I am Worried, help

Family
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My son is 30 years old and he was back in the hospital about 2 months ago, because he stopped all his medications. He was put on Respidone while in the hospital and it did not work for him, the same with the Invega shot, it was not not working for him either. The social worker called me that they had him on enough medications but they weren’t seeing any progress, my son was in for a month. When my son was calling me from the hospital I can also tell he was not getting better. I asked the social worker if the doctor can please put him on " Haldol ". He has been on it and it has worked for him, my son was also suppose to stay on the Invega shot with a low dosage of the Haldol. My son refused to go back for the Invega shot, he said he had heart palpitations, he felt very nasty on the Invega.

But he stayed on Haldol and his doctor upped the dosage. He is doing well on it, as far as his delusions. But my heart breaks, because he looks like he has no energy at all. He is eating a lot better now then two months ago. I have him on Ensure plus, whenever he wants to drink them and I make him meals in between. He stopped eating all types of meats and is very picky about certain things like pasta, chick peas, shepherds pie with veggies and no meat. He lives on Ensure and cheese tortilini, black bean burgers, string cheese, I also make him a protein shake. I have to work around him and try different things. I haven’t had much luck, because like I said he wants no meat and everything that has no meat he doesn’t like. He doesn’t want to eat fruits, veggies, I tried mashed potatoes he was eating them and not anymore. I am giving him a multi- Vitamins, supplements like vitamin D3 because he doesn’t go outside, I also picked up gluthione. Those are the three he takes and will not take others. I can’t put anything in his protein shake like peanutbutter or fruits he won’t eat it. I think this medication has changed his taste buds.
But he is eating, which 2 months ago he wasn’t.
Is heartbroken to see him sleeping a lot. I cry because I can’t stand to think this is his life. I keep him up talking to him or watch a show he likes, but sometimes he doesn’t feel like talking or watch TV . I am so afraid he may give up on himself. Not that he has said so, but is just something I worry about.

Has anyone have had this problem with a loved one? Is this normal with some of these medications? If so how do you deal with it? I just don’t know what to do anymore. Is there anything to give them energy,? He drinks apple juice and lots of water. Any advise would be helpful.

He was on this medication before, he stopped taking all his medications a year ago and had to go back in the hospital. But what breaks my heart is that now I know why he was taking Vyvanse when he was on these psychotic medications it gives him energy and he can focus. He has tried to play his ps4 and manages to do 10 minutes of it that’s all. His doctor won’t prescribed the Vyvanse anymore because like any ADHD medications is not good for someone with zc.

But what do I do? I mean is either he lives like this or he gets a small dosage of Vyvanse and have some form of life. The Vyvanse is a better version of Ritalin and the other one I can’t think of. It doesn’t have the side affects that the other two have.

I feel like a horrible mother that he has no energy and sleeps most of the times, because of this medication. I just don’t know what to do. :sleepy::sleepy:

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Have you talked to the doctor about your concerns? I know Haldol is a first generation A/P that can be very effective. All A/P meds have side effects but individuals may experience them to more or less degree. It might be that there are adjunct meds that will help with the side effects of Haldol. See what the doctor says and don’t hesitate to ask questions.

Sometimes side effects diminish over time. Ask your doctor or look up information about the drug.

Here is a site that gives an overview of many meds including Haldol. Mental Health Medications | NAMI: National Alliance on Mental Illness There is an increasing trend to use Clozapine when other medications do not work. Many people have found it to work well. It works well for my son. A doctor must be certified to prescribe Clozapine. It takes regular monitoring and reporting to a national database so it is more trouble for the doctor.

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I haven’t spoken to his doctor, because he won’t speak to me. My son doesn’t have me down on his hippa to speak to his doctor. He is afraid of what i say of course. I can only make appointments, pick up paperwork things like that. He did the same at the hospital, because I had no choice, but to call the crisis center and they come out they saw how bad he was so he was, plus asked me questions and I had to say the truth. So he was put in involuntarily. But the good thing that the social spoke to me and kept me posted on everything. But I am going to have to talk to this doctor one way or another.

