My son quit meds


#21

I’m sorry that this is happening to you. We weren’t perfect parents but we did the best we could. It hurts so much that he thinks we did these things. He tells people we did too. These accusations did not start when he first got ill at age 21. He was on medication for 3 years from age 26 thru 28. They started after the medication. He told the spca that I killed our dog in the garage. They came out to investigate when my husband was home alone. He got so upset that they knew it wasn’t true. He told them he knew that our son was the one that called them. My son has told me he won’t quit calling the police on me until I am behind bars. I hope your son’s delusions do go away. This is so not fair. You were a good mother to your son!


#22

I am glad this young woman got help. It is good to hear about good outcomes. Thank you


#23

Hello to all,
My son Lou, as you may know was in an auto accident that resulted in an assault. He is currently in the judicial system. Lou is being evaluated for competency. He is between the state hospital and the judicial system. (Since may 2018). We have been in limbo land. Not really knowing what is going on. Lou is currently part of the “system in california.” It’s a long and sad story. You can look at my activity for the details.
We just found out that Lou is not med compliant. Which has led to his current state of decompensating, that’s the word the court appointed attorney is using. He is also having auditory and visual delusions and suffers from scizophrenia.
It’s good news, without medications he is not well and will probably get transfered back to the state hospital.
Lou suffers from a TBI due to an accident. He suffers from loss of memory and the assualt.
We, his family hope for mercy and the best situation for him. AnnieNorCal
Edit: You can pray for us if you choose, it’s really appreciated. Our story is so different than what the media knows. Our son is not a murderer or a bad person. I put this information out there to this community. Maybe there are other parents out there, who can relate. Peace to you all
Edit2: the victim from the asault is doing okay, not great, but still alive. Lou has not been convicted for his actions. Eventually that will happen.
His charges are very grim, and sad. Shalom
Edit 3: I’m sorry to burden you all, this is too much for my family and too much for them to listen to me. It’s just extremely sad and I have to get these feelings out, thank you for understanding


#24

AnnieNorCal,

I know we end up being grateful for things other people don’t understand. I am relieved that it appears your son will be staying in the state hospital where they will continue to treat him as a person with an injury and a brain disorder.

The news that he is not med compliant is at least some news of his current status. Some of us end up with very little information about our family member’s current life and have to satisfy ourselves with what little information we do receive.

The media is a mess these days, it always has been, and probably always will be. I try to trust the people that really know my family to know the truth and I try to not care about the rest.

I wish you and your family peace and will pray. Hope


#25

We were all the best parents we could be, we are all going to make mistakes, as Maya Angelou said, “when we knew better, we did better” - that’s the important part of parenting. People who are on this forum looking for answers and help - have to be incredible parents - just because they are here. Its a growth process for us and our children. It is so challenging to be the parents of children with brain disorders.

Mine has never been on meds - except for 3- 5 days on Geodon and one day on a combo med. He’s 36 now and the sexual abuse accusations/delusions showed up when he was 35 and grew quickly. I suspect the only reason he isn’t taken seriously by the authorities is because his claim is that we are “sexually abusing him through his computer”.

It could be that he was being harassed through an online video game, that is possible. Who has mental issues in that scenario? My son or the online bullies who get their kicks terrorizing people online?


#26

It sounds like you’re getting a little more information, probably through Lou’s attorney. It also sounds like he may finally have a diagnosis, which may be helpful in his defense.
Life in the hospital will be better than life in the jail- at least my son likes the food. :slight_smile:
He will get treatment and care in the hospital, more so than in jail. My son (who is med compliant) has gotten much better in the year that he’s been hospitalized. They will be able to deal with the effects of the TBI there too, better than jail.
And MAYBE once in the hospital he will be able and willing to sign a ROI so you can at least have information on how he’s doing and maybe visit, if Lou wants that. He will be assigned a treatment team including a counselor, who you may be able to talk to even though they may not be able to give you much information. My son’s counselor was very glad to get background from me and hear what a large group of friends and supporters my son has.
What a long, hard road… I think of you often. Hang in there, and do count your blessings, small though they may seem.


