Top hits from 2009
FROM antipsychotics
and talk show hosts
to a baby's Paxil heart defect,
needing to know how to monitor Depakote blood levels
and remembering a DTC walk down memory lane,
being the captain of my soul
and wanting to know why Pharma spent $1.2 million a day lobbying congress,
having golden moments and magnificent days
and hearing my daughter start talking and singing and laughing again
holding onto hope for her future, and standing alongside her fighting for her rights and dignity. I hope the best for everyone, in this new and Happy New Year.
Cheers!
Thursday, December 31, 2009
Wednesday, December 30, 2009
movement
had a treatment team meeting, without being on the calendar today, when i went to visit. yesterday we demanded the treatment plan be known, and of course there was not one. the ball is now rolling for another meeting next week and a discharge plan to be created immediately. the pressure is on, because all of this talk still is not action. still no outside time, they count the wrought iron fenced in patio as "fresh air space". tomorrow is my daughter's birthday, and we are taking her cake and hope somehow tomorrow can feel somewhat like a birthday in that place. they are under pressure and for good reason. she is still silent, day 3, and she stayed in the visiting room when they rushed in to talk--and she stood there with tears rolling down her face, i told them that means something. it's still crappy, but the heat on the burner will remain on high until she is discharged.
just to go outside
unbelievable the song and dance that happened when we asked about a treatment plan and outside time. not sure the social worker who introduced self, then said she is quitting anyway ever had intelligent advocating questions asked of her, actually i don't think this place is used to treating people with basic dignity and civil rights, that's for sure. once you arrive you get slapped with a 6 month, yes, 180 day new court order to reside there for care. no jury, no free attorney. no advocate. no wonder people give up. the basketball court is not available to the ward she is on according to the social worker, so because there is not a locked outside area she is punished and not given fresh air, and she is not the only patient there. this is a warehouse for throw aways in society, would anyone know this place existed if i hadn't decided to write about it? i was there 4 years ago with her when another hospital sent her there because she turned legal adult age 18. she was there 21 days and returned mute for 3 years. i went outside with her to play basketball then, because i demanded she get the same right as smokers to get outside. this is probably the last place in washington that allows smoking on the property, i'm shocked the nanny state hasn't landed on this place, but it won't because no one cares.
the Governor is closing long term facilities, people have no where to go, so they warehouse them at western. there are many more things my daughter deserves to have happen in her life and this being sent to western is an apology letter time from all doctors, especially the ones who never set foot in this place.
the Governor is closing long term facilities, people have no where to go, so they warehouse them at western. there are many more things my daughter deserves to have happen in her life and this being sent to western is an apology letter time from all doctors, especially the ones who never set foot in this place.
Tuesday, December 29, 2009
Senate Health Care Bill Contains $1.25 Billion Gift To Sen. Stabenow
Senate Health Care Bill Contains $1.25 Billion Gift To Sen. Stabenow: Furious Seasons, Philip Dawdy reporting:
"There's been a lot of coverage of amendments to the recently-passed Senate health care reform bill over the last 10 days, especially the Medicare giveaways for the State of Nebraska reportedly employed to capture the support of Sen. Ben Nelson (D-Nebraska) as well as giveaways to other Democratic senators. But one provision of the amendments, which were introduced on December 19, has escaped notice of the mainstream media and the political blogosphere alike. That would be $1.25 billion included in the amendments, apparently to secure the vote of Michigan Senator Debbie Stabenow. Sen. Stabenow, a Democrat, was a passionate advocate for the so-called public option who voted to support a bill without a public option in exchange for inclusion of $1.25 billion in new federal spending to support "centers of excellence" in depression treatment."-Philip Dawdy, investigative journalist, Furious Seasons news
We as citizens of the US have failed people if this is how we care for them, creating "centers of excellence", based on little evidence for treatment that works, while allowing the people already in need suffer in the hands of defunct, low budget, and inadequate care facilities, such as the one my daughter is in now and the one that she was residing in before they committed her for skipping a few pills.
I'd be concerned if a family member of mine ended up in one of these new pharma-funded "centers of excellence", one fact will be that the pharmaceutical company's drugs will be the center base of care, and we wonder why depression has been painted as a crisis in this country. It is not a crisis, the crisis is the corruption, and loss of moral compass, the allowance of drug companies to influence health care reform is the crisis.
"There's been a lot of coverage of amendments to the recently-passed Senate health care reform bill over the last 10 days, especially the Medicare giveaways for the State of Nebraska reportedly employed to capture the support of Sen. Ben Nelson (D-Nebraska) as well as giveaways to other Democratic senators. But one provision of the amendments, which were introduced on December 19, has escaped notice of the mainstream media and the political blogosphere alike. That would be $1.25 billion included in the amendments, apparently to secure the vote of Michigan Senator Debbie Stabenow. Sen. Stabenow, a Democrat, was a passionate advocate for the so-called public option who voted to support a bill without a public option in exchange for inclusion of $1.25 billion in new federal spending to support "centers of excellence" in depression treatment."-Philip Dawdy, investigative journalist, Furious Seasons news
We as citizens of the US have failed people if this is how we care for them, creating "centers of excellence", based on little evidence for treatment that works, while allowing the people already in need suffer in the hands of defunct, low budget, and inadequate care facilities, such as the one my daughter is in now and the one that she was residing in before they committed her for skipping a few pills.
I'd be concerned if a family member of mine ended up in one of these new pharma-funded "centers of excellence", one fact will be that the pharmaceutical company's drugs will be the center base of care, and we wonder why depression has been painted as a crisis in this country. It is not a crisis, the crisis is the corruption, and loss of moral compass, the allowance of drug companies to influence health care reform is the crisis.
superior court answer to keep vulnerable people safe, lock them up in a dangerous place
on December the 9th, 2009 the King Co Superior court judge deemed my daughter, age 21 a probable victim of society, not a danger to self, not a danger to others, a vulnerable person that harm and exploitation may happen to in society, and though agreeing with her defense that she would not want to be returned to western state hospital after a 21 day stay in March 2006, where sexual assault was the topic--and she was discharged via my letter to the Governor per the lack of safety there--she was sentenced to the institution anyway.
--
the premise of care
based on a so-called premise of long term care, my daughter was discharged from one hospital to the institution on December 21, 2009. Since her arrival to the institution she has continued to decline, stop speaking, and has in all intent and purpose, based on my observation of knowing my daughter, living with my daughter and being with my daughter her entire life through all cycles of this mental illness escapade---has given up.
i can see it. it is up to those around her to rise to the occasion and move her somewhere else. period.
--
they locked her up within the system to keep her safe from society
inside the hospital, for the last week she has been in seclusion, in a room with 4 walls and a bed, the room they used the first night she was there, because she fell apart when i left. the next day the treatment team meeting gathered and told me the direct result of me (being told to leave by the doctor and staff because "your hour is up") leaving, and because she was crying, was locked up.
now the room is being used to "keep her safe" from other patients.
so the answer from this system is to take my daughter, and lock her in a room, leave her alone and lock her in side rooms hoping she will draw or color, she has had no outside time, she cannot go outside without a special permission from the "team", each day i ask about it they pass the buck, and today was the first day i met the social worker who in fact told me she is quitting her job so she won't actually be able to do anything.
1. no outside time, fresh air given
2. locked away in small rooms due to safety issues from other patients
3. visitors moved quickly into side rooms to visit being told the place has violent people in it, so it's for our own safety
Is this the plan for long term care we want for my daughter? is this how the system treats everyone? is this how we care for vulnerable people like my daughter?
She has not said one word in 2 days. she has been holding onto and sleeping with as a pillow a plush stuffed dog i gave her on christmas, she has the slippers on i brought her and she appears scared, terrified. she is terrified, and for good reason. her rights have been stripped, she is in a place that was supposed to give her care and safety from the world, and the world the system created has locked her up worse.
SHE IS A CAGED PERSON.
This is unacceptable.
--
the premise of care
based on a so-called premise of long term care, my daughter was discharged from one hospital to the institution on December 21, 2009. Since her arrival to the institution she has continued to decline, stop speaking, and has in all intent and purpose, based on my observation of knowing my daughter, living with my daughter and being with my daughter her entire life through all cycles of this mental illness escapade---has given up.
i can see it. it is up to those around her to rise to the occasion and move her somewhere else. period.
--
they locked her up within the system to keep her safe from society
inside the hospital, for the last week she has been in seclusion, in a room with 4 walls and a bed, the room they used the first night she was there, because she fell apart when i left. the next day the treatment team meeting gathered and told me the direct result of me (being told to leave by the doctor and staff because "your hour is up") leaving, and because she was crying, was locked up.
now the room is being used to "keep her safe" from other patients.
so the answer from this system is to take my daughter, and lock her in a room, leave her alone and lock her in side rooms hoping she will draw or color, she has had no outside time, she cannot go outside without a special permission from the "team", each day i ask about it they pass the buck, and today was the first day i met the social worker who in fact told me she is quitting her job so she won't actually be able to do anything.
1. no outside time, fresh air given
2. locked away in small rooms due to safety issues from other patients
3. visitors moved quickly into side rooms to visit being told the place has violent people in it, so it's for our own safety
Is this the plan for long term care we want for my daughter? is this how the system treats everyone? is this how we care for vulnerable people like my daughter?
She has not said one word in 2 days. she has been holding onto and sleeping with as a pillow a plush stuffed dog i gave her on christmas, she has the slippers on i brought her and she appears scared, terrified. she is terrified, and for good reason. her rights have been stripped, she is in a place that was supposed to give her care and safety from the world, and the world the system created has locked her up worse.
SHE IS A CAGED PERSON.
This is unacceptable.
imperative being, in the moment ramble
by christmas eve, i had unraveled into a sobbing disaster. it was imperative that i gain control over my emotional gut-kick i had felt from the transfer to the institution.
this last week was difficult, but it went on. there were reprieves along the way the last few days. some nice walks, that are mandatory for keeping my mind calm and rational. i had to tell myself to get a grip for myself and those around me, and keep it that way.i was also able to take a break after the hospital on my birthday and celebrate the moment. my mom gave me gas money. i have people who love me. i created a recipe while walking in the grocery store last night , using cooking for diversion of thought:
stephany's shrimp bisque
1 package of pepperidge farm puff pastry, bake according to directions
1/2 cup cooked tiny shrimp
2-3 T butter
1/2 cup heavy cream
1 clove garlic, pressed
1 can campbell's cream of shrimp soup
3 oz brick of cream cheese
dash of salt
1/4 cup or so of chardonnay wine
2 T shredded parmesean cheese
Bake the puff pastries, while they are baking, melt butter in sauce pan, add the garlic and everything else. stir until smooth, adding cream and wine to taste. i usually don't measure things when i cook, so this is pretty simple to expand on. once the pastry is baked, i placed 3 in each large soup bowl. place a little parmesean cheese inside the bottom of the pastry. add generous amounts of the soup into the pastries in each bowl, this recipe made 2 hearty servings. place the little pastry "cap" on top after sprinkling a little bit of grated sharp cheddar cheese on the soup. it was delicious if i do say so myself. enjoy the moment, each one is a gift.
this last week was difficult, but it went on. there were reprieves along the way the last few days. some nice walks, that are mandatory for keeping my mind calm and rational. i had to tell myself to get a grip for myself and those around me, and keep it that way.i was also able to take a break after the hospital on my birthday and celebrate the moment. my mom gave me gas money. i have people who love me. i created a recipe while walking in the grocery store last night , using cooking for diversion of thought:
stephany's shrimp bisque
1 package of pepperidge farm puff pastry, bake according to directions
1/2 cup cooked tiny shrimp
2-3 T butter
1/2 cup heavy cream
1 clove garlic, pressed
1 can campbell's cream of shrimp soup
3 oz brick of cream cheese
dash of salt
1/4 cup or so of chardonnay wine
2 T shredded parmesean cheese
Bake the puff pastries, while they are baking, melt butter in sauce pan, add the garlic and everything else. stir until smooth, adding cream and wine to taste. i usually don't measure things when i cook, so this is pretty simple to expand on. once the pastry is baked, i placed 3 in each large soup bowl. place a little parmesean cheese inside the bottom of the pastry. add generous amounts of the soup into the pastries in each bowl, this recipe made 2 hearty servings. place the little pastry "cap" on top after sprinkling a little bit of grated sharp cheddar cheese on the soup. it was delicious if i do say so myself. enjoy the moment, each one is a gift.
changes to ensure quality care in state funded mental health institutions
1. the state institution for long term care provided by the court shall, then provide gender specific wards for patients.
2. the state shall provide gender specific wards to patients based on religious and or cultural needs.
3. the state shall provide gender specific wards to patients based on choice/preference.
4. the state shall, acknowledge patients right to reside in a safe environment, and without gender specific wards and single occupant rooms as a choice, they are not acknowledging patient civil liberties.
5. the state shall provide, one to one staff care for patients who are at risk for sexual assault, creating a safe environment within the one that exists. if the existing environment is not conducive to patient safety, from sexual or physical assault, the state shall provide care off property and accommodate the patient in all areas, paid for by the state.
6. the state will stop ignoring duel diagnosed patients. patients with PDD/Aspergers/Autism and psychotic features shall have gender specific wards with accommodations per their needs, for communication, based on ability to communicate, that being said, technology for communication via computer programs and audio talk boxes, calendars, etc shall be provided for patient to use to communicate needs.