I heard about Clozapine, lots of patients have had success with it. I would love my son to try it, but he is not medication compliant. He is taking the Haldol, because he doesn’t want to go back in. This is so frustrating, I am sure like a lot of parents on here I feel that my hands tide.

Thank you, for your response. I appreciate it.

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Give it time.
The early days of recovery can be much like that.
It’s not the end of the world if he has no motivation at the moment
I know it’s difficult to watch but if the positive symptoms are under control that is the single most important thing
I remember just reading a bit, mostly lying on the couch in the early days,
Hopefully his recovery will be very long and he will have a huge range of experiences…
Meds are not the main thing doing that
Schizophrenia has a huge impact on the basics, like some won’t wash or etc… but mainly give it time and do what you can to help

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yes, yes, simply learn to not let it bother you, easier with time, buy him one of these:

82046-4-Bronco-intro
82046-4-Bronco-intro1500×896 388 KB

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Is that a toy truck? Buy him a children’s toy?? Hes an adult. This board’s responses are very flippant.

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LOL, it is not a toy, look at the price, LOL, I have over $25K in them and I am 59 years old, I have a couple that will go 100MPH

This one cost $2000

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I am a bit off, what is a flippant? Is that someone with their head up there ass rolling along the floor? LOL, I can see this… I need to make a vid…

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My son takes Haldol and Abilify. Since he added in the Abilify he has more energy and talks more.

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Hey Mysty , My 22 year old son is the same with foods , he is on Abilify 25mg a day . One day he will eat meat or salmon then the next day he says he’s not allowed it and its not good for him . I tried all different shakes with him too and he also refuses them depending on his mood .Every day is a different day so I’ve learned just to listen and see what he believes he is allowed to eat . I give him ideas and send him pictures of yummy foods by txt which helps ! I let him choose what’s good for him on that day . yes its heartbreaking , watching his life pass by without him being productive , not studying , not working , always tired , isolated but then i get some hours of the day where my son ’ comes back ’ and i see my baby boy again laughing with me and playing chess with me . It doesn’t happen often but i try to make sure he comes to visit me at least once a week and spend some time with me . He usually does not stay long and he paces so much around the house but when we play a board game he stays put and enjoys it . Have you checked his Vitamin D ? My sons vitamin D is very low and he takes the gel pills , having said that some days he feels its good for him and some days he doesn’t , just like the food :roll_eyes:

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Thank you Linda, your son sounds like mine, with the food. My son goes through days he likes something next weeks he hates it. I am just happy he does drink protein shakes and I get him Ensure so he can drink in between meals.

I did get him vitamin D, he doesn’t go outside, he is afraid. I have asked him to take a walk with me let’s go to his brothers, they want us to go have dinner but he won’t go. I got him multivitamins, vitamin D and Glutathione I heard is a great antioxidant.

Today we had a good day, he did get up and we cooked his veggie burger together, he does throw out the garbage out for me without me asking him. He has never done that before.

So I take every bit that comes from him. I know a lot is the zc and medications make him tired and sleepy, Is just such a horrible illness. But I take it one day at a time and every good day is a blessing. Thank you, I don’t know what I would do without this group. I have no that understands this illness. I have two sisters, that are so helpful but they both live in N.Y. and I am in Florida.

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Thank you, I feel better. I was getting worried and wasn’t sure if I should have taken him to the hospital to have him checked out. We had a good couple of ours together today. He helped me cook his veggie burger and he does throw out the garbage out without me asking him.

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I have to talk to his doctor to see if something can be added to give him more energy and to get him to get out of the house.

Thank you.

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Hi, my son also does not respond to invega or risperidone. He was just hospitalized and we asked for him to go straight onto haldol (other times he has been in the hospital for 2 or 3 months because the other meds are ineffective.) This is the quickest improvement we have seen. He has schizoaffective disorder, but his psychosis can become very bizarre and long lasting. He takes lithium but it is not enough to hold him together. He only wants haldol as a rescue med. He has previously had invega sustenna, followed by haldol injectable, but he cannot tolerate the long acting injectables. From previous episodes he eventually crashes for a few months, and it takes more than a year for him to fully recover. He also has fluctuating weight, and has been a vegan for a year now, when his psychosis is bad he seems too afraid to eat much. He is thin now.
As your son eats veggie burgers, I will let you know that I treat my son to the impossible veggie burger from Burger King with large fries, he does enjoy this and even though it isn’t the healthiest, at least it gets some calories into him.
Regarding not having access to his psychiatrist, there is nothing stopping you from writing a letter or informing the dr what has been happening, he just can’t share private information with you, you can share it with him though.
My thoughts are with you,
Take care

