Home, Diag Forum, About, Contact Us, FAQ

My son just left Home after 5 months of Hospital and Rehabiliation


#41

My son is 32. He was diagnosed at 21. It took us almost 3 years before we found the right medicine combination. In 2008 he started on clozapine…6 months later notable improvements began, not so much up until 6 months, Then by 1 year his speech was pretty normal and the voices were 90% gone. Having the voices gone made him med compliant because his one and only dream back then was to get the voices to stop. Within the second year his speech and comprehension continued to improve and all the voices were gone, he happily reported hearing none. He also started going to AA meetings pretty regularly. Each year since I see subtle improvements…A little more humor, better memory for some things…More cognitive function…More engaging in a conversation…Not every time… But more. He was sane within the first year…But gets even better with each passing year…But I do think having him live with me and keeping the environment low stress…organized and with few responsibilities for him to maintain and participating in activities with him has made all of the difference. We get along really well 99% of the time today and now we can separate and do our own things better than ever before.


#42

I am happy for your and your son. I have been struggling with my son for the last 18 months. He is not complaint on Medicine. Even after long hospotalization ( 10 weeks) last year at Stanford medical Center which is considered one of best Hospital in Northern CA, he wanted to get off the medicine. he was reading all about the side effects on the internet and reject it.
he was given Paliperdone and Lithium at Stanford and some other meds for Anxiety. He is now 24 years of age and I am hoping with time, it will get better.
he is not like to live with me because he does not trust me and thinks that I will force him to be unvoluntarily commited to Hospital when he stops taking his meds.

At present time, he is in Big Sprin Texas State Hospital and being forced to take his medicine, but I feel once he is discharge again and come back to live with me, the cycle will start all over again. I get anxious eveytime he comes back

I live with a roommate who is a phyciologist and he told me that he can help me in handling my son, but my male roommate has his own health challenges. I am not sure if it is going to work with 3 of us sharing the house.

I will have to trust in God that things will get better.


#43

@CAAR2016 > > he is not like to live with me because he does not trust me and thinks that I will force him to be unvoluntarily commited to Hospital when he stops taking his meds >>>>>>Personally I would do exactly that because its the right thing to do…just wanted to add that …

I really do understand, I am sorry you are under so much stress, it is a hard journey from illness to wellness…it can happen…18-24 is the hardest ages…it tends to slightly ease off as they get older and the less severe negative effects tend to take the forefront. Do you have guardianship of your son? I would have never made it as far as I did with my son if I did not take charge of things, and ignored his anger toward me about it.


#44

They’re a psychologist or a physiologist?


#45

I have been trying to get guardianship since December 2015. first time, he was hospitalized for 5 weeks was from December 2015 to January2016 and his doctor was not convinced to write and Affidavit about John disability and to grant me guardianship. After January 2017, He was hospitalized in several more hospitals in California and he would not sign a consent form for me to talk to his team. He signed only once after his was ready to be discharged from Stanford Hospital in August 2016 and he was a lot better came back home to stay with me. Within few weeks of staying with me, he started not taking his meds & left to California again the same cycle started.
Now, his in A hospital in Texas and he has not signed a consent form. As soon as he signed it, I will ask for Guardianship.
You are right. I need to be stronger and ignore him. He called me yesterday from Hospital and cried a lot and told me about the smoke in his head and the bad odor from the AC and people wanted to poisoning him. he accused me of paying the Hospital money to Poisson him. He begged me so many times to come and get him. I told him that I am not in a position to get him. he is 9 hours away and not ready to be discharged and has not signed the Consent form for me to talk to his medical team. but he kept repeating sentences: Please come and get me Thursday, I need to be out of here, I am going to die.
My hear was broken and could not sleep last night.
it is a hard going through these episodes…
But I keep telling myself, I need to be stronger…


#46

Doctor, I believe they are Psychiatrist.


#47

[quote=“CAAR2016, post:45, topic:2696”]
nuary 2017,
[/quote
Catherine, one correction on this timing:
After January 2016, He was hospitalized in several more hospitals in California and he would not sign a consent form for me to talk to his team… :slight_smile:


#48

Doctor, my roommate has a psychologist degree but he is working as a Sales person.


#49

Oh, ok. Then he’s not a psychiatrist if he has a psychologist degree, which would be either a Ph.D or a Psy.D; a psychiatrist would have an M.D. degree. I think it’s interesting that he’s working on sales if he’s a psychiatrist, maybe it would make him more money…?


#50

@CAAR2016 I hope you get some sleep and rest. I am glad your son is somewhere safe right now.


#51

You are doing the best that you can, things can get better, don’t forget to look after yourself along the way…hugs


#52

Thanks for all the reply.
My Son has been now in Hospital for 5 weeks and Wanted to leave. He has been complaining about having strong headache and also about other patients have constant fights and cannot tolerate it anymore. I contacted the social worker and express my concern. She will talk to the doctor and see if they will discharge him within 2 weeks.
I also learned that they have increased the "Paliperidone " dose from 6mg to 9mg. I asked them to go back to prior dose.

he is sounding better but I am still worried that he may stop the medicine again and will go through the same episode.
I am worried.

