Note- I wrote this in April of 2007 and had intended for it to be the begining of a blog dedicated soley to our son Jason, who is developmentally delayed and lives about an hour and a half away in a group home .
That never happened.
Perhaps it will happen now, if I simply include Jason in this blog.Which is what I should have done anyways.Since I wrote this blog, Jason's meds have been altered quite drastically. He now takes far less mind numbing drugs and is much more engaged with the world around him. That comes with a price though, because Jason has the mind and the curiosity of a baby, a toddler, a child, a teenager and an adult all rolled up into one and all interacting with the world in seemingly random ways. I've come to think that nothing is random with Jason.
MEDS
Maybe it's not Fair to Start Here?
But is it? Here's a list of his Daily meds. You tell me if the continued consumption of all of this all day long every day might change the mind of the being inhabiting the shell inside? As I look for links to each med in an attempt to better understand not just what it is that Jason is taking, but why he is taking these meds, I wonder if the philisophy behind Jason's care is to basically keep him sedated and docile, and not for his benefit, but for his care-givers ... and without my really knowing anything about these drugs, a quick examination suggests that some of these meds are taken to counteract the affects
Risperdal
1MG Take One Tablet by Mouth Three times a Day for PSYCHOSIS
Zyprexa
5MG Take One Tablet by Mouth in the Morning for PSYCHOSIS
Chlorpromazine HCL
200MG Take One Tablet by Mouth at 3pm and 1 tablet at Bedtime for (anti)PSYCHOSIS
Risperdal
1MG Take One Tablet by Mouth Three times a Day for PSYCHOSIS
Oxybutynin Chloride
5 MG Take One Tablet by at Bedtime for ENURESIS
Pravachol
20 MG Take One Tablet by Mouth at bedtime for HYPERLIPIDEMIA
Chlorpromazine HCL
200MG Take One Tablet by Mouth at 3pm and 1 tablet at Bedtime for PSYCHOSIS
Imipramine
25 MG Take One Tablet by Mouth at 3pm and 1 tablet at Bedtime for ENURESIS
Desmopressin
.2 MG Take One Tablet at bedtime for Bedwetting
Some comments from People who have taken these drugs and CAN make a comment on them. So this is what is happening to Jason ...
First Column is the disorder that the drug was prescribed for, 2nd column, side effects and third is user comments. So I want to know why Jason is being treated for Psychosis?
RISPERDOL
| Asperger's Syndrome |
Extrapyramidal movements, erectile dysfunction, loss of libido, lethargy, gynecomastia, weight gain |
Works
wonderfully for autism related symptoms. After 8 years of use got
extrapyramidal movements that disappeared after Inderal added to the
mix. Weight gain was 35KG over the decade and only lost after a
intensive phase on a VLCD. Lethargy a killer (but not as bad as
Seroquel). Gynecomastia embarrassing as a teenager but tolerable.
Sexual issues crippling now. Any parent considering starting their
autistic child on this medication needs to seriously evaluate the pros
and cons of this drug, even if side effects may not manifest until
later in life. |
| psychosis |
Abnormal walk, Difficulty ejaculating, Impotence, Agitation, Difficulty urinating, Nasal inflammation. |
Don' t take risperdal for long time, the effects that i have described are irreversible in me. |
|
psychotic episode |
sexual side effects |
Works
but you pay the price. I have been off 4 months and sexual side effect
has not gone away. I mispelled the place that treats mental illness
with nutrition. It is Pfeiffer Treatment Center in Warrenville, IL. I
hope this helps someone. |
| Dr.s wanted my money |
I
felt tired all the time. Too tired to be depressed. I guess that's how
they consider this a successful drug. You just don't feel anything
anymore. But you don't feel better either. Your head is full of clouds. |
Reading
all the rave reviews about this drup I couldn't help but wonder if they
had been paid by the manufacturer. I was put on this junk at 16. That
was over 5 years ago when this was a relatively new drug. Admittedly I
don't know how long this has been on the market but I do know that it
hadn't been properly tested on young people. As such it should never
have been marketed to children. And the reason I was given this was
because I complained about bullies at school. Don't do anything to
improve my situation at school, just put me on drugs to shut me up. If
this drug helps you, fine. But if you've been given a prescription know
that it will not help if there are conditions in your life that are
making you miserable. It won't stop the bullies, the abusive parent,
etc. I told them the drugs weren't working and they wouldn't listen. I
asked them to re-evalute my diagnosis and aknowledge that were factors
in my life (not chemicals in my head) that were making me miserable.
