My son has made the last step of his medication

Well, they're anecdotal. However things come out for my son, it doesn't necessarily mean it'll work out the same for the next guy.

I keep wondering about that. Let's say my son can put all kinds of self-care and self-monitoring stuff in place, coping skills, etc. How much energy would that suck up when he could do the same thing with a tiny dose of medication? Is it worth it? Or will the effort itself help remodel his brain a la neuroplasticity?

We often talk about the OCD part of his brain that's always scanning, looking for anything that might be going wrong. I understand that cognitive therapy for OCD can make changes to the brain.

Well, my son was really irritable with me yesterday. He was angry, because I told him I wasn't causing his irritability. I won't take responsibility for his emotions. Anyway, it stressed me out, because our last conversation yesterday ended on a sour note. My blood pressure and blood sugar were both elevated this morning, and I know it's because I spent the rest of the day stressing, wondering if going off the medication is the right thing.

I really want to be supportive and give it the best effort for him to get off meds. I know it's not going to be easy. I expect bumps. I need to stop stressing over every little thing. It's not like he was sounding psychotic. He wasn't even all that angry - no yelling or swearing. It was just uncomfortable. Hardly a reason to throw in the towel.

Anyway he called this morning. He was fine. And he did so well at Christmas. It's really stressful for him to be around people, especially certain family members, and he was fine. No problem at all.

I'm just going to throw this out there ....it may not be the lack of meds causing his anger....it may be the increased pressure of the holidays, work and the concept of being off the meds. I know I felt way less secure off the meds....it's hard to let go of that sense of safety.

That's true. The job is stressful. He's always stressed around the holidays. And I sense he has some fear about going off the meds - not that he can't handle it, but that other people will blame anything negative on it and try to get him go back on them. He hasn't told his coworkers, which I think is a good idea, because, yes, it is tempting to blame everything on the lack of medication. I have to actively remind myself that he had similar incidents while he was taking the medication.

How long were you on the medication before you went off it, Sometimes? And how long were you off it?

I was on it 2 years then off it 9 months....most people relapse by 6 months if it's going to happen but there is another small group at less than 1 year....I was so close....but then I was going from 7.5 mg and not so low a dose as your son....I really have hope for him because of that....

I guess the question for me is what counts as a relapse? It's not an on and off kind of thing. It's a continuum. Mild symptoms can be coped with. If you start shading into more serious symptoms, at what point do you say, "Enough. I don't want to go past here." It's a judgment call IMO. The problem with sz, of course, is at some point insight goes.

He told me yesterday that he's worried about what will happen when I'm gone and he can't call on me for support. That may be why he's been calling less. Trying to throw his crutch away before it's taken from him. I told him he'll continue to grow stronger and build skills plus he'll make connections with other people he can call on for support.

For me it was escalation....it's started with knocking but then after two weeks of that it kicked up to music that wasn't there....then someone yelled hey hey hey.....still things I could tolerate but I was losing sleep and that I can't tolerate.....when the knocking wakes you up every couple hours that's a problem. I really went back on because of sleep more than anything....the key is to keep the pdoc informed of what is going on...they will help you make the decision.

That's outside of my control. My son knows what's going on with him, not me. And he talks to the pdoc, not me. So, I guess I just need to learn to relax and let him handle it.

That's exactly it...it shouldn't be your burden....it takes away a lot of the responsibility to just let the pros handle it....it's their job anyway. I think it's a lot like giving meds during a first episode there is a threshold and its more obvious to an outsider...the pdoc will make a recommendation and your son will hopefully follow it.

I'm not sure I agree. I think if I'd left this up to the pros to begin with my son wouldn't have made as much progress as he has. I hope that my role over the last couple of years has been as facilitator, finding a pdoc and therapist who were more willing to work with him on the kind of treatment he wanted.

The reason he has the pdoc who's willing to let him try to go off the medication is that I found one who was open to such things.

The reason he was allowed to stop seeing his therapist when he found it no longer useful is that I was okay with him making that decision.

Most people with dx's of sz and schizoaffective (which is my son's dx) don't get a lot of say in their own treatment. At least my son didn't until I intervened. The system acts on them. My son resisted that. Maybe by now he'd have stopped resisting even if I hadn't stepped in, but in that case I feel quite sure he'd be badly overmedicated right now. The life the mhc seemed to have planned for him wasn't the one he wanted. They might have eventually broken his spirit or they might not have, but why should treatment involve breaking spirits?