7. patients who are non verbal shall be acknowledged via offering opportunities to patient equal to that of their peers, not assuming lack of speech means lack of interest in activities.
8. professionally trained speech therapists shall be provided to patients who fit the need.
9. patients who are non verbal shall have individual plan of treatment, patient will be offered a phone call to family or friend once or more per day, dialed by staff, and followed through by staff to ensure patient has opportunity to speak to person of choice, as based on patient rights listed by the hospital. *some patients will speak to certain people only
10. if safety of patient or appropriate accommodations cannot be ensured, met, achieved or enforced, within the institution, the state shall provide care elsewhere in a least restrictive setting, paid for by the state, in an appropriate setting for the patient, via patient choice.
11. patients will be acknowledged for outside time for fresh air as a non smoker. the need for daily fresh air breaks should not be subject to smoking patients only. all patients shall have mandatory fresh air breaks 2 times a day minimum 15 minutes, with no level needed. levels used for fresh air breaks are discriminatory, as all human beings need and deserve to have fresh air and daylight time out side of locked faciility.
12. patients shall have dignity restored via housing rooms within the locked institution. single occupant rooms shall be available on appropriate gender wing, by patient choice, for patient safety. dignity shall be restored to patients via proper mattresses to gain appropriate sleep for recovery, walls shall be painted if graffiti exists on walls in room upon admit.
13. patients shall be provided with shoes upon admit, hair brushes, and personal use items shall be provided upon admit.
14. treatment appropriate therapists shall be provided to each patient based on individual treatment plans, acknowledging trauma, PTSD, PDD/Aspergers/autism and patient ability to communicate. therapists in a variety of settings, such as outside dog therapy, art therapy with professional trained in PTSD/trauma recovery, gardening therapy on property garden setting patient maintained, with one to one staff if necessary. all patients deserve to have psychological therapy provided to them above and beyond medication based treatment.
15. patient shall be discharged with all appropriate support in place prior to discharge, and that shall contain, case management, job placement opportunity, volunteer work opportunity, one to one staff support paid by state for patient to reside in residence of choice , including home with family. one to one staff shall be provided 24 hours per day for patient upon discharge if needed to reside in residence of choice, support shall be provided to prevent further hospitalizations, which is at minimum cost effective, and at maximum, dignified care in an undignified mental health system.
---
"you forgot i am human"
--December 2009, said by my daughter while residing inside a state institution, ordered for care against her choice by a superior court judge.
"i am not pissed at you, i am pissed at what happened to me"
--December 2009, said by my daughter while residing in a state institution, ordered for care against her choice by a superior court judge.
my daughter was placed in a seclusion room to sleep for her own safety per an assaultive female patient roommate. there are no single occupant rooms available, thus the use of seclusion room, which is located directly in the male wing of the ward. that makes a lot of sense. let's place a basically non verbal, defenseless patient with one that has already assaulted 2 people in a room to sleep, decide to move her for her own safety to a single occupant room that is a seclusion room in the male wing of the ward. no further commentary is needed for that.
2. the state shall provide gender specific wards to patients based on religious and or cultural needs.
3. the state shall provide gender specific wards to patients based on choice/preference.
4. the state shall, acknowledge patients right to reside in a safe environment, and without gender specific wards and single occupant rooms as a choice, they are not acknowledging patient civil liberties.
5. the state shall provide, one to one staff care for patients who are at risk for sexual assault, creating a safe environment within the one that exists. if the existing environment is not conducive to patient safety, from sexual or physical assault, the state shall provide care off property and accommodate the patient in all areas, paid for by the state.
6. the state will stop ignoring duel diagnosed patients. patients with PDD/Aspergers/Autism and psychotic features shall have gender specific wards with accommodations per their needs, for communication, based on ability to communicate, that being said, technology for communication via computer programs and audio talk boxes, calendars, etc shall be provided for patient to use to communicate needs.
7. patients who are non verbal shall be acknowledged via offering opportunities to patient equal to that of their peers, not assuming lack of speech means lack of interest in activities.
8. professionally trained speech therapists shall be provided to patients who fit the need.
9. patients who are non verbal shall have individual plan of treatment, patient will be offered a phone call to family or friend once or more per day, dialed by staff, and followed through by staff to ensure patient has opportunity to speak to person of choice, as based on patient rights listed by the hospital. *some patients will speak to certain people only
10. if safety of patient or appropriate accommodations cannot be ensured, met, achieved or enforced, within the institution, the state shall provide care elsewhere in a least restrictive setting, paid for by the state, in an appropriate setting for the patient, via patient choice.
11. patients will be acknowledged for outside time for fresh air as a non smoker. the need for daily fresh air breaks should not be subject to smoking patients only. all patients shall have mandatory fresh air breaks 2 times a day minimum 15 minutes, with no level needed. levels used for fresh air breaks are discriminatory, as all human beings need and deserve to have fresh air and daylight time out side of locked faciility.
12. patients shall have dignity restored via housing rooms within the locked institution. single occupant rooms shall be available on appropriate gender wing, by patient choice, for patient safety. dignity shall be restored to patients via proper mattresses to gain appropriate sleep for recovery, walls shall be painted if graffiti exists on walls in room upon admit.
13. patients shall be provided with shoes upon admit, hair brushes, and personal use items shall be provided upon admit.
14. treatment appropriate therapists shall be provided to each patient based on individual treatment plans, acknowledging trauma, PTSD, PDD/Aspergers/autism and patient ability to communicate. therapists in a variety of settings, such as outside dog therapy, art therapy with professional trained in PTSD/trauma recovery, gardening therapy on property garden setting patient maintained, with one to one staff if necessary. all patients deserve to have psychological therapy provided to them above and beyond medication based treatment.
15. patient shall be discharged with all appropriate support in place prior to discharge, and that shall contain, case management, job placement opportunity, volunteer work opportunity, one to one staff support paid by state for patient to reside in residence of choice , including home with family. one to one staff shall be provided 24 hours per day for patient upon discharge if needed to reside in residence of choice, support shall be provided to prevent further hospitalizations, which is at minimum cost effective, and at maximum, dignified care in an undignified mental health system.
---
"you forgot i am human"
--December 2009, said by my daughter while residing inside a state institution, ordered for care against her choice by a superior court judge.
"i am not pissed at you, i am pissed at what happened to me"
--December 2009, said by my daughter while residing in a state institution, ordered for care against her choice by a superior court judge.
my daughter was placed in a seclusion room to sleep for her own safety per an assaultive female patient roommate. there are no single occupant rooms available, thus the use of seclusion room, which is located directly in the male wing of the ward. that makes a lot of sense. let's place a basically non verbal, defenseless patient with one that has already assaulted 2 people in a room to sleep, decide to move her for her own safety to a single occupant room that is a seclusion room in the male wing of the ward. no further commentary is needed for that.
Saturday, December 26, 2009
presence
christmas day the hospital gave her gifts. clothes and treats and a card she read out loud to us when we visited her. the theme of the card was faith and a journey.
--
--
Thursday, December 24, 2009
crescent moon left, open sky right
crescent moon left, open sky right
take the next exit to freedom
---
christmas eve. the first year of my life without a Christmas tree in my presence, yet there is one where my youngest resides tonight.
--
when i stood in the outdoor area this past Monday, i leaned forward and to my left, and i could see the slim, and beautiful crescent moon.
i thought, remember this when you get home, so you'll know which way she is facing when looking out the windows. for my own selfish comfort, to look up at the sky in the evening, and know where she is, from where i stand.
--
Wednesday, December 23, 2009
angels in our countryside
Angels we have heard on high ,
Sweetly singing o’er the plains.
---
as we sat together this past monday, while waiting for the transport ambulance to take her to the institution, i started to sing this song. she sang back to me, most of the words. when she arrived at the institution, and once the paperwork was sorted out, she was rolled into the ward while still on the gurney.(not strapped down, just reclining)
there was, the Christmas tree. she admired the tree, and then it was admit time.
--
earlier
as i drove and followed the ambulance for nearly an hour, it was a dark and cloudy day and thought to myself, "where is the sun that always breaks through the clouds wherever she is?" it happens that way, always.
--
in the admit room
"you have brought the sun with you", the admit doctor said to her. the sun had suddenly filled the room, and she was illuminated by the light in her chair. it happened, and she sat there looking like an angel.
--
Merry Christmas.
you look amazing
when i arrived she was sitting in the dining area coloring. i nearly had to take a double-take, because she looked, as i told her when she walked over to me, "amazing!". i have not seen her look so well in a very long time, her hair brushed and up in a pony tail, fresh clothes on and a shining face, she was content and continued to color away while we sat together in the visiting room. i brought her a soda and cookies, which she ate while coloring. she loves art and that has always been an outlet, and one staff working with her brought these in for her and there she went, the first time in months and months that i've seen her color and look so good. hot meals, and good care, so far it's far above my expectations, and actually better than the last hospital. keep the faith, ---it's going OK.
Tuesday, December 22, 2009
gratitude
i am overwhelmed at the support, encouragement, love and concern expressed from so many people from around the world for my daughter. thank you, from my heart, it is so appreciated. i have received so many thoughtful comments and post dedications and emails that i just wanted every one to know how much it means to me and uplifts me. to know so many people are keeping my daughter in their heart and thoughts is humbling, and truly lifts my weary soul. it has been exhausting the last 24 hours, today my daughter was eating lunch when we got there, which was a great relief to me to see her having hot food served to her in a civilized eating situation, and the staff that are keeping her safe via one to one care are good, she was moving about and getting the feel for the place and we did catch a smile or two from her, candy bars and potato chips were a hit. one day at a time. when i didn't think i could get out of bed one more time and do the grueling day filled with agony, it is accomplished by forging ahead. one step at a time, puffy eyes and a tired body, you just go. the anxiety and grief at times felt crippling, but the focus remains on my daughter and you just move. people have often asked me how i do it, and that's it. you take a reprieve when you can, like walking the dog. it's not comfortable, last night and when i woke up this morning it was that feeling of something is wrong, like a death happened. you forge ahead. somehow, that sun still rises and sets and you just keep going. it's important for everyone to know this, it is possible to survive times that often feel so overwhelming you don't know how it will turn out. but, the next day always holds a chance for a new beginning, a new way, a better way.
Monday, December 21, 2009
i hope she knows i love her
the call came while i was driving home this morning at 11.45am after visiting her. i asked the person if they were aware of the court's request/recommendation she was not to be moved until after Christmas and her birthday. "yes, we are aware of it, the doctor is aware of it", the man said. but they were moving her anyway.
"don't let the ambulance leave without me i am following it to the institution so i can be there when she arrives", i said.
i felt my face flush, i raced toward an exit on the freeway and turned around and returned to the hospital. i found my daughter and asked for a side room, and told her "we are having a meeting about the changing of your hospital, it's happening now". she followed me in the room and we sat there and i told her "i won't give up. you don't give up either." earlier, and thankfully she was smiling and ate 2 egg rolls, chocolate milk, and a candy bar.
by 1pm or so the gurney rolled out of the elevator door, and the crew were the ones who brought her there, so they treated her kindly. they drove slowly so i could remain behind her the entire way.
---
a long way from home
i saw the stone wall the patients made on one side and the cemetery on the other. my hands gripped the steering wheel.
my head began to pound with an extraordinary headache, an all-encompassing agony washed over my body, i felt ill. the ambulance/admit entrance to the brick institution dated back to 1871 looks like a loading dock. the gurney was rolled into a wired fenced area, and my daughter was on that gurney.
--
there is an outdoor patio lined with wrought iron fencing, and the air blew across my face and i took a deep breath, and watched her as she stood there looking through the bars, she reached her hand out into the open air, and she started to sob.
-----
God, have mercy, compassion. Be with my daughter.
--
and me.
Sunday, December 20, 2009
this is your golden moment
standing at the window next to our little table, the view became part of an extraordinary event. "look, there she is!", i exclaimed. my daughter's face lit up brilliantly, as she exclaimed, "yes!, yes!", and was leaning toward the window watching her sister wave from the parking lot at the hospital yesterday.
--
"all of the negative thoughts are on the back burner now, for this one golden moment is yours to live, live in this moment." i said to her as we sat and ate salami and cheese and crackers, pickles and olives, and chips. all of her favorite snacks, and shared with her sister.
this was a glorious moment for me too. i won't forget how she looked, the pure JOY she had and the smile that one staff member said, "have never seen on her before".
she ran from the window to the elevator anxiously waiting for it to open, and when it did she hugged her sister for the longest time. at that very moment, the hospital psychologist who had testified against her in court (using negative chart comments and statements such as "delusional, weird behavior") , walked out of the other elevator and witnessed this golden moment. that person's face held a smile i have never seen before too.
yesterday's golden moment is one i hope sustains my daughter through the next few weeks. they ate together and played catch with a squiggly koosh ball her sister gave her.
---
live in the moment, i did, and i am savoring it.
