Update time!
Thing One has finally come home (WOOT WOOT)!!
After a very LONG two weeks, and very expensive parking - I have my boy back where he belongs. The first week was SOOO difficult, with the continuing hallucinations and depersonalization - but we've conquered it.
The consensus is - the psychosis was induced by the anti-depressant Prozac. Let this be a warning to all other parents out there... avoid AVOID AVOID this drug. Thing One started taking it after Zoloft failed to help with his anxiety disorder, back in late December or early January. It wasn't until late March that he began presenting with the psychotic symptoms, and they got progressively worse. He lost his personality, his feelings (complete apathy), became very aggressive and harbored suicidal and homicidal ideation. When he was initially hospitalized, they weaned him from this drug while continuing the Seroquel (because it has anti-anxiety properties). The first week didn't produce much change (as you've read earlier), but once it began to exit his system we experienced a GREAT improvement.
Prozac builds in the body and takes time to exit the system. It can take a few weeks before it finally leaves the body, and once it began happening, Thing One's psychotic symptoms disappeared one by one. He did (and still does) have wicked mood swings since coming off the Prozac. I'm not sure what we will need to do for that, but I'll take mood swings over hearing voices ANY DAY. He continues on the Seroquel, and Dr. Brain advised me that his anxiety levels are really much higher than we initially anticipated. According to them, there is actually very LITTLE time during the day that he isn't at an extreme level of anxiety. Which sucks, because he has Generalized Anxiety Disorder, so there is no way to remove him for a break from whatever makes him anxious. It is everything and nothing, all the time.
DO NOT give this drug to your children! When I consented to this medication, I WAS NOT informed of this side effect! I asked very specifically what we could expect or should watch for and I was told that these types of side effects are so negligible that it didn't even need to be discussed!
Not.
True.
Prozac made my son into a different person. Instead of controlling his anxiety and making his life easier to live it turned him into a possible schizophrenic. Be AWARE of these things, lend credit to what you read when you google it and remember to insist on ALL the information. There are many other options (SSRI's), but a lot of them are going to carry the same types of side effects. Try to opt for one that doesn't accumulate in the system, if you have to use them at all.
Thing One is still not better as a whole. His anxiety and ODD are still rampant however I can be sure that he will not harm himself or the rest of the family in the dead of the night. I'm sure, when he's old enough to understand what happened to him, he'd choose the anxiety any day.
Now - to just get the meds tweaked just right....
Breathing a HUGE sigh of relief, and again thanking all those who cared for us during this horrible TERRIBLE ordeal... I'm off to cuddle with my boy.
DAG
Wednesday, May 26, 2010
Tuesday, May 18, 2010
The Mental Health System is designed to make me crazy.
Dr. Brain continued to say that she wasn't sure if this was obsessive compulsive (so the hallucinations are actually obsessive intrusive thoughts and images he cannot stop) or bipolar or schizophrenia. She says his issues are complex. I broke down (FINALLY) in that meeting. She passed me a kleenex box and said "I've been waiting for you to fall apart".
*Blink* *Blink*
I hope I met your expectations. Did you have money riding on it?!?
I shared with her my GREAT concern that the staff isn't observing Thing One. They said Sunday morning (when my Mom and brother and I arrived) that he had a great morning.
Yet, he came out of the lounge looking like his best friend had just died. I seriously appeared like he was going to burst into tears at any moment. But when we asked, he said "I'm fine". Clearly NOT fine. Clearly NOT "great". He sat across the room doodling on a magnet board in the window sill and did not interact with us for some time.
I told Dr. Brain that I was worried that he was going to come home at square one and I'd be sleeping across his doorway again because he thought he'd harm himself or others. She said she was committed to finding out how to help him, that his issues were "complex" and that we couldn't live like we were before he went in. Obviously.
The afternoon only got worse. I took him to a movie on a day pass. Half way through (everything had been fine and he'd been laughing just a moment ago) he suddenly sat up in his seat and looked at me like I was an alien. He said "Mommy?" like he was surprised to see me there. I said yes? Then he said something mumbly and quick, which I thought I heard "we need to go back". I said, go where? He stared at me and slowly said, Nevermind. I said, "what's wrong?". He looked around and said slowly, "nothing". I said "are you confused"? He clearly seemed disoriented and unsure. He said, "yeah, I didn't really know where I was for a few minutes". He then asked to leave although we were only an hour into the movie. On the way out he said he needed to go to the bathroom, and asked me to hold Jack the dog.