#27

@WAmac, @hope, and all of you-
Yes, my husband and I both know how gracious the system has been with our son and we are very grateful, certainly higher powers at work here.
I so appreciate you all and even though I have never struggled to care for a loved one, I have great compassion for you all.
As far as the involvement of the media, they only know some of the facts about Lou. The bad stuff.
We live in a small town and know many people. The other day an old coworker stopped me in the street to talk about Lou and everything that is online. I nicely explained the auto accident but I did not talk about the assualt. She quickly left. Not trying to make people uncomfortable but it does. We have never been very social and keep to ourselves. I have learned not to say too much about Lou.
Next February will be 3 years since I’ve seen Lou. As time has passed I’ve settled in to what the outcome of a sweet young man will be, spending many years in recovery. Time does soften the blow.
I’m back to doing a few things and taking care of myself physically. I have an instagram site, I like to paint rocks. I also find walking around our golf course very peaceful. Shalom, AnnieNorCal


#28

Oh AnnieNorCal - I don’t think that statement is accurate. We all struggle in different ways to care for our loved ones. We each have to do different things - whatever our family member’s situation requires - once we can figure out what we can do to help. You are struggling to care for your son exactly like we are with our own family members. The methods aren’t identical but the struggle is the same. Peace and strength to you AnnieNorCal


#29

Our son used to accuse us of trying to kill him and he once called the police (when he was hospitalized), and they showed up at our house. He told them I was suicidal and needed to be put in a mental hospital. The police came to our house and asked me if I knew why they were there. I told them I assumed it had something to do with them being called by me a few days earlier to have my son involuntarily committed. That’s when we figured out that he was the one who had called them.

I’m so sorry for all of you who have been accused of such horrible things by the children you love so much. @AnnieNorCal - I am keeping Lou and you in my prayers.


#30

That sucks that 1 thing could change his decision for the meds. I agree with wrekllus, we just need to try and be there unconditionally for them, set boundaries and they have to make their own choices otherwise we are constantly blamed for the outcome. Hang in there.


#31

@Donnaod

I am so sorry that your son quit meds. My son has been back on meds for 10 months (after being non med compliant for about six years) and every month I hold my breath before he gets his Invega injection. Praying that your son will get back on medication at some point.


#32

do you have to Take the high Dose of 234mg. I was told that Invega have side effects that can impact the liver. I have read that Maintenance dose of 117mg is good enough to help prevent psychotic episode.
My son is taking 117 Mg Invega shot monthly and he is has bene on it for almost 6 months now. He does not want to be on it but he is taking at a Rehabilitation Facility.

I like the idea of alternating. I am going to communicate this to His social worker.


#33

Donnaod,
I was in your position on year ago when my son stopped the injection and medicine cold and went to California. I knew where he was and he stayed with a family friend for few months then became so sick and drifted to another County in California and ended up in Jail for a week then was released and in and out of hospitals multiple times. I had high anxiety last November when I did not know where he was and contacted the law enforcement in the county where I suspect he was at and one police told me that he was seen Homeless. The police reached out to him and ask him if he needed help then he disappeared again and I was still contacted the same police who lost t Track of him. Then I contacted several hospitals in the County and filed a missing report. another 10 days passed and I was getting extremely anxious and was planning to run an Ad on local TV station in San Fran… then I called The police again to check on the missing police report and they told me to check one hospital. I called he Hospital and after checking with several nurses in he ER and Main Hospital, I was able to locate him. He was admitted in that hospital. I was like a XMAS gift knowing that he alive. I was so excited to hear his voice. he was hostile toward me of course but I expected that. Late, I spoke to his social worker and the doctor and pleaded to the doctor to recommend him for conservatorship after I faxed her a detail letter of all the episodes that he has been through and all the hospitalizations and homelessness. I filled FORM AB1424 that is provided by NAMI/Ca and faxed it to his doctor and social worker and to his public defender and o mental health Judge and to a Political administrator in mental health office. I did everything I can to save his life. the letter showed that he can be dangerous to himself and others.
I would recommend contact a law enforcement in your area and a crisis team and prepare detail documentation to hand it out to the people who can help you. I would also contact a lawyer in your area and get an advise on involuntarily commitment.
I know this is hard!! I lived through situation… Hope thing gets better and you hear from your son soon.


