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

Family
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This is just a rant = please ignore if that bothers you.

The hospital doctor puts my son on Invega shots plus supplemental Invega pills.
The outpatient doctors take him off the pills - even though the f’ing shot continues to give out on him right at or before the 3-week mark - every single month that he’s been on it. Now, that’s 4 months in a row.

I’ve explained it verbally, I’ve written it down on a timeline, I’ve given him the pills and demonstrated how good he could be.

Still, they insist on taking him off. I get their reasons - they want him to be on the shot only because he is non-compliant on the pills. Only ask in a PM how I get him to take them. And, they don’t want to overmedicate him and have him refuse treatment.

I get that. I want him on only the shot too, but if reality is showing us that it’s not enough or it won’t last enough, it doesn’t really matter what anyone wants.

So, last Thursday, they take him off the pills. It was day 18 into his previous shot. His sleeping was starting to drop, but he was only talking about mild delusions now & then, he wasn’t paranoid, he wasn’t hallucinating, he wasn’t having any bizarre behavior.

Today is Tuesday. That’s only 5 days later and day 23 into his previous shot. He hasn’t slept for at least 48 hours, but I suspect it’s more like 72 or maybe more. He alternates between crying and laughing, from saying he’s Jesus to saying he’s the Grim Reaper, people are now coming onto his computer screen instead of the TV to talk to him, and he can do astrol projection and that’s how he’s psychic.

They called in something to help him sleep yesterday - didn’t do a f’ing thing. Not that I expected it to, but I’m such a dummy I hoped it would.

So, I’ve already cried today. Wouldn’t have, but couldn’t control myself when I left a message on the nurse’s voicemail. But, what I really want to do is scream - Give him the #!@($&*(&@#@)() meds he needs - that you see have worked - he was not having side effects when you saw him - HE IS NOT AN EXPERIMENT!!!

Don’t leave him stuck in a nightmare where he has visions of people having terrible things happen to them and he thinks he’s responsible. Cancel the screaming part - I want to smash things and hit people and rage against the world … it’s not fair & not right, and now I’m crying again.

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Dear @slw, I hope your son receives the treatment he needs. To me, it just seems unfathomable that doctors and the insurance company wouldn’t provide necessary medication. I’m sorry you’re going through this.

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It’s not the insurance company - it’s just the doctor.

They want him to see if he can take the shot only - which is what I want too.

But, what I don’t want is some crazy yo-yo effect of well & sick. I don’t think they understand how quickly he can get sick.

I go into the office in the morning & work from home in the afternoon. He was asleep when I got here, so hopefully he’s at least getting a mental break.

Poor guy says when he’s not awake thinking about it, he’s dreaming about it. He’s just in a bad place.

If they were pleasant delusions, I’d just go with it. But, he got a crush on a therapist he was seeing about a year ago. One of his delusions is that they had a intimate relationship. Now, he talks about how he can’t get some pretty terrible visions out of his head - that he was here, but he had no choice but to watch things that happened at other places that involves really horrific things happening to her.

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I read and keep thinking: is there a way tomake it work? What would i do.
!!!
I would Keep writing to them. I would organize my writing in a way to make them feel responsible.

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He really needs medical care…

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I know how to write for an audience.

This time, I wrote in a simple timeline that the doctor could quickly read - meaning she would actually read it.
Next time, I’ll take a different approach - or I’ll be talking to someone else.

All along, I keep thinking about what if he got to the point he hurt himself or someone else - then what.

Just last night, he said he might as well be dead as have to live with those images in his head that never go away.
Suicide has been such a common topic here that I know might as well be dead is just starting to be serious & usually goes way, but it still gives me a jolt every time it’s said - especially as his disorder seems to progress.

We did have a talk about he could go to the hospital if he felt he needed to be there to be safe and he said he’d think about. Lately, he’s been saying he doesn’t mind the hospital - that he actually likes it there. Of course, that’s whenever I’m trying to explain why he needs his shot - because it helps him sleep, and he’s went to the hospital 3 times in the past 7 months for not sleeping.