He was in there for 20 minutes. Aftermath showed up and I sent him in to check on Thing One. Apparently, Thing One hasn't pooped the whole time he was at the hospital (almost a week now), so he was clearly clearing the decks. We waited outside. When he came out finally he told Aftermath about that moment in the theatre and how he had no idea where he was for a few moments. Then we decided to go to the park so he could ride his scooter. In the car he burst into tears again and I asked what was wrong. He told me he was just "so proud". I said proud of what? He said proud of Jack. I said why? He said "because when I was in the bathroom trying to poop I could hear Jack saying "you can do it!", I've never had a stuffed animal that encouraged me and talked to me and I'm so proud that he helped me through it". He sobbed away in my backseat.
WHAT THE HELL IS GOING ON WITH HIM.
When we got there, he rode around for a few minutes and then went across the parking lot from us, sat down on the concrete with his back to us and sat for a good 5 or 10 minutes. Then he wanted to go to the playground part, so we did. He slid down the slide once and then laid down on the rocks and just stayed there. I finally took him back to the hospital. I talked to the nurse, who mused perhaps I am a trigger for his anxiety and so is the dark. I looked at her sideways because she's clearly out of her god-damn mind.
He had a good day today, I spent a good chunk of the day with him. Except he really has no interest in me. I get there and he goes off to play in the lounge or the gaming room and wants me to wait in his room till he gets back. I don't understand why my son doesn't want to be around me.
I met with the other doctor (Dr. K) who runs the unit and he's telling me that Thing One's continuing on the Seroquel but he doesn't think this is bipolar or schizophrenia and that Noah's hallucinations are a product of severe anxiety. I don't understand that either, its not like these things happen when he's uber-anxious. They just do randomly. So from the sounds of it, I'm going to have a little boy coming home on an anti psychotic and a new SSRI (he's talking about starting Luvox now), which in my opinion leaves us in the EXACT SAME POSITION WE ENTERED UNDER. I'm so frustrated Ive been crying my eyes out because I feel like I did this to him for nothing. I justified the trauma of staying in the hospital by thinking that they'd get to the bottom of what was happening with him. It clearly is not the case. Also - I don't think the left hand knows what the right is doing, especially because both Dr.s are talking about totally different disorders and totally different symptoms. I'm going OUT OF MY MIND.
I really feel like no one is in our corner or committed to helping my son alleviate what is clearly TORMENTING him.
And it's tormenting me.
Clearly.
*Blink* *Blink*
I hope I met your expectations. Did you have money riding on it?!?
I shared with her my GREAT concern that the staff isn't observing Thing One. They said Sunday morning (when my Mom and brother and I arrived) that he had a great morning.
Yet, he came out of the lounge looking like his best friend had just died. I seriously appeared like he was going to burst into tears at any moment. But when we asked, he said "I'm fine". Clearly NOT fine. Clearly NOT "great". He sat across the room doodling on a magnet board in the window sill and did not interact with us for some time.
I told Dr. Brain that I was worried that he was going to come home at square one and I'd be sleeping across his doorway again because he thought he'd harm himself or others. She said she was committed to finding out how to help him, that his issues were "complex" and that we couldn't live like we were before he went in. Obviously.
The afternoon only got worse. I took him to a movie on a day pass. Half way through (everything had been fine and he'd been laughing just a moment ago) he suddenly sat up in his seat and looked at me like I was an alien. He said "Mommy?" like he was surprised to see me there. I said yes? Then he said something mumbly and quick, which I thought I heard "we need to go back". I said, go where? He stared at me and slowly said, Nevermind. I said, "what's wrong?". He looked around and said slowly, "nothing". I said "are you confused"? He clearly seemed disoriented and unsure. He said, "yeah, I didn't really know where I was for a few minutes". He then asked to leave although we were only an hour into the movie. On the way out he said he needed to go to the bathroom, and asked me to hold Jack the dog.
He was in there for 20 minutes. Aftermath showed up and I sent him in to check on Thing One. Apparently, Thing One hasn't pooped the whole time he was at the hospital (almost a week now), so he was clearly clearing the decks. We waited outside. When he came out finally he told Aftermath about that moment in the theatre and how he had no idea where he was for a few moments. Then we decided to go to the park so he could ride his scooter. In the car he burst into tears again and I asked what was wrong. He told me he was just "so proud". I said proud of what? He said proud of Jack. I said why? He said "because when I was in the bathroom trying to poop I could hear Jack saying "you can do it!", I've never had a stuffed animal that encouraged me and talked to me and I'm so proud that he helped me through it". He sobbed away in my backseat.
