3 Recommendations
We would like to meet/chat with other parents who have had a child in the NIMH childhood-onset schizophrenia clinical study.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Meet/Chat with Parents of COS Children
- By Ed
- Posted December 13, 2006 at 9:03 am · 2 replies
- In Childhood-onset schizophrenia
- Shared with the public
Explore topics in this discussion:
Autism Schizophrenia Counseling Childhood-onset schizophrenia
2 replies
- Oldest first
- Newest first
- By TNsunshine
- Posted August 2, 2008 at 1:18 pm
- Report post
Hello Ed! We would also like to start a support and/or communication board. Our son Wesley was dx with childhood onset schizophrenia at age 7. We confirmed that diagnosis through the COS study at NIMH Sept07-Jan08. It is an amazing program with so many specialist and resources dealing with schizophrenia in children. We gained piece of mind more than anything...we knew he was very ill but now we know we have been doing everything available to provide him the best quality of life possible. We know that the diagnosis is correct- we look forward to the day when researchers discover the gene. We are always studying and looking for new ways to improve our son's life...we would love to talk with anyone who has been in the study or considering the study.
- By Tuffy
- Posted August 15, 2009 at 3:55 pm
- Report post
Hello,
i know that you guys are looking for children with COS that have been diagnosed by the NIH. my daughter we know has COS, but because she has another diagnosis. which we are trying to disprove. apparently here in Idaho no one will diagnose her with COS,(this was from a person that owns a counseling center) because 'that would be bad" i have been told that to diagnose her with something like this condition so early would be horrible for her, because of the stigma. I did shoot back with the response of, wouldn't it be better to diagnose her with it now so we can get the best care and help for her? I just got an answer that was sad. so, i have an appointment for Primary's Children's Hospital. I have had a long talk with a doctor from that hospital. He said that what ever it is that she has they promise to get to the bottom of it. we know that she has, it's just having to wait for the appointment. is really hard. it seems that everyday there is some change in her. from her "voices" to her moods. she just turned 7 yesterday. is it really easier for you the parents to get a proper diagnoses? I called the NIH when she was almost 6, but they said that because she was diagnosed with ausburgers they couldn't help her. I want to call them back and see if thing have changed, I just might. I know that the gene from autism, is basically the same gene for schizophrenia, just a bit modified. anyway, thanks for reading this..
Tuffy
Add to the discussion