Any tips on how to handle him after Hospital discharge.


#53

I was like you when my son first went into the hospital. My advice is that if he’s having any type of psychosis is to not advocate for his early release.

My son has a hard time with the fighting and noise too, but he also made some friends in there.

Paliperidone is the same thing you’ll see the rest of us talking about when we mention Invega. Why do you want them to drop the dosage back to 9 mg? I wouldn’t think they’d have raised it to 9 mg if he was responding well to the 6 mg.

I haven’t done this yet, but the ladies in my support group who’ve been through this countless times like to remind me that I have the most power when he’s in the hospital and wants to come home. They say that even if you don’t plan to follow through, you have to tell them that a condition of living with you or having your continued support means they have to take those meds.

I also think it’s critical to have them see someone else other than you very regularly who will reinforce med compliance - it doesn’t matter if it’s peer support, a case manager, a therapist or a psychiatrist. Just someone else who will continue to talk to them about all the reasons they should take their meds. I’m still working on getting that set up for my son.

And, if you’re worried about him being compliant out of the hospital, that medicine does come in an injectable form that he’d only have to get every 28 days. It would hold him for awhile after he gets out, then you have to hope that he continues to get it. That’s what we’re doing - my son doesn’t want to take oral antipsychotics at all. Even this week he agreed he would take them until he got his next shot this coming Monday - promised the doctor and everything. It lasted that day and the next day he didn’t want to take them again.


#54

Slw, this is not the first time in Hospital. he has been in Hospitals for at least 7 times. some of the hospitalization has been short like 7 to 10 days. He stayed the longest at Stanford Medical about 2 months and 1/2.

I noticed from the history of his hospitalization that his headache is happening while he is taking Paliperdine tablet but it can be also caused from other Meds like Lithium or Depako ( mood stablizer)
When he took Zyprexa back between 09/2015 until January 2016, he did not complained about a headache.

he also never took the medicine on consistent basis at home because he has been leaving home whenever I pressure him to take the meds.

Now, when he talks to me on the phone, he is saying that the headache is always caused when he is closed places like hospitals ( refer to it as torture chamber) and also because of all the noise he is hearing from other patients.
he also made couple friends there.

I do not want to advocate for his discharge early but do you really think the headache is “psychosis” related?

The reason they raised it to 9mg because they want to prepare him to have shots only. they gave him an INVEGA SUSTENA 234mg about 3 weeks ago and the shot for march is due on 3/15. The nurse explained to me that they usually increase the dose so he will be ready for taking shots only.
currently, at the hospital he is taking a Shot of NVEGA SUSTENA 234mg Once a month and oral daily pill of 9mg. I am thinking, may the dose is high between both the injection and the pill

He is 9 hours away from me by car and in another state. I am thinking to bring him back to my State and see a Psychiatrist in here and may be switch him to another medicine.
My son keeps on saying that he wants to take “Seroquel”. Is Seroquel is a Good medicine for Schizophrenia?

I know the oral antipsychotic is really hard for me to enforce.

he promised that he will take the meds. He has been crying daily from his headache and he just wants to get out of the hospital.

How long your son has been on Injection? is the injection painful?
how did it take for your son to be Stable after he started taking the injection?

it would be a dream for me if he continues to take the injection monthly.


#55

Slw,
how long did it take for your son to be Stable after he started taking the injection?


#56

It’s been 4 or 5 months & my son is still not stable on the injection.

He came out the hospital with a 234 shot followed by a 156 mg shot and he did great.
Then, they dropped him to the 117 mg maintenance shot & it wasn’t enough.
We’re back up to 156 mg plus pills - and we fight over the pills - so I don’t know.

They tell me it takes longer for some people to get stable on this med, but it’s been a long time now.

The headaches could be a lot of things, but if it was me, I’d leave it in the doctor’s hands as long as you can, especially since he has a history of leaving.


#57

what dose does your son takes for the Paliperidone pill? does he take anything else for mood stabilizer.


#58

The hospital sent him home the first time with 6 mg.

The second time with 12 mg, and that’s what I started him back on last week when the shot gave out.
Today, they gave him a 156 mg shot & told me to drop the pills to 6 mg.
I’m afraid neither will be enough - or that it’s just not going to work at all.

He’s taking Neurontin for a mood stabilizer, but the new doctor we saw today talked like there was something better we could try, but she didn’t want to make a lot of changes today when she just met him in case it kicked off his paranoia about her.

Right now, he’s got the music as loud as it will go in the house - I’m out in our garage - and he’s pacing the front yard. He’s been at it for at least an hour now. Maybe the fresh air & exercise will let him sleep tonight.

I know he’s mad because I gave him his oral meds when we came home.


#59

I know this sounds very basic, but often times people simply don’t drink enough water and become dehydrated, which causes headaches…


#60

That is an excellent point.