Sunday, September 26, 2021

Comments by gardenlisa

Showing 31 of 31 comments.

  • You have no idea how encouraged I feel right now by your reply. I really appreciate it.
    My son had obvious signs of mild autism even as a baby. As he grew, he matured and was a pretty happy, normal child. He was extraordinarily gifted with an amazing memory and had obsessive interests that were also a gift to the rest of us, because we all learned so much from him!
    When he lost his friend (through a family shunning us), his life took a huge turn for the worse. He became very depressed and had outbursts that made the other children afraid. We tried counseling. We took him to see his pediatrician, who suggested antidepressants, which we refused. We saw a child psychiatrist, who was no help at all, as he wouldn’t even listen to my son, who was longing to express his emotions to someone who could help him.
    Finally, the pediatrician suggested strattera, which some stupid report said “helped” autistic people. We resisted at first, but when his behavior got worse, we decided to try it. No other options seemed available. He was 12 years old.

    I’m sure that was the initial problem. And I regret it so much.

    My son developed severe OCD as a result of that drug, I believe. We stopped giving it to him about 9 months into drug therapy, but he didn’t improve. I didn’t make the connection between the strattera and the developing OCD at the time.
    It’s been hell for us. Why don’t they tell you that giving just one, innocent-sounding psyche drug to a child can lead to all this crap?

  • I have been posting on this thread because I don’t know what else to do. Being able to read these articles and interact with many of you is the only thing helping me stay calm enough with the situation with our son. Otherwise, I would probably do something desperate and “force” him back into treatment. It’s really hard right now. Really hard.

    If his older brother ever decides he just can’t take living with him anymore, we wouldn’t have any other options, I fear. I feel like crying much of the time.

  • Thank you for your reply, Rossa. I keep trying to comment, but my Kindle turned off twice before I could post. Here’s my third try:

    I have taken the families healing together course you mentioned. It was very helpful and I should reread some of it soon.

    I know many of you won’t like what I have to say, but…..

    Seven years ago, we had no option, but to have our child (he was 15 at the time) forced into “treatment” at the hospital. I know it sounds horrible, and I feel awful about it after everything I’ve learned this year (started by reading, “Anatomy of an Epidemic” last December), but our entire family was being damaged by his behavior. My younger children were terrified of their brother at times. I still worry about the psychological damage that they have experienced because of his frightening actions and words. We didn’t know what else to do, and were promised solutions by the doctors and hospital…in the form of pills. And, you know what? It helped. We were able to deal with our son after that. somewhat. He wasn’t actually “well”, but he was safer to have around after that.

    And, that all ended after he went CT off his zyprexa.

    I know that it looks like we took away his rights and violated his freedom, but what about the rest of the family? Our freedom and rights were all dictated by the one son who was struggling to be mentally well.

    Before he went to the hospital in 2007, it was truly a nightmare. I spent countless nights awake with our son because he would cry hysterically from fear of sleep. We went out of our way to give him the things he needed, like a more comfortable bed and special clothing. If he didn’t sleep, the whole family suffered. I read to him and talked to him and comforted him when he was at his worst. I watched the same movie over and over to keep him company when he had no friends and his siblings could barely stand to be with him. I scratched his head, back, arms, and legs as physical therapy to help him relax at night. He was really hard to deal with at times, and the entire family was often controlled by his OCD issues. For example, we couldn’t watch certain channels or programs on TV, or he would have a complete meltdown. He would often stand in front of the refrigerator,with the door open for an hour or more, tapping something over and over. Our younger kids were traumatized by him at times.

    (Even after he started taking the psyche drugs, things weren’t that good, but at least we could sleep at night most of the time.)

    I know that the drugs have damaged him. I know that the brain chemical imbalance theory is a lie. I know that going CT off his zyprexa has damaged him pretty badly. I know that the doctors shouldn’t have started him on the drugs in the beginning. But, knowing all of this doesn’t help him. Or us. We are still a hurting family with no real solutions for our loved one.

    He has been the center of so much attention and time. We HAVE given him what we could, and tried to show unconditional love. But, how can we give and give and give to him, to the neglect of the other children? They need love and attention, too.

    We are in limbo. We don’t know what tomorrow holds for our son. We can’t throw him out on the street. He really is too ill for that. We can’t take him to the hospital, knowing what we know. It would be terrible to get him back in that system after everything. But, it’s hard NOT to do this! He just is NOT WELL. Mentally, I don’t know if he is experiencing delusions or psychosis, but I don’t think it’s too bad. His moods are unpredictable and he is often angry. He has serious memory and cognitive problems. And, all of his senses are all on overload. His body and muscles are weak.