Being tormen |
| personality disorder |
weak erection, chest pains, muscle twitching, weird walk, weaker knuckles, testicular pains, penile pains |
STAY
AWAY!! This crap is suicide. This crap made me feel weird since my dick
wouln't fully erect, it hurt after i ejaculated, i had pains in my
testicles and penis. Ive been off this crap for 3 months and am still
battling the side effects. If you need help, visit www.actionlove.com.
Dr Lin can help you detoxify and rejuvinate yo self. I am currently
using his products and they have helped quite a bit.....This junk is
poison....and it all started at 2 mg. I read that the side effects can
last forever....I am so pissed....DEATH TO THE CREATORS!!!!!!! STAY
AWAY!!!!!! |
Zyprexa
|
withdrawal syndrome from Celexa |
I
took Celexa, and had a severe reaction to it. I was removed from it
cold turkey (NEVER DO THIS OR ALLOW SOMEONE ELSE TO DO THIS TO YOU). I
wound up with panic attacks, tingling in my arms and legs, paranoia,
intrusive suicidal urges, etc...So my doctor gave me Zyprexa for an
"off-label" use. She said I had anxiety. The first couple of weeks were
okay, except I gained 8 1/2 lbs., and was having occasional twitches.
When I found out it is an antipsychotic, I decided to wean off of it.
The withdrawal syndrome from Celexa returned, and culminated in
akathisia, a severe neurological disorder which causes the sufferer to
pace endlessly and eventually leads to suicide if not treated. Not
knowing that Zyprexa can cause this, I returned to the doctor, where it
was reinstated. The next month was a living hell. I had burning
sensations in my arms and legs, I felt disconnected from reality, I
would wake up without a single thought in my head, I was knocked out 12
hours a day, |
Please
do not allow a doctor to convince you that you need this drug. Do some
research regarding psychiatry and "chemical imbalances". I studied
psychology in university, and there really is no proof that any
psychological disorders actually exist. Psychiatry is simply a way to
pathologize regular human emotions and behavior, and consequently make
a lot of people very rich. If you are having emotional problems, seek
the advice of alternative health care practitioners, or a doctor who
will run a full medical exam. AND DON'T LET THE DOCTORS TELL YOU THAT
YOU WILL SUFFER FROM YOUR "DISORDER" FOR THE REST OF YOUR LIFE. All of
these so-called disorders (unless caused by brain damage, or other
physical health problems, many of them treatable, such as
hypothyroidism) are transient, and usually the result of stress. If you
would not willingly undergo a lobotomy, then do not take this drug |
for more patient comments
Zyprexa is prescribed for depression, anxiety, bipolar disorders, and
Does Jason have any of these? With the side effects so extreme and so many patient comments in the negative, why would doctors prescribe this drug to Jason who would not be able to give proper feedback on what it is doing to him?
Chlorpromazine HCL
I cannot find any user comments on this, but it appears that this drug is being prescribed in an attempt to counteract some of the effects of the above two.
So What is Psychosis?
Psychosis is a generic psychiatric term for a mental state often described as involving a "loss of contact with reality". Stedman's Medical Dictionary
defines psychosis as "a severe mental disorder, with or without organic
damage, characterized by derangement of personality and loss of contact
with reality and causing deterioration of normal social functioning."[1]
Jason is develomentally delayed.
He is non-verbal. He communicates through gutteral noise and touch as well as through gesture and eye contact.
Mentally, Jason seems to fluctuate between that of a 3 year old and that which might be considered age appropriate. Jason is 28 years old. He understands that keys are needed to unlock a lock, he knows that seat belts must be worn inside a vehicle and he when done with his breakfast, he'll put the fork in the sink if you remember to stop him before he throws the paper plate into the trash with the fork.
