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I've always said that stability is in the eye of the beholder, and means something different for every person. some of you may remember that we were able to get Dalton off Zyprexa last spring when we almost doubled his Seroquel. We also removed his Tenex, and the Inderal we had replaced it with as they were not doing much of anythign measurable. Then as summer began and school ended, we removed his Topamax.
When we took aways the Topamax, several things happened. His thinking was clearer, his languare was a bit more mature. he was speaking in more complete sentences and paragraphs. He was reading, and as school has started, he seems more ready to learn and is doing well at school. In addition, Dalton is making real friends more than in the past, I don't know that this is related to the Topamax, but who knows? However, on the negative side, his hyperactivity increased, and his ODD... We added Abilify which we had had a PRN RX for and had not used much, I really did not see a measurable effect. Hopeful thinking made me consider his activity and impulsivity may have decreased, but over the course of the summer, his increased steadily. Yet, he was still doing so much better in other areas, I did not want to make any changes for fear of losing the improvements.
I increased the Abilify to 7.5mg from 5mg, and I saw his anxiety become more. So, over the past couple weeks or so, weaned him off... No regression or worsening of symptoms, but maybe a bit less anxiety??? Another negative we have seen is that his toiletting (BM) issues have become constant. He rarely if ever uses the toilet for a BM, and is having accidents 3-5 times a day, including at least once a week at school. Gene told me a month ago we needed more meds for Dalton, I did not want to hear it... However, I had to conclude that he was correct. Definite hypomania, and we need to get a handle on it before spring.
Last week we did a lithium level and he is at .8, Although this is therapeutic, Dalton usually requires 1.0 to be stable, however, before we would raise his dose, I would want to see a 2nd level to confirm. Instead, I called the pdoc and asked that we add a MS to replace the Topamax, and asked for Zonegran. Dalton began 25mg last night, to go up to 50 next week, and then 100mg the following week. Wish us luck. I hope this works without dulling. I know this can be a good med, but we don't have many options to try since we have bombed on so many, and I don't want this to be another failure...
Gene and Dalton are out graage saleing this morning.... great activity for a manic kid! LOL
I almost forgot to mention that he survived ISTEP testing this week. I volunteered at the school two days, and then went on the reward field trip for the kids who maintained level and behavior during testing, to the zoo yesterday...
Dalton is academically 1st grade for the most part. He is being tested at 5th level! He did great to make it through. He was on silver level the beginning of the week. He had an incident in lunch line Wed, and dropped a level, he was hit and he hit back, but pulled it together for the remainder of testing. Also, since the incident was not during testing, he was able to earn back the field trip and move back up to Silver.
It is awesome to watch him with his class on trips. He is not clinging to me the entire time, he is less overly affectionate with me, Yes there can be too many hugs and kisses! And he has made friends. He made it through the entire trip without a single incident. The classmate who he had the Wed incident with did not. The bus left without him and the behavior teacher when it was time to go as he lost it last minute!
There are good things. I wouldn't consider Dalton unstable, but definitely less stable than we would wish... It is hard to draw the line between stable, manageable, and stable, but needs improvement.
Dalton is not Schizophrenic, his primary diagnoses are Bipolar FAS, and PDD, but there are many similarities in managing different mental illness in children, especially while they are minors. I thank God that I am able to do this while they are young and hopefully avoid major issues as they become adults. there is a blessing in all things if we look for it.
And life goes on....
I hate med changes, and I brought this one on myself. Would I do it again? Yes, in a heartbeat. I want to have Dalton stable on as few medications as possible. We have needed to reevaluate his medications for a couple years plus, now, but then we were going to move, and we did not want to upset the apple cart before we did so. Then, transition of the move, and new school and spring all hit the fan together... Next, it took us four, yep! that's right! FOUR tries to find a psychiatrist in IN that I felt reasonably comfortable with. So all that time, we remained in holding pattern... Then, big brother fell to pieces. As David's behavior became more and more volatile and psychotic before he was stabilized this spring/summer, needless to say, it was not the time to really mess with things too heavily... However, as Spring came and went, we did begin to make some changes.
