What was good about the hospital?

• It seems to have gotten Rye out of the manic state that he was in.  He now takes 1000 mg of Depakote a day and can take Seroquel 25 mg at night as needed and from this his mind and body seem to function at a regular speed.  He is slower now and his mind seems to function with more purpose.  He now seems to want to do the right thing and make healthy choices vs. being drawn like a magnet to dangerous things and dangerous choices.  He seems to be able to think things through better and can regroup faster when he gets off course.    He is no longer on self destruct.
• It gave us all a break from the chaotic lifestyle and pressured speed we were all starting to function at to accommodate Rye.  It made Don and I realize how much we were enabling Rye to stay in a manic state and were enabling his bad choices.
• It gave us a chance to realize Rye needs a weekly therapist in addition to the psychiatrist he sees for medicines.  That he needs talk therapy once a week and med checks about once a month.  And he needs a male therapist that is pretty tough.  Someone he can’t manipulate and someone he feels comfortable talking to and whose suggestions he will listen to.
• It made Don and I realize that Rye needs much more structured time.  He is going to need to be kept very busy with structured activities.

What was bad about the hospital?

• The hospital Rye was in was exactly like a children’s version of ‘One Flew Over The Cuckoo’s Nest’.  It was all about control at any cost and there was a Nurse Ratched on every shift.  Honest to God.  A couple of these women even looked like her and had that same cold, calculated, sadistic type personality and demeanor.  Super creepy.
• Rye was never allowed outside or off the unit (which was very small to being with).  He went 2 weeks with no real exercise or outside air or any healthy, physical way for his body to move the meds through his system or to release tension and anxiety except deep breathing.
• The staff did not do any of the testing they said they were going to do.  They had him there for 10 days and the only test they did was an IQ test, which said his IQ was normal.  That was the extent of the educational testing.
• The hospital (University teaching hospital that claims to be very ‘up’ on the recent research) claims to have a behavioral based program.  This translated into the minimization of the effects of medication, no matter what the diagnosis, and blaming the child and/or parents for all behaviors the child exhibited even if the child was psychotic.   They felt a good behavior plan at home could fix everything.  And the social worker and nurses made that very clear.
• The behavior plan they utilized on the unit, however, consisted of making the child stay in their room for most of the day and punishing them if they came out when not ‘authorized’ to.  Overuse of two padded, locked rooms on the unit in which they would lock the child when they did not follow directions.  They did this to my son at least 3 different times and I saw them put a tiny 4 year old girl in there for an hour one evening and let her scream and cry the whole time simply because she would not eat her dinner – and then they were super nice to the mom the next night when she was there to visit and my guess is never told the mom about the previous evening.
• The other part of their behavior program is they PRN medicate the children whenever they don’t follow directions.   My son was almost held at the hospital an additional 3 days to monitor what they called an adverse reaction to a medication (Seroquel).  It turned out they had actually overdosed him and given him 3 times the dose they were supposed to in addtion to large doses of benadryl.  So, it wasn’t an adverse reaction.  It was an overdose.  By their staff.  And they overdosed him again the next day after the ‘adverse reaction’ as well and even added Ativan on top of it all then and kept him in his room all day so they didn’t notice that he was basically incoherant until I got there and demanded they discharge him immediately.  When I took him home on Friday it took him until Saturday to be able to form a coherant thought or conversation and until Sunday to calm down enough to resemble his real self (we stopped the Seroquel for a couple of days to let the overdose work it’s way out of his system).
• The doctors have no idea what really goes on on the unit.  Or if they do they lie when they talk to you.
• It is not a place of healing.  And the children do not receive therapy there.  It is a place of power, punishment, confinement, control, and would make any person crazy if they stayed there long enough.  In fact, I think this may be the problem with the staff.  They are a product of the environment they have created.
• I will never, ever forget the sounds of my son screaming and crying in those padded rooms (they always made sure to call me when he was in there I guess just so I could hear him in the backgound).  And I will never, ever forget the image of that tiny 4 year old girl being  dragged into that room and then being left in there to cry and scream and plead for nearly an hour.  Those sounds and images are permanently burned into my brain.  And I’m sure they are burned into the brains of all of the children on the unit as well as they all had to listen to the other kids that were in those padded rooms as the cries and pleads  resounded through the whole unit when a child was in there.

