Thank you for your thorough response! Have you experienced this "spacey" feeling yourself?
Its important to be aware of temporary movements such as akathesia as well as permanent ones such as tardive dyskinesia which I have in severe form. I would strongly reccomend staying on an atypical antipsychotic because they have half the risk of tardive dyskinesia as the typicals and can help on negative symptoms (relating to people) and cognitive sypmtoms which the typicals cannot. And as I learned in a presentation by clinical psychiatrists, people who develop temporary movement disorders in extreme forms are more likely to develop tardive dyskinesia. And Clozaril should not be ruled out as an option and cannot cause tardive conditions but yes it has severe side effects. But there are a new generation of antipsychotics, the glutamate antagonists, in study that cannot cause tardive dyskinesia, weight gain or diabetes and promote a full recovery. I am on glycine which is in Phase II FDA study. My pyschopharmocologist will be publishing my results which have been identified and confirmed by research studies and I will post the links but in the meantime keep track of new medications that are coming out. This is a good link that updates itself:
Keep track on new medications in development and understand that although the work and study is being done by researchers, there are advocates such as myself who are testifying to have glutamate antagonists released so that everyone I can have the mental recovery I did without the debilitating experience of tardive dyskinesia. Read my journal entries for my updates which have been approved by my psychopharmocologist.
I have never experienced Schizoaffective Disorder as a patient, but I manage cases with Schizoaffective Disorder for a Behavioral Health insurance company. It sounds like the symptoms you are most concerned about is the disconnected, "spacey" feeling your daughter is experiencing. The feeling is not uncommon among persons who take antipsychotic medications. Schizoaffective patients usually need to have many medication adjustments to fine-tune their medications to produce the best results possible. It is important that your daughter reschedules a visit with her psychiatrist in order to evaluate what the next step needs to be in order to give your daughter the relief she needs and deserves. She should probably schedule visits with the psychiatrist every two weeks until her medication is adjusted optimally.
I would also encourage your daughter, as well as her support system, to join support groups of persons who have mental illness. Often, counties have centers for persons with mental illness to drop in and enjoy games and socialization with peers. Communitie groups, such as National Alliance of Mental Illness (NAMI) and Depression Bipolar Support Group can provide the individual and her family with education and support that help them make the best possible adjustment to the condition.
To you: When we as parents dream about what we want for our children when they grow up, we never dream about a mental illness condition as being something that might happen. I emphasize with the challenge you face. My son has Schizoaffective Disorder also, and I understand how very difficult it is. I pray that you will have the resources that YOU need to cope. God Bless.
I think you made some good points but its important to remember having a child or young person with a mental illness should not be seen as a tragedy or burden. I know because I personally can testify as to how I recovered from schizoaffective disorder and am coping with severe tardive conditions and am functioning and its not luck or hope or blessings or anything of those things (not to detract from people's spiritual beliefs as I know that can part of some people's recovery) but advocacy and empowerment even though as you can see even though I speak about new medications (as confirmed by psychiatric studies) I'm strongly pro-treatment. In fact I couldn't have recovered without it even the current anti-psychotics that gave me tardive though I am advocating to have them replaced as soon as the new antipsychotics are realized as medications. That's why independent living centers (which as well are in favor of psychiatric treatment) are a good resource. Here is a link to the independent living centers in the United States:
I understand there are hellish moments (I certainly experinced them in the past before recovery) as part of mental illness but when you think of it as a psychiatric disability and push to get integrated into the community, obtain needed benefits and housing and advocate for laws that will benefit people (such as national mental health parity) or better treatment (that will help people recover so that if people obtain the recovery I did schizophrenia can be a thing of the past) then the focus changes. And although that's not always the case it works the other way too. In recovering from schizoaffective I realized my mother had bipolar disorder and her "anger" at me when I didn't do anything wrong even as a kid was an agitated mixed state so that's where I inherited it from (though she has no psychosis) and now she's seeing a therapist and considering seeing a psychiatrist. But with the proper medication I deal with the spasms and pain from the tardive conditions as well as the intermittment episodes of what the researchers are identifying as tardive psychosis better than she does with minor events in her life (which will cause all night insomnia attacks) so its a matter of both treatment (which she needs) and acceptance of her disability (which she's coming to terms with) as well as refocusing life's goals from focusing on "suffering" to advocating for what's needed to end it. Not everyone is ready to approach all this at once but independent living centers can offer advocacy for many practical supports and services as well. Its just another way of looking at things and another option to think about.