We met with the new psychiatrist this week.  Or what may become the new psychiatrist.  I say ‘may’ because I have also made an appointment with another psychiatrist so we’ll see who we like better.

So, how was he?  Well, ok, I guess.  This one is fairly young.  He’s less than 10 years out of med school and he’s young, energetic and tried really hard to be ‘hip’ and connect with Rye.  And Rye seemed to like that.  As for me, though, I was a little more leery.  I tend to like older, more tried and true doctors who have seen it all.  Rye’s previous psychiatrist had well over 35 years of experience (he technically could have retired if he had wanted to) and I felt like he was very good at what he does and was very mellow as well.  He didn’t get all hung up in the vernacular of things and was good at seeing the bigger picture.  The new pdoc?  Well, he’s newish in his career and associated with a hospital (he’s on hospital staff) so he has to follow a bunch of criteria whether he wants to or not.  And he has to answer to a bunch of people whether he wants to or not.  And that can get kind of annoying.

For example, he does not like to use the term ‘bipolar’ and feels unsure that Rye really has ‘bipolar’ because after all, he has known us for all of 2 minutes now and do we, as a society, really know what bipolar looks like in a child?  So, he uses the term “Mood Disorder NOS” and gave us a whole mini lecture about it.  Dude, wtf, who the crap cares what you call it? If it makes you feel better to call it Mood Disorder NOS, go for it.   Call it ‘Der Wienerschnitzel’ if you want but let’s not mess with what’s working.    And honestly, let’s not debate what bipolar looks like in a teen.  If your child gets so hyper that they can’t attend school, can’t concentrate, make terrible decisions, engage in dangerous behavior, have no peace of mind, racing thoughts, racing speech, superhuman strength, can’t sleep, can’t relax, get delusional, get paranoid, hear things, see things, have debilitating nightmares…it’s not just a case of the ‘hypers’.  For peet’s sake.  Let’s not reinvent the wheel here.

Another thing, because this psychiatrist is on hospital staff, he has no say in his schedule.  In other words, we saw him for an hour for our initial appointment and going forward we will only be able to see him for 20 minute increments for med checks.  Even if we wanted to see him for hour long appointments and pay out of pocket to get more out of the experience or get more help, we can’t.  He’s not allowed to do that.   So, our fate rests in the hands of someone who knows us not at all and who really can’t get to know us either, even if we wanted to.  Even if we wanted to pay extra for it.  I don’t like the inflexibility of that.

Also, he asked for records.  All of Rye’s records from the dawn of time.  Why?  Because apparently he is going to look them all over and decide if all of these ‘diagnosing’ doctors (his colleagues with much more experience than himself) are right in their diagnosis .  And, because he says it will take their hospital staff 100 years to get the records if we leave it to them (not very reassuring), I need to do it all myself.   Apparently it is out of the question to just pick up the phone and call Rye’s previous pdoc for 5 minutes to get the run-down, colleague to colleague.  And to this end, getting Rye’s records is a pain but overall no big deal and all sounds good and great but let’s think about this…given the fact that we have now already had our allotted one hour appointment and from now on we get 20 minutes every month or up to every 3 months (our choice) to see him in total every year, this record seeking journey hardly seems worth my time.  When is he going to look these records over and when is he going to discuss his findings with us?  In the 3 hours total a year he sees us (of which we’ve already used 1 hour up)?  It’s never going to happen.  Also, he expressed concern that Rye’s learning disabilites may be causing his ‘bipolar’ like behavior.  Ummm, no.  Let’s not be ridiculous.  Learning disabilities don’t land kids in hospitals with crazy erratic behavior and audio and visual hallucinations, etc. etc, etc.

Anyway, the good news?  He is very nice and personable.  And I know he means well.  He appears to be a sweet person.  And Rye really likes him.  And he’s close to our house.  And he’s covered by insurance.  So, we’ll keep him in the running.  And, most importantly, he didn’t change the meds or even ask about changing them.  So that’s good.

Let’s not try and fix what isn’t broken.