--
"all of the negative thoughts are on the back burner now, for this one golden moment is yours to live, live in this moment." i said to her as we sat and ate salami and cheese and crackers, pickles and olives, and chips. all of her favorite snacks, and shared with her sister.
this was a glorious moment for me too. i won't forget how she looked, the pure JOY she had and the smile that one staff member said, "have never seen on her before".
she ran from the window to the elevator anxiously waiting for it to open, and when it did she hugged her sister for the longest time. at that very moment, the hospital psychologist who had testified against her in court (using negative chart comments and statements such as "delusional, weird behavior") , walked out of the other elevator and witnessed this golden moment. that person's face held a smile i have never seen before too.
yesterday's golden moment is one i hope sustains my daughter through the next few weeks. they ate together and played catch with a squiggly koosh ball her sister gave her.
---
live in the moment, i did, and i am savoring it.
Friday, December 18, 2009
ceiling at my feet
TWO years ago, this was my view. the place that held my thoughts and my advocacy. this was the floor of the old mental health court building. my daughter's gurney passed over these tiles many times.
late november, 2009 i sat gazing down at the view where my shoes grounded me, i heard a man screaming. he was removed by the security guard.
that morning, i sat on the old wooden bench at the train station on my way to a celebration of some one's birthday.
that morning, i sat on the old wooden bench at the train station on my way to a celebration of some one's birthday. --
life represents a spectrum, and shades of grey are the places where most people never look.
--
somewhere between 3AM and 6AM
somewhere between three and six a.m.
i lost myself.
i came back again.
somewhere between three
and and six a.m.
i found an abyss.
i wasnt broken this time
i was lost.
somewhere between three and six a.m.
i tried to imagine myself
again
tears reminded me of who i am.
i am lost
lost.
somewhere between 3 and 6am
i came back again.
-me, may 9, 2008
---
i am the grey tile, the woman
in the mirror.
Thursday, December 17, 2009
a shining star upon the highest bough
as i walked along i could see the Christmas tree farm on the right side of the path. across the way is an old church building. through these wild blackberry brambles you can see a glimpse of the Christmas trees growing, row by row, each standing as a representative of a future memory for someone in their lifetime.
i stopped and took this photograph today using the black and white option/feature on my cell phone. i placed my phone back in my pocket and continued the lovely walk.
below, is an excerpt from one of my favorite books, and one i recommend reading this month. it's a wonderful book, about a nun who gives her life time friend, Tree to everyone to admire as a Rockefeller Christmas tree.
i think there is a certain magic that takes place while looking at lights on Christmas trees. a magic that gives a heart or mind a certain peace and hope that is often needed, and of course joy.
"I'm not a sentimental man, but when I saw her standing there, under the Christmas tree at Rockefeller Center, I started to cry.
She was not a young woman; in fact, she was fairly old. But her eyes stayed fixed on the star at the top of the tree with the curiosity and amazement of a child who has just discovered something new and wonderful. With her bright, bony face barely poking out of her black habit she looked like a little bird next to that giant tree. Only later would I understand exactly what lay behind the sparkle in her eyes, what it all meant to her.
Her name was Sister Anthony, and she was a friend of mine."
---
Excerpt from
The Christmas Tree, by Julie Salamon and Jill Weber
--
click on the photograph to enlarge for viewing
---
From my blogosphere friends, a glimpse of their Christmas trees. If you have a photo of your tree this year, or any other special decoration please leave me a comment and I will gladly link to it. Thanks to all who are sharing! Enjoy!
Noe Noe Girl's tree
Herrad's tree
Andrew's tree
Morton's lights
i stopped and took this photograph today using the black and white option/feature on my cell phone. i placed my phone back in my pocket and continued the lovely walk.
below, is an excerpt from one of my favorite books, and one i recommend reading this month. it's a wonderful book, about a nun who gives her life time friend, Tree to everyone to admire as a Rockefeller Christmas tree.
i think there is a certain magic that takes place while looking at lights on Christmas trees. a magic that gives a heart or mind a certain peace and hope that is often needed, and of course joy.
"I'm not a sentimental man, but when I saw her standing there, under the Christmas tree at Rockefeller Center, I started to cry.
She was not a young woman; in fact, she was fairly old. But her eyes stayed fixed on the star at the top of the tree with the curiosity and amazement of a child who has just discovered something new and wonderful. With her bright, bony face barely poking out of her black habit she looked like a little bird next to that giant tree. Only later would I understand exactly what lay behind the sparkle in her eyes, what it all meant to her.
Her name was Sister Anthony, and she was a friend of mine."
---
Excerpt from
The Christmas Tree, by Julie Salamon and Jill Weber
--
click on the photograph to enlarge for viewing
---
From my blogosphere friends, a glimpse of their Christmas trees. If you have a photo of your tree this year, or any other special decoration please leave me a comment and I will gladly link to it. Thanks to all who are sharing! Enjoy!
Noe Noe Girl's tree
Herrad's tree
Andrew's tree
Morton's lights
Tuesday, December 15, 2009
standing alone in no man's land
the elevator door opened this morning and i walked out and held out the bag. donut, marshmallows, peppermint bark chocolate....she leaned toward me from my left. i think about it and it's always that way. it's my left arm that reaches out and i grip her with every ounce of my being as i talk. "hey you, how did you sleep, let's walk to the window". she leaned toward me. received the hug. as we walked i gave her the bottled chocolate milk and the wax paper bag of her favorite snacks. i was directed to move to another side of the room, the maintenance crew needed to do their job, during the one hour designated for visitors in the morning 5 days of the week. she drifted away.
--
"i guess i will stand here, in no man's land where the floor is dry in between spaces"., i said to the staff, as i stood there in the middle of two spaces that are the only ones designated for visiting.
the 6X6 space held me, i remained there. i looked to the right it was the hall and to the left and then behind me the window and before me the window. 360 without even turning around. shuffle along and be well, you are never going to get out of here.
--
you are never going to get out of here.
--
"i guess i will stand here, in no man's land where the floor is dry in between spaces"., i said to the staff, as i stood there in the middle of two spaces that are the only ones designated for visiting.
the 6X6 space held me, i remained there. i looked to the right it was the hall and to the left and then behind me the window and before me the window. 360 without even turning around. shuffle along and be well, you are never going to get out of here.
--
you are never going to get out of here.
More antipsychotics treatment options emerge, a glimpse from William Glazer
Antipsychotics in the pipeline
-------
Behav Healthc. 2009 Jun;29(6):20-1.
More treatment options emerge.
Glazer WM.
Glazer Medical Solutions, Key West, Florida, USA. glazmedsol@aol.com
PMID: 19655578 [PubMed - in process]
More treatment options emerge: iloperidone received FDA approval last month.(ANTIPSYCHOTICS)
By William M. Glazer Behavioral Healthcare - June, 2009
Glazer writes :
"Since I last wrote about antipsychotics in development in the December 2007 issue,(1) some important changes have occurred. Here is an update on what recently has been FDA approved, what might be next in line, and what to keep an eye on.
Recently approved
Iloperidone. In my previous article, I predicted that asenapine and iloperidone were "next at bat" for FDA approval. On May 6, Vanda Pharmaceuticals, Inc., announced FDA approval to market iloperidone (Fanapt), a mixed dopamine [D.sub.2]/serotonin 5-[HT.sub.2a] receptor antagonist--an atypical antipsychotic--for the treatment of persons with acute schizopherenia.
In a 593-patients, 4-week trial leading to FDA approval, iloperidone matched ziprasidone (Geodon) in improving symptoms, and both drugs were significantly better than placebo. The recommended target dose range is 12 to 24 mg/day.
Forbes noted that the FDA's decision 10 months after the agency demand the medication "not approval may be evidence of "an easier FDA."(2) Forbs reported that Sandy Walsh of the FDA explained that "Vanda provided the FDA with additional data and arguments that let us to reinterpret results of several of their studies, thus convincing the agency that there was sufficient data to support an approval action based on the existing clinical trials." Speculation has arisen about improved chances for FDA approval of Wyeth's antipsychotic bifeprunox which, like iloperieone, has good safety profile but questionable efficacy and seemed doomed.
Next in line approval?
Asenapine. Schering-Plough's asenapine has been moving along in the FDA regulatory process, and the company is hopeful that approval may occur by the end of the year. Asenapine is a serotonin and dopamine (5HT/D2) antagonist like other available agents in the second-generation antipsychotic class, such as clozapine, risperidone (Risperdal), olanzapine (Zyprexa), quetiapine (Seroquel), ziprasidone, and paliperidone (Invega).
Schering-Plough has released recent information about asenapine, notably a report on its effectiveness in bipolar disorder. In essence, the clinical trial data suggest that the drug will treat acute schizophrenic and bipolar symptoms, and the risks of metabolic problems seem low.
If approved, asenapine will be introduced as a fast-dissolving sublingual tablet, which helps to eliminate the possibility of patients "cheeking" the medication and spitting it out when unobserved. Asenapine would enter a crowded field of second-generation antipsychotics, and the early signals that we get from clinicians ultimately will determine its market success.
Sertindole. Sertindole was the subject of an F DA advisory panel review in April, which voted to recommend FDA approval for sertindole (Serdolect) to treat schizophrenia but only for a subgroup of patients yet to be defined. The advisory group reviewed trials from the sponsor involving more than 10,000 patients.
The panel's hesitancy about this compound stems in part from studies showing that patients taking sertindole were more than 4 times as likely to die suddenly compared with risperidone.Nevertheless, expert reviewers felt that the compound should be available as a treatment option. Sertindole is manufactured by Lu nd-beck and currently marketed in other countries. My guess is that this drug will be a welcomed tool for the treatment of patients with nonresponsive or refractory forms of schizophrenia.
Long-acting antipsychotics.
Long-acting antipsychotics are underutilized tools for treatingschizophrenia in the United States.' Janssen'slong-acting Consta (risperidone) has not caught on as much as it should have since its release several years ago. Now two more long-actingsecond-generation antipsychotics are getting close to release for clinical use.
Janssen's paliperidone palmitate and Lilly's olanzapine pamoate are headed for approval in the FDA review process, and it is expected that both agents will be available by the end of the year. The entry of two long-acting injectable antipsychotics will be welcomed, not only because they will fill a clinical need but also because the companies' marketing efforts undoubtedly will raise awareness among clinicians about the huge problem of treatment non adherence in populations with psychotic illnesses.
Further down the line
Lurasidone. This compound is a 5-[HT.sub.2]/[D.sub.2] antagonist but, unlike others in this class, it appears to have "a unique receptor binding profile with high affinity at the 5-[HT.sub.7] receptor site," according to Antony Loebel, MD, vice-president of clinical development at Dainippon Sumitomo Pharma. This binding activity may mean that the agent has a unique effect on cognition. Thus far, both the safety and efficacy data look promising--there is little weight gain or other adverse metabolic effects.
In addition to standard efficacy and safety measures, the company has been focusing its studies on the compound's cognition-improving aspects. Cognitive defects are common in schizophrenia, and there is a huge need to find medications that can improve defects in this area. Lurasidone has been compared to ziprasidone in a 3-week, double-blind trial and according to Emory University's Philip Harvey, PhD, the lead author on the trial, the results are "close to favoring lurasidone" in the area of cognitive functioning. The company also is comparing lurasidone to risperidone. The company is expected to initiate the review cycle with the FDA in December.
In development
I'm hopeful about two "un-dopamine" antipsychotics.
Pimavanserin. This is an interesting compound because it works differently than any FDA-approved antipsychotic. According to Herbert Meltzer, MD, a professor of psychiatry and pharmacology at Vanderbilt University and a consultant to its developer, ACADIA Pharmaceuticals, Inc., pimavanserin is a selective 5 [HT.sub.2a] inverse agonist--an antagonist that also blocks endogenous basal activity
in the area of the serotonin 2a receptor. Thus, while it does not directly affect dopamine receptors, it has powerful effects on dopamine, glutamate, and GABA release through blockade of the stimulatory effects of dopamine on the affinity to neurons that release these key neurotransmitters.
Pimavanserin has been tested so far in patients with Parkinson's disease-related psychosis, where it blocked delusions and hallucinations more so than placebo, and as an add-on to a subeffective dose of risperidone in patients with schizophrenia. The results from the latter trial were quite encouraging, as it enabled the subeffective dose (2 mg/ day) to work more rapidly and with fewer side effects than a full dose of risperidone (6 mg/day).
ACADIA is looking for a licensingpartner for pimavanserin. If progress occurs, then this compound would be an exciting one to watch.
LY2140023 monohydrate. This compound, described in my previous article, has run into "inconclusive" results according to its developer, Eli Lilly and Company. In March, the company announced that LY2140023, which works through nondopaminergic glutamate mechanisms, failed to beat placebo in a phase II 4-week trial that involved 393 completed patients. Interestingly, olanzapine, used as an active comparator, also failed to beat placebo. Thus, the developers were faced with an unusually robust placebo response, which is thought to be a function of the study's design and methods. Lilly announced its intention to continue to develop this medication for clinical use, so it is possible that it one day could be the first approved antipsychotic that does not have a dopaminergic mechanism of action."
To contact Dr. Glazer, call (508) 645-9635 or e-mail glazmedsolo@aol.com.
References
(1.) Glazer WM. What's in the pipeline., Behav Health 2007;27(12):19-21. www.behavioral.net/glazer1207.
2.) Herper M. Is the FDA easing up? Forbes.com. May8, 2009.222.forbes.com/2009/05/07/fdavanda-trials-business-health-care-antipsychotics.html.