Wow.  And I guess that is enough.  I never met with a doctor in person except the original intake which lasted about 30 minutes.  We never got any positive anything from any staff member.  Ever.   [Edited to add: I take that back.  The doctor on the unit the first week was wonderful but unfortunately she left after 2 days as her residency ended.  The one the second week was bad.] When I pressed the doctor on the phone about their goal for Rye (the one from the second week), they did not have one.  They did not do any tests to rule anything out physically or physiologically that could have contributed to his issues.  I think they goal was just to keep him there as long as insurance allowed.  And then when they overdosed him, they petitioned they insurance to keep him there longer to monitor the ‘adverse’ reaction, which ironically they did nothing to stop and just kept piling on the meds until he could not even think right.   God knows how long that cycle could have gone on and how much they could have fried his brain if I had not have taken him out.

Amazingly, I don’t think the experience was a total loss.  It broke us out of our unhealthy cycle at home and got Rye’s meds to a therapeutic level.  I would not do it again, however,  unless it was a complete and utter crisis as I think it can be very traumatizing for the child.   And for the family if the family knows enough about what goes in in the hospital.

Inpatient psychiatric hospitalization for children or teens should really only be used as a complete and utter last resort.

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.

According to this article from Science Daily, mice can be made manic by removing a certain gene. And, they can benefit from treatment with Lithium, just as manic humans can.

http://www.sciencedaily.com/releases/2008/03/080312081256.htm

I wonder if they used the generic or the brand name?  Lithium Carbonate or Lithium Orotate?

Interesting. I feel sorry for the mice involved in these studies. I’m not sure what that has to do with anything, but it’s true.  Don’t you wonder what a manic mouse is thinking?

Eeek.

It turned out to be a bit of a bust. I took Rye out of school early and we came home for lunch to transition.  Then as we were trying to get out the door to drive up there he completely fell apart and did not want to go.  He was crying and turned into a total bag of tears about he was scared of me dying and for some reason he thought I was 49 years old and told all of his teachers that I am 49 and his dad is 29 (where the hell this came from I have no idea – I am not 49 and Don is not 29).

And what is he going to do when he is 60 and I am dead?  And where will he live when he’s 18?  He wants to live next door to us but then he wants to live far away from us.  And it went on and on.  Then he said his teachers were saying in class how he would not want to be around his parents anymore during his teen years and this scared him because he likes to be with his parents and does not want to be away from us (he has some pretty hefty separation anxiety).   In response I told him I have no plans of dying anytime soon and when he turns 18 he is welcome to live next door to us or on the other side of the world if he wants.  Whatever he needs to do.  Also, it’s fine to hang out with me and Don during his teen years or forever – he does not have to not like us during his teen years.  That is ridiculous.

Anyway, it finally simmered down but he did not want to go talk to the psychiatrist.  Apparently the last time he was there they had a discussion about masturbation that put Rye over the edge.  I’m sure the doctor was trying to be helpful as he probably thinks Rye does not talk to us about these things and was trying to be cool and hip but he was wrong and it freaked Rye out and he would not go back.  So, I went and talked to the doctor instead for the hour while Rye waited in the car.  The doc seemed a bit hurt that Rye would not talk to him but whatever.  I’m not going to force my kid to talk about masturbation with someone he sees once or twice a month if he doesn’t want to.  Forget it.

The doctor and I talked for the hour and the consensus is that we need to get an EEG to see about the seizures but that seizures or no seizures there is a definite mood disregulation issue with Rye so there are most likely both components.  I told him about that ‘going to California’ incident and he said that does sound more like a seizure.  He also said though that it’s important to be careful in comparing bipolar in children/teens to adults with bipolar becasue they don’t look the same.  Children/teens have more of a mood regulation issues rather than always the true hardcore mania/deep depressions that adults get.  And this does fit Rye.  He definitely has mood regulation issues.

