Severe Negative Symptoms

Family
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Hello I have not had time the past month to be here or respond to the many kind people who replied to my first message for this I apologise. I have though spent the last 4 weeks battling to get my son from Denmark to live me in the UK. He was so resistant to this. Finally I managed to convince him although he is maintaining he is not living with me long term. But it was an immense relief to get him discharged from the Psyc unit in Denmark and on that plane to England. I am so tired of the many flights I have had to take since Nov 18 when he was first admitted.

My post though is about Negative symptoms which my son now has in a very severe way. Withdrawn quiet irritable, cant reach him hardly at all. He has been home with me 2 days, stays mostly in his room, comes down a few times a day to have a smoke in the garden. Then goes back to his room. He wont take his hoody off even though its warm here right now. I think this is because he consious of his weigh gain which has increased again since they put him also on Mitazapin with Risperidone and Propranalol.

I dont really know how to approach the negative symptoms. I feel I am saying all the wrong things. I feel so usless unable to help him , I know he is suffering. He is 21 has now no friends left (they deserted him when he was diagnosed with the SZ ) he was so full of life until this wretched illness took hold. Studying, sociable, well dressed very clean cut. Now so different. We have his first drs appointment today in the UK and get me not wrong I am absolotuley over the moon he is finally in my home with him.

But how do others manage the NEG Symptoms of SZ ? what is the best way for me to be ? I try everything to motivate encourage , but to no avail. Im not sure his meds are touching the neg symptoms. I think of clozapine but worry on the side effects … so many questions … my life is like a car crash this past 8 months but I can only imagine how it is for my boy.

Thank you for reading … Dino

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Never get mad at him as he cant help it. Practice to simply blow off his behavior and forget it ever happens…

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Hello Dino. I’m so glad to hear you have your son with you now.

Our sons sound so similar. We too had to pull him away from his life (at college) and bring him home. It’s been 3 years, with most of that time on monthly med injections. At this point, our son’s negative symptoms impact his functioning even more than his positive symptoms. He has no life outside of our house.

From what I understand, this illness often causes frontal lobe damage and this damage impairs self-awareness. I think you just have to give it time, to see if your son’s brain can heal a bit. Hopefully your son will have a better outcome than our son has.

Try to provide the calmest and the most stress-free environment as possible. Give him his space, allowing him to reach out to you, rather than you reaching out to him. His life is completely altered, and it’s possibly going to take a few years to see exactly how this illness progresses for your son.

It’s taken us awhile to fully understand that our son’s brain works very differently now, and his thought processes are messed up. We just have to let things go in one ear and out the other.

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I’m in agreement with other answers here - as sad as it is to see these changes, calm acceptance, and gentle support seems to be the best approach. None of the behaviors sound dangerous or threatening, just sad - something I don’t wish on anyone, but not something I think needs to be challenged.

You may see improvement over time. Try making positive, low-key comments when something is done that is improvement. Make small offers or openings for engagement with you - such as a trip for coffee, or a look at a funny video and give him time to consider to accept, and don’t be upset if he doesn’t.

Keep expressing your love for your son, and give him time.

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Be patient and stay hopeful. Let us know how the doctor appointment goes. Laws and available helps surrounding mental illness differ from one country to another. In the U.S. We have the National Alliance on Mental Illness (NAMI.org) , but you could always look at into and suggested resources on that website. Listen when he is able to communicate anything at all (as long as there is no self-harm or harm to others) and do not be judgmental. Getting on and staying on the right med(s) in conjunction with talk therapy is usually ideal. But keep in mind that half of persons with SZ are not able to see themselves as they really are and this could be a factor. Keep us posted as best you can.

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Hi Daybyday thank you for your message how old is your own son if you dont mind me asking ?

