Looong week.  Nixi's med increase is not going as we had hoped.  She has been extremely emotional all week and taking a very long time to recover, wakes up at 4am, is antsy and restless, her focus is gone, and today during her nap her legs were constantly moving while she slept.

We had a lot of routine changes at the end of last week before the med increase.  Changes to the routine always throw Nixi for a few days.  We know this so we stayed the course and continued to give her the additional .25 mg of Risperidone in the morning as well as the usual .25 mg at night.  Unfortunately, here we over a week after the routine changes and she's still a mess.  Its looking more and more like side effects, possibly akathisia.  Akathisia is characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still or remain motionless.  Its different than tardive dyskinesia in that it is not involuntary.  That is it is a voluntary movement by a person to relieve themselves of the inner restlessness.  It causes significant emotional distress, irritability, moodiness, and depression.  There is also a subjective side effect not as well research because it is purely by patient report called neuroleptic dysphoria.  Could be that.  Could be the natural waxing and waning of the illness as even with the perfect medication regimen breakthrough symptoms occur, even decompensation.  Could be that she was recovering from the routine changes and then was hit by the ultimate fiasco field trip at school on Thursday.   We just don't know.

That's one of the many horrible parts of medicating a 4 yr old with a serious medication.  While Nixi is extremely articulate and well spoken, its hard to ask her side effect questions in an age appropriate manner.  

In any event, I gave her the full .25mg tonight and will give her a half dose (.125mg) in the morning and call the psychiatrist.  All I know is that we are totally deflated.  

The two weeks after Nixi started meds was really kind of magical.  We were learning all of these new things about her.  There was a lightness in the house that hadn't been here in a long time.  As of this writing, that is gone.  Mike and I are snipping at each other because we're tired.  We're all walking on egg shells around Nixi.  Safi is loving having the loud, fast, rough Nixi until it tips over into a meltdown and everyone is left crying.  Its really miserable and really scary.  Nixi is back to being tormented but this time its different.  Yes, she still hallucinates but her thinking is relatively clear.  This doesn't seem to be coming from a place of psychosis, this is like emotional bombs being dropped on her out of nowhere.  Its not anything like the torment that caused us to begin meds.  This is different, but every bit as upsetting to everyone.  

My hope is that by taking down the meds this will improve.  If it doesn't after ample time to rule out environmental factor....that means this is not the med for her.  That means she will be harder to treat.  Remember, its a very good thing if kids respond well to their first med.  Because it is working on the psychosis, we clearly have the correct class of med but maybe not the right one.  We shall see.  

That's it for tonight.  I really don't have anything more to say.  

Sarah

Despite it all, the girls still knows how to have a good time when her mood allows.......