My daughter has schizoaffective disorder, meds are not working, where do I go from here?

Willa Community Member March 17, 2009
  • I have a daughter with schizo-affective disorder. She is only 20, but has had psychotic symptoms since 9th grade. She spent most of her senior year of HS going in and out of the hospital. She has been on every med and combination thereof, and was mixing and matching herself for a while. I wound up keeping her meds in a lockbox, but she had a hidden stash somewhere. We had several ER visits for overdose of presription drugs.  I tried the direct confrontation approach once, and she called and reported me for verbal child abuse. She is currently living with a couple of friends of mine, and I am no longer an active participant in her life or care. Needless to say this pains me greatly. My friends are giving her a place to stay, but are enabling her to just do nothing all day. It is a sad, mixed up mess, as it is for anyone in this situation. She just spent 5 weeks in the hospital, since her voices are now "commanding" her to hurt people. She is out now, somewhat better, but her psychiatrist is talking ECT which just scares me to death. She went last year to see a specialist at NIMH, who gave her psychiatrist an algorithm for medication. Bless her heart: she has had drooling, has had unbelievable weight fluctuations, acne, tardive dyskinesia, and at one point was lactating. Anyone have any suggestions?

12 Comments
  • Christina Bruni
    Health Guide
    Mar. 18, 2009

    Hello,

     

    I am sorry to hear of your distress and like you, I wish it could be better for your daughter.  As you have found out, the reality is, the medications don't always work for a lot of people.

     

    My suggestion is that you research a good group home where the staff are professionals who are caring and empathetic and also no-nonsense about...

    RHMLucky777

    Read More

    Hello,

     

    I am sorry to hear of your distress and like you, I wish it could be better for your daughter.  As you have found out, the reality is, the medications don't always work for a lot of people.

     

    My suggestion is that you research a good group home where the staff are professionals who are caring and empathetic and also no-nonsense about your duaghter taking her meds.  Key words: research the group home, to get a feel for the ones that are good.

     

    I would not give up hope that down line a new drug will come on the market that could help your daughter.  Because of the loss of brain functioning that appears to happen the longer a person goes without meds, staying on the meds even though they don't give her relief is an option to consider.  Robin Cunningham, an expert here, did not find relief from the positive symptoms of SZ for the 10 years he was on his first medication, but he believes the fact that he stayed on that med prevented further brain deterioration and tissue loss.  At his 10 year mark, his doctor tried the latest drug to come on the market, and Robin's symptoms went away.  The ideal would be immediate symptom relief; however, if that is not possible, please take some comfort in Robin's story.  Your duaghter's doctor should try every drug, and every combination of drugs he thinks may do the trick, and not give up on the search for the drug or combo of drugs that will work.

     

    Lastly, Janet is right: so many people at the Connection site talk about the benefits of ECT.  I can't tell you what to do, only that you ask questions of the doctor about ECT and make an informed decision when you're satisfied your concerns have been addressed.

     

    I would like that your daughter finds relief, really I would.

     

    Regards,

    Christina

    • Willa
      Mar. 19, 2009

      Thank you Christina. I continue to read the site and look into other people's stories. I am trying to find some hope for the future in other people's experiences. Willa