I believe we are on the right track with Dalton's meds, but I hate the cycles we see in Bipolar illness and the behavior that goes with it. he is doing wonderfully in so many areas. Areas that I once had little hope he would ever do this well. Socializing with other children, not family, is one. Overall picture of behavior at school, another. He is gaining academic skills, finally learing to read and actually made a year of progress last school year! Though he has moments of difficulty in all these areas, he is making friends, and is respectful in most cases. Unfortunately, when his moods are cycling, this is when I see some of the old attachment fears surface again. Like the boogeyman, they come to haunt this family and him. I think the thing I hate most about mental illness and prenatal brain damage, is that there is no cure, there is chance to have it all disappear and go away long term. Although this is a very manageable illness, you have to manage the symptoms. You have to always be aware of you child's mental state, and be proactive to avoid disaster. In other words, parents... mothers... I have to be hypervigilant, constantly measuring and evaluating the symptom load in the house and take appropriate action.
I ask myself, how is this different from parenting in general? Other parents are constantly doing the same, aren't they? And I guess the answer is yes, but the intensity level is different. The tolerance level is different. They may see a few of the behaviors we see, once in a while, but not constantly. It is this intensity, and frequency that is so wearing...
I am still hoping and praying that the Zonegran helps to level Dalton's moods. I can feel my interal voices telling me, that this is not nearly as bad as things have been in the past, what am I feeling so stressed over? Yet, the stress is palpable, all the same.
Dalton, aka "Beavis" got off to school this morning. Thank the Lord. He is not aggressive, he is not cursing, yet he is obstinate, oppositional, passive aggressive, which is in many ways more difficult to handle for me than the typical history of explosiveness and aggression. He refused to do his homework, but then as the timer went off that I had set to indicate the amount of time he had before the bus was to come, he got upset and shut down that he was going to do it, "If you touch it again, I'll break your neck!" He had pushed his meds across the table and kicked his shoes across the room, but I managed to cajole him into a smile and downing his meds. He got his shoes on in one minute flat, without untying them! He beat the timer by 4 seconds, with a "See, I beat you, so there!" Again, he refused to relinquish his paper to be put in his backpack as he was going to "Do it"... Asking me if he could go the toe Dollar store after school...
I had told him that, yes, he had earned a trip to the Dollar store, but to go on a specific day, he has to do what he has to do... He still gets the trip, but it will be on a day when he makes it through school without incident and gets his stuff done in time for the bus in the am. Yesterday he had a -10 pts on behavior for profanity in the last 30 min of the school day... Today, he did wasted his homework time with the oppositional behavior... I told him if he does well at school, we can do french fries at the McDonalds, but the store waits for another day. Of course, this was met with a "No, I won't!"
The bus had to wait for him to get moving from his shut down pout at the kitchen table, I managed to get him walking with a "threat" of discipline if I had to take him to school. He took 2 inch steps to the bus from the door to the yard, dropping his back pack every other step, but would not allow me to carry the pack... the bus drove away with him head hanging low, dejected, non-verbal, shut down...
I called his teacher to inform her of his moodines and hopefully, he will be able to have a good day. If they know what is going on, they can usually be proactive and he will pull out of it. I hope so. This is not a crisis, but is almost more tiring...
On a good note, he has poo'ed in the toilet twice, Saturday, and yesterday! typical of this mixed mood state... ups and downs. I need to focus on the ups, I know this, I know we will get through this... Fingers crossed and prayers lifted here that this will not take too long. I hate the way these times make me feel, and I feel so sorry for my baby. I just want to and I cannot. It is a powerless feeling.
I knowt hat removing the Topamax was for the best, there have been too many positives to think otherwise, but the process of finding something to handle the symptoms that this med was covering without pulling back the negatives it caused is a major PAIN!
Wish us luck and send the prayers for sanity...
Thanks for listening, if you got this far, I did not intend to be long-winded, but sometimes putting it in writing is therapeutic.
In a world of his own, he exists
In a universe of his creation, he awaits
In a galaxy of possibility, his mind resides in joy
Inhabiting a sphere unknown to man
His fingers flutter sequences designed
Constructs from the genius of his mind
Assembled from the concepts hidden from our austere view
Reality�s perception transformed to something new
His gaze, which seems unfocused, is intent
His sight, appearing blind, sharply aware
He lives within our sphere, a guest to be held dear
A treasure, undeserved, placed in our care
A flicker of attention brings a smile
Fleeting 'cross his face belike the wind
His soul, a thing of beauty, untarnished by life�s pain
Endures to shape humanity serene
*** Remember that even when our children may be acting as termangents, they are a special gift from heaven. Treasure each precious moment... ***
We always knew that there were members on both sides of our family, Gene's and mind with mental illness. We just never considered the possibility that this illness would affect our immediate family in any way. Aware of mentally ill extended members, gave stories which were different. Stories we could compare and find common ground with each other. Stories that were if not humorous, were anecdotal uniqueness of the differences in perception and reality.
