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Taking Another Look at Clozapine


#162

I’m starting to think that it doesn’t matter if we leave our ill children “in the dust” now or 10 years from now. We’ll get the same end result?

Even though we beg, plead, try, plan, etc. , the isolation and what comes from it will eventually happen anyways?

Should I just lower my expectations, say goodbye to hope, and move on with my life? I don’t want to go down with the ship. The ship is definitely going down.

I know that sounds terrible, but that’s where I am right now.


#163

I can only speak from my mind and heart. I know how frustrating this all is, trust me I do. If my son was “suffering” from his loneliness or his inability to maintain friendships, I would in fact move heaven and earth to make a change of some kind. He honestly appears oblivious to that component of the human experience. He gets so annoyed with me when I try to push him into a social situation or a situation where he might start a new hobby or something that provides a chance at self improvement. I am at a loss for how to inspire him to do anything beyond what he already does. He says he is “happy” he says he is “fine” he says life is “good”…he is 33, when do I take him seriously at his word? respect his wishes? When I compare our “today” with all of our own utterly horrific “yesterdays” I can believe 100% my son is absolutely fine. When I compare our “todays” with other people, other 33 year olds, other mothers of 33 year olds…etc etc…then I could fall into a very dark deep pit of despair and disappointment…so I just don’t go there.

Everyone’s reality is different as are their expectations. I do believe that I became much happier and more excepting of mine and my son’s reality when I suspended all preconceived expectations aka hopes for him and myself and tried to live in the moment, each and every moment day by day. I still strive to do my best and aim for goals day to day, but the focus (post constant emergency life) is more on improving me now…having my son live with me makes it much easier for me to do what I want and need for myself and yet always assure him I am there for him whenever he needs me and that although he claims to prefer to be alone, he has me there under the same roof with him to turn to if the time comes. I hug him every day so I hope that helps. I even started getting him massage appointments once a month, 1/ because his muscles usually feel like rocks and 2/ another means for human touch that is helpful and healing He loves those appointments so that makes me happy.

I try to think of my sz son similarly to my son that has high functioning asperger’s…their brains function differently, not run of the mill, not like average people…I think like an average person as do most of us so we have all of these preconceived notions how our lives should proceed and how different “milestones” should look in our lives…graduations, engagements, marriages, jobs and promotions, etc etc…I am just grateful my son is sane, can talk- laugh -function in basic daily ways, cares minimally about his health and hygiene, and can show affection at least to me and other family members when they are present. He collects coins and music and loves TV and movies,is conscientious about recycling even though his beliefs about it are a little skewed his heart is in the right place…he will do almost anything with me as in concerts, festivals, day trips, hockey games…in return I tolerate watching football season and reality TV for him…and I take him to the fair and the zoo when he wants to go even though I do not like either of those places…he does.

I don’t know if this is what our life will always be or if more changes are in the future, I try not to think that far ahead. I know in the past year my son has taken over dispensing his own medicine and making his own coffee, sounds small but it is not…it is big…he did not use to be able to do that…as the dosages would be all wrong and the coffee might be pure muddy sludge or look like beige water…now his dosages are perfect and his coffee is better than mine.

This week I have started having him talk to the pharmacy about refilling his meds. He was doing fine and then I noticed that the pharmacist must have misunderstood him or something and I immediately said “give me the phone” (force of habit) he said to me “mom I have it, please don’t interfere with my call” I think I was more proud of him in that moment than I would have been had he graduated high school. I think next month I am going to give him one bill to pay every month…I see a trend here. It’s never too late to learn for me or for him.

Perspective is everything. I know I have rambled a LOT, I do that sometimes. To more succinctly answer your question. Instead of ‘lowering your expectations’, suspend them. Don’t expect just experience what is now. Instead of saying good bye to hope, say hello to now, this moment, not every single moment of life is all bad. One might be bad but in the next there is a smile or a laugh or a hug or something else. And you should never stop moving on with your life although way easier said than done. Your life is as important as your loved ones and in someways even more so when they depend on you, if you are not okay they will not be okay. So it took me a long time to realize this so maybe I can help others by at least saying take care of yourself and live in the moment day by day. For every bad incident that happens try to think of one moment out of the day that was not completely awful. I am sorry you are feeling so low I would surely hug you if I could. Thanks for “listening”/reading my words. I appreciate everyone here very much.