    • Anonymous
      Affective
      Dec. 05, 2013
      I am also the mom of a 20 year old daughter diagnosed with schizoeffective. The biggest problem we face is that there simply are no group homes anymore, at least not in our state. The federal government has shut them down, the state does something called an ACT team which is supposed to assist mentally ill people living in the community but they ate underfunded,...
      RHMLucky777
      Read More
      I am also the mom of a 20 year old daughter diagnosed with schizoeffective. The biggest problem we face is that there simply are no group homes anymore, at least not in our state. The federal government has shut them down, the state does something called an ACT team which is supposed to assist mentally ill people living in the community but they ate underfunded, undereducated and completely ineffectual. So my daughter along with other young people with mental illness either live with their parents who ate living in fear that their child will hurt them or a sibling in the house, the individual lives on their own in a substandard subsidized housing where they pose a danger to themselves and others with absolutely no intervention or monitoring occurring in their living situation (and do not forget the right I refuse any and all medication even when the person is severely psychotic however this alone is not danger enough for hospitilization) or the individuals live in homelessness on the street. This is the reality for adult persons with severe mental illness; wake up, the group homes are gone or only for people with developmental disabilities; this country, this society is failing our severely mentally ill community. Although, I will say, federal funding has been poured into one area that welcomes the mentally ill and houses, feeds and monitored there activity: The prisons. For the record, my daughter is so ill and dangerouse (she fire sets, she has died once already from swallowing a whole bottle of her prescription medicine to make the fear of the demons and voices go away, and she has been hit by a car walking in te middle of the road psychotic and refuses any and all medical treatment because she believe thatthy are doing experiments on her and can see magic in her blood which will make "them" keep her at area 51, she has also prostituted herself and threatens to kill someone and herself, as well as jumping into a cop car she came across while walking down the highway barefoot while the cop was doing were doing a routine traffic stop of a person unrelated to the incident, a bystander o my daughters madness as you would have it). It is so bad I would my right arm for even te possibility of a group home. At this point I pray for perminet institutionalization before she kills herself or someone else. These are tough realities and no one would choose this for their child. But I do not delude myself with the fanciful ideas of the same vein as those who have deconstructive the mental health system to the point where it is harming those it claims to protect. As a realist I know my daughter and anyone she comes in contact with is safer when she is in a monitored controlled setting. Just ask that senator who's son stabbed him then killed himself if he feels the same way.
  • Anonymous
    Anonymous
    Jul. 23, 2009

    i have the same disorder and was not stable on meds.  Phone this company online www.equilib.us.  My psychiatrist told me to try anything and i did. I take these supplements along with a bit of antipsychotic and I have been back to work and functioning as a teacher for 7 years now without any hospitalizations.  It saved my life and my psychiatrist...

    RHMLucky777

    Read More

    i have the same disorder and was not stable on meds.  Phone this company online www.equilib.us.  My psychiatrist told me to try anything and i did. I take these supplements along with a bit of antipsychotic and I have been back to work and functioning as a teacher for 7 years now without any hospitalizations.  It saved my life and my psychiatrist weaned me off all meds to try these and they worked, but i do have to follow a strict diet of no caffeine, no sugar, or fruit, or else i get some symptoms come back for a couple of hours.  Your daughter should not eat those things anyway because they can override all meds.  Keep a food diary to see what foods could be setting it off and elminate foods as you go.

     

    Good luck and please keep an open mind.  These saved my life.

     

    Elizabeth

  • sandra mullen
    Mar. 25, 2009

    MY HEART GOES OUT TO YOU. RIGHT NOW IT IS VERY HEAVY.

    USUALLY THEY DO NOT DIAGNOSE CHILDREN--YOUSAID YOUR DAUGHTER WAS 9.

    ARE YOU SURE SHE HAS THE RIGHT DIAGNOSES? IF THIS WAS ME! I HAVE 25YRS

    EXPERIEENCE WITH MY SON WHO IS 50 NOW BUT CAME DOWN SICK AT 19. I GAVE MY LIFE UP FOR HIM,BASICALLY. MY MARRAIGE BROKE UP. THAT WAS A POSITIVE PART

    FOR ME. I KNEW THIS...

    RHMLucky777

    Read More

    MY HEART GOES OUT TO YOU. RIGHT NOW IT IS VERY HEAVY.

    USUALLY THEY DO NOT DIAGNOSE CHILDREN--YOUSAID YOUR DAUGHTER WAS 9.

    ARE YOU SURE SHE HAS THE RIGHT DIAGNOSES? IF THIS WAS ME! I HAVE 25YRS

    EXPERIEENCE WITH MY SON WHO IS 50 NOW BUT CAME DOWN SICK AT 19. I GAVE MY LIFE UP FOR HIM,BASICALLY. MY MARRAIGE BROKE UP. THAT WAS A POSITIVE PART

    FOR ME. I KNEW THIS ILLNESS WAS BIGGER THEN I COULD HANDLE. I WENT TO SCHOOL AND BECAME A PSYC-SOCIAL REHAB TECH.I HAD TO KNOW WHAT I WAS DEALING WITH. IT IS INPORTANT FOR YOU TO FIND A SUPPORT.I AM SURE YOUR DAUGHTER HAS NOT SIGNED A REALEASE OF INFORMATION AT ANY HOSP.ETC RIGHT?

    SO UNTIL YOU HAVE THAT YOUR HANDS ARE TIED.BUT SHE IS FLIRTING WITH

    DEATH BY MIXING HER

     MEDS. IF YOU CAN FIND A DR. THAT YOU LIKE.BUT IT IS

    SO HARD WHEN YOU HAVE NO COOPERATION. IS SHE IN A MENTAL HEALTH SYSTEM?