    Do you have any idea what we are experiencing? We all love him. We want him to get well. We want him to have a REAL life again. Not what his life is like right now- staying in his room all day with the curtains closed, hot sauce splashed across every wall, crap all over the floor, torn clothing and sheets over the doors and around the bed. Various cans, bottles,pitchers, dishes, and silverware strewn about.

    Do you know what it’s like to have your son hate you, call you filthy names, and treat you like an enemy after years of practically being his only real advocate? This is my life now. I miss my son. I feel like I’ve lost him.

  • I appreciate your suggestions, but unfortunately, we wouldn’t be in this situation if my son had followed the suggestions made by myself and the naturopath we saw. Before he went CT, he was taking 3000 mg niacinimide, in addition to several other supplements. He had already quit an anti depressant and anxiety meds successfully. He was doing pretty well, then he went CT off zyprexa.

    And, here we are.

  • Yeah, there have been a few days in the past three months that we almost forced the hospital. However, we are really glad that we haven’t done that so far. He usually calms down and we can go another week before we have new issues.

    I am pretty concerned that he isn’t interacting much with anyone. He broke his phone several weeks ago, and doesn’t want a new one for now. He spends much of his day either trying to sleep out searching the internet. And, maybe cutting clothing up?

    I feel like his room needs a deep cleaning, but I can’t imagine when I could do that, since he won’t let me do much in there.

    As far as support…..I don’t have much. I mean, my family loves me and cares about their brother (son, cousin, nephew), but I’m the one who cleans and shops for him. I’m the one who feels the deep burden of this whole situation. I have friends I share with on Facebook, also, but most of the time I feel like everyone else is just tired of hearing about him and his problems. I really don’t blame them. Iwish I could just run away from it all. But, I can’t just forget and stop caring about him.

  • I’m afraid I didn’t explain that my son isn’t cooperating on any level right now, so, although I appreciate the herbs/ mineral baths ideas…….It’s not going to happen.

    I’m encouraged to think that maybe he will recover. How long will it take, I wonder?

    About a month ago, we were pretty convinced he needed to go to the hospital. The mental health agency in our city wouldn’t send anyone over, and suggested either: getting him to agree to go to the hospital with us, OR calling the police.

    We chose to do “talk therapy” (basically, me trying to calm him down for 3 1/2 hours), instead. It worked enough that we were able to go home and not worry for a while.

    I can’t really reason with him, he has a terrible memory, and is anxious, weak, and sleeps poorly.

  • This has been a very enlightening and interesting discussion.

    I am actually faced with this dilemma almost every day, since my son chose to go CT off his last psyche med, zyprexa, 3 months ago.

    He spends all his time in his bedroom at his older brother’s house. He lives in a mess of scattered clothing, some of which he has ripped for odd reasons, a damp bed without a sheet (he ripped it up, also), cans and bottles, junk, wire tied to the dresser, pieces of wood stuck in windows, and a general clutter of bits of old vitamins, books, and papers.

    About once a week, I really question the wisdom of our family’s decision to just leave him alone. He is extremely angry sometimes, saying frightening things about death-wishes for members of the family, even describing ways he wants us to die. He doesn’t really say them “to” us, but we can hear him talking to himself.
    Sometimes, I feel like taking him back to the hospital is the only option, but I have completely lost all faith in the mental health system here. I want so deeply to hope that he can recover from 7 years of drugging, but can he? Did going CT cause permanent harm? I don’t really know how to help him any more. A year ago, he was doing so much better than this. It wasn’t great, but it was a lot better. I keep thinking about the relationship we all have lost with him at this point.

    We can’t do anything for him right now. He won’t even leave the house. I bring him groceries, but he has lost a lot of weight anyway. I try to clean his room, especially when his older brother starts comparing about the bad smell, but he complains if I use any cleaning products, even natural ones. I can’t get him off the bed long enough to put down a sheet, even! I can’t even imagine getting him to the doctor for a checkup. Or the dentist.

    My husband and I were given legal guardianship last year, and I sometimes fear that we will be seen as negligent because we aren’t taking him back into the system. We have no real options here. I mean, it’s great to talk about the ideal situation of no force, but isn’t there a scenario where force might be required? He seems to be self-destructive, and unable to think our remember things much of the time, like a dementia patient might be. Would it be right to let someone with dementia harm himself? I’d love to be able to take my son to a hospital, where he could just recover without forced drugs and be treated with respect and concern, but that isn’t available.

    His older brother is choosing to let him stay, in hopes that his brother’s life can improve, but his own life has become fairly restricted, and the relationship between them is very poor.

    My own life seems restricted by my son’s suffering, and Iam filled with grief, worry, and anxiety for the future.

  • I felt so angry and sad when I read this article. My son was started on zyprexa in 2007, at the age of 15! We were told that keeping him on these meds would help him to prevent relapse. What a lie!