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Caring mom, I just can’t believe how much your son sounds like mine. My son is just like yours, with medications not working, he has been in and out of the hospital, because of the same reasons as your son. Haldol was the only medication I saw improvement. Is ok to give them what they want to eat, is a lot better then not eating at all. When my son was ill he was scarily thin, he won’t eat or sleep during his phychosis. But now he is being picky but I give him what he wants to eat. He looks better. Arrr we need lots of patience and love for them. That’s why we are here, I am just so thankful I found this group or I would be crying everyday. But this group have given me strength knowing I can relate to others and I am not alone. Thank you for your response.

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BTW, I have paper work here that I will be giving to his doctor. I don’t want the doctor to give me information, I just want the doctor to have my son’s medical records so he can be aware of what’s going on with my son.

Take care, stay safe.

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Oh yes, my son doesn’t eat, sleep or drink when in deep psychosis, he doesn’t feel he needs to. I hope your son feels better soon with the haldol. I have a second son also taking haldol and lithium (I don’t know why I have two with schizoaffective disorder). He wants off the haldol so I am going to have to get him on another AP, sigh…

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HIPAA does NOT prevent you from talking with the doctor or medical staff. It only prevents them from giving you information if a release has not been signed. And even then, if talking with the family is in the person’s best interest, they are supposed to include the family. Unfortunately, some doctors take the most conservative actions in fear of getting sued. Doctors are busy, however, so if the SW is your avenue to information, that can be a good thing. Some doctors and counselors will let you email them. The process to work towards a person being med-compliant when they don’t see themselves as being sick is the hardest part of this journey, I think. However, it can be done. Learn all you can. NAMI has a great program called Family to Family which includes a class on Communications (how to communicate with our loved ones effectively). And the book “I Am Not Sick; I Don’t Need Help” is the go-to for how to talk to our loved ones with anosognosia with a goal of getting them to accept treatment. Another way to work toward med-compliance is to establish boundaries and incentives (such as your son is currently taking med in order to stay out of hospital). Some, including me, have had to say that our loved one could not come home (from the hospital) because we knew from experience that they would not get better and we’d just repeat the cycle of decline. In that case, a group home setting if that option is available can help a person become med compliant.

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  1. you’re not a horrible mother.
    Medication affects everyone differently and it is a constant battle of experimentation. This one will work for a while and then the dose needs to be adjusted or it stops working so then another one is given and needs to be adjusted…it’s never ending but not your fault.
    My suggestion would be, as his mother, ensure he is getting a strong dose of vitamins-high doses. Especially fishoils and B’s and D’s. This will help de-calcify the brain which will give him more peace and energy. Make sure he eats at least one full meal a day. For my husband he would not eat or drink enough water to help the medication work. This was a difficult habit to build. From what you have said, you are already on top of his nutritional experience. Ensure is so great…and yummy! It is also easy to make a smoothie using this and some frozen fruit and a banana-if he likes those.

Try not to let his inactivity or tiredness get you down…it is medication…and it takes medications usually 2-3 weeks to fully be working as they are supposed to. After this time has passed and if things are still bad then the medication dose or type needs to be changed…which takes another chunk of time because some medications are in the system much longer than others. Keeping the vitamin dose HIGH, helps keep the system clean and operating healthily.
:slight_smile: Hope it helps…

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HIPAA does NOT prevent you from speaking to the doctor or medical team or from giving them information. Do NOT let them try to tell you that. They may not give you information about your son without a signed HIPAA form, but legally, they are SUPPOSED to do what is in the best interest of the patient which could include talking to you. I have often emailed a doctor or counselor without necessarily expecting a response, but the information is helpful to the decisions they make. I realize this is not always possible…Here are your rights:.…https://www.nami.org/about-nami/nami-news/2014/understanding-what-hipaa-means-for-mental-illness