I agree, No shit!
I cant sleep at night knowing she is on these drugs. Ive worried since 1999 she would die from them. I wrote a research paper in 2001 regarding antidepressants and suicidal thinking, when my daughter was 13, and took that paper to the doc, and said I think we have a problem, and I see a pattern of each time she is worse, you(doc)increase the AD, and at home she is unravelling, wild, raging and screaming she wants to kill herself, which the doc listened that time, and removed the Zoloft, which then took 2 months for the "worse before better" withdrawals I saw happen to stop.(and so did the ideations) I found one remote article in 2003 when my daughter freaked out on cough syrup. Article said it was as if she took ecstasy. I took her to the reg general doc on that one, and asked him if he heard about this before, because I think that is what was happening to her, (the dexthromethophan)and did he hear of kids (teens)abusing it? like the article suggested? he said "yes". That was in 2003. When did the FDA warnings come out re:suicidal thinking? I knew first hand since 2001, from living with my daughter, and the docs would barely listen, and Ive had some stare blankly at me when I tell them she cant take things right down to Dex cough syrup. Why do parents put up with it.Well, when you have a kid with thoughts of suicide at age 11 what do you do? and where does trusting doctors come into play? How was I to know her bedwetting med was in reality an antidepressant? in 1999, I didnt know to not to trust a doc, or to link the immipramine to her thoughts. So the docs medicated those thoughts with what? more antidepressants. Took me 18 months to gather information on that and it was my own anecdotal stories that I would tell from living with her, and knowing she never acted that way before meds. Do I trust the docs now? NO. Not once, in all of these years, has one psychiatrist ever given us the paperwork that comes w the meds. I get it online or asked the pharmacist for it. Each drug she was ever on, has side effects of delusions, mood changes,hallucinations, among others. Good old Zyprexa has some fine print somewhere, that said 3 people in a study had 'schizophrenic' reactions. What?! what if that is her problem. I have so much research, and so many theories, like could she have brain damage due to these meds, and could this be why she is so 'complex'? could she now have permanent psychosis as a result? There are not meds tested on kids, because who would allow that? has this started yet? some people addressed DC asking for testing, I cant remember if anything changed on that front. When she was 11 and on melleril, risperdal and other stuff, she was sweating, pasty white, eyes rolled up in her head, in a hospital, I thought she was going to die. Those were the first days of learning slowly, not to trust docs or the meds, and yet I listened to them. Took her for help, made sure she never missed a dose of anything, all the while reading chemistry papers and figuring out why she was the way she was and connecting dots with meds. Docs dont want to hear mom's anecdotal stories. Well now, that she is legally adult, Ive spent since she was 11 staying up late trying to unravel the connection to her mood or behavior 'oddities" and now have so much information regarding meds and how she reacts to which ones, and at what doses...but they wont hear it. Now Im interfering, and in the way, a hovering mother of a legal adult. Any dose of Zyprexa over 10 mg she gets agitated, 15 made her eyes roll up, they wont listen to that now that they dont need me, the person she lived with for 18 years and 7 of those watching her on meds that I didnt prescribe, now they have her on 30 mg of zyprexa. I cant sleep for my fears of her dying. Now I look back at notes and see what she was on and can load the meds into med reaction websites and freak out about the reactions that pop up, I didnt have that back in 1999. I had my own charts, and notes, docs told me "Im the doctor". Shit theyve told me that 3 months ago when I said I have a research that shows she may not be able to go off of antipsychotics. Nope. They want to think something else emerged. They will listen to dry mouth type side effects, but they wont listen to the psychiatric ones.My daughter herself, the last month she was able to read and function before med removal did her own research at the library. Right down to how ototoxic meds that can cause hearing loss/damage, sounds that arent there, were most of her drugs she was on. She read fine print, she saw how delusions and hallucinations could be side effects, and she saw how agitation was one , and asked me "Mom is it me or the meds?". I ask that every day, and sad thing is, we may never know. Sadder thing: now that she is legal adult, they really dont want hear from me. I have a case study basically, from living with and observing her from age 11 thru 17 1/2, and you would think they would want to hear every detail about what med did/does what to her. Instead I was told to let the professionals do their work. THEY DID! They did do their work, look what happened? was it the meds? was it an emerging illness? I have my original paper I wrote re: antidepressants and suicidal thinking from 2001. FDA helped prove me right, though they knew before my daughter had to suffer. I also have a list of other meds that made her feel that way, like BuSpar. I am a resource for this patient arent I? in a world of confusing medication trial and errors, I do not understand why doctors arent calling me every day asking me for the inside scoop to what works for her and what doesnt. Instead, theyve placed her on stuff she was on before and taken off of from reactions...shit she wrote me a note that said :"Ativan" on it. She reacts paradoxically to that, why do I know? am I a doc? no, I lived with her and saw it happen, that was also in 2001.(and her doc said the word paradoxical to me) So fast forward to 2006 and she is well versed on what meds she knows make her feel like shit, and cant speak, so writes me a note. She knew.She knows. I cant sleep.How do parents let this go on? what would you have done.I cant sleep worrying about her, and how I am the one who took her for help.Look where it got her.Oh, and she was always sick,(when she was little, with pneumonia a lot,) and she ate chewable amoxicillan for years like candy from one doc, those years preceded the psychiatric ones. PANDAS? who knows. This is the hard part for someone like my daughter. She is TOO YOUNG to not be living her life, she is TOO young to say Ive been on meds since I was 11. These are defining moments, of when to have hope, when to lose hope. Worst feeling in the world, is having people tell me, as a Mother, that I need to get lost and let them do their job,when Ive seen her suffer all of these years, and see the docs retrialing meds again, and again, and again, I just dont have answers and Ive been looking for them for many years, with one goal in mind: my daughter's life. Now I sit on the sidelines, hoping they dont kill her with meds or fuck her brain up worse than it is, hoping she did have something emerging, for in someway, that would be easier to deal with, than if it turned out it was from the meds. She said it herself, the million dollar question: "is it me or the meds?". I miss her.