(3.) Glazer WM. The depot paradox. Behav Healthc 2007;27(5):44-6. www.behavioral.ner/glazer 0507.
BY WILLIAM M. GLAZER, MD
William M. Glazer, MD, is President of Glazer Medical Solutions in key West.
Florida, and Menemsha. Massachusetts.
He is a clinician researcher, lecturer, and consultant, and he has been a member of the faculty in the Department of Psychiatry at both Yale and Harvard.
He is a Contributing Editor to the Best Practices column in Psychiatric Services and was selected as one of 2007's Best Doctors in America.
Dr. Glazer has served as a consultant to Eli Lilly and Company.
Schering-Plough, and AstraZeneca.
-------
Behav Healthc. 2009 Jun;29(6):20-1.
More treatment options emerge.
Glazer WM.
Glazer Medical Solutions, Key West, Florida, USA. glazmedsol@aol.com
PMID: 19655578 [PubMed - in process]
More treatment options emerge: iloperidone received FDA approval last month.(ANTIPSYCHOTICS)
By William M. Glazer Behavioral Healthcare - June, 2009
Glazer writes :
"Since I last wrote about antipsychotics in development in the December 2007 issue,(1) some important changes have occurred. Here is an update on what recently has been FDA approved, what might be next in line, and what to keep an eye on.
Recently approved
Iloperidone. In my previous article, I predicted that asenapine and iloperidone were "next at bat" for FDA approval. On May 6, Vanda Pharmaceuticals, Inc., announced FDA approval to market iloperidone (Fanapt), a mixed dopamine [D.sub.2]/serotonin 5-[HT.sub.2a] receptor antagonist--an atypical antipsychotic--for the treatment of persons with acute schizopherenia.
In a 593-patients, 4-week trial leading to FDA approval, iloperidone matched ziprasidone (Geodon) in improving symptoms, and both drugs were significantly better than placebo. The recommended target dose range is 12 to 24 mg/day.
Forbes noted that the FDA's decision 10 months after the agency demand the medication "not approval may be evidence of "an easier FDA."(2) Forbs reported that Sandy Walsh of the FDA explained that "Vanda provided the FDA with additional data and arguments that let us to reinterpret results of several of their studies, thus convincing the agency that there was sufficient data to support an approval action based on the existing clinical trials." Speculation has arisen about improved chances for FDA approval of Wyeth's antipsychotic bifeprunox which, like iloperieone, has good safety profile but questionable efficacy and seemed doomed.
Next in line approval?
Asenapine. Schering-Plough's asenapine has been moving along in the FDA regulatory process, and the company is hopeful that approval may occur by the end of the year. Asenapine is a serotonin and dopamine (5HT/D2) antagonist like other available agents in the second-generation antipsychotic class, such as clozapine, risperidone (Risperdal), olanzapine (Zyprexa), quetiapine (Seroquel), ziprasidone, and paliperidone (Invega).
Schering-Plough has released recent information about asenapine, notably a report on its effectiveness in bipolar disorder. In essence, the clinical trial data suggest that the drug will treat acute schizophrenic and bipolar symptoms, and the risks of metabolic problems seem low.
If approved, asenapine will be introduced as a fast-dissolving sublingual tablet, which helps to eliminate the possibility of patients "cheeking" the medication and spitting it out when unobserved. Asenapine would enter a crowded field of second-generation antipsychotics, and the early signals that we get from clinicians ultimately will determine its market success.
Sertindole. Sertindole was the subject of an F DA advisory panel review in April, which voted to recommend FDA approval for sertindole (Serdolect) to treat schizophrenia but only for a subgroup of patients yet to be defined. The advisory group reviewed trials from the sponsor involving more than 10,000 patients.
The panel's hesitancy about this compound stems in part from studies showing that patients taking sertindole were more than 4 times as likely to die suddenly compared with risperidone.Nevertheless, expert reviewers felt that the compound should be available as a treatment option. Sertindole is manufactured by Lu nd-beck and currently marketed in other countries. My guess is that this drug will be a welcomed tool for the treatment of patients with nonresponsive or refractory forms of schizophrenia.
Long-acting antipsychotics.
Long-acting antipsychotics are underutilized tools for treatingschizophrenia in the United States.' Janssen'slong-acting Consta (risperidone) has not caught on as much as it should have since its release several years ago. Now two more long-actingsecond-generation antipsychotics are getting close to release for clinical use.
Janssen's paliperidone palmitate and Lilly's olanzapine pamoate are headed for approval in the FDA review process, and it is expected that both agents will be available by the end of the year. The entry of two long-acting injectable antipsychotics will be welcomed, not only because they will fill a clinical need but also because the companies' marketing efforts undoubtedly will raise awareness among clinicians about the huge problem of treatment non adherence in populations with psychotic illnesses.
Further down the line
Lurasidone. This compound is a 5-[HT.sub.2]/[D.sub.2] antagonist but, unlike others in this class, it appears to have "a unique receptor binding profile with high affinity at the 5-[HT.sub.7] receptor site," according to Antony Loebel, MD, vice-president of clinical development at Dainippon Sumitomo Pharma. This binding activity may mean that the agent has a unique effect on cognition. Thus far, both the safety and efficacy data look promising--there is little weight gain or other adverse metabolic effects.
In addition to standard efficacy and safety measures, the company has been focusing its studies on the compound's cognition-improving aspects. Cognitive defects are common in schizophrenia, and there is a huge need to find medications that can improve defects in this area. Lurasidone has been compared to ziprasidone in a 3-week, double-blind trial and according to Emory University's Philip Harvey, PhD, the lead author on the trial, the results are "close to favoring lurasidone" in the area of cognitive functioning. The company also is comparing lurasidone to risperidone. The company is expected to initiate the review cycle with the FDA in December.
In development
I'm hopeful about two "un-dopamine" antipsychotics.
Pimavanserin. This is an interesting compound because it works differently than any FDA-approved antipsychotic. According to Herbert Meltzer, MD, a professor of psychiatry and pharmacology at Vanderbilt University and a consultant to its developer, ACADIA Pharmaceuticals, Inc., pimavanserin is a selective 5 [HT.sub.2a] inverse agonist--an antagonist that also blocks endogenous basal activity
in the area of the serotonin 2a receptor. Thus, while it does not directly affect dopamine receptors, it has powerful effects on dopamine, glutamate, and GABA release through blockade of the stimulatory effects of dopamine on the affinity to neurons that release these key neurotransmitters.
Pimavanserin has been tested so far in patients with Parkinson's disease-related psychosis, where it blocked delusions and hallucinations more so than placebo, and as an add-on to a subeffective dose of risperidone in patients with schizophrenia. The results from the latter trial were quite encouraging, as it enabled the subeffective dose (2 mg/ day) to work more rapidly and with fewer side effects than a full dose of risperidone (6 mg/day).
ACADIA is looking for a licensingpartner for pimavanserin. If progress occurs, then this compound would be an exciting one to watch.
LY2140023 monohydrate. This compound, described in my previous article, has run into "inconclusive" results according to its developer, Eli Lilly and Company. In March, the company announced that LY2140023, which works through nondopaminergic glutamate mechanisms, failed to beat placebo in a phase II 4-week trial that involved 393 completed patients. Interestingly, olanzapine, used as an active comparator, also failed to beat placebo. Thus, the developers were faced with an unusually robust placebo response, which is thought to be a function of the study's design and methods. Lilly announced its intention to continue to develop this medication for clinical use, so it is possible that it one day could be the first approved antipsychotic that does not have a dopaminergic mechanism of action."
To contact Dr. Glazer, call (508) 645-9635 or e-mail glazmedsolo@aol.com.
References
(1.) Glazer WM. What's in the pipeline., Behav Health 2007;27(12):19-21. www.behavioral.net/glazer1207.
2.) Herper M. Is the FDA easing up? Forbes.com. May8, 2009.222.forbes.com/2009/05/07/fdavanda-trials-business-health-care-antipsychotics.html.
(3.) Glazer WM. The depot paradox. Behav Healthc 2007;27(5):44-6. www.behavioral.ner/glazer 0507.
BY WILLIAM M. GLAZER, MD
William M. Glazer, MD, is President of Glazer Medical Solutions in key West.
Florida, and Menemsha. Massachusetts.
He is a clinician researcher, lecturer, and consultant, and he has been a member of the faculty in the Department of Psychiatry at both Yale and Harvard.
He is a Contributing Editor to the Best Practices column in Psychiatric Services and was selected as one of 2007's Best Doctors in America.
Dr. Glazer has served as a consultant to Eli Lilly and Company.
Schering-Plough, and AstraZeneca.
BMJ: Dr. Aubrey Blumsohn: Academic who took on industry
Dr. Aubrey Blumsohn is a kind and sincere human being, and is someone I am proud to call my friend, and author of the great blog Scientific Misconduct. Read Dr.Blumsohn's recent post HERE.
----
Published 15 December 2009, doi:10.1136/bmj.b5293
Cite this as: BMJ 2009;339:b5293
Feature
Interview
Aubrey Blumsohn: Academic who took on industry
"Aubrey Blumsohn forfeited his job after going public with concerns about access to Procter and Gamble’s research data on the osteoporosis drug risedronate. Clare Dyer talks to him about his experience."
"Scientists since Galileo have realised you can’t be a scientist without data," observes Aubrey Blumsohn. It seems a statement of the obvious, but he welcomes the General Medical Council’s recognition in the case of Richard Eastell, the former colleague whom he reported to the GMC, that "data" mean raw data, not summary data produced by a drug company’s in-house statistician.1 2
That recognition, he believes, vindicates the stand he took when he fought US based Procter and Gamble (P&G) Pharmaceuticals, which refused him access to the raw data for research Professor Eastell and he were leading on the company’s osteoporosis drug risedronate between 2002 and 2005.
His determination eventually forced the company to release the data in 2006, but it cost him his job as senior lecturer in metabolic bone medicine at Sheffield University and led him to abandon his career as a clinical researcher. "
--
Dr. Blumsohn is a personal hero of mine, someone who leads the way in setting an example of never giving up.
--
Via PharmaGossip, who titles Aubrey as "PharmaGossip's "Person of the Year 2009"!--I agree!
----
Published 15 December 2009, doi:10.1136/bmj.b5293
Cite this as: BMJ 2009;339:b5293
Feature
Interview
Aubrey Blumsohn: Academic who took on industry
"Aubrey Blumsohn forfeited his job after going public with concerns about access to Procter and Gamble’s research data on the osteoporosis drug risedronate. Clare Dyer talks to him about his experience."
"Scientists since Galileo have realised you can’t be a scientist without data," observes Aubrey Blumsohn. It seems a statement of the obvious, but he welcomes the General Medical Council’s recognition in the case of Richard Eastell, the former colleague whom he reported to the GMC, that "data" mean raw data, not summary data produced by a drug company’s in-house statistician.1 2
That recognition, he believes, vindicates the stand he took when he fought US based Procter and Gamble (P&G) Pharmaceuticals, which refused him access to the raw data for research Professor Eastell and he were leading on the company’s osteoporosis drug risedronate between 2002 and 2005.
His determination eventually forced the company to release the data in 2006, but it cost him his job as senior lecturer in metabolic bone medicine at Sheffield University and led him to abandon his career as a clinical researcher. "
--
Dr. Blumsohn is a personal hero of mine, someone who leads the way in setting an example of never giving up.
--
Via PharmaGossip, who titles Aubrey as "PharmaGossip's "Person of the Year 2009"!--I agree!
angels in our midst
sitting on a shelf are a few things my daughter gave me as gifts for my birthday and christmas years ago. she and i share this month as a birthday month. i told her yesterday when i visited her that i will bring her a big piece of cake on her birthday and we will eat cake together. this garden statue of a cherub holding a bunny is one of those gifts. she was always the most creative gift giver, she would wrap things up with lots of ribbon and find silly joke presents--like the time she gave me paper toilet seat covers because we had been on a road trip and used just about every single public bathroom known to mankind. she placed whoopee cushions under the chair pads at the kitchen table on a regular basis. she has one of the most generous hearts, that you'd ever know.Monday, December 14, 2009
the rising sunset
she hugged me when i walked out of the elevator she was there waiting. i have found out her clozaril level has been nearly doubled and they added 600mg of trileptal (oxcarbazepine). i really need to emphasize that i hope she hangs onto life in so many ways, spiritually and her body--this is now 1/2 of her lifetime on these antipychotics and more. she was writing all of her numbers and things out onto a newspaper and one sentence i picked out in the mix was "the rising sunset". i think she has it correct. the sun always rises and this description of a rising sunset is a beautiful image in my mind, because most people think of the sun going down, she has it rising, maybe as a continual thing of beauty. it's how i felt when i read it anyway. i wrote her a note on the paper that said, "you are a great, kind and compassion-filled person". she read it out loud and placed a pillow case on her head like a headress. i told her she looked like a nun.
Trileptal/oxcarbazepine
Body as a Whole: Fever, malaise, pain chest precordial, rigors, weight decrease.
Cardiovascular System: Bradycardia, cardiac failure, cerebral hemorrhage, hypertension, hypotension postural, palpitation, syncope, tachycardia.
