We need a miracle

My son’s nonverbal and bounces in and out of catatonia. He’s totally in his world with his legions of voices. Forget Hygiene!
His symptoms resemble severe Dementia.
Medication’s are no longer working. Clozeral is the next step.
I’m devastated, exhausted, and terrified he will stay like this.
Any positive outcome’s in this group for loved ones as sick as my son?
Bless all of you amazing parents :pray:

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What is your son’s age and is he under the care of a psychiatrist? Very sorry you’re going through this.

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Been going through this for 14 years.
Schizophrenia has destroyed him💔
Thank you :pray:

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@Sadmom Clozaril has been a miracle for many of our family members. There have been families that had totally given up hope and Clozaril opened up a window of hope. You must remember that this is a med that takes a long time to work. The benefits gained are small at first, but they will continue to improve.

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Yes, sometimes people can get better and reach a place of less difficulty, after suffering through the worst, darkest phases which it sounds like your son is in right now. I’m not a parent, I’m a sister, but I watched my mom go through this, back in the '80s, while my brother spiraled down to the point of catatonia, rocking, living feral almost, with hardly two words making sense for what seemed like years. Then there was a slow crawl toward more stability, with each gain feeling like an Olympic gold medal-worthy event.

So sorry you are suffering like this. The miracle you can have right now is knowing you have withstood seeing your son in this state and you are still standing. Which means you are strong. Take care of yourself and your nerves while you’re in this storm. Sleep. Take walks. Don’t think catastrophically. Comb this forum for advice on meds and more. Cry. Hug yourself. Talk to your higher power.

Good luck. I send you my best thoughts.

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I hope a miracle comes your way @Sadmom . Keep hope alive.

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We’re in TX. The only medical office that would accept a SZA is headed by a religious psychiatrist who personally only treats severe depression. His PA sees my 32 yo son for 5 minutes once every 3 months for his Invega Trinza injection. After 14 yrs of this, the meds don’t seem to be working. He finally got violent with me twice recently. I’m 69 and fragile with various auto-immune disorders (like rheumatoid arthritis). Tho I’ve begged his PA to try other meds, she only added vraylar pills, which my son is too sick to remember to take them or they don’t work. I call to remind him and he says sure he took them. Well, he is 6’2”, 350 lbs (thanks meds) and I’m 5’6” tiny boned. He chased me on the patio and shoved me down the first time he was violent. I had huge bruises on hip and scraped an arm and leg. He lives in a studio near me. Driving him there recently he got enraged and lunged over to me with his huge fists clenched and said, “I’m going to let you live.” I was terrified and driving. I calmed him down carefully. All because I won’t replace the car I bought him which he totaled in 18 mos working for food delivery service. He has severe daytime sleepiness which caused the accident (likely severe untreated sleep apnea). Saying gently that we’re worried about him getting hurt driving while sleepy enraged him. Plus, He wants a car and $50-100 a day for food & whatever. Of course, he doesn’t believe me when I tell him we can’t afford that. Many issues here but after months of telling his PA he needs different meds, she’s done nothing even while he’s violent. His apt mgmt refused to renew his lease so I’m moving him soon to another. I know he’s ready to explode but there is NO HELP. My husband, his stepfth, (met my son after he was diagnosed) just had his dominant shoulder totally replaced after bad fall crushed the bone. So it’s all on me. I’m also very immunocompromised and my son won’t keep his mask on inside my house. Yet he wants to watch tv with me. I’m so scared to be in car or house with him but I’m all he has. (He hates my husb. Son wants to live with me but can’t so he blames my husb). I’m rambling, sorry, so stressed, 4 hrs sleep nightly. I’m sick with worry and dread. I don’t know what to do. I hesitate to get police involved because he always convinces them he’s fine then he’s angry with me. He is smart, has his BA but is very sick with no insight. Any ideas? I have severe brain fog and it interferes with my thinking.

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Absolutely. My son was very sick and catatonia is the primary indication of the illness for him, including missing and homeless for 3 months, refusing meds, refusing to eat or drink, and formal thought disorder. Clozapine was a LIFE SAVER for him and I wish I had not waited to start our son on it. I highly suggest reading this book https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X. And I especially suggest connecting with the private Facebook Group “Team Daniel and the Clozapine community”, which follows Dr. Laitman’s protocol described in the book. I initially had turned my nose up at another Facebook Group, but THIS ONE has been SO HELPFUL from a medical aspect and everything else we deal with specific to individuals and their families who are on Clozapine or desire to be on Clozapine.

