No right answer


#1

So sad when I have to drop my son off @ his apt after spending time together. I pray everyday that one day he will be well and stable enough to live with me again. All I want is to be able to take care of him. It’s heart wrenching to love someone so much, but at the same time be afraid of them. It really messes up your mind. We become mentally ill by taking care of our loved ones who are mentally ill.

My thoughts are filled with happier times past of my funny, sarcastic, athletic boy. I would give anything to see him like that again.

But I will take stability and peace and not having to see my son in the middle of his psychotic episodes. All I want for him is to feel peace and calm again.


#2

Hi, mbheart. it’s true as a parents, we want our kids to best healthy and live good life. But I don’t think they are mentally ill. they are mentally unhealthy and it gets worse when we put them on psychiatric medication for most of them. So, I would recommend you to read the book " Anatomy of Epidemic" by Whitaker. That book changed my thoughts a lot. Secondly, visit "Surviving Antidepressant " website. you will learn a lot to help your son.
take care. ’


#3

Hi Tyson, thank you. I do agree with you on most of these anti psychotic drugs. I witnessed first hand some of the horrific side affects of these drugs. It was like poison to my son’s system. His body rejected most of them and it seemed the side affects were worse than the state of mind he was in prior to him taking these drugs. No wonder so many are non-compliant to meds, my god, look @ the side affects. And heaven help you if you ever try to go cold turkey or just lower the dosage on your own. It could be catastrophic.

It killed me as his mother to see him get injections, and take all sorts of pills. I really just wanted to die. He is, after all, my baby.

It scares me how many people on this forum speak of differents types of meds & injections and in such high doses, as if drugging them up is the norm. Clozapine seems to be a common one on here. My sons doctor said that he would never use that on anyone, and he also said it was his “absolute last resort”. That scared me. Thankfully my son is not on that. I don’t want to say what he is on, but it’s the lowest dosage of an anti-anxiety medicine, and so far, it’s helping him sleep and he is doing well. That is the ONLY thing he’s on at this time. And thankfully the lowest dosage.

I’m praying this is it for him, but I do worry everyday about another episode or his psychosis returning. If it’s severe, he usually ends up in the hospital, where he will be treated as a lab specimen and be subjected to a slew of pills of all shapes, sizes, and colors. I can’t even think about it without feeling sick!

Our poor kids, all this poison being poured into their innocent bodies, some taking them for years! How sad!!

I’m sure most feel there is no other recourse, but after witnessing my son on some of these awful drugs, so grateful he did not have to escalate to the most strong & powerful drug. I would not be able to handle watching him suffer thru the side effects. Haldol was one of them. It was a nightmare.

I will check out the book you referenced, and I will visit the website as well.

Thank you for the correction. You’re absolutely right, our children are mentally “unhealthy”, but they are still perfect.

Take care


#4

Its too bad so many doctors are afraid of clozapine. I think the reason it was tried on my son is that one of his Pdoc’s partners was covering for him when my son was in the hospital, and he was NOT afraid to try it. And it has made such a positive difference in my son’s life.

It is the ONLY medication he is on, at a lowest effective dose for him. He gets blood drawn every month to check for potential harmful side effects, but his results have always been fine.

I don’t think it is commonly used. I do think other APs are tried first. I think many of the people here have family members who are more treatment resistant, so are more likely to need clozapine.


#5

I’m GLAD my Sons doctor was hesitant. It told me he truly cared, and if my son could be on something less strong & severe and have it Work for him, why not go the lesser of the 2 evils.

I tend to not trust doctors who wants you to try everything under the sun. I do feel they have a vested interest in doing that.

We are not a pill taking family. None of us ever were. We are old school, I was brought up this way by my parents. I’m not one to just pop a pill for everything.

Have you read the side effects of some of these AP drugs?? My god!!!

Glad it’s working for your son, if that’s what was needed.