He is that stable.

One of the things I have noticed recently is that due to the long length of stability he has had now (almost a year) in conjunction with growing a little older, he has really matured emotionally.  And he has become so much more independent this summer it is incredible.  He takes his meds on his own even while he is away at friend’s houses, he is not scared to go away with kids he does not know (summer camp), and he went on a trip to New York with Don by themselves and he loved it.  Seemingly he didn’t miss me at all.  This is a far, far cry from where he was a year ago when he was unstable and would barely leave my side.

I’m happy for him.  Very happy.

Looking back I can say there was a point last year when I wondered how independent he would ever be.  I was scared.  And saying this is odd because he was very independent as a young child.  Fearless, really.  All through elementary school he was very outgoing, perky, lots of fun to be with, everyone’s friend.  And then came middle school and the bipolar really set in and that all went to hell.  Well, no, I take that back.  When he was manic he was fearless too but that was in a different way.  A destructive way.  A scary way.  And then there was the mood swings, and the rages, the crying, the suicide threats, and the hallucinations and the thought disturbances.  I honestly didn’t know if we would ever make it out of that.

And yet,  here we are.  In a place I never thought we would be just one year later.  He is now himself again, like a more mature version of the boy he was before the bipolar emerged.  He is back to good.

Will this last? Who knows.  No one can predict.  But I can say I am glad for this time.  Glad for him to get a taste of independence and self confidence after having been so unstable.  Glad for him to have the opportunity to take ownership of his need to take meds and need to monitor himself some (he tells everyone he is around that he is bipolar and has to take his meds).  Glad for him to tell his doctor everything that is going own in his own words and work together with his doctor to get what he needs.  Glad for him to mature emotionally and see what it feels like to be ‘him’ again, only better.  Older, stronger and more capable.   To have control of himself, his emotions, and his life.

And the best part?  Now, going forward, in times when he does become unstable [and chances are most likely he will have these times throughout his life] he will know.  He will know what stability feels like.  He has this experience under his belt and will know that although he may be struggling at that moment and he may be out of his mind at that moment, stability is achievable for him.  He will know somewhere within himself what he is striving for.

And this is it.

_______

As for Dr. Stuart Kaplan and his Newsweek article, here are my thoughts.

Thank you Newsweek Magazine for your cutting edge journalism and breaking scientific studies but Dr. Kaplan is about 20-30 years late to this party.   Childhood bipolar disorder exists.   Is it common?  No.  Is it overdiagnosed and overmedicated in very young children?  Possibly.  But does it exist?  Yes.  And you don’t need an MD or a PhD to figure this out.  Ask any large group of adults with bipolar disorder when their symptoms began and many will tell you in childhood.  Period.  And most of these adults wanted help as children but no one believed them thanks to people like  Dr. Kaplan, propagating the idea that their symptoms were all phony or should be chalked up to something else.   Many of these children attempted suicide.   Some completed their suicide attempts and are no longer around to tell their stories.

Children with ADHD and/or ODD (and is this, ODD, really even a diagnosis?  people aren’t just assholes for no good reason, there is an underlying mood component to this) don’t experience psychosis.  They don’t experience visual and/or auditory hallucinations, they don’t experience incapacitating depression or attempt suicide, they don’t become homicidal, paranoid, delusional, experience thought dysfunction, hypersexuality, and on and on.  And the idea that we can fix these symptoms with stimulants as you would use to treat ADHD ??  Yikes.  There could not be a worse path to take.

And, as for bipolar disorder being trendy. When did this happen??  I can tell you from personal experience, tell people your child is bipolar and about the last response you will get is…’cool!   How can I get on that train? ‘

I know about 5 kids (children and teens) in total with bipolar disorder in our entire community.  And all of them have a direct biological relative with bipolar disorder.  In contrast, 1 in 10 kids now are diagnosed with ADHD.   Teach in any school in America and at least 10% (and sometimes up to 25%) of your class with be on stimulant medication.  Now that is trendy.  And sad.  You can’t tell me that 10%-25% of American children as young as 5 years old need to take speed to function and learn.