In the end, my son may decide to go back on the medication himself. But if he doesn't, and if I ... how should I express it? ... lose my nerve, I'm sure the pdoc and the hospital will take my feelings into high consideration. In other words, if he says he's fine and I say he's not and can provide some examples to back my word up, pressure will be brought to bear on him to go back on the meds. That assumes, of course, that he doesn't have a total breakdown that's obvious to everyone but that he's somewhere in that iffy middle ground. If I get all panicky and decide things are going south, the experiment will likely come to an end.

So, when I say I want him to handle it, I mean I want my son to handle it, not the pdoc. I want my son to take the lead. (Again assuming he doesn't have a total breakdown.)

I think you've just been very lucky in your treatment providers, Sometimes. They've treated you with respect. That hasn't been my son's experience.

And, btw, I'm pretty much my son's de facto therapist. On call all day long when he needs support.

costello... im currently getting services from the county clinic. their intended life for me is to be on disability for the rest of my life (yes they said i will have to be). also to be on heavy medications with high doses. the therapist they have me assigned to doesnt see much in me. she just spouts very generic CBT techniques and not much more. ive fought hard to get more than 30 minutes a month with her and i cant and my dad has to be in every single session with both her and my pdoc. both the pdoc and therapist make me lose a lot of hopes and make me want to trash goals in my life but i continue to see my pdoc because i NEED my antianxiety and my sleep meds. yea i need more than that but i currently take APs as prn. as far as my therapist i still see her at that clinic because 30 minutes a month is barely touching any good amount of therapy. and its all i can afford. i pay for all appointments on my own. like your son - im not getting ANY say in my treatment. im actually not getting any at all. like i stated above with the therapist & pdoc.

You know... I always forget people don't have pdocs like mine...but for me I need to rely on them for stuff outside my expertise.... There isn't enough literature on this IMO...probably the best is determining when to medicate in the prodrome....if you could get your hands on a sips/sops analysis that would be the best guide... Usually those are used by psychologists in fep patients.

Yep. Even a hour a week isn't enough. Like I said my son calls me all the time. You just can't do that with a professional - call them when you need them.

I wasn't happy with the mhc's life goals for my son, nor was he. They seemed to want to socialize him to being a mental patient, like it was who he was. It saddened me what they seemed to think was the maximum he could aspire to.

thats so sad...
and you know what - im very proud of what your son has accomplished. especially being involved right back with the "system" as its called - you know? i hope hes helping others and not letting other people push him aside or belittle him especially if they know his diagnosis.

i really want a new therapist but i just dont think i can afford one at all. i sort of think i might be stuck with this crappy one for a long time. i mean i have the choice of not seeing one at all...but i would like to. idk what to do. i just dont. and im really scared about it. even though i dont regularly take my AP - im very extremely scared to think about what would happen if i didnt have at least my xanax. like im really scared to even think about it. i dont ever want to get off my xanax or ambien. ...i dont even have any of my ambien right now and admit to stealing some from my mom recently...

It was hard for me to have to disappoint my parents. Although they had no right to expect anything of me.

I have never met such inflexible people in my life. The "consumer" gets a label; the label dictates the treatment. Period. At least when the label is sz.

I went in there in the naive belief that they would work with me, and I was trying to represent what I understood my son's wishes to be. (He was pretty confused at the time, but I was going on what he'd told me when he was lucid). They blew me off.

Then at about Christmas time I remember having a conversation with the director of the case managers. She was so rigid. You could see she'd spent years bullying resistant people into accepting her dictates. That's when I knew we had to extricate ourselves from that organization.

When my son was having a crisis at the temporary mhc housing, she gave him two choices, neither acceptable IMO. One was to go to the homeless shelter; the other was to go to the hospital emergency room with a case manager at the house who he had a lot of paranoia/anger toward and who was at the center of the current crisis. I was present at the time and was willing to take him to the hospital, but that wasn't one of the two choices. He had to go with the objectionable case manager. All of this was being dictated through the case manager who was talking to the director on a phone.

So, I took him to the hospital. Don't tell me there are only two choices! (I don't know if you recognize a Love and Logic parenting technique: give the child two choices, both acceptable to the parent.)