He’s only been in this program about a month, and because I’m very protective of him, I’m sure I appear to be blocking their efforts and trying to manage things - because I am. If they screw him up, I’m the one who has to pick up the pieces.

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He tried to tell the doctor last Thursday about one of his visions.

He started saying he needed some new med he’d read about that helps you forget things - because he has a memory about the other therapist, and he went into some detail.

Now, he feels like she just blew him off & did nothing.

In fact, he says that a lot. He says, I go in, I tell them things, they listen to me, take notes, then they do nothing. Even though he lacks insight right now, at times you can tell he desperately wants help.

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You write very well, but i mean literally to write in a way that would put the responsibility on THEM: his not sleeping, his suffering, his anguish.

…
Did I understand correctly, that since they wont prescribe the pills, you have no pills to give him? (I do keep in mind your personal message to me as well). If this is the case, i will write to you personally and i will tell you what i did to have the pills. Also, you are lucky, that he takes vitamins. My daughter wont even take vitamin D.

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I understand what you meant - I just haven’t done it yet. I’m hoping I don’t have to go there. I did have a talk with the program coordinator later in the afternoon and explained in detail what he was going through.

She was very calm & reassuring and explained more of their program to me. I get what they want to do, but it doesn’t help when he’s in a bad place. She told me that they have had great successes with a lot of people who you’d never have thought would get better when they walked through the door, but that some people don’t find their perfect drug.

I’m not ready to hear that because I have seen him do better, but I’m also not ready to move on to a new treatment team. Their therapists will come out to the house to talk to him here (not ready for that because I’m afraid if he gets paranoid about it he’ll walk off & leave), or they can pick him up to go do things. They can send a nurse here to do medication management if it comes to that. The nurse does do his injection in the office. They will be able to help him with job placement and help him find a place to live if he needs to move out.

The doctor is very calm and low-key with him, she listens, and she’s not pushy about you better do this or that, even though she can see he’s struggling.

I’m just very frustrated because I’m wanting to sprint - and they’re working at marathon pace. It’s especially frustrating that I felt like I got him to a good place, and it only lasted for days.

He did sleep for about 5 hours and is a little better, and he gets the shot tomorrow, so hopefully things improve.

I do have pills, leftover from the hospital prescriptions, so if I thought it was a dire emergency, I’d give him one anyway. But, I need to let them see that he needs more because I’ll run out at some point. They can increase his shot one more time, but I think what he probably needs is the 156 mg shot every 3 weeks instead of every 4. Tomorrow will be the 3 1/2 week mark, so I guess they’re slowly coming my way.

I’ve got a new plan to try to wear him out physically a little bit too. I got him to help me clean out the back shed today, and he’s been complaining about clutter and things not looking nice enough, so if he wants to complain, he can help me fix things.

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So sorry you are experiencing this, @slw. Related to your son’s noncompliance with meds, have you (or anyone?) looked into Trinza? Just curious if anyone has had success on the 3 month version of this medication.

Hoping that things level out for your son. We too had some breakthrough symptoms at 3 weeks. I am hoping to get a better grasp of where we are at during the next couple of months. His conditional release is over after the shot at the end of April…and we shall see where we will be with medication compliance after that.

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I’d be afraid for him to move to Trinza - what if he started having breakthrough symptoms at 2 months? Maybe if they could get him stable for a year, but even then, it’s nice for him to go into the office every month to stay engaged with the team. As much as I’m complaining, I want him to participate more and take advantage of everything they offer, which is a lot.

They keep telling me people have breakthrough symptoms in the last week, but I’d think a few voices or a slight increase in delusions would be considered breakthrough. Going from sleeping OK to not sleeping for 3 days is a little more than breakthrough to me.

On his second maintenance dose, he stopped sleeping for 5 days and ended up back in the hospital. They were going to give him his shot on a Monday, which was about 4 days early, and he couldn’t make it. He asked to go to the hospital at home, we went to his appt anyway, and he kept asking to go. Since they weren’t going to increase his dosage at the office appt, I took him there instead of having them give him the injection so I could get him up a dosage quicker. This was a doctor before the one he’s seeing now - he only saw her 3 or 4 times until he got into the intensive program.

