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Shining rays sift over clouds
and sing serenity
Dappled dreams of quietude
deliver calm to me
Upturned windows of my soul
pursue the shadowed shade
Questing for a remedy
to lift a life from ache
Fingers drawn thru silent gloom
demand that darkness flee
Glowing glimpse of angel wings
destroy obscurity
Tenderly translucent grace
proffered from pure core
Leads my lame and battered life
to take a leap and soar
Silent tune, a melody,
whispers ecstasy
Adoration glowing there
of love for you and me
Risen atmosphere I feel,
revelation, whole
Aspiring cultivation of
the patience of my soul
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There is always hope if we seek to look for it.
God is always watching over.
We are never alone.
All he requires is a request for his presence.
He is perpetually at our shoulder, waiting
to lend a hand of comfort and guidance.
Our visit with David last evening went better than therapy with his worker did, for him. He was calmer, still very unhappy, but resigned that he had no choice but to stay. He had just woken from a nap and was a bit groggy, but seemed to wake ok. They had ordered pizza for dinner, instead of the regular hospital food, so this was a plus, as one of David's major beefs with the stay is the *&*&*! food. He ate 4 slices and bread sticks. I had told him I would bring his Great Gatsby book, but was unable to find it, so I took him a bible and "40 Days of Purpose" book. He did not seem upset. Gene went in for a while as well, and this visit went better for both of us. David did not get agitated and threatening escape as the day before.
Before we left, they let me back in to say goodbye and give a hug, and the nurse on staff was a bit more flexible. She let Dalton sneak in past the door and give David a hug as well. I think both boys were pleased at this.
I have promised that I will make BBQ Brisket when David gets home from the hospital.
Today, I called to confirm, and they have started Clozaril! I pray that this works, but things seem to be getting better, at least going according to plan.
There is always a light, no matter how dim, if only we seek to find it.
Mothering�
She sits enjoying peaceful afternoons
Chatting at the fringes of her mind
Restful - Comfort - Prayer
Chaotic waves intrude upon the silence
Awakening sensation prickling skin
Alert - Vigilant - Worry
Anxiety invades and grabs control
Adrenaline rushing thru her breast
Screams - Tears - Fear
Racing where she seeks to intervene
Hoping she can stay the brewing storm
Hurries - Stumbles - Fails
Attaining site of peace� obliteration
In desperation diving into blaze
Inferno - Fury - Burns
Dividing, disconnecting valued foes
Striving to protect from grievous harm
Partition - Separate - Depart
Combatants field, destruction of affection
Sirens come to staunch the flames of pain
Anguished - Misery - Despair
Excursion to bequest a residence
Of asylum from the thunderstorm
Rage - Blame - Hurt
Salty streams incinerate her soul
Desolation piercing loss of hope
Love - Pain - Prayer
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I was on the run all day yesterday, what with Dalton's field trip which went wonderfully, and then hospital visit, Gene was buying new cell phones for his office and for us, then I got new glasses. I guess in some ways keeping too busy to breathe is a coping mechanism...
Anyway, we did visit with David last night. I had misread the information and they will not allow Dalton to visit, so Gene and I split the time (all of the 45 min allowed) and saw him.
David is very upset, depressed, he hates the place, nothing to do, he was awake at 5am yesterday as he got a roommate early, and was unhappy that they do not let the kids out of their rooms until 7am. then they have 2 and a half hours "Room" time in the afternoon. He had noting to do. I made sure that he talked with the unit nurse about the books they have there, hopefully he will choose one. I also found out they do not have a complete deck of playing cards, so I told them I will buy some and "Donate" them to the unit, so David can "check out" a deck to play with while in his room.
It is heartbreaking. He wants to come home. he is convinced that we are doing this to punish him, and he does not intend to hurt anyone. I know this, but tried to explain, it is not that he wants to do these things, but that his irritability level and ability to cope isn't there... He was telling me he does not trust anyone there, that he will not stay a moment longer than he decides, that if he has to he will break the glass in the door and get out. I explained this was a choice he could try, but told him it would be a bad idea. I mentioned the isolation room and restraints they had mentioned when someone gets dangerous and will not be redirected... He said he could get out of there, and out of the restraints... Then I tried to explain again, that if he chose to fight that way, they would likely end up giving him a shot to knock him out for his and their safety. David said if they touched him with a needle, he would punch whoever in the face...
I know he needs to be there, I just pray that we will get what he needs and we want from this. He is all concerned about failing school, that he cannot keep up with his work.
**He hasn't done hardly any work in 5 weeks!**
I took his Saizen (hormone) shot to the hospital last night, and he was adamant that they would not be allowed to give him his shot. I cleared with the nurse that she will watch him self administer.
We have "Family therapy" this afternoon. I found out this is not a meeting with the doctor, but the social worker. Evidently, I may not meet the pdoc! Everything is to be relayed thru nurses and soc worker..... I don't like this part! Hopefully we can get our questions answered and some comfort level of what is to happen. I don't like the feeling we have about all the questions about his hormones causing his symptoms, etc.... I am picking up a letter from his therapist re: his history, treatment, and med plans..... She explained, as I knew, that they can make themselves available for the hospital, but they have no power there. We don't want to alienate the hosp pdoc and have them go the wrong way on treatment. David is very upset, because "If they really cared about the patient, they would make sure his pdoc was allowed to be there and do his treatment, and he does not trust this quack!"
He did not like the doc, said was very impersonal, and fixated on his line of questioning and refused to talk about anything else.... The agitation and paranoia are in force. I am just praying that they don't try to rediagnose him...
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Update: We saw the social worker today with David. David is very symptomatic, agitated, and vocally upset. Given where he is, I guess this is a good thing. I was pleased to hear from a church friend that the pdoc David is being treated by, is her daughter's pdoc. She likes him a lot. Also, I was told that they had not made any changes yet as they would like to confirm with David's OP treating pdoc, that clozaril is on, approved, and they will follow up after he exits the hospital.
I guess I was worried for nothing, but Way back in the early days with Dalton, we had a horrific hospitalization experience. I guess I am a bit PTSD!
Anyway, I brought the letter from his therapist, Jen, and even though Davids pdoc is on vacation, I think the letter was enough to soothe the hosp pdoc's concerns. The plan is to start him on Clozaril tomorrow, and "Maybe" He will be able to come home early next week. Fingers (and toes) crossed here.
David was in with us for a while. He was VERY unhappy to hear he was going to be staying a while more..... He got agitated, verbally loud, cursing....etc.... I pray that this medication works where the others have not. I am so tired of this for him and for us. If this med does not work. I have no idea what the next step is.
Mountaintops have scraped some scraps from heaven
Which fallen on the ground beneath my feet
Have blossomed into glorious, holy beauty
Whose blinding heat can cleanse my darkest seas
Within my heart, I yearn to gather flowers
Each tiny scrap which fallen from my Lord
Unworthy, I am hesitant to touch them
Broken, shattered, here my soul is torn
Crying tears of abject desperation
I feel a warmth begin to softly glow
As raining shards of heaven�s sky are falling
God saw fit to make my life his own
His son adorned my soul with purity
He paid the price for me, it wasn't small
Worthless, though I am, he thought me worthy
Heavenly bouquet forgave it all
I don't have much time this morning. I am supposed to accompany Dalton on a field trip today.
