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?

____________

When someone dies, it can be a struggle to remember.  Remember what they sound like [sounded like]. Remember their sayings and their idiosyncrasies.  Remember what it felt like to be in their presence.

And the post yesterday got me thinking…

When I lived in Kentucky, I had an Aunt T that lived there as well.  Neither of us grew up there.  How did we end up there?  That is a story for another day.  Suffice it to say, we both moved there independently to escape our lives as we knew them in our respective previous locations.   And we both ended up living there for a few years. In our refuge, in our safe haven in Kentucky, before Rye was born and life became the life I have now, we had a ton of fun. I really loved, and still do love, my Aunt T.  She was a blast to be with.

Now, for the record, I try and make it a general rule of thumb not to talk about family members in this blog.  I mean, they didn’t sign on for this,  so I have to respect that and leave them out of the equation.  However, because Aunt T is now ‘one of the dead ones,’ as my dad so gently and eloquently puts it [there are more dead ones than alive ones on his side], I guess I can talk about her.  To remember. I think she’d be ok with that.

Anyway, what does this have to do with mood disorders?

Well, Aunt T eventually died at much too early of an age from what I like to call ‘Depression fueled Congestive Heart Failure.’ In other words, she had congestive heart failure.  She also had diabetes.  Managed correctly neither of these ailments should have killed her at an early age.  However, because she also suffered from depression, she did not take care of herself like she should have and this lead to an early and abrupt death.

Depression, left untreated for years, is lethal.  It kills the spirit and eventually it kills the body.

Honestly, the whole thing just breaks my heart.  To this day, it breaks my heart.

The best thing I can do now, though, is to remember.  And as it is becoming harder to remember as time passes, I thought I’d write down some of the memories.  So I don’t forget.  During the time we lived in that area, it did not appear to me that she was depressed.  We spent many hours laughing and having a great time.  And maybe she was not depressed then.  I don’t know.  That’s the kicker with depression, though, sometimes it’s just really hard to tell.

So, here’s to the good times.

the red corolla, the dairyette, root beer floats, the airport, the airport staff, the airport cafe, coffee with cinnamon, lone oak, whaler’s catch, crown royal, amaretto sours, cynthia’s, frank, paul/pauline, dennis/denise, elvis, burning hunk of love, cracker barrel, hancock’s, the big E, little e, pizza at the majestic, cable guys climbing cable poles, rabbits, antique shopping, chicken farms, motorcycles, the amish cafeteria, green bar drinks, day old crab dip,  flatbed tow trucks, cars in trucks, going to the boat, dave/daisy mae, chicago, wallyworld, honey nut cheerios, ron, big apple cafe, pork chops and flower pot bread at patti’s in grand rivers, nashville, monogrammed zippos, dairy queen, wooden clogs, rolling down the river

Science is not there yet but Deep Brain Stimulation has been studied for many years now in an effort to alleviate symptoms of movement disorders as well as hard to treat depression and OCD.  And there has been some success.  Treating psychiatric disorders is more difficult than treating movement disorders as it is unclear at this point exactly where to place the electrodes but research is being done on this and scientists are trying to find ways to help patients with these disorders get better treatment results while using less medication.  DBS is somewhat similar to Electroconvulsive Therapy (ECT) in that they both use electricity to help reset and/or regulate the brain but the benefit of DBS over ECT is that DBS only stimulates a targeted part of the brain and not the entire brain, like ECT does.

As is explained in this article ‘Trying Brain Pacemakers To Zap Mental Illness’ by Lauran Neergaard, AP Medical Writer:

How does it work? Surgeons implant a wire deep in the brain. Tiny electrical jolts — running from a pacemaker-like generator near the collarbone up the neck to that electrode — disable overactive nerve cells to curb the shaking.

Scientists figured out which spot to target based on surgery that sometimes helps worst-case Parkinson’s patients by destroying patches of brain tissue. But with deep brain stimulation, the electrodes don’t destroy that tissue. The electrical signals can be adjusted or even turned off if they don’t help, or if they cause neurological side effects. (The surgery, however, does sometimes cause dangerous brain bleeding or infections.)

Psychiatric illnesses require a similar operation — but surgeons must implant the electrode into a different spot in the brain.

There’s the rub: It’s not clear which spot is best for which psychiatric disease. In fact, two manufacturers — Medtronic and St. Jude Medical — have begun major studies of DBS’ effects on depression. Each places the implant in a different region, based on promising pilot studies.

http://news.yahoo.com/s/ap/20110221/ap_on_sc/us_med_healthbeat_brain_pacemakers

_____________

You can read more about here as well:

Deep brain stimulation has long been seen as valuable for controlling movement disorders, according to the review, written by Susannah Tye, Ph.D., Mark Frye, M.D., from the Mayo Clinic Department of Psychiatry and Psychology, and Kendall Lee, M.D., Ph.D., Mayo Clinic Department of Neurosurgery. It now is being investigated for hard-to-treat psychiatric disorders, according to the authors. Early results indicate the effect on depression and obsessive compulsive disorder is beneficial, but the therapy needs further study, Dr. Lee says. The potential for this breakthrough treatment is enormous in reducing the toll of mental illness on patients, their families and society, according to the review.

