Informal Support for Prodromal families??

dear BPN parents 

our last 2 years have been very hard. Our  happy, well- adjusted child who grew up in a loving & happy home began experiencing signs of pychosis at age 13. 

Mental Illness runs in the family on both sides so we immediately sought treatment, found a psychologist, psychiatrist, etc.  

We've been through DBT, CBT and I reluctantly hand my child a fist full of meds each night.

We are in the "Prodromal" phase -- no psychotic break or hospitalization yet ... Hoping to avoid that! But still dealing with a suicidal child who has engaged in self harm who hears voices 24/7.

I've reached out to NAMI & other orgs but really would like to talk w other parents who worry @ their children's life chances due to early onset psychotic features & what we can do to best help our child through this period and prepare for young adulthood 

thank you

Very worried mommy 

Parent Replies

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This free weekly drop-in group in Berkeley offers a good perspective and good company. 

http://www.hearingvoicesusa.org/hvn-usa-groups-list/details/1/76-east-b…

Have you read the new research that indicates that people are actually hearing their own voice? 

http://www.slate.com/articles/health_and_science/medical_examiner/2016/…

There is also information that fish oil is preventative: 

http://articles.mercola.com/sites/articles/archive/2015/09/03/omega-3-f…

Hope this helps. 

Hi, I'm a very worried mommy too. My 14 year old son has been in residential treatment for 6 months in Utah after 3 months of 14+ hospitalizations/placements for homicidal/suicidal depression/anxiety w/psychotic features  self-harm hears voices sees violent images etc. I've found a lot of support through Willows in the Wind monthly meetings in Oakland, but feeling like I also need some support on how to survive with a severely emotionally ill child, my own feelings of loss, guilt, frightened, sad, PTSD, how to support my other family members, what the future may look like, how to financially prepare for long term care, etc.

He safe and alive at his current placement, but has not made any personal progress in learning how to cope with his symptoms. This also makes me very sad and not as hopeful about his future.

I'm hoping there's some responses.    

My best wishes to you through this struggle.

Have you heard of PREP? Its an Alameda County funded program for kids who are exactly in this prodromal stage. My son had his first psychotic episode at age 17, probably was having other symptoms earlier that we mistook for behavioral issues. PREP, based in Oakland, took him in as a client. They have therapists, support groups and medical staff who worked with him and helped him manage his symptoms better. The counselor/ therapist, a young friendly student intern, used to come home to Fremont weekly to meet my son and often took him around to the park. Unfortunately, our son had co occuring conditions that required hospitalizations and we had to pull him out of Prep. But for time he was with prep, we felt very supported.

You can google them up for the contact info. Best Wishes!!

Hang in there. You are a great Mom and are doing everything right. 

The PREP program in SF has a lot of experience with early psychosis. They offer a lot of what you are already doing but may be another good resource. 

http://prepwellness.org/why-prep-is-different/

good luck! 

Hi

idk if this is appropriate and apologize if not. First Hope in (or near) Concord.   I wish you all the best.