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| The Third Circle of Dante's Hell, The Inferno Gluttons |
Today's visit to The Neurologist included the usual bringing her up to speed on the amounts of medication Sophie is currently on, how much of the Onfi we've weaned since the last visit and a couple of jokes about the drug Fycompa (that causes homicidal and suicidal ideation) and the drug Potiga (that causes blue lips and nails). I made the jokes, and The Neurologist gamely laughed. We also discussed the CBD and the THC and how well they're working for Sophie. She even walked in without a wheelchair! The Neurologist exclaimed. Then, apropos of nothing -- or maybe because of the homicidal/suicidal ideation and blue jokes -- she mentioned the Vagus Nerve Stimulator, a medical device that I've heard about since it was first introduced in the late 1990s when two of my friends at the time traveled to Ohio to have one put in their young children with refractory seizures. The various neurologists we've seen over the years bring it up in a sort of lethargic way, so I've never really thought of it as a compelling treatment for Sophie, and I still don't, even with what I learned today from The Neurologist -- that They've made some enhancements, namely an ability to be adjusted in smaller increments. Such is my lethargy, I don't feel like telling ya'll what the VNS is, so feel free to look it up on the Google. My mind wandered a bit when she told me about the enhancements -- toward wondering why mini-vans were first made with only one sliding door and why having them on both sides was such a genius innovation and couldn't have been done in the first place.
At worst, The Neurologist skipped over the extraordinary results of CBD and THC on my daughter. At best, she was doing her job and sharing information, and I'm grateful for that.
I'm going to call a spade a spade. Sophie's neurologist is Dr. Kalayjian. I really like and respect her. She is very supportive of what we're doing and sympathetic, always. She's a good doctor. At some point in the otherwise enervating discussion (remember that word?), she said that Another Neurologist exclaimed the other day, I need more research! I get questions all the time now about CBD, but we just don't have the research! In calling a spade a spade, I'm going to call the Another Neurologist, Dr. Heck. I've known Dr. Heck for a really long time and even sat on the board of the Epilepsy Foundation of Greater Los Angeles with her for a time and at the same table at a gala or two. She never remembers me, but that's fine. She's clearly got a large gargantuan doctor mind.™ It was Dr. Heck who summarily cut off our panel discussion about CBD last February at the Epilepsy Brain Summit. I'm calling spades, spades, when I also name Dr. Hussain as the doctor who also patronized us that afternoon and who continued to do so in private emails I exchanged with him. I believe I reached the point of no return in the email thread when I pointed out that when he was in high school, Sophie was diagnosed with infantile spasms, and that today, twenty years later, as the head of the infantile spasms program at one of the best epilepsy centers in the world, he's still using the exact same treatment (well, now we've got Vigabatrin formally approved despite it causing serious eye damage and then there's The Knife) with the same abysmal results. I might have added that it would behoove him to have a bit of humility, or maybe not. I can't remember because my tiny little mother mind™ had spontaneously combusted in the confrontation with his large gargantuan doctor mind.™
Anyhoo.
Why am I typing this out here, calling spades, spades? As I made my way through the circles of Hell that constitute the USC parking garage, mainly curse words and phrases came to mind as responses to Dr. Kalayjian's comment about Dr. Heck "needing more research." I didn't have it in me in the moment back in the office, distracted as I was by Sophie's formidable strength and drive to get up and out of the joint (no pun intended). To be honest, these phrases might have included if she and the rest of the docs got their heads out of their asses..., and f**k your godforsaken studies, and try looking them up because there are reams of them!
Reader, I was not directing these ugly thoughts at Dr. Kalayjian, as her head is decidedly on her shoulders, and she's very supportive or at least superfically so. They were directed at Dr. Heck and all the other large, gargantuan doctor minds™. Again, these thoughts only came to me as Sophie and I stumbled through the parking garage looking for our car (I am directionally challenged). When I'd finally found it and situated Sophie in her seat, given her a cold drink and turned on the engine, all curse words flew out the top of my head and what I was left with was this:
Studies? Studies?
More research?
How about Sophie?
Why the hell are you not responding to Sophie?
Here's your study!
Here she is!
Look at her!
Pay attention!
Listen to me!
Listen to others like me!
Stop blowing us off!
Stop reporting us to Children's Services!
Stop prescribing multiple drug regimens!
Be excited!
Be curious!
Take notes!
Follow our progress!
Take it seriously!
Don't dismiss us as anecdote!
Open your minds!
