I found this recent article, and the book referred to below, to be very helpful. There are several other threads on this Forum, also, that discuss personal experiences with Clozapine.
Clozapine saved my grandsons life
saved my own son’s life as well
My 22 yr old son lives with me and he was diagnosed with Sz the summer after he graduated high school when he was hospitalized involuntarily for 10 days. At first he responded so well to his medicine I thought they must have mis-diagnosed him. He went down hill again last August and hardly left his room. He got very depressed and his psychosis increased and he had to be hospitalized again. He is now diagnosed with sca. They switched his medicine to Latuda which helped his depression, but did nothing for his psychosis. His communication was very delayed, and he barely spoke. He had the stare and mask face. He also had that compulsive laughter for no apparent reason. I asked him about it and he said he was in a room hanging out with people and they were entertaining him.
About a month ago I found this site. This is my first time posting here or on any forum. I have learned so much from all the posts I’ve read and appreciate the advice that’s given. I too have missed my son terribly even though I see him everyday.
About the same time my son’s doctor recommended changing his AP again from Latuda to Clozapine. He said it is the Gold Standard of AP, and he wouldn’t be doing his job if he didn’t recommend it. At first I was fearful of the weekly blood draws, potential side effects and my son didn’t want to switch.
However, based on recommendations from people on this site I did my research and read the book Meaningful Recovery From Sz and Serious Mental Illness with Clozapine. Also Surviving Schizophrenia and Dr. Amador’s book I’m not sick…
After that we decided it was worth a try. His quality of life was so poor, and I didn’t want to give up on him if there was a chance he could be better. He has also been taking Lithium for mania and it is known to increase the Neutrophil counts in wbc. He had to have an EKG and baseline wbc level tested before he could start. His level was 7,000 and they should be at least at 1500. This was good news.
He has now been on Clozapine for 12 days. Everyone responds differently, but we saw an immediate improvement. I’ve been reluctant to talk about how well he is doing because it is early…however the improvement is remarkable enough I thought I should share our experience with Clozapine in case anyone is on the fence the way I was.
Here’s a list of changes in him so far:
-Has gone to see his dad and grandparents every day
-Makes his bed and straightens his room when he wakes up
-Did his laundry and washed his bedding
-Responds to questions without delay
-Talks about reaching out to his old friends again
-Went to a restaurant with me for lunch today
-Ran an errand for me today
-Visited my grandmother with me at assisted living
-Asks for his medicine and says it makes him feel better than the others did. Told me he feels like the paths around him have been cleared and his thoughts aren’t blocked anymore.
-Sleeps through the night
-Cares about his appearance
-Acts like himself again
Fortunately his doctor is very experienced with Clozapine. He has many patients who are taking it that either work or are in school. He registered my son in the REMS Program which tracks his weekly blood draw and is sent to the pharmacy. They review his levels first and if good delivers a one week supply of Clozapine every Friday.
He started at 12.5 mg and it has increased every few days to 200 mg the last couple of nights. I also give him Vitamin D, B Complex, Magnesium and Omega 3 Fish Oil daily. He requests his medicine by 7pm and he admits it knocks him out. He says if he wakes up in the middle of the night he falls back to sleep before he rolls over from one side to the other lol. He woke up at 7:30am today, and we enjoyed a nice day together .
@DayByDay I agree that it is early but it just makes my heart burst in joy to read of the dramatic change for your son (and you)!! Keep us posted on your journey!
My son continues to do well on Clozapine now 16 months, but it has been slow and steady. As he is applying for jobs (interviews but no hire yet) and we are discussing helping him out with a vehicle (he has not driven, really, in 2.5 years) and expecting a move eventually from his current group home (apartment) to a REAL apartment, he recently told me two things that are huge for us: (1) He would take his med “of course”, and see the doctor and go do his blood draws and (2) that he had shared “his story” (the long version) with a RN in his small group at the church he attends. It is still hard for him to talk about his journey, but he has come a long way and we are just so incredibly grateful for what we have today and hope for the future.
@hope4us Thank you! It’s success stories like your son’s that convinced us to try Clozapine. I’m so happy to hear your son is still doing well, looking for a job and hoping to move out on his own. It’s also great that he participates in a church group and shared his story! Does he like living in the group home?
What about side effects? My son vomited a few times yesterday, which I believe can be common in the beginning. I was worried, but he brushed it off like it was no big deal. Otherwise it was a good day. He still went out to lunch with his counselors (they pick him up every Thurs), visited his father and was in a good mood when I came home from work. He seemed completely fine. He also slept through the night with no issues. Did your son have any nausea?
