Family and Caregiver Schizophrenia Discussion Forum

Bad day ... warning signs and clozapine

Hello everyone I posted here a while back but have been able to contribute exactly Zero to this forum in a long time. So feel like its rude of me to be asking some questions but really not sure what to do. My son diagnosed with SZ last November. Finally got him living with me June this year.

Severe neg symptoms. Tried loads of meds all failed. Aside from stopping most of the horrific delusions he was having. 8 weeks ago his team started him on Clozapine, he is now at 350mg a day, along with mitazapine, propranalol when needed .

But the past 2 weeks I have seen him start to slide back- I can see the warning signs. He was starting to do well on the Cloz coming out of himself a bit, then he started smoking again which affects the clozapine.

Fast forward the past few days, he is restless, leg tremors again, laughing to himself when nothing to laugh at and very very restless pacing around but not saying hardly a word to me. He has also vomitted a few times , today. He has vomitted in the past over the past 8 weeks or so at different times. His team think it could be because of the crap he eats.

I struggle to get him on any sensible diet. But today has drained me … i hae been on edge with him all day. Can see those horrible warning signs in him. He has just vomited up all his dinner Second time today.
Spoken to his team they going to check him this week. He has also been constipated and I know the dangers of that with cloz, so he has been on fiber packs senna and some other stuff to help him go. But he always tells he dont go. So dont know what is fact and what is fiction.

Does anyone else notice nausia or vomitting ? restlessness and so on ?

sorry if its a disjointed post but I could honest scream right now. Its heartbreaking to see him like this. My son 21 living this life where he only comes out of his room to smoke or eat. This illness is destroying him.

thanks for reading … Dino

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I do remember you and your difficult struggle with your son. Sounds like you have been working hard to help him and you sound very exhausted. Clozapine is unlike any other drug and the side effects or negative effects you are seeing depends on how long he has been on it and how much he is taking.

Several other things also play a role. I can speak on this based on my own son’s experiences with it over the past 10+ years. I promise you it started off pretty rough at first but with encouragement from my son’s doctor to give it time it finally got much better but it took time and making some very specific changes for my son on his behalf.

First my son always smoked too much from day one and originally he also smoked weed and did other drugs and drank tons of coffee and pop. The doctor said no drugs with medication and so the one thing that helped me control that was me not letting him have any pocket money of his own at all ( I got guardianship of him very early on and was made his rep payee for his disability payments)

He finally quit all of his drug seeking behaviors which occurred about 1 year into the clozapine treatment when he stated that he could not hear anymore voices. That was when the self- talking/mumbling and laughing out loud at nothing stopped too. He started really seeming like he was much more able to be “reached” then.

As for coffee and pop I controlled that too and had him limited to one mug a day and one pop a day, it was hard at first but now it’s a habit. With no money of his own I controlled cigarettes too, and at first (as hard as it was for me being a non smoker) I issued him one pack a day, much better than the 3+ packs he was somehow managing to get or “bum from others” before I stepped in.

Today he smokes about a half a pack a day so things have improved very slowly and gradually. I cooked all of the food so he he ate what I made and I cooked healthy with very little junk or sweets. Smoking has to stay stable when on clozapine as you well know. Changes have to be very gradual.

The next thing I had to work on was a predictable simple daily schedule. Any kind of predictable daily schedule. I kind of let him take the lead on this to an extent because “demands and expectations =intense stress” in the beginning.