Digestive System: Appetite increased, blood in stool, cholelithiasis, colitis, duodenal ulcer, dysphagia, enteritis, eructation, esophagitis, flatulence, gastric ulcer, gingival bleeding, gum hyperplasia, hematemesis, hemorrhage rectum, hemorrhoids, hiccup, mouth dry, pain biliary, pain right hypochondrium, retching, sialoadenitis, stomatitis, stomatitis ulcerative.
Hemic and Lymphatic System: Leukopenia, thrombocytopenia.
Laboratory Abnormality: Gamma-GT increased, hyperglycemia, hypocalcemia, hypoglycemia, hypokalemia, liver enzymes elevated, serum transaminase increased.
Musculoskeletal System: Hypertonia muscle.
Nervous System: Aggressive reaction, amnesia, anguish, anxiety, apathy, aphasia, aura, convulsions aggravated, delirium, delusion, depressed level of consciousness, dysphonia, dystonia, emotional lability, euphoria, extrapyramidal disorder, feeling drunk, hemiplegia, hyperkinesia, hyperreflexia, hypoesthesia, hypokinesia, hyporeflexia, hypotonia, hysteria, libido decreased, libido increased, manic reaction, migraine, muscle contractions involuntary, nervousness, neuralgia, oculogyric crisis, panic disorder, paralysis, paroniria, personality disorder, psychosis, ptosis, stupor, tetany.
Respiratory System: Asthma, dyspnea epistaxis, laryngismus, pleurisy.
Skin and Appendages: Acne, alopecia, angioedema, bruising, dermatitis contact, eczema, facial rash, flushing, folliculitis, heat rash, hot flushes, photosensitivity reaction, pruritus genital, psoriasis, purpura, rash erythematous, rash maculopapular, vitiligo, urticaria.
Special Senses: Accommodation abnormal, cataract, conjunctival hemorrhage, edema eye, hemianopia, mydriasis, otitis externa, photophobia, scotoma, taste perversion, tinnitus, xerophthalmia.
Surgical and Medical Procedures: Procedure dental oral, procedure female reproductive, procedure musculoskeletal, procedure skin.
Urogenital and Reproductive System: Dysuria, hematuria, intermenstrual bleeding, leukorrhea, menorrhagia, micturition frequency, pain renal, pain urinary tract, polyuria, priapism, renal calculus.
Other: Systemic lupus erythematosus.
Serious dermatological reactions, including Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), have been reported in both children and adults in association with Trileptal use. The median time of onset for reported cases was 19 days. Such serious skin reactions may be life threatening, and some patients have required hospitalization with very rare reports of fatal outcome. Recurrence of the serious skin reactions following rechallenge with Trileptal has also been reported.
The reporting rate of TEN and SJS associated with Trileptal use, which is generally accepted to be an underestimate due to underreporting, exceeds the background incidence rate estimates by a factor of 3- to 10-fold. Estimates of the background incidence rate for these serious skin reactions in the general population range between 0.5 to 6 cases per million- person years. Therefore, if a patient develops a skin reaction while taking Trileptal, consideration should be given to discontinuing Trileptal use and prescribing another antiepileptic medication. http://www.rxlist.com/trileptal-drug.htm#
----
That drug was:
Added to Clozaril, one of the most deadly antipyshotics a person can be on, law requires constant blood monitoring for white blood cell count or the drug will not be dispensed. She is not epileptic, and she is not bipolar. Her dx on October 20, 2009 was PDD/Autism/Psychosis NOS. I noted her flushed rash appearance several times over the weekend and on Monday of this week. I also doubt that she was given informed consent about the drug being added to her Clozaril. I doubt they talk to her at all about anything important. They don't think she understands. I fear what the medication cocktail will turn into when she gets to the institution. Drugs are all these places do to/for people.
They don't see her declining as a result of inpatient locked up for 4 months and increase of medications. They never will, never will see her as a human being, she entered there speaking
fluidly for the first time in 3 years in August, and i made sure the doctors knew she went off of Clozaril and could finally speak. Most of them viewed her speaking to being in a ramped up psychotic break. They dumbed her down and have slowly removed her voice again.
Trileptal/oxcarbazepine
Body as a Whole: Fever, malaise, pain chest precordial, rigors, weight decrease.
Cardiovascular System: Bradycardia, cardiac failure, cerebral hemorrhage, hypertension, hypotension postural, palpitation, syncope, tachycardia.
Digestive System: Appetite increased, blood in stool, cholelithiasis, colitis, duodenal ulcer, dysphagia, enteritis, eructation, esophagitis, flatulence, gastric ulcer, gingival bleeding, gum hyperplasia, hematemesis, hemorrhage rectum, hemorrhoids, hiccup, mouth dry, pain biliary, pain right hypochondrium, retching, sialoadenitis, stomatitis, stomatitis ulcerative.
Hemic and Lymphatic System: Leukopenia, thrombocytopenia.
Laboratory Abnormality: Gamma-GT increased, hyperglycemia, hypocalcemia, hypoglycemia, hypokalemia, liver enzymes elevated, serum transaminase increased.
Musculoskeletal System: Hypertonia muscle.
Nervous System: Aggressive reaction, amnesia, anguish, anxiety, apathy, aphasia, aura, convulsions aggravated, delirium, delusion, depressed level of consciousness, dysphonia, dystonia, emotional lability, euphoria, extrapyramidal disorder, feeling drunk, hemiplegia, hyperkinesia, hyperreflexia, hypoesthesia, hypokinesia, hyporeflexia, hypotonia, hysteria, libido decreased, libido increased, manic reaction, migraine, muscle contractions involuntary, nervousness, neuralgia, oculogyric crisis, panic disorder, paralysis, paroniria, personality disorder, psychosis, ptosis, stupor, tetany.
Respiratory System: Asthma, dyspnea epistaxis, laryngismus, pleurisy.
Skin and Appendages: Acne, alopecia, angioedema, bruising, dermatitis contact, eczema, facial rash, flushing, folliculitis, heat rash, hot flushes, photosensitivity reaction, pruritus genital, psoriasis, purpura, rash erythematous, rash maculopapular, vitiligo, urticaria.
Special Senses: Accommodation abnormal, cataract, conjunctival hemorrhage, edema eye, hemianopia, mydriasis, otitis externa, photophobia, scotoma, taste perversion, tinnitus, xerophthalmia.
Surgical and Medical Procedures: Procedure dental oral, procedure female reproductive, procedure musculoskeletal, procedure skin.
Urogenital and Reproductive System: Dysuria, hematuria, intermenstrual bleeding, leukorrhea, menorrhagia, micturition frequency, pain renal, pain urinary tract, polyuria, priapism, renal calculus.
Other: Systemic lupus erythematosus.
Serious dermatological reactions, including Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), have been reported in both children and adults in association with Trileptal use. The median time of onset for reported cases was 19 days. Such serious skin reactions may be life threatening, and some patients have required hospitalization with very rare reports of fatal outcome. Recurrence of the serious skin reactions following rechallenge with Trileptal has also been reported.
The reporting rate of TEN and SJS associated with Trileptal use, which is generally accepted to be an underestimate due to underreporting, exceeds the background incidence rate estimates by a factor of 3- to 10-fold. Estimates of the background incidence rate for these serious skin reactions in the general population range between 0.5 to 6 cases per million- person years. Therefore, if a patient develops a skin reaction while taking Trileptal, consideration should be given to discontinuing Trileptal use and prescribing another antiepileptic medication. http://www.rxlist.com/trileptal-drug.htm#
----
That drug was:
Added to Clozaril, one of the most deadly antipyshotics a person can be on, law requires constant blood monitoring for white blood cell count or the drug will not be dispensed. She is not epileptic, and she is not bipolar. Her dx on October 20, 2009 was PDD/Autism/Psychosis NOS. I noted her flushed rash appearance several times over the weekend and on Monday of this week. I also doubt that she was given informed consent about the drug being added to her Clozaril. I doubt they talk to her at all about anything important. They don't think she understands. I fear what the medication cocktail will turn into when she gets to the institution. Drugs are all these places do to/for people.
They don't see her declining as a result of inpatient locked up for 4 months and increase of medications. They never will, never will see her as a human being, she entered there speaking
fluidly for the first time in 3 years in August, and i made sure the doctors knew she went off of Clozaril and could finally speak. Most of them viewed her speaking to being in a ramped up psychotic break. They dumbed her down and have slowly removed her voice again.
time for toast
each morning the physical anxiety causes me is almost unbearable. a glimpse into coping with waiting for the "any day, at any time" discharge/transfer to the state institution rips my gut, it is a gut-wrenching situation, with deep roots in angst, pain and suffering. when i sleep i often have nightmares and most nights my heart beating(pounding) wakes me up. i'll get out of bed and get a drink of water, try and deep breathe and eventually i will get back to sleep.
--
good white bread toast.
this started when the doctor left the voicemail on my cell phone the day before thanksgiving telling me he was going to recommend the institution and a court hearing to get what he wanted.
--
golden brown toast, often with an over easy egg on top with a crisp piece of bacon crumbled over the top. toast with apricot jam. toast with butter, toast with margarine. it's like bringing in the coping skills with food category 'big guns'.
the dog has even grown accustom to this recent toast with over easy eggs on top each morning. it's when the stomach churns, my hands are clammy, and my heart races. it's hits about 9am like clock work. because that's the time i get dressed to drive to arrive on time for visiting hours. then the anxiety increases when i wonder if "i will get upstairs". honest to God, do you think these people who see me visit her with a smile on my face know what it takes to get through the day as her mother? i'm typing through the anxiety attack and will get dressed, get in the car and go. i hope she's awake, i want to give her a hug and see how she is this morning.
--
good white bread toast.
this started when the doctor left the voicemail on my cell phone the day before thanksgiving telling me he was going to recommend the institution and a court hearing to get what he wanted.
--
golden brown toast, often with an over easy egg on top with a crisp piece of bacon crumbled over the top. toast with apricot jam. toast with butter, toast with margarine. it's like bringing in the coping skills with food category 'big guns'.
the dog has even grown accustom to this recent toast with over easy eggs on top each morning. it's when the stomach churns, my hands are clammy, and my heart races. it's hits about 9am like clock work. because that's the time i get dressed to drive to arrive on time for visiting hours. then the anxiety increases when i wonder if "i will get upstairs". honest to God, do you think these people who see me visit her with a smile on my face know what it takes to get through the day as her mother? i'm typing through the anxiety attack and will get dressed, get in the car and go. i hope she's awake, i want to give her a hug and see how she is this morning.
Sunday, December 13, 2009
"searching for my memories"
I did get in to see her today. this is difficult to write. she was pale physically did not look very good, her drugged eyes--dark circles under them. she was cold in appearance, had on a short sleeve scrub outfit. i am concerned with her physical health, it could be nothing and it could be the medications taking a toll, or a new med added that i am unaware of, which is what i think has happened. time will tell when i ask about it.
--
i brought the wax paper bag with powdered sugar donuts, cookies, peppermint bark candy. when the elevator door opened, she was there and hugged me with a good grip. hugging is something that she always did, and over time became skittish after those other psych ward experiences. it took a very long time to get back to that point. now i feel her grip me with these hugs and i think she is scared, and i know my daughter, she needs assurance that no one has left her. i walked her over to a table by the window and she sat down and started eating the goodies, and I said, "wow, i came here yesterday and you were sleeping!" she looked up with a happy face and smiled. you see, i don't think they tell her mom was there on days like yesterday. i always want her to know i was there, because she does worry she has been abandoned. knowing this about her in hospital settings is why i make sure she hears from me and sees me, it's like oxygen to her to know she is not alone.
---
a few things:
they've had her on "finger food" for weeks. that means the rare hot meal brought in by a delivery 1/2 before serving on weekends was not hers. she is handed a tray with that damn brown bag lunch out of the bag on a tray. i sat at a nearby table to give her space, to process this, because i knew this would confuse her and frustrate her. and it's feeling singled out without explanation. and of course the staff on duty never "know" why when i ask about the "special tray".
i'm a mother and this is part of it, they need to feed her hot meals! damn it.
---
i watched her make a pile of the bread and stuff it into her milk carton (she drank the milk) and i gently asked her if she wanted me to go get her hot food for lunch.
she leaned her body over in her chair toward me and put her head on my arm. i knew that was a yes. then she told me what she wanted.
--
words are once again, becoming fewer.
remember, mute for 3 years and she went off clozaril (became non-med- compliant) and she started talking and singing in august.
now she appears to have a new drug added, i will have to ask tomorrow. i know my daughter and lived with her on the meds for years and years and i know a drugged look when i see it.
her face is flushed, rash like, and neck skin is peeling.
--
after i went out for the take out food and came back, she ate eagerly. i said, "let's walk over and look out the window".
she started very quietly crying, and hugged me, i looked at her face and her nose started to run and it was bloody.
i kept my arm around her, and walked her to the nurses station to alert them of my concerns.
"no medical staff on the weekend".
they took her temperature and said they'd watch her.
another male nurse asked her if she was cold and went and got her a sweatshirt. the other male nurse said shes been taking them off and putting them in the laundry, and i said get her one anyway.
so the kind nurse helped her put the sweatshirt on over the scrub top as she sat in the chair next to the wall.
--
by this time, i had been there for about 2 hours or so and not wanting to over do her with input, and visiting hours were almost over--i said, "OK, keep your sweatshirt on and keep warm, and make sure to ask for water if you are thirsty, use your words."
as she sat in the chair, i saw my daughter. i wanted to bring her home, i wanted to cook her dinner, i didn't want to leave her.
