And I am disheartened.

This week I was asked to speak on a health panel for parents blogging about their kids with health issues and I declined.  Why?  Well, anonymity for one.  But more to the point, I am not an expert.   I guess it’s true you could say I am a health activist (it was a health activism group).  Kind of.  I am a parent who blogs.  I blog about our experiences to keep track.  I blog to journal.  I blog for fun.  And for an outlet.  I blog to think out loud.  I blog to hold myself accountable.  To check myself that I am always working in the best interest of my child.  And I blog to let people know that raising a bipolar child can be fun.  And wonderful.  And these kids have a lot to offer the world, given the right treatment and environment.  But I don’t blog to advise (although I have given advice in other blogs’ comments section but I’m not going to do that anymore for reasons I’ll list below).  When Rye is a grown man and self sufficient and stable and happy, I will be in a place to give advice on raising a bipolar child.  But not now.  We aren’t there yet.  Nowhere near it.

Now, I will say that unlike the average blogger, I do have a very experienced pdoc in my immediate family.  So in addition to Rye’s pdoc (who is great and also extremely experienced) and our family doc, I do get better than average advice.  And I feel very fortunate for this.  I get great insight into what it is like [the inner workings of the brain] to be manic, depressed, psychotic, etc.  And daily if I need it.  Hourly, if I need it.  So that helps.  A lot.  A whole lot.  And I have learned so much that I never would have known or been aware of otherwise.  And honestly, I don’t think Rye would be as stable as he is today without this.  But I, myself, am not an expert.

In my reading I’ve learned that what is ok and acceptable for one family will not be for another.  And this is why advice is a tricky game.  For one family, it might be ok for their child to go in an out of psychosis and threaten suicide as long as they are happy the next day. This may just all be a part of ‘it’ for them.  For another family, it may be ok for their young child to be endlessly hospitalized and adjusted on new meds and continue to hope and pray that psychiatric hospitals will heal them.  And never look for another option or consider another scenario.  For another, it may be ok to subject their young child to clinical trials for psychiatric medicines even though there is no known evidence that said meds will work and no guarantee that the meds, if they do get them, won’t cause permanent damage to their child’s body and their child’s mind.  Because after all, there is no research on the meds, hence the study.

But for me?  For us? For our family?  For Rye?  No way.  If my child is having times of distorted reality, I am not ok with that.  I feel the need to fix that. That is no way to live if it can be helped (which I realize it can’t always and that is a different matter).  If my child is in a psychiatric hospital, I do not ever believe that that hospital will heal my child.  Ever.  Psychiatric hospitals do not heal children.  They keep them safe temporarily but can also often do more harm than good.  Ask my son – he’s been twice.   If my child needs meds, I am going to go with the ones that have been studied, if possible.  The ones that have known good results and won’t try many others until those options have been exhausted (learned my lesson on that one with Abilify which has only been studied for a few weeks and almost caused my son permanent tics).   I was reading recently on one blog about a child who has spent the good part of the past few years in and out of psych hospitals for bipolar disorder and now the child expressed an external desire in the hospital to kill himself and kill another child.  And everyone is shocked.  I don’t understand why they are shocked.  At all.  They take this as a sign of how mentally ill he is and that this is an expression of his bipolar disorder.  But it is?  Maybe.  I can tell you though with certainty that if I spent ages 5-7 or so  constantly scared and institutionalized, in and out of psych hospitals and on varying psych meds so my mind was all over the place and with no end in sight because every time I freaked out my mom hospitalized me, I would want to kill myself and someone else too.  Seems to me this shows the kid is more sane than insane.

I’ve also noticed that many bloggers confuse symptoms of one diagnosis for another.  For example, confusing the symptoms of autism spectrum disorders with the symptoms of bipolar disorder. These two disorders are nothing alike and yet I see people blogging that the symptoms that their children have from Asperger’s, for example, are due to bipolar disorder.  And professing the truth of this.  No, no, and no.  This is all wrong.   Autism spectrum disorders and bipolar disorder, although they may coexist, are not the same.  At all.  Not at all the same.