Even if the so called schedule was wake up (very late) , smoke a cigarette, watch a TV show, eat something, smoke a cigarette, go for a ride with mom (or not), come home and eat lunch, take a nap, etc etc…I mean what I am trying to say is while my son was adjusting to the clozapine his daily “activities” had to be extremely ridiculously simple and easy and extremely low stress and quiet, allowing for lots of time to sleep, stare at the TV or the wall, or listen to music or sleep or just sit. I know this is hard on the caregiver it really gives a whole new meaning to “caregiver” BUT having been through it for the first 2 or 3 years on the drug I saw a very slow and gradual improvement and positive changes started to happen in my son, this drug is slowwww but effective. He did have muscle rigidity and twitching at first and drooling problems at night but the doctor gave him 2 mg of benztropine which does help with that. He also was very tired --slept up to 16 + hours at times, gained almost 100 pounds all total BUT again, it’s been 10 years now and he sleeps 10 hours a night now and wakes up without an alarm and he has lost over 60 of the 100 pounds and he exercises 5 out of 7 days a week. Today he has no real muscle issues anymore. He still has the lesser symptoms of wanting to not seek out friends or any other companionship other than me and he likes being alone the best, but he is genuinely happy and he has hobbies and he laughs and jokes and we recently discussed who we wanted to vote for in the upcoming election and we discuss the news and he thinks about things other than himself, he is connected to the world —where he was not connected to anything but his sick and addled mind in the very early days. He was diagnosed when he was 21 and now he is 35. He is doing very well.

Its’s important to know that as a caregiver the one constant that I have maintained is shielding him from prolonged undue stress. I feel that is where his success has really been rooted, a low stress environment. I had to learn that what I saw as low stress might be very stressful for my son, like having a stranger visit for example. If a friend came to see me, he would stay in his room with the door closed and I let him and I didn’t have company often just when I really wanted or needed it. Expecting him to do chores, I did all the chores for a very long time until he was stable for quite awhile and then he just started saying, “I can do that” and I let him, now he does more than his share of all the household chores and he is good at it too. He helps with shopping and cooking and he learns new skills every year pertaining to paying bills and managing money. Eventually I gave him a PayPal (prepaid card) with a certain amount on it every month and often it’s still there at the end of the month, occasionally he craves Taco Bell or some other fast food and he will spend it. We are very peaceful and happy room mates at this point. He is doing better now when stress arises, like recently we had to move unexpectedly and in the past that would have thrown him for a loop but this time he managed well and I noticed he slept a little more but he bounced back and he was even supportive to me during the move. I still believe small positive changes are happening all these years later.

His blood tests have come back very good all along so I am fortunate there but I agree with your son’s medical team that your son has to have a “big picture” kind of treatment that includes moderation in everything, remembering that while sick your son will not be able to properly judge what is moderate. You have to create his reality in a sense and be able to constantly tweak it when you see something not working for him. Food, cigarettes, coffee, sweets, activities, you have to decide and help him accept limitations until he has experienced true stability for a good long while THEN you will see him want to take back his own care. I believe this. The one thing I had that a lot of caregivers do not have is I could stay home 24/7 with my son because I was diagnosed with some major health issues that kept me from being able to work. Had I not been home with him I do not think I would have had the same success that I had. I also was always a single mom so I never had to debate anything with a significant other which could have helped me or delayed things considerably, I will never know. I think having me around day by day was somehow a comfort for him even if he didn’t like it was or couldn’t express it. Sometimes he would ask me something that was clearly based on a delusion and if I said that’s not how I see it, he would be like “oh okay” like he was checking his own reality against mine. This was after he was really showing signs of stability. It took time for him to trust his own thoughts as well as to realize he could trust me 100%.

I share this because I strongly believe in the positive results of clozapine. It saved my son’s life, and in a way mine. I understand everybody is different and sometimes the blood tests don’t work out or the patient doesn’t comply or the caregiver can’t gain the control needed to help the patient get where they need to go BUT you sound like you are trying your very best and that counts for a lot.

I would highly recommend that if you can you find a therapist for yourself even if you can only see them once a month, or come here more often, if you can, for support, if you can’t leave your son right now. You need to keep taking good care of yourself so you can stay strong and healthy for your son and for yourself.

One day he will thank you for being there in his darkest time. I believe that, Recently my son thanked me and even apologized for all the trouble he put me through, I just told him no apologies were needed. I consider him my labor of love. Thanks for being patient as I ramble on with my stories and opinions I hope somewhere my words help. I wish you and your dear son all the best. PS: One thing I wanted to add was that I take my son to his family doctor every 6 months so he can have his liver enzymes checked which is important and often a psychiatrist will order that as well. I also found out his vitamin D level was almost non existent so he now takes a prescription dose of vitamin D3 (50,000 units capsule) once each week. I also get his A1c tested (just to be safe) and make sure his blood pressure is good, I also make sure he gets his teeth cleaned every 6 months especially since in the beginning he never took care of them and lost 3 teeth. I want him to keep the rest and today he does well to care for them. Just wanted to add that -message me anytime, I never mind being a source of support for another parent, if and when that’s possible. Take care!

