My son says maybe he met someone in the hospital

Family
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I think you’ve done absolutely everything you can to support your son. Giving our children a quiet place to recover in a respectful environment is the best we can provide. You’ve done that and have miraculously involved yourself in his treatment and that is huge.

We are going to see my son today. He has been calling home a lot and talking about going back to school full time and living on campus. I told him those were decisions that were not up to me. I also told him about Dr. Fresce’s video and that he could go anything if he set his mind to it but these were goals he would have to work hard on. He said he wanted to try.

I keep mentioning the group home and how many people like it and stay the entire 8 or 9 months there.
He listens. At least he seems to be coming back and that is positive. It would be closer to campus and on the bus line.

We keep going back and forth on that little house next door and that would give him privacy and us a peaceful home. I can argue both sides and realize not everyone has this option. I am grateful but it is a big decision also.

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I thought your son was 22, it must be someone else’s son I’m thinking about them. He does have an adult psychiatrist now though, does he not? I guess it must have been different times back then because now it’s super easy and quick to see a psychiatrist. That makes sense I suppose. I’m sorry that you’ve never been able to get an official diagnosis for either. Does your son think he has psychosis at all?

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I understand; I guess I just need logic to justify an action for it to make sense in brain, such is autism. I apologize if I’ve upset you. I hope he gets better soon.

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No worries - it was late, I was exhausted, and I know you’re frustrated with the set of doctors you’re working with now.

I figured I was getting you stirred up, so I needed to leave it be.

As far as easy to see one, at that time, no adult psychiatrist was willing to see him since he was under 18. I called every single one in the phone book, whether they took our insurance or not. And, the ones who were, had to put me on a waiting list.

He does know that he’s had psychosis in the past, he’s just not seeing it now.
The girl he was talking to in there “hit the crazy button” according to him. Apparently she is psychotic, and she has a think about people using cloking devices (to go invisible) and steal her stuff. She yelled at him, then later apologized. I’m going to use this later to talk to him about some things.

And, it’s funny. When he talks to the doctors, he’ll usually start off with, I know this sounds crazy but …
So, there’s some doubt there. With me, I think he wants me to tell him that I believe him so it reassures him.
I can’t do that, but I always let him know it’s more of a I have no idea than he’s wrong.
Except for when he says he’s Jesus, or anyone else. That’s the line I’ve drawn - I just calmly tell him he’s him and no one else. Then he’ll ask me how I know, and I’ll tell him. Then he says maybe I’m right and he leaves it for a little while.

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Thanks. That must have been nearly a decade ago, I think that there has been some progress in regards to mental health treatment. Actually his new psychiatrist is not so bad and he decided last minute not to do the therapy. Yeah, it’s best not associate with people that can emotionally hurt him or be a bad influence on him. That’s true, there’s a fine line between emotionally supporting a person and leading them on about beliefs if one really does not believe so.

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Well, the paperwork finally indicates a paranoid schizophrenic diagnosis, but he’s home.

They upped his Invega Sustenna shot from the 117 mg to 156, and if I’m reading it right, they’re giving him 6 mg orally twice a day.

I am not yet seeing the major recovery I saw before, so I’m going to hope for gradual changes over the next weeks or months.

I’m glad to have him home, I don’t know that they could have done any more for him inpatient, but I can’t help but be a little disappointed. I’ll try to post as I see improvements.

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It took a long time for my son’s diagnosis to stabilize. It has remained Schizophrenia, Paranoid type for a couple of years now.

I agree that the specific diagnosis isn’t nearly as important as getting treatment for ‘whatever’ is going on. The brain still holds a lot of mysteries, and young people’s brains are still developing into their twenties.

I hope your son will actively participate with the outpatient program. That has remained the struggle with my son. He will not engage in services outside the hospital.

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I’m glad your son got to come home and that the shot is still an option for him. I pick up my son tomorrow and they didn’t mention the shot. They told me to talk to the doctor abou it on the 28th. Seems like they have changed his diagnosis to bipolar with watch for PTSD. He was put in 5 mg Haldol. Sigh. Have a good evening everyone.

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You know, maybe he’ll like the Haldol?

They use that for sedation dentistry, so maybe it’ll give him a nice, mellow feeling and he’ll want to take it?

My son says the Invega does nothing & that’s why he’ll take it - because it doesn’t matter.
That’s what he’s saying today anyway, and he did take it, but quickly reminded me he’d already had the shot.

We went to a few stores tonight & he said he felt OK shopping - I reminded him that he wouldn’t leave the house before when he wasn’t getting enough of his meds.

