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.