    IF YOU ARE AFRAID FOR HER AND SHE IS ACTING OUT YOU COULD HAVE HER

    IEA'D  (INVOLINTARY EMERGENCY ADMITED) IF YOU NEED MORE INFO YOU MAY

    E-MAIL ME SANDRAMULLEN77@YAHOO.COM) YOU NEED SOMEONE WHO WILL

    LISTEN.                                              SINCERELY SANDRA

    PS. A SUPPORT GROUP

  • Donna-1
    Mar. 19, 2009

    Your post has drawn a lot of comments.  After trying many meds, I found that Zyprexa works best for me despite the side effects of drowsiness and weight gain.  Plus I take 2 antidepressants, one antidepressant "booster," and a sleep aid.  My guess is that few with sz or sza find the "perfect" medication or polypharmacy but have to settle for...

    RHMLucky777

    Read More

    Your post has drawn a lot of comments.  After trying many meds, I found that Zyprexa works best for me despite the side effects of drowsiness and weight gain.  Plus I take 2 antidepressants, one antidepressant "booster," and a sleep aid.  My guess is that few with sz or sza find the "perfect" medication or polypharmacy but have to settle for one that offers the best symptom relief.  And like others have said, it is probably better to be on a med that is less than perfect than none at all.

     

    I had 19 ECT treatments for intractable depression in 1996.  I thought at the time that they did me no good.  They may have distracted me from suicidal thoughts long enough to save my life, however.  Nevertheless, ECT profoundly affected my memory of basic things like how to add and subtract, making it impossible to keep my job as an administrative assistant.  And even now I believe it affects my ability to remember oral instructions.  So, yes, maybe it saved my life, but it also made my life a lot harder in other respects.  It will be difficult for you and your daughter to decide whether to authorize ECT.  As with any other treatment, there are those it helps and those it hurts and those who have no response at all.  But I will say that if I become suicidal again, I will consider ECT because my psychiatrist is totally for it.

     

    Best wishes,

    Carolyn

    • Willa
      Mar. 19, 2009

      Hi Carolyn,

       I am glad you have found something that works for you. Your comments about ECT are part of what frightens me about ECT. My daughter states she is not suicidal at this time. She also denies severe depression at this time. She does still have the voices, and visual hallucinations.

       

      Today she was driving to her therapist appt and the voices...

      RHMLucky777

      Read More

      Hi Carolyn,

       I am glad you have found something that works for you. Your comments about ECT are part of what frightens me about ECT. My daughter states she is not suicidal at this time. She also denies severe depression at this time. She does still have the voices, and visual hallucinations.

       

      Today she was driving to her therapist appt and the voices told her to crash her car. She says they took control of her body and she had to fight for control of the car. She says she was swerving and managed to turn around and get to her house. Has this happened to anyone else? It is very scary to me.

       

      Her current regimen includes Clozaril, (with the bi-weekly blood draws) Abilify,and prn Geodon. Also Lithium which has caused her to need Thyroid meds.  She takes other meds as well. 

       

      She has been on seroquel (at one time 800 mg) Zyprexa,Risperdal.... you name it she's been on it and usually at the highest allowable dose.

       

       

  • Pamela Wagner
    Mar. 18, 2009

    I did want to add a comment about ECT. In my opinion and it is just an opinion, I was given ECT more because people had nothing left to do to "control" me rather than because they really had reason to believe it might work. ECT is a treatment largely for intractable depression. I am not sure it works in mania, since they now have very effective drugs for that....

    RHMLucky777

    Read More

    I did want to add a comment about ECT. In my opinion and it is just an opinion, I was given ECT more because people had nothing left to do to "control" me rather than because they really had reason to believe it might work. ECT is a treatment largely for intractable depression. I am not sure it works in mania, since they now have very effective drugs for that. I had 20 sessions of ECT over two different hospitalizations... Once it was effective, but after 5 sessions and they stopped when I asked them to. The second time it was court ordered and against my will, and I do not believe it did anything but make me "compliant" out of fear of having to undergo more. I was NOT depressed, not apathetic or sad or unable to eat or feel pleasure or anything that one would ordinarily identify as intractably depressed. So I would consider the matter very carefully before I permitted them to do this to your daughter, IF you have any say in the matter...But once again, I caution you that this is ONLY my opinion.

