7 yr.old schizophrenia, aspergers

[Moley8]

I seem to keep writing messages, and I think I may be computer challenged (Ha ha) but today my question has changed any how.

My little boy is now 9 and is developmentally regressing, there is some PDD ...but the disorganization of his brain is unbelievable! Paranoid schiz asp was his working dx. since 7. I'm fearing its disorganized schiz. instead or undifferentiated? The stimulants have helped him to be able to draw and write again which I'm thankful for but he still struggles in all OT activities and can not stay in touch with reality. He acts like a baby and makes funny sounds a lot. Genetics has been a long dx. journey and so has neurology. He has soo many angles to his moods his therapist said in 10 yrs. she's never seen such rapid cycles. He runs into walls injuring himself one day and is flat reading a book in the dark the next. Drugs help some but not a whole lot. I want a tumor or something I can fix, I dig and dig and never find it.

Instututionalizing him long term is the advice I've gotten because he is a danger to his small sister at times but I've dedicated all time and money to the situation and refuse to give up on this little boy. I think I'm ready to understand our future. The dr. says he'll never live on his own and he'll deterioate? I don't understand what that means! I'm scared frustrated and need some one to level with me in terms I understand. It says childhood onset (7 yrs.) is a poor prognosis...but what does that mean??? Poor response to drugs, ya I can see that, regressing, ya I can see that but what will happen? If any one has to patients or heart to explain I would really appreciate it. I underatand the autism made him suseptible to the schiz. at a young age and I've come to terms that my family has done nothing wrong. It just doesn't make day to day any easier.

Thanks for listening:

Edited October 25, 2008 by Moley8

[WinterSky]

Wow you have been through a lot with this young man. He is lucky to have you. Have you gone for second opinions? I would keep trying and continue learning, doing research, understanding it all.

My heart certainly goes out to you. I really do not have any advice as I am not an expert. But I do wish you much strength and comfort. Keep talking. xxx

[Moley8]

Thank you for your support. Yes we've been other places. one inpatient facility said to look at ADHD stimulants success first and that maybe it was a complex case of ADHD, wow we literally threw a party I showered the dr. with flowers for that strand of hope. I would hang on to anything. My neurologist laughed at me and said no way and in time he has disproven that theory. The mitrocondrial study is all we have left in genetics,and that is hard to test for. My new neurologist and psy. both agree, we're treating symptoms...they gave me their sympathys and told me they couldn't believe I was still so funny and bright (cheerful). It totally freaked me out, that is just who I am bubbly life of the party...glass half full....I have a medical back ground and understand medicine but I do not have a mental illness background. My father has worked with numerous schizophrenics as well as his brother had par. schiz. I think he understands this road.. yet mixed with the pdd quality and given a young onset it feels like unsailed territory. Last yr. at this time he was in an institution for one month, I'm just glad to have him home, he still sleeps with his blankie and we have to sing rock a bye baby to him he is very young and innocent, he's brain is soo confusing to him so he tells us often.

thanks again for listening, I do believe he chose me to be his mom, and I do know there is a lesson of compassion here to be learned for many, soo many people have been touched by his story, I'm just proud of him every day for picking such a challenging path to teach the rest of us a valuable lesson.

[Moley8]

well, my son and I went to the neurologist today and he said basically to sum it up there are soo many co morbidities going on that is why we have such an inconsistant life right now and when one condition is dominant I get my hopes up the others are gone, but no need to worry they are all still there (that was sarcasm). I guess ADHD, autism, and schizophrenia are tricky to map all mixed up together. We started anti psychotics again along with mood stabelizers, stimulants and sleeping meds. and are down to auditory hall. only and more stable behavior. The problem is he balances and goes back down each time, then we increase, switch meds. etc....you get the picture.... I do not want to find peace and hope this time because I finally have hit the acceptance that one pill, or combination of pills will "fix" his suffering. He told me schizophrenia was not a progressive condition, I thought otherwise at least in children. Hope he's right but part of me thinks he pitys by big green eyes welted with tears of pain and exhaustion. He said good luck to you. I will put this out of my head b/c it is not my job to worry as much as I do and I will start acting like a survivor. People go through way worse things than this and I need to live through a power of grattitude. I'm also the mom that always wins the my kids the most creative an unique kid award, and that's special too. Thanks for listening