#34

Yes, I have to take the high dose or it does nothing for me.

Based on my symptoms I’d rather have a mostly clear mind and be able to function with occasional lapses and dealing with possible side effects than live with making my family’s life a living hell


#35

ZombieMobie,
How long you have been taking the 234Mg dose and do you take any other medicine with it?
and how often do you blood test ?
does your blood test shows any sign of liver changes?
what side effects do you experience with Invega?

it is blessing that Invega Shot is working with you.


#36

I have only been taking 234 for one month. I’ve felt progressively better during this month.

I have a standing order for blood tests once a year due to autoimmune disorders. I have been in antipsychotics for over a year with no liver problems.

I haven’t noticed any horrible side effects. Until I began birth control I had stopped having periods often but am near menopause anyway. I had a lack of enjoyment but I discontinued my mood stabilizer and that has helped. DON’T experiment without doctor support.

The problem with worry about side effects is that symptoms from the disease are often mistaken for side effects of the medication. Before the increase in dose I thought my instability and increased aggitation and memory problems were possibly from the medication. I blamed the shot.

Now? I’m more stable mentally than before. I even stopped needing the PRN risperdone! Those were just in case I had any symptoms of my illness until the Invega took effect.

It is really hard to explain how insidious schizophrenia and schizoaffective really is when it comes to fooling us. The brain can make us believe that medicines are poison when they really are not. Invega and risperdone saved my life. In August I tried to overdose because I believed that the symptoms from the disease were mental instability from the shot. I believed my family was trying to drive me to kill myself.

All it takes is just a little willingness to keep trying different meds and different mixtures of meds. I can tell you with complete truthfulness from the sick side that side effects are far better than psychotic behavior and delusions and hallucinations.


#37

Thank you for sharing @ZombieMombie! This is incredible insight into things those of us who care about our loved ones need to know. Even many of us, I think, too often blame the meds when it is really the illness. Each person is different, but this is very helpful, I think. I am elated that you are doing so well. I hope things continue to go well for you!


#38

Could someone please tell me how to apply for ss benefits. My son is 20, will not take meds, been hospitalized twice, will only leave the house with me, even going into the store is a struggle… We have to wait in the parking lot until the store is empty if someone comes in he will either wait inside until they are going to check out or will leave. When he is in the car he sits way down in the seat so no one will see him.

My son yells a lot to himself, calling us names, saying we should kill ourselves that we are ugly pathetic and trash. What should I do when he does this, do I just let him, trying to calm him down just upsets him more.


#39

It is important that he somehow get on meds. I used to make my husband go to places that had no one around. That eventually stopped but only after years of self help stuff. I still was afraid of going places but could tolerate it. I am stable but still dislike being in public. I got on meds last year after decades of wrong diagnosis due to hiding symptoms. It changed my life. Maybe you can tell your son to come to the DX’d side of this site to talk to us MI? We are pro medicine and therapy over there. There are so.e who are not but threads are not allowed that tell others how to avoid meds.


#40

My son was on meds for 3 years and his caseworker at our local mental health agency signed him up for ss benefits. I was really lucky at the time that this was all done by her and I was assigned his rep payee at the time. I believe that you could try and sign him up online.

I learned at NAMI that when my son calls me names and say horrible things to say “I’m sorry you feel that way:” Sometimes it works and sometimes not.