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?

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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.

I was nervous to go.  Being honest, it all sounded a bit depressing.  No, more than a bit depressing.  Really depressing.  A bunch of depressed people sitting around discussing depression?  Yikes.   What could be worse, really?

Well, last night I had reached my breaking point.  Rye and I had had a very long day and I needed to vent.  I needed to talk to some people that knew what the heck I was talking about and quite honestly I was starting to get depressed so I figured at this point I had nothing to lose and would probably fit in just fine.

So, I went.  There was a meeting not too far from me and I bit the bullet and went.

When I got there I was leary.  It took me forever to find the meeting room.  Then I got there too early and there was no one there.  Then when there were people there there weren’t that many.  And at first glance they didn’t seem too perky.

The meeting started.  People shared.  I listened.  I shared.  I heard people’s stories.  I felt the emotion.   I watched them care for one another.  I heard them bare their souls.   I saw the support.  I felt the love.  It was incredible.

And exactly what I needed.

I told them about Rye and his struggles and my feelings about it all.  All of it.  In a nutshell, of course, as one must be mindful of time.  And they were wonderful.  They reached out to me.  They didn’t judge me.  A few of the men told me that they knew at 12 or 13 that they were bipolar.  One man said at 13 he knew he was an alcoholic  but that he didn’t know about bipolar until much later in life.  They talked about medicating, not medicating, doctors, hospitals, ups, downs, good sides, bad sides, all of it.   Some of them had had great success in life but still discussed their struggles.  Some were on disability and discussed that journey.  There was a whole range of people.  But they all shared the same emotions.  They same base issues.   And they all treated each other as equals and with dignity, respect and an outpouring of kindness.

To say it was moving would be an understatement.

So, I have found a new part of my week.  The local DBSA meeting.  I left that meeting feeling like a 500 pound weight had been lifted off my shoulders.  I had never met these people before and yet I could talk to them about everything.  Everything.

Here is the website if you would like to find and try a meeting near you.

http://www.dbsalliance.org/site/PageServer?pagename=home&cvridirect=true

I can’t tell you how wrong I was with my initial fears of going to this meeting.  It was the furthest thing from depressing I have experienced in a long time.   In fact, if anything, it was the best thing I have experienced in a long time.  It was hopeful.  And loving.  And it was time.

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

http://www.nimh.nih.gov/health/trials/index.shtml

I personally have mixed feeling about these trials and would not involve my child in any that involved medication but I do think participating in these studies can be a good way to get tests and services that one might not be able to afford or have access to otherwise so I thought I’d post the link.   And many of the studies only involve cognitive testing, therapy or behavioral observation/retraining.

Anyway, there are studies going on all across the country for all different issues.  My friend has a son with Fragile X Syndrome and they have participated in a lot of studies that get him some really great services and tests that they never would be able to afford otherwise so it has worked really well for her family.

If anyone has ever participated in any of these studies, please let me know how it went.

Western Medicine theorizes that bipolar disorder is a chemical imbalance in the brain.  Or, at least that’s what the treatment protocol is based on – using pharmaceutical medicines to alter neurotransmitters in the brain.  But if it’s a chemical imbalance in the brain, why are the brain chemicals in balance sometimes and not others?

No one seems to know.

According to the Mayo Clinic Staff, they don’t know what causes bipolar disorder.

It’s not known what causes bipolar disorder. But a variety of biochemical, genetic and environmental factors seem to be involved in causing and triggering bipolar episodes:

• Biochemical. Some evidence from high-tech imaging studies indicates that people with bipolar disorder have physical changes in their brains. The significance of these changes is still uncertain but may eventually help pinpoint causes. The naturally occurring brain chemicals called neurotransmitters, which are tied to mood, also may play a role. Hormonal imbalances also are thought to be a culprit.
• Genes. Some studies show that bipolar disorder is more common in people whose biological family members also have the condition. Researchers are trying to find genes that may be involved in causing bipolar disorder. Some studies also show links between bipolar disorder and schizophrenia, pointing to a shared genetic cause.
• Environment. Environment also is thought to play a causal role in some way. Some studies of identical twins show that one twin has the condition while the other doesn’t — which means genes alone aren’t responsible for bipolar disorder. Environmental causes may include problems with self-esteem, significant loss or high stress.

http://www.mayoclinic.com/health/bipolar-disorder/DS00356/DSECTION=causes

Well, ok.

Looking for more answers I decided to look into a more holistic approach – Traditional Chinese Medicine (TCM).  TCM has been around for thousands of years.  Western Medicine is the baby of medicines compared to Chinese Medicine so the Chinese Medicine Praticioners must know something, right?

