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Walking on egg shells


#41

This is all new for you and very hard to understand, the new norm. Read up on it, it will help. It is going to take time for your son to find the right meds that will work for him. My son, who is Schizophrenic since 2012, relapsed many times, because he did not like the side affects of the meds. He is one person on the meds, thoughtful, no energy, weight gain, cannot be around a crowd at times, but that is the norm for him. Off his meds, isolates, can be aggressive, at one episode his room looked like a tornado hit it. So you have to make sure he takes his meds, most important. Eventually you will be able to accept him as he is, and help him, accept himself.
See if you can get him on disability and food stamps. The meds makes them gain alot of weight, and at times over eat. My son doesn’t cook, so goes out for fast food everyday. He has a studio apartment in our house, so see him everyday, and he is able to enjoy his niece’s and makes him smile.
One day at a time.


#42

Some great feedback on this thread. Thanks everyone who offered their insight.

I haven’t posted in awhile because we’ve been anxiously waiting for my son to meet with EASA (Early Assessment & Support Alliance) to see if they will accept him into the program. These are specialists in teen/young adult first psychosis situations. They stress relapse prevention/management and life goals.

We met yesterday and today I got the call I’ve been waiting for for several weeks. They will take him!

So through this program (http://www.easacommunity.org/) he will get an in depth assessment/diagnosis, one-on-one therapy, support to start up his life again, etc. I feel absolutely blessed that a program like this is available and that he both qualifies and is interested in continued therapy. The age restriction is 25 and he is 24, so a close one there. He would have been disqualified if the psychosis was completely drug induced or had happened over one year ago.

I do believe he will continue to improve and at least to some degree, steer his life toward perhaps a job and independence again. If he relapses during his two year time with EASA, they help him/family through it. There is also both family and peer-to-peer support.

Things have been slowly getting better and the bad days are not as often. Though yesterday my son and I got into a bit of a tiff. He blew up at me because I said an internship at a computer store would possibly help him obtain a job he liked. He stomped upstairs and then I about fell over when he came back downstairs, APOLOGIZED to me, said he loved me and asked for a hug. I was just blown away. He has a long, long way to go but this moment of insight was real progress.

I am feeling sincerely hopeful for the first time in a month.


#43

That’s great news:) Thank you for posting


#44

Sooo happy for you, Joo Joo. May you have many more happy, hopeful experiences like these. :slight_smile:


#45

Well sometimes it is risky to say anything positive because something always seems to happen to prove that wrong shorty after it is said.

My son isn’t really doing his new program quite yet, as we are in that lull between his outpatient therapy ending and his new program beginning. He has been becoming increasingly delusional the past few days and is starting to obsess on the same stuff that began his paranoid delusions the first time, which led up to his break. He doesn’t know that I’ve seen what/who he is chatting about and with online and it’s all REALLY out there weird stuff. My son’s writings are thought disordered again.

On top of the thought disorder he claims to have met someone from Canada who will give him bitcoin so he can buy himself a new computer… blah blah blah. I’ve seen their chats online and the guy from Canada’s words make sense. but alas, my son’s don’t. So I’m like, why is this guy even talking to my son? What is this about? Apparently he wants my son to do come coding work but I don’t know, it is sketchy and bizarre and I don’t think my son needs to be getting involved in this while he is trying to recover from a psychotic break one month ago!.

Oh it’s so hard to deal with this without it ending in a fight. I haven’t had the family to family training yet because the class hasn’t started so I’m just trying to keep some peace and sanity in the house until he can start his new early assessment program.

Any advice?


#46

Are you sure he’s taking his meds?

If he’s compliant, he might need an increase or something else.
Or, it could be that this med won’t work for him long-term.

We’ve spent the past year trying meds - watching them work, then not work, increase them some more only to start the same cycle over again.

The hospital is not supposed to discharge you without follow-up care.
If he saw any psychiatrist outpatient, I would call them & see what they recommend.


#47

He is definitely taking his meds but I have wondered the same thing, will they continue working or does the dose need to change? He’s been up all night several times lately and that is not a good sign either.

He was discharged with information but he didn’t know any of it. I had to coax him to get online and look up his HMO account to see if he had new appointments. He does have an appt with a pdoc and a therapist but then this also overlaps with his getting med scrips through EASA so I’m a bit confused during this transition.

My son pretty much expects me to handle/know about everything even though I don’t have his PW to the HMO account.

We had a talk and I stressed that his recovery is THE most important thing and that there is no rush for him to get back out in the world. I keep reminding him that a psychotic break is a really big deal and he needs time to heal from it. I told him he has food and shelter and support. Just go slow. He seemed to have some sense that this was prudent.

He is also volunteering at a local computer recycling non-profit. He puts in so many hours and they give him a refurbished computer. It’s just a few hours every few days… perfect for him right now. I am encouraging him to just stick with that plan. Easy does it.

We managed to get through yesterday without a blow-up so since I’m taking this all one day at a time - that was success. Today is a new day.

Love the advice/support this thread offers. My heart goes out to everyone here.


#48

SLW - About the meds…

It sounds like your son has been through it all and that things change constantly. That must be really frustrating for both you AND him.

We have been so happy with the xyprexa but I guess the honeymoon might be over? I just don’t know. His initial meeting with the prescriber at the new program, EASA, will be for 90 minutes so they really get into it as I understand. On top of that they will do a comprehensive assessment and strive to be very accurate with diagnosis and treatment. I expect they will dial in his exact medication needs in time.