It saddens me to think of how many people are in the grip of that system who have no other resources or family to fall back on and are forced to humble themselves in order to receive housing or whatever. They were treating him like a child. It's true that at the time, he was in a really bad place, very confused; in fact, that crisis was precipitated when he urinated on the kitchen wall right next to the office door. But they didn't even ask him why. He'd developed the paranoid delusion that the case manager had urinated all over his clothes. This case manager was the one who gave the meds in the house. They decided he wasn't swallowing his medication, so he had to open his mouth, raise his tongue, etc. He found it humiliating and objectionable. Urinating against the wall was his impotent way of expressing anger and protest. They just saw it as an intolerable behavior that required him to be booted from the house. But they didn't say, "Leave this house." They said, "You have two choices: the homeless shelter or A will take you to the hospital. A, not your mother."

I guess my point is there was this escalating cycle of controlling behavior from them which he responded to with rebellion, and then they cracked down with even more controlling behavior, and he rebelled more. So, you see why it felt to me that the goal was to break his spirit. The only place this was likely to end was with my son's spirit broken or his rebellious behavior escalated to the point that he'd committed a crime. Neither desirable outcomes IMO. He didn't have the skills or resources at that point to step out of the box they were putting him in. Or maybe that's why so many mentally ill people end up homeless. They'd rather have the dignity of freedom to the paternalism of the mhc.

There is a huge difference once you give up control....so for me Inpatient is the closest I got to this and it was clear that they were going to break you if you did anything they considered out of line regardless of normal healthy logic or not.

When I said leave it up to the pdoc to decide I definitely did not mean that level of control....for me they are more like trusted advisors giving me advice on the stock market. They might tell me whether to invest or not but its my money and my decision in the end. Frankly they don't know the outcome and it's just an educated guess and when I've opposed them they've been willing to hold out until some alternate benchmark...they have been good guides so far.... Nurses on the other hand....watch out....they have zero tolerance....it's like 0-100 in a snap escalation.....

I never wanted to disappoint my parents either, and I know my son doesn't want to disappoint me. That's why I try to be very careful whenever I suggest anything to him. He tends to see it as me telling him he has to do it. Then later he gets mad at me, because I "made" him do something.

thats why so many mentally ill refuse getting help. its the control of the workers and the controlled environments that they have to succumb to "or else". theres an "or else" factor in there. it sounds like your son got 1 option and then an "or else" option - which was to goto the shelter. but they mask it as two options - which in itself is pretty effed up.

im so controlled here at my clinic i constantly think of just abandoning it and leaving it completely all the time. but like you said about humbling ourselves - ive given in many times to certain meds or going to the hospital because theyve promised me either better treatment or better meds or saying i wouldnt have to take a certain med much longer. it really pisses me off how much theyve lied to me.

ugh if i didnt have my disability and healthcare on the line i would just probably go somewhere els or walk away completely. idk...but i do know that i have money coming in that helps me and with that comes insurance. both of which i cant get elsewhere right now by myself. even if i got a job id have to work there for like what?...6 months or so til i could get healthcare.

I think my son is managing to get to a higher lievel of trust of his pdoc. For a long time, he thought his pdoc was looking down on him and didn't care. But he'll probably never really trust him. That just isn't how my son rolls. He's truly paranoid. He doesn't trust. Even now he'll sometimes say he doesn't know if he can trust me, and I think I'm the one he trusts most.

Paranoia is a very isolating condition.

...i see so much of myself in your son...in a lot of what he thinks and does...or at least what you tell us about him...

costellocostellos son

My son sees his pdoc today, so that means it's been 8 weeks since he's been off his medication. I wanted to make an update.

He's taken olanzapine PRN three or four times now. A quarter of a 2.5 mg pill didn't help, but a half does. He says it helps put a brake on his thoughts when they're going too fast, and it really helps him sleep.

He doesn't call or text as often or as long as he used to. When he does, he's more likely to say "odd" things - "hearing" someone he knows criticizing him. (I'm never sure if he really hears voices. He describes it as imagining someone saying something.) He also tends to get the idea that "something's wrong."

But he's still at his job - it's been over six months now - and is functioning very well IMO. I'm glad he's using the medication as needed to keep from getting too far gone.

Thanks for the update...glad he's still off, I like the PRN option...