Thursday, January 22, 2009

Two Conversations

There are a number of assumptions that I'm making with this post, but in a nutshell, if you're reading it you need to know that Sophie is thirteen and has a severe seizure disorder that is uncontrolled by western medication (16+ different trials of said meds). She is nonverbal and needs complete assistance with basically every life task, including bathing, eating, toileting and all self care. Traditional assessments would probably define her as severely cognitively impaired, but we believe that she understands a whole lot more than is apparent. She is having a particularly difficult time, struggling with multiple seizures daily.

I broke down and actually took Sophie to the pediatrician yesterday. She hasn't been to school in days, mainly because she's having a bunch of godawful seizures every single day and we just can't get no relief. For those of you who don't know, seizures are often exacerbated by illness, so I was hoping (yes, hoping!) that she might have an infection, something secondary to the cold that she'd had the week before. That would be an explanation, you see. I also bat around my theory that Sophie's seizures are now the direct result of fluctuating hormones in her suffering thirteen-year old body. Actually, it's not really a theory. It's what I believe. I'd recently spoken with The Neurologist about a new drug that literally just came out from the FDA this week.

"I'm really excited about this drug," The Neurologist said over the phone.

You don't know our history with antiepileptic medications, but it's a grim one. Without reservation or caveat. I am in a position now, though, where I'm willing to try anything. I think. But excited? This is what I said to her:

"EXCITED? I have to tell you that the idea of giving Sophie yet another new medication with virtually no track history is enough to make me vomit. Like right now. When do you think we could try it?"

Back to the pediatrician. She is super nice. Young. Just had twins. She has blue, blue eyes and talks directly to Sophie which I really appreciate. She is sensitive to her as a person, not just a girl with a terrible diagnosis.

We talked about birth control today -- something to consider on the chance that it would help to calm those crazy girl hormones and perhaps, even, the seizures. Remove the stress. Remove the seizures. The good doctor believed that we could start this sooner rather than later (I had thought that one needed to have a regular cycle before starting). I'm thinking new drug or birth control, birth control or new drug? and trying not to cry. How can this be that I'm still squeezing back tears, fourteen years later? But then I'm jerked back to reality by this:

The doctor says kindly, "Are you concerned at all about Sophie's fertility?"

Even though I hate the acronym, this is what I thought:



  1. what DID she mean?

    i think you're absolutely right! i mean, what do i know about all this NOTHING, but it seems certain that hormones could be disrupting everything as they surge and plummet, yes?

    i would be in a flood of tears to see my daughter seize, to not know how to stop it, to have been through all those medication trials to no avail, to have so many unanswered questions about your own child, to have all of it affect all of your lives so much, especially your heart over and over. i'm sending my best your way.

    i think you are amazing.

  2. I know people mean well but sheesh - let's all drink deeply of the very rare Think Before You Speak.

    I wonder if after you left, the doctor thought about what she said and took some time to thump her head on her desk for a while?

    Warm thoughts for you and Sophie.

  3. I think my reaction to the doc's question would have been much the same, but I suppose it comes from that extreme swing of the pendulum to a very heightened sense of the rights of the disabled.

    Personally I think it's gone too far. My youngest son is 19 and has an IQ of about 40 (though I, too, am sure he functions above that level). When the group home where he lives tried to get me appointed as his guardian, the judge said he didn't need one...that he was capable of making his own decisions!!!

    Anyway, I feel for you and your frustration over the meds, because I know something about that. I do think you're right on target about the hormones making things worse. I hope something gets the seizures under control.

  4. ...maybe the doctor was just trying to show sensitivity after suggesting birth-control pills for a teen who isn't menstruating yet? Or maybe it was her way of suggesting that you'd be protecting her, actually, by giving her the case she is ever in a situation where pregnancy might be a concern...? (If someone were to try to take advantage of your daughter's vulnerability)
    I don't know either.
    I don't know anything.

  5. I have to agree with hope505... my daughter is able to speak, but she learned pretty late in development, and I was always afraid it made her a target for all kinds of bad things. She couldn't tattle.

  6. I think I need to clarify -- this is what I wrote a friend this morning about the post: "I mean the idea that I’d be thinking of Sophie’s fertility in the future (as opposed to, say, whether she’ll even be a alive) is just so ludicrous. It’s also the disconnect that one only realizes when it happens. Our “normal” is so not normal. Maybe the doctor thought she was being sensitive. Maybe there is someone out there who is in such denial with their own child that they still worry about things like fertility. I just don’t know. More importantly, though, is that that kind of comment really does serve me positively – I am yanked up and out of despair, into humor."

  7. humor is good :D

    Sorry I went all dark-side on you there.

  8. All I can say is "OMG!!!!!!!"

    Love to you all.

  9. I'm new to your blog and am both touched and saddened. I simply cannot imagine what you are going through, but I can see the strength and the unconditional love that you have for your beautiful daughter.

    My thoughts are with you,

  10. Your life is surreal to me .... a lot of yanking around from despair up to humor in a nanosecond during what for many of us would be a very benign and boring pediatric appointment.

    My experience with doctors is they really do the CYA thing ... it's probably a product of our litigious times

  11. Your theory sounds right to me. I'm thinking of you, and hoping for the best with the drug. What to do is always such a question, right? I never know if I'm doing the right thing for Robert or not. That's the one thing I feel more stress about lately (as he gets older): always having to make the decisions for him . . .

  12. I hate making these types of decisions! I'm sure the doc meant nothing but doctorly things by it, but are you kidding?

    Keeping my fingers crossed for you that this time you'll see some relief from the medication.

    You are an inspiration.

  13. Oh, geeze. I wish I could say something to shed some light.
    I guess what I am trying to learn to do is to go back to the person who poses a question that throws me completely off balance and ask them, even days after the fact, what they meant.
    It clears the confusion a little...sometimes.
    I hope you and Sophie have easier days ahead.

  14. You NEED to write a book...oh thank God...I think you already are...keep going...



Related Posts Plugin for WordPress, Blogger...