Family and Caregiver Schizophrenia Discussion Forum

Looking for some help


#1

I am a mom on a mission. I have a 19 year old son who was diagnosed with schizophrenia. He has been on seroquel, risperidone, zyprexa and now just starting Latuda. He has gone through periods of no voices to periods where he cannot handle it. I Am at a loss. he takes Adivan for anxiety which sometimes does not work. I know he has smoked pot a few times and believe it or not it takes the voices completely away and the anxiety. I know this is not the answer. I’m curious as to what meds others are on. Or what they need from their support system so maybe I can be better for him. How do others prepare for an episode? Or how other parents cope. This is hell watching my son suffer. Anyone willing to share with me I would greatly appreciated it. Thank you.


#2

Successful treatment with Medications is defined as a 20% reduction in symptoms. I don’t say this to be mean or hurtful. There is a very Real possibility he could deal with voices for the rest of his life so I would suggest the 2 of you coming up with a coping strategy.

I’m Schizophrenic my mother has GAD. She takes meds but still has Panic attacks, she says I am excellent at talking her down. I just tell her things I learned in talk therapy (which she refuses to attend). Hope this helps you.

Everyone is different I have 2 ‘voices’ in my head that I have always known were just me. Just different aspects of me personality, the don’t tell me to do anything and are generally just looking out for me. So I can’t speak to how to deal with 'scary ‘voices’ never had to personally.

Everything is Temporary, the bad moments are just as fleeting as the good.


#3

I guess I was very fortunate when I found the doctor that finally got my son stabilized and voice free, he was very persistent and aggressive in his treatment approach and on seeing marked improvements in my son each and every time we saw him…he would never have settled for a 20% reduction and left it at that --he would have said we have a 20% reduction now lets go for 40% etc etc…my son was on a medicine “roller coaster” for quite awhile…but in the long run it was worth it because after a dozen or so meds over a few years we finally tried Clozaril and my son has been virtually voice free for over 4 years now…I feel blessed. I wish everybody that amount of recovery and more.


#4

TheInsider,
thank you for your response. We are working on a coping strategy. He has a safe place, where he feels the best when the voices start. We also do a lot of exercise to try to keep his endorphins going. I know you are not meaning to be hurtful at all. I know this is going to be a life long stuggle. However I will not accept 20% now or ever. We were actually voice free for several months on Zyprexa. Had a break through psychosis and now the med is not working. I just feel in my heart I cannot stop until I find something that works for him and he can live somewhat of a normal life.


#5

Catherine,
Thank you for your response. I cannot tell you how much I appreciate both you and TheInsider sharing your stories with me. I am with you totally, I will not accept 20%, let alone 50%. I am on a mission to make sure we leave no stone unturned. I am very happy for you that your son has been in recovery. You are very fortunate to have found a med that is working for him. We are still in that process. I will keep you and your family in my prayers.


#6

Its a tough mission we are on. I hope for the best for you. If your son accepts his diagnosis and is joining you in the mission, you will likely have good luck.

Is your son’s current antipsychotic working? My son’s psychiatrist did finally start him on Clozaril, which is a med for people who appear resistant to other antipsychotics. I fear that the length of time it took to reach this conclusion, and my son’s multiple episodes of psychosis over the last 6 years has left him with permanent damage.

Regarding ‘preparing’ for an episode - not sure there is much to be done. I reached the point of not going into my son’s house - ever - without my phone, in case I needed to call for assistance. And learned to exit sooner rather than later if his psychosis had him very agitated.

If your son is accepting of it, you can help him identify when he seems to be deteriorating, and help him develop coping skills.


#7

Our current med is Latuda. This is number 4 for us. We are not even into a week of it yet. At this point the psychosis is not good. He is trying his best. I often find him crying hysterically. He is normally alone during the day (7am-3pm) but I need to change this. Being alone makes it worse. I am just at a loss for coping skills The therapist has him listening to music with ear buds. We try to walk or even go for a run but this still doesn’t always make it better.


#8

This isn’t Real, it will pass, I’m just being Schizophrenic. Is pretty solid.

