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Old 06-25-2004, 08:30 PM
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Mg

MG,
Jareds QTc has gone up to 488. 500 is not far away. He is doing so well on the clozaril. I want to just lay my head on the table and cry. Why??????? Why is the only medication that has worked doing this to him? The hallucinations are gone and his behavior is good. He has bounced back to where he was developmentally. It is amazing what this medication has done for him. All these years. All this misery for him, all this pain for me. I knew it would go up with the increase. I have done so much research on this his psychiatrist says I know more than they do. Scary.
I know Im whining but I cant help myself. This is the only safe place I can come to.
I hope you are OK.
Sidney
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Old 06-25-2004, 08:46 PM
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I could cry with you Sidney. I am so sorry.

Isn't there anything they can give him with the clozaril to prevent that?

I don't know what to say. I wish I had some answers for you.

I found this link

http://www.qtsyndrome.ch/management.html

Just know that I care so much!!! and we're here for you.

Hugs
 
Old 06-25-2004, 09:00 PM
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<BODY BGCOLOR="#CCFF99" TEXT="#000000" LINK="#3300FF" VLINK="#9933FF" ALINK="#33CC00" BACKGROUND="http://home.dwave.net/~bjojade/heart.gif">

<bgsound src="http://midistudio.com/Studios/Deb/myheartwillgoon.mid"loop=20>

One day a young man was standing in the middle of the town proclaiming that he had the most beautiful heart in the whole valley. A large crowd gathered and they all admired his heart for it was perfect. There was not a mark or a flaw in it. Yes, they all agreed it truly was the most beautiful heart they had ever seen.

The young man was very proud and boasted more loudly about his beautiful heart.

Suddenly, an old man appeared at the front of the crowd and
said "Why your heart is not nearly as beautiful as mine."

The crowd and the young man looked at the old man's heart. It was beating strongly, but full of scars, it had places where pieces had been removed and other pieces put in, but they didn't fit quite right and there were several jagged edges. In fact, in some places there were deep gouges where whole pieces were
missing.

The people stared -- how can he say his heart is more beautiful,
they thought?

The young man looked at the old man's heart and saw its state
and laughed. "You must be joking," he said. "Compare your heart with mine, mine is perfect and yours is a mess of scars and tears." "Yes," said the old man, "Yours is perfect looking but I would never trade with you.

You see, every scar represents a person to whom I have given my love - I tear out a piece of my heart and give it to them, and often they give me a piece of their heart which fits into the empty place in my heart, but because the pieces aren't exact, I have some rough edges, which I cherish, because they remind me of the love we shared. Sometimes I have given pieces of my
heart away, and the other person hasn't returned a piece of his heart to me.

These are the empty gouges -- giving love is taking a chance. Although these gouges are painful, they stay open, reminding me of the love I have for these people too, and I hope someday they may return and fill the space I have waiting. So now do you see what true beauty is?"

The young man stood silently with tears running down his cheeks. He walked up to the old man, reached into his perfect young and beautiful heart, and ripped a piece out. He offered it to the old man with trembling hands. The old man took his
offering, placed it in his heart and then took a piece from his old scarred heart and placed it in the wound in the young man's heart. It fit, but not perfectly, as there were some jagged edges.

The young man looked at his heart, not perfect anymore but more beautiful than ever, since love from the old man's heart flowed into his. They embraced and walked away side by side.

How sad it must be to go through life with a whole heart.

 
Old 06-25-2004, 09:19 PM
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Heart

MG,
Thank you. The story made me cry, which is fine. I fight tears.
I am going to push for a beta blocker which may bring Jared's QT down. For some reason they dont want to do this. I have an appointment with his doc on Monday.

Floating on air,
Sidney
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Old 06-26-2004, 08:30 PM
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MG,
I am becoming more and more depressed by the day. At this point I feel like I am causing Jareds death prematurly (emotional). Intellect tells me this is the only path.
I am torn always, and can find no peace.
Hope you are well,
Still banging my head against the wall,
Sidney
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Old 06-27-2004, 01:55 AM
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I don't know about any of this the way that you do, but lets walk through it.

What about the permanent pacemaker and cardioverter-defibrillator implantation? Can you ask about it?

How aware is Jared of what is happening to him? How miserable is he? Not what you see, but what he feels.

If you were to lower the medication and let him suffer there could be a treatment in 10 to 20 years that would greatly improve his mental state. I know I suffered greatly for 20 years. Would that be something he could live with?

What does Jared want? Is he old enough to understand? Have the risks been explained to him? Does the risk of death outweigh the suffering from living without the medication? If you knew that there would be treatment in the future would you take the same risk?

There is no easy way out of this for now. Not for you and not for him. It's an extremely hard place to be in.

Clozaril and a pace maker seems like the best solution if the beta blockers don't work. Maybe you could back off the Clozaril until you explore these options.

