Today we had our second 'family meeting' with the doctor. This was our second meeting with a psychiatrist since Kit has been in the hospital. And it was a new doctor. The past resident is finished his rotation and this doctor is a fellow covering over Christmas break. Really nice guy - Dr. Kumar. Spent almost two hours with us. He asked us for the whole history - back to high school and right up to now. Very thorough. We really liked him. Kit was still in bed when we got there and he didn't join us. Most of the talk was about meds... he has had some significant improvement since being on them - but it has not changed his false beliefs about the controller. He still thinks he is totally controlled by someone/thing else. He is on rispiridal - a newer antipsychotic both orally and by depot injection. Because he is on the injectables it takes a little longer to take effect so we need to keep waiting. The doctor is trying to find out how much of the psychosis is caused by street drugs - cannabis - and how much is the underlying illness.
Much of the discussion was also about the plan for the future. Kit basically has three choices when his form is up
1) live in Adam's basement with a support team - case worker, psychiatrist, inject-able meds, go on ODSP and/or get a job.
2) transfer to another facility like Ontario Shores for some more intense rehab. They have a great program called STEP which is for young schizophrenics to learn about and deal with their illness.
3) back to the shelter system.
We would like #2 or #1, but Kit would prefer #3. So frustrating. Who spends 28 days in the hospital to be released to the street? What a waste... We just have to hope that the next 15 days show Kit some insight into his disease.
The doctor told us there are some good things - one being that Kit was highly functioning before he got sick. Was in university, did well in high school and the second being that the first psychosis may have been triggered by street drugs. (and possibly the following ones). What is going poorly for him is the lack of insight - that he doesn't see his belief system as being wrong. Also the lack of compliance with his meds.
We celebrated our Skelly family dinner tonight with Adam & Alison, Liz & Al, Britt, Molly, Brendan and Eddie and Emma came over as well. It was awesome to have everyone together tonight with Kit and know that he has people who love him and will be there for him. Even though at this point Kit can't really see how important these relationships are to him - they are what will make the difference for him. It really was so great to see Bren, Eddie and Kit together. I hope Kit goes to sleep tonight thinking about this long term friendship that you have all had for so long. Darn - I wish I had gotten a picture of the three of them together...
Friday, December 30, 2011
Tuesday, December 20, 2011
Schizophrenia...
Wow!!! I just saw that 173 people have looked at my blog! I'm totally shocked. So I thought if that many people are checking it out - think about all those people who can learn from it. My story doesn't really tell much about schizophrenia - just what has happened to us. So for those who are interested here's some info...
Schizophrenia is a disturbance of the brain's functioning. It can seriously disturb the way people think, feel and relate to others. About one person in 100 develops this disease, and men and women are affected equally however men usually have their first onset of psychosis in their late teens early 20's, while woman usually experience it a few years later. The onset can be so gradual that a family doesn't notice for a long time, or the onset can be rapid. In our case it was the former - when we look back we can see changes that were occurring while Kit was in high school, but we attributed them to adolescence and the typical changes that might happen at that time in his life. People with schizophrenia also often suffer from drug addictions as well - often to help self medicate and treat their symptoms.
There are three stages of schizophrenia. Prodomal, active and residual. In the first stage - the beginning people may lose interest in their normal activities and pull away from friends and family. They can be easily confused, have trouble concentrating and prefer to spend their time alone. Many become obsessed with religion or philosophy. This stage can last weeks, months, years. For us it probably started in grade 9 and lasted till 2nd year University when it became a crisis. The second stage is the active stage. The person may have delusions, hallucinations (either visual or auditory) and have a marked distortion in the way they think. This is the most frightful time for both the person suffering from schizophrenia and their family. The last stage the person will be listless and withdrawn and have trouble concentrating. It can present similar to the first stage. The stages may recur over and over in a persons life.
When people talk about schizophrenia there are two types of symptoms. Positive and negative. In this case it means what the disease adds and takes away. For example some positive symptoms would be: delusions (false beliefs) hallucinations (could hear, see, taste , smell or feel something that isn't there) disorganized thoughts, moods and behaviors. The negative symptoms would be: slowing of physical activity, reduced motivation, loss of interest in the feelings and lives of those around them, lack of concern for personal appearance. So the positive symptoms are the symptoms we see and are scared of and the negative symptoms are the ones we don't always see but are equally distressing.
