Family and Caregiver Schizophrenia Discussion Forum

Help- Where do I start?


#1

I am overwhelmed. Mother of 4 kids. 12 year old boy.girl twins, 10 year old girl, and 6 year old girl. My t 12 year old daughter is driving me to the brink of insanity. She has a diagnosis of aspergers but my husband and I have always thought that schizophrenia was part of the equation. There are so many issues we are dealing with, I don’t know where to start. We’ve done everything we can to help her from speech/ot/pt sessions/extensiveIEP/accomodations at school to psychotherapy and medication. We’ve tried abilify, zoloft, aderrall, and prozac. The only one that has helped at all is the aderrall. Symptoms got worse with the others. Here is what we are dealing with. She doesn’t have any interests at all, other than playing on her phone(a few apps/listening to music). She really can’t leave the house. The only thing she likes to do is scream at me about whatever topic she gets “stuck” on. For example, today we said we are going to go to Costco to buy fireworks. She asks me why we can’t go to a regular firework stand and I tell her that Costco is a better deal. Then she screams at me and tells me that we are so cheap. She repeats this loudly over and over again. Then she goes and asks Dad who tells her that maybe we will buy a few special ones from the stand. She comes back over to me and yells at me that we are cheap and this goes on for about 20 minutes. This scenario happens multiple times per day. We have tried telling her she has to go to her room when she starts to “harass” us but she will not go to her room. She is 5 foot 6 inches tall and we physically can’t get her to move. We have also threatened to take away her phone and have but it does nothing to curb the behavior. I have tried short term and long term reward systems but there is no reward she is interested in. We have tried ignoring her but she continues to harass us and gets louder and louder the longer we ingore her. If we take her to a restaurant, she is good for about 5 minutes and then starts to yell about when the food will be ready. She also gets very silly and obnoxious and starts yelling inappropriate embarrassing comments. We can’t even go to old family friends houses that she used to be comfortable at. The last party at a family friends house that we went to, we had to leave after a few minutes because she followed me around and yelled at me asking why she has autism over and over again. If I go outside to chat with the neighbors, she will see that I’m not in the house and come out and start harassing me in front of the neighbors and will not go back inside until I go back and she follows.
Each summer, she has attended an awesome summer day program at a school that is very flexible and is used to working with special needs kids. She went for 3 rough days and they finally called me to pick her up because she was screaming in a classroom(for no definite reason) and refused to stop or leave the room. They had to escort the other students to a different classroom because she wouldn’t budge or stop screaming loudly. On the way home, she started crying saying she doesn’t know why she is doing this and can’t stop herself. She has always been very well regulated at this school in past summers. On the second day, she yelled during cooking because she said they lied to her about what they were going to make. She repeated this over and over again. She also yelled the entire bus ride to the pool because she said they didn’t have anything good to listen to on the radio and it was a big conspiracy. They told me all of the other students had hands over ears because she was screaming so loudly the entire ride. So, now she will be home for the summer all day, every day, following me around and yelling at me over and over again. Can’t take the other kids anywhere, do anything. We just had psychotropic testing done and she has just started taking Luvox yesterday based on the results. She is also taking aderall. My other 3 kiddos are so well adjusted and are so accepting of our situation but I feel so badly for them. The behavior is just so bizarre. Doctors haven’t been able help us. She has had several work ups done at Kennedy Krieger. She just acts so differently when being evaluated. I’ve tried videotaping the many episodes but she throws the phone when I do. Where should I turn? What should I do? Help!


#2

I would call your local NAMI organization in your city or area. They have resources they can share with you. Also I believe you need to find a Psycharist that you can talk to and take his advice. What your daughter is doing is not normal and the sooner you locate a doctor you will feel something is being done not only for you, and your family, but for you daughter as well.


#3

You and your husband need to team up to get this behavior on video for when you next go to a doctor. My daughter is diagnosed as schizophrenic, and at times she flips out over the smallest thing and it turns into a total tirade for 20 minutes about how nothing is fair and nobody listens to her, it’s like a movie reel playing in her head and you just have to wait for it to finish. Trying to reason with her or interrupt only escalates and prolongs it. We have far fewer episodes now (my daughter is now 15) than when she was your daughter’s age. But she is also on several meds - clozipine, clonidine, latuda, and lamictal. And these meds only came after repeated hospitalizations, day treatment, and alternative schools.

Can the other siblings go to camp, even town camp, to get out of the house for a few hours a day? I have a 12 year old also with no issues; I wish I could find a sibling support group for her.

Good luck! Don’t give up.