Family and Caregiver Schizophrenia Discussion Forum

Daughter 16 sz spectrum

Hi all. I’m new to this forum. My daughter has been having visual and auditory hallucinations on and off since age 12. I believe it was triggered by a prescription medication called Tagamet. A few months ago she was dx schizophrenia spectrum before that it was schizoaffective disorder and started out psychosis nos. She just had borderline Intellectual functioning added to her dxs. I don’t agree with the BFI dx because she did test low normal IQ 93 on a different test previously.

At the age of 12 she was pretty normal besides anxiety and then the hallucinations started. When the hallucinations started she asked for help and demanded to be hospitalized. When she came out a few days later she was on lexapro and geodon. Later switched to abilify. But she was quite different. She started having behavioral problems at school, experimenting with drugs and risky sexual behavior. She was on abilify for 3 years. In and out of hospitals for suicidal ideation but they never changed her meds. They said her behavior was just the progression of her mental illness.

About 8 months ago she was finally switched to seroquel, clonidine and she takes benztropine for the seroquel side affects. She is doing much better. She is on a really low dose of seroquel still having some side affects. I would like to get her off the benztropine which would mean switching the AP. I also want to try Ritalin to help with school because she’s basically still at 7th grade level academically. She has been Dx with inattentive adhd since age 8. But maybe it wouldn’t be a good idea to switch since she’s doing so well. She does still talk to herself everyday. She pretends she’s on her cellphone. She also still has a little paranoid thoughts. Like feelings of being watched and fear of seeing more hallucinations and not knowing. Some of them seem normalish to me for someone like myself with anxiety. And I wonder with the Ritalin would the benefits out weigh the risk?

Also I think she may have had akathesia for a while from the abilify but her doctor disagrees.

These are just my thoughts on the medications and me trying to get some perspective on the last few years. Sorry if I’m all over the place.

Any thoughts?

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Welcome to the forum @Bluebird , I am glad you found us. My situation is very different from yours, as my daughter was over 30 when her sz started. It was 2.75 years before the correct medication for her worked well enough to bring her a good new normal. She had 5 hospitalizations and at least 5 different APs, but she never stayed on any medicine (mostly unmedicated for those 2.75 years, until the long acting (30 day shot) medication started 1 year ago now). I can’t really give you advice other than to keep coming here and posting and reading and keep loving your daughter and trying to help her. Talking to others on this site will help you to not feel so alone in this battle.

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Interesting. Are you referring to the seroquel causing dystonia? Or the ect?

My daughter has elevated prolactin and mouth movements. The doctor hasn’t labeled it but I assumed the mouth movements were dyskinesia. I haven’t heard of dystonia. I read benztropine shouldn’t be used for dyskinesia. I don’t know if that’s true. Maybe it’s dystonia she has. I just can’t see her continuing on the seroquel and benztropine with these side effects. But then I’m scared of what comes next because it’s been such a rollercoaster, as we all know. I’m worried the benztropine is causing cognitive problems but that could be the sz itself.

Ugh so many worries and questions. Also thinking of switching docs. My daughter is currently seeing a pmhnp.

I understand about worrying, it is a constant stress trying to outguess sz. If you feel you should switch docs, you might be right, and perhaps a 2nd opinion would be a good idea. Trust yourself.

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common, mine eat the hell out of it…

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Thank you. I hope your daughter is doing well. I think this site will be helpful. I’ll have people to talk to.

I’m not ashamed of my daughter having sz but I’m afraid to talk to people about it. I don’t want my daughter to be stigmatized or left out. Plus I figure if she wants someone to know she’ll tell them, except for my closest family members I don’t really talk about it in “real life”.

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@Bluebird , it took me a long time to figure out that talking to anyone about my daughter and her illness, except for her doctors, was the wrong thing to do. Her brothers, her church, her friends, my co-workers, etc… all of them didn’t understand, and couldn’t offer any real help. Some advice was outright destructive, especially from those who had NO CLUE what active psychosis is like.

NAMI, Reddit’s sz forum, and finally sz.com were the only places I found compassion and GOOD direction. (Also from good doctors, police and a compassionate judge.) I suggest you keep the information about your daughter’s struggles with this illness restricted so that only those that NEED to know are told about it. The stigma is unfair, the fear of others is real even if what they are afraid of is unreal, and the exclusions can almost never be repaired once they begin. I hope your daughter doesn’t confide in anyone who will hurt or reject her also. Gossip is just terrible, especially for young people.

I’m really glad you found this site.

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I agree with oldladyblue that there are only a few people who can give you good advice about psychosis. Especially with adolescent counselors, we got so many conflicting and sometimes harmful recommendations. My son is almost 16, and this year is better than last because I decided to make decisions based solely on what I learn on this forum. And on input from my son.

Best wishes!

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Clozapine gave my grandson his life back. He no longer lives with me and is working fulltime. I had to fight to get it. But he is back

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