I have just begun my search but so far I am intrigued with what I have read.  I mean, after all, the brain is not an isolated organ. Your brain cannot live without your other body systems working.  So if the brain is suffering an imbalance it seems logical that other body systems must be as well.  Or, maybe it’s another part of the body that is suffering an imbalance and this is causing the imbalance in the brain.

And then I found this:

Because of the belief by Western Science Practitioners that all emotions come from the brain, when patients suffer from disturbances in their emotions, Chemicals that mimic Brain Neurotransmitters are given to correct these mental disturbances.    TCM practitioners believe that emotions are associated with the Five Elements. We believe that balancing the Organ associated with the emotion will balance the emotion. Sometimes the Organ is out of balance and produces the emotional imbalance. But sometimes the emotion imbalance can produce an Organ imbalance. The difference to the practitioner is important only in preventing a reoccurrence of the problem.

http://www.hantang.com/english/en_Articles/EMOTION.htm

Now I’m really intrigued.

This is starting to seem logical.  The body works as a whole.  The individual parts are interdependent and so what effects one system can effect another system.

And then I found this:

Acupuncture was applied in the treatment of depression and psychosis in aged patients at the Institute of Mental Hygiene in Beijing (14). The patients were aged 50-74 and suffered from conditions such as manic-depressive psychosis, reactive psychosis, and neurosis. The treatment focused on baihui (GV-20) and yintang (M-HN-3), using electroacupuncture stimulation. Of 30 patients treated, it was claimed that marked effects were observed in 19 (about 2/3). The claimed improvements were in depressed mood, suicidal intention, anxiety, insomnia, and irritability, as well as alleviation of some accompanying physical symptoms.

http://www.itmonline.org/articles/acubrain.htm

More than interesting.

I’m going to look into getting an appointment for Rye with an experienced TCM Practicioner.

If anyone out there reading this has any experience with using TCM with Bipolar Disorder, please let me know how it worked for you.

- 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.

This is the video that came before The Medicated Child, the video about bipolar medication use in children, which I had posted about previously.

Like The Medicated Child, this video is free to view online and is well worth the time to watch it.

Of particular interest are the follow ups of these kids done years after the taping of the original video – be sure to read these.  It is so interesting to see what the kids themselves choose to do about taking their medications as they get older and can make their own decisions regarding medication.   The discussion and interview transcriptions are interesting as well.

http://www.pbs.org/wgbh/pages/frontline/shows/medicating/

Check it out.

The show is by Frontline on PBS.   You can watch it for free online and I highly recommend it.

I also recommend reading the transcripts of interviews with the various experts – they are excellent as well.

Here’s the link:

http://www.pbs.org/wgbh/pages/frontline/medicatedchild/

It was a little difficult for me to figure out how to move from one part of the video to the next but there is a montage of links above the video as you watch it that you hit to move from one section to the next.  Hopefully, you will see it quickly.  I’m a little dense and it took me a while to figure it out.

Anyway, in light of watching this video and also doing ridiculous amounts of internet research last night I decided to hold out on the Trileptal for now and just stick with the very low dose of Abilify we are currently using.  As long as we keep Rye’s stress level low, he seems to do really well just with this one med for now.

And, luckily Doc (our child psychiatrist) is big advocate of using as little medicine as possible at as low of doses possible so I know he will be ok with this.

Now, next order of business…adjust the school schedule to keep Rye’s stress low. Easier said than done in middle school.

I see an IEP meeting in my future.

I was looking to find out…What is it like? What is going to be in our future? What are the gritty details of the path that is now upon us? What meds do people use? etc, etc. I wanted any and all information.

During one of my evenings of research, I found this blog and I want to share it with you because it really pulled at my heart.

www.bipolarsupport.blogspot.com

This blog is no longer being updated and when you link to it you will see why but I am so grateful to this family for putting this out there. In an odd way, I found it comforting. Well the honesty, I guess, is what I found comforting and the heartfelt concern these parents have for their child. I can relate – especially with having a boy that lives life to the fullest.

This blog is what inspired me to start my blog. My writing style is very different than that of the parents of bipolarsupport and I talk about all kinds of things going on in my life, stories, etc. in my blog, many of which are unrelated to bipolar, but my heart is in the same place. I am not exactly at the point they were when they started their blog in that my child is still at home and we have a good five to six years to go until he is out there completely making his own decisions. Nonetheless, their story inspired me to capture our memories while I can and focus on the positive as it happens – because you just never know what the future will bring.

My hope in writing my blog is that I can pay forward what they gave to me. Writing Raising Bipolar helps me reflect on our daily lives, capture the good moments and the bad and essentially acts as therapy for me. Also, I’d like to know that maybe, just maybe I let another family of a bipolar child know that they are not alone in this journey.