Wednesday, May 27, 2015

The Good Neurologist: A Story of Gratitude

Sophie understands it and thinks it sucks.


The Good Neurologist is happy to see Sophie bright and attentive and walking on her own into her office instead of slumped in her wheelchair. The Good Neurologist acknowledges how wonderful her patient looks.

The Good Neurologist apologizes for Sophie's traumatic EEG from a couple of months ago and realizes that it wasn't a great example of Sophie's improved clinical presentation. She is happy to report, though, that there is no ESES on the EEG. ESES is short for electrical status epilepticus in slow-wave sleep, and Sophie has had two bouts of it in her life, both devastating and too traumatic to recount here. The Good Neurologist is also understanding of the mother's aversion to learning what was on that EEG and decides that we don't need to do any more for a really long time.

The Good Neurologist takes notes while the mother talks, and she asks questions about how Sophie's CBD is dosed. She is appropriately excited by the mother's report of relative seizure freedom since going back on the original California Charlotte's Web.

The Good Neurologist is genuinely interested in hearing the mother discuss what types of cannabis Sophie has tried, how well they've worked or not. She takes notes.

The Good Neurologist listens avidly and carefully as the mother tells her about the disastrous epilepsy conference where the mother was insulted by The Good Neurologist's colleagues. She doesn't flinch when the mother names the offending parties and says, I was enraged by it for a while, but my overall feeling now is that I don't give a damn what the neurology world thinks.

The Good Neurologist is able to do a sort of mind meld with the mother so that the mother understands that The Good Neurologist is very excited about this new treatment for Sophie, even though The Good Neurologist is unable to jump up and down and scream into the hallways because some of her colleagues are assholes and might not approve.

The Good Neurologist has big brown eyes that widen when the mother reports how much of the hated benzodiazepine has been weaned from Sophie. She is very, very impressed. She acknowledges this achievement. She provides encouragement to keep going.

The Good Neurologist speaks to Sophie and is warm and engaging. The mother and Sophie leave the office of the Good Neurologist and drive through afternoon traffic without crying or seizing, respectively.

The End.

23 comments:

  1. What is the "Original California Charlotte's Web"? Is this grown in CA by Ray or is this a product from the Stanley brothers? What is the difference?
    Catherine

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    1. Catherine, this is Charlotte's Web grown in CA by Ray. We tried CWHO (Charlotte's Web Hemp Oil) for a quite some time, but it wasn't as effective for Sophie. It helped her, but we haven't had the same great seizure control for a while now, so we're back to the original stuff. Feel free to email me at elsophie AT gmail DOT com if you have more questions.

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  2. I am profoundly grateful that a) you have a Good Neurologist and b) you have found the right medication for Sophie and that c) the combination of a + b is working well for you and Sophie, body, mind & spirit.

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  3. A knowledgeable physician who is a true ally is so precious.

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  4. Thank god there are good neurologists out there!

    Oh, and thanks for passing on the wise remarks from Gary Snyder. I love Tricycle magazine, though it's been a while since I've read it. I should see if I can get it online. (With all of my abundant free time -- ha!)

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  5. So happy you have a Good Neurologist. I particularly love the part where she speaks to Sophie and is warm and engaging. That is so hard to find!! :)

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  6. Bravo to the Good Neurologist!

    Best,
    Bonnie

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  7. We have a family doctor like this. She sounds like a most excellent doc.

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  8. I'm glad you found this good doctor.

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  9. The good ones are out there. Quietly out there. The big egos are always the loudest.

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  10. All of the above. Listed exactly as Karen did.
    SO grateful.

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  11. The best news from the neurology world in quite a while. I'm so glad the Good N. exists. And wonderful news re the OCW!
    xo Sending love.

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  12. Nothing like validation and compassion. What a breath of fresh air in the field of medicine. Glad you and Sophie had such a warm and welcoming visit with said doctor.

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  13. Somehow, I read this all through a lens of irony, and thought you were telling us a tale of a rather sarcastic and uncompassionate neurologist. So pleased to see I must have read it wrong! I suppose after all your tales of the horrors and frustrations of dealing with the medical community and some of Sophie's doctors I'd come to expect endless frustration. Hurrah for some respite for that!
    Emily
    (I'm a long-time reader but almost-never commenter)

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    Replies
    1. Anonymous Emily -- I am indeed a woman of irony, but in this case, The Good Neurologist is the real thing. I felt it was time to applaud her as so often I am down on physicians in the field! Sophie has actually always had wonderful neurologists -- the bad ones were quickly dumped!

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  14. Halle-fucking-lujah! I hope that this Good Neurologist puts those notes to good use and shuts the door when she suggests to some of her other patients that they might try such a treatment course, even though she isn't really allowed to do so. And I hope that she finds a way to talk to some of her other Good Neurologist Colleagues about it in a way that honors your experiences and opens their tiny little neurologist minds.

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  15. There is great hope in this post...that there are good ones out there.

    I hope I have found one also.

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  16. There are good ones--- we've been lucky for most of the 25 yrs we've dealt with epilepsy --- to have had two outstanding--- one for the pediatric yrs and one for the past 11 young adult yrs. It's practically 3 as Mike's epileptologist is married to one who has always taken great interest in Michael's "unique" case. I'm glad you don't have to butt heads with your neuro to give Sophie what she needs. For those parents whose kids have physicians that are obstacles to finding the best treatment/ care for your kids---look elsewhere whenever possible. There are open-minded, compassionate docs who really do want what's best for your child. As for the idiots with exam room sized egos and arrogance--- be done with them!

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  17. One alteration:
    It's not The End
    it's another start
    a new beginning
    love

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  18. The Good Neurologist restores our faith in the medical community.

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  19. The Good Neurologist sounds terrific. I'm so glad to know that there are still doctors like that out there.

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  20. I believe that for one to possess healing hands one must first possess an open mind.

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