[punkybrewster6k]

My daughter is forever in her own world with visual hallucinations. Auditory are there but I dont think she realizes yet that no one else hears them. She is now 13. Everything crashed at 12 and she has been hospitalized 3 times. She is in the hospital now as I write this, being put on Thorazine and taken off Rispirdol. Rispirdol helped for a year but never really got rid of her hallucinations or psychosis, it just made them easier to deal with. And she is taking zyprexa at night which knocks her out to sleep. (she never slept in 12 years)
School started and the stress that goes with it brought on the scary hallucinations again. Thats when we hospitalize. When she gets scared. She has always been a little different and from the age of 7, they said ADHD but I knew it was something else. She sleeps with a strobe light flashing in her room and the radio blasting country music every night. Shadows come after her and disappear when they hit her face. No mirrors allowed because 6 foot shadow sneaks up behind her when she looks into it. man with no eyes and a boy and girl are at school. The man with no eyes punches her teacher and flips her friends hair in class. Cats everywhere, big black hairy dog, bugs under her skin, bad smells... Some of this for as long as she can remember. The visuals become less at times but with stress they get worse or scare her. She can usually rationalize and say she is tired or stressed.
Grandfather, uncle and aunt with diagnosed sz. BUT.... I have a question. She is not a loner. She is outgoing. She is so outgoing that she drives people nuts. She will tell you she has tons of friends but has none. She is quick to make friends with everyone but cant keep them because she is so intense and extremely inappropriate with her actions. Laughing at the wrong times at nothing, etc. Everything I read and hear says she should be a loner. Quiet and recluse. Shy and quiet. What is going on?

[faerie_moon_x]

If she has pressured speach like me she won't be quiet. I have bipolar and not sz. Pressured speach is one of my primary symptoms of mania. I also am diagnosed schizoid personality type which is a loner type, but I'm actually very outgoing and talkitive. I can make friends but hard to keep them, (which is a common issue with people with MI.)

One thing to remember is that everyone is different and experiencing things different.

[punkybrewster6k]

Huh. She presents and has presented for years all the symptoms and markers for schizophrenia along with the hereditary side of it. I just have never seen a social person with schizophrenia. It is like she has mania every day all day for years even before trying medication. She is so talkative and restless and hallucinating. All the time. We used to try to pay her when she was younger to be quiet for 20 minutes. she never made it. Even now she wouldnt. She has to get her thoughts out verbally in order to go on with what she is doing. Her psychosis does not coincide with mania or depression. (sigh) I just wish we could figure her out. She is getting worse and further away from reality as the months go by. In the beginning she was dx bi polar1 severe but by her second hospitalization, well, it was obvious to her pdoc and hospital that she was constantly psychotic. I dont know. I guess we wait until her late teens and see but those with experience are saying a dismal prognosis. I hope not.

[faerie_moon_x]

Has she been evalutated for schizoaffective bipolar type? That's like similar to having both schizophrenia and bipolar and psychosis is not dependant on mood. My delusions didn't seem to be dependant on mood but I wasn't able to get treatment during the 5 or so years it was happening, so my dx is rather incomplete.

[newtus]

that does sound like schizoaffective

[punkybrewster6k]

We have a meeting monday at the hospital. I can only get there twice a week because it is 2 hours away and we dont have the gas...thats upstate NY for you. Everything is so far away. I will bring that up to them. I was looking at schizoaffective before but they never mentioned it. Would the same meds as for sz work also? So tired of switching meds...She seems okay now that she has been on the thorazine for 4 days. They keep upping it. She is happy there are no hallucinations but she seems to still be wired, changing the subject every 3 minutes as usual and now stutters. Problem is, the hallucinations always come back once she gets out of the hospital. Thanks you guys. I appreciate your suggestions a lot. This is the first time that I have someone to talk to who understands. We have no resources up here and this just may keep us from going mad.

Sadly it sounds like psychosis. Your in a rough situation. My opinion is that you should try to keep the meds low at least whilst she's developing. As it stands she is dependent on you until 18 anyway , so i would focus on psycho education and psychological interventions until she's a fully developed adult. But keep the meds going as well.

Good luck its awful that this has happened so young

[Atypical_Disaster]

Would the same meds as for sz work also?

