In the very beginning when my son was the sickest, the first few doctors my son saw would literally shake their heads and then try to timidly suggest I commit him to institution of some sort. He was unable to communicate and had wild delusions and was out of control with self destructive behaviors…I was like you in the since that I did not believe any of them. I always knew my son could be better than he was…and I am so glad I stuck to my guns on it…I had just one doctor initially that believed as I did and he was the one that eventually got him on the clozapine…then later a new doctor took his place and he was also good in different ways and he helped tweak the dosages so they worked even better. Now that my son has been stable for a good while this new doctor he has now (seems doctors here are always coming and going) she seems to believe my son is ‘as good as he will ever be’ and does not take any discussion of reducing negative effects (lethargy, lack of motivation etc) very seriously at all. I am searching for a more forward thinking psychiatrist that can continue to help my son improve even though he is already light years better than he was. Potential is something that you are never quite sure you have reached as much of it as you can so why not keep trying? right? Stick to your guns mom you know your son better than anybody! 
I really dislike being told ‘this is your son’s baseline’. I think some psychiatrists too quickly say, this is as good as it gets.
My son had his 3 month check in yesterday. He lost another 16 lbs from the massive gain he had done on Invega and then Consta. His overall outlook has improved. I have seen him make some progress recently in social interactions. It may be slow, but I sense a change for the better the longer he is on clozapine.
This was the only medication that worked for my grandson. He has been on it for two years. He has gained a lot of weight and has a lot of saliva but it’s nice to know the voices are not torturing him as much
@lindag - how is your grandson?
You mentioned the voices are not torturing him as much, but how are any other symptoms such as delusions?
And, how is insight both before & after the clozapine.
They’ve mentioned clozapine for my son if the Invega injections do not work, but we have seen some improvement.
It makes me wonder if he would see more improvement on clozapine, but the change scares me.
I’m scared we’ll lose what little he’s gained, or that he won’t gain any more - or that we won’t be able to get him back on the injections if the clozapine doesn’t work for him. He has no insight right now, even though other symptoms are better, but the biggest thing is he has major compliance issues & has refused oral medications in the past.
This entire thread is invaluable to my husband and I. Our son has been on many different medications with little help so we’re praying that this will be a great change for him. I get the side effects and I read the entire thread. We control the money too and we’ll have to add a few more incentives but we’re going for it. Now to convince him. My husband has driven our son and dropped him off at homeless shelters (he never gets out of the car of course) and the police station. It’s so difficult to get through to an adult who is struggling and doesn’t know how pronounced his symptoms are.
I pray my son will get your son’t benefits; thank you again Catherine. Hugs.
I’ve been looking for this thread - so glad someone else posted so I found it.
They started my son on Clozapine last Saturday. He’s up to 50 mg in the morning & 50 at night.
They’ll continue to go up 25 mg a day until they get it to where ever they think he should be.
I don’t know for sure, but I get the idea they’ll let him come home before they’re finished & let the outpatient doctor continue, which worries me. She seems very set on not overmedicating him, which is good, but I worry she won’t go to a therapeutic dose.
I was surprised my son’s pdoc stopped at 250 mg / day. But it has worked better than anything else.
My son has a history of needing high dosages.
Did your son need the same thing?
He’s still a little paranoid that someone in there will hurt him. Not someone specific, just that a fight could break out or someone would randomly punch him. To be fair, he was randomly punched once when were at an amusement park & let the boys go off to ride something by themselves. Some older boy just came up & punched him in the face & he has a little scar from the cut on his face to this day.
And, he has his regular delusions still, which is to be expected.
He does seem to be resting better, but they’re also giving him Neurontin, Trileptal & Trazadone, all should make him sleep once they got the racing thoughts somewhat under control.
I can’t tell that he’s hearing anything - he doesn’t seem distracted & he’s not laughing to himself.
He does look a little flat - until he gets aggravated at me about something & starts to mock me sarcastically.
It’s no wonder his aggravation threshold is low - no cigarettes for a week & he’s stopped wearing his patch so that the first one when he comes out is extra good.
@slw
I just found out there are people who metabolize medicine really quickly. It’s a genetic difference and can be found with a DNA test; I’m not sure which one.
@Hereandhere - I’ll definitely check into it.
If his psych team won’t listen to me, our family doctor is on board to find out any physical differences we need to find out about.
Thank you so much for that - I bet my son is a fast metabolizer, then he smokes which just makes you metabolize it faster.
He called to tell me the doctor said he can come home tomorrow, so getting ready to call & see what the plan is to titrate him up more.
My grandson has done very well and is working part time
Hi I am new to this page, i have been caring for my 32 year old son since he was diagnosed with schizoprenia at 15. Weve had lots of ups and downs over the years. He has been stable for over 10 years now, taking colozapine and depo injections monthly. But once or twice a week he loses touch with reality and wanders about with glazed eyes, has trouble talking or doing anything. This usually happens in the afternoon. But for the first time its gone two days in a row from morning to night. The doctors cant explain whats going on. We found out that many schizophrenics have trouble digesting dairy, which ferments in the gut instead creating an opiate like substance which can cause hallucinations. So we took him off dairy with a dramatic improvement . Although he is still having these times where he loses touch, they are no where near as dramatic. I just wonder if anyone else has had the same problem. I will contact his doctor if he does not improve today. Thank God I found this group, its hard going caring for someone like this, sometimes I feel guilty for wishing I could have a day off.
Welcome to the group Mum1961! I haven’t noticed anything with the dairy myself, but this will make me start to pay attention when he does have some. My son is on a high dose of clozapine and does have ups and downs but I think a lot is due to the continued pot usage. Guilt about wanting a day off is a common thread you will see with a lot of us, but depending on our situations, it is imperative that we get a little time at least in for ourselves so that we can continue to be their for our loved ones. Take care of you when you can!
Welcome Mum1961 - don’t feel guilty and do take a day off. Congrats on 10 years of stability!
Update… Clozapine is working at 400mg…he is beginning to have insight…blood work no problem… side effects limited…we are six months in…this drug takes time so patience is needed…long hard uphill battle and hope is what keeps us going…I still med monitor him every evening as he forgets to take his meds…if he gets his meds daily the rest follows…hopefully over the next six months brings more improvements…
My son is at 250. I would really like the doctor to try increasing the dose, as my son still suffers from psychosis and paranoia, even tho it is much less.
Is your son still also on the depot?
No once he started clozapine the depot was stopped, never worked for him anyways…
Wasn’t a solution for my son either. Some of them made him worse, and some caused serious weight gain.
so very happy for your results and good news…hoping it all continues to improve, and yes, patience is the key word, I know from experience…thanks for the update…