I hear what your saying on providing a calm place and giving him space but he is so withdrawn. I feel for you and your own situation with your own son

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Hi Vallpen it takes time for sure and I agree on expressing love for those with this illness even when they are none responsive. I really hope to see improvment over time but to be honest at times I loose that hope :frowning:

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Thank you Hope4us I am checking the website you shared. His meds I dont feel are right or working as they should - seems like a daily battle right now. Thank you though for taking the time to response. And yep he cant see it himself as he is really is - heartbreaking for me and for many others who face this im sure!

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So we had the Drs appointment. We was resistant to the idea of the Access team referral which can only come from his GP in the UK. He said im not here in the UK for long enough. I just remained the calm. In the end the Dr handled it really well and told him as he is staying more than 2 weeks she has to refer him. And that in doing so they can really go deep into what meds he is on and if they can be changes.

She does not want to mess with his meds yet until his assessment as he is on a complex mix .

He stays in his bedroom most of the time, I cook for him do his laundry, all the things a parent does. Today we went for a walk and for the first time ever said lets go have a beer. It was really difficult as he is 21 and I really understand how hard it is for him to have to be denied so much in his life which he already is. In the end I cheated as he was very down and had no interest in the cola I bought him. I bought a zero alcohol beer - yes I know people will slam me for it. But I didnt know how to handle it.

I double checked with the person in the bar, it was 0.00 he had 2 of them and thankfully did not notice ! Thing is he has never been a big drinker even before he got ill. just the usual teenage stuff . But he seemed for 5 minutes at peace sat in the Sun drinking the cold zero free.

But its really getting to me right now he has no friends left they all deserted him over time as he got sicker. His eating loads again and is packing on the weight - such a difference from just a year ago when he was still so slim and fit. The mitazapine the Dr said can cause this.

He has litle interest in things other than watching movies right now on his Laptop. I am trying to be there for him every step of the way but sometimes I need to work, thankfully can do this from home.

I keep my own pain at seeing him suffer away from him. I could scream sometimes though this wretched wretched illness and he shows no signs of ever gaining back something which has been lost. Negative symptoms to me seem almost worse than positive but I know thats stupid.

Sorry for the rant but days like today are difficult. Suns out and he is in his room and wont come out.

Im glad we have the Access team soon to give him a full assessment and im thinking we need to look at something different on his meds.

ahhh sorry for the rant but I just needed to get that out. I hope everyone else is coping … thanks for reading Dino

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I am really glad your son is with you now, much better for you logistically. I know well the behaviors you speak of -they were the behaviors of my son at the age of 21.

I know this is not the news you would hope to hear but it takes time, lots of time for those behaviors to evolve into something better for your son and in turn for your relationship with him.

As for clozapine, my opinion of it where my son was concerned is that it was his salvation and completely worth the side effects which today are very minimal as they do subside.

I know not everyone can say that but I would definitely recommend at least trying it because otherwise you will never know if that is the way to a better wellness for your son.

Keep in mind the good results are not usually immediate with clozapine but more gradual over time. I saw a definite improvement but very slowly and consistently.

It is also important for smokers who take clozapine to stay as level as possible on their smoking and caffeine consumption as sudden drastic increases or decreases can effect the clozapine levels in the bloodstream-like my son just has maybe 1 or 2 cups of coffee a day and maybe 10 or 12 cigarettes in a day everyday and he takes 125 mg clozapine morning and night. Down from what use to be 150 mg 2X a day.

While he is in his "anti social " space (as I call it) just try to let him have that space but every so often just let him know your there and that you care, just keep reminding him of it and maybe ask if he wants to walk with you or go for a drive with you or eat with you in a different room. He might say no 100 times but once he might say yes and that’s the good beginning of something better right there.

From my experience he has to find his “safe place” and just being physically safe at home is not enough. He needs a substantial time of having no expectations of him (short of health and safety) and time to sleep a lot -and time for lots of quiet and time to mentally feel safe and secure.