I used to see Shadow People as a kid, they used to frighten me until I started confronting them and realized they couldn’t hurt me and had no control over me. Perhaps he could try something like that.

I don’t want to give you false hope, but I haven’t had a visual hallucination in 16yrs. Also I’m a fairly logical person. Studying the Nature of Human Perception has helped me greatly. I like to Intellectualize, it’s my go to Coping Mechanism


#9

I appreciate you telling me this! More than you know. I will share it with him tonight. Thank you so much!


#10

My son was diagnosed with bipolar, sza, social anxiety, PTSD, manic depressive…I mean the list went on and on!! At one point he was on 13 pills a day!! He was a zombie at age 19! It took till he was 30 for the Drs , and we’ve had many, to give him a shot called .invegasustenna It is a once a month shot and it has worked great! Now, as with all antipsychotic meds weight gain can be an issue but we watch his food intake and only have sweets as a treat once a week. With the shot, I don’t have to worry if he is taking his meds right or not!! And that was a big issue for us. Worth looking into! Good luck!


#11

@cjcdmc4 Just a thought, how long ago was your son diagnosed? Also has he worked anywhere before he was diagnosed? I ask these questions bc when my son was diagnosed at 19 he had worked at several jobs but never able to hold one down for more than a month or two. I was advised by his physchologist to check into getting him on ssi and ssa which I did and he was approved! He gets $750/mth. Really helps out. Bc of his disease he is unable to manage his own money so I am his representative payee. Didn’t know if you had thought of this yet or not.


#12

He was diagnosed within the last year. He has tried to do numerous jobs and hasn’t been able to hold one. Yes we get disability. Thankfully it went through within three months. Thank you!


#13

I’ve read a lot are on this med. I will ask about it when we go back. It’s day 5 on Latuda and not helping as of yet.


#14

You are in the right place. Early diagnosis is important and there is so much to learn. It is a noble journey both for you and your family and it can be very hard but you will find your way. God bless


#15

Yeah Latuda didn’t help my son either. Glad to hear he is already on ssi/ssa. I’ve been trying for myself since February 2015 when I lost my job to migraines and they have only gotten worse. I don’t mean to sound hateful bc I love my son deeply but I think he is part of the reason they have gotten worse! Dr says he has the mentality of a 12 yr old and he is actually 31. Trying to tell a 31 yr old kid what to do or not do is like trying to lasso a mosquito!! :grinning:


#16

I don’t think you sound mean at all. I understand your feelings. I was always and upbeat happy person. Since dealing with this I have become anxious and sad. I’ll hear my phone go off and see his name pop up and it’s immediate anxiety. It’s very hard to deal with and I am only into the first year. I am so thankful I found this site. I know our children need support but we do too. I told my son that we will give this Latuda the two to three weeks and if it doesn’t start helping we are moving on. Just hate all these medicines!


#17

I feel your pain. A Pdoc told me you should start seeing something after 6 days but full affects can take 2-3 months. We see doc in 5 days. As soon as our son wakes up or comes back, he turns to drugs and talks about being high for life. We either live with someone totally into their own word or someone craving any hallucinagon he can find. The doc doesn’t think the medicine is responsible but it is part of his delusion. Does anyone have any experience with this and suggestion on what we can do to help him. We’re trying to keep him busy but it is exhausting. Help needed.


#18

I have no answers for you, but I can send prayers! I had my son come to me and tell me he tried pot. I said okay and what did that do for you. His response was mom it took all the voices away and stopped the anxiety. How do you as a parent respond to that one? My first thoughts were then do it! He has not turned to anything else. I cannot imagine what their heads go through. I am assuming they just get to where they need a break and want some relief and do whatever they can to achieve that. I am at a loss. Wish I could help you.


#19

I think he’s ‘yanking your chain’ or lying about the pot being helpful. Marijuana causes psychosis, lots written about it.


#20

not so sure about that. I have had conversations with his doctor about it. It can have either affect on someone. You can have the paranoia side of it or the calming. If it does help some, I hope they make it medically legal for psychosis.