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Brandon came home on Thursday, with my insisting. He is only on Lithium and his vitamins. We have an appointment on Tuesday with a new doctor, one whom is famous in our county. I really hope it helps.
Everything was going semi ok until tonight. I caught him in the constrution area with the kid that is a bully to him and he is definately not a good influence. I grounded him for the rest of the weekend. He was walking around like he had a major attitude without saying much. When we got inside he started crying and saying how dumb he is and that he should'nt be alive. He then went and said theat he is hearing things and started flipping out bc he had to lock all the doors bc someone was going to get him. He keeps saying I'm not safe. After he locked everything he ran upstairs and started crying uncontrolably. He was rocking and could not talk. He then said that he needed to go back into the hospital, and I do not want to repeat that mess again.
Now I am sitting here baffled bc he seemed fine, except for irritablity and a lot of frustration. Now we come to this point again, where we are stuck ing the same place as we were before. Only this time he seems worse with the paranoia. He has never had it to this extreme. I suppose that all the antipsychotics have worn off by now and are completely out of his system. He also has not eaten today. He keeps telling me that he is not hungry and I made him eat something little so he could take his meds.
He is in his room now, hopefully calming down and maybe reality will set in again. I don't know what to think anymore. We will see what tomorrow brings and hopefully the doc that we see Tuesday will restore our hope. I also put in an application for the Hope Fund at Pfeiffer. I am hoping that we can get that bc I don't have the funds to get him evaluated. We need something, anything that will help him. And the school year is drawing near and I am afraid for him. We will see. I hope we can have a better school year this year. He so badly needs to have some normalcy in his life.
Brandon is being discharged by the end of the week. They have not started him on an antipsychotic bc they don't feel it is necessary. Brandon told me yesterday that he was hearing things again and he also told me that he was not ready to come home. I told him to talk to the doc today and he didn't.
I got his medical records, at least what is done and in the computer. There are so many errors and it does not make sense at all. I had my friend, who is a psychologist review them and she said they were the worst written evals she has ever seen. They don't make sense. And there is a comment in there that I want Brandon to be ill. I don't think so! If I could take this away from him I would! I am sick of all the docs and therapists and OT, and school meetings, why would I want to do this? I don't want to do it any more, but I have to. I am taking the records with me in the morning and asking them to edit them.
They want Brandon to go to day treatment, but when I asked them about objectives for this and she said not to start new meds. Well, maybe I don't want to waste the rest of his summer in day treatment, where they are not going to do anything any way. I am planning on telling them if they think that Brandon needs day treatment, then arrange it at the other hospital, otherwise he is coming home with me. I do not want him there anymore. They are making me out to be crazy!
Just now, I got a call from my brother from VA. He is flying in tomorrow and asked if he could stay the night. I look around my house right now and it is trashed. I have not had the time or energy to pick up anything since the crisis started. Brandon's stuff is all over the place and I have dishes to do, not to mention washing sheets. I think I am starting to go crazy! I hope I get somewhere with the hospital. I am just worried they are going to try to take it to CPS bc I am not excepting there placement recommendations. I don't really care anymore. At least I know the CPS worker and she understands kids like mine.
I have been at my convention for the past couple days so it has been hard for me to fit everything in. I missed the resident's call yesterday and she left me a message stating that she was going into meetings and that she would try me after she was done. She never called. Last night after I got home, I called to talk to the night nurse to see how he has been and she said that they increased his Visteril for sleep and added an additional dose if he wasn't asleep in an hour. Well, the night before I had them cut it down to 12.5 mg bc he was having trouble waking to go to the bathroom. They did that for 1 night, that's it! He had trouble falling asleep, I think he was being stubborn about another issue and was on a strike. Today was his first day off Abilify.
The resident calls me today and says, well we recommend he go to RTC for a 30-45 day eval and we take him off of everything. I told her there is no way I am putting him through that again! We did it last summer and it was the hardest thing for me to ever do and I refuse to do it again. Then she said well I am putting that down as our first recommendation! Then she said day treatment, which is fine for me if I she that it is helping. She said, but I don't think that you can handle it at home. Excuse me! Then she said there was no one on the U Team that would put him on Clozaril. Well then. Then she says we would like to start Buspar, but on higher dosages than he was on before! I said, we've been there, done that and it is an antidepressant, Brandon does not do well with them and they are known for making kids more suicidal! He needs an AP not an AD! I was so upset that I could not even focus much for the rest of the morning. I had a really hard time. They are not denying that he is schizophrenic or schizoaffective, she just won't treat something she can't see. They have documented thought disorder in his chart from the doctor that over sees the resident. I know Brandon doesn't feel comfortable talking to people, especially if they are new to him. Apparently his reg doc is going to see him tomorrow. We will see what she says. Now he is only on Lithium and will be coming home on that and only that at some point next week. "They are observing him." Whatever, I just want him to have the right treatment that will make sure that we see some stability and that I know he is safe.
I am so frustrated with the hospital and there whole system. I am so tempted to pull him out and take him to the other hospital where at least I would be contacted before they touch a med or a parent is viewed more as a partner in my childs care. I am hoping to get him into the NIMH research study, but that would be packing up and leaving everything behind. It may be his only hope. We can just pray that things will work out for him, no matter what happens.
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!