Ring, ring…

Dr. Kaplan, the 1980’s are calling and they want your professional opinion on childhood bipolar disorder…

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.

The good news is that the home life is good, Rye is doing well at home and has *so far* [I have a feeling this is about to change] what is probably his best school attendance ever.  He has only missed a couple of days so far this year and for him that is monumental.  The bad news is that the stress of school and football is starting to get to him and is tinkering with his peace of mind.  For him it is really hard to go to school, sit all day, do work that is really hard for him, and deal with all of the different kids and teachers and all of their different personalities and demands.  As a result,  he now seems to be having some occasional thought issues  and can get agitated at times (although it passes quickly).  He also today told me that at times he is seeing ghosts and such.  Not good.  So, what to do, what to do.  I guess we will call Doc and see about his meds.  I am leary to just up his meds so he can deal with school but I don’t want to just jump the gun and pull him out of school either as I know he is learning at least some of what he is supposed to be learning and it’s nice for him and I to have some time apart.  Also, its good for him to have some structure to his day and to learn to deal with different personalities, etc.   And I know there are parts of school he enjoys so it’s not a total loss.

Urgghh,  it’s always something.

And as for football, sadly his team seems to be imploding.  I guess quite a few people were turned off by the whole police/coach scene last week (us included).  Rye was completely freaked out by this (even though we weren’t even there to see it) as he has issues with feeling safe anyway and has a real issue with people that have been arrested due to experiences with BigB.  Anyway, as a result of that and some injuries due to sub-par coaching, many people are pulling off the team leaving not much left behind.   I guess we need to figure out what direction we want to go with that.

In other happenings, Rye told me yesterday after a very frustrating day at school that if possible he just wants to get his GED at 16 and go to community college and work outdoors.  He says he can’t see spending 5 more years sitting in classes all day being frustrated.  I guess I see his point.  If school was that hard for me and the stress of it made me see things, I would not want to do it either.  Although he does enjoy learning. I think the public school situation/culture may just be too much for him no matter how many IEP accommodations we have.   And  Special Education has basically been done away with where we are so there aren’t many options in the schools.  And I know there are alternatives to public school so we may need to look in that direction for the next few years.  He says he already knows that at community college you don’t sit in class all day every day and that that is more his style.  Class and then a break.  Class and then a break.  Makes sense.  And he says he never, ever wants to work in a job where he sits at a desk in an office all day.  That made me laugh.  Good for him for already knowing that about himself.

I can really see him in a job where he is outdoors all day.  That is the perfect scenario for him.  He gets great peace from nature and physical outside work.  I guess we’ll have to start looking in that direction.

So, it dawned on me yesterday when re-reading my post that perhaps I should elaborate on what I mean when I say that Rye is stable.

After all, what is ’stability’?

I’ll be honest,  I don’t know.  I mean, what is stability to others?  I don’t know.  We are learning as we go over here and all I can do is tell you what it looks like for us.

So, what it means for us is…Rye is not controlled and consumed by emotion.  His thought processes and perceptions are reasonable and he is functioning at a somewhat normal speed.  He is malleable, teachable, and capable of redirection.  He is more like a neurotypical kid.

Now…does he still get mad?

Yes.

Does he sometimes get really mad?

Yes.

Does he still get sad?

Yes.

Does he still cry sometimes?

Yes.

Does he still get frustrated?

Yes.

Is he happy all of the time?

No.

Is he happy a good deal of the time?

Yes.

Does he rage out of control with unstoppable destruction?

No.

Does he sometimes get overly happy and laugh that ‘over the top’ maniacal laugh?

Yes.

Does he engage in reckless and dangerous behavior with no thoughts of the consequences?

No.

Does he still need discipline?

Yes.

Does he still need structure?

Yes.

Does he always make the right choices?

No.

Does he need a lot of excerise?

Yes.

Does he care about others?

Yes.

Does he show empathy towards others?

