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.

Oh dear.  I cannot even express to you how horrified I am by this column.  I started with his advice on Serotonin Syndrome and it went from there.  Here was my journey:

_________

Reader Question: What antidepressants help serotonin syndrome sufferers?

Dr. Raison Answer:

The answer is: Try an antidepressant that does not have appreciable serotonin activity. The most obvious choice in this regard would be bupropion (brand name Wellbutrin), an antidepressant that affects the norepinephrine and dopamine systems, but leaves serotonin untouched. Another option would be an older antidepressant called desipramine (brand name Norpramin).

My Response:

According to the Mayo Clinic, Wellbutrin can be a prime contributor to Serotonin Syndrome. As the Mayo Clinic describes:

A number of over-the-counter and prescription drugs can lead to serotonin syndrome, especially antidepressants. Illicit drugs and dietary supplements also can cause the condition. These drugs and supplements include but aren’t limited to:

• Serotonin reuptake inhibitors (SSRIs), antidepressants such as citalopram (Celexa), fluoxetine (Prozac, Sarafem), fluvoxamine, paroxetine (Paxil) and sertraline (Zoloft)
• Serotonin and norepinephrine reuptake inhibitors (SNRIs), antidepressants such as trazodone and venlafaxine (Effexor)
• Bupropion, an antidepressant and tobacco-addiction medication (Wellbutrin, Zyban)
• Monoamine oxidase inhibitors (MAOIs), antidepressants such as isocarboxazid (Marplan) and phenelzine (Nardil)
• Anti-migraine medications such as almotriptan (Axert), naratriptan (Amerge), sumatriptan (Imitrex) and zolmitriptan (Zomig)
• Pain medications such as fentanyl (Sublimaze), meperidine (Demerol), pentazocine, (Talwin) and tramadol (Ultram)
• Lithium (Eskalith, Lithobid), a mood stabilizer
• Illicit drugs, including LSD, Ecstasy, cocaine and amphetamines
• Herbal supplements, including St. John’s wort and ginseng
• Over-the-counter cough and cold medications containing dextromethorphan (Robitussin DM, Sudal DM)
• Anti-nausea medications such as granisetron (Kytril), metoclopramide (Reglan) and ondansetron (Zofran)
• Linezolid (Zyvox), an antibiotic
• Ritonavir (Norvir), an anti-retroviral medication used to treat HIV/AIDS

My bet is with the Mayo Clinic.  How about you?

__________

Reader Question:  How can I stop using Paxil without the side effects?

Dr. Raison Answer:

The good news is that only about 20 percent of patients who take antidepressants experience these type of withdrawal symptoms when they discontinue the medications, and when experienced, these symptoms are usually mild and resolve in a week or two…

But remember that most people can stop an antidepressant cold and won’t have symptoms.

My Response:

This advice is irresponsible and horribly misleading.   Antidepressants are more often than not quite hard to discontinue.  And some people never are able to discontinue.   Most people cannot stop them cold and have no symptoms.  And especially not Paxil.  Just ask all of the thousands of people at www.paxilprogress.org or Phil Lawrence who made an entire documentary film about this called Numb.  Search the internet for Effexor withdrawal or Zoloft withdrawal.  Search YouTube for video accounts.  Read the accounts of people trying to withdraw on Furious Seasons or Beyond Meds. Read accounts of people discontinuing at www.crazyboards.org

And to make someone asking for advice feel like “most people” can discontinue with no issues is unethical and immoral.  Period.

_____________

Reader Question: My son hears suicidal voices.  What can I do?

Dr. Raison Answer:

I’ve seen thousands of patients over the years, and I can assure you that the most powerful factor in good outcomes for people with serious mental illness is the commitment of family members to keep on trying…

When you do feel discouraged, try to imagine all the patients I have treated, or advised on, who had their lives turned around for the better when the right treatment for that particular patient was finally found and instituted.

My Response:

As a mom of a child who has heard voices, I feel particularly drawn to this question.  First, Dr. Raison gives no actual advice or help here but tells how childhood psychosis is uncommon and urges the writer to keep trying to get help.  This in and of itself shows the ridiculousness and dangerousness of even having these serious questions and answers in an online advice column.  Second, if your son is hearing suicidal voices and you have no treatment plan of action with your home psychiatrist, your child is in grave danger and you need to get the child to the hospital where they can be evaluated.  The voices could have an organic origin, they could be caused by medication prescribed for a psychiatric diagnosis (they mentioned ADHD in the question).  It could be a number of things.  But the child is not safe.  Dr. Raison never once says this.  The child is not safe while hearing these voices.  I know.  I’ve been there.  And you would expect a sound psychiatrist to point this out.

As for the end of his response when Dr. Raison tells the parent not to get discouraged and to think of all of the patients he has seen over the years and how they have all been helped.  How does this help this parent?  Especially when he has offered them no actual advice but to keep trying.  This response is so incredibly arrogant and disgusting it is almost mind boggling.   The ego that has to involved for someone to write this to a parent whose child is hearing voices telling them to kill himself is so vile it makes me sick to my stomach.  Obviously the family involved does not have the right treatment right now or they would not be in this predicament.  If they had the right treatment, they would know what to do when this happens.   And mistakenly they are writing to Dr. Raison for advice regarding help on how to get a plan.