But as we all know, almost all of the progress that can be made depends on a COMPLIANT patient and I just hope my son remains that way. So far, so good.

One day at a time. Breathe.


#49

How much Zyprexa is he taking?
My son had to have doses increased several times when he was ill & he would work with his doctor to taper down a little as he felt better. He went up & down like that for 6 or 7 years before it gave out. It really is a good medicine, but you have to learn how to work with it.

Also, does he smoke? Males who smoke usually need 25 to 50% more Zyprexa than if they don’t smoke - even if it means they go above the 20-25 mg max allowable dosage. I think the max is 25 mg, but it could be 20 - it’s hard to remember all of them.

The information about smoking & Zyprexa is pretty easy to find online.

It’s just that if he did well in the hospital, and now symptoms are ticking back up, it’s time to think about what’s different.

Also, he has to sleep - and Zyprexa makes people sleep - that’s a good sign he needs more, whether he is developing a tolerance or something like smoking is making it clear his system faster. They’ll probably want to take the dosage up before they try something else since he did respond well in the hospital.

Caffeine can be a problem too - I’m not sure what else.


#50

I know I read somewhere on this forum about Zyprexa being impacted by smoking, but I don’t know which thread it was. Is it the smoke or the nicotine or the tar that causes the impact?

My son’s Zyprexa gave out in controlling delusions, even with dosage increases over the last couple months, but he also started chewing tobacco just before things started to fall apart. I’m wondering if the tobacco made things fall apart?

Now it’s all a wash. Insight is gone. On deck for next hospitalization. Tic toc.

Also, Zyprexa comes in 30 mg as well.


#51

Oh JooJoo, this is exactly how I feel. I have tears in my eyes all the time. I am in such pain I don’t know how to live. I’ve lost my parents, my son’s father vanished when he was 13, I don’t have any family. He is all I can think about.


#52

My heart goes out to you Liz. It is such an adjustment - this new reality. I don’t cry as much as I did the first few weeks, but tears still come frequently, and yes, sometimes while I’m talking to my son. I am hopeful at times, completely without hope at other times. It’s just - damn tough. We all deserve a medal just for getting through it.


#53

My son, N., is on only 10mg per day. He will be meeting in depth w/ a new prescriber next Friday so hopefully, he’ll be honest with her and the meds can be adjusted. He won’t share anything with me, like if he’s dealing with a bunch of internal stimuli all the time, which it seems like he is. He has almost no motivation, seems depressed, just comes downstairs to eat then goes back to his room to mostly just sleep. On the few days per week that he has something to do outside the home, he seems slightly more motivated but I notice a big let down in his mood the past few days. The lull between his last day of outpatient therapy and starting the new program has been an adjustment. I wish they’d have just kept him in outpatient one week longer.

It is just so sad to see my son like this. My heart breaks for him every day. I think one of the saddest things is that he just doesn’t know how to have fun anymore. There is no levity, no relief for him.


#54

Hi @JooJoo . The whole thing is really just that, isn’t it? Heart breaking! Thought I would share with you that my son has almost zero insight into his illness, but I remember one trip we took, just before I realized that something was seriously wrong, and my son said to me that he was scared because he just didn’t feel anything anymore. He couldn’t be happy, sad, angry or even laugh. This stupid disease seems to attack that part of their brains first. The reason that I wanted to tell you that is that I’m happy to say, 3 years later and properly medicated, he can laugh again. He does feel some joy, and even sad, though it is still dulled down. The anger had quickly come back after that initial conversation as the disease really took hold of him, and he still struggles with that if he gets stressed about something. I wish you nothing but the best. You, like all of us on here, are a fighter, and will get this done!


#55

Streetshark 1972 - Your son could be my son. My son seems to be up all night, eating and drinking. We go through about 5 to 6 gallons of milk per week! He loves cheese; I used to call him my little mouse when he was little. So my question is: is this part of the disease or a by-product of the medications? My son is on Abilify at present. Besides being diagnosed as having schizo-affective disorder about a year ago, he was diagnosed as severly ADHD at age 6 (he’s 17 now) and he has generalized anxiety disorder (mostly social anxiety). I grocery shop once a week and at the end of the week, the pantry is bare!


#56

10 mg/ day zyprexa is usually a therapeutic dose: https://www.drugs.com/dosage/zyprexa.html

For some people who take it, it does contribute to being tired. My family member slept 12 - 18 hours a day.

I personally feel that the best thing is enough medication to break through psychosis, though it seems like no one’s psychosis goes away completely, then engagement with programs like EASA or outpatient.

It seems like your son is on the right track. I guess everyone has written this: it’s not a sprint; it’s a marathon. We all have our good days and bad days…


#57

It’s interesting, sometimes he sleeps all day and other times he stays up all night. He favors the excessive sleeping though, for sure.

I am just chomping at the bit waiting for his first EASA appt. on Friday. It is the only thing that gives me hope right now.


#58

Just read an article about how patients can hold jobs even while experiencing positive sz symptoms. It’s the negative ones, the ones that meds DON’T address, that keep them from going out into the world.

One of the study groups either weaned off meds totally or reduced them and even though positive symptoms came back to a degree, they were able to socially re-integrate more than the other study groups.

There needs to be therapy for the negative symptoms!