Monday, April 13, 2009

EEG Time

I forgot to mention that we had an appointment today for an EEG. This wasn't an emergency or anything, just an attempt to get more information, try to figure out what the hell is going on with Sophie's dysfunctional brain. She's had a million and one of these things and they never tell us anything other than that her brain is incredibly dysfunctional. Honestly, I don't know why I keep doing them.

"It's better to cover all the bases," The Husband remarked the other day. "That way you won't regret NOT doing something."

Wise words to remember when I am tempted to rue the day we tried the new drug. The update on Banzel is that it's just not working. Sophie is on the full dose and feels drowsy much of the day. You might think that's not so bad except for the fact that when she's not sleeping, she's seizing. I'm starting to think that the constant state of drowsiness might be causing the seizures. Sometimes I hold those tiny orange pills up to my eyeball and wonder if perhaps they're really just made of sugar. Anyway, The Neurologist was on vacation so we decided to just start weaning the drug. I've taken a tiny bit away and we'll sit here for a while and reassess. (I've also started taking her back to the Chinese Doctor who is giving me those nasty teas that I wrote about here).

Anyway, back to the EEG. We went to a large hospital here in Los Angeles, a different place than we usually use. I waited for almost an hour after we arrived for our appointment on time (no surprises there) but it gave me a chance to jot down some notes (thank God for writing and for blogs). Here are a few of them:

1. our descent into the lowest depths of the parking garage was epic -- I don't think I've ever driven round and round so far down ever and I was struck by that symbolism

2. when I entered the hospital I was particularly mindful of my physical reactions -- a sort of PTSD -- beating heart, short breaths -- it always surprises me how sensitive my body is

3. I pushed Sophie in her stroller wheelchair for what seemed like forever through a labyrinth of corridors and hallways. When I glanced to the right and left through doors with ominous sounding names I thought of that wonderful phrase THE PROCESSION OF THE DAMNED

4. a young adult, a boy, in a wheelchair in the neurology waiting room with his over sized mother. His shoes were black and enormous and he wore a white terry cloth bib

5. a girl like Sophie in a brown velour track suit with a tilted head and wild eyes

6. a sweet teenage boy holding a ziplock full of prescription medicine bottles, flanked by his smiling parents.

We went into the EEG room and an incredibly efficient Egyptian technician ( I asked him where he was from and he told me) named Alex proceeded to glue the electrodes on Sophie's head while I held her head down. Which leads me to the main point of this entire post -- sorry for the incredible number of digressions --

When are these people going to come up with a better adhesive than glue for the electrodes?


The reason for the shot above is not exploitation but to demonstrate that they use COMMON MASKING TAPE to hold the gauze in place that, in turn, assures that the electrodes won't fall/be pulled out. I wish I'd had a movie camera to show you how efficiently this guy ripped up that roll of masking tape. He would pull a strip off, tear it with his fingers and STICK IT TO THE WALL. Then we had enough strips, he just started wrapping them around and around Sophie's head.

"Watch her hair, please," I said at some point. He paid no attention but I didn't really mind because it was just so damn absurd.

You'd think that if we have the ability to read brainwaves -- hell, I'd go further and say talk on cellphones -- someone would have thought of an easy wash-away glue for administering EEGs. As it is, Sophie will have the stuff flaking from her hair and scalp for weeks.

As for the masking tape, my very funny friend compared it to the duct tape that they used on some space shuttle. And we know what happened to that.
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  1. if I had to find the positive in all of this, I would say thank goodness there was no staple gun in the office.

    at the very least, a transparent scotch would be much more flattering.

  2. Your description of descending into the parking garage made me think of a chambered nautilus.

    We've only had heated gel (instead of the cold stuff) for ultrasounds for a few years. Someone, somewhere must be innovating in these EEG delivery issues.

    I noted you have found Dave Bonta over at Via Negativa. I call Dave when I have technical questions. He is a wonder. (His mother, Marcia Bonta) is a fine author, too. She is a naturalist. They are quite a family.

  3. I have just discovered your wonderful own daughter with disabilities is also named Sophie!! I hope you will drop by my blog for a visit...not a poetic spot...more politics, very Canadian in scope...but I know we all face similar realities day to day.

  4. Masking tape or no, she looks like an angel.

  5. Masking tape? REALLY?! WTF?

    When Emmett has his regular MRIs, they use wash cloths and duct tape to hold him still. Mind you, he's already sedated. Seeing my unconscious little boy duct taped to this giant machine makes me want to vomit.

    You're right: there's got to be a better way.

  6. It's amazing how you are watching and observing yourself through this process. It's a way to cope. I'm sorry her medicine isn't working like you'd hoped. That has to be such a letdown. Sophie's so lucky to have you in her corner.

  7. I'm exausted for you!! I understand the process and wish I could offer more than my support and a huge hug to you all!! Hang in there hon! Blessings, Sarah

  8. Oh my. I hear you, especially when you say, "If we can create...why can't we invent...?"
    Glue & masking tape: that's new to me, in the hospital setting. I got used to coband & GLAD Press'n'Seal. Maybe they need a parent panel helping them trouble-shoot this!
    You use your time so amazingly efficiently, writing while you wait, observing everything (inside and outside of yourself), gently interviewing the staff, caring for Sophie. You are a wonderful mother.

  9. I love the way you wrote about your experience.

    I cannot believe the whole masking tape thing! My daughter has had a seizures since 4 months of age (she's now 14 and still suffers from them) so we have loads of experience with EEGs. Cant say I've ever seen any tape. Then again, the fully sedate her under general anesthesia (sp?) or else it would NEVVVVVER happen.

    That goo they put in the hair is like, the worst part. I mean, worst after the whole "my child has a seizure disorder thing". :)

    take care! and sophie is one of my favorite names and the name of one of my 4 girls as well!!!

  10. Your site moves me in ploar opposite ways - near tears for Sophie and then my heart just sings with the poetry.

    I look forward to coming back often.


  11. Masking tape aside, she looks peaceful here. I'm new and don't know what to say other than, i feel your pain and hope for the best.

  12. The interior space of hospitals is positively medieval. You might as well be describing the spanish inquisition. The masking tape and the glue makes it all seem so jury-rigged and thrown together. Not much re-assurance there.

    A better design for the bldg would be the Guggenheim with it's gentle and constant curve. It still goes down down down - but it's very quiet and light filled.

    I really feel for you.

  13. Oh this is such a drag. You're absolutely right. How can they not have figured out a better system?


  14. Sophie is very beautiful.

    It can be a very hard life can't it?

    Love Renee xoxoxo

  15. It's just so damn simple. I'm thinking of when my son was in the police academy. The day they all got pepper sprayed or maced or whatever. So they knew what it would be like. Okay--so they didn't have them shoot each other. But I'm sayin': line up for those EEG's, bitches. Get glued. HOnestly.



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