WHAT THE HELL IS GOING ON WITH HIM.
When we got there, he rode around for a few minutes and then went across the parking lot from us, sat down on the concrete with his back to us and sat for a good 5 or 10 minutes. Then he wanted to go to the playground part, so we did. He slid down the slide once and then laid down on the rocks and just stayed there. I finally took him back to the hospital. I talked to the nurse, who mused perhaps I am a trigger for his anxiety and so is the dark. I looked at her sideways because she's clearly out of her god-damn mind.
He had a good day today, I spent a good chunk of the day with him. Except he really has no interest in me. I get there and he goes off to play in the lounge or the gaming room and wants me to wait in his room till he gets back. I don't understand why my son doesn't want to be around me.
I met with the other doctor (Dr. K) who runs the unit and he's telling me that Thing One's continuing on the Seroquel but he doesn't think this is bipolar or schizophrenia and that Noah's hallucinations are a product of severe anxiety. I don't understand that either, its not like these things happen when he's uber-anxious. They just do randomly. So from the sounds of it, I'm going to have a little boy coming home on an anti psychotic and a new SSRI (he's talking about starting Luvox now), which in my opinion leaves us in the EXACT SAME POSITION WE ENTERED UNDER. I'm so frustrated Ive been crying my eyes out because I feel like I did this to him for nothing. I justified the trauma of staying in the hospital by thinking that they'd get to the bottom of what was happening with him. It clearly is not the case. Also - I don't think the left hand knows what the right is doing, especially because both Dr.s are talking about totally different disorders and totally different symptoms. I'm going OUT OF MY MIND.
I really feel like no one is in our corner or committed to helping my son alleviate what is clearly TORMENTING him.
And it's tormenting me.
Clearly.
Gratitude
Hello to all of you who have commented to me, de-lurked and made your presence known, or have just began reading Between the Crosshairs.
This is just a small note to thank you all for sharing your best wishes, your generous offers and your positive energy. You do NOT know how much that means, to know that somewhere, you are not alone.
Mental illness lives under stereotype and stigma. It is not treated like a terminal illness, yet in some ways it really is. Often you do not have a diagnosis, and most often, no cure. I am fighting for my son because he cannot fight for himself. It's a long hard road, and sometimes - when the day has kicked me right in the heart - when I am paralyzed and feeling UTTERLY on my own - coming home to read that someone else, somewhere else in the world - is rooting for us: it helps.
It's like a hug you can't feel, a casserole on your doorstep when you get home - sometimes - it's the one thing that allows you to set aside your stone face and courage for a moment and just cry.
Thankyou. It is everything.
New post coming tonight.
Much Love
DAG
This is just a small note to thank you all for sharing your best wishes, your generous offers and your positive energy. You do NOT know how much that means, to know that somewhere, you are not alone.
Mental illness lives under stereotype and stigma. It is not treated like a terminal illness, yet in some ways it really is. Often you do not have a diagnosis, and most often, no cure. I am fighting for my son because he cannot fight for himself. It's a long hard road, and sometimes - when the day has kicked me right in the heart - when I am paralyzed and feeling UTTERLY on my own - coming home to read that someone else, somewhere else in the world - is rooting for us: it helps.
It's like a hug you can't feel, a casserole on your doorstep when you get home - sometimes - it's the one thing that allows you to set aside your stone face and courage for a moment and just cry.
Thankyou. It is everything.
New post coming tonight.
Much Love
DAG
Labels:
Agents In Training,
child psychosis,
The Inner Agent
Monday, May 17, 2010
Humanary Stew
Consider this a braindump.
Or a heartache.
A headache.
A heartbreak.
Call it what you may. The lines are nothing but blurred.
Last week, Thing One was hospitalized. After a LOOOONG and scary weekend with thoughts of harm and hallucinations, Dr. Brain decided to admit him to pediatric psych for a "period of observation". This was tough for me. I listened to my 9 year old son tell me he needed to be at the hospital because we weren't safe, and I believed him. So, he rots on the unit.
The idea is that he's under the watchful eye (24/7) of trained professionals, and although this is a traumatic event for my child, the trauma is mitigated by the hope of getting to the bottom of it all. Since I spent the weekend sleeping on a couch barring Thing One's door so he couldn't get out or hurt himself in the night, I agreed.