For Gene, the most apparent factor of MI affecting him personally was growing up with a mentally ill mother. Years after the fact as searching for answers and history with David's diagnosis, we found out that she had a dual diagnosis of bipolar and schizophrenia. We always knew the bipolar diagnosis, and for this reason did not think of SZ being a factor from his family, in finding David's diagnosis. Gene's mother's illness resulted in his parent's divorce, 25 years after she was diagnosed. She did not comply with any one doctor's treatment, but we found after she committed suicide that she had multiple docs, all rx'g meds, and none knew of the others. She took whatever pill took her fancy when she wanted to... Scary.
His mother had tried to commit suicide over 10 times. He recalls her being hospitalized more than once as a child. When he was 14, he was cleaning his shotgun, he had gone hunting. His mother called the police and told them he was trying to kill her! His older sister was able to explain to the police. He ended up living with his brother and new sis-in-law for a couple teen years as he could not live with his mother's illness.
When I met his mother, she rarely did anything but sleep in a rocker, sedated from medication. She committed suicide the night after we had announced our wedding date. His sister found her the next morning.
His grandmother and her mother spent the last several years of their lives catatonic. The stories, they did noting but sit in a rocker for years, except to eat and sleep.
My paternal grandmother was classic paranoid schizophrenic. We just knew that she was different. That's all that was really said. My grandfather pretty much lived in his car for many years... Grandma hated, was terrified of men, so he did not sleep at home often. He always made sure she had food and what she needed, but she would never take medication. I remember that all Grandma would eat was Wonder white bread, Buddig beef, opened and spread out on a plate uncovered in the fridge to dry, and stars peppermint candies. She liked salami as well, but would always pick out the peppercorns as she was deathly afraid of anything black.
Grandma talked to people who were not there. I remember she had a 1950's calendar with pictured advertisements with women. These were Grandma Mary's friend. She had several names she used, usually adding "Blue white" as a middle name. She was very focused on cleanliness and whiteness, purity. She bathed her children, 4 boys, in bleach when they were young! My father ended up being raised by my mother's parents, unofficially as a teen. They were foster parents and he lived with them for a while. That and the minister of the small church they attended acted as surrogate parents in many ways.
I remember visiting my grandmother. She always talked about being afraid of the little black bugs. She used to band aid the cracks of the plaster walls so the house would not bleed. I remember she once asked my mother how she could stand to allow my brother around, wasn't she afraid he would kill her in the night? My brother was 6.
One summer, the temperature was about 105 degrees, not a cloud in the sky. Grandma had walked 5 miles to our house for some reason, to visit. She wore a rain coat, galoshes and carried an umbrella, because it looked like rain! We were just sitting down to lunch and my mother told us to say our prayers. Grandma said "Yes, be sure to pray to your mother, she feeds you every day."
When she was pregnant with my father, they did not know. She was given EC shock treatments then. Grandma dies when I was in college. Grandpa had to move a trailer onto their property, the house was condemned. Grandma refused to move, and he finally had no choice but to admit her to a sanatorium. She refused to eat and died.
My father was dx'd as bipolar years ago, when I was in 6th grade, he was also told he had a very mild seizure like disorder, again for which he has refused treatment. I believe this is an accurate diagnosis, but he did not like the way Lithium made him feel. He also wanted nothing to do with anything that would liken him to his mother. He never took meds. He has classic highs an lows. He is extremely intelligent, always kept a job, but his grandiosity has often prevented career success in the past. He would work always, but he would sleep all winter when not working. when he gets something in his mind, he pursues it with obsessive, manic intensity. As the years have passed, he has leveled out a bit. Two of my uncles were alcoholic and have passed away. The other uncle would almost qualify as Asbergers, though never diagnosed. He is a very isolated personality. All the boys were dressed as girls until their fifth birthday. Grandma wanted a girl so badly... My grandfather got them a haircut and pants before they entered school in kindergarten...
I look back on these memories and stories and wonder... But this was just part of family, they were different... but they were our family...