David had another incident last evening. He brought two friends home last evening against my better judgement, then they stayed longer than supposed to do. David was edgy on the phone when he called from school and again when I talked to him about it being a school night....
Dalton had gotten home and joined them in the basement, everything was fine for a while. I heard things getting loud and in the few moments it took me to get there David was making threats to beat Dalton to a bloody pulp, beat him into the floor, he should have the right to hurt him..... Dalton had gotten upset at something David had said in response to something he said to tick David off.... Dalton threw a chess set of Davids and a couple pieces broke. I turned for a moment to see if the set could be repaired, when David lunged for Dalton fists clenched, grabbing, and such an intense look, I know he would have hurt him.
I stepped between them, Davi let go, Dalton ran to his room, and I called the cmh. They told me to call the police as David came flying out of the house screaming Fu**** this and whatever very loudly. I was standing on the front step.
We were told the would not transport by the police, but unlike other incidents, David was agitated with the police, and ecen though the whole admit process took almost 4 hours, he was agitated w/the intake person. The police refused to transport and we had to drive him in, but they did call to let the hospital know we were coming. Still it was almost an hour before anyone got to us!
He was calm when I left. I hope he understands why we took him there, by he was resigned to the fact it was happening.
This is the only time David has ever been hospitalized! I hope I did the right thing, I know I did the right thing, but it does not feel right....
Please keep him and us in your prayers.
Having dealt with Dalton's bipolar mood cycles for several years, I have become very familiar with changes in sleep patterns. This often heralds a shift up or down with times of stress, changes of seasons, and sometimes, for no apparent reason at all.
Typcially, as time passes, it is common to see an emerging pattern of less and less sleep being necessary. He feels good. Almost, too good! We find him going to bed a bit later, then, as days pass, he begins to fight bedtime a bit. He will not go to his room without a fight, unless Gene and I are heading to bed as well. Next, we begin to see him waking earlier in the morning. This is always interesting as it places both boys awake and moving around in the morning as David is supposed to get ready for school. It also means that Dalton has usually turned the television on before he is ready for shcool. Unfortunately, this leads to a struggle to get ready, since his attention is divided. Strange as it may seem, I have a much easier time waking Dalton 40 minutes before the bus is to arrive than I do if he is awake 2 hours before the bus gets here. With the shorter time period, I am able to control the sequence of events, once Dalton has some control, we're lost.
Coinciding with this decrease in sleep, is a general increase in irritibiity, oppositional and defiant behavior, resistance to authority, mouthiness, and even aggressivity. Though Dalton rarely gets truly manic anymore, these times are hallmarked by an increase of hypomania, that should we be unable to get a handle on it, could easily escalate out of control. Thank God for his Lithium and Seroquel!
His typical pattern of cycles have evolved to show a 1-2 weeks timeframe. As the cycle begins its' ascent into mania, and his gradiosity escalates to boundless proportions, after about 5-6 days, the inevitable descent will occur. After approximately 5-6 days of too much sense of self, we see a afternoon of respite! Unexpectedly, without warning, he will come home from school and simply crash. He will fall asleep before 5pm, never to surface until the next morning.
Sometimes these sleeping jags, may last a couple day, and then evolve into long naps, to culminate into a more normal pattern. I find these sleeping periods to be God's gift to us parents so we can recuperate from the additional excitement from the preceding week. For Dalton, the additional sleep seems to reset his clock into a more normalized equilibrium, as he once again becomes the fun-loving, relatively well-behaved, excitable, but stable child we know. This period of stability usually lasts for periods of about 1-3 weeks at a time. Then, we repeat the cycle again.
The most notable times of mood cycles for Dalton, generally occur in January-February, and again April-May. Usually, we see a resurfacing during the transition of summer to fall, with the onset of school, July-September.
I am very happy to say that with appropriate medication and maturity, Dalton has improved greatly. Where he used to be up and down, from raging and psychotic, to deeply agitated and depressed fifty times a day, now his symptoms are manageable. Now that we are familiar with what workd, and have good medication in place, we are able to adjust medications accordingly, up or down, to assist in minimizing difficulty. Additionally, we know that when we see these patterns emerging, to keep responses to his behavior low-key but firm with the hypomania, and allow the additional rest to recover.
With Schizophrenia, I am not as familiar of the cyclicar patterns. I've been told there are cycles common to the ebb and flow of symptoms. I have certainly seen this is the pattern of increased agitation on Mondays, following a weekend leading back into the school week. The cyclicar pattern of school and transition from less to more structure is often overwhelming for David. I have learned to dread and be extremely cautious of afterschool behavior.
Sleep, on the other hand, has not seemed to be a common issue for David. teens typically seem to go thru periods of need for increased sleep, due to growing. However, I do not see a clear pattern of sleep which will forcast moods to come.
Unfortunately, many of the medications we have to use for both these disorders can cause sedation as a common side effect. The antipsychotic medications and benzodiazapines, both fallinto the category of major tranquilizers. For we "Normal" folk, these medications would like put us out! As I like to say, they would put me in a "Coma". Since people who suffer from Bipolar and Schizophrenia, have brains which are in a constant state of unheaval, these medications act to calm the raging fires of their minds to a more normalized and functional level. Rarely does the correct medication cause severe sedation. If sedation with a medication is a big problem, then a differnt medication is likely warranted.
Choosing which medication to use is an educated "craps shoot". Although there are "Families" of medication, like atypical antipsychotics, first generation antipsychotics, benzodiazapines, anticonvulsants, antimanic agents, antihypertensives, beta-blockers, stimulants, and antidepressants, choosing which of these "Families" to use may be relatively simple, but each medication within the category has a slightly differnt mode of action. finding the correct individual medication, or combination of medications, is usually trial and error.
Weighing the pros and cons of a given medication is a constant thought in the back of the mind, when treating a mental illness. Especially, as a parent, we do not what to overmedicate our children, but we want to help them to be children and enjoy life. We want them to have the opportunity to live, love, grow, and simply be. We do not want to see them turned into zombies byt the wrong medications, or too high a dose, but we cannot bear to see them fighting their minds, so out of control that hey are a danger to themselves or others. We cannot bear to see them in pain.
I do not like the sedating factor many of these medications can cause, but sometimes, we have to put up with a bit of sedation as the price for a higher level of benefit. We are still in this trial and error period with David. We have been here now, with him, for over 5 years. The time frame has been this long, partly in our struggle to find the correct diagnosis, and now to find a mediction which minimizes his symptoms while having few side effects.
Currently he is on Risperdal and Clonopin, an atypical sntipsychotic (the fifthe we've tried) and a benzodiazapine (anti-anxiety). Sicne we increased his dose of both last week, we did not initially see much increased sedation. However, now I am wondering. He fell asleep last evening about 5pm, and did not surface until this morning. Is this the medication, or was this a fluke? I am not used to seeing a delay of 3-4 days between an increase and the onset of sedation... but time will tell.
�To all the mentally ill children in the world, and their parents.�
It is good: For us to learn patience. It helps in all areas of our life.
It is good: That our children are facing these issues now, rather
than as adults, because they can get the help they need.