Anyway, I could go on and on but I would say read blogs for fun.  Read blogs for enjoyment.  Read blogs to hear people vent and learn from other people’s mistakes.  Learn from my mistakes.  And when asking for advice or seeking guidance, consider your source.  Bloggers are not experts.  I am not an expert.  Not by a long shot.  Bloggers are simply parents sharing their experiences.  And although there can be great value in this,  if the person you are seeking guidance from has a child that is 6, or 7, or even 10 – anything before puberty hits -  and they are just beginning their journey, these folks don’t have much experience yet.  Don’t let the blind lead the blind.  My son is only 13 and I don’t have a lot of experience yet.  We have been at this for 7 years and I consider myself to be an amateur.  So take it for what it is.  I know nothing, really.

Take the best and leave the rest.

And last but not least,  always be leary of anyone trying to make a name for themselves from their children’s illnesses before their children are old enough to give proper legal consent and tell their side of the story as an adult who realizes the long-term ramifications of what they are doing. Honestly, I don’t care if I ever get one more comment on this blog, ever, for saying this but it’s just creepy for a child that may ever live independently to have their right to privacy regarding mental health issues violated on a global scale by their own parents.

Would you want your parents to do that to you?

____________

I’ll admit, because we do not watch much television I had no idea this show was on until I read about it on the internet.   And my first thought when I saw that the show was coming on was, What happened to HIPPA and Children’s Right To Privacy?  I really don’t understand why these apply to insurance companies, schools, medical facilities, correction facilities and the court systems but not to the internet and social media.

Anyway, on to the show.   I did not watch the whole show.  I did, however, watch all of the clips available on Oprah’s  website (www.oprah.com) and read the transcripts that are available.

What did I think?

Well, wow.  I’m not really sure what to think.  The show itself was a bit unclear to me as to what Zach’s actual diagnosis is and what the family is doing to help him until I read this.  This is a comment posted by the mom, Laurie, in reaction to some comments on one of the clips:

Posted: Sat 2/19/2011 5:42 PM

LaurieFerris : This is Zach’s mom. I’d like to clarify a few things. He was diagnosed with Sensory Integration Disorder, Severe ADHD, Unspecified Mood Disorder and Tourette’s. Zach was on a variety of psychotropic drugs in the early years which for the most part did not help. He has been off of all medications for the past year and 1/2. We are strong believers in alternative and holistic approaches to helping these children besides using drugs. Proper nutrition, exercise and limited exposure to television, computers and violence are also important. The reason he is living away from home with me is so that he can attend a special school that utilizes alternative approaches such as energy work, yoga, vegetarian diet, meditation etc. to help him with his attention and focus issues, which are also greatly improved. The tics are a result of his Tourette’s, and they are actually much milder than they used to be several years ago. What has helped Zach the most has been “energy work” that he has done for the past two years with an extraordinary counselor who taught Zach to shift his thoughts from negative to positive ones. We believe that Zach is an “energetically sensitive child” and that he has great potential to do wonderful things in the world as long as he stays positive and in the light. Thanks to all who have taken the time to post comments on Oprah’s site.. For more information, you can contact me on facebook at SavingZach or at laurie@energeticallysensitivechild.com.

http://www.oprah.com/oprahshow/An-Explosive-Child-Learns-How-to-Cope-Video

So,  Zach was having terrible rages, was violent towards the mom (hence the title of a 7 year old trying to kill his mom), destructive towards the house, etc., etc.  A fairly typical story of an unstable child with a mood disorder.  And especially typical of a child with other brain impairment issues/autism spectrum issues in addition to a mood disorder.  I guess they tried psychiatric medicines and those didn’t work like they wanted [remember, these medications are made for adults, not children, so this often happens - and often times the medications that don't work well on children work really well on those same individuals as teens and adults].  Mom now feels like Zach has holes in his memory due to the meds he took [note: this memory loss could be from the psychosis itself which can cause periods of blackout] and that the meds impaired his learning so they only want to use natural, alternative methods to heal him.  They now rely on Zach (still a child) using visualization techniques and encasing himself in white light to protect himself from the ‘creepy’ voices that tell him to do bad things [voices that can morph into the same voices as his parents and caregivers which adds a complex dimension to trying to shut them out].

Interesting.

In agreement with Laurie, I would argue that all bipolar children and/or autistic and/or spectrum children are “energetically sensitive”.  No doubt about it.  These kids are more in tune with the energies around them and the emotions of those around them than anyone other than them can even imagine.   And this is why it is so incredibly important how one parents these kids and why the environments they are in on a daily basis are so important.   That said,  no child can live in a bubble.  And no parents can be perfect.  And no school can be perfect.  And no environment can be perfect and perfectly stress free.  And Laurie herself admits that Zach used to rage for hours literally no reason at all.  So how is one to control that?