    In 2012, my son was incredibly sick, and he continued to take his zyprexa, along with some other drugs in his psyche med ” cocktail” faithfully every day. I know this because he insisted that I hand them to him personally. He was so severely affected by terrible OCD that he spent an entire day rocking back and forth in his bed, crying and hitting his head with his fist. We decided to hospitalize him. His therapist recommended he get a ” tune up” for his meds.

    After the 2 1/2 weeks of ” treatment” he received, being given a completely new “cocktail”, they sent him back home. He was REALLY, REALLY SICK, and the first day home, he climbed a ladder and threatened to commit suicide. He was so angry and crude that he alienated most of his siblings and family members.

    There’s a lot more to this story, but right now, our son is experiencing withdrawal from zyprexa, which he quit taking 9 weeks ago. He’s doing so badly that we considered getting him forcibly put in the hospital a week ago, but the mental health agency suggested we call the police to have him hauled there, and we refused to do that. Instead, we spent hours talking with him until he was calm enough.

    I’ve been second-guessing this decision all week, but this article is exactly what I needed to read! I don’t know how long it may take for my son to start recovering, but at least I have the evidence I need to wait it out, if possible. Thank you so much for sharing this information!

  • We have been provided some relief. Our son is going to be allowed to continue living with his older brother a bit longer. That means we don’t have to find him after place to live yet.

    Of course, this doesn’t mean that our son is getting better, or that I’m happy with the situation, but at least we aren’t needing to put him in the hospital because he has nowhere else to live.

    Now, if we could just get him some counseling with someone who doesn’t believe that drugs are the answer.

  • Well, he has taken it a couple of times, that I know of. He said it wasn’t helping enough, so I’m not sure he tried again.

    His anxiety is really out of control now, I just don’t know how much longer we can allow this to continue. He doesn’t hardly come out of his room anymore, and complains about his brother and the other roommate all the time.

    As you know, he lives with an older brother whom he really can’t stand. This brother has really given up a lot of his own enjoyment of music, etc, because the sick brother can’t take much noise. He used to enjoy playing his drums, guitar, keyboard. He can’t anymore. It’s pretty hard to just keep letting our sick son control his brother’s life this way.

    We REALLY have no options. The only place he can live is with his brother unless we get him back in the “system”, which will insist on meds. But, he is really making his brother’s life unpleasant.

  • All of the ideas people have shared have been helpful. So far, the main problem is getting my son to actually TAKE any advice from me. So, this is why finding another person who could talk to him would be better. Someone who has also experienced what he is going through. Not only am I his mom, but I was his main caregiver for years, administering the meds each day. It’s hard for him to understand that I don’t want him to end up back in the hospital, and that I am really trying to help him without using drugs now.

    He won’t take the drugs, even a little bit. He is very, very determined not to go back on them again. I believe sleep would make a huge difference. I have purchased some melatonin and magnesium supplements for him, but it’s up to him to actually take them.

  • When we went to see our son yesterday, I showed a printout of the hateful things my son had sent to me on facebook, to his therapist. I was hoping we could discuss the reasons he felt a need to say such things.

    My son later told me that he didn’t really mean those things, but he can’t seem to control what comes out of his mouth. He talked about feeling like the real person is inside him, and its hard to fight this angry side of his.

    When I tried to convince him to come with me to the hospital, he became angry, said they never help him and only make him worse, that they are inhuman and tortured people and that he hates that place and hopes it burns down. After hearing him talking about the traumatic experience he’s had in the hospital, I just couldn’t force him. I know it’s true- they never do help him, and in 2012, he came home sicker than when we took him there.

    Where are the people who can help us!!!!?????? Is there anyone in the Spokane area who Won’t use drugs?

  • Yes, I am learning that the terrible things he is saying are just part of his uncontrolled anger. We talked for several hours yesterday, and it was helpful to realize that he is still really suffering with withdrawal, so he doesn’t have a lot of good things to say because he still feels like crap. I felt like the talking was a good sign because he’s been pretty unwilling to talk to me for a while.

    I feel that it was an unexpected blessing that the mental health agency was so unhelpful, because it made us decided to give him more time. I don’t want to feel too optimistic yet, but I’m still hoping SO much that he will stop acting like such a jerk so the rest of us can help him.

  • His therapist is seeing him today, right now, while I write this. I am sitting in my car, waiting to talk to the therapist.

    He likes his therapist, his younger brother, and his two oldest siblings. (He has six siblings)

    He has been writing hateful, vengeful, cruel, vile things to me on messages. He has verbalized some death-wishes for several family members, including myself and his father. There has never been abuse.

    He has a mild form of autism, which further complicates everything.

    He has very little control over his impulsive thoughts and feelings. Right now, his anger is completely out of control, and what he says indicates a desire for several of us to die.

    I’m sorry, but I really think we will have to intervene before he ends up hurting one of us, himself, or another person.