It is good: That these things happen now, while we can take control
of decisions, for health care, discipline, and education,
that they might be unwilling, or unable to do as adults.
It is good: That our children learn coping skills which
will help them, throughout their lives.
It is good: That our children, some of whom have been hurt badly,
can experience what it is to be loved and cared for.
It is good: That they can learn to trust.
It is good: That, even if we never see the full extent of our parenting
benefits while they are young, every thing we do, say,
and give to them is taken in and stored.
It is good: That they will, someday, be able to share some of our
teaching and love with another person, even if not us.
It is good: That they can be loving and fun some of the time.
It is good: For us to learn forgiveness and unconditional acceptance
toward our children, as Jesus loved us.
It is good: That they experience compassion toward their pain,
and learn to express the same.
All children are a blessing.
All children are a gift.
The most beautiful flowers have thorns.
Things given or received easily,
without effort, are worth nothing.
It is good: That experiencing and sharing our children's pain allows us to love
and appreciate them more than most parents could ever understand.
It is always good
I've been thinking....
I often hear people asking:
How can God let this happen to me?
To my family?
To my child?
What did I do?
Why would God let or make hurtful things occur?
Isn't he supposed to be loving and compassionate?
How can I believe in his love and salvation,
if he will not help and heal my hurting?
I hear and have asked myself the perpetual question:
Why?
Then I remember:
In the beginning, God created mankind.
He made us to be loved by him,
and cared for by him,
and to worship him.
He gave us the freedom to choose how to live,
what to do with our lives,
and he allowed us the option of saying,
Yes
or
No.
In our innate imperfection,
we,
mankind,
chose to disobey.
We allowed evil,
sin,
and pain
into our lives.
God does not make evil, difficult, and painful situations happen to us.
This is simply part of what mankind chose so long ago.
Part of who we are as a whole.
Choices we make determine
who we are,
where we go,
what we do,
why we love,
why we hate,
and how we deal with pain.
Anyone can be wonderful during times of peace.
Everyone will be sociable during times of success.
It is very simple to be kind during times of ease.
Yet, it is very difficult to love in times of strife.
We wonder why illness, injury,
prejudice, and hate happen in our lives.
We are to blame.
We chose to allow evil in.
Once the door was opened,
it came in to stay.
However, we still have the freedom
to choose.
God is always here with us,
whenever we choose to turn to him.
He will forgive anyone, anything.
He will lend his strength,
his support,
and his love
at anytime.
He does not give pain or hurt,
but can deliver us
from the abyss we often find ourselves
sucked into.
We only have to believe.
We only need to have enough faith
to ask.
We can choose to love
when confronted with pain.
We can choose to live
in adversity.
We can choose to give
peace to chaotic minds.
We can choose to accept
reality.
Compassion is a choice.
Serenity is learned.
Patience is a skill of mind.
Love cannot be earned.
To swim within the fires of hurt.
To live as Jesus' own.
The power give a smile to hate,
Cannot be done alone.
God does not destroy our lives.
Our fate's not set in black.
Contentment's there for everyone,
If only we would ask.
So when we find fear at our doors
and terror enters in.
Remember you are not alone
and God did not make sin.
His strength can clear our darkest thoughts,
to let the brightness through.
With his support, without our blame,
Our lives can be made new.
Today was the second full day of the doubled Risperdal for David. We have not changed the Clonopin, as of yet. This morning he was a bit rough waking up, but we left him a list of expectations when we were gone at Dalton's baseball game. Gene had gotten up this am and mowed our lawn, since David had refused Wed, and Again Fri.
David's list:
weed the play area in the yard, then mow the neighbor's lawn for $$. take a shower, and be ready to go when we were back about 1pm. He did it!!! Not a great job on the weeding, but he made an effort and the rest was done.
We took him to his comic book shop as he requested, then to Earth Day downtown, walked the mall, had early dinner, and home. David invited Nate over and they played Yu-Gi-Oh with Dalton for 2 hours. :0)
No big blowouts today. Edgy, but able to draw back with redirection. Maybe the med increase will work.
Tomorrow is a test, I have not challenged the "H" word (homework) yet...
Mental illness is probably more devastating than cancer.
Unlike illnesses where someone gets deathly ill,
then gets better,
or they die.
When they are sick, others can see.
They can sympathize and understand.
Mental illness is unseen.
On the surface all is normal.
On the face, there's nothing wrong.
Yet internally, the ill person is so very sick.
All the world sees
is a person acting weird,
or strange,
or mean,
or criminal,
or dangerous.
They cannot sympathize, or empathize
with what they do not understand.
Understanding cannot come until they walk in our shoes.
Mental illness is worse than any other I can think of,
because
though the person is present physically,
their spirit and soul are absent.
...and no one sees.
__________________________________________________________________
We saw Dr Robertson this afternoon. He had not been informed of our emer call to the cmhc on Sunday, nor about the results of his therapy with Jen on Tuesday! I filled him in, and David demostrated just how irritible he is when he objected to my version of events... I told the pdoc where we were on clonopin currently, and that upon review, that his symptoms got dramatically worse within a week of stopping the Geodon. I questioned the need for an Increase of risperdal or return of Geodon.
The final outcome of this visit: We incerased David's Risperdal from 1.5mg BID to 3mg BID (Double). He also gave me a script to increase the Clonopin from the .5 to 1mg TID, to up to 2mg TID (again Double).
We discussed that if this does not work well, we can go the Clozaril route. If we do that, he said he would feel better referring David to an "Adult" pdoc at the center who have experience with Clozaril. he explained he has not rx'd this med and simply does not have experience with it. he only has one child in his caseload who is on it, and he "Inherited" this patient.
So................we have a plan. I hope the Med increase works. I am so tired of this dance... but a plan is always helpful.
Re: last evening....
More of the same, and he absolutely refused to do any homework. When I stopped questioning him about it, he played cards with Dalton for the rest of the evening. Peace is more important than school right now!
God Bless, and thank you for any who read this.
BettyJo David and Dalton's mom
There is always a light, no matter how dim, if only we seek to find it.
Buzzards, Bats, Bumblebees and People
Buzzards
If you put a buzzard in a pen that is 6 feet by 8 feet and is entirely
open at the top, the bird, in spite of its ability to fly, will be an
absolute prisoner. The reason is that a buzzard always begins a flight
from the ground with a run of 10 to 12 feet. Without space to run, as
is
its habit, it will not even attempt to fly, but will remain a prisoner
for life in a small jail with no top.
- - - - - - - - - - - - - - -
Bats
The ordinary bat that flies around at night, a remarkably nimble
creature
in the air, cannot take off from a level place. If it is placed on the
floor or flat ground, all it can do is shuffle about helplessly and, no
doubt, painfully, until it reaches some slight elevation from which it
can throw itself into the air. Then, at once, it !! takes off like a
flash.
- - - - - - - - - - - - - - -
Bumblebees
A bumblebee, if dropped into an open tumbler, will be there until it
dies, unless it is taken out. It never sees the means of escape at the
top, but persists in trying to find some way out through the sides near
the bottom. It will seek a way where none exists, until it completely
destroys itself.
