A few years back I wrote about how my son (who was 12 at the time) took Abilify as a stand alone medication for a few months and had suicidal thoughts while he was taking it.   This was unusual for him as he is not a suicidal kid in general and when we discontinued the medication due to it giving him tics of odd tongue movements and neck rolls, the suicidal thoughts discontinued-as did the tics.

Over the years since then I have received quite a few emails from people relating to that post and sharing similar issues of suicidal thoughts or tendencies while taking Abilify – either with themselves, their loved ones, or their children.  Because I have no way to verify the legitimacy of these emails, I have not written about them.  However, a few days ago I received an email from a man saying that his fiance completed a suicide attempt and he is now devastated by the loss.  I was struck by that email.   He attributes the suicide to her taking a combination of Pristiq, Abilify and Adderall.

He says:

The pills made her more and more irate, unapproachable, wild, irrational, paranoid, and completely not “herself”…Definitely not the person I met and fell head over heels for. She nose dived in a matter of 2 to 3 months with the biggest hit coming with the addition of the Abilify.

_______

I cannot get this email out of my mind.  As you know, stimulants caused huge issues for my son and Abilify was not good for him either.

If your child or family member is taking stimulants (Ritalin, Adderall, Focalin, Concerta, etc.) and/ or SSRIs or SNRIs (antidepressants like Prozac, Zoloft, Effexor, Paxil, Pristiq) and/or Abilify and they are suicidal and/ or worse than they were before they started the medication and/or simply cannot get stable, PLEASE consider that the medications that are supposed to be helping them could be making them worse.   Do not discount their behavior as simply a part of bipolar behavior or as you having a child that simply cannot get stable.   Stimulant medication and medication with stimulant-like properties does help people that can tolerate it but it can also wreak havoc on people that can’t and even more so on bipolar teens, children, and adults.

This has happened to us, it has happened to others, and it can happen to you.

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?

____________

Hypomania : Silliness, laughing, hyper, fast talking,  slight pressure, funny voices, funny faces, exceedingly happy, hyper, overactive but fun to be around, creative, productive, loving, irritability but it passes

Mania: hitting, spitting, yelling, destroys property, lifts furniture, pressure, pressure, pressure, swearing, threatening, extreme irritability, broken or little sleep, bad choices, seems to have no conscience, wants to run away, threatens to run away, danger seeking behavior yet has extreme fear, addictive behavior, can be delusional, irrational thoughts, hateful, desperate

~~~~~~~~

For us, hypomania is ok and is the place where Rye hovers at normally.  It’s the place I think of when I think of Rye and his natural personality and demeanor.  It’s what makes Rye who he is.

Full mania is not tolerable and is exhausting.  Completely exhausting.  For him and everyone around him.  He is now on Depakote to try and prevent full mania.  He is also on a tiny dose of Abilify to help us all from self-combusting for the next couple of days until the Depakote kicks in.

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’.

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

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

It’s not an easy answer.

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

Risperdal:

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

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

Seroquel:

Chemical Imbalances May Lead to Bipolar Depression Symptoms

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

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

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

Abilify:

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

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

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

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

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

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

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

The psychiatrists will always be there if we need them.

Once you’ve seen the far away eyes of mania, you never forget it.  It’s haunting.

Despite my saying previously that I would not use the Abilify again, I did. I guess that makes me a liar.  But I had to use it to bring him back down to earth.  Otherwise his plan was to take the car and drive himself to California.  Which, according to him, he knew exactly how to do and in his mind knew exactly what roads to take.  Within about 15 minutes of taking the Abilify he said he could feel it start working and calmed down.

Oddly, he’s fine today and had a good day at school.

Next week we see the psychiatrist about starting Lithium.

“Abilify,” I say “that’s the medicine you took to stop hearing things after the Adderall reaction.”

“Oh,” Rye says.  “That’s what I thought.  So, why are they advertising it for depression?”

“Well, they are saying it makes a good add-on for an antidepressant and also in low doses it is considered to be more of an anitdepressant than an antipsychotic.”

“Well, that’s weird,” he says “I don’t understand how they can advertise it to help depression when the medicine makes you think about killing yourself.”

“What?” I say.

“Yea, that medicine makes you think about killing yourself.”

“What?  I thought it helped you,” I say.  “You thought about killing yourself on it?  I never knew that.  Why didn’t you tell me that?  You only said you didn’t want to take it anymore because it made you feel weird.”

“Well, mom,” he says, “that is weird.  Don’t you think?  It’s weird to think about wanting to kill yourself.  That’s why I didn’t like that medicine”

And with that, although Abilify did stop the hallucinations, it is gone as an option in this house.

So, why do I post this?  Well, it’s not to be alarmist.  And it’s not to be anti-medication.  It is to show myself and others how we aren’t ever 100% sure what is going on with our children.  And that our children themselves aren’t always sure how to communicate their feelings or experiences or thoughts to us, no matter how close we are with them.  And this is important to know.

And this is a great concern of mine with medicating children, my own included.  Children, due to their sheer age and level of brain development, don’t always know how to identify what is happening within them and then in turn can’t always effectively communicate about what is going on, even at 12 years old.  If they are really young they are too developmentally immature to know what they should feel or should not feel or what is real and what isn’t simply because of their age.  And the only thing adults have to go on is their behavior.  With Rye, his behavior was actually a lot better on Abilify.  He was less moody, more cooperative, and more even overall.  I had no idea, however, he was having suicidal thoughts.  He later told me that one of the reasons he took the med even when he didn’t want to [keep in mind, he only took it for about 2 months] was because the adults in his life, myself included,  kept telling him how well he was doing on it and he wanted to make us happy.  He did this in spite of having to fight off feelings of wanting to kill himself.  Just to please others, including me.  Thank God nothing terrible happened as a result.  Thank God he started to get the ‘neck roll’ from the med so we stopped it only after about 2 months.  Someone was watching over us, no doubt.

With that I’ve provided the link to the U.S. Full Prescribing Information for Abilify, which does warn that Abilify can induce suicidal thoughts, as well as some links to website providing other people’s experiences with the drug.

http://www.abilify.com/pdf/pi.aspx

http://www.askapatient.com/viewrating.asp?drug=21436&name=ABILIFY

http://www.furiousseasons.com/archives/2008/11/abilify_for_depression_ad_now_airing_on_tv.html

Please always read the full U.S. Prescribing Information provided by the FDA for all medicines you give your child, including all possible side effects and all black box warnings.  Please never think this could never happen to my child.

Because it can.

On the good side though Don and I were talking last night and we have both noticed that Rye’s nightmares have disappeared.  For weeks now.  At least since before Christmas and including through the trip to New York.  No more night talking.  No more night walking.  No more night screaming or night half dreaming/half awake times.  He now takes children’s benadryl (50mg) before bed every night and sleeps well with no disturbances.  We both attribute the disapperance of the nightmares to the Abilify finally be completely out of his system.  Abilify is a powerful med.  He only took 2mg for about 2 months and then once for about 3 days for a what I call an aftershock mini manic attack. And it has now taken this long (a few months) to completely get this drug out of his system.

I’m so glad the nightmares are gone for now.  He has never in his life had them as bad as he did from the Abilify.  I hear that Seroquel and other aytpical antipsychotics can cause the same effect so we will be staying away from atypicals unless we are in a true emergency.

So, so long for now NY

and hello Mayberry

After being in New York the town we live in feels like Mayberry, no doubt about it.  It also feels like we are living back in small town America in the 1950’s.

But that’s ok.

We love it.