--
"i am searching for my memories", she said.
i pointed to my heart and said, "i have them all right here. no worries".
"bring me a puppy".
the elevator door opened, i walked inside of it and waved goodbye to her, sitting there in that chair by the wall, in a grey sweatshirt. she smiled.
the doors closed.
--
i brought the wax paper bag with powdered sugar donuts, cookies, peppermint bark candy. when the elevator door opened, she was there and hugged me with a good grip. hugging is something that she always did, and over time became skittish after those other psych ward experiences. it took a very long time to get back to that point. now i feel her grip me with these hugs and i think she is scared, and i know my daughter, she needs assurance that no one has left her. i walked her over to a table by the window and she sat down and started eating the goodies, and I said, "wow, i came here yesterday and you were sleeping!" she looked up with a happy face and smiled. you see, i don't think they tell her mom was there on days like yesterday. i always want her to know i was there, because she does worry she has been abandoned. knowing this about her in hospital settings is why i make sure she hears from me and sees me, it's like oxygen to her to know she is not alone.
---
a few things:
they've had her on "finger food" for weeks. that means the rare hot meal brought in by a delivery 1/2 before serving on weekends was not hers. she is handed a tray with that damn brown bag lunch out of the bag on a tray. i sat at a nearby table to give her space, to process this, because i knew this would confuse her and frustrate her. and it's feeling singled out without explanation. and of course the staff on duty never "know" why when i ask about the "special tray".
i'm a mother and this is part of it, they need to feed her hot meals! damn it.
---
i watched her make a pile of the bread and stuff it into her milk carton (she drank the milk) and i gently asked her if she wanted me to go get her hot food for lunch.
she leaned her body over in her chair toward me and put her head on my arm. i knew that was a yes. then she told me what she wanted.
--
words are once again, becoming fewer.
remember, mute for 3 years and she went off clozaril (became non-med- compliant) and she started talking and singing in august.
now she appears to have a new drug added, i will have to ask tomorrow. i know my daughter and lived with her on the meds for years and years and i know a drugged look when i see it.
her face is flushed, rash like, and neck skin is peeling.
--
after i went out for the take out food and came back, she ate eagerly. i said, "let's walk over and look out the window".
she started very quietly crying, and hugged me, i looked at her face and her nose started to run and it was bloody.
i kept my arm around her, and walked her to the nurses station to alert them of my concerns.
"no medical staff on the weekend".
they took her temperature and said they'd watch her.
another male nurse asked her if she was cold and went and got her a sweatshirt. the other male nurse said shes been taking them off and putting them in the laundry, and i said get her one anyway.
so the kind nurse helped her put the sweatshirt on over the scrub top as she sat in the chair next to the wall.
--
by this time, i had been there for about 2 hours or so and not wanting to over do her with input, and visiting hours were almost over--i said, "OK, keep your sweatshirt on and keep warm, and make sure to ask for water if you are thirsty, use your words."
as she sat in the chair, i saw my daughter. i wanted to bring her home, i wanted to cook her dinner, i didn't want to leave her.
--
"i am searching for my memories", she said.
i pointed to my heart and said, "i have them all right here. no worries".
"bring me a puppy".
the elevator door opened, i walked inside of it and waved goodbye to her, sitting there in that chair by the wall, in a grey sweatshirt. she smiled.
the doors closed.
Mercy, compassion and grace
one of my first blog friends is Tenous at Best. her mom called her and told her it is time for the hospice. send them all love and hugs. she says she doesnt deal with this stuff well and worries about herself falling apart when the time comes (to fall apart and yet be stoic). i know, i understand. also, please stop by Barbz and send her some love and support. she's been a diligent advocate for her son and his care after a brain cancer has left him in permanent need of care, and now, sadly she has been diagnosed with an untreatable illness.
i also want to thank everyone here who has left me comments and who read and follow the story with my daughter in recent weeks. thanks to Noe Noe Girl and to Bore Patch for sending out some requests to their readers to keep my daughter in their thoughts. i am touched by the gesture, thank you.
Addendum:
I would also like to thank Furious Season's author, Philip Dawdy for supporting my daughter via linking to a 'round up news' post.
--
somehow, i feel this world is not as big as it seems at times, when we as strangers send out love and good thoughts to someone from around the world, there must be some part of the Universe listening, and lifting up our weary souls as a result, who seek joy and freedom from pain and suffering.
--
in the psych hospital yesterday
i approached the weekend receptionist and asked him if they collect items for the patients for christmas gifts who are there on christmas day. remember no other visitors usually cross my path in that lobby and there weren't any there then either, just building maintenance crew, not a holiday decoration, or bouquet of flowers set out. this is not a place where anyone receives comfort, not even a visitor, they could use a chapel, anything, but, you see these places are not medical hospitals, so they don't have those things. the refuge of minds filled with angst, lonely and pacing on the floor above where i stand, a wall of sort between 2 worlds.
he and 2 other men talked and discussed if they have a box to collect toys etc around somewhere, and i interrupted them and said, "no, i mean for the patients that will be here on christmas day".
silence....then "oh you mean the patients?" (YES)
it never occurred to them that i meant the people upstairs. i told/asked them to get a box in the lobby and request socks or magazines, things that are generic and allowed on the unit.
---
thanksgiving day
i was with my daughter there for 2 hours, brought her eggnog and homemade food and sat at a table with her; there were no other visitors, and no special meal.
it was the usual brown bag lunch with a sandwich and a carton of milk---i was so shocked there was no acknowledgement of the patients on such a day.
i wonder how christmas day there will be.
---
it's starting to crystallize, isn't it? the image portrayed here, of the tiled hallways, the tv's on for something to do, and the pacing of the patients to pass time...the lack of reading materials, the lack of dignity, the lack of feeling.
these people are you and me, human beings deserving of much more than they receive, after all, if they are the most vulnerable members of society, why are they treated in a way that makes them appear as throw aways?
these are the people, that deserve so much more than this.
how my daughter ended up this way often has my mind spinning, because it is the adult psychiatric system that gripped its talons into her and ruined her life.
all i can do, is try and remedy what happened, and then this summer after having such wonderful days it all changed with a blink of an eye, out of my control.
i will go again today and hope to get upstairs to hug her and give her cookies.
God, mercy, compassion and grace.
i also want to thank everyone here who has left me comments and who read and follow the story with my daughter in recent weeks. thanks to Noe Noe Girl and to Bore Patch for sending out some requests to their readers to keep my daughter in their thoughts. i am touched by the gesture, thank you.
Addendum:
I would also like to thank Furious Season's author, Philip Dawdy for supporting my daughter via linking to a 'round up news' post.
--
somehow, i feel this world is not as big as it seems at times, when we as strangers send out love and good thoughts to someone from around the world, there must be some part of the Universe listening, and lifting up our weary souls as a result, who seek joy and freedom from pain and suffering.
--
in the psych hospital yesterday
i approached the weekend receptionist and asked him if they collect items for the patients for christmas gifts who are there on christmas day. remember no other visitors usually cross my path in that lobby and there weren't any there then either, just building maintenance crew, not a holiday decoration, or bouquet of flowers set out. this is not a place where anyone receives comfort, not even a visitor, they could use a chapel, anything, but, you see these places are not medical hospitals, so they don't have those things. the refuge of minds filled with angst, lonely and pacing on the floor above where i stand, a wall of sort between 2 worlds.
he and 2 other men talked and discussed if they have a box to collect toys etc around somewhere, and i interrupted them and said, "no, i mean for the patients that will be here on christmas day".
silence....then "oh you mean the patients?" (YES)
it never occurred to them that i meant the people upstairs. i told/asked them to get a box in the lobby and request socks or magazines, things that are generic and allowed on the unit.
---
thanksgiving day
i was with my daughter there for 2 hours, brought her eggnog and homemade food and sat at a table with her; there were no other visitors, and no special meal.
it was the usual brown bag lunch with a sandwich and a carton of milk---i was so shocked there was no acknowledgement of the patients on such a day.
i wonder how christmas day there will be.
---
it's starting to crystallize, isn't it? the image portrayed here, of the tiled hallways, the tv's on for something to do, and the pacing of the patients to pass time...the lack of reading materials, the lack of dignity, the lack of feeling.
these people are you and me, human beings deserving of much more than they receive, after all, if they are the most vulnerable members of society, why are they treated in a way that makes them appear as throw aways?
these are the people, that deserve so much more than this.
how my daughter ended up this way often has my mind spinning, because it is the adult psychiatric system that gripped its talons into her and ruined her life.
all i can do, is try and remedy what happened, and then this summer after having such wonderful days it all changed with a blink of an eye, out of my control.
i will go again today and hope to get upstairs to hug her and give her cookies.
God, mercy, compassion and grace.
Saturday, December 12, 2009
Dr. Gabrielle Carlson, Pharma, CABF, and the Medicaid-ed Child
Dr. Gabrielle Carlson, Pharma, CABF, and the Medicaid-ed Child
This is a post that shows you how I research, find one piece of information and then another, and another until it shows again, how these people quoted as KOL's (Key Opinion Leaders) in print papers such as the NYTimes is a dicey subject when considering this woman's quote from the recent article in the Times, regarding Medicaid children more likely to be placed on antipsychotics:
"Maybe Medicaid kids are getting better treatment,” said Dr. Gabrielle Carlson, a child psychiatrist and professor at the Stony Brook School of Medicine. “If it helps keep them in school, maybe it’s not so bad.”--Dr. Gabrielle Carlson
---
Go to the links provided here and decide for yourself if you believe she is interested in those kids gaining an education, or if she might just be a little bit influenced by Joseph Biederman and the Pharma-Pro-drugging idealists at CABF, or even influenced by the companies themselves for pimping out some cash!
Dr. Gabrielle Carlson
http://www.hsc.stonybrook.edu/som/psychiatry/carlson_g.cfm
Training: Wellesley CollegeMedical school: Cornell University Medical SchoolMedicine internship: Jewish Hospital – St. Louis.Psychiatry: Washington University – dept. of psychiatry, National Institute of Mental Health.Child Psychiatry: University of California, LA, Neuropsychiatric Institute.
Treatment Specialties: Second opinion evaluations of child/adolescent.
Emotional and behavioral problems.
Mood/Bipolar disorder in children and adolescents, ADHD.
Research Interests: Bipolar Disorder in children and adolescents, child psychopharmacology.
http://www.nytimes.com/2007/02/15/us/15bipolar.html
Carlson was heard from before in Feb 2007 in an article in the NYTimes about the toddler REBECCA RILEY, who was found DEAD with these drugs in her system:
"Rebecca was taking Seroquel, an antipsychotic drug; Depakote, an equally powerful mood medication; and Clonidine, a blood pressure drug often prescribed to calm children."
"Bipolar is absolutely being overdiagnosed in children, and the major downside is that people then think they have a solution and are not amenable to listening to alternatives,” which may not include drugs, said Dr. Gabrielle Carlson, a professor of psychiatry and pediatrics at Stony Brook University School of Medicine on Long Island." --2007
http://www.aacap.org/cs/2010_psychopharmacology_update_institute/disclosures
2010 Psychopharmacology Update Institute
AACAP 2009 January Psychopharmacology Update Institute: Evidence-Based Treatments in Child Psychiatry
"The AACAP's 2009 Psychopharmacology Update Institute, Child and Adolescent Psychopharmacology: Evidence-Based Treatments and Beyond, chaired by Gabrielle Carlson, M.D., will take place January 23-24 at the Sheraton New York Hotel and Towers in New York, New York. "Children with serious psychiatric disorders are increasingly complex. The experts convened for this Institute have as their goal not only a review of the evidence base of important conditions, but also how to approach situations where the evidence-based treatments don't work," says Institute Chair Dr. Gabrielle Carlson.
Evidence-based psychopharmacologic treatments for serious psychiatric disorders in children and adolescents have grown considerably in the past decade. The evidence-base is comprised of studies that describe both treatments that work, and also the cost of using them. "
The AACAP 2009 January Psychopharmacology Update Institute faculty includes:
Gabrielle A. Carlson, M.D.
Advisor/Consultant: Bristol-Myers Squibb Company, Eli Lilly and Company, Otsuka America Pharmaceutical, Inc., Validus
Honorarium and Travel Expenses: American Academy of Child & Adolescent Psychiatry, Ortho-McNeil-Janssen Pharmaceuticals, Inc., Shire Pharmaceuticals, Inc.
Research Funding: Bristol-Myers Squibb Company, Eli Lilly and Company, GlaxoSmithKline, Otsuka America Pharmaceutical, Inc.
Spouse Advisor/Consultant: Eli Lilly and Company, H. Lundbeck A/S
---
Gabrielle A. Carlson, M.D., Chair, Professor of Psychiatry and Pediatrics and Director of Child and Adolescent Psychiatry, Stony Brook University School of Medicine
Boris Birmaher, M.D., Endowed Chair in Early Onset Bipolar Disease and Professor of Psychiatry, University of Pittsburgh School of Medicine
---
http://www.bpkids.org/site/PageServer?pagename=ppl_advisory
Scientific Advisory Council, CABF bpkids.org
Boris Birmaher, M.D.