For them, they say a special school, a special diet, no computers, no tv, yoga, mediation, and visualizing the white light are the answer.

Does this seem dangerous to me?  Yes.  Will it work in the long term?  Only time will tell.  It is my personal opinion that leaving a psychotic child’s fate in his own hands and counting on his ability to be able to outsmart and/or out think his mental illness is not an option. After all, prisons, residential treatment centers and psychiatric care facilities are full of people that have tried to do this.  Is it ideal to hope that he can control his own mental illness?  Yes.  Do I understand where mom and dad are coming from in not wanting to use psychiatric drugs with many side effects on their son?  Absolutely. We have been there and did just that.  We took our son off of medications for years from 6-12 years old with success [that said, our son's behaviors were not anywhere near as extreme as Zach's at that age and our son was not hearing voices].  And it worked for us until puberty hit.

As he is still young yet and has not hit the teen years and early adulthood, I think we have not heard the end of the story with Zach.

When I watched Oprah interview Zach and watched her really press him about the voices he hears, poor Zach seemed to be really struggling.  He was extremely tense and did not seem ‘calm and relaxed’ at all, in my opinion.  And he seemed to have a lot going on in his head.  It made me wonder what the voices were saying to him at that moment and I felt really bad for him.  I then felt even worse when Oprah talked about how he is such a positive kid with such good positive energy and how sometimes she interviews really bad, negative people in prison.  People who have tried to kill people.  People who have killed people.  Wait…you mean like Zach?  After all, he is on the show for trying to kill his mom.  He hears voices that tell him to do really bad things.  Things so bad he won’t share with Oprah (or probably anyone else, for that matter) what they say.  And don’t think for a minute that Zach didn’t pick up on that.  These kids are smart as whips.  As are their voices.

Herein lies the danger of these interviews.

Anyway, I wish the best for Zach and his family and I hope for their sake and for Zach’s sake that their chosen treatment method works for them.   We all want what is best for our children and it is true that not all children are significantly helped by psychiatric medications.  Especially ones with complex psychosis.

For us?  We are sticking to the psychiatric medications that are working for our son.  I am grateful every single day that our son is stable on the meds he takes now and he is living a great life.  And I love, love, love it that Brit came on and gave such a good message of hope for Zach and his family.   Brit has bipolar disorder and was apparently on Oprah years ago as a child for exhibiting behaviors similar to Zach.  Brit now says that due to getting a correct diagnosis of bipolar disorder and being on the right medication he is stable and happy and in college living out his dreams.  You can see the clip here:

http://www.oprah.com/oprahshow/Brits-Triumph-Over-Childhood-Mental-Illness-Video/topic/oprahshow

Brit is an inspiration and a true success story.  And I wish only the best for Zach and his family.

Carrie Fisher has a new documentary film coming out December 12, 2010 on HBO called Wishful Drinking.   In this film Carrie talks about growing up, her parent’s marriage, her career, her battle with addiction, time spent in mental hospitals, her diagnosis of bipolar disorder and the  ECT treatments she received while trying to help ease her bipolar symptoms.

The film is based on Carrie’s one woman show and from the clips I have seen so far has a highly comedic tone.

If you have HBO, check it out December 12.  If are like me and unfortunately don’t have HBO (HBO makes really great documentaries), I’m not sure when you can view it but hopefully soon thereafter it will be available for viewing elsewhere.

If you see it in the next few weeks, post a comment and let me know what you think.

You can view some preview clips here.

Thank you, Carrie, for being so open about your life and best wishes with your one woman show and the documentary!

One year ago today I wrote my first post for this blog.  I remember thinking at the time that I wanted to try and post almost every day but wondered how I would possibly think of something to say or post every day.  Oddly, it really has not been a problem.  In fact, very rarely do I even think in advance about what I’m going to post anymore.  I usually just have so much stuff rolling around in my brain that when I sit down to write, out it comes.   Anyway, in commemoration of this day I thought I would answer some questions that I have been asked  over the past year via email about us and about the blog.   Often times people don’t feel comfortable commenting on this site due to the nature of the subject matter so they just email me.  And that’s fine.   Anyway, here goes.

_______________

Q: Why do you blog?