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Been seriously researching this. Seems like a glimmer of hope. Did Ashley go voluntarily?

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Yes, as she said in vid trying for years to get it done, you can only get it done if proven no med will work…

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We’re at that point now. Has been classified “med-resistant”, and ECT has been recommended. Just got to figure out how to convince.

How often does Ashley get treatments now, for maintenance?

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9 rounds in 2017, no more has been needed so far. 3 weeks in hospital, one session every Monday Wednesday and Friday… it is a function of how hard they hit them to get results… it is physically painful after it is done… every muscle is flexed hard… I think they step up the current with every session …

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show him our vid…

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Thank you for sharing this its fascinating and hopeful. At this time though I must continue on this path with the clozapine unless he is instructed to come of those meds. This though must give hope to some!

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Catherine I do not patronize when I say you are one incredible mum for your wonderful son. What a journey you have both had. I remember reading some of your other posts. I really am grateful for you sharing some of your story with me.

I am going to reply more tomorrow but its 5am now and me and Simon just got back from the A & E (ER IN USA ) as had to call 999 because he was vomitting and his temp shot through the roof. His crises team advised I get him to A & E … they were worried at one point tonight it could be sepsis … it was not. But he has had bloods taken (took forever as he has weird veins) so we get results from his GP 8 hours from now. To check if he is getting rid of the Cloz from his system as he has been constipated. Felt so sorry for him being pulled this way and that. I know you and many others here will know that feeling well.

He sleeps now like a baby. I know in these moments just how dependant he is on me. Like you Catherine Im single parent. So its me and him. Like you Catherine im home 24/7 (as I work from home) so many similarities in fact !

Vit D he takes daily and good point the liver check. This has been mentioned and was problematic a few months back to a small degree. But will mention to his team again.

You just explained something to me though about the sleep and why this is needed in the early days. That is Simon he can sleep for England. And yes he can not manage any stress. He is good most of the times. Comes down goes to the garden to smoke. He knows its a smoke free house. But he has increased the smoking so they are going to need to adjust his Cloz up. But need to be sure he is stable on it.

Like your son in his early days Simon is eating allot and weight has been gained. I need to be more pro active in the kitchen.

I was worried like hello tonight in the ambulance … and i hope the bloods come back stable later today. But thankful me and him are home and he is safe in his bed.

Cant thank you enough for taking the time to share what you did Catherine. You and your son are lucky to have one another! Now I need some sleep … this has been one long wretched day :wink:

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Was that med resistant to all drugs ? I hope you can get the ECT sorted … if it can help. Med resistance is my own fear for my son. Clozapine seems like Custers Last Stand when it comes anti psychotic meds.

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It is very good that you have come back to the forum and have posted this thread. Just coming here and reading and liking other people’s posts when they help you is a good contribution. I hope you find more ways to help your son.

This forum and the people on it were vitally important in helping get my daughter’s sz under control almost a year ago now. I was lost before I found sz.com, slowly learned a lot, and was saved from extreme hopelessness because the information I found here helped me to take the right actions as situations presented themselves. Be happy you are here, we are all happy that you are. You must fight the good war to help your son. I was thinking yesterday of the people (not on this forum) who advised me to give up on my daughter and make her homeless to “save myself” from her psychosis (and 40 police visits to my home). I broke down and cried in my garden Sunday thinking about this, as without friends on this forum, I may have given up on her.

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Hi Sim. Clozapine is considered Custer’s last stand here as well, but our son refused it due to his ongoing delusions about all pills.

All the rest of the dopamine blockers, like Invega Sustenna, are in a different category. They just don’t work for our son, even at the highest dosage. He’s been living in 24/7 fear for 3 years now.