[WinterSky]

well, my son and I went to the neurologist today and he said basically to sum it up there are soo many co morbidities going on that is why we have such an inconsistant life right now and when one condition is dominant I get my hopes up the others are gone, but no need to worry they are all still there (that was sarcasm). I guess ADHD, autism, and schizophrenia are tricky to map all mixed up together. We started anti psychotics again along with mood stabelizers, stimulants and sleeping meds. and are down to auditory hall. only and more stable behavior. The problem is he balances and goes back down each time, then we increase, switch meds. etc....you get the picture.... I do not want to find peace and hope this time because I finally have hit the acceptance that one pill, or combination of pills will "fix" his suffering. He told me schizophrenia was not a progressive condition, I thought otherwise at least in children. Hope he's right but part of me thinks he pitys by big green eyes welted with tears of pain and exhaustion. He said good luck to you. I will put this out of my head b/c it is not my job to worry as much as I do and I will start acting like a survivor. People go through way worse things than this and I need to live through a power of grattitude. I'm also the mom that always wins the my kids the most creative an unique kid award, and that's special too. Thanks for listening

There is nothing wrong with having feelings! This is your child and you are a very concerned mom! I am quite sure that doctors will be truthful with you and not cause harm. You are the boy's caregiver and as such the doctor is there for your consideration as well.

As someone who has gone through many med changes, and have in the past been considered "difficult to medicate", I can tell you that there is light at the end of the tunnel. I am sure you are keeping your concerns to yourself and not allowing your son to see them? Kids can see it in their parents. At least as a kid, I could.

Stay strong. xxx

[Moley8]

Thank you for your kind words. What have your challenges been if you don't mind me asking? My son knows his is diffrent for sure in part to his dr. telling him he has a "germ" in his brain, (so of course he wants to dig it out). I was pretty ticked about that. We down play a lot but he's got to know the severity of his thinking not being reality based so he doesn't get hurt.

[Moley8]

As I toss around all of the many labels on my sons poor head, I think about the most frustrating part of the situation:

1. I can't reason with him to stop his focus from my daughter and it is delusional based ie. he's a 30 yr. old man who lives in Oregon works at a logging factory and he adopted her so he can do what ever he wants to her, he named that the weird game. Or he becomes a robot, or prince charming he has this manipulative dark creepy side and nooo amount or antipsy.drugs help this. Let me clarify this is not a child pretending these are long drawn out delusions so the dr. explains to my husband and I. I do not like that the man tells his everyone hates him and that he's stupid. He's currently convinced there is a chip in his ear giving him supersonic hearing so he found out all the things the kids on the bus were saying about him...

2. his paranoia makes me soo nervous. He was trying to cut the tips of his fingers off in august to get the cameras out of his fingers, the man that lives at the desk with the pool in his head put them there so he can scan for those he needs to destroy. He was convinced aliens took him and implanted a chip when he was 7 and would talk to them out of his window at night. We keep him locked in his room on advice of drs. and watch everyone like hawks around here. I'm so thankful for medication and the fact that I will not give up but I hate the paraniod delusions and how impossible it is to reason with them. How tell me how a newly 9 yr old could be suffering this bad for this long? I know the future is grim, I need to live each day to it's fullest with this boy some times he's clear but those windows are getting smaller and smaller. Where is the clarity!

[nightfalls]

Hi Moley

This must be hard for you, to go through with your son. I don't know if this helps but I will offer it anyways in hopes that it will. My dad suffered very badly with this for 5 years he was in hospital and basically lost in his delusions but after alot of work and meds he got through it and is back to mostly himself I can still see some of the symptoms but really I thank God that he is better because he is still so much in my life. I worry all the time that he would get sick again and I've worryed for 10 years of this but I take it each day as well being thankful he is hear with my family. I think that this disease is hard on everyone involved but there is hope that there will be a medication that will help and be the one that makes all the difference, in time, and work, and hope that he will get through this and be himself once more. I hope that for him and you. Please take care.