When he went to the hospital, he changed his mind when he got there, so they put him on another involuntary hold, so the symptoms were pretty severe.

If they weren’t giving him his shot tomorrow instead of next Monday at 28 days, I think there’s a good chance that he’d be back in the hospital by then.

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Similar experience here in the UK. Daughter put on monthly Aripiprazole injection but sz got progressively worse towards the end of each month. After 4 months, 3 weeks in she became more delusional than we’ve ever seen her so we called in the mental health crisis team.

She’s in hospital now, they’re trying her on a 2 week shot instead of 1 month, and switched her to Clopixol. She’s also taking 15mg Aripiprazole pill daily, but they’re hoping to wean her off that as they increase the Clopixol dose.

So, do you think it would be worth asking your son’s doctor if there’s a 2 weekly injection of Invega?

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That’s a good idea, but I don’t see one available here.

I’ll ask though.

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Risperdal Consta is similar and is injected every two weeks, plus there is an initial oral time of three weeks or so…

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Thank you for that.

I read that riperdal metabolizes into paliperidone, so that is a good option.

I just took him to get his injection. He didn’t want to go - he’d been up for about 20 hours & just wanted to sleep, but I got him there, even though he asked me several times on the way to not go. Of course, I felt guilty about pressuring him.

He got the shot - it’s the 6th one he’s had counting the 2 initial shots a week apart, and he’s had no bad effects. But, this time, on the way home, he asked me if it was going to kill him - and I told him no and reminded him he’d had these shots before. Now, I’m watching him because he had what seems to be a panic attack just before we got home - he said his hands got really hot, then he said they felt numb, but he could feel me touching him on his fingertips and he couldn’t tell me if he was having a pins & needles sensation.

He’s walking around & says he feels better, but I’m watching him closely to see if we need to go to the ER. Luckily, one of the hospitals just put a satellite ER about 10 minutes away so I can drive him there faster than an ambulance could even get to the house.

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The Invega shots wore off the same way with my son. That was one of the reasons we switched to another med. None of them, thus far, have worked.
We have tried a cornucopia of different medications. He is currently on Clozapine.
His latest psychiatrist has done a DNA test on him that shows which medications his body will metabolize. Many of the medications we have tried are medications he should have never been on.
The latest medication has been a patch called Scopolamine, to be worn while still on the antipsychotic. It was prescribed to take away the drooling the Clozapine causes, but it has done so much more. He still hears the voices, but he is no longer as paranoid or anxious. He is even watching TV and cracking jokes. These are behaviors I haven’t seen in a long time.

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I guess I should remember that he does joke around and laugh most of the time now.

Clozapine might be in his future, but I don’t know how I’d get him to take it.

The Scopolamine sounds interesting - I’ll add it to my list of things to remember.

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Well, it’s Thursday afternoon - he got his shot yesterday a little after 1 PM.

He’s pacing like crazy, lots of delusions, wants to paint stuff on the outside of the house & he’s slept about 7 1/2 hours since either Saturday or Sunday night. He said he slept those nights anyway, but he was up when I went to sleep, awake when I got up & there was evidence he had been up during the night.

But, I know without a doubt that since Sunday morning, he only slept about 5 hours on Tuesday & 2 1.2 hours yesterday - that’s 7 1/2 hours in 4 1/2 days or 106 hours as of right now.

I can’t figure out how he’s still standing - and, of course, he says he’s not tired.

He was supposed to call the case manager/therapist today to say if he’d be willing to go to the movies tomorrow with him. But, he wouldn’t call. I’m tempted to tell them to come anyway & maybe talk to him here for a little bit if he’s still away.

This guy, not sure what his title is exactly, did ask me today if I thought he needed to go to the hospital to be stabilized. I’m guessing he’ll get bad enough by the end of the weekend to need to go - I’ll just wait for him to start to get scared & ask. Hopefully, that will happen again.

They sounded like they might want to try Clozaril next - He’s so insistent on he’s not sick & he’s not taking any pills that I don’t know how I’d get him to take them everyday. And, I couldn’t do anything sneaky with them because he’d need bloodwork on the regular.