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Im so sorry to hear this for your son really am. And understand something about the ongoing delusions about meds. I had that with my Son but at the outset got a legal ruling to force medicate which i Know i know is so so controversial but I did it anyway. And kept pushing his meds by force to him. Until finally he was and still is compliant. But each story I know is so different. My heart goes out to you and your son x @Day-by-Day

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I hear you @oldladyblue and so pleased you have found support here. You never gave up your daughter and how could we give up on our children in a time when they need us most. Thing is you did NOT give up on your daughter … this is what matters. I am happy to here and be around others that understand this wretched illness.

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Forced medication isn’t controversial in our house. We did the same thing, to rescue our son.

If Clozaril came in an injectable form, I’m sure my son would be on it. He’s been compliant with his monthly injections for over two years now.

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Hi Simdad. So much of your post resonates with me. My daughter, now 18 yo, takes 400 mg of Clozapine daily. When she gets her blood work (monthly) she has them do it in her hand. It freaks me out but she has wacky veins. We´ve been doing it so long at the same lab that they have a whole routine for her. As for the constipation - this has been a huge issue. Her symptoms were nausea and vomiting, especially in the morning or after eating a large meal. After her first upper endoscopy, the doctor said she had old, sticky bile coating her stomach. We had started with a gastroenterologist who consulted with a specialist and sent us to the city for every conceivable test. In the end the doctors determined there was nothing physically wrong with her digestive tract; after doing some research we determined it was a side-effect of the Clozapine - the ¨last resort¨ drug for sz. It´s been about 3 years now and she´s doing much better. She takes 2 Ducolax and 2-500 mg Phillips magnesium tablets at night, and a Pantoprozal in the morning. We tried other prescription meds like Linzess and Urusol, but they made her nauseous. If she doesn´t go for a few days I make her take an extra Dulcolax, or even two. If she vomits now, we know it means she´s constipated. She tries really hard to stay regular because otherwise she knows I´ll make her do a cleanse - 14 capfuls of Miralax in 32 oz of Gatorade, as per doctor´s orders.

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My son came off of the Clozapine after two years and is now on Geodon. When he came home from the hospital, they had him on Docusate to prevent the constipation from the Clozapine. We stopped that and went with plenty of juices and Gatorade. He never had a problem with constipation but during the Clozapine, he began laughing like a hyena and still continues for hours. Nothing, absolutely nothing stops it. `don’t know about others but my son can be violent in a moments’ notice so trying to withhold his cigarettes can be disastrous. On Clozapine, he was a recluse. Spoke to no one and barely me. Now that he’s on Geodon, he is getting out, walking to the store, and actually carrying on conversations with family members - on occasion. I don’t know how many of our loved ones developed SZ after a head injury, but my son did. It would be interesting to hear who else has see their family member morph into someone they didn’t know after a head injury. I am familiar with a pastor and a distant cousin who both developed SZ after serious head injuries - as was my son’s. He is still removed from reality and demanding at times. I’m his provider, caregiver, driver…whatever, I’m It. I’ve had him jump out of my truck in the middle of traffic if he think I’m going the wrong way - on purpose. Like, Oh yeah, with all this other crud caregivers get to deal with, I’m going to try to make things even worse?? Not! I am on a board at one of the state’s mental hospital parent support groups and we’ve gone to the state House and Senate reps to fight privatization. The doctors at the hospital jokingly refer to me as “their worst nightmare” because they know I will research, contact the FDA, the hotline for the Clozapine REMS program and the NIMH (NIH) in Maryland to search out best practices. I go equipped with questions and suggestions. At least we’re trying to help our loved ones. Just imagine those who are on the streets with no one’s guidance. My heart goes out to them. Take care all!

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When it gets bad we use:

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Hi @boobear surreal how your own situation with your daughter resembles my own sons. He has had numerous blood tests and other stuff because of the vomiting. We even ended up in A%E the other week because of this, The worry being he was backing up the clozapine in his system.

But your right there is a link with vomiting and constipation. He vomited yesterday but also complained of not going to the loo. He is on senna and a thick fibre drink which usually in the end does the trick although it can take a day or 2 to work. Today all calm on that front. And no vomiting so far.

He had his weekly blood tests, they came back as green, and his ECG was normal after it being abnormal the past 2 weeks. Thank you for sharing what you did in your post. It makes so much sense. !

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