There is no single cause for schizophrenia. There is definitely a genetic link, but they haven't determined exactly how that fits. There are things that can trigger psychosis - extreme stress and marijuana to name a couple. They have found that their is a much higher level of dopamine in a person's brain who has schizophrenia.
Treatment is usually done in a hospital as an in patient or an out-patient. Treatment usually consists of anti-psychotic drugs and psycho-social interventions. The anti-psychotic drugs help to control the amount of dopamine in the brain - but dopamine is the neurotransmitter responsible for our feeling good, so take it away and you don't feel so great any more. All of the anti-psychotic drugs have awful side affects. It's a matter of find the one that works with each person and the right balance to take away the positive symptoms without making the negative ones worse. All done by trial and error. While one drug may work well for one person - it may not work at all on another. One person may have terrible side-affects from one drug and another may not. It's totally hit and miss. And frustrating!
One book I have read said that 30% of people diagnosed with schizophrenia do very well - live relatively normal lives, have a job, relationships etc. Another 30% don't do so well - they may be able to live on their own, supported by disability or welfare and another 30% are those we see on the street. The last 10% commit suicide. At the beginning we were very hopeful that Kit would be in the top 30%. Now we are hoping for that but reality looks like it may be the second 30%. And that's okay. It beats the rest!
Schizophrenia is a disturbance of the brain's functioning. It can seriously disturb the way people think, feel and relate to others. About one person in 100 develops this disease, and men and women are affected equally however men usually have their first onset of psychosis in their late teens early 20's, while woman usually experience it a few years later. The onset can be so gradual that a family doesn't notice for a long time, or the onset can be rapid. In our case it was the former - when we look back we can see changes that were occurring while Kit was in high school, but we attributed them to adolescence and the typical changes that might happen at that time in his life. People with schizophrenia also often suffer from drug addictions as well - often to help self medicate and treat their symptoms.
There are three stages of schizophrenia. Prodomal, active and residual. In the first stage - the beginning people may lose interest in their normal activities and pull away from friends and family. They can be easily confused, have trouble concentrating and prefer to spend their time alone. Many become obsessed with religion or philosophy. This stage can last weeks, months, years. For us it probably started in grade 9 and lasted till 2nd year University when it became a crisis. The second stage is the active stage. The person may have delusions, hallucinations (either visual or auditory) and have a marked distortion in the way they think. This is the most frightful time for both the person suffering from schizophrenia and their family. The last stage the person will be listless and withdrawn and have trouble concentrating. It can present similar to the first stage. The stages may recur over and over in a persons life.
When people talk about schizophrenia there are two types of symptoms. Positive and negative. In this case it means what the disease adds and takes away. For example some positive symptoms would be: delusions (false beliefs) hallucinations (could hear, see, taste , smell or feel something that isn't there) disorganized thoughts, moods and behaviors. The negative symptoms would be: slowing of physical activity, reduced motivation, loss of interest in the feelings and lives of those around them, lack of concern for personal appearance. So the positive symptoms are the symptoms we see and are scared of and the negative symptoms are the ones we don't always see but are equally distressing.
There is no single cause for schizophrenia. There is definitely a genetic link, but they haven't determined exactly how that fits. There are things that can trigger psychosis - extreme stress and marijuana to name a couple. They have found that their is a much higher level of dopamine in a person's brain who has schizophrenia.
Treatment is usually done in a hospital as an in patient or an out-patient. Treatment usually consists of anti-psychotic drugs and psycho-social interventions. The anti-psychotic drugs help to control the amount of dopamine in the brain - but dopamine is the neurotransmitter responsible for our feeling good, so take it away and you don't feel so great any more. All of the anti-psychotic drugs have awful side affects. It's a matter of find the one that works with each person and the right balance to take away the positive symptoms without making the negative ones worse. All done by trial and error. While one drug may work well for one person - it may not work at all on another. One person may have terrible side-affects from one drug and another may not. It's totally hit and miss. And frustrating!