Professor of PsychiatryUniversity of Pittsburgh Medical CenterWestern Psychiatric Institute and ClinicPittsburgh, PA
http://www.bpkids.org/site/PageServer?pagename=ppl_advisory
Gabrielle Carlson, M.D.
Professor of Psychiatry and Pediatrics, Director of Child and Adolescent Psychiatry, Stonybrook State University of New York
In this recent NYTimes 2009 article she is quoted as saying:
“Maybe Medicaid kids are getting better treatment,” said Dr. Gabrielle Carlson, a child psychiatrist and professor at the Stony Brook School of Medicine. “If it helps keep them in school, maybe it’s not so bad.”--Dr. Gabrielle Carlson
Further reading:
http://www.furiousseasons.com/archives/2009/12/study_medicaid_kids_get_antipsychotics_at_four_times_the_rate_of_privatelyinsured_kids.html
http://www.nytimes.com/2009/12/12/health/12medicaid.html?_r=1
http://bipolar-stanscroniclesandnarritive.blogspot.com/2009/12/another-tragic-case-of-big-pharma.html
http://bipolarsoupkitchen-stephany.blogspot.com/2009/11/to-us-fda-anti-psychotics-need.html
http://bipolarsoupkitchen-stephany.blogspot.com/2009/07/florida-fails-foster-kids-psych-drugs.html
http://bipolarsoupkitchen-stephany.blogspot.com/2009/07/rebecca-riley-dead-at-age-4-grand-jury.html
http://bipolarsoupkitchen-stephany.blogspot.com/2008/02/1999-2008-ocd-adhd-childhood-bipolar.html
This is a post that shows you how I research, find one piece of information and then another, and another until it shows again, how these people quoted as KOL's (Key Opinion Leaders) in print papers such as the NYTimes is a dicey subject when considering this woman's quote from the recent article in the Times, regarding Medicaid children more likely to be placed on antipsychotics:
"Maybe Medicaid kids are getting better treatment,” said Dr. Gabrielle Carlson, a child psychiatrist and professor at the Stony Brook School of Medicine. “If it helps keep them in school, maybe it’s not so bad.”--Dr. Gabrielle Carlson
---
Go to the links provided here and decide for yourself if you believe she is interested in those kids gaining an education, or if she might just be a little bit influenced by Joseph Biederman and the Pharma-Pro-drugging idealists at CABF, or even influenced by the companies themselves for pimping out some cash!
Dr. Gabrielle Carlson
http://www.hsc.stonybrook.edu/som/psychiatry/carlson_g.cfm
Training: Wellesley CollegeMedical school: Cornell University Medical SchoolMedicine internship: Jewish Hospital – St. Louis.Psychiatry: Washington University – dept. of psychiatry, National Institute of Mental Health.Child Psychiatry: University of California, LA, Neuropsychiatric Institute.
Treatment Specialties: Second opinion evaluations of child/adolescent.
Emotional and behavioral problems.
Mood/Bipolar disorder in children and adolescents, ADHD.
Research Interests: Bipolar Disorder in children and adolescents, child psychopharmacology.
http://www.nytimes.com/2007/02/15/us/15bipolar.html
Carlson was heard from before in Feb 2007 in an article in the NYTimes about the toddler REBECCA RILEY, who was found DEAD with these drugs in her system:
"Rebecca was taking Seroquel, an antipsychotic drug; Depakote, an equally powerful mood medication; and Clonidine, a blood pressure drug often prescribed to calm children."
"Bipolar is absolutely being overdiagnosed in children, and the major downside is that people then think they have a solution and are not amenable to listening to alternatives,” which may not include drugs, said Dr. Gabrielle Carlson, a professor of psychiatry and pediatrics at Stony Brook University School of Medicine on Long Island." --2007
http://www.aacap.org/cs/2010_psychopharmacology_update_institute/disclosures
2010 Psychopharmacology Update Institute
AACAP 2009 January Psychopharmacology Update Institute: Evidence-Based Treatments in Child Psychiatry
"The AACAP's 2009 Psychopharmacology Update Institute, Child and Adolescent Psychopharmacology: Evidence-Based Treatments and Beyond, chaired by Gabrielle Carlson, M.D., will take place January 23-24 at the Sheraton New York Hotel and Towers in New York, New York. "Children with serious psychiatric disorders are increasingly complex. The experts convened for this Institute have as their goal not only a review of the evidence base of important conditions, but also how to approach situations where the evidence-based treatments don't work," says Institute Chair Dr. Gabrielle Carlson.
Evidence-based psychopharmacologic treatments for serious psychiatric disorders in children and adolescents have grown considerably in the past decade. The evidence-base is comprised of studies that describe both treatments that work, and also the cost of using them. "
The AACAP 2009 January Psychopharmacology Update Institute faculty includes:
Gabrielle A. Carlson, M.D.
Advisor/Consultant: Bristol-Myers Squibb Company, Eli Lilly and Company, Otsuka America Pharmaceutical, Inc., Validus
Honorarium and Travel Expenses: American Academy of Child & Adolescent Psychiatry, Ortho-McNeil-Janssen Pharmaceuticals, Inc., Shire Pharmaceuticals, Inc.
Research Funding: Bristol-Myers Squibb Company, Eli Lilly and Company, GlaxoSmithKline, Otsuka America Pharmaceutical, Inc.
Spouse Advisor/Consultant: Eli Lilly and Company, H. Lundbeck A/S
---
Gabrielle A. Carlson, M.D., Chair, Professor of Psychiatry and Pediatrics and Director of Child and Adolescent Psychiatry, Stony Brook University School of Medicine
Boris Birmaher, M.D., Endowed Chair in Early Onset Bipolar Disease and Professor of Psychiatry, University of Pittsburgh School of Medicine
---
http://www.bpkids.org/site/PageServer?pagename=ppl_advisory
Scientific Advisory Council, CABF bpkids.org
Boris Birmaher, M.D.
Professor of PsychiatryUniversity of Pittsburgh Medical CenterWestern Psychiatric Institute and ClinicPittsburgh, PA
http://www.bpkids.org/site/PageServer?pagename=ppl_advisory
Gabrielle Carlson, M.D.
Professor of Psychiatry and Pediatrics, Director of Child and Adolescent Psychiatry, Stonybrook State University of New York
In this recent NYTimes 2009 article she is quoted as saying:
“Maybe Medicaid kids are getting better treatment,” said Dr. Gabrielle Carlson, a child psychiatrist and professor at the Stony Brook School of Medicine. “If it helps keep them in school, maybe it’s not so bad.”--Dr. Gabrielle Carlson
Further reading:
http://www.furiousseasons.com/archives/2009/12/study_medicaid_kids_get_antipsychotics_at_four_times_the_rate_of_privatelyinsured_kids.html
http://www.nytimes.com/2009/12/12/health/12medicaid.html?_r=1
http://bipolar-stanscroniclesandnarritive.blogspot.com/2009/12/another-tragic-case-of-big-pharma.html
http://bipolarsoupkitchen-stephany.blogspot.com/2009/11/to-us-fda-anti-psychotics-need.html
http://bipolarsoupkitchen-stephany.blogspot.com/2009/07/florida-fails-foster-kids-psych-drugs.html
http://bipolarsoupkitchen-stephany.blogspot.com/2009/07/rebecca-riley-dead-at-age-4-grand-jury.html
http://bipolarsoupkitchen-stephany.blogspot.com/2008/02/1999-2008-ocd-adhd-childhood-bipolar.html
a poignant part of the prosecuting testimony
the prosecuting team (the hospital psychologist that showed up with all of the negative charts) as part of the description of my daughter that at times had me in tears because of the way they coldly talk about her as such a non-person. "delusional, weird and bizarre behavior, appearing to be pre-occupied in her mind". my daughter's attorney objected to the "pre-occupied in her mind" statement because he defended her to say no one can understand another persons mind and what is in it.
one of the last chart notes the prosecution noted was a doctor's order in the chart last monday the 7th: "if patient refuses blood draw use force".
my heart sank. i drove her to her blood tests monthly at at times weekly when required for the last 2 years. i took her to the place that knows her (the lab) where they work with her veins that are scar tissued from a decade of blood work for depakote levels, lithium levels and clozaril levels. they are calm, kind and caring. they will often fill a medical glove with warm water and place it on her veins to plump them up, anything to make the draw for her easier. it is always painful for me to watch her sit there and grimace. but they take their time, and afterward i would take her to 31 flavors. now, i think about how i did see her on the 7th and how they woke her up to tell her i was there to visit. she came out and her eyes were swollen, and she had a blood test band aid on her arm. first thing i thought, was how did they do that when she was sleeping? on the 9th i hear the chart notes read in court, and you can imagine the respect i have for a doctor who orders "force" for the blood test. if they asked me, i could tell them about her scar tissue, or about the warm water glove, or how she needs to be hydrated first. "use force", what a sickening thought, and my daughter is in that doctor's care. makes me sick.
--
the next thing that was in the last chart notes for the testimony was that "she brought a drawing she did in art group to the nurses station. it had the word "frustrated" written on the drawing, and when she handed it to the person she pointed to herself."
i cried. they don't care about my brilliant daughter, they don't love her.
--
her word "frustrated" could be used for me right now. i have just gotten back home after going to visit her and they wouldn't let me upstairs because they said she was sleeping. it was 11.20am and i know lunch was to be served soon, and told them i would wait, because they surely will wake her up for lunch. i went to the parking lot and the weekend reception person (who calls the floor and they tell him to "key me up" or not) came out a few minutes later and said he called back upstairs and asked them if they were intending on waking her up. they told him NO. so my friend and i drove to a shopping plaza nearby (remember at this point we are 30 miles--40 minutes away from home) to wait to call again. weekend hours are until 2pm so i hoped she woke up...i phoned directly to the floor station and they told me an hour later that she was still sleeping.
so the decision then is to wait and wait and they can still tell us no, or go home, so reluctantly we drove home. it's such a power struggle there. so many people don't have visitors and they make it VERY hard to see my daughter. it's been a source of immense anxiety every day before i go see her, knowing i walk the gauntlet and standing their waiting for the "yes or no" to get upstairs. sometimes, certain staff will let me up anyway, and some will tell her if she is asleep mom is here with lunch or cookies and my daughter pops right up out of bed and hugs me when she sees me. i don't like to use the word hate, but i really do hate this system. mental illness patients are treated so poorly and the family members---maybe they gave up. maybe the system beat them down too. it's hard to decompress after a morning like this. i brought the wax paper bag with cookies and holiday candy in it back home. they would place it in a locked closet where she doesnt know to ask for it. so i will return tomorrow and try again.
--
i wish i had my daughter's drawing, instead it was used against her in court and it's in their file. there is something wrong about that isn't there? they used visits with me against her too, like the ONE time in all of these months she was agitated and hit my shoulder--and they dragged her off to the seclusion room and made me leave---they read that chart note out loud too. they also said she kicked me which is a lie, not true--so i blurted out in court "no one kicked me!" and i was admonished for speaking out of turn, without being asked to speak. i don't care i know they heard me.
--
if anyone wonders what it's like having someone in a mental hospital, trust me it isn't like having someone in a medical hospital. it's horrible, and it feels like prison.
one of the last chart notes the prosecution noted was a doctor's order in the chart last monday the 7th: "if patient refuses blood draw use force".
my heart sank. i drove her to her blood tests monthly at at times weekly when required for the last 2 years. i took her to the place that knows her (the lab) where they work with her veins that are scar tissued from a decade of blood work for depakote levels, lithium levels and clozaril levels. they are calm, kind and caring. they will often fill a medical glove with warm water and place it on her veins to plump them up, anything to make the draw for her easier. it is always painful for me to watch her sit there and grimace. but they take their time, and afterward i would take her to 31 flavors. now, i think about how i did see her on the 7th and how they woke her up to tell her i was there to visit. she came out and her eyes were swollen, and she had a blood test band aid on her arm. first thing i thought, was how did they do that when she was sleeping? on the 9th i hear the chart notes read in court, and you can imagine the respect i have for a doctor who orders "force" for the blood test. if they asked me, i could tell them about her scar tissue, or about the warm water glove, or how she needs to be hydrated first. "use force", what a sickening thought, and my daughter is in that doctor's care. makes me sick.
--
the next thing that was in the last chart notes for the testimony was that "she brought a drawing she did in art group to the nurses station. it had the word "frustrated" written on the drawing, and when she handed it to the person she pointed to herself."
i cried. they don't care about my brilliant daughter, they don't love her.
--
her word "frustrated" could be used for me right now. i have just gotten back home after going to visit her and they wouldn't let me upstairs because they said she was sleeping. it was 11.20am and i know lunch was to be served soon, and told them i would wait, because they surely will wake her up for lunch. i went to the parking lot and the weekend reception person (who calls the floor and they tell him to "key me up" or not) came out a few minutes later and said he called back upstairs and asked them if they were intending on waking her up. they told him NO. so my friend and i drove to a shopping plaza nearby (remember at this point we are 30 miles--40 minutes away from home) to wait to call again. weekend hours are until 2pm so i hoped she woke up...i phoned directly to the floor station and they told me an hour later that she was still sleeping.
so the decision then is to wait and wait and they can still tell us no, or go home, so reluctantly we drove home. it's such a power struggle there. so many people don't have visitors and they make it VERY hard to see my daughter. it's been a source of immense anxiety every day before i go see her, knowing i walk the gauntlet and standing their waiting for the "yes or no" to get upstairs. sometimes, certain staff will let me up anyway, and some will tell her if she is asleep mom is here with lunch or cookies and my daughter pops right up out of bed and hugs me when she sees me. i don't like to use the word hate, but i really do hate this system. mental illness patients are treated so poorly and the family members---maybe they gave up. maybe the system beat them down too. it's hard to decompress after a morning like this. i brought the wax paper bag with cookies and holiday candy in it back home. they would place it in a locked closet where she doesnt know to ask for it. so i will return tomorrow and try again.
