Tuesday, October 12, 2010

The Big Scare

I'm having a harder time staying up today.  I'm missing school, and am getting further behind in my studies.  I have such a strong need to accomplish something, to move forward, but don't feel very motivated.

We're home again/still.  Lily has been sleeping all morning because of her meds.  We'll be at Stanford in less than 48 hours for our interview with the pediatrc bipolar group, and I feel like I'm pinning all my hopes for a brighter future on this trip.  Not that all will be fixed/cured by one visit, but I so very, very much want to see some kind of change.  Progress.

Lily did go to school for a couple of hours yesterday, which was progress, but I'd love to see more.  I'm greedy for success.  Wanting to see it in leaps and bounds.  We have days where each second ticks by in what feels like slow motion.  It's how someone feels when they're trapped by circumstances outside of their control.  Tick, tick, tick . . .

But perspective is my old friend.  We're not where we were during the summer.  That was a surreal series of events.

Lily's anxiety levels had escalated through the spring.  By the time we finished school in June, I knew we needed help, we weren't handling things well.  We returned to Lily's therapist after a break of more than a year.   One of the biggest issues was that Lily couldn't tolerate certain songs or sounds.  She'd either curl up in a little ball trying to shrink away from the sound, or she'd yell and kick until the offending song/sound was discontinued.  In addition, she was afraid of everything.  Being alone in a room, a stranger walking past.  I was getting pretty twitchy myself. 

Leading up to this, Lily had been complaining about hearing things.  I downplayed her complaints, with comments about how we could all hear our neighbors (we live in a townhome) and that everyone heard things, including our own thoughts.  Lily also began tapping her head nine times whenever she heard a word containing the letters "ck".  This seemed like such a strange compulsion.  The behavior wasn't triggered just by sound, or she'd need to tap her head whenever she heard a "k" sound.  She didn't.  She only tapped when she heard words with "ck".  I honestly didn't know what to make of it.

Lily's therapist suggested that we see a psychiatrist.  I got a recommendation and was able to get Lily in within a week.  Once in the psychiatrist's ofifce, Lily's behavior became more acute.  She looked around the room wide eyed, clearly fearful, and was upset by holes.  Drawer openings, small holes in walls, spaces under sofas.  I voiced my concerns.  She didn't behave that way anywhere else.  I openly wondered if she was putting us on.  She became very upset, I clearly wasn't helping the situation.  We opted to begin treatment with a medication for her anxiety.  Lily objected to the first drug after a week, saying the drug was "evil".  That threw me.  I didn't want the med changed, but the psychiatrist felt like the therapeutic value would be lost if Lily was opposed to taking the med.  So we switched to a different SSRI.

We continued with weekly visits, and Lily's behavior continued to deteriorate.  In mid July, Lily had what I term a psychotic episode.  One evening she became agitated and wild eyed.  She told me she didn't feel safe, and was afraid even when she looked at me.  I told her I'd keep her safe, and went to get a benadryl for her to use as a sedative.  When I returned to the room, Lily had picked up a cat scratching post and began beating a book with a cover she disliked.  I took the post out of her hands and pulled her onto the bed in my arms.  She struggled, but I spoke calmly about how we don't do that, we don't bang on things.  I offered her the benadryl, which she didn't want to take.  She asked me if it was poison.  I was alarmed, told her it was the same medicine she'd taken often before, and told her she had to take it.  She was angry, but complied.

Lily still couldn't settle, and was yelling and kicking.  I took her into our living room to try to distract her with a movie.  We sat together on the couch.  Lily said she felt like she needed to go outside and run around.  It was nearing eleven o'clock, so I told her she couldn't.  She jumped up off the couch and ran out the front door into our dark parking lot.  I followed.  Lily was running and throwing rocks at a fence.  I told her she had to come in, and after a minute or two, she did.  We sat back down on the couch, and Lily told me she was afraid she'd run outside again, and run into the street.  I told her I'd keep her safe, and put my arms around her.  At that point, she fought me and struggled to get away from me.  I held on, promising I'd keep her safe.  She tried to bite me, but I held on untl she got tired.  When the benadryl finally started to make her sleepy, she wanted to lay down on the couch.  We laid down on opposite ends.  I wanted to stay close in case she tried to get out again.  Lily finally became tired enough that she wanted to go up and sleep in her own bed.

What Lily explained the next day, was that she was having visual hallucinations that night.  When she looked at me, I looked different, like an alien.  The morning after this episode, I phoned Lily's psychiatrist.  An antipsychiotic was prescribed, and Lily began taking it that evening. 

I was shaken and scared.  I began researching schizophrenia and bipolar disorder in earnest, trying to build on my minimal understanding of these disorders with the latest research available on the internet.  We didn't have a diagnosis yet, but Lily's symptoms had to be treated.  This was the first truly irrevocable change for us.  I knew I couldn't leave Lily and her brother home alone for even a few minutes.  My mom agreed to come and stay with the kids while I worked at my part time job.  The situation was stressful and frightening for everyone.  Each night I would lie awake and wonder if Lily would get through the night without another episode.  Each morning I would wake and rush up to check on her.  I stayed calm at home, but cried at work.  This was a new reality.

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