One book I have read said that 30% of people diagnosed with schizophrenia do very well - live relatively normal lives, have a job, relationships etc. Another 30% don't do so well - they may be able to live on their own, supported by disability or welfare and another 30% are those we see on the street. The last 10% commit suicide. At the beginning we were very hopeful that Kit would be in the top 30%. Now we are hoping for that but reality looks like it may be the second 30%. And that's okay. It beats the rest!
Almost Christmas
Well I left off my last post at just before Christmas 2008 and now we are at just before Christmas 2011. Things were better then than they are now...
After a few days in the adolescent ward three years ago and some heavy doses of anti-psychotics Dr. Teshima said he could be an outpatient and just participate in the day program. At this point Kit was quite scared of his diagnosis and wanted to comply to get better. After two weeks there he came home and we had a great Christmas with him in Toronto. Guelph University was amazing and they just erased his first term from their records so that he wouldn't have the marks from those courses reflected on his transcripts. Kit went back to Guelph part time taking three courses from January to April. He took the bus to Guelph every Monday morning, had a course on Monday afternoon, Tuesday morning and Wednesday morning. Then he came home every Wednesday evening. He took his meds. He was pretty happy. Things were going quite well. We all took a deep breath and thought he's going to be okay!
That summer we went to Africa with Kit and Robyn for three weeks. It was a fantastic trip, spent two weeks helping in an orphanage near Nairobi and then a few days on safari in the Masai Mara and then to Zanzibar to have a beach holiday. A few days in London on our way home finished off our trip. In London Kit showed some agitation, but we really thought it was due to the stress of travelling, but in hindsight he was probably off his meds at that point...
After the summer Kit transferred to Ryerson in September 2009 - taking about three courses. He was living at home but not doing super well. By Christmas we knew things were bad again and after a difficult Christmas in Vermont we came home and asked him to leave. He refused. Said he was fine - didn't want to go back to school, would get a job. Had not been taking his meds. So - we had the police come and remove him from the house. That was one of the hardest things we ever had to do. He was taken to CAMH where he was admitted on a Form 1, but couldn't keep him very long as he was not a danger to himself or others and two days later we dropped him at Covenant House as he did not want to go back on his meds. We had decided with advice from his psychiatrist that in order for us to support him at home he had to take his medication. So he stayed at Covenant house for five months, hung out on Yonge Street, spent time at the Yonge Street Mission's Evergreen on Yonge St. and continued to use street drugs to treat his symptoms. The worst mix you can have. By May 2010 he was in rough shape and he finally brought himself to St. Mikes hospital where we found him and brought him home.
He went back to see his psychiatrist - Dr. Lewis at Sunnybrook and started back on medication. This time they tried olanzapine and he seemed to get better quite quickly. He got a job at the local Valuemart working in dairy and spent the rest of his time hanging around the house. He joined Pure Fitness and was doing quite well. Had a great summer with us, Christmas, then a family trip on a cruise in March 2011. At some point around then he went off his meds again. Had a hard time going to work, was frustrated easily and then finally we had to ask him to leave again in May 2011. He moved down to Covenant House again where he stayed for about three months. He then started believing that he had some kind of sinus infection - that he was rotting from the inside out. He went to Mount Sinai, Toronto General, we took him to St. Mikes but there was nothing wrong with him. He was so distressed but absolutely believed something was wrong physically. He tried to aspirate this fluid from inside him with needles but that didn't work but Covenant House found the needles and kicked him out accusing him of having drug paraphernalia. He then moved into the YMCA house at Queen and Spadina where he spent the next three months. His typical day was get up, eat breakfast at the Y House then walk up to Ryerson where he could still use his student ID to get access to the internet. He would download movies or old TV shows and spend the day watching them. Lunch at Evergreen and then back to the Y House for dinner. Shower, sleep, repeat... He seemed to be coasting along at this level, functioning to a degree, but not well. Adam suggested that he move into his basement apartment which we thought would be worth a try. At first Kit said no, but then changed his mind. He would move in December 1st. Dave & I paid Adam rent for December and were pretty excited about this new brother relationship in the works. On November 30 we called Kit, no answer. No response from messages left at the Y. Same thing on December 1st. We were quite worried and those awful privacy laws make it impossible to get any information. Finally on December 2nd the Y told me after I begged them to let me know if he was okay that he had been there that night but had been very disruptive. I was relieved to know he was safe and thought he really didn't want to move in with Adam and he was avoiding us.