But, he does not brush his teeth, he has great difficulty bathing himself, he has no concept of a gas flame on the kitchen stove and does not understand social dynamics enough to know that you don't get within a few inches of a large man in a bar, especially one that might look like he'd go out of his way to prove he is not a homosexual. Jason does not understand social contracts.
But is Jason Psychotic?
Perhaps the 'pyschosis', as described above, is the benchmark of his condiiton ... described as some form of Autism and perhaps a branch of Aspergers Syndrome, but one could also argue that Jason is detached from most of societal reality, because he is unable to communicate effectively, even though he can comprehend and understand most everything that is communciated to him.
What is Asperger's Disorder?
Asperger's Disorder is a milder variant of Autistic Disorder. Both Asperger's Disorder and Autistic Disorder are in fact subgroups of a larger diagnostic category. This larger category is called either Autistic Spectrum Disorders, mostly in European countries, or Pervasive Developmental Disorders ("PDD"), in the United States. In Asperger's Disorder, affected individuals are characterized by social isolation and eccentric behavior in childhood. There are impairments in two-sided social interaction and non-verbal communication. Though grammatical, their speech is peculiar due to abnormalities of inflection and a repetitive pattern. Clumsiness is prominent both in their articulation and gross motor behavior. They usually have a circumscribed area of interest which usually leaves no space for more age appropriate, common interests. Some examples are cars, trains, French Literature, door knobs, hinges, cappucino, meteorology, astronomy or history. The name "Asperger" comes from Hans Asperger, an Austrian physician who first described the syndrome in 1944. An excellent translation of Dr. Asperger's original paper is provided by Dr. Uta Frith in her Autism and Asperger Syndrome.
And what exactly are Pervasive Developmental Disorders?
The diagnostic category pervasive developmental disorders (PDD), as opposed to specific developmental disorders (SDD), refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication. The most commonly known PDD is (1) Autistic Disorder, with the remaining identified as (2) Rett's Disorder, (3) Childhood Disintegrative Disorder, (4) Asperger's Syndrome, and (5) Pervasive Developmental Disorder Not Otherwise Specified (or PDDNOS).[1]
ENGAGE the WORLD or RETREAT
Seems to me the current philosophy in Jason's treatment plan is to ASSIST HIM in his FURTHER RETREAT from the shared communal reality of PLANET EARTH.
Yes, It is difficult to handle Jason at times. He requires constant participation from those who are watching over him. If you turn your head for even a moment he will be out the door and down the street, likely in search of children to play with or trailers to unhitch from their tow vehicles.
He is constantly pointing at pictures ... especially of his step sister Holly ... for whom he adores. He will point at this picture over and over – and if by chance one is able to bring the two of them together, he will shy away rather than engage.
it seems to me that the proper treatment for Jason would be to work on ways to help him ENGAGE the world, rather than medicate him so that it easier to HANDLE him. It seems that the current medical plan is designed to DIS-ENGAGE him even more. Because he understands what is said to him, and because he has no means of properly communicating and because this is aggravated by his own mental deficiences, I'd imagine a great deal of frustration on his part ... this is sometimes a violent release; however, I believe that in more incidents than not, the escalation to violence was percipitated by signs and signals that is noticed could possibly have prevented the outbreak.
Admittedly, watching him like a hawk so to see these signals and signs can be daunting, if not impossible, unless a care giver is with him and him alone 24 hours a day.
Neither we, nor the State, has funds for this.
And so it appears that the mindset, at least from the State's point of view, is to Keep him perpetually sedated .. in this way Jason can not be a danger to society and himself, and given his limited mental faculties, still retain a rasonably good quality of life (especially in the context of his living in a propserous region of the United States.
So, while this might all be a great rationalization for the drugs prescribed to him, does Jason in fact have Psychosis in the degree/manner to which the drugs were designed ?
That question, I cannot answer. I would hope the answer is NO. But perhaps, this is precisely what these drugs have been designed to do.
So What is Enuresis?