    I appreciate this website, the opinions offered here, and all, but we need to take action, even think I know it means drugs.

  • He has been angry like this, even before he took any drugs 8 years ago.

    He is a bit delusional- but not terrible. He is having incredible anxiety and says he can’t sleep. I begged him to try melatonin. I just thought if he could get enough sleep he’d feel better, but he won’t do it.

    He has some reasons to distrust us, because he blames us for getting him on the psyche drugs in the first place. But he believes that several of us conspired to take a childhood friend away from him. That’s not at all what happened. The kid’s family basically shunned us over some ridiculous religious dogma we wouldn’t buy into.

    We all liked him a lot better when he was on the drugs, but after reading books and watching documentaries about psyche drug damage, we decided to support his decision to get off of them. We knew this would be a hard road to travel, but didn’t think this would happen. We can’t help him now. He won’t let us help him and thinks we are his enemies.

  • Our son is incapable of taking care of himself. If we kick him out, he will end up on the streets, and it’s getting cold. They will probably arrest him and lock him up anyway if we do that, and he will end up back on the meds since they will see that he has a psyche history.

    I know what “should” happen, but it doesn’t exist in our area. He needs a safe place to stay while he continues getting through withdrawal, but there just isn’t anything like that in our community. It’s just drugs, drugs, drugs.

    My husband and I are his legal guardians, which complicates things.

  • Thank you. The brother that is living with my distressed son has been incredibly kind and patient, in spite of the rude, hateful things he says, the meats he makes, and the damage he had done to the bedroom he stays in all day. He doesn’t want his brother to suffer at the hands of psychiatrists anymore, but isn’t sure how much more of this he can handle. He had taken to locking his bedroom door at night.
    I heard from him this morning. His brother was talking loudly in the hall at 2:30am, saying threats, and woke him up. The situation isn’t safe.

  • Oh, and he won’t read any of that information on surviving antidepressants. He refuses to talk to anyone else who’s been there and succeeded with withdrawal. He doesn’t think any of his problems are from withdrawal, and he thinks I don’t know anything, so any information I learn can’t help him if he refuses to read it or listen to me. Believe me, or whole family is incredibly sad about this. We have all been very supportive of him as he’s been getting off the psyche meds. He got off the anti depressants in December, the anti anxiety meds in January, and then tried to taper off zyprexa in March. Even though we have been encouraging and trying to help all along, he now hates us and things we’re conspiring against him.

  • We tried to tell him not to go cold turkey. This story is really long, and I might write it all out someday, but my problem is, where is he going to live? We will be forced to put him back in the hospital soon. We won’t have a choice. We really don’t. have .a .choice. How can we just watch him slowly kill himself? Or end up hurting one of us because his anger is raging and he hates all of us? We can’t keep asking his brother to live with him when he wishes death for him. He can’t live with us because our 15 yo is afraid of her brother, and gets depressed around him after so many years of living with his unpredictable behavior. There isn’t another place for him except the hospital. We are really desperate.

  • Hi. I haven’t ever posted on here before, but I’m looking for some ideas and support. I have a 22 yo son who has been in the hospital 4 times. Believe me, we didn’t know the things we know now for three of those hospitalizations. The last time, however, we just ran out of options.

    Here’s what happened: My son quit taking his zyprexa cold-turkey on March 29, and the first two weeks went great, but the third week, he became filled with rage. We did everything we could to keep him out of the hospital, but after 8 1/2 weeks, he was scaring all of us, and my 15 yo daughter was living in fear all the time. Our son has no friends, and no place to go, so he ended up in the hospital. There simply were no alternatives. That was back in May. We did everything possible to get him out of the hospital as soon as possible, and he was on a very low dose of meds. He took the meds, pretty regularly, for about 6 weeks, but then, he quit them again. It’s been almost 8 weeks since that time now, and he’s angry again and talking to himself all the time, saying threatening things about wishing we were dead. And that he wants revenge on us. It’s so frightening. Right now, he lives with his brother, who agreed to take him in back in February, when we removed him from a LRA facility. He was getting along with this brother until he quit the meds. Now, when he’s talking in his room, he says cruel, hateful things about his brother all the time.

    Ok, so here’s our dilemma: our son is verbally abusive, saying threatening things about the only people who are trying to help him, and is treating us all like enemies, even though we are trying really hard to keep him off the meds and out of the hospital again. I mean, it’s nice to have this conversation about why psychiatry is so crappy and how psyche drugs are awful…..But what can be done!? In our situation, trying to live with someone like our son is HORRIBLE, and he doesn’t have any where else to go. I don’t want to put him back in the hospital, but seriously, what options do we have? There isn’t anything available that won’t use drugs. We have two choices: live in fear with this person who hates all of us , or put him back in the hospital, and back on the stupid psyche drugs.