I have been assured by the staff not to worry or be "discouraged if Thing One doesn't demonstrate the behaviours on the unit". That it can happen often, especially when children are as young as Thing One. I have been assured that "they believe him and me". That there is no set discharge date and its a game of wait and see. That he will have a CT Scan and an EKG to rule out organic causes. That WE WILL GET TO THE BOTTOM OF THIS.
I f**king doubt it.
So this is Thing One's world now. He has the run of the place (cause he's just a lil' guy). He watches what he wants, plays when he wants, orders his dinners according to what he wants, and SAYS NOTHING to them. They tell me he's having a great day, that he's adjusting well and happy and polite.
Even though he calls me and my father five times a day to check that "we're safe". Even though on the first night he heard voices talking in his bathroom. Even though he heard them again the next morning while he was showering. Of course, there was no one else in his PRIVATE ROOM AND BATHROOM. He's doing just fine even though they've taken away the Prozac and his moods flip faster than a pregnant lady out of pickles. That he hates me and then cries and then is normal and then hates me again. All within TEN MINUTES.
Yeah. He's fine. Fricken PEACHY.
So I should think nothing of the fact that on Saturday he LOST HIS FRIGGIN MIND when I said I wanted to talk to the nurses about his meds. That he didn't become so angry that he demanded that I DO NOT talk about him to the nurses. That if I do, he'll have to stay even longer and he DOES NOT want to stay. That when I took him out to dinner with his Grammy on a day pass he DID NOT stomp his feet and tell me "IF you tell, I STAY". Because we just had a lovely dinner together. He certainly did not burst into tears in my backseat and confess (and Tink was there to hear it) that "the man" is talking to him at night and telling him not to dare tell the nurses that he hears him. That telling them that means he has to stay forever. That my wee little boy is hiding the things that torment him because THEY LIE to him.
Except he did. He cried and he talked about the voices still tormenting him and his belief that "the man" must travel with him because he doesn't go away. That he doesn't feel safe at the hospital because the man is there. All the while, he is stuffing his toy dog "Jack" into an empty cereal box and telling me Jack is scared too. That when his tears come hard and fast and he shares his fears that he ACTUALLY WHIMPERS when he tries to speak.
But he's fine.
Adjusted.
So guess who has to tell the nurses the truth??
Yeah that's me.
Miss Munchausen.
Or a heartache.
A headache.
A heartbreak.
Call it what you may. The lines are nothing but blurred.
Last week, Thing One was hospitalized. After a LOOOONG and scary weekend with thoughts of harm and hallucinations, Dr. Brain decided to admit him to pediatric psych for a "period of observation". This was tough for me. I listened to my 9 year old son tell me he needed to be at the hospital because we weren't safe, and I believed him. So, he rots on the unit.
The idea is that he's under the watchful eye (24/7) of trained professionals, and although this is a traumatic event for my child, the trauma is mitigated by the hope of getting to the bottom of it all. Since I spent the weekend sleeping on a couch barring Thing One's door so he couldn't get out or hurt himself in the night, I agreed.
I have been assured by the staff not to worry or be "discouraged if Thing One doesn't demonstrate the behaviours on the unit". That it can happen often, especially when children are as young as Thing One. I have been assured that "they believe him and me". That there is no set discharge date and its a game of wait and see. That he will have a CT Scan and an EKG to rule out organic causes. That WE WILL GET TO THE BOTTOM OF THIS.
I f**king doubt it.
So this is Thing One's world now. He has the run of the place (cause he's just a lil' guy). He watches what he wants, plays when he wants, orders his dinners according to what he wants, and SAYS NOTHING to them. They tell me he's having a great day, that he's adjusting well and happy and polite.
Even though he calls me and my father five times a day to check that "we're safe". Even though on the first night he heard voices talking in his bathroom. Even though he heard them again the next morning while he was showering. Of course, there was no one else in his PRIVATE ROOM AND BATHROOM. He's doing just fine even though they've taken away the Prozac and his moods flip faster than a pregnant lady out of pickles. That he hates me and then cries and then is normal and then hates me again. All within TEN MINUTES.
Yeah. He's fine. Fricken PEACHY.
