The Daily Limp

I’m not entirely sure why I write this blog.  I think I write these posts because I need a place to put “all the stuff”.  I also write these posts because I’m hopeful that it might be useful to someone else.  Maybe our daily limp with a childhood-onset schizophrenia spectrum disorder, what it looks like, trying to treat it, how it affects our family, and all the rest of it will make a difference in another person’s life.  One hopes…

Well, we saw Dr. Klerpachik on Friday, and I must say that I genuinely like him.  How can one not genuinely like a man who openly speaks of needing to watch his carb intake while glancing down at his belly? He is a truly collaborative psychiatrist, and that’s rare.  So, how is Grace doing? Poorly.

The bump in Abilify has not helped.  The bump in Lamictal has not helped either.  Her mood is still mercurial, and she is still hallucinating.  Then, I mentioned Grace’s bouts with mixed states.  “Oh, tell me about that.”  I went on to describe Grace in a mixed state.  “Well, she’s paranoid, manic, and deeply depressed all at the same time.  Frankly, it’s awful.” He grimaced.  “What do you do when she’s like that?” I sighed, “I try to get the family out of the house, and then it’s kind of like herding cats.  For a few moments she’s really elevated and wandering around the house.  In an instant, she switches.  Then she’s openly weeping and stomping.  She becomes very belligerent.  She usually tries to lock herself in a room and refuses to come out.  Then she’s paranoid, thinking someone is watching her.  The cycle lasts anywhere from three to twelve hours.  If I can get her to fall asleep, her brain will usually reset.” He got up and paced for a bit.  “Have you tried Benadryl?” I laughed, “I’m way ahead of you.  She has a paradoxical reaction to it.”  He put his hands on his hips, “Hmph.  That can happen.”  I went on to say, “You might not like this, but I give her Dramamine to try to induce sleep because of its soporific effects.”  He looked thoughtful.  “That’s not a bad idea actually.  Does it work?”  I nodded, “Sometimes.”

In the end, he gave me a PRN (pro re nata) prescription for Seroquel to be tried during psychosis (the mixed state).  It is in the same class of drugs as Abilify, but it is known to be sedating.  He’s hopeful that it might cause Grace’s brain to calm down and let her sleep, thus, resetting during these psychotic times.  We shall see…

We moved on to speaking about Grace’s social skills regression.  I am deeply troubled by her behaviors, and it pains me to see her losing her ability to know what is and is not socially appropriate.  Dr. Klerpachik explained that this sort of regression is common with schizophrenia spectrum disorders because of the cognitive impairments that go along with it.  He began with, “Because of the cognitive impairments due to the neuroprogression of the schizophrenia spectrum disorders, kids can appear to behave as if they have autism.  Not that Grace is autistic, but there is something called…” I interrupted him, “Are you going to talk about ‘theory of mind’ (ToM)?” He said, “Why, yes!”  I got a little excited here because ToM is central to what I do for a living.  This is something I could wrap my brain around. “Are you trying to say that ToM difficulties are also common to people on the schizophrenia spectrum, and I should expect Grace to struggle with this now and in the future?” He replied, “Yep.  She’s actually going to need social skills classes much like the autistic kids do, but no one is going to put her in with the ASD kids because she’s not autistic.  It’s really too bad.  There’s not enough resources for these kids because there aren’t a lot of them out there.”  Well, I can do something for her.  This is what I do, and then we’ll see what develops.  At least I don’t feel  helpless, and that’s worth a lot.

Remember how I talked about taking care of yourself? Well, I’m trying to practice what I preach so I went to my book club meeting even though I hadn’t read the book.  Yes, I’ve become one of those people.  The woman who goes to book club but doesn’t read the book.  I don’t have time to read novels right now, but I’ll get there again.  I have to say that the women in this group are all lovely individuals.  Every time I show up they inquire after Grace almost in unison, and they listen to me drone on.  They even take their time explaining the novel’s plot just for me so that I can follow the discussion.  They don’t have to do that.  In fact, it might be annoying, but they do it anyway.  I appreciate it to no end, and it’s little supportive offerings like this that go a long way into making our ‘daily limp’ more enjoyable.

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Because Gracie loves the LOLCats

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2 thoughts on “The Daily Limp

    • I think I have to write just to process our life. There are few people I can talk to about it. Sympathy and empathy are very different. So…I write. Thanks for reading. xo

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