Schizophrenia in the family

[swimmer]

I agree with the tactic of waiting and remembering that it is above all your sister's decision. So glad to read that your mother is regretting her behavior.

My BIL is schizophrenic. He was a very good student in HS (perhaps smoked too much pot) but went to college and was on a varsity athletic team his junior year and doing well academically when everything fell apart. He is good on meds, not OK at all off of them and has tried repeatedly to hurt himself. It is simply tragic. I just want to clarify what genetic counseling means when there is a question about schizophrenia. There is not much that they can do. A counselor can do blood tests for Huntingtons or Cystic Fybrosis, but for schizophrenia they can only ask you how many people were diagnosed as schizophrenic and make some calculations. They cannot explain if those relatives had various triggers that led to schizophrenia, they cannot calculate the future stressors or lack thereof that hypothetical future children will encounter. There is not a blood test.

There is no way of predicting which zygote will not develop schizophrenia. None. Not yet and probably not ever with any high degree of reliability. There are environmental triggers that are only dimly understood (drug abuse, physical trauma or abuse seem to be leading triggers but are not necessarily causal). In fact, 63% of people who develop schizophrenia have no relatives with schizophrenia. With stats like this it is remarkable that anyone on earth chooses to reproduce! Of course, anyone reading this under the age of 28 has around a 1% chance of developing schizophrenia.

Because of my BIL's schizophrenia the chances that our baby will develop it is double the normal chances, so from 1% to 2%. This was a risk we were willing to take. Everyone has a risk threshold beyond which they will not go (for example we also did not have an amniocentesis because we weren't going to act upon any information that we received), so everyone has to determine their own threshold of risk and that includes of course your sister. Schizophrenic's brains do look radically different (pet scans, fmri) but that isn't even a great tool if for example one wanted to know if one's future spouse was going to develop this horrific condition. This is because some non-schizophrenic brains look schizophrenic. Ultimately people choose not to have kids who might have had kids with no issues or they might get killed by a car at a young age. Chance is a beyt@h and we all have to find the best peace that we can in an increasingly tumultuous world.

Soooooo, good luck to your sister's beau, his family life must have been rough and to open up to the woman he loves must have been super hard. I hope that your sis and father get over the way in which he chose to reveal that information, sounds like she might have already. Call her, sounds like you are a loving and caring sis. Hugs to all.

 

[Arkteia]

Once, shortly after my psychiatric residency, I was walking down a long hallway in a psychiatric hospital at which I was moonlighting. The patients' rooms were on one side, and the nurses' station was on the other. Both nurses on call that day had severe bipolar disorder - they were very open about it. The question that puzzled me was, "how come two people with severe bipolar disorder are high achievers, nurses, working at a nice place, being best nurses in the hospital - and they both had a rocky past - and some people are in and out of the same hospital, on the other side of this hallway?" The answer, of course, is very complicated, but the first thing that came to my mind was, "both nurses take their medications, regularly, every day".

We do not know the life story of your sister boyfriend's mother. If she took her medications between hospitalizations, how early the illness started, if she currently med-compliant. Why she is so low-functioning.

Re. schizophrenia. "Pure" schizophrenia is rather uncommon, and most schizophrenics are not violent at all - in fact, they are the opposite, very scared, mostly sitting in their houses (although I have seen violent schizophrenics, but more as an exception to the rule...). There are many cases of so-called "schizoaffective disorder", with mixed symptoms of psychosis and bipolar disorder. Then, there is also bipolar disorder with occasional psychotic features... So diagnosis is not easy, the symptoms overlap, and different doctors diagnose in a different fashion. It makes the whole problem more complicated. So a geneticist may not help much, especially since no genetic testing is currently available. Like may of my colleagues, I think these are polygenic illnesses, with different genetic types and patterns of inheritance.

If you start telling your sister how serious the situation is, and she loves the boy and wants to get married, your words may have a totally opposite effect. How does the boy come across? You said he was nice; she may become protective of him and their feelings and marry him "just in spite".

If I were in your shoes (and we all may be!), I'd arrange a consultation with a psychiatrist, but make the mother the reason for the consultation. My son was dating a girl whose mother was bipolar. I never saw the mother, and from what I know, it was a milder case, but if the situation were as scary as it sounds in your case, I'd say to him, you know, you first saw her mother, you do not know much about mental illness, would you and your girlfriend be interested in meeting with a specialist, since you are going to be the member of the family and your girlfriend is so much concerned about her mother, and you want to support her, right? And know what to do if the mother has an exacerbation. I'd recommend them to see a good psychiatrist, who will answer all the questions, look at the girl and talk to her, and do all what is necessary. And recommend them good books to read. (Your sister's BF was not showing her the mother for a long time, for fear of stigma, and he is shy, no need to make him feel more scared that he is now scrutinized by the family).