After picking through that article here are some points:
"We're conducting a very large experiment on our children," March says."

Ive been saying this for 7 years. The studies ARE being done. ON the kids, under the premise of getting well, right in front of the docs that see them weekly. Once, a doc remarked her eyes roll upwards on high doses of Zyprexa, because of eye muscle strain, and to take a couple of benedryl. Though it was the same reaction (ocular)she had on risperdal. I watched carefully, and so did my daughter, at what fine tuned dosages did/didnt make the what she called "my eyes go". I took her to the reg general doc and ran that past him, the first thing he did was ask what meds she was on from the psych, and he said "I think Zyprexa is the culprit." *once a school knows your child is on medications, it rules the roost. Ive been in meetings where the first thing they want to know is "is she med compliant?". I always had to book doc appts through June, even when she was doing well, because that was an underlying current in meetings with staff and officials. On days when she was raging, upset ,eyes rolled up, and I had to pick her up from school, how insulting to be asked if she took her meds. YES. (and that could be WHY Im picking her up)

"The brain system that the drugs work on develops through childhood and adolescence, says Cynthia Kuhn, a Duke University pharmacologist. "We really don't know the impact of chronically perturbing that system in childhood."

Really? DUH. They don't think a growing child could have problems?

"Also, kids with serious mental health problems often have at least one hospitalization, but policies cover only a week or two."

BIG THING TO READ HERE FOLKS. It is called PARITY. We need it! Doctors will often want to monitor in a hospital setting the daily giving of these meds, and we all know ultimately that really needs 2-4 months solid time to see if meds work. I wonder how many people have to ITA their child for extended stays, or sell their houses to pay out of pocket expenses, hell I paid into one private hospital for years, there went college tuition for everyone.
Brains are parts of our bodies, and should be treated as such, this IS a neurobiological brain disorder. There are LIFETIME caps on how many inpatient stays insurance will cover.Who made that up? here, you have 52 days to be sick in your entire lifetime.Then apply for medicaide, that's the usual scenerio.Not to mention, you also have a set amount of days to see the outpatient psychiatrist, and there are no co-pays, usually have to pay upfront, some docs we saw won;t bill insurance any longer, so we pay upfront, then mail the claim in ourselves, then get 60%back if were lucky.At 250.00 or so an hour, that is a crime in itself. For managing medications.I know some parents who just get the meds from the general practioner. Co-pays and same meds, same amount of time spent with the patient.

"The Vanderbilt study of antipsychotic prescribing finds at least 13% of pediatric prescriptions are for bipolar disorder. But there is some concern about over-diagnosis and "jumping to this (bipolar) label too quickly"

I agree. Observation over years time is best, I say that, because no psych ever saw my daughter off meds, yet placed her on cocktails from hell, started off with OCD , then it switched to bipolar, really, for no apparent reason. She left hospitals on meds combos that covered all diagnoses.(oh and once they run out of diagnoses, they just add NOS to the end of anything and tell you that these meds cover it all, so what the heck) They need to look at the brain before meds. They need to do EEGs before meds, MRI, all of it. They should think about how there are some seizures that dont appear typical, some can shoot a kid into a rage for "no apparent reason", some kids, fall asleep. Look at the brain, same way as if they checked my heart for chest pains,and I doubt they would treat me with medication until they knew I had breast cancer, why not send kids to neurologists first? society in general just end up at a psychiatrist.Even family practioners place kids on these medications.

Child psychiatrist Barbara Geller, a bipolar expert at Washington University in St. Louis, agrees: "The science is nowhere near where it is in other branches of medicine."

Really Barbara?

I wonder how many parents read that article and shook their heads, feeling screwed over and guilty at the same time. Yes, some meds help some people, that is what is wrong with this picture. This is a crisis in this country, it is time for mental health to walk out of the shadows and become a larger than life issue. It has been plaguing us for too long, too many people live miserable lives for this not to be up there with AIDS , Breast Cancer. Silence is not golden. It is sad. It is real.It is a really time for people like Tom Cruise to get off the front page addressing this shit.

I just ran across this website looking for the same answers you have, Stephany. I have a very similar situation concerning my son. I am so frustrated. I am also not "heard" by the psychiatrists etc. who think they know what they are doing. We are the ones who watch the adverse reactions to these drugs.

I will not go into detail here. Just want to know if you are still there, Stephany. We need to talk.
I think it is time to take action.

Hi Cheryl,
Yes, I am still here. Since I posted that long post, my daughter is out of hospitals, and attempting at age 18 to complete high school.
She has limited cognitive ability now. She was a 4.0 honor student, and now struggles to read Winn Dixie dog book.

The best way to get docs to listen to you is to make 3x5 cards of each med the child is taking. Make short notes per dose/per day/ per mood or behavior changes.
Use the word "observe" rather than "I think".

I have had some docs say "im the doc" and I have had some docs say "this is remarkable information".
Get to the doc that thinks the information is worth listening to...ditch the ones that hang onto the "Im the doc" attitude.
They are all learning from our kids medss trials and the good doc will admit that to you and ask your input. In the end, it helps them do their job more accurately, and one I work with re: my daughter loves the information I bring in.
Good luck
Stephany

I think the most visible and best form of action to take are the faces of the children themselves.
Some, like my daughter are now adults. The impact of seeing these kids in person (like a million kid march in DC) would be astounding.

Re-reading my first post here it ends with these words:

"I miss her."

I wrote that when she was still in a psych ward.

She is home now, and I still miss her. She's not the same.

Don't give up.