Family and Caregiver Schizophrenia Discussion Forum

Plz Help Advice Needed - Treatments not working


#1

My sister had been diagnosed with schizophrenia and nothing seems to be working. We’ve tried many medications as well as therapy. Therapy never goes well because she doesn’t seem to be able to speak. She is 19 years old.

The episodes started 2 years ago and only seemed to last for a month or 2 originally, but now it’s been 6 months of a very bad state. Majority of her day is spent with her eyes closed almost in a sleep/fainted state, and when she awakens she mumbles something that I’m unsure of what she says. She’s the most innocent girl one could ever meet, and has always out other first before her.

A couple times she’s said that she goes off to another place when she faints/passes out. Her body is very rigid when this happens and it takes awhile for her to actually awaken. Once she does she’s quite and says very little.

She doesn’t recognize anyone in my family, says we are not her family. Please help, any advice works I want to do anything and everything to help my sister she means the world to me


#2

Perhaps its related to a side effect of meds (if shes taking any)
Many hospitals have an on call nurse that can also offer assistance.
If she is currently under the care of a doctor contact them and describe what you are seeing.
If you feel shes is in imminent danger don’t hesitate to call 911.
I know how it feels to see a loved one go through this. Hang in there.


#3

Are you close to any major university medical schools? (e.g. UCLA, Columbia University Medical school in NY city, etc.). These are usually the best place to get treatment for harder cases like your sisters. I recommend you also contact the early psychosis treatment centers close to you to see if they will accept your sister or can suggest other good places close to you:

Generally the best treatment for your sister’s type of case (called “Treatment Resistant Schizophrenia” is Clozapine. Have you tried it?

Here is more information:

and

and

and

and here are some more resources to read up on to get the best treatment for your sister:

and

http://www.currentpsychiatry.com/the-publication/past-issue-single-view/treatment-resistant-schizophrenia-what-can-we-do-about-it/52ba3a8f7626aab986d15c8af7f43015.html

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#4

I’m sorry your family is going through this.

Has your sister had differential diagnosis like blood tests, EEG, maybe MRI? To make sure nothing else is going on that complicates the MI diagnosis?


#5

MRI and other tests came up clear. CLOZAPIN DID NOT WORK WELL HER AT ALL. Made things worse actually. Most treatment centers won’t accept her in the state she’s in unfortunately. I have started looking into the major university programs. I just wanna help her so bad, I’d give up my health and well being any day just to see her back to the loving innocent sister she was :frowning:


#6

I’m not a doctor but it sounds catatonia, which is not at all unusual in schizophrenia and can be quickly treated with the right anti-psychotics. You need to get her to a psychiatrist and probably ask about a depot injection for her so she can’t avoid or forget to take her medication.


#7

My mother ensures she’s taken her medication everyday. They’ve looked into Catatonic but the meds related to it arent working


#8

My daughter had these symptoms when she was 19 and 20. That was also when she got diagnosed with schizophrenia. She had these symptoms off and on for about a year. It was such a difficult time because when she was not catatonic she was very childlike and would leave the house and walk away. We’d have to drive to find her. My husband slept near the door to keep her in the house. I don’t remember if she was ever medicated for catatonia specifically, but after about a year she no longer had catatonic behaviors. That was 8 years ago. Unfortunately it has not had a happy ending, yet. She just got out of the hospital today. She has been committed over 30 times in 8 years. They have increased her meds and she feels better, but she is also an addict. It is really hard when she has a dual diagnosis. I have a little more hope again. I wish you the best.


#9

If it helps at all to know, you are definitely not alone. My son has Disorganized Schizophrenia, which is more rarely seen than some but it made it almost impossible for him to communicate effectively for a number of years until we found the right treatment. Not only does it affect how they speak which is often difficult to make sense of but it also makes what you say to them difficult for them to interpret, even though you are speaking plainly. If I could offer any advice it would be to not give up on her, and find a doctor willing to think outside the box when it comes to treating your sister. For my son it took going through dozens of “new” medications and several doctors before one of them decided to go with an old school drug called Clozaril, (generic is clozapine) it does require the patient to be on the Clozaril registry and requires monthly blood draws to make sure there are no negative affects with the patient’s white blood cell count, but within 6 months of being on it his speech began to improve remarkably and within a year the auditory hallucinations were hardly noticeable to him. He has been on it for 5 years now and all of his monthly labs have come back good, and he is doing very well compared to how he started out. I feel grateful and hopeful. Not all patients react the same to every treatment, but all patients need a strong and determined advocate. I wish you and your sister success in your search for mental health solutions.:tulip: