Thank you for writing JA with your concern.
This is a common dilema for family members of a person showing a mental condition or brain disorder. I am familiar with this and will discuss a few things with you.
There are no real medical tests to give a definate cause of psychosis. Of course routine labs, etc., done initially to make sure there is no physical problem (like mania with psychosis from hyperthyroidism) But if there is no physical problem like this, then there are no specific medical test that can be done to say, yes this person has schizoaffective disorder or yes this person is severe depression with psychosis, or bipolar in the manic stage with psychosis (these are some of the psychiatric diagnosis that can include psychosis).
Diagnosis is determined by knowledge of the specific guidelines. These guidelines are in the DSM IV revised (diagnostic and statistical manual of psychiatric disorders). The diagnosis is decided upon after getting history, interviewi and observation of the patient. The final diagnosis is given by the Psychiatrist, although Psychiatric Clinical Nurse Specialist (CNS's or NP's) and Psychologist may be involved in interviewing and testing to obtain data to make the final diagnosis.
Medications and therapy or a combination are helpful. In the past 20 years new medications have been created which treat psychosis in a much more efficient way. 20 years ago these meds still caused severe side effects often, such as extreme weight gain. In the last 5 or so years, medications have been developed that do not cause these weight problems.
There are several different medications to use. The doctor will try one usually for about 3 months. Sometimes more than one type of medication is needed, depending on the patient's symptoms. Sometimes we are lucky and the individual does well with the first medication regimen. But it is also fairly common in the beginning of getting a young person on a good regimen to have to try more than one medication. It takes patience, because of yet, there is no way to know which medication will work the best, XXXXX XXXXX 5 choices. Work and research is continually being done to improve this issue.
Once a medication regimen is found, it is important for the patient to follow up with the doctor closely. That way if there are side effects, the doctor can make an adjustment. Sometimes a patient feels so good again with the medication they will quit, this is of course not recommended. In fact, it can be harder to stabilize a person if the have repeated times of going on and off medications - for some reason the medication may not work as well. This is different than medications for other things. These medications are changing the neurochemistry of the brain so they must be continued - and if there is a need to decrease a medication it will be important to do it with the doctors assistance.
There is an organization called NAMI. It was started by family members in similar positions as your family. This organization is well respected, and besides the offering of support for family members of the mentally ill, and the mentally ill themselves, they have even lobbied successfully for things like parity in insurance (meaning that insurance must treat mental illnesses as a biological disease, just like other diseases and pay for treatment equally).
Here is the national web site: http://www.nami.org/Hometemplate.cfm
There are links so that you can find support in any area that you live in. They have numbers to call so that you can find out about resources in each area. For example, commitment laws in that specific state, recommended psychiatrist, etc. They also provide support groups for family as well as the patients. This is helpful for education about what is going on with the individual and learning about disease processes and the best way to help. The web site is one of the best for information about these disorders as well.
As far as what to do with the niece, there are also teen support groups through Nami that would be good for her. But at her age, 15, she will need someone to help her, because basically right now her mother needs to be taken care of.
I hope this helps some. Fell free to ask questions or discuss in a reply.
Are there medical test to determine extend of brain damage? We are being told she is very sick. If she has had this deterioration of the brain for the past 5-7 years, what are the chances that she'll ever be able to live outside of an institution? How long does it take for mediation to start working enough to see results, should the meds be working for her (6 - 8 weeks)?
Sometimes there are changes in the brain, usually very suttle. The cat scan or MRI are the best methods to visualize the brain. There are some changes, usually after many years of mental illness on CT or MRI, but it is really not something that you can use to predict prognosis at this time. If there were severe damage due to other factors, such as drugs - that would be a different story.
But basically, there are no medical test that can tell you what the future will bring. This organization, NAMI, has a section that will explain where we are at this point in studying mental illness. Scientific research was delayed in this area for many years, due to it being a misunderstood area. Much research is now going on in this area, and it is realized that causes can include genetics, viruses, and all sorts of things that we are yet to fully understand.
Without knowing her I can't give you a more specific answer to your questions. This is something that only the doctors and counselors working with her now might be able to talk to you about, but even then, unfortunately these disorders are not fully predictable. Her actual diagnosis, how long she has been ill, what sorts of behaviors was she was and is doing - all these things would only give a bit of a clue as to here future. Saying that, some people get better within a few days, wereas other people take months. I would certainly suspect to see changes in 6-8 weeks, but I can say she will be totally functional like a normal person. This may return or may be a slow return. If she has been ill for several years, she may almost need to relearn certain things such as social skills.
I have two examples of people with chronic psychosis type illnesses to try to help you understand possible courses. Both of these people have support from family members. If they didn't they likely would both be in mental hospitals for the rest of their lives or on the street (or likely dead by now).
I worked with one patient that had bipolar with psychosis. She has had many years of good health. She stopped taking her meds (this woman was in her 50's - but just to give you one example) and regular medications weren't helping her. So a series of ECT (electro consvusive therapy - which is done under sedation and nothing like what is pictured in the media) was done. After it was completed, she was no longer psychotic, but her memory was nearly gone. It took about 3 months and her memory came back and by 6 months after the ECT, she was pretty close to normal. I'm only telling you this because I don't know how severe your sister's situation is, what her actual diagnosis is - there are a wide variety of things that effect prognosis.
Read this article, and it will give you a much better understanding of mental illness, and may relieve you fears.
I would also recommend that you read about genetics, and look in this website for information on siblings, and how having a mentally ill family member effects siblings, and children. There is great information - that can change your life and be very helpful on this web site.
I have a sister with psychosis/schizophrenia - she is doing quite well now, but is not like a normal person exactly, because when she was younger there weren't good medications yet. She was sick for much longer than your sister before she received proper medications when they were developed. Even though, she is stable now as long as she is on her meds,(which are the newer type) and is able to live independently with her husband (same situation) in there own little house. They need help to keep up there social securtiy benefits and to make sure that they can afford there medications and get to their medical appointments.
I hope this helps you to understand different outcomes which are possible.