My Niece's Story

I just wanted to share an awful thing that happened to my niece (let’s call her Cindy). Cindy is 15 years old. Her mother, my sister, is She has been hearing voices that tell her to hurt other people and herself. She picks at the skin on her feet until her feet bleed bad enough that when she walks, she leaves bloody footprints behind her. She bites her fingers so bad that she had to start wearing gloves everywhere to discourage it. She carries on conversations with the voices.She wrote a note about what the voices had told her at school and it fell on the floor. The teacher picked it up and saw what it said. She was escorted to the counselor who immediately called my sister to let her know that Cindy was a threat to herself and others and had to go to a behavioral hospital to be evaluated and get a doctor’s clearance before she’d be allowed back at school. The hospital she was sent to was comprised mainly of kids who were going through substance abuse programs, but it was the only one that had an open bed that my sister’s insurance would take. At the hospital, they took away Cindy’s gloves, so she started biting herself again. Between that and talking to herself, it didn’t take long before the other kids started bullying her. The pdoc at the hospital decided that she simply had an extreme case of anxiety, gave her meds for it, wrote her a note for school, and released her.

She didn’t get better. Luckily, my sister had an appointment for Cindy to see a different pdoc, and this pdoc put her on antipsychotics. Cindy still heard voices, but she started hearing a new voice, a nice voice that told her good things. She stopped picking at her feet and biting her hands. Then for some reason, they took her off of the AP. I can’t recall why, but the doctor had some silly reason. Cindy quickly got worse. The voices came back and she started self harming again. My sister didn’t know what to do, so she just tried to keep Cindy’s routine as normal as possible while waiting for the next appointment with the pdoc.

Unfortunately, before the appointment, Cindy took to ripping up her arm in school with a pencil. Apparently, it was pretty bad. It freaked her teacher out, and the school ended up calling the cops. The cops handcuffed Cindy in front of the whole school. Everyone was trying to see what was going on and was wondering what she had done wrong. She said, “You might as well just kill me now!”, meaning she was dying of embarrassment. The officers took that to mean she was suicidal. They put her in the back of a squad car and drove her to a behavioral hospital where she was put on a mandatory hold. They put her back on APs at the hospital, and she acted like she was better. When she got out about a week later, she got into a program where the state paid for her to go to a special school, so she never had to face the students that saw her handcuffed and carted away.

My sister told me that she is worried that the state won’t fund Cindy’s education at that school for very long, and she will be forced to go back to the other high school. The teachers and students all treat her like a pariah there. She also told me that Cindy isn’t really better. She only acted better to get out of the hospital. My sister can’t get her in to see the pdoc fast enough, and she is nervous because the pdoc took her off the other APs in the first place, and she doesn’t know what she will do now. Cindy desperately needs help. Unfortunately, they are very limited in what doctors they can go to because they have medicaid, and most doctors are overbooked in their area, and it is hard to get an appointment at all, let alone one as soon as they need it.

My sister and I both have sza, so it runs in the family. Cindy has not been formally diagnosed with anything, except for the pdoc who said she suffers from anxiety. In my very unprofessional opinion, Cindy may have sza too. We have seen her go through what seem to be manic and depressive phases, and she certainly hallucinates. She also has a plethora of negative symptoms.

My daughter has bipolar disorder and is difficult to deal with; I can’t imagine what my sister is going through. Taking her off of the original APs really seemed to mess her up. Meds make a difference!!!

Anyhow, that is Cindy’s story. I thought I would share.

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I’m sorry for your Niece. I truly am. I never understood the embarrassment of something like that but that sounds horrible and like the system is just pushing her around like they have been doing to me. Bouncing around from place to place hoping someone will help. I hope your niece makes a full recovery and can go back into public with some hope herself. :heart:

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Your diagnosis and your sisters, were they both early onset as well?

My sister was diagnosed in her 20s, and I was diagnosed when I was about 30, so no. However, we both had issues long before that. Our mother just didn’t take us in to the doctor. We grew up really, really poor, and Mom couldn’t afford co-pays. I learned to ignore it until it got really bad, and that was when I was diagnosed.

So you have two people with Sz, you and her mother. And she also has a bipolar cousin. And your niece is having problems and no one is really taking the time to consider ‘Hey I wonder if it could be Sz’. Freaking Hell.

I’m so sorry. It shouldn’t be so easy for the system to fail those that need it.

If it is any consolation, she has two people who know what she is going through and can help her learn to deal with the parts not covered by medication. If the pdocs will ever figure it out well enough to get it that far.

What are you and the mom planning to do? (If you don’t mind my asking.)

I’m 1700 miles away from her, so I’m kind of limited. Cindy doesn’t want to talk on the phone, so there’s not much I can do. I just support my sister and listen to her. I offer advice when I can.

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@Happy_H. Here’s a list of Early Diagnosis & Treatment Centers. Maybe there is one near where your sister lives.
Worldwide Early Diagnosis & Treatment Centers for Psychosis & Schizophrenia

You can also read more here:
The Importance of Early Treatment for Schizophrenia and Psychosis

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I hope you and your niece and your sister and your daughter can all find peace

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