Tuesday, October 12, 2010

When Things Became Even Worse

After Lily's psychotic episode, I thought we'd been through the worst, and that with treatment things would just improve.  I was wrong.  Each day was just as scarey as the one before, and anxiety levels for all of us were sky high.  Lily's hallucinations were increasing.

I tried to keep Lily and her brother busy with fun activities.  Sleepovers, visits to the Boardwalk, going to the park with friends.  I tried to keep a close eye on Lily and minimize her distress, but that didn't always work.  We spent an evening at the Boardwalk which ended badly.  The sound levels bothered Lily, but she didn't want to leave.  She rode one particular ride on which the ride operator encouraged the riders to yell as loudly as they could.  Lily was in tears when the ride stopped, and furious at the ride operator.  I knew we needed to leave, and we headed for the car.  By the time we got to the car, Lily was yelling at her brother, unhappy about sounds he was making.  She was out of control and it was a hard short ride home.

Within a week, things deteriorated even more.  We had a double sleepover on a Friday night, with a friend each for Lily and her brother.  No one got much sleep, and we tried to keep things calmer the next day.  By that evening however, Lily was higly agitated.  She spent a fair amount of time yelling, mostly that she didn't feel safe.  I repeated that I would keep her safe and tried to hold her close to calm her down.  It didn't help, and she was clearly afraid of me.  I agreed to step out of her room to try to make her feel more comfortable.  Lily picked up the phone and called her friend's mother, asking to be taken to the doctor.  I was unaware of the call, and the mother called my cell phone.   I gave her a brief explanation, and rushed back up the stairs to try to calm Lily down again.

By then, Lily had locked her door and phoned 911.  I got the extension and explained to the operator that Lily was having hallucinations and was under the care of a psychiatrist.  The operator explained that she had to send deputies out to check on Lily, and we stayed on the phone until the deputies arrived.  The operator explained to Lily who was coming and that they'd need to go into her room to speak with her.  Lily was completely compliant.

When the deputies arrived, I fell apart trying to explain what was happening.  The trio of deputies were compassionate and amazingly good with Lily.  She wanted to see a doctor, and the deputies made the decision to take her to emergency.  They explained everything to me, and I followed them to ER.  Lily was admitted on a 5150, code for a danger to herself.  We spent a long night in ER.  There is no local adolescent psych ward, so Lily would be transferred to the nearest one, about an hour away.  When the ambulance came to transfer Lily, she asked me to ride with her.  Of course I went.  By then her hallucinations had stopped and she wanted me with her. 

We rode to Fremont and I followed Lily into the facility, thinking I'd go to the cafeteria and get coffee after I got Lily settled.  I thought I'd sit and wait for a reasonable hour to call for a ride home.  Wrong again.  We had entered a locked facility.  I was stopped at the door to the adolescent ward.  It was explained to me that I couldn't go in, and there was no public cafeteria.  I was let out the locked exterior door, purse and cell phone in hand, in a city I wasn't familiar with.  It was not quite six in the morning.  No car, no knowledge of a nearby coffee shop, no place to wait besides a bench in front of a closed Quiznos sandwich shop.  I'd left my precious daughter in the care of strangers and would be allowed to see her that evening, for not more than one hour.  Her admittance to this facility was involuntary.  Neither she nor I had any control over her admittance for the next 72 hours.

In tears, exhausted, feeling destitute, I wandered up and down the nearby streets hoping to find a Starbucks.  I finally sat on a bench and called my mom who'd been blissfully unaware of the events of the previous evening.  I'm sure I frightened more than one person on their way for an early shift somewhere.  This was as low as I'd ever been.


  1. Wow. Lily is 13 at this time?

    I have to say that I really didn't have a clear idea of what a person hallucinating might behave like. I often wonder if some of the behaviors; shrieking, running away, hiding, saying "what was that?!" and her self stim. stuff are just due to her anxiety or if she thinks she has really seen or heard anything. When I ask her she just says, "nothing." At this point she doesn't have a psychiatrist as paying for care has been nearly impossible. She does see an MD, psych through the place we applied for the clinical trial (she's not old enough) and her medication is managed through them. I have to find some more responsive individuals for her team though as the MD at this clinic never calls me back!

  2. Oh Honey - this is tricky. I downplayed my daughters early reports of hearing things. And she did experience the things you describe early on, but I don't know that that's exclusive to someone experiencing hallucinations.

    It's so frustrating and heartbreaking to worry about your child and not have the resources to deal with it in the way you'd like to. If you're not getting called back, you're not getting what you genuinely need. I'm sorry. If I didn't have damn good benefits through my work we'd be up a creek, and I can only imagine the worry you must go through.

    So - as hard as it is, keep pushing. I absolutely belive it's true that you are the expert on your child, no one knows her like you do. You have to trust your gut if something doesn't feel OK.

    And this may be hard, but don't trust a pro's opinion if it doesn't make sense to you. You're clearly intelligent and are getting educated about as much of it as you can.

    Sending good thoughts and prayers your way.

  3. And yes - sorry for not answering above - Lily is 13 years old.

  4. hahaha, we were just posting @the exact same time! (it told me someone was editing this post and wouldn't let me comment)

    *sigh* my heart flutters, my ears redden, and my eyes tear with the relief of acknowledgement.