Tuesday, May 16, 2017

Report from the Caregiver Chronicles

Sophie, March 1996
New York City

I took Sophie to the pediatrician this morning and spent two blessed hours with her. I say blessed because the pediatrician took care of us. She asked many questions, examined Sophie thoroughly and listened to me tell her what's been going down for the last couple of months. She assured me that we would work slowly and methodically together to rule out infection and virus being the source of some of this distress. We know for sure that there's no infection because all blood work, including cultures, came back negative, except for a slightly elevated white blood cell count. She agreed that the way The Neurologist treated me wasn't right and attributed the behavior as fear-based. She drew a parallel with how some of her patients are treated in the larger community when they choose to delay or forego vaccinations -- as being immoral or stupid or anti-Science. The Pediatrician understands these patients and their fears, is intellectually curious and has pledged to do no harm. She knows that I've been doing this thing for decades and know my daughter best. She made the point that pediatricians can be excellent diagnosticians because they are used to working from non-verbal cues. I watched her examining Sophie and realized that Sophie hasn't been truly "examined" with someone's literal hands, other than the osteopath's,  for -- well -- I can't remember. She is going to run a few viral tests and will get back to me later in the week. She suspects that Sophie might have had some kind of virus or might still have some kind of virus. She agreed that the medication interaction (CBD and Onfi) is worth further exploring and trusts that Dr. Bonni will continue to help me with this.

She supported my decision to take Sophie to a new neurologist -- someone whom I've known for nearly twenty years and who is now in private practice. I'm taking Sophie to see him next week and hope that he'll support us, too. In the meantime, this incredible weight on my shoulders has been lifted by her care, and I have hope that we'll get to the bottom of Sophie's decline. At the very least, I don't feel so terribly alone.

18 comments:

  1. That feeling of being listened too. Priceless. I hope together you can find the answers you're looking for to help Sophie.

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  2. Relief for you and hope for Sophie - the best of news!

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  3. Sometimes all we need is for someone to say, "Yes. Your instincts are right. Let me help you figure this out."
    I am so glad you have that person.

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  4. First, those curls on Sophie's wee baby head. Oh, my! I bet people used to stop you all the time to admire them when she was a baby. Or even now! They are beautiful!

    Sophie's pediatrcian sounds like a gem. I'm glad she is a part of her life.

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  5. I'm happy to hear the weight on your shoulders is a little lighter right now. I hope you can track down what's going on with Sophie, with the help of that caring doctor.

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  6. I'm grateful to read this. Going to a different neurologist is exactly what I'd be doing in your shoes.

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  7. I truly hope the change is beneficial and that Sophie feels better soon.

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  8. I'm so glad you found this Dr. There is nothing better than feeling listened to and having an honest exchange. I hope with her help, Sophie will be on the mend from her current virus or whatever has been ailing her recently. Sending healing love.

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  9. Thank goodness for a good, competent, caring doctor!

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  10. I'm so glad. This brought tears to my eyes❤️

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  11. "Nothing brings you peace like the triumph of principles"
    - Emerson

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  12. I am so grateful on your behalf, and also on mine because it keeps hope alive, that you found this caring and compassionate practitioner. I am glad for the trend that "allows" pediatricians to keep seeing young adults, because just because someone turns 18 or 21, doesn't mean they are entirely different people needing entirely different skills. And I really really hope the Neo-Neurologist is also on the side of the angels, you and Sophie and the universe need this .... S

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  13. What a fight, and I wonder, what do you do to care for yourself?

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  14. Relieved you have found a partner in caring for Sophie.

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  15. I am unbelievably relieved to hear that at least you've got someone who will not only listen, but also treat Sophie and you as people who have worthwhile information to share and as human beings worthy of respect.

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