|Sophie and Me|
La Jolla, CA 1999
Sophie was about four years old in that picture. I was 35, and it was the turn of the century and the millennium.
Once upon a time.
I sure wish that I could have had access to CBD oil back then.
I might have avoided nearly twenty years of frustration in controlling Sophie's seizures. She might have never become addicted to the benzo. We might not have had to try fifteen more drugs (she'd already been on eight in this picture). We might have avoided the second trial of the ketogenic diet which reduced Sophie to a pacing tiger in a cage waiting for her slice of strawberry embedded in a stick of butter, her stool impacted and no seizure relief, myself a fucked-up wreck of a woman. We might have avoided a broken leg, a broken nose, a broken hand, a split-open forehead and back of head, more than twenty stitches, permanent teeth knocked out, and a host of side effects: screaming, rigidity, sleeplessness, catatonia, anorexia, stomach pain, headache, fevers, rashes, hives, irritability, ataxia, dizziness, muscle weakness, blurry vision and cognitive decline.
Tonight I learned that another family has been threatened by a pediatric neurologist at UCLA. I'm not going to use his name, but I've written about him on this blog. I've also written quite recently about my own encounter with a bully -- Sophie's adult neurologist and her superiors who refused to discuss medical cannabis with us, even after we had been doing so for nearly five years. The irony of the recent scandal going on in the USC medical school is not lost on me. Look it up if you want to hear some serious shit.
But I digress.
This UCLA pediatric neurologist's "area of expertise" is infantile spasms, the disorder that Sophie was diagnosed with in 1995. I will remind you that the treatment protocol for infantile spasms is nearly identical to the one we used twenty-two years ago with the exception of a "new" drug that is not new. It was approved by the FDA years after we used it. We tried it back in the last century at the urging of our very cutting edge neurologist because Sophie had already failed eight or so drugs in various combinations. She was nine months old. We got it from England, and we gave it to Sophie along with two other drugs. It didn't work and caused what I thought was psychotic behavior in a baby. Screaming for most of the day and night. It had not been tested, you see, on babies, and who knew whether that particular cocktail of drugs was causing more harm?
This drug Vigabatrin went off the market for a time because it can, in rare instances, cause serious irreversible vision damage. When your doctor prescribes it for your child's infantile spasms or seizures, you have to sign a waiver that you know about this risk. The other standard treatment for infantile spasms is ACTH, a high dosage steroid, administered by intramuscular injection. I believe brain surgery as a treatment has advanced somewhat, but -- it's brain surgery, and you have to be a candidate for it. You have to have a focus area to mess with in the operating room. Sophie did not have a focus.
90% of babies diagnosed with infantile spasms will have moderate to severe cognitive disability and refractory seizures. This number has not improved in decades despite "advancements."
This pediatric neurologist at UCLA is one of the several neurologists in the city, in the country, who are involved in GW Pharmaceuticals' studies of cannabis medicine and their cannabis product Epidiolex.
This pediatric neurologist openly tells his patients about CBD oil and tells those of us in the "veterans" community that he supports its use, but then he threatens families with Child Protective Services.
He is a Janus-like figure, or perhaps that is too kind.
He is two-faced.
We can only surmise that he and others like him want people to stop using what Big Pharma calls "artisanal oils" and start using Epidiolex. We can only surmise that they are -- let's say -- "on the dole" with GW Pharmaceuticals.
Follow the money, as they say. Except that these are not crumbs laid to remember your way to safety.
I will say that he is a bully. I will say that there a lot of bullies in the neurology world -- both pediatric and adult. I understand that there is a lot of fear. There is liability, lawyers, corporate policy. Medicine As Business.
I will say that we do not trust these neurologists.
I will say that there are pediatric and adult neurologists who are not bullies and who are willing to work with parent experts in a manner that is family-centered. I encourage you to leave your pediatric neurologist or adult neurologist if you are being bullied. I encourage you to advocate for full and open communication with your physicians and demand that they do the same. If they can't work with you, and you are using cannabis medicine, then they should tell you so directly and give you the choice to leave and find another neurologist. I realize that this might be impossible, so do what you need to do. You are in charge.
I don't know if there's a happy ending to this story, or if there's an ending at all. It seems, sometimes, as if we are always beginning.
Feel free to share this post with anyone that might find it helpful. I'm sorry that it pertains primarily to legal states and particularly California, but as long as we have docs averse to communication, we're going to see similar crap going down all over the country as the laws are eased.
Here are your rights and some resources:
Where to Find Pediatric Cannabis Support
Is Medical Marijuana Legal for Children in California
Patients' Guide to Medical Marijuana Law in California