I certainly hope a 156 mg/month shot plus 6 mg/2Xday does something for him.
That’s 492 mg/28 days.

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Who knows? When I saw him Sunday he said you do know that Haldol causes brain lesions, don’t you? I said no, where did you hear that? He didn’t say.

He just called and asked if I could pick him up at 11:00 sharp? Then said you can leave now if you want. That’s my kiddo. I said Well they have to get your medicine ready and he said they are doing that now. chop, chop😄

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I heard a lot yesterday too.

I’m better, right? Yes, you’re better.
Well, how much better do I need to be?

I think maybe they get together in the hospital and edge each other on a little bit, then there’s the excitement of getting out & testing the boundaries.

I told him to try to get some sleep when I went to bed last night.
His response: Why? What if I stay up a couple nights and nothing happens, then what?
So I had to explain that it wasn’t him not sleeping that bothered me, it’s what happens to him after he doesn’t sleep for long enough - and that he doesn’t like that either.

Hopefully, everything settles down after a few days of being home.
He was deep asleep when I left, and he did take his meds last night, so I’m just going with it.

I feel a little better now, but all morning I felt like I had a brick on my chest.
Between him pushing the edge & finally seeing PSZ in writing, it was a hard day - and I thought I was completely prepared for it.

Thinking it apparently is nothing like seeing it written down.

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Slw, nothing can prepare us for that. But as I’ve heard, don’t marry the diagnosis. Take care

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I know - I’ve kind of been preaching that on this thread - my head knows it, but today, my heart doesn’t.

Or at least it wasn’t - I’m feeling better.

I’ve gotten so I just let my body go with that sinking feeling until it’s over with.
I’ve had lots of sugar this morning so that usually fixes it.

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Thats okay @slw, dealing with this illness takes alot out of us, just go with it.

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The actual diagnosis hit me hard. I had paperwork with a previous diagnosis of major depressive disorder for my son in my hand. The doctor just took it out of my hand and said “this doesn’t mean anything”.

After so many years of trying to figure out what was going on with him, constantly restarting his life in another new job, another new apartment, there was a tiny, tiny bit of relief to finally know, mostly it was a huge sense of loss and trying to get my brain around the enormity of the scz diagnosis.

take care of yourself.

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Amazing how a thread on this forum can bounce around in so many different directions, just shows how passionate we all are about learning everything we possibly can about these psychotic illnesses.

I remember my daughter’s diagnosis of sz. She had just turned 15. It literally blew our world apart. All the hopes we had for her lay in ruins and there seemed no possible way forwards. Everybody hopes that their kids will be happy, academically brilliant, have a great career, loads of money, a big house, a terrific marriage, and the perfect children. We take it for-granted that they’ll do things like socialise with friends, pass exams, live independently, learn to drive, experience sex, and do all the other normal things of life.

What we’ve learned since the day we were told that terrible sz news, is that the diagnosis is a boundary. We’ve learnt to forget all the previous hopes and dreams we had for our daughter and at the beginning focussed instead on much smaller goals, like her being able to go out for dinner and order food, use a bus or train, or go to a movie and watch it all the way through.

Once the psychiatrists found a drug cocktail which seemed to agree with her, our daughter gradually gained the strength to achieve all these small goals, and that gave us all strength and more importantly, hope.

Over the last 14 years, the goals have grown and she’s just been an amazing person, achieving so much more than we dared to dream at the beginning of this journey. She has her own apartment and has had a few relationships with guys, one of which lasted 8 years! She’s tried sitting exams but failed miserably because of the stress, so she persevered and found some courses assessed purely on assignments. She’s completed these courses, passing with flying colours, and has the academic certificates she thought she would never have. She’s had a couple of jobs and recently started at University.

But (and isn’t there always a but?). Although there are rare exceptions, sz is a lifelong illness and it’s inevitable that chemical and hormonal changes, gradual ineffectiveness of psychotic drugs, and stress events, lead to relapse. Indeed, she relapsed about a month ago and is currently in hospital. We’re seeing small signs of recovery as she struggles to find her way out of the fog of delusions and hallucinations. We know she will recover, we don’t know to what level, but one thing is for sure, she will continue to achieve. For now, we’re readjusting those hopes and dreams once again.

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Thank you for your comments. That was quite a run and a lot of achievement in that 14 years span. It sounds like she has wonderful support and good doctors who are willing to try a different medicines and not settle. It is encouraging to hear that she’s done so well living independently. I hope she’s out of the hospital soon and continues to make strides despite her diagnosis.

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