That afternoon - Kit called Adam, but he sounded different. Adam and Dave picked him up at Yonge and Gerrard and realized he was in bad shape. He was only rhyming words, kind of rapping and ranting but making little sense. They brought him to Sunnybrook Hospital on December 2 where they immediately put him under a Form 1. Seventy two hours in the hospital against your will. He spent two days in Emerg, in the same room as the first time and then went upstairs to the adult psych ward on Sunday afternoon. On Monday the doctors gave him a form 3 which is 14 days in hospital. They started him on anti-psychotics and gave him an injection as well. We want him to have bi-weekly injections so that we know he is actually taking his meds. After three years of being the pill police it's the only way. He finished up his two weeks on Monday and although he is less agitated and speaks properly now, he is still delusional. He truly believes he is in a virtual reality - part of a video game - like the Matrix. He was given a form 4, renewal of form 3 and is thirty days more. That's where we are now...
After a few days in the adolescent ward three years ago and some heavy doses of anti-psychotics Dr. Teshima said he could be an outpatient and just participate in the day program. At this point Kit was quite scared of his diagnosis and wanted to comply to get better. After two weeks there he came home and we had a great Christmas with him in Toronto. Guelph University was amazing and they just erased his first term from their records so that he wouldn't have the marks from those courses reflected on his transcripts. Kit went back to Guelph part time taking three courses from January to April. He took the bus to Guelph every Monday morning, had a course on Monday afternoon, Tuesday morning and Wednesday morning. Then he came home every Wednesday evening. He took his meds. He was pretty happy. Things were going quite well. We all took a deep breath and thought he's going to be okay!
That summer we went to Africa with Kit and Robyn for three weeks. It was a fantastic trip, spent two weeks helping in an orphanage near Nairobi and then a few days on safari in the Masai Mara and then to Zanzibar to have a beach holiday. A few days in London on our way home finished off our trip. In London Kit showed some agitation, but we really thought it was due to the stress of travelling, but in hindsight he was probably off his meds at that point...
After the summer Kit transferred to Ryerson in September 2009 - taking about three courses. He was living at home but not doing super well. By Christmas we knew things were bad again and after a difficult Christmas in Vermont we came home and asked him to leave. He refused. Said he was fine - didn't want to go back to school, would get a job. Had not been taking his meds. So - we had the police come and remove him from the house. That was one of the hardest things we ever had to do. He was taken to CAMH where he was admitted on a Form 1, but couldn't keep him very long as he was not a danger to himself or others and two days later we dropped him at Covenant House as he did not want to go back on his meds. We had decided with advice from his psychiatrist that in order for us to support him at home he had to take his medication. So he stayed at Covenant house for five months, hung out on Yonge Street, spent time at the Yonge Street Mission's Evergreen on Yonge St. and continued to use street drugs to treat his symptoms. The worst mix you can have. By May 2010 he was in rough shape and he finally brought himself to St. Mikes hospital where we found him and brought him home.
