My Son is Not a #)($&*#&( Science Experiment

Well, first, I’m sorry to hear the Zyprexa stopped working. That’s a long time for a drug to work and then just stop. Maybe it’s not that unusual, I don’t know. Do you think it’s possible he stopped taking the pills, if he was just on pills? I wonder if you tried the injection for Zyprexa what would happen, with of course taking pills too until you know…? If you’ve tried that, have you thought about trying another type of injection? It doesn’t sound like you have a choice but to keep him on injections until you find one that works. Maybe the Risperdal depot? The Abilify has an injectable and so does Aripiprazole. Different people respond differently so maybe one of these will work really well for him! It’s possible if you try a new one next time you’ll be pleasantly surprised. You don’t have a lot to lose from trying to switch it, or at least that’s how it sounds to me. Also the Invega Sustenna can go up to 234 mg dose. I thought that was a lot until the nurse told me all of their patients are on the two highest doses. It’s the only ones they keep on hand, the 234 and 156. I think, if I remember correctly, your son just went up to 156 not too long ago. Maybe they’ll up it to 234. A lot of people take that dose and probably went through what he’s going through to get there. Maybe he just needs a lot more. It’s so hard trying to figure this all out and get it right. I hope they make a big change for him soon - I know he’s been struggling a while.

Something else I just thought of, and you probably know. But when my son was taking the Zyprexa he slept way too much. On the Invega he still sleeps 9 to 11 hours a night but doesn’t fall asleep during the day. So the Zyprexa helps them sleep a lot more than the Invega. At least that’s been my son’s experience. Maybe whatever you do, switch the injection or try a different pill with the injection, it can be something that makes him sleepier. My son didn’t benefit from that but it sounds like your son would. I’m not sure what Risperdal or Aripiprazole does for sleep but you can find comparisons online, or hopefully your doc would know. I notice a huge difference in my son when he’s had 7 hours vs. 11. He’s much more pleasant when he sleeps more. He just needs it. I can’t imagine your poor son not sleeping for days.

We’ll see - I would have liked them to go up to 234 mg this time.
Instead, they gave him the 156 mg 1/2 week early. Still, too little, too late - or maybe it’ll still kick in.

I got him to take the Zyprexa for over a month - it did nothing.
When he first started taking it, you could see a difference in about 48 hours when he first started taking it.

Speaking of which, when he first started the Invega, it was like that too. They gave him pills for a few days, then the 234 mg shot, followed in 5 days by 156 mg. He came home the day of the 156 mg shot, had some mild delusions that went away in about a week, then we had 10 glorious symptom-free days before he started mentioning weird things again. So, I know it can work.

The Zyprexa injection is scary, and they won’t prescribe it in the program he is in - and I don’t blame them. Some people have died because the depot released all at once within an hour of the shot. So, you have to be observed in a doctor’s office or hospital for 3/4 hours after you get each shot. That is not going to happen for him - it would be his first reason to not take it.

I believe Risperdal is similar to Invega - Risperdal metabolizes into Paliperidone. I do like that it’s an every 2-week shot though, so maybe easier & faster to dial in.

I’m just very frustrated right now. It’s hard to watch him steadily decline, and decline fast. They can screw him up, but I’m the one left to pick up the pieces.

My son can take 25 mg of Zyprexa at times & walk around like he didn’t take a thing.

He’s got a crazy high tolerance for drugs - he always needs the maximum of everything & sometimes a little more.

He didn’t hate the Zyprexa because it made him sleep too much, or gain weight.
His complaint was it made him feel too numb - so that he couldn’t enjoy anything.

I will say that the Invega does not do that. As much as I complain about it not being effective, I have seen a lot of his personality come back with it. He laughs, he makes jokes, he’s generally a pleasure to be around. Even now, he’s lost in his delusions & pacing around laughing to himself, but he just took out the trash when I asked without complaining, we’re not arguing, he’s not angry or violent.

So, there are some improvements. But, they can’t give him clarity & peace, then take it away like this. And, I do think that at this point, they took it away. It may not have been sustainable, but a higher dose would have stabilized him for awhile.

@JulieAnn - I’m so bad about just answering and not thanking people.

Thank you for your suggestions. They’re all good, and things I’ll keep in mind. Everyone’s opinions here get added to my mental checklist of things to think about.

I’m just so scared he’ll be one of the few people that won’t be helped long-term by medicine. The intensive treatment program he’s in does work with people like that if that’s what the future holds, so he’s in as good of hands as he can be in - although I would like a more aggressive medication program.