A: I blog to keep a journal of our lives and to record the stories and events in our lives as they happen.  I blog to let people know they are not alone in raising a bipolar child and that it can be done with dignity and respect for the child.  I blog to share our ups and our downs and hopefully in doing so raise awareness of bipolar disorder in children and teens.  I blog to let people know that bipolar children and teens can be the most wonderful and creative people they will ever know and that they have a great deal to offer this world and the communities around them.  I blog to let people know that bipolar disorder affords our society some of the greatest and most interesting people we have and we should honor and respect our differences and value what these differences bring to our society.

Q: Why do you blog anonymously?

A: I blog anonymously because Rye’s story and Don, Rye’s and my family story are not mine to tell except in an anonymous format.  When Rye is old enough, he can share his own story if he wants to.  And if he never wants to, that’s fine too.  But this way he is protected.

Q: Do you believe that Early Onset Bipolar Disorder exists?

A: Yes, I do.  I believe that it is not common and I believe that it is more common in children that have a biological parent or direct relative that has bipolar disorder or depressive disorder (unipolar). I also believe that it does not always have to be medicated in the early years or even continuously medicated throughout life.  I believe it all depends on the child/teen and how much their emotions and behaviors are interfering with their quality of life, their thought processes, their safety, and the safety of those around them.

And, for people who do not believe Early Onset Bipolar exists, I challenge you to start attending some bipolar support meetings in your area and ask all of the adults there when they feel they began to deal with bipolar disorder.  Most will say in the teen years or early adulthood but many will say they have had bipolar disorder since as early as they can remember – even as a young child.   So this is not a new phenomenon.

Q: How do you feel about psychiatric medications and children?

A: I have mixed feelings about psychiatric medications in general.  And I think some are better than, more researched and safer than others.  Done correctly, the right medications can literally save a child’s life and/or their quality of life.  There is no denying that.  And we see that now with our son.  So in that respect I am for it.  That said,  I also believe that medications can be overused and have been overused in children.  Particularly young children.  I  think we often create bipolar disorder in young children by prescribing them antidepressant [SSRI] and stimulant medication too readily and at too young of an age when the child does not really need it.   I also believe, as our psychiatrist believes, that if your child has a paragraph long list of medications they are taking, at least some of the medications aren’t working and you should rethink your strategy.  Piling psychiatric medication on top of psychiatric medication is not a good treatment plan as your brain reorganizes and accommodates for every psychiatric medication it is exposed to.  Psychiatric medications all come with issues that may not be evident in the short term and the benefits as well as possible side effects and problems created by the medicines should be taken into account at all times.  And all psychiatric medications have withdrawal effects that can be dangerous if not handled with care.

Q: Do you believe in using natural healing methods for bipolar disorder?

A: Yes.  I also think that they work for some people better than others.  I think that treating bipolar disorder is not a one size fits all strategy and that the disorder exists, like everything, on a continuum.   So what works for one person may not work for another.  Also,  what works at one time in one’s life may not work in another time.  One person may be able to completely control their symptoms using natural methods while another may not.  More often than not I think it’s a blending of methods that works best.  Especially in the teen and young adult years when there is a high flux of hormones in a person’s system.  Medication combined with natural techniques is what we use with Rye.

Q: Do you believe in always listening to you child’s psychiatrist?

A: Yes, if you have a good doctor that you trust. And I believe that your relationship with your child’s psychiatrist should be a partnership so that your doctor  always listens to you as well. One aspect of a good doctor is that they are ok with being challenged and they value your opinion as a parent and are flexible.  If your doctor is not ok with being challenged and questioned and is not flexible or does not listen to your concerns regarding medications or your child, get a new one.  As a parent, always, always listen to your inner voice and know that you know your child best.  If your doctor is not working in the best interest of the child or you feel it just doesn’t ‘feel right’, it’s not right.  You are your child’s best advocate and doctors are flawed like everyone else in the world.  They are human.  They make mistakes.  They have a certain perspective and mind set they come from and they are influenced by.   Know that, accept that and work with it.  If a medicine isn’t working for my child, it’s gone.  I’m not going to wait around for it to do permanent damage to my child.   Your doctor can’t fix that once it’s done.

Q: How do you feel about psychiatric hospitals?

