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| art by Adrienne P. |
When we visited Sophie's neurologist last week, Sophie was brewing a cold and had had a bad day, seizure-wise. She was clammy and spacey, sat in her wheelchair for the entire time and didn't make great eye contact. She had been seizure-free for nearly two weeks until that day, and a part of me was not only bummed that I wouldn't be able to share a seizure-free child with The Neurologist but also anxious that the seizure-free period was just a dream, a honeymoon, the usual. That being said, The Neurologist was pleased to hear of the efficacy of the Charlotte's Web, and she recommended that we start to wean Sophie from Onfi, the benzodiazepine that she's been taking for years. The Neurologist is a woman, younger than I, very kind, thorough and efficient. When I left her office and drove home, I had to wonder at her equanimity, and -- by extension -- the relative nonchalance of the neurological community in general, in the face of what I believe is a revolution happening in epilepsy treatment.
It seems to me that these people should be freaking out about these kids. Yeah, yeah, I know A Scientist has no business freaking out over anecdotal reports from a patient. I realize they have to do the double-blind placebo controlled studies and protocol must be followed. Yeah, yeah, I get that. But you know what? Sophie was diagnosed with infantile spasms when she was not even three months old. Since that day she has been on twenty different drugs in different combinations and has tried the ketogenic diet twice. She's been infused with immunoglobulin fifteen times. She's been tested for all known genetic mutations that would call for specific treatments and come up negative. She has never been seizure free in nineteen years. Until now. Until a few weeks ago.
That, to me, calls for a doctor shrieking in the hallway to his or her colleagues.
What this reminds me of, though, is the day, years ago, when Sophie was diagnosed with infantile spasms by two young Fellows of Neurology. I wrote about that day and mused on whether a more appropriate way to communicate the terrible news that was let loose would have been for those Fellows to wrap us in their arms and weep for us.
Humor me.
I want The Neurologist to shriek in the hallways about Sophie and the other kids who are seeing this treatment work for their kids.
Until then, I will do so.
Seriously. Right? What is it and how do they burn the wonder out of med students?
ReplyDeleteI remember almost forty years ago talking to a doctor about being on antibiotics and eating yogurt to replace the good gut-bacteria. "Really?" he said. "I've never heard of that." And I imagine he wrote notes in my record about what a freaking nut case I was.
Let's face it- no one can care as much about our medical situations as those of us who are going through them can. And no one is going to search out answers the way we will. And I will gladly shriek through the halls for you and for Sophie and all of the children for whom this completely home-grown remedy is a miracle.
I remember that piece about the diagnosis so well. Write up this piece as its companion? And I am so happy for you and Sophie evereytime I read an update---and for everyone this new treatment is working for.
ReplyDeleteI will shriek the halls with you and for Sophie. Sweet Jo
ReplyDeleteI'm with you. I remember the first time I ever assisted on a skin graft surgery and could hardly contain my glee at the wonder of it all. The surgeon admonished me to "stay calm" even though the patient was under a general anesthetic, but later when she came back so I could remove her stitches, we squealed with glee at the healthy skin that was replacing her previously painfully adhered burn scars. I'm fairly certain the patient appreciated my show of human emotion and I never apologized for crying with a patient or celebrating with one.
ReplyDeleteI wonder what the doctor would say if you showed her this post? I wonder if she would begin to grasp that she is witnessing a miracle? Oh I hope so.
ReplyDeleteAt a recent hospital stay I was forced to come up with a current event in history...It took me a bit of time ( rough day) then I got excited and told them they are trying to legalize cbd in some states. I have to admit the lady's eyeballs got sort of big but then much to my surprise she smiled and said, " Wow, good for you!"
ReplyDeleteI am so glad it is helping Sophie.
I'm shrieking with you!!! Every day I hold my breath as I read your blog because I only want another seizure free day. I too worry that maybe its just a honeymoon period but am SO SO glad that the anecdotal evidence is mounting and that this may really be something. Something big, that certainly warrants shrieking! Also I'm so sad that Charlotte's web is in so little supply and that the demand is so great and that in the hurry to get the drug parents are trying any and all types of marijuana and not always with good outcomes. Yes we need studies and as much as it pains me to say it we need Big Pharma to step in and manufacture this so it can be placebo control studied and FDA approved, etc. Fingers crossed and shrieking daily over here, promise!
ReplyDeleteSophie has never had a "honeymoon" on any drug. As for Big Pharma -- I'll disagree. That will be the death knell of this treatment.
DeleteI agree. The minute the big companies get a hold of it, there will be more trouble accessing it, it will cost more and they will mess with it so that they can "own" it and it will never be the same again. We are waiting for this in Canada. When it gets here, I will be in line for it for my own Sophie. As for our neurologist...dismissed the effects as "hype". Canadian neurologists are notoriously conservative and rigid thinkers. Odd...considering human neurology defies all of that. In any case, I will take the "anecdotal evidence" of a hundred real parents over one "controlled study". The funny thing is, if ANY of THEIR drugs were having this sort of impact, you can sure as hell bet the drug companies would be shrieking something!