They want to go with the less is more approach, which I like too when it works. But, for my son, it’s always been more is more. Maybe they think that’s part of the reason he’s not compliant.

Oh, another reason he’s not compliant is that if he can’t “feel” the drug working, he thinks it does nothing. And, if he can’t get a little high off of a drug, he doesn’t want to take it. That’s a huge deal. The only exception is aspirin or allieve if he has a headache or something.

It’s nice you’re finding things about the Invega that you do like. Maybe he just needs a higher dose and that will do the trick. If he has a high tolerance for drugs then that may be all it is. Maybe once he’s stable on the high dose for several months you could try to come down just a bit. Although it scared the crap out of me when my son went down. It worked out fine and he was at the 156 dose for, like I said, over 6 months. When he dropped down to the 117 it was fine. I think maybe once they’re stable and have it built up in system for a long time, stepping down can work.

You know, now that you’ve mentioned this about the Zyprexa injection I remember reading that off a post one time. Yeah, that’s pretty scary. There’s too many safer drugs out there to be chancing that, for sure. I’m surprised it’s still on the market actually. So thanks for that reminder.

I can’t believe the Zyprexa didn’t make your son sleepy. My son slept constantly. But it sounds like you tried that one all you can if you’ve already tried pills.

Maybe the 234 mg dose will be the magic dose for your son. It is a nice medication, if it works! My son smiles and laughs and has come back a lot on it.

The Zyprexa makes my son sleep a normal amount, sometimes. Rarely too much.

But, he’s never been a great sleeper, not even when he was a baby. Infants are supposed to sleep about 16 hours a day & be awake & alert for about 8 to start off. Maybe not even that much. He had it backwards.

He also started getting his days & nights mixed up as a child, and seemed to have more of a 36 hour sleep cycle - stay up for 24 or a little longer, then sleep for 8 to 12.

Maybe that’s part of his problem. Chronic sleep problems aren’t good for the brain at all.

When they first put him on Zyprexa, he had stayed up for 10 days straight.
This past year, every time he hits the 5-day straight mark, he starts asking to go to the hospital. Then, he doesn’t want to be there & they do an involuntary hold on him because they say either he’s not capable of ensuring his own safety or he’s too incompetent to be able to consent to treatment. He’s never been a danger to others or threatened to hurt himself.

Interesting about his sleep patterns throughout his life.

What a puzzle it can be to figure it all out. He’s lucky you work so hard at keeping him as healthy as possible. I feel bad for people who have no one in their court.

Me too. Although, sometimes, I think that he would do better if I wasn’t so protective.
It’s very co-dependent and I definitely enable him at times.

I’ve got definite control issues & need to let go a little at some point, while still being there to help out.

Yeah, I hear ya. I have that going on too, but I feel at this point I’m doing what I should be and what I would want someone to do for me. But I hear you loud and clear about letting go at some point. I think it’s hard to know where the line is sometimes but it’s still necessary to let them do things on their own as much as possible.

See if it makes sence to write to Dr. about your concerns and hand in your letter tomorrow cause at best the doctors are just humans and forget.
Besides, notes and letters in his file make your concerns way more tangible

What agony this disease causes! I can empathize with your frustration.

And you summed it up perfectly when you said, “my son is not a science experiment!”

Unfortunately, after reading other replies, it occurred to me that

we who struggle to help out family members with schizophrenia (SZ), are caught in a situation that is not easy to fix.

Researchers, M.D.s, psychiatric nurses and staff, community mental health teams are all struggling to help people with SZ.

The meds don’t always work. It is a wild roller coaster to keep them on them when they do.

What endless horror this disease causes!

Prayer and support coming your way.

Maple Woman

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Today’s update.

Another night of no sleep - he has periods where he barely communicates, some periods where it doesn’t seem like I’m getting through, then some where he has this obsessive idea that he needs to write something specific, in yellow, on the outside of our house. A sign won’t do - it has to be on the house itself.

It’s pouring rain here. He went out barefoot & walked up & down the road in front of the house for about 10 minutes before he came in & said the house was going to flood. I asked if he wanted to go to the hospital to be safe, and he said yes. I asked him if he wanted to go no matter what, even if it stopped raining and he said yes. (later he said no.)

His case manager came by in the meantime and I’m so glad he did so they now know how fast he can get sick. He can do all the paperwork for an involuntary hold if we need to and even get the paperwork from the magistrate, so that’s good - much better than sitting with him for hours while we wait on all the approvals.

However, when he said he didn’t want to go to the hospital, he agreed he’d take something to help him sleep. So, I gave him the new pill that they just gave him for sleep plus a 6 mg Invega. And, if he’s not slept by tonight, I’ll do it again.