  • Pamela Wagner
    Mar. 18, 2009

    Hi Willa,

     

    I have had schizoaffective disorder all of my adult life, and perhaps longer than that  though it was not formally diagnosed until I was 30 (i was early diagnosed merely as depressed and then with an eating disorder). During the past 40 years I too have been on every medication they make and also have taken myself off virtually every one...

    RHMLucky777

    Read More

    Hi Willa,

     

    I have had schizoaffective disorder all of my adult life, and perhaps longer than that  though it was not formally diagnosed until I was 30 (i was early diagnosed merely as depressed and then with an eating disorder). During the past 40 years I too have been on every medication they make and also have taken myself off virtually every one as well, finding something objectionable about each one (I was not, in my opinion, being unreasonable: I wanted a good quality of life and I found the side effects just intolerable, worse in fact than the illness itself, for all that the illness was bad enough for hospitalization more often than not). It was not until I found a doctor in 2000 who was willing to really work with me, and patient enough to put up with my refusing to take so many meds, that we eventually found a regimen of polypharmacy -- 4 drugs that are for the schizoaffective disorder proper and 2 that are psychoactive and essential but are technically for my narcolepsy (though one treats the schizophrenia aspect as well) -- a 4-6 drug combo that put me on the path to a recovery we once thought impossible.

     

    There is definitely hope, and I would not give up, not even on the drugs that are presently in use...a lower dose of several drugs, for me two anti-convulsants plus two atypical weight-neutral antipsychotics plus a beta blocker for the side effect of akathisia worked wonders without devastating side effects. This is despite research saying that this kind of polypharmacy is generally no more effective than a single drug. I believe that in fact it saved the day in my case.

     

    I do agree with Christina that a group home or even halfway house if they still "make them" are essential, that you ought not in fact be enmeshed in your daughter's care; it is probably not good for either of you at this point. And I would research them, make sure that the one you find for her be thoroughly vetted and licensed if that is required in your state, and well-run, as some are not and the residents pay the price.

     

    I do not mean to blow my own horn here, and my first book, a memoir called DIVIDED MINDS: TWIN SISTERS AND THEIR JOURNEY THROUGH SCHIZOPHRENIA, is rather depressing, because I hadn't yet by the end of it really reached recovery, except in the epilogue, my second book, poetry with commentary and intro by my psychiatrist, is much more hopeful and you might find it useful if you are interested in poetry. Certainly the introduction would give you hope. It is called WE MAD CLIMB SHAKY LADDERS. But I just wrote a Sharepost about this so you can find out info about this elsewhere...However, I want you to know that voices, even violent tendencies all can be overcome. Sometimes it takes contracting with the person and her finding reason enough to keep the contract...

     

    Well, I hope this helps. Feel free to contact me if I can tell you anything else.

     

    Pam Wagner

     

     

    • Willa
      Mar. 19, 2009

      hi Pam, Thank you for your comment. I will certainly look for your book, and see if my daughter might like the book of poetry. I am so happy you found a regimen that works for you. That alone gives me some hope. thanks, Willa

  • Janet
    Mar. 17, 2009

    I can sympatize with what you are going through. I was first diagnosed with schizeffective illness at the age of 23. I am now 49. I too have been on a wide array of medications but now am only on 600 milligrams of Seroquel at bedtime. One word about ECT Treatments. I realize those treatments may sound scary to both you and your daughter but for me the treatments...

    RHMLucky777

    Read More

    I can sympatize with what you are going through. I was first diagnosed with schizeffective illness at the age of 23. I am now 49. I too have been on a wide array of medications but now am only on 600 milligrams of Seroquel at bedtime. One word about ECT Treatments. I realize those treatments may sound scary to both you and your daughter but for me the treatments did wonders. I had my first round in 1983 and the next in 1987. I feel the treatments did wonders for me. My advice to you would be to research the treatments throughly and to be upfront and honest on how you feel about these treatments to your daughter's doctor. I know my parents were hesitant at first to allow these treatments to be given to me but they too could see how beneficial the treatments were to me. Only you and your daughter can make the decision but try to be openminded and research the treatments before making your decision.

    • Willa
      Mar. 19, 2009

      Thank you for your kind comment. I am actively researching ECT, and trying to be openminded. I used to work in a post anesthesia unit where they brought patients for monotoring during ECT and it is a scary process. I have serious concerns because of he young age and potential side effects Willa