Maybe the shot will kick in. Or, maybe I can get the doctor to let me give him more of the oral Invega tomorrow. I’m sure the case manager will tell her what’s going on, but I’ll be making sure tomorrow.

At least the case manager agreed he saw a big change in him from last Thursday until this one. I don’t understand with the long halflife how the Invega clears his system so fast. People online talk about taking months to get all the Invega out their system. It runs through him like water.

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I’m sorry to hear your struggle with this medication. I wish I had answers for you. It doesn’t sound like it’s very effective and if it were me I would seriously consider a different injection. I get why you want to stay on the injection. I had the same battle here. Maybe the injection for the Abilify Maintena (not sure if that’s the injection name) would work better. I’ve always felt it’s better to start out with too much medication than not enough. I worry the psychosis is causing damage. After he’s stable for a few months on a higher dose or something different, then maybe try tapering down. I wasn’t worried about giving my son too much of anything - I just wanted the psychosis to go away. Then of course, finding the lowest amount possible that still works. We didn’t even try to go down until over 6 months. I’d rather have him have the side effects than the psychosis. Also, they had my son on Invega shots and Abilify pills at the same time. Maybe having two different kinds of meds in his system would work better. I had to threaten my son he had to take his pills or… I had a list of things I was going to not do or not allow or not give him. Or it could be if you take the pill every day, after 7 days I’ll get you this or that. Once they start coming around, you can probably drop the bribes. I even handed my son his pill every day for a few months. I got remarks and eye rolls every day. He hated it. Now I just put them in a pill container (7 day) and leave them in the bathroom and now he just takes them. Although he doesn’t take the Abilify anymore but he does take other things. And he was a NO way No how EVER am I going to take pills. But now he’s compliant, for now. As far as the Clozapine, I mistakenly always thought that was an injection. Does he just refuse completely taking pills? It was awful over here for a while. I wish you luck and I’m really sorry about your struggle. Hang in there. You will get the right med and dosage!

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He took Zyprexa for 7/8 years when he had insight & could see that he needed them.
It stopped working for him - or else he just stopped taking them - a little over a year ago. Either way, they no longer work and he no longer recognizes he’s sick, other than some social anxiety.

Now, he will agree in the hospital or in the doctor’s office to take them. Sometimes, he’ll refuse as soon as he gets home. Sometimes, he’ll take them for one day, then refuse. And, sometimes he’ll act like he’s taking them the first day & hide them. Either way, within a few days, he’s refusing.

He will take Neurontin as a mood stabilizer, sometimes, but not like he’s supposed to.

I’ve tried the you’ll end up in the hospital route. He says he doesn’t care - he likes it there.
I’ve tried just letting him not take them & learn his lesson. That doesn’t work - he ends up in the hospital & stops as soon as he can when he comes out.

I agree with go high & taper later - that’s my way of doing things. I’m guessing I’ll be calling the doctor tomorrow if he’s up for another night in the morning. If she says I can supplement with pills (I have my ways of getting them in his system that make me feel awful, but you gotta do what you gotta do sometimes), I can probably pull him back from the edge in about 2 weeks.

If she says to wait, I don’t know if I can do that. I might be doing what I think is best & damning the consequences.

It’s crazy, pun intended, that he was so good just a week ago & so sick today. I could already see the shot leaving his system when they said stop the pills.

This was my timeline I gave the doctor thinking it would show a trend of improvement, then the start of a decline. She said she read it - it didn’t do any good.

Day Date Notes
Mar 1-5 had stopped sleeping for 3 days, 12 mg oral Invega/day

1 Mar 6 156 mg Invega Injection, droped to 6 mg oral invega per day

6 Mar 11 started sleeping normally

9 Mar 14 saw case manager
10-14 Mar 15-19 talking about delusions decreases until it stops for last 2 days

15 Mar 20 starts gradually talking more about delusions again

17 Mar 22 first time up for over 24 hours since March 10th

It’s so frustrating - part of my job is to identify trends & proactively address problems at my work, and I’m very good at it. It’s definitely not helping me now.