- - - - - - - - - - - - - - -
People
In many ways, there are lots of people like the buzzard, the bat, and
the
bumblebee. They are struggling about with all their problems and
frustrations, not ever realizing that the answer is right there "Above"
them.
~~ Author Unknown ~~
I cry out into darkness
I scream into the night
I race into chaotic fires
and strive with all my might
To rescue all the parts of him
Writhing in such pain
Confused, distracted, terrified
He desperately lays blame
Upon the shoulders of the strong
For he cannot be weak
Divided soul cannot accept
A hand stretched out in peace
I cannot reach that inner place
Where I know he�s jailed
He buries himself deeper
As I fear I�ve failed
How can I live?
How can I love?
How can I just go on?
When my poor child who�s petrified
Sits burning in the dawn?
I see him here
But he�s not there
His shell a raging space
Of terror, pain, and suicide
Written on his face
Yet tiny moments part the black
To let me see within
His gentle self there all alone
Amidst that hellish din
I wail up to the heavens
Yet, know I can�t know why
But please dear Lord
Please help me here
I don�t want him to die
Renewal
Silently, overhead
As breezes blow through dreams
Where moonlight filters into hearts
Filled with unspent schemes
The wandering soul may pause
And overshoot the thought
He must have missed his spoken goal
At some unlikely spot
When all his fears were absent
And only fantasy
Remained within his furthest view
Struggling to see
The glimmer of the night-shine
Where hidden dreams come true
And memories are forgotten
He may not know quite who
Has whispered at the darkness
Into his quiet spaces
Of glorious dawn to rise and glow
Illumining all places
That hurting spirits linger
Clamoring to find
Huddled in the blackness
Of a stricken mind
Whose face, a peaceful gem
Reviving fractured hearts
Drawing each back into life
Creates a blessed spark
Looking back at my entries..... I see on 04/08/04 that David's last dose of Geodon was 04/06/04. He began having more serious issues with stress and paranoia again about a week later?????
Tomorrow is an appt with Dr Robertson, I need to ask about a combination of these two medications being of possible benefit. I know the Geodon was helping with some of the negative symptoms, maybe it would work on concert with tht Risperdal to counteract some of the stress and inability to manage???
Yesterday, was another rougher evening. David lost his math assignment, he said he put it in his book and his book in his bag, but it was not there. he was upset, it was not his fault, but, No, no one else had touched his stuff! I told him he need to be certain to get the assignment again today before he came home. he got very upset, and in a not so great moment, I asked him sarcastically, "So what, a tiny demon jumped into your bag and took it?"
This lead to several hours of ranting that I was being sarcastic and sterotypical and prejudiced against his schizophrenia. That I had said demons jumped out of his head and into his bag to steal the paper...... This lead to you always jump my case everytime I try to do homework.... and refusing to start hishistory because I would jump his case...
Finally, David did manage to settle down to do most of his history assignment in order to be able to stay after school today, but I forgot that he had therapy today.
Well all things considered, today went pretty well. Since I had forgotton to remind David that he had therapy at 3pm this afternoon. This means i had to pick up early from school, when he was planning to stay after with friends. He had earned this priveledge after completing 45 of 60 problems on his history assignment after having a very paranoid rough afternoon, last night.
In addition, he forgot lunch money for the 2nd day in a row, and I did not know his lunch time had changed to an earlier time on monday! I met him at school with McDonalds, which helped.
The therapy appt went well, I was in with him for the first 1/2 hour. We tried to ddress how to cope and walk away to cool down when having an incident. ie.. going to his room, or somewhere instead of continuing threats..... Didn't get far :0(
After I left, Jen(tdoc) told me she tried to help lead him to some decision, and she got more of the "I can't, x will happen, they will follow me, its impossible....." shooting down every option she tried to suggest, yet unable to come up with anything on his own...
We did get agreement that he would take the clonopin when he gets home, but he complained that I confused him when I asked him to take it, as I was not clear where it was! It is almost always in his daily pill container in front of the microwave on the counter!
We see the pdoc on Thursday, I will ask about increasing the Risperdal, jen suggested maybe asking for Seroquel PRN for the sedation. He has taken it before, it was actually the first antipsychotic med we tried. It did not work well to contain things, but did tire him some.
I asked Jen about the paranoia, as this is the one thing that NEVER goes away. she got an earful of his belief that his dad was going to hurt him, wanted to harm him, he could not go to his room because Dad would follow him..... She told me that some people are very treatment resistant on this, and he may always be. She expressed some concern over did we feel safe. I told her for now, we are ok, but agreed that we were very close to insisting on hosp Sunday. That I flatly told David that he had a choice to make, either calm and stop the threats to us and himself, or hosp. I asked him if he would repeat his threats to an officer, then called the emer line to the CMH offices. At least, for that time, it was enough to calm him.
and life goes on........ He has a &^%=load of homework, but tells me since he could not stay after school to Hang today, he should be able to tomorrow, whether he does work or not! I'm not sure this is a battle I want to fight.
God Bless,
there is always a light, no matter how dim, if only we seek to find it.
David did manage a bit better afternoon. I think the clonopin kicked in a bit. he even had me cut his hair! Very short, a number 8 clipper on top.:0) He spent a couple hours at a friend's house, but got almost no homework done. Me may be failing another class. He was to turn in tomorrow am, for the grade period..... We'll see.
Gene and I took Dalton to the park and he played in the creek and with other kids for a while. He had a good time. It was peaceful.
I'm crossing fingers that tomorrow will be better.
God bless, BettyJo
Hallmark of this ugly illness, is the paranoia.
I hate it,
I loathe it,
I want to run from it,
I wish it would disappear, but
I have to face it head on.
This past week has been up and down. Monday - Wednesday, the stress of the impending end of the grade period resulted in several outbursts from David. These invariably end up in paranoid ranting, that we don't love or care about him. If we did, we would help, but the help has to be on his terms, with no requirement of him. I was a bit to keep most of these from going too far, and he was able to calm down, but the edge of surety that we, school, his teachers, his brother, and the world are against him is always there.
Wednesday was especially difficult. He was very paranoid, and screamed at me for a long time. He escalated into the you don't love me, you never do anything for me, you only care about Dalton, you don't make him do anything. He was screaming that if Dalton got in his face again, he would go to Dalton's room and shred everything Dalton owned. There was no rationality or responsibility there with him. I just had to ignore him. Gene got home and mowed the lawn. David has refused as, he was convinced it did not need mowed, and he refused. However, after a period of time, Gene was able to convince David to take over, then he went ahead and mowed the neighbor's lawn. He does this for money. The exercise seemed to reset his emotive control.
Although it sounds bad, and strange, David's injury of his ankle at school on Thursday, in some ways, acted as a reset switch to his functional level. I picked him up from school, we went to the doctor who diagnosed a bad sprain. We bought a brace and rented crutches, ate lunch, and I dropped him back at school. Thursday evening was better than he had had in several days.
Friday, David had a band contest immediately following school. We took Dalton swimming. [Dalton went poop in the toilet Wed morning, had poopy pants Thursday, pooped in toilet Fri morning, then accid in his pants Fri afternoon, but went at the pool before we swam, in the toilet. Swimming seems to be very good for him, and a motivator for toiletting.] Friday evening, David was edgy and tired, but we managed to have a good evening without huge issues. He even decided to sleep in Dalton's room on the floor to keep Dalton company! Dalton is a bit anxious about the sound of the wind on the house siding.
