Thursday, July 12, 2012

On being persnickety, brain worms and epilepsy


adj -
1. excessively precise and attentive to detail; fussy; also, having the characteristics of a snob
2. (of a task) requiring close attention; exacting

[originally Scottish; of unknown origin]

This post will make no sense unless you're me and you've just read a story about brain worms and epilepsy, a story that took you back nearly ten years ago when you sat up one night, cruising the internet trying to find a reason for your daughter's unexplained weight loss and increase in seizures because no one else, including your neurologist at the time and the head of gastroenterology at one of the city's greatest hospitals didn't seem to care and somehow found yourself at three am on a site detailing the hideous effects of tapeworms that after being ingested made their torturous way to the brain where they wreaked havoc. You remembered that the dog was new and the dog had fleas and tapeworms came from fleas and were instantly convinced that that was it -- the weight loss, the increased seizures (pay no mind to the ten years before of unremitting and unexplained seizures) -- this was it -- and the next day you called your pediatrician and told him your secret discovery and even though he wanted to laugh he said that he would do a stool test just to be sure and you thought bless him for humoring me because I'm insane -- and then when the test came back negative, you thought shit, it's come to this: no one knows, no one knows, no one knows.


  1. No. No one does and yet, someday, someone will.
    Cold comfort for you and Sophie. But I swear, some day they will.

  2. Oh, it makes sense.

    For me it was questioning whether it was the mold in the house we moved into when she was 5 months old, but then remembering that the infantile spasms started before we moved into that house.

  3. This reminds me of a moment in the hospital, when I asked Katie's surgeon if her scar tissue would prevent her from carrying a child. She hadn't yet recovered from her surgery; she was still inpatient, regaining strength enough to walk. She had had a kidney, adrenal gland, a lobe of her liver and her entire IVC removed, along with the tumor. We didn't know if the chemo had worked, but it sure didn't look as if it had, and I was asking about the potential for her to bear a child! Her surgeon treated me with care and seriousness, but I wonder if he was thinking I was a little nuts, because under the circumstances, it sure sounds like a bit of a crazy question. Crazy with hope for her future, I guess. There's nothing really wrong with that kind of crazy - or with your question to Sophie's doctor. It is our love that gives us so much hope and faith, and without some kind of hope, where would we be?

  4. I'm sure I would have been convinced of the same thing.

    P.S. The cartoon could not be more perfect.

  5. the "not knowing" is so hard to deal with -- aren't they DOCTORS for crying out loud? Can't they talk with other DOCTORS and figure this out? I know they are not "God" but still...

    I have learned that doing your own research can be very valuable - and can drive you crazy. But what choice do you have?

  6. I have to remind myself that doctors are flawed humans like the rest of us.

    My son is lucky to be able to do his own research on his condition, but it doesn't make a "cure" or treatment arrive any quicker.

    I love what Karen said, "It is our love that gives us so much hope and faith...."

    And indeed, It Is What It Is.

    Anyone who argues otherwise hasn't lived this.

  7. I once wrote an article about the Internet and how it fuels incorrect self-diagnosis. I bet doctors wish they could unplug the whole damn thing.

  8. Happy to have stumbled upon your blog! I care for my brother who has intractable epilepsy who is now 46 years old. I hold out hope every day we can somehow stop his seizures. He does too but doesn't let the seizures stop him from enjoying Jeopardy or a good game of cards. Looking forward to reading more of your blog.

    caregiving. family. advocacy.

  9. Katie was pre internet. I spent years pouring through medical texts looking for an answer which never came.

    There is an answer but nobody likes it. Random shit happens.

  10. I love the doctors who can admit their frustration at not having the answers, either. It somehow makes the not knowing a little easier, not much, but a little.

    I have learned that getting an answer doesn't generally result in angels singing and me being bathed in light, but it doesn't stop me from wishing I had one.

    Love and light.

  11. you paint this reality so vividly. sorry i haven't been visiting - my husband, (the healthy one) has been in hospital - pericarditis. so it's been a weary time...

  12. Cheers to doctors who humor requests - our ped does and I love her for it. Others (like ENT#1) poo-poo'd me & I've dropped them. I wonder if there is a medical justification in that it's best to head off the caretaker's obsession du jour so that they can refocus on their charges? In our case I figure it's that bargaining stage before acceptance.



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