Family and Caregiver Schizophrenia Discussion Forum

I think my son may be having catatonia

He stands motionless for up to 3 hours staring at the floor. He says that he’s “in court”, which I think means that his voices are heaping accusations on him.

He doesn’t say anything, but if you stand in front of him and speak loudly over and over again he’ll utter a few words.

Lately he won’t eat unless hounded by my wife and then maybe it’s 500 calories a day. He does drink enough liquids, though.

He was recently upped to 800 mg of quetiapine because of the 24x7 voices and not sleeping. He’s finally starting to sleep better, which his psychiatrist thinks means that the high dose of quetiapine is starting to have an effect.

We have another meeting in 2 days and at the last meeting he was talking about upping the Seroquel to 1,000 mg, which is 200 mg over the maximum licensed dose.

I called his psychiatrist a few days ago and asked if this is an emergency. I think because he will eat something and does respond if spoken to, even if it takes some effort, he said he didn’t think it warranted a trip to the ER.

I think you should get a second opinion . It sounds very unhealthy . Is the catatonia a side effect from the meds ?

Is quetiapine suitable for treatment of acute schizophrenia with catatonic stupor? A case series of 39 patients

Conclusion

This study suggests that quetiapine is a promising agent for the treatment of schizophrenia with catatonic stupor during the acute phase.

A case of quetiapine-induced catatonia

Conclusion

The importance of pharmacovigilance cannot be overemphasised. Clinicians need to be aware that catatonia may occur with the use of quetiapine and patients need to be closely monitored for unexpected reactions.

Go figure!

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How interesting! My son was never on anything except Invega Sustenna and not very long on that due to non-compliance, but eventually he became med-compliant (long story and a lot of perseverence!) and we have had much success with Clozapine keeping catatonia and “negative” symptoms at bay for almost 2 years now with the exception of one episode recently that lasted only for about 4 hours. He works part time, is social, and has a meaningful life.

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That’s a good testimonial for Clozapine. His psychiatrist has suggested it many times and my son has always refused because of its bad rep regarding the blood cell problem. Has your son had any metabolic problems with it? Weight gain? Blood sugar and triglycerides okay?

Use of Clozapine is complicated by an increased risk of neutropenia (lowered white blood cell count) and so there are stringent monitoring requirements in the US. Associated neutropenia affects 1% or less of people using Clozapine and the frequent blood draws are a precaution to quickly identify any such situation. Should that happen, it tends to happen in the early days/weeks. My son has had no issues and no weight gain with Clozapine 400 mg. except it makes him drowsy so he takes 100 mg in am and 300 mg at pm. Initially it caused drooling but that diminished fairly quickly. He plays soccer and occasionally goes to a fitness club. He shops for groceries and prepares his own meals (even indulging in fast food sometimes) but for the most part he eats healthily. He is scheduled for a routine physical because he has never really had one (although complete blood workups during hospitalizations done in prior years). While for the first few years he refused medication, now (for almost 3 years) he fully acknowledges his need for the medication and can reference the fact that he has had catatonia (and acknowledges the SZ diagnosis).

I, too, was initially afraid of Clozapine. But not anymore. I have read that many professionals believe it is underused in the US. If you are considering Clozapine or someone is already on it, I highly recommend these resources: MEANINGFUL RECOVERY from Schizophrenia and Serious Mental Illness with Clozapine: Hope & Help: Laitman MD, Dr. Robert S., Opler MD PhD, Dr. Lewis A., Laitman MD, Dr. Ann Mandel, Laitman, Daniel: 9781727484243: Amazon.com: Books the doctor who wrote this book has many patients on Clozapine and most have not gained weight. And this organization: https://curesz.org/clozapine-success-stories/. There are other threads on this site about Clozapine.

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@hope4us I’m definitely getting the book. I live in Maryland and not 40 miles away there is Johns Hopkins Clozapine Clinic. My hope is to get him there. Your reply has given me motivation. Thanks.

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My daughter who is now 40 has been doing the standing and staring, but only for a few minutes at a time, for years. She is also pretty much mute - unless very angry then a few words come. She is painfully thin and at one stage ate very little. Eats well now, but
does not gain weight. I don’t consider her catatonic as she gestures and prepares food or asks her sister. She doesn’t wash or change her clothes. She was on clozapine for about a year and improved somewhat then stopped taking it.
You are the first I’ve come across with a son with similar symptoms - when Milly was hospitalized the doc wasn’t even sure it was schizophrenia - posited catatonia. She was so unhappy there in the end we got her out. Now we leave her to do her own thing - which is basically curled up in a chair in her own world. She is quite affectionate and likes to give very strange gifts!

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@Frances – Well, it looks like the horrible things that can happen never ends! This morning I’m learning about Psychotic Depression, or Major Depressive Disorder With Psychotic Features. It’s depression on steroids. This pretty much describes it: Psychotic Depression: What It Is and What You Should Know

The voices continually beat a person up about things they are supposedly guilty of, like crimes they have committed, and harp on how worthless they are.