Yes.

Can we tell him ‘no’ without him falling apart?

Yes.

Does he still have problems with transitions?

Yes.

Is he able to attend school?

Yes.

Is school still a struggle?

Yes.

Is he able to play group sports?

Yes.

Does he still have some anxiety?

Yes.

Is it crippling anxiety?

No.

Does he still need a lot of sleep?

Yes.

Is he able to sleep without issue for at least 8 hours a night?

Yes.

And that’s it in a nutshell.  As Rye is extremely sensitive to medication, we struggle with him being hypomanic or overmedicating him.  It’s a very fine line because he reacts so strongly to the smallest doses of meds. So for now, we choose to have him hypomanic as long as he does not hurt himself or others.

But it’s always in flux.

What does stability look like for your family?

I’ve been reading a lot of articles lately of recent accounts of children dying from taking pharmaceutical psychiatric drugs.  In one case the child’s body system shut down due to overdose, in another the child had a heart attack, and in another the child hung himself.

And all I can think is, if you give your child pharmaceutical drugs (which I have done and will most likely do again – although my child is older now and the risks of use are less than with younger children) and the child dies as a result of taking said medications [be it by organ failure, suicide, allergic reaction, whatever], who is responsible for the death?  Is it the parent responsible?  Is it the doctor that prescribed the medicine responsible?  How is this decided?

And does it matter who is responsible?  Or is it a mute point once the child is dead?

What if one parent wants to medicate the child and the other doesn’t?  Whose opinion wins and makes that final decision and if the final decision is to medicate how does the other parent feel?

And, what if the medicines given to the child are prescribed under the category of ‘off-label’, meaning they are not approved by the FDA for children as young as are receiving them because those meds have never been tested on that population and no one knows the long term results of the medicine on young, developing brains?  Then who is responsible if something goes wrong?  The doctor that prescribes the meds for off-label use or the parents that accept and utilize the meds for off-label purposes?

I know with Rye we have tried quite a few meds.  We have not had great luck so far and have actually had some very scary results from some of them.  To the point that right now the only ones I think I’d even be willing to try again are Depakote or Lithium.

But I always wonder…how do you know when the potential benefits of using psychiatric medications outweigh the risks?

I can’t tell you how many stories I have heard of parents using anti-psychotics to calm a child down or reduce mania only to find that after years of using the anti-psychotic for the one reason, when they then try to take the child off the med for whatever reason the child now actually has a permanent thought process disorder or permanent psychosis.   That is freaking scary.   And these are kids who never had hallucinations or delusions prior to taking medication, they were just hyper or appeared to be manic.  And now they have a thought disorder.  Or permanent tics.  That happens as well.  Or man boobs.  That can only be corrected with surgery.  That happens as well.

And what about polypharmacology?  On children.   That’s a whole can of worms in and of itself that I honestly believe no one fully understands, especially when you take into account how different each individual’s body chemistry is.

I know for us personally we have used Adderall two different times in Rye’s life (yes, we were stupid enough to do it again after one really bad reaction) and both times the Adderall caused mania and psychosis.  The first time at 6 years old, when the Adderall was combined with Risperdal, it also caused a Grand Mal seizure.  The second time this manic/psychotic reaction to Adderall happened, at age 12, it took us months to get him out of the psychosis.  It was really scary.   And had I not been very cynical of the meds and always questioning our psychiatrist (which don’t you know he just loves – thank god the man is very expereinced, patient and flexible), we probably would have thought Rye needed to be on anti-psychotics forever, which he does not.  The psychosis did go away.  Both times.

I’ll tell you, I don’t have any answers but I do know that it’s all scary.  I would never forgive myself if my child died from taking a psychiatric medicine I gave him.  That said, I know I also have to be careful that he doesn’t die from the symptoms of his illness either, which makes it a delicate balancing act.

It’s tough.  These are tough decisions to make, there’s no doubt about it.  And I can see why parents choose all different routes.   Medicating is stressful.  Not medicating is stressful.

None of it is easy.