Enuresis (say "en-yur-ee-sis") is the medical term for bed-wetting
during sleep. Bed-wetting is fairly common. About 5 million to 7
million children wet the bed. It's more common among boys than girls.
The OXYBUTYNIN that Jason is an anti-spasmodic, analgesic and local anaesthetic. I do not believe that Jason's inability to control his bladder is completely medical. I believe that just as he needs prompting to wash his hands, blow his nose and ..., he also needs prompting to use the bathroom. Simply put, he doesn't think about it until it is usually too late. This likely explains his night time bed wetting.
But there is another reason Jason pees.
Attention
In his arsenal of communication tools, peeing his pants is one of the tools he will use to get attention or make a statement. He knows what the outcome will be if he pees his pants during the day in public. it usually terminates whatever activity was ongoing.
Is this medicine necesary?
I don't really know.
Candace tells me that the frequency of Jason's outbursts and attacks on others has increased over the past months.
But is this is his fault? Again, Jason communicates primarily through touch. His world is a tactile world of touch and eye contact. He uses what abilities he does have to communicate his message.
And if his message is FRUSTRATION and a desire for INDEPENDENCE, and if no one is listening or paying any attention, what is his alternative but to use violence as a device. Add in the fact that he does have developmental disorders and a lack of societal obligtaion and approriateness and it's easy to see and understand why his outbreaks escalate so easily.
We placed Jason in a group home whne he was approximately 18-19. He was violent and we feared our safety. At the time, it was determined, through professional opinion paid for by the STATE, that the reason for his hostility was simply his desire for independence. Jason did not want to always be in our shadow, going where we went, doing what we did. He wanted his own life. After placement, the episodes stopped.
In the last few years, these episodes have begun again ... only this time round, the idea that perhaps he needs to be replaced does not seem to exist; rather, the thinking is to sedate him into a near zombie like state so that he can be managed easily, will not assert his will and be of little harm to those around him.
But, is this LIFE?
IS THIS LIFE?
So What is HYPERLIPIDEMIA?
Hyperlipidemia, hyperlipoproteinemia or dyslipidemia is the presence of elevated or abnormal levels of lipids and/or lipoproteins in the blood. Lipids (fatty molecules) are transported in a protein capsule, and the density of the lipids and type of protein determines the fate of the particle and its influence on metabolism.
Lipid and lipoprotein abnormalities are extremely common in the
general population, and are regarded as a highly modifiable risk factor
for cardiovascular disease due to the influence of cholesterol, one of the most clinically relevant lipid substances, on atherosclerosis. In addition, some forms may predispose to acute pancreatitis
Is Jason taking this drug because the other drugs have elevated his lipids?
Is Jason slowly being Killed?
Is Jason nothing more than the 'mouse' in someone's experiments?
And how long will we, his FAMILY, sit idle, and do nothing but pop these pills into his mouth, and watch the Life slowly fade away from what once were
HAPPY EYES ...
_________________
BLUE SKY EYES
I feel like I have so let him down. I have allowed my own petty whims and desires, wants and needs to have presendence over his. And here I, his own family, complain about those entrusted with his medical care, but have used the same methodology in my approach to him ... have I also allowed the idea of zombifying him to have a measure of tolerance in that his inability to voice his own opinion allows me to not have to see it.
But the mirror is not far away.
And there indeed times when I look into it and I see the Truth of what I am.
XMAS
a new start
And so now I take you back to December 25 of 2006. Christmas day started out good, but we all allowed it to disintegrate rapidly. Not a present was opened, not a word of love shared. And while there are reasons for all that happened, and valid as they might have been, we all ignored the one person who most wanted the day, and who least cared about the material gifts ... Jason.
Even in his medicated mind, he still wanted that day. I know he Did.
And we can still give it to him.
We can still give it to him.
Perhaps, what we need as a Family to do, is to give him that DAY at least ONCE a MONTH. We need to REAFFIRM LIFE
and JASON.
And we need to all sit down with the Doctor(s) and ask them
WHY
WHY
WHY
So Now You Know Jason's Meds
Now you'll better be able to meet Jason. And perhaps be a bit more udnerstanding of his world and how he moves through it.