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Client Spotlight

Client Spotlight: Eli

Our son, Eli, was diagnosed with epilepsy at age 5. He is currently 15 years old. He has had fine motor and developmental delays since he was born. He never had complete seizure control. When he approached adolescence, his seizures increased dramatically to at least one per week. We had difficulty controlling his seizures and his behavior became more and more erratic with the increased anti- seizure medications and frequent seizures. After more testing, we found out last year that he has a genetic disorder, which was helpful to explain many of the symptoms he has had, but upsetting because we knew the seizures would not be outgrown.

We had been following the Charlotte Figi story, and once we were aware that the hemp oil was available to ship, we decided to try it for our son. He started taking the hemp oil supplement last July, and he has been seizure free ever since! We are so thankful! He still takes an anti- seizure medication and has a VNS, but he has now been seizure free for 10 months (longest since initially diagnosed)! He has been taking the Everyday supplement.

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Stories

Let’s Talk About Epidiolex

Today was a big day in the world of cannabis. The first ever plant-based pharmaceutical drug made from cannabis rich in cannabidiol (CBD), Epidiolex, was scheduled by the DEA. You’d think it would be scheduled as a II or III because “marijuana” is schedule I (no medical value with high potential for abuse/federally illegal). Not the case. Epidiolex was scheduled as level V the lowest possible schedule – least restrictive – which legitimizes the proven health benefits of CBD and its low potential for abuse. To give you a comparison, Epidiolex is in the same category as cough syrup with small amounts of codeine and yes, it requires a prescription. The FDA approved the drug in June for two rare and severe forms of epilepsy, Lennox Gastaut Syndrome (LGS) and Dravet Syndrome. It is possible that doctors will write prescriptions “off-label” for other epilepsy conditions that can benefit from CBD.

There is a lot of confusion surrounding this topic so we wanted to clarify a few things for you. As we learn more we will update this article.  First, this doesn’t change anything for those of you who are using whole plant botanical extracts made from industrial hemp. The molecule CBD did not get scheduled today, only the drug Epidiolex. This motion by the DEA does allow for future FDA approved cannabis-derived pharmaceuticals as long as the THC limit is less than 0.1%.  CBD did not get patented, you can’t patent a plant. CBD is not illegal if you are following your state laws, plus we have the added protection from the Farm Bill and Omnibus Bill from federal prosecution. Accessing CBD is a personal decision and you should make the best decisions to improve the quality of life for you or your loved one.

Currently, there are synthetic (man-made) forms of cannabis pharmaceuticals Cesamet and Marinol on the market which are scheduled as II and III and are prescribed to chemotherapy patients with vomiting and severe nausea. These drugs are THC based, not high in CBD. If you live in a medical or recreational cannabis state you can access THC products under state laws, although it is still federally illegal with “marijuana” as schedule I.

Having Epidiolex on the market is a move in the right direction because the US government clearly recognizes the medicinal benefits of cannabis. FDA approval also means insurance companies should cover the cost because it is expected to be pretty pricey. If they don’t (and you may need to fight for coverage)this may turn into an unaffordable option.

Fun Fact:
Did you know cannabis was available as a pharmaceutical drug in the US until 1947? Then reefer madness happened and the public was largely misinformed. We are thrilled cannabis is getting her positive reputation back!

Did you know:
We are conducting the largest observational cannabis study in the US in collaboration with Johns Hopkins University. In our epilepsy population, the average dose of CBD is 2mg/kg (the range is 7mg CBD-600mg per day). The starting dose of Epidiolex is 5mg/kg. Their studies titrated participants up to 20mg/kg or higher.  It is really important to know and discuss this huge variance with your doctor.

If you found this article interesting, please share it with your friends and comment below!

[youtube https://www.youtube.com/watch?v=IJNLGIr37Ls]

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Events

Raise the Realm Day 10: Addy- Brain Malformation

Before Cannabis: Addelyn was born with a significant brain malformation that causes her to have seizures that are very difficult to control. When Addy’s seizures started at 5 months of age, we fought them with an army of traditional antiepileptic medications legally prescribed by her epileptologist. It was then we learned the dangers of these medications. Overly medicated, Addelyn basically stopped living. She slept 22 out of 24 hours each day, suffered significant developmental regression, and stopped interacting with the world around her, including her loved ones. We carried her body through life with us for months and were provided with palliative care counseling for families with a terminally ill child.

