Hi John,
Thank you for replying so quickly. I have joined NAMI and went to Family to Family about 7 years ago. Then I became a facilitator through Indianapolis but the group I joined was not recognized for some reason and it got political. We have not met since Covid.
I am so happy that your son was able to find his way. Thankfully for my son, he has tremendous family support and a lot of love. Without his brothers, this once popular athlete would have no friends. They all abandoned him in high school bc of his behavior.
Unfortunately, the negative symptoms are most prominent in my son, and his illogical thinking keeps him from sustaining a job. Now with his mannerisms increasing, he is getting stranger. I wonder if the mannerisms are precipitated by boredom? It’s so hard to see him circling the house every day with nothing to do. I try to take him places and he likes to go out with his brothers.
Honestly, we have yet to find a doctor that really cares. The U of Chicago doctor did not warn me about how much clozaril we would have to achieve for therapeutic effect. He landed in the hospital after trying to kill my husband. U of C has no inpatient for mental illness, so he spent 7 weeks at Regional. His doctor never followed up. We moved to St. Catherine hospital with a doctor he likes who did both in and outpatient, but he rarely kept appointments being stretched so thin. He was fired. Now we have a nurse practitioner and I find myself checking his clozapine levels through my chart. I am his advocate. By law, blood tests must be taken but the doctors are too busy to check if the levels are too high or too low. A month ago, after adding another med, his levels were double the highest range. I alerted the doctor. Shouldn’t this be the other way around? I seek better care for him. I know he could be on a better place for his normal. I just can’t find a doctor with the experience, time and concern for him. If you know of anyone, I am all ears.