It depends on the medication. The newer anti-psychotics(ie Zyprexa, Geodon, etc) can work for psychosis and mood, but the older ones like Thorazine will probably work more for psychosis than mood. It's possible that she needs a mood stabilizer along with the anti-psychotic.

Also, all that speaks quickly is not mania. It could be mania, but it could also be psychotic agitation/excitement.

[punkybrewster6k]

Geodone is what put her in the hospital this time. She was on risperdol for a year and had it upped 6 months ago. Still saw things and heard things but it was bearable to her. when school started this fall, it all got worse and started scaring her so pdoc weaned her off and we were trying geodone which was bad,bad,bad for her. Violent. A week of that and she was in hospital now on thorazine. Its hard. I feel like I am mourning the loss of my child. She is a sweet, kind, friendly kid. It also seems that the meds have retarded her mental maturity. She would rather play with 8,9,10 year olds than any her own age. No friends. Just her mom and dad to hang out with. Thanks for listening guys.

[newtus]

im not a doctor ok

but unless she really needs thorazine ive seen people take thorazine and it just makes them sleep all day. its like a tranquilizer.

[punkybrewster6k]

Psychotic agitation/excitement. THAT was the description I was looking for. That is her. All the time. Some days more some days less but always there.

[punkybrewster6k]

Newtus, that is what im worried about. The thorazine shuffle.

[Atypical_Disaster]

Originally Posted by punkybrewster6k

Geodone is what put her in the hospital this time. She was on risperdol for a year and had it upped 6 months ago. Still saw things and heard things but it was bearable to her. when school started this fall, it all got worse and started scaring her so pdoc weaned her off and we were trying geodone which was bad,bad,bad for her. Violent. A week of that and she was in hospital now on thorazine. Its hard. I feel like I am mourning the loss of my child. She is a sweet, kind, friendly kid. It also seems that the meds have retarded her mental maturity. She would rather play with 8,9,10 year olds than any her own age. No friends. Just her mom and dad to hang out with. Thanks for listening guys.

This sounds so familiar because this is extremely similar to what happened to me when I first got severely sick, I was around your daughter's age. The newer anti-psychotics really mess with me too. I can't take them, it's intolerable to me. I'm taking Haldol now, which while it's helping it's still not perfect.

[Atypical_Disaster]

Originally Posted by punkybrewster6k

Psychotic agitation/excitement. THAT was the description I was looking for. That is her. All the time. Some days more some days less but always there.

She sounds a lot like me when I was that age. I got sick young too.

[newtus]

yea i got sick young too as well

at 9. got worse at 13 and so on til im on disability at 23

[Atypical_Disaster]

Originally Posted by punkybrewster6k

Psychotic agitation/excitement. THAT was the description I was looking for. That is her. All the time. Some days more some days less but always there.

I'm glad I was able to help you find the right words. I'm sorry for you and for her. I know it must be awful for you to go through this when she's so young.

[punkybrewster6k]

Haldol is the next option if thorazine doesnt work. I am starting to see that nothing really WORKS. You just look for something to make things bearable. Seems she has always been sick. She has 5 siblings who dont want to be around her. It was so hard for them when she was real young. I think they all have PTSD. She always had something wrong we just didnt know and she couldnt tell us. It tore the family apart. She is the youngest so she is the only one at home which makes it a little easier to manage her. She cant have a lot of stress. Applied for disability the first time she was hospitalized and she got it no problem. What is your experience growing up through your teens up to adulthood. Did it get worse? Did you know what was going on in your head? Are you living on your own or still at home? I know everyone is different, I just am curious on some of the things I should expect in the future. She will be 14 in January but is still so childlike. A teen one minute then a small child the next. By the way. She is also almost 200 lbs from meds. zyprexa is the worst I think. And the risperdol she was on.

[punkybrewster6k]

Did I mention how awesome you guys are?

[newtus]

i got even worse when i hit 17. ive had trouble with the police many times with psychosis at 17 and til now at 23. i still live at home. have a broken family. so with my dad. i got disability no problem as well. i have no friends so loneliness makes things worse. crap really hit the fan in adulthood. something about adulthood is really a tough time. i didnt understand conpletely what was wrong with me just that something wasnt kinda right

[Atypical_Disaster]

I don't normally talk about this but I think it might help you so...