It’s a difficult decision either way


#6

The effectiveness of cyproheptadine hydrochloride in treatment resistant chronic schizophrenic patients, 13 male patients (ages 35 to 66 yr), in open, unblinded trial, received cyproheptadine hydrochloride 8 mg/day po, with adjustments to 8 and 12 mg/day monthly intervals over 3 to 6 mo. Seven (54%) of the 13 patients had improvements on cyproheptadine hydrochloride, with 4 these patients remaining on cyproheptadine hydrochloride for over a yr with continued improvement. Seven (54%) also noted calming effects and improvements in sleep. It was concluded that c yproheptadine hydrochloride can be beneficial with regard to improved calmness and sleep, to mood and energy levels and to e negative and even positive psychotic symptoms in a subgroup chronic schizophrenics nonresponsive to other therapies.
[Bacher NM, et al; J Clin Psychopharmacol 14 (6): 424-25 (1994)] PEER REVIEWED PubMed Abstract

Cyproheptadine is an older antihistamine that can be purchased over the counter in many countries. It is an antagonist of many of the same receptors(serotonin and histamine) that clozapine antagonizes. It does not have the negative side effects that the antipsychotics have.


#7

No doctor is likely to try clozapine as the first option. It was after failures with other APs that it is tried.

Of course I am aware of the many side effects. Then again, lately every commercial for every medication these days spends half the time listing possible side effects.

As you say, its a difficult decision.


#8

I really agree with you on this one Vallpen. I think we do see a higher percentage of the families of the treatment resistant population in addition to a higher percentage of the families with unmedicated (or, we could say, not yet medicated) family members. A lot of people show up here when other options have not worked and they are looking for support and suggestions to help get their family members on meds.

Clozapine is a tricky med, the required blood tests really make it a complicated prescription. My knowledgeable friend was explaining to me the procedures from when her son was on it.
He did have tremendous results, but was one of those that had tried everything else first. Her son could have a life on clozapine. He didn’t have a life before it.

Related to meds with bad side effects, but unrelated to scz - about 6 months after my older son’s kidney transplant - he looked terrible, really, really, death warmed over terrible. We would visit him once a month post transplant to “eyeball” him. After this visit we were alarmed. I called his doctor’s office and they called him in to look him over and they were shocked at his appearance. His kidney function numbers were all fine, but his appearance! Son then calls us to tell us they have emergency scheduled him to see an oncologist who is in the process of taking bone marrow out of his hip. The FIRST thing they wanted to eliminate was the possibility of cancer - turns out one of his immunosuppressives has caused cancer in some people 6 months post transplant. (turned out he was actually suffering from poisoning from being overmedicated - hence the frightening color of his skin)

My son with scz responded extremely well to Geodon - the only med he has really tried. He said the involuntary arm movements freaked him out. I did not see the arm movements, but he did call me in a panic telling me about them and would not take the med again.

His hands have severe tremors from his immunosuppressives, especially right after he has taken them.

My perspective is possibly unique, due to our kidney situation, but, personally, I am way okay with side effects. I know that Jeb before meds would be as well- if he could have control of his mind back, before scz Jeb would take them in a heartbeat.

There was a time when I worried and worried about whether or not meds were the right way to go. As Jeb has worsened, its been much easier to come to a conclusion.


#9

Hi Hope, yes we have to pick the lesser of the 2 evils. As you stated, I think Clozapine is looked upon as the last “go to drug”, after everything else has been exhausted, and hopefully it does the trick.

For me, I actually did witness a lot of the horrible side affects, including the leg twitching ( he paced all nite), the rapid heart palpitations, agitation, etc all brought on by Haldol. He could not settle down, it was as if he was in an episode along with that scary look in his eyes.
It was the monthly shot. It was hard to see him like that.

Our best hope is to find something that will improve their quality of life, on the lowest possible dosage, and they are accepting of it, and don’t mind it, so they take it willingly without a battle.

There are so many difficulties with this illness…


#10

You are so right mbheart, there are so many difficulties with scz. Since they are our children, even when they are adults, we feel for them so much, the side effects are so very hard for us to see.