After Cannabis:
Within five minutes of Addelyn’s first dose of a high-CBD oil, she smiled. At that point, there was no doubt that this treatment option would make a positive difference in her life. Over the next year, we slowly added more cannabis to her treatment regimen and reduced the standard pharmaceutical drugs that were holding her hostage. Slowly, we got more Addy back and maintained reasonable seizure control. Addy is not “all better”, but is SO much better than she was. Today, she smiles, laughs, hugs her brother, and is even eating by mouth once again- all skills robbed from her by the traditional prescription medications she was prescribed. Her development continues to amaze us. Last week, Addy said, “Momma” for the first time and she is learning to use an augmentative communication device. She even attends preschool with her typical peers. Our family is SO thankful to have found a safe and effective therapy that has given Addy a quality of life that is worth living again.

For the latest visit Addy on Facebook

Addy

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Client Spotlight

Client Spotlight: Stacey

I started having episodes, as they were called back then (now known as seizures), back when I was in elementary school. I’m now 40 years old and still have epilepsy. It’s a constant fight and stalker in my life, but CBD oil has given me some hope. It works far better than any of my seizure medications ever have.

At my age I have completely depleted all my options, so I am reliant on CBD oil to keep the seizures at bay and give me hope for the rest of my future, so I can be around and be functional to care for my family and be here for all the family moments and moments with grandchildren. I wouldn’t go a single day without my CBD oil. It truly does help. No side effects, that’s good too!

-Stacey

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Stories

#HopeMatters Meet Paula and Jordan

Episode 1 of 7

[youtube https://www.youtube.com/watch?v=XVLnq4-Dvqs]

Tune in tomorrow to hear the rest of Paula and Jordan’s story.

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In 2013 Paula and Jordan made a decision that would forever change their lives. Leaving their family and friends in Ohio and moving to Colorado was something they never imagined. All in hopes of a treatment to control Jordan’s seizures caused by a catastrophic form of epilepsy called Dravet Syndrome.

Her seizures started when she was 6 months old and by the time she was 18 Jordan had tried a dozen different pharmaceuticals and nothing controlled her seizures. On her worst day, she would have more than 70 grand mal seizures in a 12 hour period. Jordan’s mom, Paula, was desperate to find some relief for her struggling daughter. “She’s living, but she’s living in a zone,” says Paula. Jordan was placed on palliative (hospice) care and the doctors said there wasn’t anything else they could do.

Paula heard about Charlotte Figi’s story and her success with cannabis, specifically CBD products, for Dravet Syndrome. But Paula didn’t know anyone in Colorado and thought it was crazy to pack up their lives and leave her husband and their other daughter in Ohio.

That’s when Paula said she asked for divine assistance and their path was made clear. Within a couple of months, they moved to Colorado and got started with cannabinoid therapies right away. Since then, Jordan has been able to wean off two pharmaceutical medications, one highly addictive. Jordan has improved cognitive function and better quality of life.

Quality of life matters.  You can make a lasting impact for a family like Paula and Jordan’s by donating your time as a volunteer or by making a tax-deductible donation to the Realm of Caring.  With your support, the Realm of Caring can continue to offer programs and services to thousands of families around the world who are looking for guidance with cannabis therapies.

For just $1/month you can be a RoC Friend and support families like Paula and Jordan’s. Join us today.