I guess if the child goes ahead and kills himself it is due to the parents just not trying hard enough.

_____________

These were only the first three questions and answers I happened upon as they were linked to each other.

I didn’t have the heart to read more.

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.

So, in light of these situations, many parents are faced with the problem of how to manage their own child. How do you stop the dangerous behavior and help them to do the right thing? And often times, in times of desperation, the decision goes to whether or not to call the police on your own child. The thought is, maybe the police will scare them straight. Maybe dealing with the legal system and court system will make the child realize their actions have consequences and that this behavior is to be taken seriously. Maybe some time in a juvenile detention center or with a probation officer will be just what the child needs to make better decisions.

But does this work?

It is my personal opinion that, no, it does not work. And not only does it not work, it can have the opposite effect of what you thought it would do. You have now made your child into a criminal.

You have criminalized you own own child.

Now, I’m sure there are a lot of people that would disagree with me on this. And if you have a story that shows otherwise I would love to hear it. However, in my first marriage I was married to what the court systems consider as an adult to be a career criminal. He was raised in an incredibly dysfunctional and antisocial (i.e. engaging in behavior that goes against the norms of society) family and had a heavy drug problem starting at the age of about 13.  By 14 he was engaged in antisocial behavior that had him in and out of the court system, juvenile detention centers, boys camps, etc. for all of his teen years. By 18 he was in a prison diversion program that he stayed in until about 22 years old. And the story goes on and on through adulthood.

Did his involvement with the law as a teen scare him straight? No.

He used to tell me, the only thing going to juvenile detention centers or boys camps or whatever does for a teen boy is normalize antisocial behavior for them and make that the world they know. Not only does it not scare them straight, it desensitizes them to criminal or drug behavior and that becomes their new norm. And once your child has a probation office or is involved in the system, what are the chances that families whose kids are doing the right thing and have never had any contact with the court systems are going to want your child at their house? Or have their kids be friends with your kid? Pretty low. It would be the exception. So as a kid your are now steered even more to the wrong kids because those are the kids and the kids families that will accept those situations.

Now I’m not saying this is always the case. And I’m not saying the if your child is doing something horrible or endangering him or herself or your family to a grave degree that you should not protect yourself or your other children. Of course you should. But what I am saying is that one should think twice about the long term effects of calling the police on your child. Or having the child involved in the court system. And think about what that does to the child’s self esteem and self image. The child now sees him or herself as a criminal and knows that you also see them as a criminal.  That is hard to overcome.  Especially for kids already struggling with bipolar.  It’s now just one more thing for them to deal with and overcome.

Does this experience and self image help create a healthy adult?

It’s something to consider.

Do unto others as you would have them do unto you. ~ Jesus Christ

These posts are not written for compensation as I make no money from this site [note: I am an affiliate of Barnes & Noble through Google Affiliates so if by chance you buy a book from a link on this site I do make a percentage of that purchase price.  It has yet to happen so to date I have made no money.  I do enjoy Barnes & Noble though and I love books so I like to encourage both].   The guest posts are voluntary and are done simply out of the kindness of the poster’s heart to help me and other parents of bipolar children/teens understand the disorder.    They are paying it forward, if you will.  I am extremely grateful to all participants who take the time to help with this project.

If you are bipolar or have been diagnosed with bipolar disorder and would like to help with this project of understanding, please email me at meg@raisingbipolar.com.

Thank you and God bless you.

Meg

I mean, do these doctors know what they are doing?  I know they try but so many symptoms in children and even teens can be misread, misunderstood, misdiagnosed and overpathologized.  Much more so than with adults.  I know every psychiatrist we’ve had when I’ve really pressed them with questions and really drilled down to the nitty-gritty of what they are treating and how, they really don’t know.  It is all a guess.  And ultimately they will admit this, if you ask enough questions.  And to a point, that’s ok.  Let’s face it, the brain is far too complex for a simple psychiatrist to know what is going on or even the collective psychiatrist as a profession.  Especially since every person is different.  And then when you consider that the experience base and the spirit and soul of the patient is all intertwined with the chemistry of their brain, well that is far beyond any doctor of our time.  Especially in a developing child.

And yes, it’s true, psychiatrists can often help.  Many do the best they can and they help to the extent they can.  The good ones admit their limitations though.  The arrogant doctors, on the other hand, will reduce it all down to brain chemistry.  Oh yes, they will say, it’s all a matter of brain chemistry that just the right drugs can fix.   And in part, this may be right.  There is a chemical element involved.  However, I challenge any person whose child is seeing a doctor for a brain chemistry issue to really drill the doctor down about the specifics of what they are doing or treating.  If your doctor has a definitive answer, they are lying to you. After all, even the makers of the drugs will admit that they don’t know how the drugs really work or what they really do.  You know, they will say, it’s all something to do with neurotransmitters.  But which ones?  Oh well, serotonin,  dopamine, norepinephrine and oh and then there are those newer ones that only the ‘really good’ doctors know about.  Yea, right.  And if we can all be reduced to a chemical reaction, what is the value of human experience, emotions and spirituality?  And why do all of these elements effect us so much and impact our chemical reactions?

