Good news, bad news:(
I think you are right to be concerned. One of the stats regarding lightening of symptoms at a later age, also reflects an uptick in depression for the same reasons you are concerned.
Gosh this is a tricky business.
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@hope - how I wish he came with a few dials & knobs so I could turn this up & that down, at just the right pace ā¦
I bet a few doctors wished that too, and how he would hate it if he knew I ever thought that kind of thing.
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First I think it is good that he is becoming more aware of his delusions and what is true or not, or at least questioning it. You might need to discuss possible depression with his doctor if you think that applies. My son had some depression in the beginning when he was still new to the clozapine, his doctor put him on zoloft and he stayed on that for a couple of years until he and I both questioned why he was still taking it since so many factors that were present when he started taking the zoloft were no longer applicable 2 years later-- so his doctor weaned him off of it and he has been fine ever since. I am still full of so much hope that this is all part of the healing process for your son and he will inevitable get better with each passing month, still ups and downs I imagine as I had with my son but overall a steady (slow) improvement. I am sending you a sincere hug right now hope you can feel it. 
Thanks Catherine,
My son has had depression in the past. Heās been on Zoloft, Prozac, Lexapro, and a few others.
His diagnosis was psychotic depression for a long time.
And, I think this latest bout of psychosis was kicked off by a deep depression. I think he was so worried about getting older & not having done enough with his life, that he created this whole dreamworld filled with grandiose delusions.
Heās felt suicidal in the past, but he would describe it as feeling so depressed that he might as well be dead.
Heās never had a plan or put together means to carry it out, but would just say that it was too much effort to do.
And, we would kind of joke that his laziness/lack of motivation was keeping him alive.
They tried Trintellix with him a couple times in the past year. Sometimes, I felt like it was doing something, so itās hard to ssay.
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He must have reset a little bit overnight, so no more questioning today and no drop in mood, so thatās good.
Iāll just wait for more moments of clarity
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Big hugs Slw, I understand your concern. My son is extremely quiet right now and that has me concerned. He is still in the hospital but likely to be released next week.
Reassuring him and hopefully our love will see them through. You are such a great mom.
I think all the momās here are great.
By quiet, do you mean not calling you as much? or not talking to you much when you go to visit?
I think my son would get quieter in the hospital as the meds started to work & the inner noise started to get quiet.
Sometimes, I think he was just exhausted & sleeping more. Other times, he had made friends and was otherwise entertained.
I worry no matter what. I had a few times when he went from ringing my phone every 10 minutes to not calling me until late afternoon that I called the nurses station just to make sure he was OK. Theyād offer to get him to call me back, but Iād always tell them heād call me when he was ready. I just wanted to make sure nothing was wrong.
And, he would cut visits short as he had less urgency to talk about his delusions. Heās be tired, or just tired of talking. I always left when he would say I could go if I wanted, after reassuring him Iād stay as long as he wanted me to.
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Thanks Slw, both not calling and when Iām there. At least they kept him long enough to stabilize him, right? Like many here, Iām trying to figure out our next best thing. Home is the only place he wants to go for now. I hope I can get him into some activities heāll enjoy and be able to look forward too. God bless you guys too!
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Question, not that I will have all that much say in the matter.
My sons been on 200 mg/day, split between 2 doses for 3 weeks now, so about 5 weeks total including them bringing him up to 150 mg/day before he came home from the hospital.
He seems very even, no major side effects, he is delusional but only has pleasant delusions & he had one day where he was questioning them (2 days ago.)
He wasnāt sleeping too much at first, but now heās sleeping close to 12 hours a day.
Heāll see the doctor again in a couple weeks & Iāll let her know how heās doing beforehand, but if heās still sleeping like that, would you guys think it would be a good idea to delay the next step up? Or, did they go up with your family member regardless?
I know some people do OK with less than the minimum 300 mg/day therapeutic dose, but most people need more.
It wonāt be up to me anyway, but it would be nice to know other peopleās thoughts & experiences.
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My son, as you know, has been slowly moved up to 600 mg since starting clozapine in May of 2016. He has always slept a lot on this med since starting. He takes all of his meds at 9 pm, then falls asleep around 10-10:30 and easily sleeps till noon. Sometimes later. Itās never changed for him. I know it isnāt ideal for a normal life and I hate to admit it, but sometimes I am so grateful for that because it gives me time on my own where I donāt have to worry. We get so little āusā time.
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Everything seems on target from what you are describing, much like I recall with my son, not that they are the same, but the pattern of improvement seems similar, and the 12 hours a day sleeping will gradually improve and normalize in a few months or longer, I would go ahead and follow the doctorās lead so long as you are keeping him or her aware of all of the things you are seeing with your son, and I know you are, You want to be able to see the full effects that the therapeutic dose can provide for your son before deciding less is better. My son was on 300 for about 5 years before the doctor felt it was worth the risk to reduce to 250 for the sake of utilizing less medicine and seeing if he would be able to maintain wellness at a lower doseā¦fortunately he tolerated it well and remains now on 250. I am so happy things are improving for your son, I truly am.