Remember that with few exceptions, you are no more intelligent than most of the people caring for their children with refractory epilepsy and in many cases, you are less experienced!
Your field is a dark one, and you do not have all the answers!
You missed the train eighteen months ago, and I'm giving you a chance to get on board!
Take it!
Please print this out and send it to Dr. Heck. Now. Please. It may not penetrate the Another Neurologist's Gargantuan Mind, but it might open the tiniest little crack. It might.
ReplyDeleteOr maybe it will all feel like one more thing you are supposed to do and in that case, don't do it. Fuck it. You have absolutely given them the chance. And that they didn't jump at it is their own damn fault. Fuck it.
While reading this, I thought of Dr. Semmelweis who conjectured that the washing of the hands after doing autopsies on women who had died in childbirth would help to prevent puerperal fever.
ReplyDeletehttp://www.npr.org/sections/health-shots/2015/01/12/375663920/the-doctor-who-championed-hand-washing-and-saved-women-s-lives
Some things never change. Pride being one of them.
And that's what this is all about. The pride of those people with their enormous Large Gargantuan Doctor Brains who have completely failed at what Tiny Little Mother Minds are managing to accomplish.
Don't stop raging. Do not.
God, this is so on point. The study is RIGHT HERE.
ReplyDeleteGet on the fucking train doctors!
ReplyDeleteI spoke with a patient today and we discussed how some docs, not all, but some, don't listen to patients. There are nurses that do that to sadly.
I'm glad Sophie is doing well, very glad.
Hello, doctor. Have you met Sophie? I can imagine you delivering that line completely dead pan.
ReplyDeleteSo glad to hear Sophie is feeling well. That's what I love to hear. xo
Oh, how sweet it is that Sophie walked into the doctor's office. That was really good news.
ReplyDeleteNow for the rest of it ..... that is exactly what is required - go rest. You did a lot today.
And you found your car in the parking garage, without crying. - well, as far as I know.
PS: Please forward Dr. Heck's address. I have something to tell her that she might want to hear...NOT !
This is so right on, Elizabeth. I wish you would send it in to a medical publication.
ReplyDeleteBravo. I love the way you wrote this.
ReplyDeleteIf Dr. Heck's research really isn't out there -- and I wonder if that's the case -- isn't that the fault of the federal government and its prehistoric War-On-Drugs mentality?
(I mean research aside from the obviously valuable evidence already offered by Sophie and others like her. Research in that methodical, gargantuan doctor mind sense.)
DeleteYes, the War on Drugs mentality and the draconian federal laws have prohibited research for the last seventy years in this country, but there's plenty of it done in other countries and there are plenty of doctors in the medical marijuana community who have been talking about these things for many years to no avail. I am utterly stumped at the obduracy of the epilepsy community -- truly stumped.
DeleteI wonder if you and the rest of the Moms and Dads pioneering this stuff will ever be considered as such? I think not likely,. and that is truly unfortunate. People in the real 'field', living the life day in and day out, too often remain unrecognized, as do their children, for the work they do in forwarding progressive treatment. Then later when it becomes common somehow it becomes latched to some professional who has a son or daughter with a disability, or who has a friend who has a cousin who knew a guy who knew a guy.
ReplyDeleteTruth is, at least in my opinion, there is much more to learn from blogs than journals than anyone can possibly imagine.
Brava, you! I have the same feelings every time I deal with the medical community...As to the attitudes you speak of, they are taught in medical schools and reinforced by our medical system...Patients are assumed to be stupid.
ReplyDeleteDon't even think about the VNS... Scott's got a broken one in his chest which never worked very well anyway. We went in for his standard yearly interrogation of the thing and found it was still firing, just not up his 10th cranial where it was supposed to be, just firing away every three minutes into his chest tissue. The wire attached to his brain had snapped. Of course, he never said a word to me... ;)
ReplyDeleteIt's just unbelievable (if I think about it I'll lose my mind) that these neurologists have so little compassion or concern for our kids. Gawd, you'd think they'd hear about something hopeful, let alone natural with barely any side effects, that they'd run screaming with joy down their halls. Instead they shame us. F*ckers.
Wow. I'm just seeing this today, Shelly. How horrible for your son and for you. F*ckers is right.
DeleteThis should be submitted and printed in the editorial section of newspapers everywhere.
ReplyDeleteIt puzzles me why the doctors aren't beating down your door to study why the oil is helping so much. They should be begging you for your records.
ReplyDeleteWay to go. Yes!
ReplyDelete