They are 19 and 21, they both went down within 5 months of each other, the younger one first, it was totally unexpected …
Wow that’s tough caringmom , I hope you look after yourself too.
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My daughter is on the smaller dose of 50 mg and it has been doing okay for her. At first she was drowsy so they told her she could split her pill. So really she is doing 25 mg. It is still keeping her voices quiet. They did up her buspar recently.
Is this 50mg pill of haldol ?
My son has the depot , now up to 150mg monthly, not sure what equivalent dose is .
@Jane57, there’s just so much fluctuation in symptoms from day to day or week to week. This is why it’s so hard for us to figure out what to do about raising or lowering med dosages.
We want him to be at the “lowest effective dose”, but there doesn’t seem to be one (a dosage) that works with consistency. It’s up and down, and it’s especially down for the week after he gets his injection.
Clearly I’m not expecting my son to go back to even remotely close to who he was or who he was supposed to be. I just want him to have some quality of life, without constant fear.
I think Haldol injections might be a good next trial, since my son refused Clozapine. Maybe there’s something slightly different about a first generation AP that works better for him than a second generation AP.
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Yeah that would be the 50mg haldol pill
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I got goose bumps reading your paragraph @Day-by-Day , I am so sorry that even with injections your son is not functional. The laughter and songs sounds so great though. I’m happy you have good days with him.
My daughter still doesn’t laugh much, I keep a message from her where she was laughing on my phone, and keep resaving it, so I can hear her laughter when I want to. I did feel like I won the lottery and was blessed when the Haldol Dec shot worked for her and she stayed on it, breaking the psychosis and giving back function. I wish everyone fighting this disease could see good results.
I wanted to cry @caringmom thinking of you as you watched SMI hit both of your sons within months. What a struggle. I truly hope the doctors can solve the destabilizing for them and give you some peace.
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Sounds like you are talking about my life. Since your son is on order to take medicine. does he,??
Yes he does and in some ways we are lucky that he has had the community treatment order as he hasn’t defaulted in three years almost since he got out hospital.
How’s things with you ?
My heart goes out to everyone on this forum. My son is also on a comunity treatment order since he was in the hospital in December. He’s on 100mg invega sustenna every 28 days. The dr. Is going to lower the injection then maybe get him on every 3 months. Every day my son keeps telling me that the needle is poison and their experimenting on him. He used to be fit and felt good and could do things but now he has a big stomach and the only thing he can domis lye in bed. He’s like a broken record every day when I try to talk to him he just gets angry. There is so much frustration it’s like beating your head against the wall.
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Hi Jane! I’m glad you got the dose increased. My son is taking a dose of 156 Invega Sustenna every four weeks. He also takes 1.5 mg of Paliperidone as needed (same type of drug but oral), and he’s been taking it daily. But is your son on any mood stabilizers? My son takes 1250 mg a day of Depakote ER. It helps a lot with the mood. He sees his doc tomorrow and he will probably go up another 250 mg a day. They do have to test their blood once in a while when they’re on that though, at least at first. They can tell if their levels are low by the blood test. If your son hasn’t taken a mood stabilizer it might be worth asking about. Hope he is doing better!
Margi, I totally understand how you feel, it’s draining and you summed that up perfect, it’s like banging your head on a brick wall.
There is the frustration you feel, then obviously I can hear the sadness in your post.
Hoping maybe a three month injection works for your son.
Hi JulieAnn
Your son seems quite stable then on his combination ?
Mine is starting a low dose of fluoxetine (Prozac) on fri this week . We will see how this goes.
When our family was in crisis, it wore me down emotionally, financially and physically. I was waking up in fear several times a night as the psychosis was usually worse at night. Now, after 6 months of peace, I still feel awful physically and am just recovering to a stable place mentally myself. The worry, terror, depression etc is slowly leaving my life. However, the littlest sounds in the night still startle me awake, or if I am already awake, still make me jump. My daughter’s haldol dec shot is the only medicine she needs. Yes, she is staying in bed most of her off time from work, but otherwise participates in life to work, shop, and take occasional walks. She just asked for tools and paint to start painting the exterior of our home. She’s asked before, and I’ve bought them before, but she never really does the work. I will buy them again. (I think she throws away the stuff but I don’t know for sure).
I wholeheartedly believe that life with her on medication is 1000 times better than the unmedicated years. It makes my heart hurt to hear on this board of loved ones who refuse to stay medicated.
@Margi I hope you can win this struggle emotionally with your son’s illness. It is so very hard. It took 3 months of shots before my daughter wanted to participate in life by getting a part time job. She rarely buys anything, she is just working, keeping the money in the bank and staying in bed, mostly. So far from her old life, but way way better than 24/7 psychosis.
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I totally get how you felt it’s like PTSD for us.
When my son was at his worse I used to almost
Miss a heartbeat when I would hear him come down stairs to rant or when the phone would ring , or the window was knocked , we tried to get him to accept help but he was so resistant so we had to make him leave .
I feel the same as you , he’s not working and spends up to 16 hrs in bed /his room but that’s better than he was unmedicated , just wish he would recognise that.
Your daughter is doing great and for that I am sure that in time you will feel better gradually too.
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Hi Jane. My son is probably as stable as he’s going to get as far as psychosis. He still hears faint voices at times but the doc said some of that never goes away for some people. So he seems pretty stable but still has some mood issues. Up and down quite a bit. Not terribly but enough that it really affects me and he’s hard to live with. Life is definitely hard here and it’s not what we expected to be dealing with as we head into retirement. Hope your son starts to improve! ~hugs~
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@JulieAnn, your description of how things look at your house makes me think that maybe I need to just settle in for the long haul, and take more seriously the way this illness works for many stuck with it.
For the less fortunate, this illness cycles from good days and weeks to really bad days and weeks, even with good meds. For some, there never really will be anything that resembles “recovery”, in the way we read and hear about. For some, we just have to keep them safe, under our care, so they can have some minimal quality of life.
It is what it is? Is this what “acceptance” is? You don’t have to answer that question. I’m just forever searching to understand what it means to “accept” what has happened to my son.
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My son was diagnosed 3 years ago and we’re still trying to figure things out. I can’t quite figure out if he’s ever going to be able to live really on his own and be okay or if he’ll always be dependent on someone to help. I know what you mean by acceptance. I was just talking to my husband about that. I feel if I accept this/him how he is then I’m not looking for ways to improve things and help him grow more independent. Accepting would mean just accepting that this is good enough. I probably have a warped sense of acceptance. I’m finally going to a Family to Family 12 week NAMI class as soon as they can fit me in. Need to learn more both for his sake and mine. Hang in there…
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I allow myself to be sad sometimes about the limitations this illness has placed on my son. I can see progress only when I take a long view and look back to how things were 3 years, 5 years, 7 years ago.
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