Saturday Dalton had a parade, and his first Challenger Little league baseball game. David decided to go with us, and he did pretty well. We parked the truck for him to sit in and watch since his ankle was hurt. Dalton had a great time and did well. David enjoyed watching the game, he sat with me on one side of the field for a while, then with Gene.
Unfortunately, at the end of the game, both kids were tired. Dalton made a "Fake" swing with his bat toward David. No intent, and no way near hitting him. David got paranoid and yelled loudly "If you every hit me with the bat, I will..." he did not finish the threat.
We managed to leave and get the boys calmed. Had lunch out. David did a tiny amount of history homework, then i took him to a card tournament from 3pm-8pm. Gene and I took Dalton to the Canal walk, and we had a long walk, and dinner, and peace downtown for the evening. David was very edgy when we picked him up. He went to bed about 10pm.
Today, Sun, Gene and I decided to skip church. maybe not the best choice in retrospect, but I wanted to take it easy due to my back and shoulder being out.
David slept in until about 8:30. Dalton was up bright and early about 6:30am! We let Speedy (bunny) out on the porch for a while, blocked the dogs out. Dalton was having a good morning. he began to wander the neighborhood to play with other kids. When David woke, he appeared to be i a decent mood, but edgy.
About 9:30, Gene and I decided to take a short nap. The boys began to get in each other's faces, i separated them. Told David to go to basement. Dalton was to leave his brother alone, and play computer or outside. Unfortunately, we had only gotten to sleep about 45min, before i was woken by Dalton screaming and crying. Evidently, David had come upstairs after Dalton went out to play. Dalton returned inside, and "Pretended" to swing his bat at Dave. **He did not hit him**. However, this perceived threat was enough to send David's paranoia of being hurt through the ceiling. David had taken his crutch, in response, and swung it at Dalton. David was in the recliner and Dalton was on the couch. the crutch hit Dalton in the crotch, hence the crying.
I was trying to get the details, when Geneee also came down, woken. David was screaming at me, calling everyone in the house "F***ers". Gene got into the conversation, and David was screaming threats at him. Gene made a comment, to the effect of, what do you want me to do, kick your other leg?, not a good choice of words...... This lead to completely paranoid outburst.
I managed to get David to take two clonopin and ibuprophen, for the ankle. he was "Gone". he refused to go to his room to calm, even when I told him he had permission to lock the door. He said we could unlock it, he did not trust us, and he KNEW that we would come up to hurt him. he said if he went to his room, he would get a Knife and kill to protect himself. Then escalated to what did I want him to do, throw himself out the window. He probably would, then I would not happy. I could not get him calm, he would not move to find a quiet space to calm. he was sitting/laying on the floor in the dining area.
I told him he had to decide how he was going to calm down, and stop the threats of harm to us or himself, of I had no choice but to consider hosp. I finally did call emer pdoc re: threats and suicidal ideation. David lay on the floor complete shut down for about 5 - 10 min, then disappeared. I found him in the basement, barricading himself into the void under the stairs. he placed cots in front of himself. i tossed him a blanket as the concrete was cold.
A therapist called back, and then David did agree to talk with her. I think the Clonopin had kicked in a bit. he played computer games for a while after that, then came upstairs for icecream and brownies. He is still edgy, and the paranoia is underlying his thinking process all the time. I did manage to get him to take a shower. I hope he does better this evening.
I hate the paranoia. there is no possible way to convince a paranoid, irrational person, that you are not a threat. That we will not hurt him, or that we love him. I find myself wondering just what kind of life he will have with this outlook on life? He is still this paranoid, on medication. We have tried so many interventions, and still, even when doing better than before, he still has this problem.
Calm in the face of storm. Peace into desolation. Still nothing can give him comfort.......
I pray tomorrow is better.
Grieving the loss of Normality is a definite truth for anyone with a mentally ill family member, especially a child. We've been through this over and over in the past seven years. BTDT so many times with Dalton, and I can truly say, we are finally to the point of being able to look to the future with hope and joy. Yes, we still have "If only..." "What if..." moments, but these are only occasional, not every moment.
David's dx however, is new. Although we have known for several years that he had "Issues", there was no acknowledgement of permanency, of a life-long disability. Even though his dx has been a relief and a release in many ways, we finally have an answer, it does bring that permanency thing to the forefront. I think I am more there than Gene, but Gene has come a long way in the past few months.
We have learned that we have to celebrate the smallest victories, like the mountains they truly are. Three steps forward, two or more steps back..... the cycle repeats over and over. The one truth that we have found in the past seven years is that, progress is made. It is simply done at a slower pace.
Normality is flexible. Every person's version of what is "Normal" depends on their life.
I used to say: "I remember when life was normal....." I learned to say: "I remember when life was peaceful....." now I say: "I remember when live was boring." LOL
Just think how boring all those normal people's lives are. they cannot imagine the intense pleasure an joy that we experience over such simple things as an hour of smiles and peace.
Hello,
I admit it. I am guilty. I am a bbbaaaaaaaaaaaadd mommy! LOL
Got a call this morning from David's school nurse. His leg had fallen asleep in second period and when he stood up, he put all his weight on the side of his foot...... OOPS! So he was in the nurse's office, and would I please come pick him up? We should have a doctor look at it.
Me, being a bbaaaaaaaaaaadd mommy, asked if he was really hurt, or if maybe he just needed to sit a bit? anyway, picked him up, took him to the doctor. By this time, his ankle was swollen. He has a bad sprain. Bought a brace, and rented crutches, fed him Taco Bell, and took him back to school. LOL :0)
I always feel bad for feeling good when I get to have a "Normal" parenting experience. But he is fine, and was in a good mood! Hopefully this will translate to a good afternoon........ [fingers crossed tightly here]
Have a good day,
Well, this has been a pretty hellish week. Daivd has been doing well with his new medications, however, this week, the stress of school really hit the fan again. Friday is the end of this 6 week grading period, so all his teachers are putting pressure on their classes about grades..... finishing work...... etc. Every day, so far, David has come home in a "Mood" which goes on for several hours. This "Mood" escalates, into screaming, ranting, paranoia, accompanied by "Lovely" "Affectionate" names for mom, and a couple for dad. Then follow this by an apology to his brother:
"Dalton, I'm sorry for the cuss words and yelling. I don't owe mom an apology, though, because it is her fault for refusing to help me."
Gotta love the mind games they try to pull. I have a pretty sick sense of humor. My response to him was a sweet smile, an "I love you.", and an "I'm so sorry you see it that way."
BTW-- after mom doing 95% of the organizational function, the actual handwriting and typing, locating sources, choosing quotes, connecting disparate pieces of information, making judgements and interpretations of said material, and walking David throuh the intellectual process of speaking half of each sentence, then transcribing his jumbled thoughts into a coherant paper,
HE IS TURNING IN HIS ENGLISH RESEARCH PAPER TODAY!
He even has a B- this grade period so far! I keep thinking I should feel guilty for "Helping" him so much, but I don't! His teacher knows I've been helping, and though he may not be able to repeat the process alone, I know he knows the content and topic of his paper well.