--
i wish i had my daughter's drawing, instead it was used against her in court and it's in their file. there is something wrong about that isn't there? they used visits with me against her too, like the ONE time in all of these months she was agitated and hit my shoulder--and they dragged her off to the seclusion room and made me leave---they read that chart note out loud too. they also said she kicked me which is a lie, not true--so i blurted out in court "no one kicked me!" and i was admonished for speaking out of turn, without being asked to speak. i don't care i know they heard me.
--
if anyone wonders what it's like having someone in a mental hospital, trust me it isn't like having someone in a medical hospital. it's horrible, and it feels like prison.
floating on clouds
Claire writes the blog Life with a severely disabled child. i found this video on her blog today, it's from the Snowman. When my kids were young and even in their teens we would always watch that movie during the Christmas season. Take a few minutes to watch this magical scene and enjoy the music, it's worth it.
--
One year, my oldest daughter's high school orchestra played Walking in the air . it was a magical moment, one of many that i have had raising my kids. Now, they are all adults, but those moments are never far from my heart, small things that happen in every day life raising children--driving lessons, choir and orchestra concerts, volunteering at the food bank can be life changing.
one summer, we purchased dozens of bars of Irish Spring bath soap bars so that each client who came for food would get a bar of soap in their bag. i remember driving the car to the food bank that day and my eyes were watering from the scent of the soap bars. another memory is driving my youngest who was purchasing dog biscuits for treats with her allowance to add to the pet kibble bags she filled for senior citizens every month. i carried on her volunteer position at the humane society for a couple of years without her, once she could not do it any longer. sadly, i gave up the position, one she was so proud of, because i couldn't do it all. that was hard to do, because it felt, at the time that i was letting her go too. in essence it was a chapter in her life closing, and the memories of her life before she became disabled are in my heart, safely tucked away for her in case she asks. she did ask this summer, when she started talking again. for a short time of lucidity she even asked me if her pet rat was alive. he died 2 years ago, while she was in the hospital that time. she asked me about a horse she rode at a local riding place, he's gone too. i often wonder about my daughter and how one would pick the pieces up from a life that virtually stopped at age 17. she did go back to high school, for a short time at age 19, but that 6 months was difficult for her. she was tested at 2nd grade reading comprehension and could no longer put words into sentences. the words would be scattered all over the paper. she never forgot who she "had been before", and i think it was devastating to her. this new awakening of speaking again has been a good thing, and sad too when you think about it, she is caught in between worlds of sort, and in a way that is, the cruelest place to end up.
---
there are needs in this world, and some things that are so simple can be one, like that soap.
my daughters were and are always acutely aware of others around them, i am very proud to say they are my daughters. my youngest, has had a speed bump in life happen since august of this year, and she isn't alone.
she shares the locked psychiatric unit with other patients. some have gone onto the institution before her, some went places i won't know.
but, i do meet them again over time, as the system repeats itself over and over, with each day that passes, due to lack of quality out patient support services and housing.
in essence, this creates a family.
we are all a family, when we see each other in this system, and i talk of the patients.
i never meet their families, because sadly, it is a rare day when one comes to visit.
i see most of the families in mental health court, while they are there to testify that their family member needs to be committed. i always wish that i would see these people at the hospital, but they don't come.
---
wherever my daughter is on christmas day, the hospital she is currently at, or if they transfer her to the institution, i will be there with her.
in honor of her commitment to her community of hundreds of volunteer hours of time from age 12 until she couldn't function any longer--i want to bring all of the patients something for them to have as a gift for christmas.
this has been on my mind a lot this week, that they need socks, or a magazine . something so simple--but mostly it is love, and acknowledgment as a human being.
i hope if anything, i can give that to them all on christmas day.
golden ribbons
Thursday, November 01, 2007
golden ribbons
she took the thread, that illuminated my mind.
as silk and fine gold, she wrapped around my mind.
each pull of the golden thread broadened into ribbon.
silk and fine gold,wrapped my shoulders.
the gentle breeze brushed my face.
the ribbon wrapped itself around my heart.
in the sunlight the ribbon flowed freely around my soul.
by candlelight the ribbon wrapped around my shoulders.
she took the thread and spun it into golden ribbons that wrapped my heart and soul.
she, was golden in the sunlight.
her spirit was like a ribbon of luminescent beauty.
her spirit soft and gentle as silk and fine gold.
she wrapped around my mind.
her ribbon around my heart.
she stood in the sunlight.
her ribbons flowed in the breeze.
golden soft silk ribbons wrapped around my heart.
with the golden ribbon, she holds my heart.
the breeze flowed across my face.
my spirit held safe refuge in the arms of the weaver.
she took the thread, that illuminated my mind.
she wrapped her ribbon around my heart.
standing like a golden memory she held my heart.
i grasped the ribbon, and pulled it close.
wrapping her golden spirit around mine, I held refuge in the arms of the weaver.
the breeze brushed our faces, and the golden ribbons fluttered in the wind.
-stephany
golden ribbons
she took the thread, that illuminated my mind.
as silk and fine gold, she wrapped around my mind.
each pull of the golden thread broadened into ribbon.
silk and fine gold,wrapped my shoulders.
the gentle breeze brushed my face.
the ribbon wrapped itself around my heart.
in the sunlight the ribbon flowed freely around my soul.
by candlelight the ribbon wrapped around my shoulders.
she took the thread and spun it into golden ribbons that wrapped my heart and soul.
she, was golden in the sunlight.
her spirit was like a ribbon of luminescent beauty.
her spirit soft and gentle as silk and fine gold.
she wrapped around my mind.
her ribbon around my heart.
she stood in the sunlight.
her ribbons flowed in the breeze.
golden soft silk ribbons wrapped around my heart.
with the golden ribbon, she holds my heart.
the breeze flowed across my face.
my spirit held safe refuge in the arms of the weaver.
she took the thread, that illuminated my mind.
she wrapped her ribbon around my heart.
standing like a golden memory she held my heart.
i grasped the ribbon, and pulled it close.
wrapping her golden spirit around mine, I held refuge in the arms of the weaver.
the breeze brushed our faces, and the golden ribbons fluttered in the wind.
-stephany
Friday, December 11, 2009
the taloned grip: give her back to me
if a person is deemed a danger to self or others by an MHP (mental health professional) they can be detained against their will, desire and belief system--for 72 hours.
at that point, when the 48 hour bracket arrives they can no longer receive forced injections (medication) because they have civil liberties and rights. the patient is given a piece of paper that asks to check off a 'box' of yes for meds or no for meds. my daughter was given a forced injection of haldol deconate within that 72 hour time bracket, therefore the hospital broke the law and no one fucking cares.
--
that was in august of 2009
---
in december of 2009
the mental health judge deemed my daughter a probable victim of society, not a danger to self and not a danger to others.
the hospital psychologist agreed and because there is no housing in this state for my daughter that will take her as she is, she is being sent to the state institution.
this is wrong, and no one will listen.
at that point, when the 48 hour bracket arrives they can no longer receive forced injections (medication) because they have civil liberties and rights. the patient is given a piece of paper that asks to check off a 'box' of yes for meds or no for meds. my daughter was given a forced injection of haldol deconate within that 72 hour time bracket, therefore the hospital broke the law and no one fucking cares.
--
that was in august of 2009
---
in december of 2009
the mental health judge deemed my daughter a probable victim of society, not a danger to self and not a danger to others.
the hospital psychologist agreed and because there is no housing in this state for my daughter that will take her as she is, she is being sent to the state institution.
this is wrong, and no one will listen.
a love poem
by RUMI:
Like this
If anyone asks you
how the perfect satisfaction
of all our sexual wanting
will look, lift your face
and say,
Like this.
When someone mentions the gracefulness
of the nightsky, climb up on the roof
and dance and say,
Like this.
If anyone wants to know what "spirit" is,
or what "God’s fragrance" means,
lean your head toward him or her.
Keep your face there close.
Like this.
When someone quotes the old poetic image
about clouds gradually uncovering the moon,
slowly loosen knot by knot the strings
of your robe.
Like this.
If anyone wonders how Jesus raised the dead,
don’t try to explain the miracle.
Kiss me on the lips.
Like this. Like this.
When someone asks what it means
to "die for love," point
here.
If someone asks how tall I am, frown
and measure with your fingers the space
between the creases on your forehead.
This tall.
The soul sometimes leaves the body, the returns.
When someone doesn’t believe that,
walk back into my house.
Like this.
When lovers moan,
they’re telling our story.
Like this.
I am a sky where spirits live.
Stare into this deepening blue,
while the breeze says a secret.
Like this.
When someone asks what there is to do,
light the candle in his hand.
Like this.
How did Joseph’s scent come to Jacob?
Huuuuu.
How did Jacob’s sight return?
Huuuu.
A little wind cleans the eyes.
Like this.
When Shams comes back from Tabriz,
he’ll put just his head around the edge
of the door to surprise us
Like this.
From ‘The Essential Rumi’, Translations by Coleman Barks with John Moyne
Like this
If anyone asks you
how the perfect satisfaction
of all our sexual wanting
will look, lift your face
and say,
Like this.
When someone mentions the gracefulness
of the nightsky, climb up on the roof
and dance and say,
Like this.
If anyone wants to know what "spirit" is,
or what "God’s fragrance" means,
lean your head toward him or her.
Keep your face there close.
Like this.
When someone quotes the old poetic image
about clouds gradually uncovering the moon,
slowly loosen knot by knot the strings
of your robe.
Like this.
If anyone wonders how Jesus raised the dead,
don’t try to explain the miracle.
Kiss me on the lips.
Like this. Like this.
When someone asks what it means
to "die for love," point
here.
If someone asks how tall I am, frown
and measure with your fingers the space
between the creases on your forehead.
This tall.
The soul sometimes leaves the body, the returns.
When someone doesn’t believe that,
walk back into my house.
Like this.
When lovers moan,
they’re telling our story.
Like this.
I am a sky where spirits live.
Stare into this deepening blue,
while the breeze says a secret.
Like this.
When someone asks what there is to do,
light the candle in his hand.
Like this.
How did Joseph’s scent come to Jacob?
Huuuuu.
How did Jacob’s sight return?
Huuuu.
A little wind cleans the eyes.
Like this.
When Shams comes back from Tabriz,
he’ll put just his head around the edge
of the door to surprise us
Like this.
From ‘The Essential Rumi’, Translations by Coleman Barks with John Moyne
Thursday, December 10, 2009
Informed consent, antipsychotics and foster kids in Illinois
As bipolar diagnoses in foster children rise, informed consent becomes a bygone-Chicago Tribune:
"Powerful mood-altering drugs were prescribed to hundreds of Illinois foster children without the required consent of state child welfare officials, a Tribune analysis of government data has found.
And increasing numbers of young wards were diagnosed with bipolar disorder and given a class of anti-psychotic medicines that some physicians consider risky for youths because they can cause such side effects as metabolic abnormalities and pronounced weight gain.
The number of Illinois wards diagnosed with bipolar disorder nearly doubled between 2000 and 2007, when roughly 9 percent of the state's nearly 16,000 wards were diagnosed as bipolar, the Tribune found."-Chicago Tribune
--
SO many of the children who were patients with my daughter in 1999 until the present were foster kids. i witnessed these children who were alone and drugged up zombies being bounced from hospitals to RTC's cry and plead for a parent to love them. this story does not only break my heart, it is a reminder of one of my goals one doctor begged of me per my advocacy:
"don't forget the foster kids".
by age 18 they are on their own , and attempting to navigate this world with mental illness labels, inpatient stays and drugs that never should have been prescribed to them.
Via Stan's blog.
"Powerful mood-altering drugs were prescribed to hundreds of Illinois foster children without the required consent of state child welfare officials, a Tribune analysis of government data has found.
And increasing numbers of young wards were diagnosed with bipolar disorder and given a class of anti-psychotic medicines that some physicians consider risky for youths because they can cause such side effects as metabolic abnormalities and pronounced weight gain.
The number of Illinois wards diagnosed with bipolar disorder nearly doubled between 2000 and 2007, when roughly 9 percent of the state's nearly 16,000 wards were diagnosed as bipolar, the Tribune found."-Chicago Tribune
--
SO many of the children who were patients with my daughter in 1999 until the present were foster kids. i witnessed these children who were alone and drugged up zombies being bounced from hospitals to RTC's cry and plead for a parent to love them. this story does not only break my heart, it is a reminder of one of my goals one doctor begged of me per my advocacy:
"don't forget the foster kids".
by age 18 they are on their own , and attempting to navigate this world with mental illness labels, inpatient stays and drugs that never should have been prescribed to them.
Via Stan's blog.
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