In retrospect, it makes me wonder about David's future, but then again, it was awareness of these stories that allowed me to question and get correct diagnosis for Dalton after his adoption. It was Awareness of Dalton's issues that helped us to recognize David's illness. Being part of a family with our history, I know that there is no reason to fear these diagnoses, but that talking about the illness and acceptance of it as part of reality is part of accepting and loving all of our children and family.
My memories may be different, but I remember them with fondness.
OH the agony....... Well, it is officially week four of David's night classes. He is doing well in his intro to business class, he got a 82 on his first quiz... he had his first history test last week... Accounting is a nightmare. I had my doubts about the amount of homework for this course when he signed up for it, but Gene was for it, David was interested, and I did not want to be the nay-sayer.....
I know accounting. I have a degree and my CPA. I can explain the information, but The homework is increasingly overwhelming in quantity with each passing week. I do not think there is a way around this. Last week was rough to get through the homework. Yesterday was two hours of H*LL and he finally finished one problem. He has class this evening, and has one more problem to do. This problem is very detailed. basically opening the books for a new business, the opening transactions, the adjusting entries, the financials for that month, the closing entries...then repeat the process for the next month. he has reached mental overload and paranoia/explosiveness. I hate this illness. I think I am ready to have Gene talk to him about the realities of being unable to do this level of a course for now, drop the class and eat the $$. Education is not worth peace!
Right now David is in the other room telling me that he hates liars, he does not like people who are liars... but he in incapable of accepting help. The minute I try to explain anything, he explodes verbally...
Stability does not mean cured! There are limitations. I wonder even being stable if a college degree is in David's future? Oh well. Thanks for letting me vent... Tomorrow is another day. Technically, though the problem is due tonight, he has until next week to turn it in. maybe we'll try one more week.
Have you ever watched a rabbit when it knows it has been seen�
When the danger bells are sounding with alarm�
When he stops within that instant, and he hopes to disappear
Freezing, in that moment, locked within his fear
Or that deer caught in the headlights look, fleeing through his eyes
When arrested there in time he cannot breathe
Staring, yet unseeing, undetectable to self
His heart in shredded terror on his sleeve
When a petrified event is the juncture of his mind
Suspended from ability to think
Where his reason flown away, lays deserted in the quay
Drowning in a well of bilious ink
Overwhelmed and overstressed, he is overcome with grief
Stationary, still, immobilized
Traumatized he cannot move, shocked by disbelief
And you watch his spirit shrivel up and die?
The helplessness is heartbreaking�
Blessed are the meek,
for they shall inherit the earth.
The very word brings security
A wealth of comfort
A breath of peace
Strength is a foundation
A support, upon which a life can stand
A shelter to protect and shield
Defense from insurgent forces seeking to conquer
Strength is not force
The words brings fear
Fretful apprehension driving peace from mind
A storming tide to wash away the sand
Beneath foundation�s stone
Delivering death of hope
Force is not strength
This is a special word
Its use often misused
Thought of to mean weak
Mildness to be rued
Yet meek, is truly strength,
Strength under control
Power owned and leashed, bowing to the goal
Held at bay by mind, submitting to the soul
Of heavenly command, bending to the rule, of kindness
In face of hate
In face of might
In face of force
Meekness is the ability to rein emotion with attention
Thought, empowered by God,
May we all be meek, in the face of our children.
May we show them godly love and forgiving.
Meekness is not weakness. It is firmness, solidity,
a foundation delivered with a whispered breath of peace.