Yesterday's story? he was in full rant from 3pm to 8pm. However, after taking his afternoon Clonopin, then another with his dinner meds, I managed to get him into the computer room with me, reviewed two additional sources for his paper, chose quotes, walked him through how to connect them to his paper, and finished the assignment based on teacher's edit of his rough draft. [Twisted smile here: :0)]
Second quote of the day:
Conditional help is like Conditional love. They mean nothing! I should not have to do anything to be helped!
Hint: I had asked him to sit up in his chair, not recline with arms barrricaded
across his chest, and that he be open minded to learning, not
screaming at me. LOL
[Can we see why a person with executive functioning problems finds school so difficult?]
He is cutting his losses in math, and will take an F forthe 6 weeks period.
Chemistry is giving him an incomplete. We meet with his teacher next week to make sure he has all the information he needs to complete this grade period's assignments at his own pace.
I think he is caught up in his other classes. Fingers crossed, and praying for this year to end quickly. He had a wonderful week, last week. Primarily because I did not require him to do any homework, or rarely even mentioned school since his grandmother and cousins were up for the week. Monday this week.... BAM! I hope that things will be better since the new grade period begins Monday.
Strategy for today? he will get two Clonopin after school, and the word school will not exit my mouth for at least 45 min after said medication!
Parenting rule of the day: Be flexibile. Be forgiving. Be vigilent. Be loving. Grab the moment. Teach the child.
God Bless,
Hope you are having a good day.
BettyJo "My kids mom"
There is always a light, no matter how dim, if only we seek to find it.
Hi,
Well yesterday was a whopper. Probably the worst since David began the Risperdal and Clonopin combo. He had a great week and weekend last week. It was his 17th birthday, he had a party Sat with 6 friends, and his grandmother and two cousins were up to visit last week on their springbreak.
Beginning sunday afternoon, David began having difficulty. I made him sit with me while we (mostly I) worked on completing his english research paper. He got home yesterday, upset and overloaded re: school. Informed me his english teacher said he should find another source for more information on his paper, and he "F'g" wasn't going to do that! This was followed by informing me that even if he did all his missing work for math and got 100%, he would still fail this 6 weeks, therefore, he ws not going to waste his time. He says his Chemistry teacher will not give him information the way he wants it re: past due work, and he did not stay for help after school because she had too many kids in the room and he would not get helped! This was quickly escalating into a paranoid rant.
David refused to take his afternoon Clonopin, as there is nothing wrong with him, he does not need it. I tried to direct him to his meds several times over 3 hours. finally Gene got home, and he tried to reason (I gave up on that), we did manage to get David to take his pill. he settled and had a better evening, but refused to think about homework, except, he did take his paper ( I typed the day before) and did a couple edits.
I HATE THIS ILLNESS. We did get David's agreement that he would take his meds for us, they are not PRN, and we understand his brain is telling him he's fine, but his meds are needed...... I hope this is remembered next time.
God Bless,
BettyJo: Gene's wife, the best daddy in the world.
David's and Dalton's mom.
There is always a light, even in your darkest hour, if you seek it.
Happy Easter to everyone. Today is a day of celebration! Jesus is risen! We are saved! Life is good!
I hope everyone is having a wonderful day. This has been, probably, the best holiday we have had in many years. Dalton is doing wonderfully, his meds are good, he stayed the entire children's service with his volunteer aide. They did not have to leave at any point! David had a wonderful week, he had 6 friends over most of yesterday for a birthday party. He has friends this year! He is happy, he is more flexible, and he is fun to be around. I think we are finally getting a medication which is working!!!!! Thank you God.
All in all this has been a great season. My mother, and two of my nephews were up all week. It was a good visit, we all had fun, the boys all enjoyed each other's company, and David had no extreme paranoid situations. On those occasions he did feel stressed, and you could hear and see his distress, he was able to step back and calm himself, and/or, take a Clonopin.
I have learned that mental illnesses are not a desired condition, but they are not the end of our world either. These illness can be a blessing in that:
We learn to be more sensitive to each other
We learn to cope in stressful situations
We learn to keep going after failure
We learn to lean on God.
God bless you all this Easter season. You are not alone.
There is always a light, no matter how dim, if only we seek to find it.
BettyJo
David's endocrinologist called yesterday. His MRI is normal,no thalmic lesions. His ACTH stim test was normal, his body makes Cortisol. She reviewed his old dr's records, says his Pit. stim test was definitely abnormal, but all other tests related to hormones produced as a result of communication with pit hormones are normal????? Will continue Growth hormone for now, but recheck the stim test in summer. His TSH was not normal, so continue. His testosterone appears normal as well. Overall, good results. maybe we will be able to stop the growth hormone soon too. She said sometimes, the test shows abnormal when it is not truly so.
At this point, We stopped his testosterone shots, the cortisol supplement, and are continuing Synthroid and Saizen.
We do what we have to do, but financially this wouldbe good. His growth hormone costs us $250/mo AFTER insurance pays!
Things are going pretty well. David took his last dose of Geodon, day before last. Since we began titrating the dose down, he has shown increased tiredness in the morning, and complained, yesterday, of feeling hyperactive, unable to sit, and being restless in the afternoons. I wonder if this is the result of the Geodon being taken away? I know that the Geodon was acting positively on his negative symptoms of social withdrawal, flattened affect, and apathy, even though it did not contain his agitation, severe anxiety and paranoia, his disorganized thinking, and he was still having great difficulty with executive functioning.
I need to talk to the pdoc about whether or not we may need to increase the Risperdal. Although 3mg was sufficient while David remained on the Geodon, he may need a higher dose to cover the benefits the Geodon was providing.
Other than this, David is doing remarkably well. He is not caught up on homework, by a long shot. I have concerns as to whether he will be able to get there. However, he is working on assignments, and is not completely overwhelmed at the thought. He is continuing to make progress in his ability to be flexible when things do not exactly match his pre assumed path, and is initiating more social contact.
I think this may end up being a good Spring season. :0)
Spring is, typically, one of the hardest times of year for our family. This is the time of year when Dalton's moods have a definite shift to mania and increased agitation. This year has been doubly so, with David's issues in the mix. As David has been highly explosive, Dalton is a mirror of the stress for a good period after David is done.
We did some medication adjustments with Dalton already. In February, Dalton began having more irritability, giddy, mania. He was having instances of aggression at home and school. A couple incidents at school landed him in the behavior room, and dropped his level down to Bronze for weeks. Then He had an incident on the bus where they had to remove him, took over ten min to get him off the bus, and then called me to pick him up. At this time, I increased his Zyprexa from 5mg/day to 10mg, it seemed to help a bit.
When we began seeing the new pdoc for David, I decided to switch Dalton as well. It is always helpful to have the same doc for both boys, then the pdoc knows the family dynamic and how it affects both. Dr. Robertson suggested increasing Dalton's Seroquel to possibly beable to eliminate the Zyprexa. Dalton has been on Zyprexa since 05/98, and it has resulted in a 15-20lb weight gain each year. I asked about replacing with Abilify.