A: I think the treatment model used in inpatient psychiatric hospitals today in the United States is often inhumane, outdated and harmful.  I think psychiatric hospitals should only be used as a last resort as they can cause more damage than they ever help.   I’ve heard more horror stories about psychiatric hospitals than I would ever care to share.   They are not a place for healing.  And ironically teaching hospitals can often be the worst.

Q: Do you believe in therapy?

A: Yes.  I believe a good therapist can help all of us, bipolar or not.  I do not believe, however, that behavioral therapy or psychoanalysis/talk therapy in and of itself can cure or control the all of the symptoms of bipolar disorder in children and teens.  Children and teens do not have the capacity to think their way out of being bipolar and it is important to have a therapist that understands this.

Q: Do you think environment is important in controlling bipolar symptoms?

A: Yes, very much so.  Stress is a major, if not the primary, trigger for bipolar symptoms and controlling one’s environment and mitigating the stress within that environment is very important in controlling these symptoms.

Q: What’s your favorite thing about blogging?

A: It’s fun.  It’s creative.  It’s personal.  And I have met some really interesting people through it and learned a lot.  I love getting emails from people saying they like the blog and feel it’s accurate and helpful.  That’s the best part.  Well, that and looking back on all of stories, happenings, etc.  The recording of our life story.

What was good about the hospital?

• It seems to have gotten Rye out of the manic state that he was in.  He now takes 1000 mg of Depakote a day and can take Seroquel 25 mg at night as needed and from this his mind and body seem to function at a regular speed.  He is slower now and his mind seems to function with more purpose.  He now seems to want to do the right thing and make healthy choices vs. being drawn like a magnet to dangerous things and dangerous choices.  He seems to be able to think things through better and can regroup faster when he gets off course.    He is no longer on self destruct.
• It gave us all a break from the chaotic lifestyle and pressured speed we were all starting to function at to accommodate Rye.  It made Don and I realize how much we were enabling Rye to stay in a manic state and were enabling his bad choices.
• It gave us a chance to realize Rye needs a weekly therapist in addition to the psychiatrist he sees for medicines.  That he needs talk therapy once a week and med checks about once a month.  And he needs a male therapist that is pretty tough.  Someone he can’t manipulate and someone he feels comfortable talking to and whose suggestions he will listen to.
• It made Don and I realize that Rye needs much more structured time.  He is going to need to be kept very busy with structured activities.

What was bad about the hospital?

• The hospital Rye was in was exactly like a children’s version of ‘One Flew Over The Cuckoo’s Nest’.  It was all about control at any cost and there was a Nurse Ratched on every shift.  Honest to God.  A couple of these women even looked like her and had that same cold, calculated, sadistic type personality and demeanor.  Super creepy.
• Rye was never allowed outside or off the unit (which was very small to being with).  He went 2 weeks with no real exercise or outside air or any healthy, physical way for his body to move the meds through his system or to release tension and anxiety except deep breathing.
• The staff did not do any of the testing they said they were going to do.  They had him there for 10 days and the only test they did was an IQ test, which said his IQ was normal.  That was the extent of the educational testing.
• The hospital (University teaching hospital that claims to be very ‘up’ on the recent research) claims to have a behavioral based program.  This translated into the minimization of the effects of medication, no matter what the diagnosis, and blaming the child and/or parents for all behaviors the child exhibited even if the child was psychotic.   They felt a good behavior plan at home could fix everything.  And the social worker and nurses made that very clear.
• The behavior plan they utilized on the unit, however, consisted of making the child stay in their room for most of the day and punishing them if they came out when not ‘authorized’ to.  Overuse of two padded, locked rooms on the unit in which they would lock the child when they did not follow directions.  They did this to my son at least 3 different times and I saw them put a tiny 4 year old girl in there for an hour one evening and let her scream and cry the whole time simply because she would not eat her dinner – and then they were super nice to the mom the next night when she was there to visit and my guess is never told the mom about the previous evening.
• The other part of their behavior program is they PRN medicate the children whenever they don’t follow directions.   My son was almost held at the hospital an additional 3 days to monitor what they called an adverse reaction to a medication (Seroquel).  It turned out they had actually overdosed him and given him 3 times the dose they were supposed to in addtion to large doses of benadryl.  So, it wasn’t an adverse reaction.  It was an overdose.  By their staff.  And they overdosed him again the next day after the ‘adverse reaction’ as well and even added Ativan on top of it all then and kept him in his room all day so they didn’t notice that he was basically incoherant until I got there and demanded they discharge him immediately.  When I took him home on Friday it took him until Saturday to be able to form a coherant thought or conversation and until Sunday to calm down enough to resemble his real self (we stopped the Seroquel for a couple of days to let the overdose work it’s way out of his system).
• The doctors have no idea what really goes on on the unit.  Or if they do they lie when they talk to you.
• It is not a place of healing.  And the children do not receive therapy there.  It is a place of power, punishment, confinement, control, and would make any person crazy if they stayed there long enough.  In fact, I think this may be the problem with the staff.  They are a product of the environment they have created.
• I will never, ever forget the sounds of my son screaming and crying in those padded rooms (they always made sure to call me when he was in there I guess just so I could hear him in the backgound).  And I will never, ever forget the image of that tiny 4 year old girl being  dragged into that room and then being left in there to cry and scream and plead for nearly an hour.  Those sounds and images are permanently burned into my brain.  And I’m sure they are burned into the brains of all of the children on the unit as well as they all had to listen to the other kids that were in those padded rooms as the cries and pleads  resounded through the whole unit when a child was in there.

