I am a father of a daughter with schizophrenia diagnosed a year and 3/4 ago at 17. She has has multiple hospitalizations and is impulsive and makes half hearted suicide attempts when upset, even over trivial things. Needless to say, it has been a very stressful rollercoaster. In the initial stages she was ok with abilify and selexa and even graduated from high school. over the summer she decided to stop taking her meds due to weight gain and eventually seriously relapsed in the early fall. Since then it has been pretty much non-stop psychosis. In May she was switched to Invega after a two week hospital stay. Unfortunately the injection which seemed promising at first no longer seemed to work. She became more manic and impulsive and even the “calming” combo of Halodol and Lorezapam no longer had any effect. She started receiving delusional text messages to kill herself and called the police. The next day things were not going the way she wanted them to so she went and laid down on a busy road. Fortunately some good samaritans stopped their cars and prevented her from being run over. At present she is in a psychiatric facility on a two week hold. we can deal with all of the delusions and such but her impulsive suicidal ideation is a source of huge stress. Any thoughts on dealing with this would be much appreciated.
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They tried my son on Invega after his previous meds stopped working (they had worked for about 8 years) - it would look like it was working, then give out on him, they’d up the dose & we’d repeat - with a hospitalization every time it gave out & he went manic. He thought he was God, he wouldn’t lay down in the road, but he’d wander around in traffic or just stand in the middle of the road - all kinds of things.
The last time, I asked that they try Clozapine. It’s apparently the drug of last resort, it can have dangerous side effects, but it’s worked for him as it has worked for many.
The other thing that helped some before we got to Clozapine was a mood stabilizer since he has manic symptoms. It sounds like your daughter does too, but it looks like they’re giving her an Antipsychotic & a Benzo?
Maybe they should drop the benzo (my son was on them for years - they work, but they’re addictive and end up being like liquid alcohol) and try a mood stabilizer while she’s in the hospital?
The first one they tried on my son was Trileptal and it made a huge difference within days. He couldn’t take that with Clozapine, so now he’s on Neurontin.
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Did it work for your wife or daughter at first? Or they just didn’t respond at all?
I’ve been following your story, and in the back of my mind I have this fear that the Clozapine will give out on him one day & he’ll have no other med to turn to - and I’ll be in your shoes.
I’ve never heard of Saphris before - I’ll go take a look.
So far, I’ve always had really good luck getting him help. He’s in an intensive community treatment program here now and the case managers there have really fought for him to get services, even when he hasn’t wanted to accept the help.
The hospital staff at two different hospitals have been more than willing to help, and they’re training all of our local police officers in how to handle the mentally ill (it took a few deaths and a l local group of parents to push for it, but it’s happening.) We also had one of our state senators get stabbed repeatedly before his son killed himself - all because there was no bed for him. So far, I feel really lucky to live where I do, although I know it can get to a point where no one can help him no matter how much support there is.
EDIT: I also have to wonder if my son does not have SZ exactly - he could “just” have a really bad case of Bipolar I. Before this past year, he would have manic periods where he couldn’t sleep and he would go full-blown psychotic after a few days, followed by long periods (a year or more) where his “only” symptoms were the most extreme anxiety you could imagine.
He developed an opiate addiction (pills not heroin - I have no doubt he be just like your daughter if he was social enough to have a hook-up) then was on suboxone & benzos for about 5 years. It seemed to keep the psychosis away, but when it came back when he would try to taper off the suboxone that he hated, he quit it all cold turkey - then we started the worst year of our lives that we’re just coming out of.
I wonder how much the cold-turkey quit of the suboxone had to do with how ill he got. Even the suboxone experts couldn’t explain how he had no physical withdrawal but went totally off the reservation mentally and lost all insight for the first time.
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It’s been really good for my son with no bad side effects.
He says he can’t even tell he’s taking it, but I sure can. He’s went from being like your wife, ranting and raving - or sitting there laughing to himself over whatever delusion he’s caught up in - to pretty normal other than he has a set delusion that he’s psychic.
The change was fast too - from totally psychotic & manic to what I guess is his current baseline in about a week.
If only they had something for his social anxiety, he’d be set - nothing seems to help that.
yea, each person requires custom meds, someday a DNA pill tailored to the individual…
No advice, really, just empathy.
Teenagers are so volitle anyway; can’t imagine what it would be like to have a severe mental illness at such a young age.
That said, her age may work to your advantage. You probably have better access to her docs, records since she is still a minor. My husband was in his late 20s when he got sick, and I had no access to his healthcare team unless he allowed it, which didn’t happen much.
We went through an endless succession of doctors and medications. Injections were not an option yet. One drug, made him blow up with weight gain. He gained 50-75 lbs (!), and we discussed it and he switched meds. I didn’t want him to develop diabetes in addition to sz! So I understand your daughter’s concerns about that side effect.
I hope you are able to find appropriate care for your daughter! Also, kudos for you in her graduating high school! That’s definitely a milestone no matter how it was achieved.
I think bipolar and schizophrenia are on an overlapping continuum of the same disease. I heard the Europeans call it a spectrum. But sitting there laughing to himself just screams out schizophrenia. Been there, done that, still do that from time to time. People in group therapy did that.
I agree, but he only has that happen when he’s about 5 days into a manic episode.
And, even people without any mental illness can have psychotic symptoms if they stay awake for 3 to 4 days straight.
So, it’s puzzling to me.
I agree with the Spectrum description because most people don’t fit neatly into a single diagnosis.