He went back to see his psychiatrist - Dr. Lewis at Sunnybrook and started back on medication. This time they tried olanzapine and he seemed to get better quite quickly. He got a job at the local Valuemart working in dairy and spent the rest of his time hanging around the house. He joined Pure Fitness and was doing quite well. Had a great summer with us, Christmas, then a family trip on a cruise in March 2011. At some point around then he went off his meds again. Had a hard time going to work, was frustrated easily and then finally we had to ask him to leave again in May 2011. He moved down to Covenant House again where he stayed for about three months. He then started believing that he had some kind of sinus infection - that he was rotting from the inside out. He went to Mount Sinai, Toronto General, we took him to St. Mikes but there was nothing wrong with him. He was so distressed but absolutely believed something was wrong physically. He tried to aspirate this fluid from inside him with needles but that didn't work but Covenant House found the needles and kicked him out accusing him of having drug paraphernalia. He then moved into the YMCA house at Queen and Spadina where he spent the next three months. His typical day was get up, eat breakfast at the Y House then walk up to Ryerson where he could still use his student ID to get access to the internet. He would download movies or old TV shows and spend the day watching them. Lunch at Evergreen and then back to the Y House for dinner. Shower, sleep, repeat... He seemed to be coasting along at this level, functioning to a degree, but not well. Adam suggested that he move into his basement apartment which we thought would be worth a try. At first Kit said no, but then changed his mind. He would move in December 1st. Dave & I paid Adam rent for December and were pretty excited about this new brother relationship in the works. On November 30 we called Kit, no answer. No response from messages left at the Y. Same thing on December 1st. We were quite worried and those awful privacy laws make it impossible to get any information. Finally on December 2nd the Y told me after I begged them to let me know if he was okay that he had been there that night but had been very disruptive. I was relieved to know he was safe and thought he really didn't want to move in with Adam and he was avoiding us.
That afternoon - Kit called Adam, but he sounded different. Adam and Dave picked him up at Yonge and Gerrard and realized he was in bad shape. He was only rhyming words, kind of rapping and ranting but making little sense. They brought him to Sunnybrook Hospital on December 2 where they immediately put him under a Form 1. Seventy two hours in the hospital against your will. He spent two days in Emerg, in the same room as the first time and then went upstairs to the adult psych ward on Sunday afternoon. On Monday the doctors gave him a form 3 which is 14 days in hospital. They started him on anti-psychotics and gave him an injection as well. We want him to have bi-weekly injections so that we know he is actually taking his meds. After three years of being the pill police it's the only way. He finished up his two weeks on Monday and although he is less agitated and speaks properly now, he is still delusional. He truly believes he is in a virtual reality - part of a video game - like the Matrix. He was given a form 4, renewal of form 3 and is thirty days more. That's where we are now...
Thursday, December 15, 2011
In the beginning
I kept a little journal for a couple of days... this is my entry for November 27, 2008.
Six Days. Who could have thought so much could change in so little time.
Friday November 21, 2008 I get a call from Kit in the morning saying he's coming home for the weekend. That he's messed up and can we pick him up. Sure honey, no problem, we'll be there in an hour.
When we arrive he's at the door ready to leave with nothing more than his t-shirt and jeans. We tell him we have to get his clothes and laundry. His room is a disaster, everything everywhere with a slight underlying odour of weed. Dave & I fell a bag full of laundry, two bags of garbage. Do a ton of dishes. He must have had every mug from the house in his room. There are at least ten empty red bull cans on the floor, garbage everywhere. Kit gets quite agitated, threatening me. We grab the last of the dishes, wash them and drive home.
The whole time I'm wondering - what happened to my little boy? How can my boy be such a mess? What did we do? Why can't things just go smoothly for my kids?
In the car he's telling us about the conspiracy against him. How all the second year students are trying to show him the faults he has just to help him. Random things like a truck passing with Jesus' name written in the dirt are messages meant for him. Seeing some guy Frank on the street was a message. He asks - are we in on it? Who are we talking to? Do I call his friends? Am I on Facebook? I try to reassure him that we have nothing to do with any of it, and there is probably no conspiracy. Of course there is he responds - we just can't listen/understand. All the way home this carries on - he's trying to explain how some song lyrics are meant for him and are part of the conspiracy. He tells us he gets totally shaky when he thinks about it and he is so agitated. Now we know there is a problem. We call his family doctor. He's busy, he'll call back. Kit's crying. We stop for a sub, he eats half and then is full. Oh - he is so thin. He must have lost ten pounds.
Anyhow we get to Toronto - go straight to the family Dr., hoping for some Ativan to calm him down. Dr. R says go to Emerg he can't see Kit. We head up to Sunnybrook. Kit asks why are we going to the hospital? Just to get you a prescription for some kind of anti-anxiety pill. You're having an anxiety attack. You need something to help you calm down so you can rest over the weekend. He seems to accept that. And that's ALL we thought we were going to the hospital for too. Once in emerge he asks why again. I answer again. Very simple. Let's get you some Ativan. One minute later - he asks again, I respond again. Very calmly, but I'm getting scared that he's sicker than I know. I just want that triage nurse to call our name.