#164

Thanks for taking the time to respond to me with such depth, experience, and knowledge.

I need to work through this grieving process, and not let it break me. I think I will want to and need to go back and reread your words many times in the future.


#165

You are very welcomed and don’t forget I also have been seeing a therapist regularly and I highly recommend that kind of support in this kind of situation for anybody. Take care.


#166

Catherine,
I admire you for being educated on all these drugs. The invega-Susten shot helped my son. he had it couple times while he was hospitalized between January 2017 and March 2017. but he refused to continue. the PDOC told him not to quit cold turkey but he would not listen did and he had bad side effects like headache and took MRI Test because he thought something wrong with his brain. the later he get suicidal.
do you known of anyone who had these side effects!
Or I am asking anyone else on this website if they have such as experience with their loved ones.


#167

More on that, He was behaving close to normal when he was on it and my brother thought this is the best medicine for him so far. after stopping it cold turkey, it took long time for Invega-sustena to clear from his system and his headache went away after several months.


#168

My son took Invega as a pill for awhile with some improvements, he did not complain of any headaches, but then he rarely complains even when there is a serious problem. After a few months with just a few improvements, (he still heard voices and had standing delusions -but not as much) his doctor recommended changing to the clozapine to try to get even better results. We agreed that he would treat my son aggressively and shoot for eradicating the worst symptoms, which ultimately he did. He always slowly titrated my son on or off of anything and said it was never a good idea to stop or start suddenly. Fortunately my son let me manage the medicines for him and in some cases like with the clozapine his doctor admitted him for 2 weeks to titrate him onto the medicine, my son never liked the hospital but he went along with it. My son’s only attempts at suicide were when he was just starting out on meds and they were giving him Geodon and Risperidol, they added zoloft for awhile and the impulse to self harm went away. Today he only takes Depakote, Clozapine and Benzotropine for the side effect of drooling at night.


#169

Catherine,
what do you mean to to titrate him onto the medicine? to check if he can tolerate it!
I just spoke to my son’s Pdoc today and she said that he still does not want to take any oral pills.
he took few days of Respiredol oral pill so they can verify that he can tolerate the shot!
they gave him the Invega-shot last week and will give him the boost by the end of this week. She said she thought about giving him Clozapine but since it does not come in Shot form, they will stick to the shots for now. I know my son is hard to comply on medicine. he worries about side effects like his sexual incompetence and growing breasts…
I am just hoping that he will get better with the shot first for few months, then they can try Clozapine, may be.


#170

Titrating just means introducing or withdrawing a medicine gradually and making adjustments as needed. I feel very blessed that my son became very compliant very quickly with the medications. He has a unique point of view about it, he use to abuse street drugs and pot, pretty much anything before he was diagnosed. Once the voices disappeared he said he felt so much better that if he had known that these prescription drugs existed before he would have skipped the street drugs and went straight for the clozapine. I hope that thought never leaves his mind. So far so good. Still I cannot discuss his illness with him he gets frustrated and demands that I not talk about it, so I don’t. I wish they could make a clozapine shot because I think it would go a long way to help a lot of people that can tolerate the shots. I don’t know your son’s age but the risperidol was only causing the breast issue in young men in their adolescence (still developing), not in adults.

The sexual component, is kind of a mute point at least with my son so far as he does nothing to try to meet anyone or maintain even friendships so kind of hard to have a girlfriend when you don’t try to be a reliable friend first. His last girlfriend was about 8 years ago and she also had sz and while she was a very sweet girl, very likable, the brief relationship ended because she was hospitalized repeatedly and too delusional to continue. I also felt that with her more ill than my son at the time, it could affect my son’s wellness. Her parents and I spoke and we decided to just go our own ways.

My son said that she was nice and missed her but he was not phased otherwise and never made any overture to try to see her again. She lived in the neighborhood.

This is another area where I try to follow his lead, if he does not complain or express anything about a lack of intimate relationship, I don’t say much, other than every week or two suggesting a social activity where he might meet someone and he always says no and I drop it. I will keep recommending something intermittently anyway. In my heart I think he is very lovable and I wish he had someone special besides me to share life with. That hope is mine though and doesn’t seem to be his. Anyway…I wish your son and you the very best.