We decided trying Depakote would be the next step to try and smooth things out a bit and help with seizures as well but he does not want to do anything until we get the EEG.  And we can’t get that until April due to our being between insurance plans right now and having to make an appt with a neurologist.  So, we will be our same selves for a while here [unless, that is, we had some local gladiator blood in which case we could try this.  But alas, we don't].

Anyway, we left and Rye was perky and pleasant for the rest of the night.

And he made it to school on time today.  That always feels like a great accomplishment over here.

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

Here’s the link:

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

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

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

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

[...]

“Maybe Medicaid kids are getting better treatment,” said Dr. Gabrielle Carlson, a child psychiatrist and professor at the Stony Brook School of Medicine. “If it helps keep them in school, maybe it’s not so bad.”

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

Eeek.

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

Gad zooks.

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

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

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

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

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

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

Whew.

A little piece of hope.

Anyway, I thought I’d list the ones we tried and when just for the record.

At 5/6 years old:

Ritalin

Adderall

Concerta

Strattera

Risperdal

A whopping combination of Adderall & Risperdal (as yes, even back then when something went wrong or the meds weren’t working they just said “keep upping the dose”) resulted in him becoming psychotic and then dropping onto the ground into a grand mal seizure (the whole event of which was terrifying for me)

This landed him in a psychiatric hospital at 6 where he was given:

Risperdal (yes, even after that had partially caused the problem)

Depakote

Lithium they were staring him on when I demanded they let him out after about 5 days and I’m so glad I did as even today he can recount nearly every darn minute of the time he was there and how scary it all was to him

From 6 years old to 11/12 years old:  No Meds

11/12 years old:

Adderall – started again to help with inability to concentrate at school.  And again, he ended up with a psychotic/manic reaction to this and this landed us on:

Risperdal, which caused him to not be able to breathe after a week

Seroquel, straight dropped him to the ground and knocked him out

Lamictal, made him super hyper within 2 days and gave him a rash

Abilify, did correct the psychosis and worked well for a while (about 2 months) until he started to complain of a stiff neck and started rolling his neck and that was the end of that as those “tics’ can become permanent overnight with no warning and stay forever even once off the meds.  The psychosis has stayed corrected (it is gone) though and he is back to normal.

12 years old: No meds

And so, this is where we are now and why we are on no meds.  And hopefully we will stay here indefinitely or at least until he is older and can make his own informed decisions but one never knows what the future brings.  At least now with Rye I know that everything that is happening with him is organic to him and not the meds or a med reaction or the meds reacting with each other etc. etc.  and this brings me a great deal of peace for now.

And it’s an interesting thought to me.

From what I have read, it is not to say that other countries do not have bipolar children.  Obviously, they do.  And, it is not to say that the symptoms listed as DSM-IV criteria for Pediatric Bipolar Disorder do not occur in children around the world.  Because they certainly do.  However, rates of bipolar diagnosis and subsequent medication of children in America seem to be disproportionately high as compared to those internationally – to the point that childhood bipolar is now considered by some to be overdiagnosed in America.

A study of bipolar diagnosis [corrected to note this study was done on adults] by Rhode Island Hospital and Brown University presented May 2008 concludes the following:

The study concludes that while recent reports indicate that there is a problem with underdiagnosis of bipolar disorder, an equal if not greater problem exists with overdiagnosis. The study was published online by the Journal of Clinical Psychiatry. Principle investigator Mark Zimmerman, M.D., will present the findings at the annual meeting of the American Psychiatric Association on Wednesday, May 7.

http://www.eurekalert.org/pub_releases/2008-05/l-ibd050208.php

Philip Dawdy, award winning journalist of mental health issues and author of Furious Seasons, also speaks about this in the following interview:

http://www.psychologytoday.com/blog/side-effects/200904/the-bipolar-child-is-purely-american-phenomenon-interview-philip-dawdy

The Wikipedia discussion of childhood bipolar notes the same phenomena here with each of the journal references they used numbered, noted and listed on the site, which is linked to in the numbers.

