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 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.

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.

A dance of emotions.  One day up, the next day down.  Normally for us this dance is manageable.  Up and down, yes, but manageable.  This dance, however, is exaggerated and heightened by change.  What are normally reasonable swells of emotions can become consuming, larger than life, dramatic, powerful, intense crashing bursts of energy.   This was where we were last night.

The over stimulation and anxiety of the school change had built to a roaring crescendo in Rye.  Like a tea kettle that builds with steam, last night was his blast off.

And man was it tiring.

Tiring to the point that I told him we might need to look into Lithium, medication beyond the supplements and Benadryl we currently use.   He wants to wait though.  He says it’s the change that is affecting him so much and he will adjust.  And he does not want to medicate his emotions away (his words).  We agreed we would wait and see if we could get this rollercoaster under control in the next few weeks.  And then we will reevaluate.

I, too, don’t want to medicate his emotions away.  But I also don’t want him to be controlled by them.

I will honor his request and hope that with him having adequate down time, getting used to the new environment and getting on a reliable routine, things will calm down again.  We’ll see how it goes.

Luckily he had a friend with him most of the day which helped distract him and ground him some. And I have to say, God love his friends. They really accept him as he is and often put up with a lot from him. I can’t imagine where he’d be without them. I mean he has a million positive attributes and is a very fun, loyal, compassionate good friend over all so I guess they find it’s worth it to them.

Anyway, as the day drew to a close and I needed to wrap things up I looked at my options. They were A) club him over the head and call it a day, B) throw him back on medication that I said I’d try to do without for a while, or C) look to my new “natural” way of working with this situation.

I opted for C, for now. First, I gave him 2 tablespoons of children’s benadryl (the liquid one). Ok, I am cheating with this one. I know, it’s not natural. But it’s not a heavy hitter either and it does wonders for helping Rye relax and mellow his mood. We call it our poor man’s mood stabilizer. And honestly, I’m pretty sure Rye has a histamine imbalance so I think this helps in some way. I have noticed in my reading that many antipsychotics work on histamine receptors as well as dopamine receptors etc. so there must be something to this.  In fact, in review of this post I just found this:

http://www.counseling.txstate.edu/resources/shoverview/bro/psychmed.html

Well, what do you know? Benadryl is considered an anti-anxiety med.  I had no idea.

Second, I remembered that Epsom Salts are supposed to be good for relaxing and we had them in the house so what the heck, let’s use them. I looked up Epsom Salts and anxiety and found these sites that convinced me all the more. Apparently they are quite popular with parents of autistic children to calm their mood swings. The magnesium works to relax the system and the sulfur helps to bind with toxins to eliminate them from the body. Also, the one site states that in as much as like 90% of children with hyperactivity they are found to have a magnesium deficiency. Well, this would have been nice to know a hundred years ago when he was first diagnosed with ADHD.

http://www.naturalnews.com/026782_magnesium_food_adhd.html

http://www.thepeacefamily.force9.co.uk/epsom.html

http://www.ei-resource.org/treatment-reviews-%11-other/complementary%10alternative-therapies/epsom-salts-(magnesium-sulfate)/

So, we gave him the benadryl and the bath and between the combination of the the two the anxiety monster settled in for a few minutes of TV after his bath and then was dead asleep by 9:30pm.   It worked.  He slept peacefully through the night and woke up in a good mood.

Whew.