Comments: Prevention Of Psychosis Study, Ethical or Not?
Of course I cannot be silent when I read anything w regards to Zyprexa.
"First Do No Harm". I have said that to doctor's faces, I skipped the letter writing at various points. I used that phrase a lot.
My daughter may not have been enrolled in a study but she may as well be called one now.
It just makes me cry when I read this.
I have been on the Zyprexa bandwagon since 1999. She was on doses as high as 15mg. She was only 11 years old. She often could not see, and her eyes rolled upwards and got stuck. The psych said it was a muscle problem, I read the fine print to him (ocular side effects) and went to the reg doc who said it was the Zyprexa and simple answer: benedryl. Not even Cogentin was rx back then to her. Being an honor student with her mind still in tact...she could not read. Those days were horrible. I fought the docs to lower the dose. Once at 10mg her agitation and eye issues lessened, at 7.5 even more and at 5mg nothing bothered her except the 40 lbs she gained.
Got the dose as low as 2.5mg for 6 months and she wanted to go off of it. Basically every time she tried to go off of Zyprexa she became psychotic and once catatonic in combo. I charted for years the adverse events on all doses of Zyprexa.
The worst was when she was on 30mg prescribed by a hospital in tandem with Haldol. She was very paradoxical on that. I could not believe they shot her up on 30mg of that shit. With a history of reaction on nothing higher than 15mg.
This just makes me sick. This med as well as Depakote has ruined my daughter's life. She has lost 40 lbs since being away from home and off of ZYprexa. She has been given the dx Polycystic ovarian syndrome from 6 yr depakote use, and no monitoring by pdoc re: her growing body and lack of menses. Until I read the box warning to the doc, re: monitoring this med in women under age 20. She is still only 18.
No meds she ever took were approved for use in children.
NONE.
I know, let's make it simple. Let's ban all psych meds from being dispensed to anyone under 18. That way they can just be symtomatic and suffer off meds, then make an informed decision as a legal adult to use em.
Now the pdocs just tell me "something else was going to emerge anyway".
That, is a cop-out. My daughter's life can never be given back to her. She is now what they warned me could happen. A person I won't recognize compared to who I lost.
I hope I can make a change using what I have learned. I sure intend on attempting to create a better way.
Posted by Stephany at October 18, 2006 08:44 AM
One more comment re: Mothers/Parents/Caregivers and the dispensing of psych meds to children.
Once you become pro-active, you are labeled as a person who interferes with the docs.
A small tip for any parent in this boat now and wanting to jump ship, but the docs won't back down...fire the doc, get several opinions, use the word "observed" a lot, and then, after all of that, watch out, because once you fire a doc, and get several opinions, you could end up being labeled after 7 years "a parent who stops treatment.". Yeah. What a parent has to realize is once you enter the docs world, you are a threat to their ego. Especially if you are a woman.
Good luck, it takes balls to stay in it as long as I have and guess what, I'm a girl.
Talk about a glass ceiling.
I feel this is why so many parents end up worn out and beaten down, and give up.
Do not give up.
Another lure the docs did to me as a parent in 1999:
"You are so lucky your daughter got sick when she did, the medications are superior to those in the old days."
She trialed every single "new" atypical.
She is now on Clozaril. The "old gold standard".
If the psychiatric community was a watch-dog for all antipsychotics based on the side effects alone, then we could get somewhere.
If they took diabetes and lipids and agitation all as seriously as low white blood count, then it could save a lot of heartache and trashed bodies.
The Clozaril is so strictly monitored, due to death as a side effect, that it cannot be dispensed without bloodwork results of CBC to the pharmacy that fills the order. If the lab results come back questionable, the doc cannot give the CLozaril.
Shouldnt it be this way with ALL psychiatric meds? that careful monitoring of the patient and their body on these meds?
I would like to say that after 7 years doing this, I have gotten somewhere.
I was told, that "just wait, in 10 years there will be a cure." "Just wait, in your daughter's lifetime there will be a cure, a simple bloodtest that can tell us exactly what's wrong with her (psych wise)."
Well docs, we are closing in on the 10 year mark a look what's happened.
I heard a lot of bullshit from pdocs and false promises, and their rates increased.
I am sorry to report after a 7 year quest, this Mother has nothing positive to report.
A Mother that is known for being one of the most outspoken advocates in town. What about the ones that are afraid to speak to the docs.
I am trying to blaze a trail, and I hope I live to see an outcome that is a positive one. A Decade is a long time to see no changes in docs attitudes toward medicating children.
Sorry for the long post, but this is the top of the list topic here.
Children and psychiatric medications.
Damned if you do and damned if you dont.
Posted by Stephany at October 18, 2006 10:36 AM
ZyPrexa and I have a long history.
http://alwaysonemorethingagain.blogspot.com/2006/09/zyprexa-agitation.html
Posted by Stephany at October 19, 2006 07:52 PM
I was wondering if any of you could help me with this: I can't hear. Anyone have that problem? Like when people talk to me all of a sudden I'm in my own little bubble, and I could see the person, and even absorb some of the words, but I can't make any sense of what they are saying. Nothing makes sense. That sometimes happens when I read too. I remember once when I was at the Weekly, Philip asked me to read a one page press release on the city counsel, to give him my opinion -- but I couldn't read it. It didn't make sense. And I wanted SO hard to read it! I wanted so badley to be able to give him my opinion! But the more I read it the more it didn't make sense. It was like I was watching myself read it, totally as an observer -- and therefore I coudln't understand. It was horrible! When he then asked me about it, I had to give a total generic statment... I COULDN'T let him know I even wasn't able to read the damn thing. Here I was supposed to be the brilliant and motivated intern -- and yet the simplest task I coudlnt do. So embarrsing! Does anyone have a clue as to what I'm exprieincing??? It's really like a disability. I even dropped my Honors debate class... cuase, mainly, I was SO afraid people would be debating and I wouldn't be able to hear them. For years I thought my IQ was too low to hear and read -- but that dones't sound right either. Do any of you have any idea what's wrong with me? And how I could fix it? I really need help with this.
Posted by Gwen at October 21, 2006 10:30 AM
Gwen,
This happens to my daughter a lot, most recently since June. She also is very smart, and an avid reader. She feels the same panic you express here in your post. She says I am talking and she cant hear the words, as if she has gone deaf, etc. It is frustrating, and the only advice I can give is to express this event to your doctor. In my daughter's situation, it appears when she is stressed out, receiving too much input in a conversation, alongside hearing voices from psychosis. Sorry I cant be much help here, but it is something happening to so one else, if that is any comfort.
Hang in there.
--Stephany
Posted by Stephany at October 23, 2006 08:28 AM
Thanks, Stephany. It's good to know that I'm not the only one this is happening to. It has just gotten so bad. Like, this past summer I had to take a high school correspondence history class, which invloved a lot of reading... and my mom ended up taking taking the whole class for me, becuase I just coudln't comprehend the simple, eight-grade level reading. Really bad. Anyway, thanks for your support.
By the way, how is your daughter doing?
Gwen
Posted by Gwen at October 23, 2006 10:31 AM
Gwen,
I understand what frustration you must feel not being able to read. Thanks for asking about my daughter. She is doing fairly well, though, like you are experiencing, she cannot read like she used to be able to do. She has been a college-level comprehension reader since she was 8 yrs old and now she does 8th grade level reading that comes with worksheets. Very basic. You aren't alone in this. I know it's hard, hang in there, okay?
~Stephany
Posted by Stephany at October 23, 2006 05:20 PM