I told the case manager that’s what I’m doing & I’ll deal with the doctor next week. I’m sure he’ll tell her, but all the hospital will do is load him up on Invega while he paces like crazy and stays up anyway.

That’s the plan. If he still won’t sleep, that’s he’ll probably have to go to the hospital whether he wants to or not at some point.

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hugs I know how you feel. Sometimes you just have to put your foot down and get angry and demand things because honestly, some doctors just don’t care or pay enough attention to their patients, the patients’ feelings, thoughts, and behaviors. So whatever you have to do to get him the right medication, do it. Those doctors aren’t the only people to talk to, make a complaint if you have to the hospital manager or any department. Write a letter to the governor if that’s what it takes. I haven’t gotten to that point now, but I’m currently writing on a legal pad notes for the doctor to the read so that they change the medications to something that works. They won’t even read the progress notes I’ve written in detailed and objectively, so now I’m just going to be like, “Here. I want you to do this. I won’t explain why unless you ask – but you haven’t asked. You don’t live with the person. You don’t ask about their feelings or they’re experiences. So you’re a doctor and you’re here to listen and ask questions. And if a medication is not working, well guess what? You better change it because that is your job. And if you don’t your job, you get fired and then someone ends up in a hospital dead or alive unnecessarily because you didn’t do your job.” I didn’t actually write that, but I’ll tell him or her that. I can’t believe he doesn’t even get the same psychiatrist each time, it’s always a different one, so how are they going to know anything about the patient? :rage:

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He finally gave out about 8 PM & went to sleep - it took about 2 hours for him to rest easy & now I keep stopping in the doorway to make sure he’s still breathing.

Hopefully, it’s from the shot kicking in instead of the extra pills I gave him today.
I guess we’ll see what he’s like tomorrow.

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That’s good, sleep is necessary for everyone. Please continue to update us on how his treatment is going and his progress.

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OMG! I had a similar experience with my son - the shot only lasting 2 1/2 weeks. w now takes the pill every night and has been stable. The also takes 1000mg depacote and 10mg haldol twice a day. He used to be on just latuda which was great until it stopped working.
Meds are a crap shoot darling! I am lucky to have a psychiatrist who listens to me. I feel your anger and frustration. Bless you in this o so hard journey we have

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Well, we’ll see if she listens to me after this.

He went out earlier walking the neighborhood in just his sock feet & after 30 minutes I took the car looking for him because I kept picturing him getting hit by a car. He was almost back to the house, so I picked him up to go get some gravy biscuits at Hardees, one of his favorites.

So, we get there, and we’re in the drivethrough, and he gets out the car & won’t get back in & is wandering around, so someone calls the police. They were nice enough to him - just wanted to get him safely in the car then they let us go after finding out what’s going on.

I don’t get a mile away before he starts trying to get out the car again - while it’s moving, although I had slowed down. He walks a little while then gets back in the car & we get home.

I guess we’ll see if he calms down or I have to call the crisis team. I know I should be calling already, but I haven’t given up hope that the meds will kick in. I gave him 2 6mg Invega pills yesterday (spread apart) and 1 this morning - against doctor’s orders, but today, the doctor can go f-- herself.

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Maybe tomorrow will be different, but today I give up.

We spent half the night in the emergency room because he thought he was going to die because he drank about an ounce of purple listerine (the new cinnamon flavor) early in the morning. Plus, he took his Neurontin (that’s yellow). Yellow & purple make black, so that must be cyanide.

He was complaining constantly about his hands being numb & hurting, so I figured it wouldn’t hurt to have him checked over & it would reassure him that he wasn’t dying.

So, after hours there, and everyone from the front desk people to the nurses to the doctor telling he wasn’t dying, he still thinks he is. They gave him 10 mg of Valium to calm him enough to stay in a room. It worked, but he got pretty agitated as he was coming off it later.

After being up for about 28 hours, he slept about 4, and only because I let him lay in my bed & I held his hand so I’d know if he started to die. This morning, he said he’s still dying, and it’s because I keep making him get the shot, so I’m done.

He can take his meds or not. If he doesn’t. Today I don’t care. No one listens, no one helps, he won’t help himself, and I can’t do it all. Not today.

I’ve had no sleep, I feel like crap, and I don’t know if I’m more mad or sad. All I know is that I’m something. The only hope I have is that this shot will get him somewhere good, but we’re on Day 4 & I don’t see it happening.

EDIT: He’s back in the hospital again. Different one, so maybe better results.

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Please keep us updated.