So I should think nothing of the fact that on Saturday he LOST HIS FRIGGIN MIND when I said I wanted to talk to the nurses about his meds. That he didn't become so angry that he demanded that I DO NOT talk about him to the nurses. That if I do, he'll have to stay even longer and he DOES NOT want to stay. That when I took him out to dinner with his Grammy on a day pass he DID NOT stomp his feet and tell me "IF you tell, I STAY". Because we just had a lovely dinner together. He certainly did not burst into tears in my backseat and confess (and Tink was there to hear it) that "the man" is talking to him at night and telling him not to dare tell the nurses that he hears him. That telling them that means he has to stay forever. That my wee little boy is hiding the things that torment him because THEY LIE to him.
Except he did. He cried and he talked about the voices still tormenting him and his belief that "the man" must travel with him because he doesn't go away. That he doesn't feel safe at the hospital because the man is there. All the while, he is stuffing his toy dog "Jack" into an empty cereal box and telling me Jack is scared too. That when his tears come hard and fast and he shares his fears that he ACTUALLY WHIMPERS when he tries to speak.
But he's fine.
Adjusted.
So guess who has to tell the nurses the truth??
Yeah that's me.
Miss Munchausen.
Tuesday, May 4, 2010
Groping through the fog
Dealing with child mental illness isn't easy. You cannot see it, measure its advances or prepare for attack. It's insidious, growing like cancer in the recesses of the mind and I hate it.
I keep hearing that the three most important things a mother does is keep their children happy, healthy and safe. I can do NONE of these things. Superficially I can alter their environment to promote these ideals, but when the "badness" is in his brain my hands are tied. More than that, Thing Two suffers as she continues to be his punching bag, his victim, his enemy. He is the problem AND the victim and I don't know how to make her world safe again either.
The Seroquel had been working to at least sedate him. He had been sleeping through the night without incident the first week and most of last. But its effects are slowly wearing off. Last night I found him asleep in the living room once again, awoken and frightened by "the man". I worry that he doesn't get enough rest from the torment of his demons. I worry more that he wanders while we sleep.
This weekend, Thing One threatened to kill myself and my daughter. He was raging, out of control and screamed "I'LL KILL YOU ALL!! I PROMISE YOU!!". After he calmed down, I spoke to him about that comment. He admitted that he considers killing myself and Thing Two "sometimes, but not everyday". He says the voices tell him to do it while I'm sleeping, but he's afraid I might wake up. It's chilling. Then, he burst into tears and ran from me. I grabbed him, gathered him in my arms while he sobbed that he didn't want to think those bad thoughts and he just wanted to be normal. He worries that his sick brain will never get better.
I can offer nothing to assuage him.
Last night, after one of the biggest meltdowns I've seen with him to date, he went for a walk with my dad and Thing Two. They came across some dandelion puffs and made wishes on the wind. Thing Two wishes fervently that Thing One's brain would not be sick anymore. They cried for each other. I died a little inside.
I feel like I'm sailing on the seeds of those wishes, bending to the wind and the whims of an unkind fate.
DAG
I keep hearing that the three most important things a mother does is keep their children happy, healthy and safe. I can do NONE of these things. Superficially I can alter their environment to promote these ideals, but when the "badness" is in his brain my hands are tied. More than that, Thing Two suffers as she continues to be his punching bag, his victim, his enemy. He is the problem AND the victim and I don't know how to make her world safe again either.
The Seroquel had been working to at least sedate him. He had been sleeping through the night without incident the first week and most of last. But its effects are slowly wearing off. Last night I found him asleep in the living room once again, awoken and frightened by "the man". I worry that he doesn't get enough rest from the torment of his demons. I worry more that he wanders while we sleep.
This weekend, Thing One threatened to kill myself and my daughter. He was raging, out of control and screamed "I'LL KILL YOU ALL!! I PROMISE YOU!!". After he calmed down, I spoke to him about that comment. He admitted that he considers killing myself and Thing Two "sometimes, but not everyday". He says the voices tell him to do it while I'm sleeping, but he's afraid I might wake up. It's chilling. Then, he burst into tears and ran from me. I grabbed him, gathered him in my arms while he sobbed that he didn't want to think those bad thoughts and he just wanted to be normal. He worries that his sick brain will never get better.
I can offer nothing to assuage him.
Last night, after one of the biggest meltdowns I've seen with him to date, he went for a walk with my dad and Thing Two. They came across some dandelion puffs and made wishes on the wind. Thing Two wishes fervently that Thing One's brain would not be sick anymore. They cried for each other. I died a little inside.
I feel like I'm sailing on the seeds of those wishes, bending to the wind and the whims of an unkind fate.
DAG
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