We increased Dalton's Seroquel from 800mg/day to 1300mg/day. I did use 5-7.5mg abilify for about 2 and a half weeks when I completely eliminated the Zyprexa, but have stopped that since I was seeing him "Zone out" in the morning. The increased Seroquel is working, he was on SILVER level for a week, and just made GOLD level at school for the first time in months! He had two days in a row, this week, of PERFECT SCORE on his daily behavior report!!!!! This is a never before achievement. Dalton has also been ready and waiting for his bus to arrive, every day this week. With his teeth brushed, his hair comed, his homework done, his medication taken, and a smile on his face!
I keep thinking "Pinch me" this spring is likely the shortest transition so far. usually it has taken from Feb-May, or even June to get him stabilized from the seasonal mood shift. Ssssssssshhhhhhhhhhhhhhhhhhhhhhhhh......... Don't want to spoil the moment.
God Bless, BettyJo
There is always a light, no matter how dim, if only we seek to find it.
Where does the sun go?
Behind the�
Stars and the moonlight?
Marshmallow clouds flying high?
Trees embracing the river?
Down where the mermaids cry?
Do you know?
Does it go�
Over the hill to China?
Under the ocean depths?
Out to play with the dolphins?
Where peanut butter and jellyfish met?
Do you know?
Why do the stars shine?
Are they�
Souls of elves gone to heaven?
Diamonds thrown into the sky?
Candles reflecting tears fallen?
Lyrics of songs long gone by?
Do you know?
Are they�
Fires lighting paths for lost sailors?
Blazes of loves� search to meet?
Lanterns held by the angels?
Guiding our souls to be free?
Do you know?
Of what is the moon made?
Is it�
Ice cream fallen in heaven?
Mountains of holey Swiss cheese?
The fingernail of a giant?
Reaching out in the night to my dreams?
Do you know?
Maybe�
An eye in the sky watching over?
Frozen icicle dreams?
Peppermint candy from Christmas?
Does it call to the whales in the sea?
Do you know?
Why do the clouds cry?
Are they�
Sad when they watch forest fires?
Happy to see playing children?
Joyous when hearing birds singing?
Fleeing in fear of the sun?
Do you know?
Do they�
See every time I act badly?
Know that they�re watering trees?
Plan to adorn blooming flowers?
Intend to bless you and me?
Do you know?
What makes the wind blow?
Is it�
Breath from volcanoes sneezing?
Hurricanes dancing at dawn?
Whispers of hope for the future?
Secretly cleansing our wrongs?
Do you know?
Does it�
Long for the freedom of insects?
Fly on the wings of a dove?
Yearn to run in the meadow?
Seek to magnify love?
Do you know?
When will I find answers?
To�
All of my unanswered queries?
All of my dreams in the dark?
All of my fears held in silence?
All of my cries flung so far?
Do you know?
For�
The pain of the innocent children?
Their longing only for love?
The making of smiles on all faces?
Seeing blessings in each tiny grub?
Do you know?
Will I ever?
Learn to�
Sing in the night to an angel?
Cry at the glory of morn?
Praise the beauty of heaven?
Bless the day I was born?
Do you know?
Could I �
Fly over hopes of the dreaming?
Glow in the eyes of a child?
Be at the heart of a family?
Believe in the wealth of a smile?
Who can know?
Yesterday is gone, and today is a new day. A clean slate. Dare I believe that this medication combination is the correct mix?..... Afraid to put it in permanent thought.
My mother and one of my sis's two boys are up to visit for a week. They are on spring break. David and Dalton returned to school this morning. Saturday continued well after my previous note. David finished plastering our neighborhood with fliers to mow lawns. He mowed ours and the one neighbor's lawn, quickly! without a temper fit! and remained cheerful the rest of the day!!! he even agreed to "Babysit" Dalton for a couple hours while Gene and I went and did some errands and out to lunch!!! David remained in a good mood when asked to feed the dogs. Heeven started work on his chemistry assignment for a short time. It's been a very long time since this good of a day.
Sunday, David did great at church, I gave the Clonopin am and afternoon. and he did well most of the day. With his cousins visiting, they all got along very well. Dalton was wonderful and tolerant with Chris(cousin) and David was occupied with Chad(cousin). they did wonderful in church, David stayed awake during service, and then played a lot of computer games. David was cheerful and affectionate with me, he also was tolerant of some teasing.
There were only two incidents all day. Both happened in the evening when tired, and his Clonopin was late. Dad asked him to help find a remote control that Dalton had lost. David went into his paranoid stuff, "You are blaming me, I am not going to be blamed for doing anything. I did not touch it." he stomped to his room. I talked to him in a moment and he was able to be reassured, take his pill and come back down.
The second incident was later with Chad. They were playing a game on the computer, Chad evidently was not turning over the control to David and was playing David's turn "FOR" him. David was righteously upset, yelled and stomped off to pout in the living room. I spoke with him, and he was able to calm and rejoin the family.
The fact that he handled both these situations by leaving to a quiet spot, is pretty close to a miracle! the fact that he was able to calm and rejoin the family within less than 10-15 minutes, is just as miraculous! I hesitate to mention the word "Stability", but I hope and pray.
Dalton also is doing wonderfully, he is off Zyprexa, he has been on this med since 05/98. We have raised his Seroquel to 1300mg/day. Previously he has been on both medications since 12/98, and was taking 800mg for the past year. I hope this will assist in him losing some weight. I know the Zyprexa has impacted this. He is 10 and 125lbs. There was only one incident with Dalton yesterday as well. Late, he was tired, should have been in bed. i am not certain exactly what happened, but Dalton ended up on the floor, caught in a collapsed folding chair. He was hurt and upset, and called for "Mom". He says Chris pulled him down???? I think was an accident. Chris was very upset and scared. Anyway, after I managed to calm him, he was not combative!!!!! he even was able to hug chris and assure him that he was ok, this was an accident!
I have not talked much about Dalton's history, but this is unusual for him to react to being hurt and scared, this way. Even when "Stable" he reacts to pain violently. Almost never, is he able to calm and be concilatory and empathetic at this time. or immediately following.
This morning, he was able to get up, dressed, was not poopy, let me brush his teeth, took his medicine, and was even able to play a bit with Chris before his bus. He was waiting outside when the bus got here! This is a bug achievement for him. A good start to a Monday. I'm in shock here. :0)
All I can say, is thank you Lord for this weekend. peace is a valuable commodity in this house.
There is always a light, no matter how dim, if only we seek to find it.
God Bless
Today is another day. We always get to begin with a fresh slate.
Yesterday, we had a pdoc appt, the day before, we saw David's tdoc. On Thursday, his therapist saw David paranoid. This is the first time she has really had a chance to see and head his thinking like this. She spoke with his pdoc who we saw Friday. The pdoc told me an option to try treating residual paranoia, fearfulness and anxiety was either to add an anticonvulsant as an adjunctive mood stabilizer, or try a benzodiazapine. We have previously tried five of the MS meds, no effect, so we decided to go with Clonopin.
Re: Risperdal, he has been on it almost two weeks. It seems to be helping with executive functioning. David is beginning to make decisions and initiate things. Motivation! I haven't seen in forever. It is a slow increase, but from my perspectiveis dramatic. I hope it continues.