What is your experience growing up through your teens up to adulthood.
It's been a confusing and terrifying hell, to be blunt. I started hallucinating and having delusional thinking as a young child, and when I hit the age of ten things got more out of control. By the time I was 14 I wound up in the hospital and diagnosed with psychosis. Then after a suicide attempt at the age of 15 I was hospitalized at a much more competent facility and I was diagnosed with schizophrenia. I didn't think I was sick, I only realized that I actually have an illness in this past year. It took awhile, but things have gotten better since I got some insight. As for how I got it? I don't know. I was hospitalized this year yet again for a severe psychotic break and maybe it was the Saphris I was on, because after I'd taken that it was like, "oh, I do have schizophrenia." I couldn't stay on that drug though because the atypical anti-psychotics are just bad for me. The older ones give me WAY less side effects than the new ones that are supposedly better. Unfortunately, I've never gotten into any kind of remission. Like you said the meds don't seem to really WORK, they just make things tolerable... but then there's side effects and all that crap.

Did it get worse? Did you know what was going on in your head? Are you living on your own or still at home?

Mine has absolutely gotten worse. When I was 14 I had a feeling something was really wrong, but I didn't know what it was. After the age of 15 I quickly lost all of the little insight I had. I thought everyone else was crazy! Now I have at least some insight into what's going on inside my head, but I still lose insight the more psychotic I get. I still live at home. I've never been able to learn how to drive or anything because even without the hallucinations, delusions, and thought disorganization, my cognitive issues are so bad that I just can't do stuff like that. I graduated from high school with good marks but I haven't attempted college because school can all too easily put me right back in the hospital for psychosis.

If you have anymore questions or want more detail about anything don't hesitate to ask. I have a soft spot for people who had an early onset and for the people that love them. I'm in half a mind to type up my whole story with my illness and post it in hopes that maybe someone would benefit from it.

[punkybrewster6k]

I just want to hug u both! Sheesh!
It seems like it is all the same story! well, not, but u get what I mean.
We are a broken family because her biological father has mental illness but is much better now and is sober. Bean (we call her Bean) lives with me and her stepdad who would do anything for her. He gets it. Even when we are both at the end of our rope sometimes.
The no friend thing really hurts. It cant be easy and I wish there was something I could do for you and her. Breaks my heart. To be honest, those with MI have the kindest heart and are real. I wish people could see this or would take the time to see what their missing out on.
So far, amazingly, Bean has not gotten depressed or suicidal. When she is asked if she is sad she gets puzzled and wonders why people keep asking her that. Its like she is not capable of it. She has no clue of the real world. But she is still young. hasnt even hit real teen years yet. She definitely has thought disorganization and cognitive issues. She is failing in school and always has but is in regular school with a modified work with regular kids. When she gets overwhelmed she goes to the guidance counselor. Grades are modified and she is the quirky, weird kid in school but knows this and doesnt care. As long as she is with others, she is happy even though she has no clue to whats going on around her. Very small schools (500 kids k-12) seem to be easier since teachers watch out for bullying and know every ones parents!
I dont see her getting her drivers license either. She will drive the pick up truck down the road and fields but that is it. And yea, I see her living at home too. Thank you for being so honest with me. It means a lot. I need to know the reality of it all.

[Atypical_Disaster]

So far, amazingly, Bean has not gotten depressed or suicidal. When she is asked if she is sad she gets puzzled and wonders why people keep asking her that. Its like she is not capable of it. She has no clue of the real world.

That sounds just like me at that age. Just like me.

I'm really glad you're posting here. If there's anything I can do to help please let me know!

[punkybrewster6k]

Yes. Try to keep on the sunny side. If Bean reminds you of yourself at this age then you must be the sweetest person. Remember that.

[punkybrewster6k]

She gets out tomorrow. Halloween. They have her on thorazine 3x a day and zyprexa 2x a day. Both high doses.

She stutters and has salad speech now but is more like her old self. Has anyone else been on Thorazine? what was your experience on it? She is just 13 so should I be worried about this med?

She seems to like it but she falls asleep a lot. Hope that goes away soon. She has to be awake for school.

[newtus]

i was in the hospital for halloween when i was 13. very scary.

u need to watch her probably.

thorazine is such a sedative. this girl in the hospital slept 12+ hours in the same chair every single day in the lunch area of the hospital. every.single.day.