http://podcasts.mayoclinic.org/2010/07/09/dbs-for-psychiatric-disorders/

Deep brain stimulation (DBS), an established treatment for some movement disorders, is now being used experimentally to treat psychiatric disorders as well. In a number of recently published case series, DBS yielded an impressive therapeutic benefit in patients with medically intractable psychiatric diseases.

http://www.ncbi.nlm.nih.gov/pubmed/20221269

When treating depression with DBS, the implantation and programming of the neurostimulator and leads are very similar in practice to its use in patients with Parkinson’s or epilepsy. What differs, however, is the specific area of the brain targeted by the stimulation.

http://biomed.brown.edu/Courses/BI108/BI108_2008_Groups/group07/Depression.html

Rages are an extreme presentation of behavior that can be exhibited in unstable people with bipolar disorder.  Some say rages are brought on by depression, some say mania, and some say they are seizures.  Really, it doesn’t matter.   The fact is, nothing good comes from rages.

Rages are:  out of control, destructive, yelling, screaming, hitting, threats, property damage, self damage, suicide threats, all of it.

For me and for our family, rages are an unacceptable part of bipolar disorder and must be proactively prevented and addressed with medication and trigger awareness.  Rages are often seen in younger children and while these are difficult and can be scary for parents, they are manageable while the child is young.  Rages in pre-teens, teens and adults, however, are dangerous and need to be addressed immediately and prevented with proper medication.

Think about it, your child is young and rages.  They are smaller than you.  You do what you can to prevent physical damage, mitigate the situation, protect the other children and animals in the path of destruction.  And more often than not, you can.   The rage passes and although people are shaken and some property may be damaged, things are still somewhat ok.

But then your child gets older.  They get stronger.  They get more socially aware and their peers notice their behavior.  Society knows that their brains are more mature and people expect more from them.  My son at 13 years old is taller and stronger than anyone else in our house (well, technically Don is still stronger than Rye but if Rye were to rage his adrenaline rush would make him strong enough to overcome Don).   He is 13 and over 6ft tall with shoes on.  And he is athletic and strong.

So, what do we do?  We can’t say that rages are ‘just a part of bipolar disorder’ to be worked through.  No way.  If you’ve ever lived with an adult that rages you know just how much emotional and physical damage can be done by this behavior.  Ragers are terrifying.  We must actively work to get the medication right.  And work to get trigger awareness. It is imperative that we prevent rages, not just deal with them once they happen. The stakes are too high now.  Once a rage happens, it’s quite possibly too late.  A full blown rage at this age would more likely than not result in a 5150 hospital admittance or police restraint.  And we don’t want either.  Also, we want Rye to be able to control himself, his environment, his relationships and have a high quality of life.    If he can’t control himself, he can’t have a high quality of life becasue he’s like a cannon constantly waiting to go off.  And he knows it, his friends know it, everyone knows it.  And eventually no one wants any part of it.

I’m happy to say that due to me getting over my fears of medication (which took a while), Rye has not had a rage in long time now.  I feel he is stable and now has the proper amount of medication for him to be stable.  Does he still get mad?  Yes.  Does he still get frustrated?  Yes.  And we actively work to prevent environmental triggers as well.  But with the Depakote and Seroquel (which we have started using daily) he is in control of his life.  He still laughs a lot and is very silly.  He still loves to have fun and is quite the character.  He still gets sad.  But he doesn’t get extreme and he doesn’t do things that endanger himself or others.

And we are aware…this is a work in progress.  And always will be.  Rye is always susceptible to rages.  It’s how his brain work.  But we can work with it to the best of our ability and work to give him the best life possible.  And that’s what we do.

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.

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

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

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

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

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

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

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

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

There is no ‘magic medicine’.

And such is the case with so many kids these days.  They go to the psychiatrist for one set of symptoms, get put on psychiatric medicines, over time have an adverse reaction to those medicines [psychosis, rages, depression, emotional meltdowns, violence, suicidal thoughts], and now they are diagnosed as bipolar and they are off and running down an endless lifetime of psychiatric medicines.  And the sad thing is, those medications can actually cause some of the psychiatric syndromes.  So it all becomes a self-fulfilling prophecy.

What a mess for the parents and the kids.  And a dream come true for the pharmaceutical companies.

Anyway,  I saw this article today on www.sciencedaily.com and it rang true to me with regard to what I wrote yesterday about accepting Rye’s reactions and just working with them.

The article High Sensitivity To Stress Isn’t Always Bad For Children states:

But contrary to expectation, such children were also more likely to thrive when they were raised in caring, low-stress families because of their sensitivities to the supportive and nurturing qualities of such environments.

“The study tells us that when children are highly susceptible to stress, it’s not always bad news, but rather should be considered in terms of the type of environment they live in,” explains Obradović.

http://www.sciencedaily.com/releases/2010/02/100205081815.htm

Interesting.

Environment makes a difference.

She wrote:

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

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

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

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

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

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

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

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

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

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

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

As well as:

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

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

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