It�s who I am
I want to be
I own my destiny
This is my world
My erstwhile hero
Rare yet half-done
My own reality
Is mine alone
He is �I am�
He so loved me
He is the sovereign
He gave to me
It stands for edging
It stands for God
It stands for out of me
EGO: Edging God Out
Must learn humility
It is my choice
Spirit�s in Jesus� hand
He makes me whole
I wish I were an angel who could fly into your dreams
To wash away your tired tears and clear your angered screams
I wish that I could calm your heart with soft and silken words
Delivered on the melodies of sweetly singing birds
I wish that you would never feel the need to run and hide
From all the qualms within your mind, secreted deep inside
I wish that you could only see the heavenly display
That filled my soul when you were born upon a special day
I wish that I could heal your pain with but a single kiss
Which fallen on your velvet cheek would bring your spirit bliss
I wish that you could feel the joy your presence brings to me
For one transitory instant when you could simply be
I wish that I could make your sorrow vanish in the night
By exorcising agony eternally from sight
I wish I had a way to comfort your intransient fears
To bring you quiet for a spell relieving you from tears
I wish I had an answer for the reason that you feel
That no one cares if you should die, while wondering what is real
I wish for resolution, for a heartfelt remedy
As finding myself broken when you say a prayer for me
I wish and cry, I wish and pray, I wish you had a chance
To live your life without this dry and desolated dance
Yet all my wishes are for naught within the greater scheme
Designed by time, by fate, by life beheld within the theme
That God ordained to be the goal you were born to achieve
And give you up to heaven, putting faith in him to save
You � My child � My son �
Every strand of hair upon your head was counted
Every leaf upon the tree has shown its face
Every shadowed clouded form has been added to the mark
Tallying the blessings in your name
Every smile has been forecast before your birth
Every tear that you have shed already fell
Every hope and frail desire was known within the mold
Forming you to be the �Who� you are
Every choice you�ve had to choose from here was seen
Every path which you could travel was laid out
Every moment of your life was ordained before the cry
Announcing your arrival on this earth
But the way you style your hair is yours to choose
The cut, the length, the shade, the very hue
And the path through clouds or sun, on which you choose to run
Is a choice that has been left alone to you
To smile or cry a tear is your decision
The result of your selection for the day
And though your heavenly Father would love to lend a hand
His opportunity to do is yours to say
Fate, we often blame for fear or shame
Simpler to disdain than owning fault
Created for a purpose and a reason
Our desired destination, ours to halt
From the Potter�s hand our bones and flesh were cast
Intended to reside with him, to last
Every thought within our minds designed to fit the bill
Is hampered only by our gift�
- - - - - - - - - - - - - - - - - - - - - - - - - -
The greatest gift that God ever gave to man is the greatest challenge that we'll ever know. Regardless of the experiences we may endure, be they good or bad, simple or difficult, the one thing that separates mankind from all other of God's creations is the gift he has given us... The ability to choose, freely, how we will respond to life. This is the greatest lesson that each of us has to learn, and the greatest challenge we have as parents: To teach our children that no matter what they have been through, no matter what has been done to them, they can choose a different path than their environment would indicate they will walk.
Free will is a blessing and a curse. When we make a concious choice to choose, we become responsible for the results of our decisions. What a blessed challenge God has given all of us!
Eye of the storm�
She sits within the center of the room
Chaotic screams surround her very breath
Proceedings from the fractured day lay strewn
Beneath her feet and burdened on her chest
She is the calm inside the winds of pain
The cooling peace within the fiery blast
A mote of dust, which landed, lays quietly at rest
The stillness at the axis her home
Outside the world is swirling in the night
With tempests borne of unremitting rage
Coiling �round the quay and drawing ships to drown
Luring weakened souls into the gale
Still yet, her arms bring shelter to her kin
Enveloping within a safe embrace
Of comfort offered fiercely, along with all her love
Oblivious to jeopardy or place
An island cushioned, wrapped in cotton wool
Fixed steadfast, firm, against the crashing seas
The anchor stone within foundations wall
She is the framework for her family
In the quiet, in the dark,
in the undiscovered depths
Deep within the caverns� grasping, gasping breadth
Trapped alone inside a view
of twisted tortured song
Her soul, her mind, her will seems to have flown
And laying in the ebon space,
listening to her pain
Reverberating with each clenching pulse
Her tears are drawn up through the well,
beleaguered as they fall
Sketching imprints of a heart forlorn
Sightless eyes where windows
once opened to the day
Are blackened and are broken under skies
Where huddled shuttered, desperate
her joy has gone astray
Mislaid, her sheen has vanished into night
Sitting silent, lost in thought
A subtle sound was heard
Barely making waves upon my mind
Its secret stroke brushing soft
A muffled whispered breath
Searching for affection on its climb
And passing by my present
To futures yet, unknown
Message so essential to my time
�twas only by the grace of heav�n
The import caught my ear
Rousing weighted pressures intertwined
Colored shirts like flowers covered the terrain
In bunches as they gathered on the green
Voices sang with pleasure roving with the call
Of shining orbs of glory where they fall
With bats of blazing silver, with heads of tempered steel
The goal shone like a beacon on the hill
And lifting application, imbuing subtle might
The glowing hail of beauty leaned to fly
Shots rocket like an arrow into the grassy knoll
Reflecting sunlit rays upon the shoals
Whose gaze projects their wonder in adoration�s tune
As songs of laughter, joyously were hewn