Wow.  And I guess that is enough.  I never met with a doctor in person except the original intake which lasted about 30 minutes.  We never got any positive anything from any staff member.  Ever.   [Edited to add: I take that back.  The doctor on the unit the first week was wonderful but unfortunately she left after 2 days as her residency ended.  The one the second week was bad.] When I pressed the doctor on the phone about their goal for Rye (the one from the second week), they did not have one.  They did not do any tests to rule anything out physically or physiologically that could have contributed to his issues.  I think they goal was just to keep him there as long as insurance allowed.  And then when they overdosed him, they petitioned they insurance to keep him there longer to monitor the ‘adverse’ reaction, which ironically they did nothing to stop and just kept piling on the meds until he could not even think right.   God knows how long that cycle could have gone on and how much they could have fried his brain if I had not have taken him out.

Amazingly, I don’t think the experience was a total loss.  It broke us out of our unhealthy cycle at home and got Rye’s meds to a therapeutic level.  I would not do it again, however,  unless it was a complete and utter crisis as I think it can be very traumatizing for the child.   And for the family if the family knows enough about what goes in in the hospital.

Inpatient psychiatric hospitalization for children or teens should really only be used as a complete and utter last resort.

It’s kind of a weird thing, really. 

I’m having a really hard time with it all.  It’s harder than I thought it would be.  He is at a hospital hours from home and luckily I have someone in the city Rye is in to stay with so I am able to be near him but man am I drained.   It’s hard for me to come to terms with everything.   Luckily Don is staying very calm and rational about it all and he is being very helpful.  I am so very grateful for that.

So far we don’t know anything more than when we came in last week but a new team of doctors start on his case today (it’s a teaching hospital) and Don said they are starting educational testing on him today which is wonderful.  We desperately need this testing as our school system/county has been more than negligent about doing it and he really has not been tested in many years  – they just kept updating his IEP with no relevant testing.

I am taking a break from visiting him for a couple of days.  He is really playing on my sympathy/guilt when I visit him and it is keeping me from being able to make rational decisions for him.  That is hard too.  I often wonder how we got to this point.  But then I realize that we got to where he was keeping us all in such a state of constant activity and chaos that no one had much time to think about anything.  We got to the point where all we were doing was reacting.   And it breaks my heart that I feel I can’t trust him now.  But then I just have to tell myself he is not well  and he is where he needs to be.  He has definitely become a different kid than the one I know he is when he is not struggling so much internally.   And I desperately miss the old Rye.  The real Rye.

I guess that’s it for now.   Hopefully they make progress this week so we can start to get some answers.   And I need to get some rest.

I’m fourteen, and after a recent suicide attempt overdose on Wellbutrin, I had to stay at a psych ward for ten days. They gave me Abilify for a few days, which worked, minus stomachaches. The doctors thought it was vital I got off of Abilify because of these stomachaches, and put me on Seroquel. Which has, seemingly, worked. But it really wasn’t. It tore me apart completely, and in the past week I’ve been self-mutilated again and attempted overdose twice. I stopped taking it, and I’m happier than ever.
I don’t recommend seroquel to anyone.

