I completely understand. I will go thru periods when things are a little better, and start feeling hopeful, and then feel like my legs get kicked out from under me.
Hi Rosie. If you don’t mind me asking, what other meds did your son try before the Clozapine?
We too are desperately hoping to find a med that’ll do something more. Right now our 21 year old son is at the maximum dose of Invega Sustenna, but he’s still so paranoid. It’s so deflating and just feels hopeless. Our son barely has a life.
In a normal world, we can just “give up” on something that’s not working out, like a job or a relationship. We can just “move on to better things”. We can’t with this illness that’s taken over our children’s brains and possibly their future. It’s our life sentence I guess.
I guess I’m having a “ legs kicked out from under me” moment.
Yes. It is crushing, crippling, debilitating, catastrophic and grim with no end in sight. My son was on Latuda, Zyprexa and Seroquel before starting on Clozapine, none of which worked. In one of the programs we had him in, he had a great psychiatrist who has experienced this firsthand. He has an adult daughter with schizophrenia. This made him particularly sensitive and knowledgeable about treating schizophrenia. Also, when Clozapine was in its trial stage before FDA approval, this doctor was one of the doctors who worked with patients at one of the trial test sites. So he has been working with it a long time. He told us that his goal for our son was 500 mg from the get go. I gained a lot of respect for this doctor and that gave me a lot of hope with this medication. So now he is up to 500 mg and we are waiting to see if and how much he can improve. If we don’t see some improvement soon, I don’t know what we will do. They will either increase it or add another AP on top of it. I don’t know. I am at my wit’s end trying to get him help.
All of your adjectives to describe this experience are accurate, but I’ll add heartbreaking.
I’m so glad you have a Psych doc that really understands this illness, from actual personal experience. You know he’s invested. He gets the importance of being aggressive.
I imagine/hope we’ll be starting Clozapine on the next hospitalization.
Clozapine changed my grandsons life. He is on 450mg and 25 Lamictal. He is back to work actually holding two jobs and wants to move out with a friend. Its been a miracle but He did gain over 100 pounds but has now lost 70. He is making friends again. Like I said it’s been a miracle
I so love to hear these success stories! Glad your Grandson is doing so well!
I hope it works it’s my understanding they can go up to 950mg. Has to do with his therapeutic level in his blood work. Also if he smokes that gets rid of the Clozapine try to get him to vape if he smokes. Good luck. I also heard Saphris is showing some progress