Then Kit jumps up says he's getting out of here. I grab his sweater, tell him to stay. He bolts to the door. I call for help. I need him seen. The security guard grabs Kit and tells me to stay put. Tells me I'm scaring the patients. I tell her we need some attention. She says "Clearly YOU need attention" Kit tries to get away from her. He tells her I'm a sex offender and a child molester. I succumb to tears and fall back against the wall where I just sit down and cry. They take Kit away, they take me outside (a lovely nurse does) and back into a little room where she leaves me to find out about Kit. I call my sister. Dave is still parking the car. This has all happened in less than 10 minutes. Cathie is on her way. The nurse comes back, says Kit is in a quiet room, in restraints. The police have been called.
OMG - what is going on??? I wait, and wait... I don't really remember what happened next. At some point Dave arrives, Cathie arrives. We are now in the quiet room. Kit is in the 'safe' room. The cops tell us no problem. Look after your boy. No charges are to be laid. (evidently he assualted the security guard)
At some point the Dr. Macdonald? comes - tells us Kit is restrained, has been given some anti psychotics, this is some sort of thought process disorder under the schizophrenia umbrella. The world is gone. What happened? This is my little smart funny boy. He's got to be fine. It's just stress, drugs, anything. Please be anything else.
Somewhere along the line we have given family history etc. Cathie is right there, Thank God. I'm in a fog, but I know she'll get all the info. Kit is given a Form I. Has to stay in the hospital for 72 hours. Relief, worry. WHY???? We see him, arms and legs restrained in an awful room. Gillian the crisis nurse is lovely. Calm, reassuring but we know something is really wrong. We visit on and off all weekend. There are no beds in the psych ward till Monday. He is watched by a 'sitter' 24/7. They are all nice to him. On Sunday we get him to the shower. He is complying. He is no longer in restraints. Kit wants to come home but he can't. Dr. Moss? asks him if he will voluntarily go to the Youth psych ward. Kit reluctantly agrees and understands we just all need to find out what's going on. So he's up on F2. It's kind of okay but also pretty awful. Locked ward. Matthew walks around like a zombie. Chandler says 'Hey dude, what's your name? When's your birthday?' She pulls out a book on astrology so Kit can read about himself. She tells him he's so skinny. She wishes she were thin too. Anorexia? she is sweet and bubbly but KIt's not about to hone his social skills here. He said he thought it would be fun to check out the 'crazies' but I don't think he's having any fun.
Marg the nurse has shown us to his room. Given us the package. Schedule, rules. I want to take Kit's hand and walk him right outta there. Dave arrives. We chat, we leave Kit to do his thing there. We'll bring him back some stuff. He goes to have lunch with the other kids. The next day they think he is compliant enough to give him a bracelet that means he can leave the ward with parents or staff. Dr. Teshima sees him. Orders tests - EEG & CT scan.
Tuesday night he thinks it would be fun to try to escape. He says he went to the nurses offices, knocked and ran back to his room and hid in the closet. Hoping they would go down the hall to open the door and he would run out. They found him in the closet, gave him some Loxapine and put him to bed.
Wednesday we bring him cookies and let him shave and took him out for a hospital walk. He was funny, psychotic and easy. We brought him back where later he tried to wear a hospital gown over his clothes to try to escape as a patient.
That's all I wrote... I can feel all those feelings again when I read/write them. He's back in the same place now - just the adult ward - not youth ward. His room in emerg was the same one this time as last. Must be the 'special' room. Hard to believe that it's been three years since then...
I'll continue at another time...
I'll continue at another time...
Learning how to blog
Well - this was harder than I thought. But after one hour I have a blog to start. I'm hoping to put out the info about my family's journey with our son with schizophrenia. Maybe it will help someone else - maybe it will help me. Don't know yet, just thought it might be a good idea. But now it's time to make dinner and I've run out of brain power for now.
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