Psychotic depression is very dangerous because of the chance of suicide.

I came across this interesting web site which shows flow charts for treating various psychiatric illnesses with drugs: https://psychopharm.mobi/algo_live/. Click on the Algorithms tab and select the illness to see what the suggested treatment is. It has a Psychotic Depression link.

Thank goodness Milly has never seemed suicidal. In the early years she used to laugh sometimes, not any more, but seems not too unhappy. We’ve given up on trying medication - she’s so obstinate and when we dragged her weeping and fighting into hospital 3 years ago the next three months were unbearable for the whole family. We won’t do that again.
Ultimately acceptance makes life easier, or at least 20 years on it has for us.

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Be careful trusting psych docs . I am
The mother of a schizophrenic 25 yo who has gone off all meds bc something he took in the past possibly seroquel did neurological damage. Research akathisia and tardive dyskenisia . I know our loved ones sometimes cannot live without any meds but polydrugging it over drugging can do harm too. Maybe low doses if another med. when my son did poorly on a med I would allow one dose increase then tell them to wean him off it. Slow taper ANY meds.
This is such a hard road. My son also lost 60 lbs .

@Sandy1234 Can you tell me what you mean by this:

You mean if they are doing polypharmacy you only allowed a low dose of the second med?

You mean if the dose increase still didn’t do any good you’d tell them to taper off the drug and try another drug instead of continuing to up the dosage of the first drug?

What about giving drugs time to work? I’ve read that it might take 2-6 weeks for drug to work.

I kept a calendar and when he was doing poorly in haldol, for instance, I told them after one dose increase that after tracking app. 60 days he was having a bad days.I.e. Crying uncontrollably, afraid , paranoid , 70% of the time. Then I made them change drugs. We never put him on more than one anti psychotic
At a time except one time when we tried to add anti depressant . We should’ve tapered more carefully now he has akathisia which is rare but a side effect.
He was under 18 when this started and tried 7 different anti psychotics. The only thing that helped was clozapine but then he developed neurologic issues and took himself off it. I don’t think it was the clozapine but will never know

Sandy, when you changed drugs and didn’t add another and did a slow taper, then there would be a period when he wasn’t taking anything, or at least anything effective, until you started the next drug.

What my son’s doc did today was to add 10 mg of olanzapine to the 800 mg of quetiapine he is taking which isn’t doing any good and which he just raised a week ago. I wanted to immediately start tapering the quetiapine and he said no. I’m going to have to be more forceful when I see him again in 4 days.

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My 40 year old son has been on Clozapine and Fluvoxine for the past 10 years. He was diagnosed with SZ at the age of 28, We tried several different second gen anti psychotics with poor result. Sleeping, Catalonia were the primary issues. The Clozapine produced a major improvement. He is naturally thin so there has been no weight gain. Drooling at night seems too be the only other negative side effect. His blood work has been in the acceptable range since he began taking Clozapine.
He is currently on 500mg of clozapine and 400 mg of fluvoxamine. Clozapine is highly underutilized in the US. It has been a go to antipsychotic in Europe and elsewhere for years. The Dr must be on the Clozapine registry however as it is a Federally regulated med. Mt son is very med compliant as well

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Thanks for the info @djc327. My son’s psychiatrist is approved to prescribe it, but my son is afraid to take it. Maybe he will eventually change his mind. I’m also not very impressed with second generation antipsychotics. They haven’t stopped the voices.

Hi
If memory serves he was always on something. The one time senior year of high school he stopped cold turkey without telling us. He suffered a suicide attempt needed up hospitalized on clozapine which worked great until neurological problems cropped up. I don’t think they were from clozapine and wish he would go back on it.
He took clozapine for 5 years no problems otherwise.
He is now only self medicating with cannabis which is feel is not a good solution.
Don’t let the doctors have the final say you know your loved best and must advocate for them.

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Hello our son is med compliant as well he is on the same as your son but we have also added Abilify injection once a month. It’s been 6 months now. The dosage is different, of course, how is your son with showering, we have been struggling with that. And I would like to up the dosage of clozapine it’s currently only 225.

@Lovemom My son is not showering. There are definitely patterns of behavior I’m seeing as I read people’s messages. I think this comes under the category of “personal hygiene”, which comes up frequently. I guess it’s to be expected. If you’re hearing voices non-stop, personal hygiene gets pushed down on list of things to do.

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There’s also an element of not having to worry as much about hygiene, dress, cooking and cleaning and other niceties due to lack of social contact. Some of you may relate to this given the past year’s experience through the pandemic.

There’s a degree of what’s the point? No one is visiting, and I don’t expect, want or need anyone to visit. I don’t/can’t/won’t leave the house, so there’s not as much of a need to worry about such things.

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