You are doing everything you can and you're faced with really hard choices. I know you must also feel like you're trapped with no way out. That's a scary place to be and it can cause some major depression. I think a therapist would really be good for you while you go through this. It's too hard to do this alone.

We're all here for you.

Hugs,
MG
 
Old 06-27-2004, 09:03 PM
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Homework

MG,
You obviously took some time to do some research (as we all know you do this on a regular basis). I thank you for your time and concern. It means the world to me.
Jared is not aware of the danger. He is too young developmentally to grasp the concept and it would overwhelm him. He only worries about me dying. He's only about eight years old developmentally. There is no way I would even go there with him. He would not understand and it would only cause him undue fear, on top of his other fears.
Without the medication he is delusional, hallucinates, suicidal , and lots of other junk. Even backing down on it he backslides drastically within a couple of days. Waiting 10 or 20 years is out of the question. He already has a 20 per cent chance of commiting suicide. It is hearbreaking to see him when he is psychotic. I cant bare it anymore. He becomes terrified from the voices and then becomes extremely violent becouse of his fear. It is bad. It usually takes a team of 6 adults (mostly men) to contain him. Then I have to leave and I can hear him screaming for about two blocks away. Its killing me.
No one but you knows what this is doing to me. I am going to talk to his doc tomorrow and REALLY push the betablockers.
On top of this whole mess his father calls him (the 280 pound , unmedicated, abusive, parinoid schizophrenic). For some reason, the staff the other night, told Jared that they were going to tell Ron his phone calls were being monitered (sp). Jared begged them not to tell them. I am livid. Not only did they put Jared under undue stress but they put my life in danger. If Ron knew that his phone calls were being listened too he could go into a rage and very well end up on my doorstep. Jared is not stupid, he knew I would suffer the consiquences. I am going to raise hell tomorrow. This happened Friday night. I am tired of dealing with STUPID people. I no longer have the patience for them. Lets just put gasoline on the fire. Idiots!
Why do these staff members open there mouths with totally unappropriate conversaton??????????????????????????????????
Thanks for listening,

Hope you are well,
Blessings,
Sidney
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Old 06-28-2004, 12:22 AM
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They shouldn't have involved Jared in that conversation.

Raise hell. It will make you feel better and they'll learn not to do that again.

Let me know what the doctor says. I hope they'll try it!!
 
Old 06-28-2004, 01:36 PM
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Raising Hell

MG,
I did raise hell today with Jareds therapist about the monitoring of Rons calls. I explained the dangers involved. I told him not to have them monitored at all. Ron seems somewhat stable right now. I will know when he goes into the big donward spiril because I can see it coming. Im not going to worry about the phone calls right now. Since the staff (not all) are ignorant of the consequences of their stupid conversation I would rather not have them in a position to make any comments at all .
I talked to the doc about the beta blockers. I need to do more research on it. I think I will print a few things out and give them to her. She will be talking to cardiology today and see what they think. Jareds QT today was 458 which is alot better than 488. Unfortunatly this doesnt tell us much yet as he will have several in the 480's and then a couple lower ones and then it jumps back up again. This has them baffled. Friday will be another EKG. We shall see. An internal defibrulater is a last option and usually used when the patient has a history of fainting. Its ironic though because so many of the times a paient will faint and then just die suddenly.
Thanks again for your support and interest.
Hope you and your family are doing well.
Blessings to you.
Sidney
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Old 06-28-2004, 08:37 PM
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I was going to ask our pharmacologist about it yesterday, but we had a situation and there wasn't time. The next time I can catch him I'll ask him what he thinks too.

Try to get some rest Sidney.

Hugs,
MG
 
Old 06-28-2004, 09:11 PM
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Mg

Thanks,
You do more than anyone should. You get some rest.
Sid
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Old 07-01-2004, 08:15 PM
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Inderal

MG,
One day on a betablocker and Jared had hallucinations. Hard to tell. With this med,it is a very rare occurance, but you know Jared by now. If there is a rare side effect he gets it.
They want to discharge him next week. Might as well ,as we are not progressing in any way. He might as well be at home. We have an appointment with the cardioligist specialist on Aug 6th.
There's more but its petty.
I hope you and your daughter are doing well. I hope your son is hanging in there. Let me know.
Blessings,
Sid
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Old 07-02-2004, 05:47 PM
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We're all well. My daughter is still experimenting with medications for her daily migraines. They said if they can find something to knock them out for 6 months then they might not come back. My grandson is doing wonderfully with his on Depakote. Adults are much harder to treat.

My son was ordered into anger management classes and alcohol classes so I'm happy about that. Anything helps.

I hope Jared gets over the side effects and the meds work!!!

