the anticonvulsant properties do not work as well. It is a synergy of plant based components that I believe they will have a hard time duplicating when they start isolating CBDs to make pharmaceuticals.

Is there anything you'd like our readers to know?

Gabby:

From Wikipedia's article on neurogenesis:

"Some studies have shown that the use of cannabinoids results in the growth of new nerve cells in the hippocampus from both embryonic and adult stem cells. In 2005 a clinical study of rats at the University of Saskatchewan showed regeneration of nerve cells in the hippocampus.[55] Studies have shown that a synthetic drug resembling THC, the main psychoactive ingredient in marijuana, provides some protection against brain inflammation, which might result in better memory at an older age. This is due to receptors in the system that can also influence the production of new neurons.[56] Nonetheless, a study directed at Rutgers University demonstrated how synchronization of action potentials in the hippocampus of rats was altered after THC administration. Lack of synchronization corresponded with impaired performance in a standard test of memory.[57] Recent studies indicate that a natural cannabinoid of cannabis, cannabidiol, increases adult neurogenesis while having no effect on learning. THC however impaired learning and had no effect on neurogenesis.[58] A greater CBD to THC ratio in hair analyses of cannabis users correlates with protection against gray matter reduction in the right hippocampus.[59] CBD has also been observed to attenuate the deficits in prose recall and visuo-spatial associative memory of those currently under the influence of cannabis,[60][61] implying neuroprotective effects against heavy THC exposure. Neurogenesis might play a role in its neuroprotective effects, but further research is required."

  
Suzanne:

Thank you so much, Gabby. Every autism parent who is brave enough to speak the truth of cannabis for sick kids sends out a ripple that reaches dozens more, then some of those do the same, and before we know it we will have created a tide that cannot be turned back.

Gabby:

 I refuse to hide because I am not doing anything wrong or bad. I am not ignorant nor doing this without having done exhaustive research and being backed up by a great doctor. And, I believe it's a sin to keep all this knowledge to my self and be worried about what people think.

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


Links provided by Gabby for further reading:

Scientists Meet to Discuss Cannabinoids and Stem Cells

The Marijuana Miracle: Why a Single Compound in Cannabis May Revolutionize Modern Medicine - The Nation

Neurogenesis - Wikipedia

 

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

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


Suzanne:

How long has your family been in Colorado so far?

Crystal:

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

Suzanne:

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

Crystal:

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

Suzanne:

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

Crystal:

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


Suzanne:

Have you noticed any developmental progress beyond seizure reduction?

Crystal:

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

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

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

Suzanne:

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

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

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

Crystal:

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

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

Suzanne:

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

Crystal:

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

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

Suzanne:

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

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

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

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

Help Us Access CBD oil in Kentucky

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

2. Sign our petition here.

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

Allow CBD Oil in Tennessee for Mille

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

Suzanne:

Tell us about Millie.

Nicole:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Suzanne:

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

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

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

Nicole:

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

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

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

Suzanne:

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



How To Help The Mattisons

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


How To Help In Tennessee

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

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

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

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

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

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

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

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

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Suzanne:

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

Dr. Davis:

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

Suzanne:

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

Dr. Davis:

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

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

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

Suzanne:

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

Dr. Davis:

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

Suzanne:

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

Dr. Davis:

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

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

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

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.