DeleteI DO hope that doctors are giving medical marijuana serious, objective evaluation rather than being put off its possible use by a lot of FDA/DEA/justice department bullshit. And THEN I hope we're in a position to continue changing laws to make these products and treatments more widely available.
ReplyDeleteMeanwhile, SHRIEK SHRIEK!! That's great! :)
Shriek Shriek yes!!
ReplyDeleteI wonder what the big deal is about showing some emotion. What's happening for Sophie and others did not come from them (the neuros). Is that the issue? I don't get it, but it's weird. Meanwhile, we all shriek on.
ReplyDeletethis seems very good news, even if the doctor is cautious and doesn't shriek jubilantly.
ReplyDeleteShrieking right along with you! I remember when we went through the agonizing testing to determine the eligibility for my daughter to get surgery to remove her seizure focal point. It seemed to me that the balance of our lives hinged on it. When they said yes, I started weeping. I really cannot remember who delivered the news or what his or her reaction was… It did not match mine. The surgery helped but didn't cure, and now we are anxious to try Charlotte's Web too. Thank you for your blog. I get it.
ReplyDeletei think the medical world breeds shrieking, hugging, weeping out of all but the most exceptional practitioners. and i think this has been tolerated under the guise of objectivity or 'hardening' oneself to the day-in, day-out pain and suffering that makes up a large part of their landscape. there's got to be a different model. i have run across a few medical people who were capable of responding with joy and sorrow and not just studied equanimity, and in their irrepressible humanity, were true healers.
ReplyDeleteI'm here with everyone else shrieking my ass off.
ReplyDeletewv: GREATEST :)
adding my shrieks along with everyone else here.
ReplyDeletealways.
I am thrilled for you, for Sophie, and for everyone else who will be blessed by this treatment.
ReplyDeleteThe comments here about the lack of expressed emotion among medical professionals made me emotional! Those of you who are interested, please read Dr. Rachel Remen on the subject - she is a modern-day medical prophet on the topic. Her course, "The Healer's Art" (now being taught in medical schools around the world) is designed to address this very issue. I still have hope that my book might help, too...
Like everyone here, I'm shrieking for you. I sure hope some of these doctors are at least going home and shrieking. Because of the many benefits of the high CBD product I would love to grow it. My county has horrible enforcement policies which would be a problem. I would need a license too. All of those things are minor compared to the importance of making more available. Now that I've got some breathing room with my mortgage, I need to research this and consider. Is it okay to post this here? If not, please do take it right down. Much love.
ReplyDeleteLet's talk!
DeleteI remember your post about the initial diagnosis/interview ... I don't get the human disconnect at all ... Maybe it's a required course in med school ... Pedestal 101
ReplyDeleteAs a starter, let me say I was opposed to medical marijuana, not really my fault, the only people I knew supporting it were potheads that just wanted an excuse to legally get high. When it passed, my first impressions were confirmed...for a while....And then I started meeting the people that weren't potheads, people that were legitimately using it for medical purposes, taking pills, not smoking, and getting real results, adults, kids, on the computer, in person..... I've said it before, I'll say it now....I was wrong, at least in part....and when I hear of your success stories I too will shriek in the hallways!
ReplyDeleteShriek! I love this update, and all your blog posts.
ReplyDeleteUnfortunately a GW Pharmacuticals are sneakily coming out with a med using cbd, coincidently right after these charlottes web miracles
ReplyDeleteI will help you shriek everywhere til we get there with my grandson. I remember the first eeg...
ReplyDeleteI'd say so!!!!!
ReplyDeleteMy mother-in-law was (mis)diagnosed as having Creuzfeldt-Jakob Disease, better known as Mad Cow disease, back in the mid 90's. Misdiagnosed by a small hospital in Decatur, Il, who sent that info on to the larger Springfield Hospital, who agreed with the diagnosis, even though, back before great internet access, I showed them several research papers that contradicted their diagnosis, so we took her to the Mayo Clinic and (naively) asked Springfield not to send their diagnosis, but they did, and Mayo gave her the same very grim diagnosis. The doctor suggested we take her off feeding tubes, which we refused to do. Several days later, she woke up - WOKE UP! She knew all of us and was cognizant. When we left Springfield they had set up a follow up appt for 6 months later - I'm sure thinking she would never be there, since death is likely within months once diagnosed with this disease. When my mother-in-law and father-in-law walked down the hall to the doctor's office, the doctors couldn't believe it! They actually did shriek! And kept bringing other people in to see her and ask the same set of silly questions (what day is it, who is the president, etc.) They kept calling her a miracle (because their diagnosis couldn't be wrong!). Still we appreciated their joy. And I truly wish it for you someday. But know that your readers are thrilled for you and Sophie.
ReplyDelete