As to having children... this question should not even emerge. Everyone has the same right to have kids, and if the kids start developing symptoms, they have parents who will recognize the symptoms and bring the kid to a doctor sooner. If there is a "miracle" drug that helps several family members, there is a high chance that this very drug will help the kid as well.

The children of parents with mental illness will live in a different world. The science is developing, and one day gene therapy will be available. So far we have it for limited number of conditions (e.g. cystic fibrosis), but things will improve

Your sister is lucky in one respect - her BF told her. My friend, unhappy in her first marriage, met an incredibly handsome man, an artist, and married him in a few days. Love at first sight. He "forgot" to tell her about his own mental illness (pure schizophrenia!) and had an episode two weeks after their marriage. He was noncompliant and had many; apparently, she loved him and stayed with him for all these years; she is divorcing him now, after 20 years, and the divorce is difficult. But she has a lovely kid, who is smart, pretty and totally healthy.

 

[Pandora II]

Once, shortly after my psychiatric residency, I was walking down a long hallway in a psychiatric hospital at which I was moonlighting. The patients' rooms were on one side, and the nurses' station was on the other. Both nurses on call that day had severe bipolar disorder - they were very open about it. The question that puzzled me was, "how come two people with severe bipolar disorder are high achievers, nurses, working at a nice place, being best nurses in the hospital - and they both had a rocky past - and some people are in and out of the same hospital, on the other side of this hallway?" The answer, of course, is very complicated, but the first thing that came to my mind was, "both nurses take their medications, regularly, every day".

I would hazard a guess that that was 90% of the reason why, with the other 10% being educated about their illness. Problem is that finding a medication that treats the disease without horrible side-effects isn't easy. It took me nearly 8 years to hit on the right meds having been very non compliant with previous ones (I preferred the roller-coaster to feeling like a zombie in the fog). Since I found the right one for me, my life has been turned around. I'm often asked by GPs if I'd like to try stopping the meds since I'm so stable and I just go pale and feel sick at the thought... these are doctors and they are telling me how stable I am and suggesting I might stop the meds that make me this way!

I think you've had some great advice here and I hope your sister, her SO and your family can all find the best pathway through all of it.

 

[AmeliaG]

Thanks so much guys.

I just got off the phone with Sis. They had a good camping trip but came back early because of the rain that's been hitting here all day. She says its just what they needed - just to chill out and have some fun.

Sis talked to Mom earlier this afternoon; they're good and all's forgiven. Sis realizes now it was a bit of a chain reaction; because of the way he introduced her to his mom, she was still rattled when she talked to our mom. An unfortunate side effect of the way he handled it was that Sis was hit with the most shocking aspects upfront. First she met his mom when she was incoherent and didn't seem to be aware her son was in the room and secondly when Sis asked her BF afterwards, one of the first things he told her was that his mom had tried to kill his dad when he was 6 and the kids witnessed it. He has 2 younger brothers. She and her BF had very little time to talk because he had to go to work. Of course he had to go to work but it seemed like really bad timing. She kinda admits the way she came off with Mom was a bit alarmist. By the time she was calm and could reflect, Mom was still upset so she got mad at Mom and refused to talk to her. Not the most mature reaction but she's only 20.

I think this finally gave Sis the wake up call that they are too young to get married right away. Of course, it was harder for her to see it in herself but easier to see it in him regardless of whether he will develop schizophrenia later or not. He's had some horrible life experiences and at 19, he hasn't had enough time to totally work through it all. Of course, at 20, you think you can handle anything but life sometimes throws you curves.

She told me after talking with Dad, she did tell him that the way he handled it showed a lack in judgment. He was defensive at first but then apologetic. He explained in his small hometown, everyone knew the family situation, and yes, he has been prejudged a lot in his childhood because of it. That's why he was hesitant. He's also young enough that he hasn't gone through the experience of having to explain his family's situation to someone who knows nothing about it. So the first time that he had to explain it to someone totally new was going to be rough.

I think this will be a growth experience for my sister whatever happens. I love her, she's got a heart of gold, but she's very spoiled - she's the baby of the family and she's used to being taken care of. He's the oldest, equally sweet, but super responsible, and gotten into the habit of taking care of her. Now she's realizing she's not the only one that needs taken care of. Her focus has changed from wanting to get her needs met to seeing that he's taking good care of himself. We've been trying to tell her this forever not only with him but with everyone else in her life and its gone in one ear and out the other.

Of course, things are going to be rocky but she seems to be maturing.

ETA: Oops, sorry this is so long; just wanted to thank all of you for your tremendous help and let you know how things went.

 

[Trekkie]

Once, shortly after my psychiatric residency, I was walking down a long hallway in a psychiatric hospital at which I was moonlighting. The patients' rooms were on one side, and the nurses' station was on the other. Both nurses on call that day had severe bipolar disorder - they were very open about it. The question that puzzled me was, "how come two people with severe bipolar disorder are high achievers, nurses, working at a nice place, being best nurses in the hospital - and they both had a rocky past - and some people are in and out of the same hospital, on the other side of this hallway?" The answer, of course, is very complicated, but the first thing that came to my mind was, "both nurses take their medications, regularly, every day".