I say this from personal experience. It is a slow evolution and rushing it does no good at all. It is important that you try to stay as upbeat as possible when you are near him or within earshot. Being his main caretaker and someone he loves- he will pick up on your sadness or stress or anger and it will affect him. I can’t say everyone is like my son but I can say that I believe wholeheartedly in this slow process that allows the newly medicated to find their new normal on their own.

Meantime if it is possible for you to seek counseling for yourself so that you also have a sounding board and can keep the right frame of mind for all of this I highly encourage you to do so.

My son is doing quite well today. He is 35 and still lives with me. He still needs my direction and guidance and still doesn’t socialize willingly or have any real self direction or motivation but he can converse and laugh and joke and cook with me. We go places together and often have a lot of fun. He has hobbies and favorite shows and music and if you ask him he will tell you he is happy.

Still he is unable to hold a job due to the stress and he won’t seek further education because of the stress. He has no desire to date or make new friends. His life is what it is and I stopped long ago playing the comparison game and lamenting that my son won’t reach typical social expectations. I focus on the fact that he is now sane, he is drug free other than his psych meds he takes and he is healthy and happy and a joy to be with. I could not say that when he was 21.

I wish you and your son a healing path whatever that path may look like.

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@Simdad, my son just turned 23. He started his prodrome phase, showing the beginnings of change, when he was about 17. All hell broke loose when he was 19. He was diagnosed at 20, and became med-compliant, on injections, at 21.

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Same timeline for us. He began acting strangely around 15, not coming out of his room to eat with us, “we were all
against him”, and then @ 17, it got even worse. By 19, all hell broke loose, diagnosed @ 20 (cops found him on the streets, wandering for 2 days, and took him to hospital, where they admitted him for 3 months). Med compliant since diagnosis.

I just don’t understand the target for young boys between 15-25. I belong to other sz support groups, and this age category seems to be it. I just don’t understand.

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Surreal because this is almost exactly my son, withdrawing from 16 to 17 the prodrome phase had begun although I did not know what it was. Then boom the first episode but it was short lived 3 days inside no meds this was late 19 yo. Then the following year like your self 20 all hell gives! Major psychotic episode. My life changes for ever and I of course so did my sons in a way I can but only imagine. Its good your son is taking the injections, my so far has refused them but does now take oral without being forced.

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Hi simdad my heart goes out to you. Your son sounds just like mine. My son is also staying with us after he was released from a three month hospital stay. He’s getting invega injections once a month becouse he on a comunity court order. He has gained about pounds a d is staying in his room only coming out to smoke and eat. Saying he can’t do anything because of the invega he also drinks coke all day long. I wish I could give some good advice. This just so hard to see.

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Hi oh my its a mirror image of my son bar the invega my son takes risperidone oral. He also stays in his room, comes out to smoke outside and drinks loads of coke / dr pepper. Have tried to get him onto bottled water - but no go. I wish I could give you advse but am just learning my way through it myself. But I have started to ask more of him. Like clear dishes from his room, wash his teeth (which he stopped doing) he did some of that today. Hard going though … I really wish you well Margi and of course to your dear son my heart goes to the both of you also x

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Hi Catherine wow what a response !!! reading through it now … your so right though finding the safe place. I am so glad to hear your son has found his own “space” and way of doing things. He is so lucky and blessed to have you in his life. Much what you wrote need to take it all in x

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Would your son be willing to try supplements? I thought I noticed improvement in my son’s negative symptoms last fall when he was taking Sarcosine. He had been taking Risperdal also, for a few weeks, but when a doctor took him off of it, he stopped taking all of the supplements also (I don’t remember what all else, but I felt it was the Sarcosine that I noticed the most improvement). He has been unmedicated for the most part since then. He is a little unusual in that he hears voices, and is slightly paranoid, but not really delusional. That is, he knows that the voices are hallucinations.