Another factor is that the “consensus” regarding the diagnosis in the pediatric age group seems to apply only to the USA. The British National Institute on Health and Clinical Excellence (NICE) guidelines on bipolar disorder in 2006 ^[135] specifically described the broadened criteria used in the USA to diagnose bipolar disorder in children as suitable “only for research” and “were not convinced that evidence currently exists to support the everyday clinical use of (pediatric bipolar phenotype) diagnoses” which increase the “risk that medicines may be used to inappropriately treat a bipolar diathesis that does not exist.”(p526). A 2002 German survey ^[136] of 251 child and adolescent psychiatrists (average 15 years clinical experience) found only 8% had ever diagnosed a pre-pubertal case of bipolar disorder in their careers. A similar survey of 199 child & adolescent psychiatrists (av 15 years clinical experience) in Australia and New Zealand ^[137] also found much lower rates of diagnosis than in the USA and a consensus that bipolar disorder was overdiagnosed in children and youth in the USA. Concerns about overdiagnosis in the USA have also been expressed by American child & adolescent psychiatrists ^{[138][139][140][141]} and a series of essays in the book “Bipolar children: Cutting-edge controversy, insights and research” ^[142] highlight several controversies and suggest the science still lacks consensus with regard to bipolar disorder diagnosis in the pediatric age group.

http://en.wikipedia.org/wiki/Bipolar_disorder

And Kiki Chang, M.D., director of the Pediatric Bipolar Disorders Program at Lucile Packard Children’s Hospital in Palo Alto, Calif. and a noted child and adolescent psychiatrist at Stanford University School of Medicine, addresses the question here in transcripts from the investigative video Frontline: The Medicated Child.

Question:  Why is bipolar seemingly such a problem for American children? Why isn’t it happening internationally?

Dr. Chang: You’re right. It doesn’t seem to be as much of a problem internationally.

We use medications in general a little bit more in the U.S., and people think that maybe that’s why we have more kids with bipolar disorder. For example, if you have a depressed kid in Europe and you don’t use an antidepressant, maybe they won’t develop mania; maybe they’ll develop bipolar disorder later when they’re adults, and then they become an adult with bipolar disorder, because the adult instance of bipolar is no different. That’s true worldwide. But what about the childhood incidence? Maybe in some ways we’re creating this disorder earlier in the U.S. That’s possible.

http://www.pbs.org/wgbh/pages/frontline/medicatedchild/interviews/chang.html

Consider the possibility.

Lack of sleep leads to melt down mode around here.   Lack of sleep can manifest itself as anger, irritability, hyperactivity, or sadness and crying.  And for us that was Tuesday.  Rye could not get up to go to school.  And once he did he was sluggish and grumpy.  We headed out and grabbed a breakfast sandwich (which sometimes helps) but as we approached the school he broke down into tears.  He did not want to go to school.  He claimed a bad stomach ache but I knew the truth.  He was just overdone.  And honestly, it’s quite sad to see such a large kid break down into huge crocodile tears over just going to school for a day.

So, once again, I rearranged my schedule and we stayed home.  And he slept for 5 hours during the day.  And then was asleep again at 9:30pm that night for the rest of the night.

And as of Wednesday it’s like he was a new person.  Perky, pleasant, able to cope, had a good day at school, did his homework, went to bed on time last night (even early actually) and was up and out to school this morning with a good attitude once he realized that tomorrow is Friday.

It’s all about the sleep, man.  It’s his life force and his most vital mood stabilizer.

http://www.bpkids.org/site/PageServer/PageServer?pagename=fd_pr_jan08

CABF, I think you do some good work but I’m concerned about your response.