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Events

Raise the Realm Day 9: Mary- Pain

Hi! This is Mary, and Its been almost two years since I participated in Evolve the storytelling project presented by Realm of Caring Foundation, and I wanted to update everyone on how well I’m still doing almost two years later! For starters I’ll be celebrating my 59th birthday in a couple of months, and I’m holding steady! Better then steady actually! I’m sure most of my doctors thought all my canna meds (CW, THCA & THC) was going to be a placebo effect. Still they couldn’t deny the decrease in pain, increased mental clarity, and my 58 pound weight loss since I started taking my canna meds in May of 2014. The biggest benefit for me was getting off all my prescriptions except for 2 1/2…thyroid, hormone and blood pressure being the half. I did have a setback when my doctor agreed to ween me off my Zoloft after 23 years of use because I was having breakthrough anxiety. That Was A Big Mistake to do that right after Thanksgiving and before the December holidays and to date the hardest thing I ever put myself through. What helped me through that rough spot was upping my canna meds and changing to 200mgs SAMe, (Zoloft replacement) meditation, therapy, a wonderful husband, friends and the RoC community! Keep the faith, and when they (the doctors, the specialist, the government) tell you there is nothing they can do but pump you full of pharmaceuticals call Realm of Caring! The caring of their patients, clients, the quality of the products they recommend, and the fact that they will have your back every step of the way! I say Thank You! Thank You! Thank You! Here’s to a better quality-of-life!!!!!

Mary

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Client Spotlight

Client Spotlight: Taylor

Submitted by his mom, Stacey,

This young man has lived his entire life plagued by epilepsy since he was born and will continue to do so for the rest of his life. But this is not just any epilepsy, It’s UNCONTROLLED EPILEPSY, among other medical issues. Being born one month premature set the stage for so many of his issues, including epilepsy, Autism, bipolar disorder, depression, and anxiety, both generalized & social. He has a learning disability. He has spent more of his life in doctors offices & hospitals & asleep recovering from seizures, then he has normal activities. He is special needs due to all these issues combined. He will probably never be able to live on his own due to all this and his disabilities. This disease & medical problems, being born premature & just never having a normal life due to them has deprived him of the ability to learn and retain even basic life/ living skills. We are his advocates.

So with a lot of research & a recommendation from two of his doctors, we began using nonconventional medical treatments/therapy to treat Taylor’s epilepsy and other issues. It’s proven thus far to help, and better than what was previously being used which caused him more harm than good. Great to find an alternative therapy and medical treatments to work in his favor, but the expenses of his medical treatment are a downfall. We cannot afford it, and none of it is covered by his insurance. We struggle financially to make things work for him. He has been through so many medications (seizure meds), that he ran out of options. Meds had begun to start to show signs of making his insides “angry.” Liver tests come back abnormal in areas they shouldn’t and so he’s having to be weaned off meds and is undergoing this special treatment to address his medical problems to help control his epilepsy. The nonconventional methods have been of some help to him and more so then the medications, without damaging his internal organs.

NONE of this is covered by insurance, and so we are drowning and killing ourselves trying to afford this form of treatment, to keep him healthy and seizure free. It’s his only option at this point. We need help with these medical expenses and therapies! He’s a fighter and we continue this battle every day, without CBD oil Taylor probably wouldn’t be with us. He fights with all his might. Please like and follow his page on facebook https://www.facebook.com/taylorsfight4anormallife

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Stories

#GivingMatters Part 2 of Paula and Jordan’s Journey.

Episode 2 of 7

[youtube https://www.youtube.com/watch?v=n_Exo7qUbx4]

Tune in tomorrow to meet our next family, the Jergers, and hear their incredible story!

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We hope you feel inspired to make an impact after watching part two of Paula and Jordan’s story. Today, when Jordan has a seizure it is much less severe and overall her life has been positively affected by cannabinoid therapies. Paula is thrilled they made the move out West more than 5 years ago to try a plant-based, non-toxic option. “She’s never asked to go back home,” says Paula. They were one of the first families to relocate to Colorado before hundreds of families with medically fragile children migrated here. These families were known as “medical refugees” for leaving their home-states to try an option that wasn’t available to them at the time.

In the United States (at the end of 2018) we have 33 states plus Washington D.C. with medical cannabis laws, and 10 states which have legalized recreational cannabis, so hearing the term “medical refugee” is a little archaic, although it’s still happening as you’ll discover in episode three of this series tomorrow. It took families like Paula’s to completely uproot their lives and instigate major changes surrounding the medical cannabis stigma and legalities.

Without sacrifices like theirs, would more than half of our country have medical cannabis laws? These fearless families made a huge impact within their communities and beyond. Will you consider making an impact before the end of the year?

You’re probably asking, where does my donation go?

By donating to the Realm of Caring you are supporting education, research and grant programs. To date, donors have enabled Realm of Caring to grant more than $300,000 in financial assistance to families in need, and invest over $600,000 in first of its kind research with Universities like Johns Hopkins, Harvard, and the University of Pennsylvania studying the health outcomes of CBD and cannabis.

