August 04, 2005

Introduction, we are lost

We have been on a journey in which I wish never to repeat, nor anyone ever to have to go through what we have been through. I will start with some history, so you know where we have been , and I am sure some people can relate to this.
My son, Brandon, started having problems at 2 1/2. Nothing besides possible ADHD ever came of that until he became violent and on the edge of being kicked out of daycare at age 5. He was then cosidered ADHD and what I would call alphabet soup, the diagnoses that never end. He then was placed on stimulents and antidepressants, which put him in the hospital with hallucinations, suicidal talk, and extreme violence; at 5! Ok, so I was ignorent and was happy to see the meds go when he was in the hosp the first time, but when he was in day tx with the same doc, he refused to add anything, even though my son could not sleep and if he did he would wake up screaming. He was afraid to sleep. Instead, I was reported to CPS for "med seeking". Nothing ever came of it. A couple months before that the school called CPS saying that Brandon didn't need meds and he was over medicated. It took them 2 years to realize that I was not the cause of his problems (the school).
He was later diagnosed with Bipolar when he was 6. They even called his psychiatrist and told him that I have Munschousins by proxy bc I believe my son is Bipolar and not ADHD. That was two months after his Bipolar diagnosis.
In October 2004, everything started to change. I started seeing things that I never had seen before. Brandon was acting really odd. I knew Bipolar forward and backward and I knew something was not right. I was so scared. When I would ask him to do something, like take a shower or go up for bed, he would start laughing uncontrollably. When I would go to show him or assist him, he would continue to laugh, but would become violent. That was the hardest thing for me as a parent to remember that he couldn't control it, because I just had that anger that you get when you are at the end of your rope. Also, he was having more problems with schoolwork. I would show him how to do a math problem a couple times, he would try and he got the right answer and even started to write it down, but he insisted that it was wrong and that he couldn't do it, which started this whole emotional conversation that went from one topic to the next with no correlation, but the anger building and he just exploded.
I think it was that week or the week after that we saw the doc and we were there for 1 1/2 hours at least. The doc said "his brain is melting in front of my eyes". After the doc was done with him, he went to the waiting room and my good friend is a psychologist there and she saw him. He was playing with one of his hallucinations and started watching it fly all over the room and freaked out when my friend sat down bc she sat on "him". A week later he wound up in Mayo dispite another med trial.
Brandon has had 8 hospitalizations, one three month RTC stay, 27 med trials and we still feel hopeless. He is in the hospital right now. He went in on July 26 and He will be in another week at least. All they have done is take him off his antipsychotics, which leaves him on Lithium and nothing else right now. I got the news that they shot down Clozaril today. I just about died. My baby tried to kill himself this time because of the voices and he has already been through 7 antipsychotics! All they want to do is wait and watch as the tiny amount of Abilify gets out of his system. Brandon won't talk to them, he won't even talk to me. They are saying that they can tell if someone is having psychosis without being told. I told them, the only way I know is if he tells me, refuses to go upstairs alone, or runs out of a classroom at school. His thought disorder is very evident to me right now and they just sit and wait. Brandon is very good at hiding things and keeping them in. He also has too much insight about his illness, although he still thinks that he is only Bipolar. I think he may have a clue in, but doesn't know much. He is very manipulative in order to get out of hosp. Plus they only have 4 kids on the unit with 3 staff, very little stress. the docs don't listen. The only doc that listened was one that ran out of ideas so we went to a specialist in childhood schizophrenia and she treats me like a ignorant parent, when I am nurse that worked in a level 4 EBD school for 2 years and another 2 with the same district, plus we have experienced so many. I caught her trying to put my son on a med that has the QT legnthening EKG effect, when he had that from Thorazine just in December. I have lost faith. I have gotten a few recommendations on some doctors from friends and will be searching those aves. I am hoping that they so change there minds on the Clozaril at the hospital. I really don't see how they could choose anything else with his history. I am hoping and praying. I will post when I know more. If you have made it to the end of my son's brief life story, you either have a similar experience or are learning. Good luck to you and you can contact me too. I have a work convention the next three days so it may take a crisis for me to post. Cross your fingers!

Posted by brandonsmom at August 4, 2005 06:15 AM


I don't even know where to begin. I applaud you for putting in to words the experience and frustration you have been through and still go through. I've wanted to write a book, but don't have the heart to deal with it.

What first caught my eye was your comment about wanting to make a list of all those that have contributed to pointing fingers at you to make you in to the bad guy. I would love to file a civil suit against the so-called "experts" that twist information or downright lie to make their reports jucier. At this point I have no idea what to do, but on some strange level, it's nice to know I'm not the only one that has dealt with so much in such a relatively short time with such an overwhelming sense of sorrow. Thank you, from the bottom of my heart, for sharing your story.

Posted by: Teresa at April 8, 2006 05:04 AM

I seem to be having similar problems with both my children. they are drivingme nuts andi dont know what to do. my daughter who is 7 now talks of not being alive. My son well very sensative boy like you have to walk on egg shells. My father is diagnosed Manic Depresive, they have said this is something that i carry as well. For me I dont do meds as my dad does and i dont want to have to put the kids on anything either. maybe is there a natural vitamin or something that may help witht these troubles i am having. My son is almost 10 and well he should know better by now. Very stressed young single mother of 2 at her wits end.

Posted by: Crystal at April 10, 2006 11:57 PM

My son has is 23 years old and I still cannot get proper help for him. If only I could put a 6 month supply of meds in him. I am so frightened. Their brain disorders become your obsession, constantly trying to think of ways to fix this.I am exhausted and I am frightened for my son. I go to NAMI meetings. That is the only time I can talk to someone and not be judged. I am trying not to pity my son and not have depression. NAMI intructs us to have compassion and action. But I needed medication to deal with all the stress he creates when he is having an episode. God help us all. Remember this is a brain disorder. Not mental illness.

Posted by: Patty at May 23, 2006 03:07 AM

My child has bp 1 with a severe thought disorder.
At 8 monthsold he broke his crib from climbing. Hes always been very hyper and wild. At 5 he was diagnosed severe adhd at 6 he became psychotic from stims.
Today I'm having trouble getting the psychosis managed, puberty is making him off the hook. Hes now 14.5 yrs old. He lives a lonely life, not much friends.
I feel for you its so damn sad and so hard to cope at times.
I had two previous experiences with a resident dr at a Yale University here in Ct whom questioned my sons illness and did the blame game. I fired his ass real quick and now see the major suit I could have. Several meds all to be told he had severe adhd with a chemical imbalance that made him med resistent. They never once told me maybe bp or even told me he had a psychotic disorder nos.
Does ur son have mood swings from high to low? If yes your looking at a more severe bp, scitzos dont swing!

Posted by: vicky at June 12, 2006 04:24 AM

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Posted by: Ben at March 16, 2007 12:01 AM

Thanks so much for sharing your story. I also have a schizophrenic child--she's 11. Your story sounds just like our life. The tantrums over taking a bath or anything. Trying to get her to get through a week of school without staying home. She's getting so much bigger now and so much harder to control. My son who is 15 doesn't believe she's really ill--he can be very angry or mean to her--which of course makes things worse. Sometimes I wish I could just hide. Every nite is an arguement with those two. It's tiring. These voices are invisible enemies that always seem to win--Kelly

Posted by: Kelly Carlson at May 11, 2007 10:43 PM

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