I really relate to your story, because my son (also 21) started withdrawing from the world a little over a year ago, in the spring semester of his junior year (this is when the voices started). Like yours, he was very far away (though in the same country as me). Long story short, he came home for the fall semester (the university would not have him back without a psych eval). He did well enough to convince the university to have him back in the spring, left home to go back there - and then did not enroll. For a few months, he isolated himself once again, and I know he was getting high pretty often during that time as well, which I think makes him feel better in some ways, but also makes him paranoid and isolated.

He had an incident in March that got him sent back to the hospital for a few days - they put him on Zyprexa, but he never took it after he got out. Nevertheless, he started doing better, leaving the house again, shopping for groceries, etc. Apparently he stopped buying pot. Finally the lease on that house was up, and he came home. I can so relate to your relief at having him at home again. After a few weeks, he went (as he had previously planned) to stay with his dad in a neighboring state. I wasn’t sure how this was going to go, and it’s only been a few weeks, but I have to say it’s gone better than I could have imagined. It’s been great for me, because he’s not right underfoot, but my ex tells me how he’s doing, and so far so good. He’s taken a few classes at the local technical school, and is talking about finishing his degree in time. I think part of his doing better down there is that being at the home he grew up in gives him a lot of painful reminders of what he’s lost.

As you can see from my on-line name, I spent most of last year “SO worried”. I can honestly say it was the hardest year of my life, worse than the year my father died, or the year I lost 2 pregnancies. But I feel better now. There seems to be a cyclical nature to this illness. I know my son may get worse again, may isolate again, may get discouraged. His social skills are still not great. But then I also know he is trying very hard to pull himself out of it. I have hope that he will be able to.

If he can’t, then he can’t. I’ve accepted that his life is going to be different from what I originally expected, but right now he seems mostly happy, and that’s all I need at the moment. I know it kills you that your son seems so unhappy right now - I have been there, believe me. But things can get better. I’ve also learned that although I would do anything in the world to help him, I also have to allow myself to have a life, and that I won’t be able to do anything for him if I am paralyzed with anxiety and depression. I’ve realized that it’s not a betrayal of him to at least occasionally be happy, even when he’s not (I realize that’s a lot easier said than done).

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Things to try based on conversations I have had with other people or things I have read:

  • Rewards for desired behavior (take out the trash, get money for cigs)
  • Establish “rules” for living in your home. Get him to join you in the process to come up with some reasonable ones. (See LEAP) After all, it IS your home and what would one reasonably expect from another adult living in their home?
  • Use LEAP communication strategy (Explained in the book “I am Not Sick; I Don’t Need Help”)
  • Don’t sweat the small stuff
  • Some people respond well to having a purpose…something to do, or something they enjoy doing, even volunteer work. (What are/were his hobbies? Think: Sports/Pets/Music, etc.)
  • Talk to doctor about lethargy, especially if your loved one is already med-compliant! While none of us desires a med cocktail for our loved one, that may be better than the current situation. Even if your loved one does not give permission for release of medical information, you CAN give info TO the doctor! Try emailing your observations and concerns TO the doctor.
  • Being in the outside air is often helpful to one’s mood and level of enthusiasm.
  • Perhaps your loved one would be willing to see a counselor or attend a peer support group (See NAMI.org)…not necessarily because he “is sick” or “needs help” but just to share his own concerns and for someone to listen to him. He can complain to a counselor about anything that bothers him! A counselor, however, could help your loved one work toward an improved life style.
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I concur with these comments made by @Catherine ! Each person is different but Clozapine seems to be a game changer for many. I know of many persons with SZ who are stable on Clozapine and many of those are holding down a job. Read the threads on this site about Clozapine.

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My Son died in “care” . I have thought hard about what extra I could have done to avert this.
!) Diet - Low carb diet has lots of meat and very low carn

Vitamins) Having attended lectures by leading experts who tell me that Vitamins are essential.

All this takes a year or so to kick in they tell me so its not an easy fix. But with a good response rate

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