My son DOES like his current private group home environment. I don’t think he would have had this success in his recovery anywhere else. I can tell you that it is very expensive but I have heard of success stories for persons in government-provided settings, also. However, I can’t continue the financial drain long-term and I also think he Is ready and will benefit from being in a more “normal “ environment. I wish there was a better way to transition. But at least he will still be able to come back and visit a couple of friends he has made there. And this is just talk right now. Our hope for the future.
Our son had drooling at first on Clozapine. He was close to being underweight and gained weight simultaneous with starting this med, but leveled out at a very healthy weight. He goes to a gym several times a week and he walks a llot. He takes 100 mg in the a.m. and 300 mg at night. It makes him hungry so I think he takes it right before he goes to bed. And I wonder (based on observation) if it causes him to need to urinate more frequently, although he has never complained of that.
@hope4us Thank you for the info. I asked because his doctor has recommended a group home to help him learn to be more independent. I’m also guilty of over mothering him sometimes. He had a job last Spring, but quit after a few months. Clozapine is definitely helping, but he has a long way to go.
I mentioned he was sick, but it was for one day only. It could have been a virus or related to going off his other AP. Either way he is fine now. He increased to 250mg this week and will go to 300mg next week. He started off thin and gained weight on Latuda. But, he is still at a healthy weight. He used to be very active, and we are hoping he will be again as he feels better. Right now he is only taking it at bedtime, and so far no drooling. Feels selfish to say, but my husband and I are thrilled that he is sleeping through the night now. He used to compulsively take at least five showers a day at all hours, sometimes within a 30 minute time span. He said the hot water helped him feel better. The bathroom is next to my bedroom, and I would wake up as soon as the shower turned on. He stopped this after starting Clozapine.
My big hope for now is that he will finally attend group, and take more responsibility for his recovery. He’s also been lonely for a long time, so I hope he finds at least one good friend.
I can only imagine how expensive the private care has been for you. Maybe it’s just talk right now, but I think it’s great your son is at a point where you both believe transitioning out is a possibility for the near future. It’s also nice your son is active and has made friends. I hope things continue to improve for him.
Thank you so much @DayByDay! I have learned that persons with SMI recover in different ways…that there is not one perfect or right way. I had thought a residential treatment program was going to be “right” for us but it turned out that the environment of shared living in this group home (and requirement for medication compliance) was what worked for him so far without all the extensive classes and programs. He does talk to a counselor there, also. The Director there BELIEVED that they could get him through some challenging times, and they did! And “recovery” looks different for each person.
We can all encourage each other in our positive moments and success stories and empathize when things aren’t going so well, too. And we CAN have hope for a better future! I pray things continue to go well with your son!
It occurred to me to explain why our son does not live at home. In some ways, I wish he would, but he had been living independently since he went to college and he told me not long ago that our home reminds him of when he was here and really, really sick and that is hard for him. He desires to be independent so this is what we have chosen to do because we believe it is best for him.
@hope4us Thank you for your kind words of encouragement and prayers. I truly appreciate them. I completely understand your son’s desire to maintain some level of independence, and it’s wonderful that it has worked for him. It might be difficult for you, emotionally and financially, but he’s blessed to have your love and support. I will pray your unspoken concerns are taken care of.
I am grateful for the hope we have right now, and strengthened by faith to deal with challenges as they come.
Currently my worries are for my 95 yr old grandmother who went into the hospital a couple days ago. She still has a vibrant mind and amazing memory, but is weakened from the flu. Hopefully her stubborn will will help her to recover from this illness.
“our home reminds him of when he was here and really, really sick and that is hard for him.”
Yes my son does not want to come home and tells me the same reason that it reminds him of those times and that acts as a trigger for his symptoms. It hurts me. He used to crave to stay at home and now he does not even want to visit. Everytime I used to go visit him at a treatment facility or group home, he would ask me “mom will you keep me at home after this” and now he does not even want to visit.
@pally I would try to look at this as a very good sign and not to take it personally. It’s like an alcoholic who can’t go around the old neighborhood where they drank while they are healing/recovering and getting sober due to the triggers they feel. Once they get strong enough in there recovery those places don’t have the power over them as much. I’d give him time and try to find new ways to visit with him.
Ot saved my grandsons life. He works fulltime and just moved out