It’s not an easy answer.

Check out a few of the websites from the makers of the atypical antipsychotics that are/ have been used on millions of  kids in the United States today (mine included) and see how much the makers of the drugs know about the drugs they make.

Risperdal:

The symptoms of bipolar mania are thought to be caused by chemical imbalances in the brain (either too high or too low). These chemicals are called dopamine and serotonin. Although it is unclear as to exactly how RISPERDAL^® works, it seems to help balance the chemicals in the brain called dopamine and serotonin. While it’s not a cure, RISPERDAL^® may help you to manage your symptoms.

http://www.risperdal.com/faqs_bipolar.html#work

Seroquel:

Chemical Imbalances May Lead to Bipolar Depression Symptoms

Bipolar disorder and other mood disorders are thought to be caused by chemical imbalances in the brain. These imbalances are believed to lead to the symptoms that you experience with bipolar depression.

Although the exact way Seroquel XR works is unknown, it is thought to help regulate the balance of certain chemicals in the brain, which may help to treat bipolar depression.

http://www.seroquelxr.com/seroquel-xr-bipolar-disorder.aspx?ux=l

Abilify:

The exact way ABILIFY (or any other medication for Bipolar I Disorder) works is unknown. However, it is thought that ABILIFY may work by adjusting the level of certain chemicals (dopamine and serotonin) in the brain. Dopamine and serotonin are called neurotransmitters because they help information travel inside the brain.

http://www.abilify.com/bipolar/pediatric/pediatric-bipolar-treatment.aspx

I don’t know.  Sometimes a best guess is all you have.  And that’s ok.  Sometimes that is enough.

But not today.  Not for us.  We are taking a break.  Rye gained a ton of weight from the meds he took to overcome the psychosis from the Adderall.   He needs to lose that weight and he needs a break from overanalyzing everything and creepy doctors that are trying to ‘bring out’ something in him. Yuck.

We will make an appointment with a neurologist.  And who knows, we may end of back at a psychiatrist eventually.

For now, though, we will just take it one day at a time.  To date we’ve had way more issues when Rye is on the meds than off.  He’s acted way more bipolar on the bipolar meds than off.  And then, of course, ultimately his reaction to the meds just leads to them wanting to give him more meds which then makes him act even weirder.  And I’d say as of late even  the therapy alone without meds has gotten weird as well.

So we’ll just stick with the benadryl, fish oil, multi-vitamin, epsom salts and copious amounts of exercise we are using for now and see where this takes us.

The psychiatrists will always be there if we need them.

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.

In case you have not seen it already, the article in question is from the New York Times on December 11, 2009.

Here’s the link:

http://www.nytimes.com/2009/12/12/health/12medicaid.html?_r=1&em

The premise of the article is that kids on Medicaid (and just for the record, all foster children in the United States are on Medicaid) are prescribed antipsychotics at 4 times the rate of children not on Medicaid.

After reading the article, this is what really gets me (and I know it’s bothered more than a few other people as well):

Because there can be long waits to see the psychiatrists accepting Medicaid, it is often a pediatrician or family doctor who prescribes an antipsychotic to a Medicaid patient — whether because the parent wants it or the doctor believes there are few other options.

[...]

“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.”

Oh my Lord, seriously?   Yes, if only we could all get Medicaid and get a psychiatric diagnosis for our kids from a family doctor that is not trained in psychiatry and then have said doctor prescribe mind altering/psychotropic drugs with potentially long lasting (if not permanent) debilitating side effects for our children.  Oh, if only we could all receive that great treatment.

Eeek.

And Dr. Carlson is on the Scientific Advisory Committee for CABF (pointed out by Stephany on Soulful Sepulcher).

Gad zooks.

So, where is the hope for the kids of our country and the parents of kids with struggles who put their faith in doctors?  And where is sanity to be found in our mental health system?

Luckily, it’s in doctors like Dr. Derek H. Suite of the Bronx.  Dr. Suite, psychiatrist, explains his position:

Too often, Dr. Suite said, he sees young Medicaid patients to whom other doctors have given antipsychotics that the patients do not seem to need. Recently, for example, he met with a 15-year-old girl. She had stopped taking the antipsychotic medication that had been prescribed for her after a single examination, paid for by Medicaid, at a clinic where she received a diagnosis of bipolar disorder.

Why did she stop? Dr. Suite asked. “I can control my moods,” the girl said softly.

After evaluating her, Dr. Suite decided she was right. The girl had arguments with her mother and stepfather and some insomnia. But she was a good student and certainly not bipolar, in Dr. Suite’s opinion.

“Normal teenager,” Dr. Suite said, nodding. “No scrips for you.”

Whew.

A little piece of hope.

- 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.