#11

That’s right Tyson!!!
Open dialogue therapy
Very good results from Finland treating psychosis!


#12

I am hopeful that despite there being no ONE right answer for all, that SOME right answers can still be found. Quality of life can be measured on a sliding scale upwards and downwards: any improvement is welcome and should be strengthened while anything that lessens quality should be eliminated if possible. Idease from this site help my overall household quality of life. Maybe someday I won’t need support from everyone here as much, but I am being kept afloat emotionally by visiting here often.


#13

Same here @oldladyblue.
This site is my go to for support & understanding
Hugs & love to all :purple_heart:


#14

Same here! Every thing you are saying is what I think too. Sending hugs :hugs:


#15

You said that perfectly. Caring for someone who may never be well does create an almost PTSD like condition. My SA son lives on his own now but just lost a job so I’m bailing him out financially. I don’t mind but can’t continue to do so. I fear also he is abusing drugs although he keeps it hidden well.
Now my daughter has asked to go to see therapist for her severe anxiety and I gladly take her but even going in the office brings back bad memories of my son struggling all through high school.
I just wanted one “normal” child which I mean no judgement by. I just don’t know if I’m strong enough to help two mentally I’ll children.


#16

When my sons were both diagnosed with a kidney disease that would result in ESRD, (End Stage Renal Disease) -luckily we were able to be living donors for them when they were in their twenties - I think that it was both of them was what made it so difficult for me. Other moms with children in kidney failure would want to empathize - but they all had a child without kidney disease in addition to their child with ESRD. For me it was both - all- of my children, I felt no one could possibly understand my pain. I was in deep despair for 18 months - had to come to an immediate stop at that point because my older son went into actual failure. The real mom in me stepped up and dropped all the sorrow and despair crap to get busy finding out about living donor transplants.

My older son has autism, higher functioning than most on the Asperger’s end of the spectrum. We felt quite successful as parents and so proud of him when he became self supporting. Of course then the kidney thing slammed into our lives and toppled me over.

Schizophrenia pretty much tried to topple me again when it showed up. There is something to tough times making a person stronger. Each time it tried to knock me to my knees, I got back up. Once you’ve been to hell and back, you do learn the terrain.

WTF was my mantra/battle cry for quite a while though. (Sorry folks, it’s reality)


#17

Thank you for sharing your personal story. You sound like an amazing family.
Wishing you all the best!


#18

clozapine was something I too was terrified of as a parent. It did save my son’s life I believe however after 2 suicide attempts. Each person is different. I wish there were safer meds, but I feel strongly most schizophrenic people need them to survive. They should be kept at as low a dose as possible.
My son lives independently and works since starting clozapine 4 years ago.
No other med helped him for more than a few months.
No one should feel bad about using medication if needed, it would be naïve not to do so in my opinion.


#19

You are so right, and our situation is so similar to yours. Our 34 year old son has been on his own, supervised and aided by a treatment team, since he was about 20. My wife and I have never wavered from this plan despite the heartache that comes with it. The time will come when we are not going to be there for him and he realizes the need to be able to live independently. He has learned to look after an apartment (it’s a mess), bank, do laundry, sometimes work, deal with his medical people by himself, cook and a lot of other things. So right now mbheart you are doing the very best, right thing. Hang tough, and good luck.


#20

I feel like the time is going to come when he may need the absolute strongest drug (clozapine). But for now, I’m grateful 10 mg of Zyprexa is doing the trick and he seems so much calmer and coherent and is engaging in conversation with his family. He was diagnosed @ 19, did very well for 4 years on Risperdal, with no major incident. Then he decided he was “well enough” to stop on his own. That’s when all hell broke loose. In and out of the hospital 3 times in the last 4 months. His psychosis lasted all summer. He was finally tamed on Zyprexa. And he has also admitted he was “not right” and has agreed to continue his outpatient treatment and take his meds. This is a huge stepping stone for us, he never ever admitted anything was wrong.

I’m praying so hard everyday he will not have to escalate to injections/end of the rope AP drugs.