You state:

Jacob’s family and doctors stand by his diagnosis of bipolar disorder 14 years after the initial diagnosis and his parents feel he is doing well. While Jacob experiences an unfortunate side of effect of his medication, he is alive, living at home, and enjoying his best year yet instead of being incarcerated in juvenile detention — an all too common outcome for many untreated kids.

This is heartbreaking for me to read.  Jacob has tardive dyskinesia and he is still a minor child.  He is permanently damaged and disabled from the medications he took as a child and continues to take.   He is so mentally distant in his interviews it is concerning.  Fortunately, now that Jacob is getting older and can participate in his own treatment, he seeking alternative treatments and working hard to get off of at least some of the medications.  And you think his only alternative to being medicated was to be in jail?  It seems irresponsible to tell people that.

My son was originally diagnosed as bipolar at 6 years old after a bad reaction to Adderall.  After a short stay in a psychiatric hospital (and only short because I fought like heck to get him out and he was released AMA), doctors tried to convince me that he too had a “debilitating illness” and must be  medicated to make it through life.  I didn’t listen.  It all just sounded wrong.  He is 12 now and did not have one more unmanageable symptom until we tried Adderall again.   And that too has now been corrected.

Is he bipolar?  According to his psychiatrist, yes.  He meets the criteria according to the DSM-IV.  Did he need to be medicated this whole time?  No.

And he’s not in jail and he has not committed suicide.  In fact, he has very high self esteem, tons of friends, and behaves no worse than any other 12 year old boy at school.  And, many of his teachers describe him as being mature for his age.

Now, we’ll see what the future brings.  He may need medication at some point.  And if he does, he will get it.

But I’d hate to see what he would look like now if we had believed his original doctors and bought into the scare tactics and medicated a very young, growng child all along.

He too may have been permanently disabled.

And, because of our situation, I’ve been reading a lot of books and blogs on child bipolar lately and one thing that really strikes me is…

When children are diagnosed as bipolar at a very young age and then medicated with various powerful medications almost continually for years, after a while how does anyone know who the real child is under all of the medication?

How does the parent know?  How do the doctors know?

Is it even possible that the child’s brain could develop normally while taking numerous psychotropic medicines?

How could it?  If a growing child is on medications that rewire and alter production of the neurotransmitters during the years in their life that the brain is growing and developing , how does the brain ever have a chance to develop normal or full potential neurotransmitter production levels and/or pathways?

It does not seem possible.

I read in one story how the child in question had been medicated since a very young age and was on numerous medications but when the parents took the child to the hospital to get stabilized, the minute the staff took one med away after a day or two the child’s symptoms would get worse and so the hospital professionals decided that the child really needed that med and put them back on it.

What???

Aren’t these trained doctors and nurses?  Haven’t they heard of withdrawal?

And why do we as parents place such blind faith in doctors?

Yes, when you get a child’s brain used to a powerful psychotropic medicine and then you remove it, things are going to get worse before they get better.  The same is true with adults.

Don’t the medical professionals know this?

I have to say, I believe in Early Onset Bipolar Disorder and I do believe that there are some children and teens that need medication (although hopefully as little as possible).  I worry though that with this new paradigm of childhood bipolar because parents are not offered any solution other than medication (which is incomprehensible to me), they are going to be convinced that their kids need to be continually medicated to make it through childhood and given one med simultaneously on top of another on top of another and then set the child up for a lifetime of major medication dependence (or worse, permanent brain impairment) because the child’s brain never even had a chance to develop correctly or even partially to its full potential.  I also worry that it child bipolar is being over-diagnosed and therefore kids who don’t even really need the meds are receiving them.

It just seems wrong.

Are children now diagnosed as being bipolar being raised on and thus being developmentally created to be dependent on medicine for life?

I worry the answer might be yes.

After all, no one knows the long term effects of the majority of the medicines now prescribed for childhood bipolar and therefore no one can say with any degree of certainty that the answer is no.