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Dear @SATXmom , there are many posts on this site about resources. I highly suggest NAMI and reading the book “I Am Not Sick; I Don’t Need Help”. I especially have become a HUGE believer in the anti-psychotic CLOZAPINE. There are grassroots efforts underway to get the FDA to change it’s wording about when Clozapine should be prescribed and to also significantly change the REMS requirement for getting labwork to monitor white blood cell counts.

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Where are you in Texas? Any chance you are near Houston?

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Thanks for your feedback. We’re in San Antonio. Can’t even find a dr here who’ll accept my son as a patient (they only want depression and anxiety cases). I hope Houston is better. I don’t know anyone in our situation in Houston. I hope to find other families here but it’s hard. Do you know any folks like us in SA?

Forgot to mention we asked for clozapine but the PA thought the labs would overwhelm my son or he’d not take pills. She never asked him.

I don’t know any contacts in San Antonio. There is a great psychiatrist on the north side of Houston who specializes in severe mental illnesses.

Other people have reported that some doctors are reluctant to deal with the hassle of clozapine. If your son would be compliant with the required bloodwork, your search for a new psychiatrist could focus on a clozapine supportive situation.

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SATXmom-
I am very sorry to hear what you are going through. I have had the same experience of feeling afraid for my safety but not wanting to call the police, but it may be your only option. Your life matters too.
Do you have any alternatives in your area (crisis team etc)? You can write a note specifically stating your sons behavior so that they will see that he is a threat to others.
I assume that there is no way that he will go to a hospital voluntarily? Can you get the PA to help you get him hospitalized?

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Is there a university hospital in your area? Drs in this type of hospitals are often more available and willing to prescribe clozaril/clozapine.

He’s 30. 14 years we’ve been doing this :broken_heart:
He’s had many psychiatrists.

I’m having a hard time replying directly because my response drops to the bottom of the page.
I’m not technically gifted.
To the 69 year old woman from Texas,

I’m so sorry :
I’m thinking he needs a mood stabilizer!
It also sounds like his current medications is no longer working or it could be causing his hostile behavior. Will he try some lithium?
Clozeral might be your miracle🙏

To answer others in this post
Clozeral is our next step.
I do have Dr.Laitman’s book and phone number.
I belong to Team Daniel as well.

I’m so grateful for all your support
Thank you :two_hearts::two_hearts:

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There is a website by Bethany Yeiser. You could try to connect with her and the work she does.
Bethany Yeiser, BS, magna cum laude
President
CURESZ Survivor and author of the book Mind Estranged

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Thanks for your comments. They help.

Sadly, Gov Abbott recently cut $200,000,000 from mental health services. So when I called our local mental health Crisis Services they said sorry, can’t help, just call police or go to court for involuntary hosp. They used to visit the poor SZA and assess him and talk to him. TX is now bottom #50 for worst (least) mental hlth care. It’s a nigtmare here for mentslly ill and families. My nurse relatives back east tell us about all the services their states provide. (Maryland, Massachusetts and NY are very helpful, lots more support and resources)… We might move. A neighbor sent his 32 yo SZA son to a residential program in Penn. He lives in a big house with great staff but $10,000-$20,000 a month is for rich people only. The rest of us are on our own. Only addicts, vets, and alcoholics get help here. I’m glad they get help but our suffering loved ones did NOT ask for their terrible burden. It’s a curse. Sorry to vent. My poor 32yo son, 350lbs from his meds (from 190, 6’1”) came over uninvited, saying he’s sleeping on our patio tonight… He’s being sweet but he desperately wants to live with me and his hostile stepfather. He’s too noisy, disruptive and constantly wanting meals, drinks, my company…I love him and do lots for him but he wants my wonderful husband to leave so he’ll get all my time. Im 69 and battling several chronic disorders that cause 24/7 pain all over my body, so I’m not equipped to give him all he wants, poor guy. My heart breaks but it’s still hard to handle. I know he’s so lonely. We talk many times every day and visit 3x week. I rent him a nearby apt and pay ALL his bills, meals etc. as he can’t handle money. Am I a bad mother to want some life (and peace) of my own?

Thanks for your feedback. It is helpful!

His PA says that because his psych meds put 150 lbs on him that he doesn’t qualify for clozapine. We just can’t find ANY helpful provider who accepts SZA pts in their practice. And he needs different meds (current ones not working well now) but PA not interested in tapering him off meds and starting new ones.

We try so hard but need partners in our treatment team, not just me.