I would hazard a guess that that was 90% of the reason why, with the other 10% being educated about their illness. Problem is that finding a medication that treats the disease without horrible side-effects isn't easy. It took me nearly 8 years to hit on the right meds having been very non compliant with previous ones (I preferred the roller-coaster to feeling like a zombie in the fog). Since I found the right one for me, my life has been turned around. I'm often asked by GPs if I'd like to try stopping the meds since I'm so stable and I just go pale and feel sick at the thought... these are doctors and they are telling me how stable I am and suggesting I might stop the meds that make me this way!

I think you've had some great advice here and I hope your sister, her SO and your family can all find the best pathway through all of it.

I've been following this thread but have been reluctant to comment until now.

I cannot agree more with the bolded comments above.

My mother was schizophrenic and when she was medicated it was manageable. When she was not medicated it was hell.

 

[allycat0303]

AmeliaG,

I really felt compelled to answer this post. I know that you have come to a conclusion about this, but I really wanted to add to this.

My older brother is schizophrenic. He also has components of obsessive/compulsive behavior. My uncle on my father's side is schizophrenic. My risk was about 10% (probably higher) even higher if I had ever dabbled in recreational drugs. Most of my friends do not even know I have an older brother, as there were so many horrendous things done by him, that I rarely acknowledge his existence.

For many years, it was a source of great shame in my family. Very recently, my younger sister, who I've had a difficult relationship with (sometimes extremely close, and sometimes volatile), admitted to me that she was pretty sure she was bipolar.

How did she know? Well she's a doctor, so she's always recognized the signs of hypomania/ manic episodes in herself. She has known for perhaps the last 3-4 years, and she's been hiding it very well. I'm also a doctor, I'm a surgical resident, but I know enough that on retrospect, I've spoken to her many times when she was in a hypomanic episode, and never really realized it. A few months ago, she hit rock bottom, and after admitting it, is trying to get help. This is very new, and very painful to me.

Having dealt with mental illness, I can say the following. Bipolar/dysthemia is much easier to cope with the schizophrenia. There are many high functioning bipolar, and very few high functioning schizophrenics. Having lived with it nearly all my life, with my brief experience in psychiatry as a medical student. I can say the following: the drugs work, but they also stop working. The natural progression of schizophrenia (a concrete diagnosis of schizophrenia and not a *soft* diagnosis) is horrible. When the patient is about 40-50, the decline is remarkable. The pain and suffering associated with this disease, in it's END PHASE is unbearable. It is no different for me then dementia.

That being said....I am (or was) at higher risk of schizophrenia, at 31, I'm ending the peak phase in females. But to be honest, most schizophrenics have personality disorders when they are young. Their thought process, and mannerisms are not strictly normal. However, some patients remain with a personality disorder which is very manageable, while others are actually schizophrenic.

I don't tell people about my brother because I don't want the shame associated with the disease. I cannot imagine what it would have felt like if my husband had thought to himself, "Maybe I shouldn't marry her because of the risk." I believe the thought actually never crossed his mind. Although there is a higher risk, I believe that there are other diseases that are genetic predispositions which we often don't consider when choosing our partners.

This is probably not the most coherent post I have ever written, because it is so personal, but to summerize. I think you should give the young man a chance if he has yet to be diagnosed. And if he has been diagnosed, please help her realize that this is not necessarily a *manageable* disease. In most cases that I have seen, in the late 50's the patient ends up institutionalized. And finally, although most schizophrenics are not dangerous as AGBF mentioned, some of them ARE. My brother was very violent. To the extent that I still fear him daily although he does not know where I live, and have not seen him in over 15 years. It's not a trivial diagnosis. It is not even close to being a diagnosis of depression, bipolar, or personality disorder. It is a whole new level mental illness.

 

[AmeliaG]

Thanks Trekkie and Allycat for posting about your experiences. I really feel for the hardships you must have faced growing up and that's what our family is feeling right now for this young man. This was what my mom was most concerned about - the devastating effects on families that the disease can have. During her summer volunteering, she didn't work with anyone with as serious condition as his mother but she did see some families that were having problems coping - especially children and younger brothers and sisters.

Everybody's posts have been so helpful; It helped us make a lot of sense of what my sister was telling us - the fact that medications can work somewhat but you need to take them and getting the combination right without severe side effects is not that easy. Mom knew that to some extent from when she spent the summer volunteering but not to the extent that we see here.

I'd be lying if I said we wouldn't be more comfortable if they waited until he gets out of his early 20s but my sister's focus now is more understanding the impact this has had on him and that will take awhile. Like a lot of your posts said, he does have a great hesitancy to talk about it becuase of the social stigma so the two of them will have to go slow.