#171

Catherine,
Yes. you are very blessed regarding medicine compliance and you are very lucky that your son listens to you. I have a long way to go to get to the level of stability that you have with your son.
Thanks for your explaining what Titrating is.

My son turned 25 last July.

I keep hearing from my son social worker that my son needs a high level of care and he said that they waiting for a hospital bed in one of State hospital in CA and that he will be transferred from County Hospital to State Hospital. He is cursing the nurses and the Doctor whenever they attempt to give him oral medicine.
I do not understand why they cannot force him to take oral meds. He is on Permanent Conservatorship status and they have a Court order. This has been the root issue with my son, he is sick and has a poor insight and non-compliant.

He got better last March /2017 in Texas state hospital after 2 months of hospitalization and he was on Invega-sustena and depokate but as soon as he came back home, he did not want to follow up and take the monthly shot and stop taking Depokate cold turkey even after his Pdoc explained to him the bad side effects after stopping the medicine cold turkey.
The same happened in August 2016, after 4 months of hospitalization and Rehabilitation, he came back home and stop the medicine and when I tried to pressure him to stay on meds, he would leave home and goes to California to hung around a family friend.

I get Guardianship May 2017 and I still could not force him on meds. I would take him to ER when he stops taking his meds then he would take his meds in front to the ER Doctor and stops as soon as we came back home. He is very manipulative.

I am hoping now that he gets better with Invega-Susten shot by itself ! not sure.
will keep praying about it.


#172

who knows, may be one day your son may meet someone who understands him and get along with her. there is always a possibility.
did you see this movie?
A Beautiful Mind (1998) is a Pulitzer prize-winning book by German author Sylvia Nasar. The book is a biography of Nobel prize-winning mathematician and economist, John Forbes Nash, Jr., and his struggle with paranoid schizophrenia. he was in love ad got married.
His son was also diagnosed with the same illness…


#173

Yes I saw that movie and I really liked it.


#174

Are there any support groups in your area? NAMI (National Alliance on Mental Illness) which also offers in some locations a free Family-to-Family class was a huge benefit for both my husband and me.


#175

Clozapine has been the miracle my family prayed for. He is back to work and seems to get better daily


#176

My grandson is back to his old self thanks to Clozapine. He did gain over 100 pounds but has now lost 70. He went back to work a year ago and he now has a social life again


#177

Hi there. This is my first time posting; I just read the threads but I want to comment on this. My son has been in 4 residential programs in the last 3 years. He is 23. He is now on Clozapine. He has worked with some very experienced and knowledgeable doctors. All sources have made it clear that 350mg is considered the lowest therapeutic dose. I think if you are getting satisfactory results on 250 mg, that is exceptional. My son is currently on 500 mg and not done yet. He has not been on it for a year yet and some of this time he has been on subtherapeutic levels. He still has very entrenched delusions, some auditory hallucinations. So far, drooling and weight gain have been the worst side effects. He is in a very monitored residential program right now that we are trying to keep him in until the medical team can determine the most effective dose for him. They are going to let him stay at 500 mg for awhile and watch and see. If he doesn’t see more improvements they will either increase the Clozapine, add on another antipsychotic, or both. I have read that anything over 60 mg significantly raises seizure risk. We are trying to take the wait and give it time approach to work as recommended by Catherine. ^. However, he has no insight and doesn’t believe he’s sick so he is tired of all these programs. We are hoping to keep him there long enough to find what works for him. I want to thank Catherine for all of your encouraging posts. I have been overcome with grief and trying to stay positive. I’m not ready to concede that he can’t get any better.


#178

People metabolize differently - the therapeutic clozapine plasma level is in the range of 250 to 350 ng/mL. When checked, my son was at 314ng/mL. Amazingly, he agreed to increase his daily dose to 300 mg, and his blood level will be rechecked this month. I have seen some improvement on the increased dose.


#179

That’s great! I wish I could say the same.


#180

It is very hard not to be discouraged at this point. I don’t want to have to increase it. He is just not responding to anything else. He is a little better but not enough to significantly improve his ability to function at a higher level. I am just hoping he will improve with time.


#181

I meant to say 600 mg.