Becoming a RoC Friend for $1/month is the most impactful way to give. Become a Friend today.

One of greatest gifts you can give is your time! We would love if you’d consider volunteering for Realm of Caring! Read more about what volunteering looks like.

Tune in tomorrow to meet the Jerger family and learn why they fled the state of Indiana.

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Events

Raise the Realm Day 8: Luke- Autism

Our little boy who we call Baby Luke, is 4.5 years old, and the apple of our eye. He was born what we believed to be a happy handsome little boy and as parents do we loved him unconditionally.

After a few months we noticed that there were issues in Baby Luke’s development, so we brought him to the doctors. Approximately 2 years later, baby Luke was diagnosed with Profound Non-Verbal Autism, massive sight issues and a vestibular condition. We were heartbroken as we knew too well what this meant in Ireland and the hardships both Luke (and us as his parents) would have to face to get schooling, OT, speech, and language etc.

Shortly after Luke’s diagnosis, we noticed a massive shift in Luke’s behavior, not eating, not sleeping, hurting himself and others, we could see his sensory issues explode in front of us driven by the severe anxiety of his surroundings.

We, at this point, have been surviving on 3 hours of sleep a night, at our complete wits end- the continual crying, the no sleep, the violent outbursts, the self-harming- our little boy was not there anymore; he had changed, he was lost in his own mind, his own condition trapping him to this behaviour.

So, we reached out to doctors, the prescriptions kept coming but nothing worked! So at the last point, we tried Charlottes Web Advanced Solution, starting at 0.2ml twice a day and adjusting the dosage along the way. In the first night, Baby Luke slept 9.5 hours! He was 24 hours away from being admitted to a hospital by our GP for refusing to eat in over 5 weeks and what did our boy do? He started to eat ! Yogurt, apples, bananas, fries, pasta, we couldn’t believe it. We cried and cried, as parents angry at ourselves for not trying this sooner, but then tears of joy that our boy would not require a feeding tube.

The results were and still are so amazing that we had to share our story with everyone who would listen. ASD parents have to see with the own eyes to believe what it does.

We started an awareness campaign called Life Being Blue on Facebook. I would recommend any parents in Europe that are on the fence to look at the daily videos look at what it has done for our son and family! Our little boy had gone from skin and bones and riddled with social and neurological disorders, to a child that is trying to communicate trying, to learn and nearly singing! Seeing is believing and Baby Luke’s Videos are there for everyone to see!

There is nothing to loose and much to gain!

Please share our page! Education on this is key people who live with severe ASD need to realize that CW is a possible solution to regain a standard of life. And this is key it’s about potentially gaining a standard of life.

Daddy Luke, Mommy Donna and Baby Luke

Luke

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Client Spotlight

Client Spotlight: Jessie

I was a hospice nurse when a work accident suddenly ended my career and altered my life drastically. It left me disabled with a spinal injury, limited mobility, and constant excruciating pain.

It seems so silly now, but I was so scared to try cannabinoid therapy. Even though I was taking opiates and benzodiazepines around the clock to manage the pain and muscle spasms.

It’s silly because I had already tried EVERYTHING else, including a major surgery that left me in an even worse condition. But the stigma of medical marijuana frightened me so much, and a risky surgery was more socially acceptable. Deep down, I didn’t believe a plant could help me when morphine barely touched the pain.

Finally, my mom convinced me to try medical marijuana. “You’ve tried everything else,” she said, “you have to try this.” The day I started MMJ is the day I stopped taking benzos and opiates. I haven’t needed them since, and it’s been nearly two years.

The first time I used medical marijuana, the spasms just melted away and the pain lifted. I knew at that moment, this plant could give me a bit of my life back.

Now, cannabinoid therapy is not a magical cure. It hasn’t healed my spine or returned my full range of motion. But MMJ has enhanced my quality of life on a massive scale. Cannabinoids control my pain and spasms without the harsh side effects of opiates.

I’ll never have my hospice nursing career back, but I created MarijuanaMommy.com to help others buck the stereotype and try medical marijuana because this plant is changing lives around the globe. It’s time to stop fearing it.

-Jessie