Family and Caregiver Schizophrenia Discussion Forum

Daughter is treatment resistant but there is hope


#1

My daughter is still in the hospital and talked with a caseworker/commitment person and was told that my daughter is treatment resistant. I’ve known that for a long time that for the most part that almost all the medications she has taken does not work on her which I’m told is treatment resistant. She takes her meds but nothing changes. She’s been on almost every imaginable medication and sometimes it gets better for a time and then after a time she’s back to square one. The older she gets the more difficult it is to treat her schizophrenia.

A possible scenario is keeping my daughter in the hospital for a good length of time (months) and slowly monitor different medicines to see which ones can help alleviate her suffering. Also, looking into electric shock treatment.

I’m feeling hopeful again that maybe the medical community can help my daughter.


#2

Molly, I do not have good feeling about electric shock treatment.
Hope she gets stable on medicine or monthly shots.


#3

@Molly - just curious if they have tried Clozapine with her?

The electric shock treatments scare me too, although they do wonders for some people.
My son already has memory issues though. Otherwise, I’d be more open to it.

I guess you get to a point where trying anything is better than doing nothing.

I’m glad that she’s in a hospital that’s willing to work with her though, instead of just giving her something new & pushing her back out. I know you all have had a rough time of it.


#4

When will you know if she will be able to do the lengthy hospitalization? I know in my state, the civil commitment you can ask for is 90 days. Surely it must take that long and longer to gets meds sorted out. So sorry her scz is treatment resistant medically. So glad you are feeling hopeful,


#5

There is a treatment that is approved for major depressive disorder that has shown promise for treating schizophrenia as well - it s repetitive transcranial magnetic stimulation, or rTMS. There are a few trials going on at various locations, notably, at Yale. My son’s dad would like my son to try this, but we haven’t brought it up with him. He has no insight, and that is not the kind of treatment that could be forced in any way. He would have to agree to it. If he did, I would be fine with him enrolling in a trial. I have read good things about its outcome.


#6

It sounds like she is getting help; I’m really glad to hear this news.


#7

I know two people that did ect and were very happy with the outcomes


#8

@hope. - not sure when the lengthy hospitalization will take place. I’m trying to take it one day at a time but I do feel certain that it will happen. Her support people, doctors and hospitals have seen how truly sick she is. All I want is for something to work and alleviate and/or lessen her suffering . I’m sure you all understand how awful it is to see someone you love suffer so much year in and year out. I just can’t imagine what it has done to her heart, mind and soul. Sz is such a cruel disease.

But I am finally feeling hopeful – all my advocacy, begging, pleading, pounding on every door with the chance of the mental health community helping my daughter and not giving up on her gives me renewed hope for her future. I often wonder what happens to mentally ill folks who have no one to speak up for them.


#9

@Schnarf5 – I’ve done some reading on etc and my understanding is that its not etc from years ago and have read that for some it does help tremendously and that is what I’m praying for and holding onto.


#10

As for Clozapine – I don’t think that has been tried. I know it’s been discussed. My daughter does have a pacemaker so the doctors are extra careful with her treatment.

“repetitive transcranial magnetic stimulation, or rTMS” Thank you for reminding me I will mention it to her doctors.


#11

They offer it at the doctor’s office my son used to go to. For insurance purposes, I think it’s only approved for major depression, but his doctor wouldn’t have had a problem pushing it through for him.

The old doctor was willing for him to try it, but he would have had to go in for an hour-long treatment, 4 or 5 days a week, for at least a month, and my son wouldn’t have kept up with it. If he had been interested in it instead of me, I’d have at least let him try it - but, he heard how often he’d have to come in & immediately lost interest.


#12

Good work helping your daughter @Molly. We here have witnessed your efforts and heard all that you have done for her. I hope the treatment team knows about your extensive support of your girl.


#13

Since even mentally ill people who have people speaking up for them end up in jails, prisons and morgues. I suspect what happens to those without people speaking up for them, isn’t good.


#14

I know my son’s pdoc’s office also offers it for MDD. I do wonder if, if it was warranted, my son’s pdoc would do what was necessary to get it approved by insurance.


#15

Maybe they could use the code for psychotic depression?

My son’s old doctor had a habit of using whatever was most convenient for the insurance companies at the time. He only talked about symptoms & never slapped my son with a label.

There were good & bad things about that.


#16

The reason I’m talking about electric shock treatment for my daughter is that she can’t take anti-depressants. Her depression is very serious. I know a bit about depression because about 30 years ago I was hospitalized with clinical depression and it’s about the worse condition anyone can go through. Serious depression takes all the joy and willingness to live away. At the time I remember praying to God to give me cancer - at least with cancer my mind would be spared from total helplessness and darkness.