The pdoc explained that adding a benzo to AP med can increase the efficacy of the AP without increasing the dose. This is good for many reasons, among which is less risk of side effects (SEs).
Last night, David was calmer. This morning, he was able to wrestle and horseplay with his father and brother for over an hour without getting upset!!!!! I can't remember when this last happened. last evening, he took 65 fliers soliciting work mowing lawns and plastered the neighborhood. He approcahed the next door neighbor and got his first account. Today, he baby sat brother while we ran errands, and now, is outside mowing!!!!!
Pinch me! I'm dreaming. LOL On second thought....... Leave me alone to dream. I hope and pray this lasts. :0)
God bless,
There is always a light, no matter how dim, if only you seek to find it.
Lost?
Where is Hope:
When pain is unrelenting?
When life is overwhelming?
When eyes are bent to flooding?
When hearing shadows speaking?
When skin begins to crawl?
Where is Love:
When anger fills each sentence?
When hearts have iron jackets?
When feet seek open windows?
When fingers yearn for scratches?
When soul begins to cry?
Where is Safety:
When fires burn untended?
When fences are unmended?
When terror�s undiluted?
When thoughts remain polluted?
When happiness has died?
Where is Singing:
When dissonance is shouting?
When chalkboards tend toward screeching?
When voices are unfeeling?
When hateful words are screaming?
When life has taken all?
Where is He:
When nothing seems to matter?
When broken dreams have splattered?
When goals are melted plaster?
When despair is now your master?
When only sad is real?
He is Here.
He is Hope:
To heal your hurting memories.
To soothe your daily chaos.
To point your eyes to peacetime.
To sound a joyful horn.
He is Lord.
He is Love:
To give you calm for raging.
To open heart�s chained doors.
To lead your walk toward heaven.
To clasp his hands in yours.
He is Holy.
He is Safety:
To quench your fiery gnashing.
To tie the lash which binds us.
To banish fear behind you.
To wash away your sin.
He is Father.
He is Song:
To chime with quiet stillness.
To soften stressful keening.
To bring you joy and healing.
To fill your heart with love.
He is Savior.
He is joy.
He is pure.
He is light.
He is peace.
He is God.
Betty Jo Hilger
I think the thing I hate most about this illness is the residual symptoms. Paranoia is horrid. Delusions of persecution, harrassment, and being in danger from loved ones is awful. However, now that those symptoms are better, if not gone, the worst thing about this illness is the decline in cognitive skills and executive functioning.
Over the past 3-4 years I have watched a steady decline in David's grades. He has horrible difficulty thinking clearly, problem solving, thinking abstractly, initiating, planning, decision making, and just living. Math, which used to come easily, he could earn A's and B's without much effort, is now his worst subject. He failed one class this year already, and is fighting just to pass, now, with a D. English is also awful. He cannot handle the decision making and abstraction of research, outlining, deciding how to cover a topic, put thoughts together in a logical manner to write a paper. When looking up something on the internet, he will type in one option for a search, then check the first couple sites. If he cannot find what he is looking for, he seems unable of changing the search criteria. Change and flexibility simply seem beyond his capability to consider! David's grades were 3.459 GPA first semester freshman. Last semester, first semester junior year, was 1.446 GPA.
David gets stuck on a thought. If he cannot figure out an answer, he cannot move on. He would rather take a zero, than complete the assignment incorrectly or partially. He focuses on the overwhelming amount of homework and cannot get anything done for the anxiety and paranoia. even on positive things, David cannot make decisions and plans well. EG... Activities with friends. David can rarely initiate interaction. Sometimes an invitation from a friend, or their asking to come here is enough to get things started. Usually, it takes his father or me asking if he would call a friend to make plans, then ask if he has made transportation arrangements, Ask if he has money for said activity, and often make sure he gets there and is picked up.
With medication, David's negative symptoms of social withdrawl have greatly improved. He has more friends now than he ever has, but executive function and cognitive dulling is not improving much. We are to the point that, should he fail another class this semester, he will likely withdraw from High School and get his GED. I believe he could test and pass it now. The stress and overwhelming stimulation and load of school is his biggest trigger for explosions and paranoia. Although, up till now, he does not usually have overt symptoms at school, he unloads all the stress at home. Simply a mention of the word, homework, is enough to elicit a full blown paranoid explosion which, if we are unable to halt, will escalate into an hours log rant about being hated, harrassed, persecuted, unwanted, a target, a victim.......
David began Risperdal approx. two weeks ago. It is hard to say if it is helping to clear his thought processes. David has read half a book for pleasure during this time. This is a first in over a year or more. Yesterday, he was able to complete a History assignment. He even was able to skip a question he could not answer, and go to the next one, to come back to the unanswered one when all others were done. This was at my instruction when he got frustrated and fixated. This is something he has been unable to do for a long time. Wednesday evening, I finally got him to the "Lightbulb" moment of concluding: "Oh, you mean I should ignore my research paper assignment until all my other homework is caught up?" This is a huge improvement for him. He has been unable to do hardly any homework in over two weeks, for his fixation on being overwhelmed by the english paper.
Is this enough? Is this as far as he can go? Will he ever be able to hold a job requiring critical thinking, and planning? Risperdal is the last of the atypical antipsychotic meds. He has tried all the others. It is so sad to watch your child struggle with being unable to do things which he once could.
David described his thoughts when confused as multiple trains of thought, all different, all at the same time, and being unable to decide which is correct. If we try to help him with the "correct" choice, we are confusing him worse. If we don't try to help, we are "refusing" to help and hate him.
I hate this part of this illness.
Introspection
She sighed.
Looking out into the greying mist
unable to discern, the shape of
angry cliffs piercing the night,
before her eyes,
which wept.
Waves crashing on the rocky shore,
the spray disguised apparent weakness.
Lightning broke the darkness
to reveal, only fog, blanketing the seas,
which churned.
She prayed,
for sailors caught helpless in the storm,
with no control of forces buffeting
impassioned seas. For restless souls,
who, in spite of danger, continue to face
a merciless world
with dreams.
Betty Jo Hilger
Copyright �2004 Betty Jo Hilger
Hello everyone,
I survived, as did the boys, over three hours in the outpatient hospital today. David (sz) also has many hormonal issues he faces. For the past year, he has been under treatment by an endocrinologist back in KS. We jsut changed, finally, to one locally, in IN. for the past year he has been on HGH treatment for pituitary disfunction. The old endocrinologist, says due to head injury from all teh seizures he had prior to age five, his pituitary was likely damaged. He has also been on Thyroid, Cortisol, and Testosterone.
The new doctor wanted an MRI and a ACTH (cortisol) stimuation test to confirm his deficiencies. She said that based on her exam, he most certainly does not need testosterone, and that without the stim test above, he should not be on Cortisol. So we stopped both those. She did the MRI, as she said she has never heard of seizures causing pituitary damage. She is a pediatric pituitary specialist. She did say that with his growth, it is not possible that the pituitary was malfunctioning when he was younger. She did say that the test his prev doc did might indicate a problem which could be caused by a thalmic lesion. Hence the MRI. I got a copy of the MRI to give to his psychiatrist this afternoon as well. I have heard that differences to the brain in schizophrenia can be seen, sometimes, on a MRI.