Shila, thank you for your comment.  You are so brave to share your experience and I’m so glad you are doing well now.  I hope you continue to do well.  Please keep me posted on your progress via comments or email.  Stay aware of your symptoms and please get help if you feel yourself sliding again.

Here’s the thing, while Antidepressants/SSRIs [ie Wellbutrin] are made to do a good thing and often do help people they can also backfire and produce highly undesirable results. My son had suicidal thoughts on Abilify (which technically is an antipsychotic but has SSRI qualities).  We did not know about these thoughts until after he was off of the medicine and could look back on it and tell us.   Shila attempted suicide on Wellbutrin and Seroquel.  These reactions, although highly undesirable, are not uncommon especially for children and teens.  As for Seroquel, I have no idea why it is advertised as or used as an antidepressant.  Seroquel is a very heavy antipsychotic that works great for some people as an antipsychotic or sleep aid but on the street Seroquel is known as baby heroin and I’m guessing there’s a reason for that.

For anyone interested in looking into possible effects of antidepressant medications, I find the website SSRI Stories, Antidepressant Nightmares to be a great resource.  It gives an easy to read, sortable spreadsheet that documents people’s negative reactions to antidepressant/SSRI medications.

And these stories are just the tip of the iceberg.  These are the very extreme reactions that make the news.  Every day there are many people who have undocumented negative reactions to SSRIs.  Often times these people don’t know the negative feelings they are having or the behaviors they are exhibiting are coming from the antidepressant they are taking and are not organic in nature so they continue to take the medication or up the dose.  Or add another one.  And this can be very dangerous.

Withdrawal from antidepressants can also be extremely difficult and dangerous.  I can write a whole post on that and will soon but suffice it to say that withdrawal from antidepressants should be done extremely slowly and with much care.   Otherwise, the withdrawal effects can be excruciating and/or lethal.

Anyway, I am glad my son is currently doing well and I am glad Shila is now doing well.  I hope they both continue to do well.

As parents, it is important to be aware of the dangers of the drugs we give our children and to give our children/teens a voice in their treatment so we can adjust the treatment accordingly.  Many of the medicines used on children and teens today can have tragic effects and although depression, psychosis, and other psychiatric symptoms are never to be ignored or taken lightly, one should also not take the use of psychiatric medicines lightly and should use them with much care and caution.

There is no ‘magic medicine’.

She wrote:

Here is a cause of psychotic behavior in teens that I was not aware of–Lyme Disease!

I am a member of an online book club that has long since evolved into more of a friends chatting kind of thing. One member has shared with the rest of us the terrible experience of her 11 year old daughter. This child began experiencing a number of mysterious physical symptoms that their doctor struggled to explain–muscle tremors, fevers, aches and pains, fatigue–test after test was negative.

Then all of a sudden, the child began experiencing extremely high levels of anxiety. She could not function in school, was terrified to leave her house, developed a number of phobias that she had never had before–a complete puzzle. It all came to a head one night when she became hysterical and could not be soothed or calmed, saying that she “saw things” and that “people were talking in her head”, screaming, crying–just a terrible situation.

With no other choice, her parents took her to the ER and from there, she ended up spending three weeks in a psychiatric unit. The little girl was given several different drugs, something for anxiety, an anti psychotic, anti depressant. As her mother put it, she didnt so much get better, but rather, got quiet. She was released.

While in the office of a neurologist, questions are asked about the child’s activities, symptoms, etc. More tests are ordered. A few days later, a CT scan reveals lesions on the front temporal lobes. Neurologist orders an MRI, and contacts a specialist in Lyme disease, says he just has a hunch.

Tests are positive. His hunch is right. The infectious disease specialist is convinced that all the psychiatric symptoms are caused by the Lyme disease and they have discontinued all the psychiatric drugs. The little girl will receive IV antibiotics for two months and I think the decision on after care is antibiotics for a year.

She has returned to school and all of her other regular activities, or as many as possible.

After hearing this story I looked up Lyme Disease and Psychosis and found the following among the many articles out there on the subject.  Apparently Lyme Disease is commonly misdiagnosed as Schizophrenia, Bipolar Disorder, Depression, and Anxiety, among other psychiatric presentations.

Title: Lyme disease: a neuropsychiatric illness.
Authors: Fallon BA, Nields JA
Source: Am J Psychiatry 1994 Nov;151(11):1571-83
Organization: Department of Psychiatry, College of Physicians and Surgeons,
Columbia University, New York.

