My son’s suffering

Hi,

I’m new to the forum. I’ve been reading the posts recently and decided that I need some shoulders to lean on. So I decided to join. My 26 year old boy was diagnosed with schizophrenia/schizoaffective disorder 6 years ago. He was prescribed Risperidone for a couple of years, rexulti for 2 months (made him violent and got him arrested. He was back on 5 mg of risperidone, then paliperidone for few months. Nothing really worked. So another psychiatrist decided to add Pristiq to the AP. All hell was let loose because he went completely manic! And he was forcibly hospitalized for 2 weeks. Oh how he hated me for that!:cry:. Another emerg psychiatrist decided he was probably bipolar or schizoeffective and switched him to Seroquel. That made him even more manic. Anyway, long story short, our family is suffering. It’s heartbreaking to see a brilliant, beautiful child become an angry, at times aggressive man. We are stressed and ready to give up!
Sorry about the long post! Like I said this horrible disease isolates you. Thanks to all of you for being here supporting each other.
Right now my son is in the middle of a psychotic episode. He ran outside angrily but thankfully came in 15 minutes. This has been happening frequently the last few days. I don’t know what to do!

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I am sure there is a med that will work for him. Do not lose hope. It is a good thing he is accepting medication. Make sure you have a psychiatrist that he trust. Take it day by day and take care of youself.

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Thanks for your words of encouragement! I’m finding it difficult to find another psychiatrist because of the Covid lockdown. It’s a relief to be able to talk to someone other than family. Warm wishes to you!

You’ve found the right place to read, laugh, and cry among friends who have walked in your shoes. Welcome.

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Terra, I am so sorry for what you’re going through and know the helplessness you feel at times. One thing I might suggest is to get very chummy with your pharmacists. On more than one occasion over the years, they’ve brought issues to my attention that had to do with the medications prescribed for my son (interactions with other meds, etc). I honestly wish it wasn’t so hard to find a really good psychiatrist. I understand that the mind is a peculiar thing and unfortunately we can’t “fix” them as we would a broken bone but I keep hoping for more research. Please try to take care of yourself since our sons rely on us more than we could probably ever imagine. `love my son but I hate this @?&@!! disorder! Welcome to the group! :palm_tree:

Yes, thanks! I need to laugh. Forgotten what that is!

Thanks Pookey52! I have stopped taking care of myself since my dear child’s dx 6 years ago. I was obsessive about making him ok…meds, supplements, psychologist… Nothing works! After a while we are back to square one!

In the last 6 years, he has been hospitalized once. And has sworn he would never go back again! At this moment he’s in the throes of intense psychosis. Angry, aggressive and not engaging with family! This has been going on for 3 weeks. It’s the evenings that he’s at his worst. So my fear starts building up late afternoon when he wakes up and the loud, angry soliloquy starts till 2 am in the morning! Some days he doesn’t sleep at all. I’m not sure how this is going to go😳. Any advice from someone who has gone through similar stuff?? I’m in a constant state of fear and stress anticipating his next move. Thanks for going through my distressed note!

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Terra. Does he live with you guys? Our son did too. Up until April last year. We walked on egg shells. In great fear. We didn’t even know how bad it was until he was forced to be out and placed in his current treatment plan. And when he was gone…And we knew where he was…And it wasn’t close to us…And that we were safe… we exhaled for 2 days in relief…

We are just now 8 months without him in our home and my wife is only now dealing with her ptsd. Her energy, activities, hobbies and our ‘married life’ had all been on hold. For years.

It’s a blessing to be free and safe again. Obviously it’s still a deep pain and a long road with our son. but my point is that the pain now doesn’t include worrying about being kilt to death in my own home… :partying_face:

I agree with your thoughts on trying to find a good psychiatrist who will work with a person with SZ. My son and I do not think the one we have is doing anywhere near a comprehensive job. He just changes meds quickly without getting the real idea of where my son is at and makes my son uncomfortable as he is very abrupt and abrasive. I have looked for someone new in our area but just get the response that we are at the best place (our community mental health clinic) for someone with his diagnosis. But we don’t agree. Good luck with trying to find a better fit.

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The only thing that worked with my son when he was manic, wandering the streets all night, becoming so thin because of his mania was convincing him that he needed medication and needed to be hospitalized. It took a while but eventually his mind go so messed up he wanted help. He is now stable after a year and some medication changes. The weight gain is making him anxious now so he wants to get off the very meds that made him stable. Around and around we go.

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I’m so happy to hear that the meds are stabilizing your boy. It is a journey like our psychiatrist said. So many downs and some ups! The weight gain is what’s bothering my son a lot. He starves himself on most days and still putting on weight. The meds slow down the metabolism I guess. Lots of warm wishes to you and your dear boy. Take care of yourself!

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My son has been on 4mg of Risperidone since the end of December and he has gotten worse instead of better. I cannot tell if he’s spitting it out after I give it to him or if it’s just not working.

Oh, that sounds familiar! My son used to spit it out too. It’s so frustrating! Good luck with your boy. And take care!

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I can relate. The hardest thing has been searching thru meds . We have been through risperidone, ability, seroquel, vryldar and now haldol. Haldol is working now but I am trying to get him on a monthly shot- to take the daily compliance issue out of it.

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We are trying to convince him to get the shots as well. That is the only way to ensure that he is medicated. Right now there is no way to know if the med isn’t working or if he’s not taking it.

check out clozopine medication

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My 25 yo schizophrenic son has now decided the meds gave him akathisia so he won’t off clozapine which had been working great for 5 years. He tried many meds to find the right one and now has a new girlfriend who has convinced him he just needs to take natural supplements . Ugh I used to keep a journal when he started a new med. just simply good day or bad day then avg the good vs bad after a couple months. If he wasn’t doing well in a drug I fought them just increasing the side when it clearly didn’t agree with him.

Hi Terra, is there a NAMI organization in your area or can you join an online F2F group and start taking their classes? To support you and hopefully maybe begin to learn about different ways to deal with this episode. It sounds as if your beloved son is fully in grips of illness, so reasoning with him or expecting much of anything right now will only escalate. It’s hard, and I am still learning about how much I’ve been interacting with the illness, not my loved one, for many years. Remember your son’s brain is on fire and he is not himself. Especially in mania. My beloved person became a demon in mania/psychosis, an altogether different personality. And dark, aggressive, twisted, and scary, but it was the illness. Just as it is the illness talking when he’s depressed and hopeless. Meds do work, if he will consent, and he does need to crash out of mania before you can make a plan. I’m so sorry about this and how traumatized you and your family are. The only thing I know that works day to day is to emphasize with how he’s feeling in the moment, and remember you are talking to an illness, not your child. The goal is to get the symptoms under control, and you need an ally. Please Google NAMI in your area, and call the warm line in your state for you, if necessary. You cannot do this alone.

I keep telling myself it’s not my son, that it’s just the illness but what if the illness is who my son has become?

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I totally can relate with your son’s issues. My son is 27 and has been dealing with this illness since he was 21. The biggest thing is keeping him on his meds. If he does this we can work with it. Psychotic episodes are common until the meds work. My son has a DUI, so he has not Drivers License and so that makes him totally dependent on us. He has no friends… That’s the hardest thing, but it keeps him safe. Lithium has been a constant in his regime. Now he’s on a monthly shot of Invega Sust. He does so good on it. We are trying to get the every 3 month shot next. Luckily he was eligible for the COVID Vaccine. So he got that. Hang in there. Your son may not really know what’s going on. Keep a smile on your face and it’ll help…

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