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Thanks to both of you for sharing.
Itās like Iām not happy if heās not sleeping - then Iām not happy that heās sleeping too much.
He doesnāt sleep steady - heāll get up & eat or have a cigarette, then start watching TV & drift back off to sleep.
I really didnāt expect him to sleep this much on such a low dosage, but maybe this is the first med heās had that worked completely. He always told me that the Zyprexa didnāt fix everything, but he never wanted to talk about what that meant.
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Slw:
I can only imagine the tremendous amount of work (time and effort) it takes to use this med, and Iām so happy that it is starting to work for your boy. I know it sounds terrible after all youāve been through, but I canāt help but to feel a sense of jealousy that my boy isnāt there yet. I expect weāll be there some day. Hopefully sooner than later.
No worries - I get jealous all the time.
Of people who have family members who have insight, or are more cooperative, or are more social.
I get jealous of all the attention that autism gets.
And, I get jealous that people with mentally retarded children have kids that, for the most part, seem so happy.
I also get jealous of all the people I know that drank, and did drugs, or neglected their kids - but their kids are still pretty well adjusted and living their lives.
I know itās not fair to compare my familyās struggles with anyone elses, but I think itās human nature to feel that way so I donāt worry about it too much. I love my son & wouldnāt trade him for anything, but I canāt help but feel like we all got a bum rap that we didnāt deserve.
EDIT: I did want to add that I was pretty scared about this med to start, but it really hasnāt been that much work. I make an appt with the lab every Wed. afternoon (itās almost always empty at that time), weāre in & out in about 10 minutes, sometimes less. I treat him to Starbucks or whatever he wants on the way home. He hasnāt made a single complaint.
The lab faxes the bloodwork resutls to the doctor & the pharmacy - I pick up his meds once a week.
I give him his meds twice a day - sometimes I have to wake him up. He grumbles a little bit sometimes or gives me āthe lookā, but he takes them even if he tells me they donāt work, he doesnāt need them or heās just taking them to make me happy.
The only struggle was adjusting his cigarette intake, but I got him to switch to American Spirits in the Blue pack, so Lights? Iām not sure if the drop in additional chemicals cut back on his cravings or if heās just sleeping too much to smoke, but heās way down from his 2 to 2.5 pack a day habit with the cheapo cigarettes. I give him a pack a day & he fills in with his e-cig. Most days, he has a few cigarettes left over. Thatās a huge improvement.
Heās also not craving alcohol anymore. It dropped pretty quickly & I donāt think heās anything to drink at all for the past 2 days. Not that I expect him to never drink again, but itās nice that Iām not so worried about him adding alcoholic to his list of labels.
Iād definitely recommend the Clozapine at this point if youāve had less than good results with several other drugs.
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As far as the sleeping goes, I also believe that through all the psychosis that they go through, the constant pacing, lack of sleep and constant brain activity, if their bodies and brains are literally exhausted by the time that the meds help them slow down. So, could be a mix of that and the meds that make them sleep.
@Day-by-Day, the jealousy is probably common among all of us. I feel it constantly, the same way that @slw described. Also with healthy families that just seem to have everything that we expected for our family. I thought it would go away but it hasnāt. Fortunately I donāt have too much time to dwell on it or it would eat me up. None of this is fair!!!
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My ex has Sz, and I have MS (multiple sclerosis). When I was diagnosed and feeling āwhy me?,ā my aunt gave me some words of wisdom: Everyone hits some bumps in the road, some havenāt hit theirās yet.
In other words, all families have problems. Donāt be envious of those who seem to have a better life.Chances are they are facing their own trials, or will in the future.
Hope this helps!
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Totally agreeā¦and believe this most of the time. But oh those feelings are sneaky and pop up when I donāt need them. I am fortunate and can pull myself out of it. Human nature. Thank you, and yes it does help. Always need reminding
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One thing that I have always heard from a variety of doctors is that āsleep healsā I believe this wholeheartedly, whether it is a physical illness or a mental illness, healing happens during sleep. The irregular sleep will eventually stabilize but it takes a long while. For the first year and much of the second year there were times my son might sleep 17 hours, and times when he would get up at 3 or 4 in the morning and smoke or eat or just sit. I often worried and fretted over it. His doctor would say so long as his behavior is not adversely affecting his (or my) health or safety, just flow with it. I know what it feels like to be āmicro awareā of every nuance of my sonās behaviors minute by minute. The more well your son gets the more you will be able to focus yourself and on recovering from helping your son recover, I highly recommend personal therapy to all caretakers who are willing and able to partake in it-- it has helped me tremendously.
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Catherine, that is excellent advice. Have you taken your trip with your friend yet? Have a great weekend.
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