Hugs to you both,
MG
 
Old 07-02-2004, 08:27 PM
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Hallucinations

Jared is still having hallucinations and today his QT went up some. I could of predicted all this.
We will be celebrating his 15th birthday on Monday, even though he turned 15 on Wed. Monday is the only day I could get everyone together, meaning all
the other kids.
From my reasearch on this medications and other psychotropic meds , his life will be shortened alot. Maybe as much as only ten years more. But I will thrive to make his time the best. The inderal did't help. Two low doses threw him into a psychotic state. Hard to tell if it was the meds or just Jared. Thank you for the update on your kids. It matters to me how your family is doing as well. I'm glad your son is getting treatment. Only time will tell (nothing new to you). I hope your daughter will soon be feeling better. I hope you are doing well. Your support is priceless.
Blessings and Love,
Sidney
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Old 07-03-2004, 09:47 AM
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You're doing everything you can Sidney.
That's all you can do.

Did they discontinue the inderal?
 
Old 07-03-2004, 10:26 PM
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Haunted

MG, I am going to ask medicaid to pay for a defibulator.
I am sick all the time. Jared was weak and having pain in his neck. I could puke . I feel like I have given him a death sentence but at the same time a life to live. I am so confused and so tired. My moods are becoming uncertain. I was doing so well. Now I cry when I'm driving because then no one can see me. I don't want anyone to see me. I want to be hidden. I want to hide from myself.
I have decided to go on the nicotine patch to stop smoking. Probably in the next couple of days. I told my room mate he would have to smoke outside. With my cardiac problems its just plain stupid to smoke. I need to be here for Jared and am tired of the heart meds. Maybe if I quit smoking the angina might go away. Will stay on the wellbutrin though.
Im trying to figure out how to do this when I dont give a sh*# about myself. I think my motivator is just to be here for Jared. If my health is good then I will be here for the rest of his life.
Thank you for the update on your family. I care about you and dont like things to be so onesided.
Love to you and your family,
Sid
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Old 07-04-2004, 01:47 AM
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I wish I had some words of wisdom, but I don't. You know the depression causes us not to care much about ourselves. When we go through all these emotions we don't want people looking at us. Everyone seems to be living life around us and we feel like we are in a bubble by ourselves.

We've experienced a lot of loss and trauma and I don't know if "happiness" will ever really be a part of my life, but I've learned to be content and that's a lot better than it used to be.

You're still in the middle of the battle. When you've tried everything and done all that you can you will grieve and come to a place of acceptance. There is always hope, but we can't live in the hope. We need to live in the here and now and make it the best we can even when it doesn't have a lot to offer. 15 years ago I lived in emotional pain. I never thought I would feel as good as I do today. 15 years from now there may be even more healing. We can't judge the future by what we're like today. We can feel better even though our circumstances don't improve. We can learn to do it from the inside out.

It's 2am here and I'm starting to ramble so I better stop. You're not alone Sidney. The doctors wouldn't give Jared the medication if they didn't feel it's the best thing to do too. I don't know a lot, but the defibrillator sounds like a good plan. If you start to feel too depressed please go talk to someone. I know it can get really hard and there is only so much we can take.

Hugs,
MG
 
Old 07-04-2004, 04:20 AM
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Sidney,
Just jumping in here to send you a big
MG is right.
Talk to someone about the depression.
You have a lot on your plate right now.
Let someone help you.
Sending light and love your way,
Gabe
P.S. Hugs to Jared too.
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Old 07-04-2004, 06:29 PM
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Mg

MG,
Your not rambeling I always enjoy talking to you. I forgot to answer your question about the inderal. They stopped it . Jared had only had 2 low doses. It caused him extreme aggitation. I dont think it caused the hallucinations. I think the move to a different cottage caused him the anxiety then the hallucinations. See how fragil he is??
I hope you have a nice 4th. We took Jared to see Spiderman II today. He had a blast. Afterwards we got him lunch at McDonalds. After we took him back we bought his birthday present, a really neat scooter . Not one of those small ones. This is bigger and has a seat. I drove it down the dirt road here. Really fun. Geoff (roomate) wanted to get it for him. It was pricey. I think it will be good for his eye-hand cordination and balance. He will have to wear a helmet of course.
After that I went to my self defence class. Im really enjoying them. I cant remember if I told you I was taking them. Its a one on one class and he doesnt charge that much. I want to be able to stop Jared from hurting himself safely. Also want to stop getting injured so much during his rages.
All and all it was a busy day.
Blessings and Love to you and yours,
Sidney
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Old 07-04-2004, 06:33 PM
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Thoughtfulness

Gabe,
Thank you for your kind response. Thank you for caring. I'm trying to deal with my own depression right now on my own. I dont seem to have enough time to get the things done that I need to. Coming here helps alot.
I hope you and your family are well.
Again, Thank you.
Blessings,
Sidney

PS. Please jump in whenever you have time. It might take some of the burdon off of MG. She is so good to me.
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