Abstract:
OBJECTIVE: Lyme disease is a multisystemic illness that can affect the central
nervous system (CNS), causing neurologic and psychiatric symptoms. The goal of
this article is to familiarize psychiatrists with this spirochetal illness.
METHOD: Relevant books, articles, and abstracts from academic conferences were
perused, and additional articles were located through computerized searches and
reference sections from published articles. RESULTS: Up to 40% of patients with
Lyme disease develop neurologic involvement of either the peripheral or central
nervous system. Dissemination to the CNS can occur within the first few weeks
after skin infection. Like syphilis, Lyme disease may have a latency period of
months to years before symptoms of late infection emerge. Early signs include
meningitis, encephalitis, cranial neuritis, and radiculoneuropathies. Later,
encephalomyelitis and encephalopathy may occur. A broad range of psychiatric
reactions have been associated with Lyme disease including paranoia, dementia,
schizophrenia, bipolar disorder, panic attacks, major depression, anorexia
nervosa, and obsessive-compulsive disorder. Depressive states among patients
with late Lyme disease are fairly common, ranging across studies from 26% to
66%. The microbiology of Borrelia burgdorferi sheds light on why Lyme disease
can be relapsing and remitting and why it can be refractory to normal immune
surveillance and standard antibiotic regimens. CONCLUSIONS: Psychiatrists who
work in endemic areas need to include Lyme disease in the differential
diagnosis of any atypical psychiatric disorder. Further research is needed to
identify better laboratory tests and to determine the appropriate manner
(intravenous or oral) and length (weeks or months) of treatment among patients
with neuropsychiatric involvement.

http://neurotalk.psychcentral.com/thread35017.html

As well as:

http://emedicine.medscape.com/article/1168285-overview

http://www.jfponline.com/Pages.asp?AID=3887

Definitely something to checked out if your child is displaying these symptoms.

Lindsay was originally diagnosed as bipolar when she had a bad reaction to a medicine given to her for bed-wetting at summer camp.  She was diagnosed as bipolar by a doctor that spent 10 minutes with her.   And thus began her spiraling journey with psychiatric medicines.

Enclosed in the links below are some thoughts on her current situation.  It breaks my heart how she is being treated as she has been deemed to be of no danger to anyone.

http://bipolarsoupkitchen-stephany.blogspot.com/

http://www.furiousseasons.com/archives/2010/01/some_thoughts_for_western_state_hospital_dshs.html

http://bipolar-stanscroniclesandnarritive.blogspot.com/2010/01/failure-we-all-pay-for-western-state.html

As parents of children with mental health needs we must be aware of what can happen in the world of psychiatric care.  We must do what we can to ensure standards of care improve not only for Lindsay and other adults in her predicament, but also for our own children.  After all, our children may need this kind of care some day as well.

Everyone in these facilities deserves to be treated with dignity, respect and given a reasonable opportunity to heal.

- Judge Steven Leifman

Minds On The Edge is a video I saw on PBS a couple of months back and it is excellent.  I just found where you can watch it for free online so I posted the link and I highly recommend watching it.

This video is a panel discussion regarding the mental health treatment predicament in the United States, particularly for individuals over the age of 18 with Bipolar Disorder or Schizophrenia.  Despite the fact that the video does not address mental health treatment for children, all children that truly have these disorders (and are not one of the many that have been misdiagnosed) will grow up and may face the very situations considered in this discussion.  So, it’s good to be aware of what can happen to our children as they become adults unless, of course, something changes in the legal/hospital/treatment systems between now and then.

Frank Sesno is the moderator and the panel consists of the following members:

1. Stephen G. Breyer
2. Arthur Caplan, Ph.D.
3. Pete Earley
4. Frederick J. Frese III, Ph.D.
5. Avel Gordly
6. Eric R. Kandel, M.D.
7. Judge Steven Leifman
8. Estelle Richman
9. Elyn Saks
10. Thomas A. Simpatico, M.D.
11. Tracey Skale, M.D.
12. Lauren Spiro
13. Susan Stefan
14. Sam Tsemberis, Ph.D.

The bios of all panel members can be found in the Meet The Panelists side bar link.

Here is the link to the program.

http://www.mindsontheedge.org/about/program/

To watch the video simply hit the Watch button next to the About button near the top of the screen and it will link you to the correct screen.