Bipolar runs strongly through his father’s side of the family - I know because people have that diagnosis.
In my family, there were less labels - people were referred to as “nervous” or having a “nervous breakdown” by my grandparents generation. I don’t know that anyone in my parents or my generation had any type of psychotic disorders.
A person with Bipolar Disorder can also have psychotic features; this usually leads to individuals having multiple diagnoses such as Schizophrenia, Bipolar Disorder, Schizoaffective Disorder.
Regarding Sapharis, that was the first antipsychotic my son was given and after he became noncompliant with this medication, it no longer worked.
@slw, I have the same concern about Clozapine. Although my son is on Invega Sustenna and Trileptal, I believe Clozapine might be a better choice for him but if it stops working, what’s next.
@wabus44, this is the scary part of this disorder. Hopefully you can find a psychiatrist who is invested in your daughter’s success and willing to find the right medicine cocktail to stabilize her. If she is not stabilized, demand a meeting with the psychiatrist and state your concerns because her well-being affects your life the most not the psychiatrist.
I really wanted the Invega to work for my son. And, at first it seemed to be the bed medication he had ever taken. Then, it gave out on him earlier and earlier until even the 234 mg shot wouldn’t hold him. In the 6 months he was on it, he went to the hospital 4 times - once to start it, then again when the maintenance shot wouldn’t hold him, then again when the 156 mg wouldn’t hold him, then again after the outpatient doctor raised him to 234 mg and it was like they shot him with water - no response to it at all.
That’s when they put him on Clozapine and he’s been home for almost 3 months now - the longest period in the past year. He still has some delusions, which I’m starting to accept may be fixed at this point, but no more manic periods or paranoia.
They’re keeping him at a very low dosage - 200 mg/day. To be honest, I’m surprised it’s working at such a low level since the lowest therapeutic recommendation is 300 mg/day, but it gives us lots of room to go up. And, by the time it stops working, maybe they’ll have something else that’s better. Zyprexa worked for him for 7 or 8 years.
My son was on Zyprexa for 60 days to give Invega Sustenna sometime to work. He seemed stable on Zyprexa but his appetite increased tremendously; he gained a lot of weight and he is naturally a thin, muscular guy. I have to administered his oral medication (Trileptal) because he is not consistent.
My son is naturally thin & muscular too, but he always seems to gain weight on any anti-psychotic that works for him.
When Zyprexa stopped working for him & he went off it completely, he literally lost 60 to 80 pounds in about 3 months.
On Invega, he only gained a little weight, which he desperately needed, but it didn’t work.
His weight is back up on Clozapine, but otherwise it’s working great. It’s still early so maybe it will balance out for him.
I am strongly considering Clozapine but the clinic he goes to just changed psychiatrist again so I have to wait until we have a more stable provider. Since he is under court order to take his medication, now is the time to make medication changes…
I’m not sure how well it would work to start Clozapine outside of a hospital setting.
They have to start them off at 12.5 mg/day and slowly go up, but they can go up faster under constant supervision.
They took my son up to 150 mg in a week inpatient, then the doctor brought him up another 50 mg after 2 more weeks, and he’s been there for a couple months now because he’s responding pretty well. She said she wouldn’t bring him up more than 50 mg a month outpatient. I don’t know if that’s standard or not - they’re pretty conservative where he’s going now.
The minimum therapeutic dose is supposed to be 300 mg/day - some people go much higher, and some people stay really low like my son. I was expecting him to need more because he was always on the highest possible does on all previous medications.
He’s about halfway through the weekly blood tests and he hasn’t complained too much - but I’ll be happy when it goes to every other week.
All in all, it’s been pretty smooth though. He takes it twice a day, he’s had some weight gain but none of the tremors he’s had on other medications. He drools a little at night, but it’s better than the dry mouth he had at one time. He sleeps a little more, but not around the clock - and that’s way better than staying up for days on end.
Hopefully, they transition your son slowly if they switch him to Clozapine so they take him off one drug as they bring him up on this one - if you guys decide to try it. My son is pretty much symptom free now except for some delusions that may be fixed at this point. There’s a few threads hear about Clozapine. Some say that they are still seeing gradual improvements years into Clozapine - that’s what I’m hoping for.
I will keep you posted. His biological mother is on Clozapine and she takes 300 mg at night. I’m not sure how long she has been on it but she has not been hospitalized for a long time. Thank goodness.
My son is 17 and has attempted suicide 3 times now. He is presently in a juvenile jail facility for choking his dad and going after me with scissors. I wish I had some great answers to give you, but ours is just taking it one day at a time. We have tried therapy both for us and for him. I didn’t find it terribly helpful for him, but I think that was the therapist. Perhaps we’ll try that again at some point in the future. His meds were recently changed (from Abilify which I think caused the agression). He is now on Zyprexa and Tripetal, mood stablilizer. I think the key is if you’re seeing increasing behavior whether it is agression, self-harming, whatever, perhaps it is time for medication change again. Whatever they are on is not working correctly. I believe, and others may correct me, if her meds were working correctly, her delusions would be lessened, if not eliminated. I completely understand and sympathize with what you’re going through. My son’s voices actually started when he was 7 1/2. The p-doc he was seeing then (for his severe ADHD) didn’t want to stick a label on him at that young age, so she just added addt’l meds to his regimen. We’ve been dealing with this pretty much since then. My husband is bipolar, so I have two in my home with mental illnesses. It’s a lot, but I keep my sanity with my faith and hobbies (gardening mostly). Hoping you will find some peace soon and the right solutions for your daughter.