Hi @Catherine. Our son’s sound amazingly similar in their journey through this. I am interested to know what dosage your son is on daily. Mine takes 600mg per day, and I often worry as I’m not seeing others who take this much. When you’ve come this far though, it’s hard to talk to them about lowering it for fear that those damaging symptoms will start ramping up again…
My son started out on 150 mg twice a day at first with 100 mg of zoloft too because at that time it was thought he had depressive symptoms as well. He was on that for at least 5 years and then when he an developed unexplained seizure disorder resulting in two separate grand mal seizures, his doctor said it was unlikely that it was the clozapine because the percentage of seizure with that drug was less than 1% but he said my son could have been in that less than 1% group. Ultimately we rearranged the meds then and decided on 125 mg twice a day of clozapine, dropped the zoloft, and added 1000 mg depakote twice a day because the depakote has not only anti seizure ability but also mood leveling ability. that was almost 3 years ago and he has been fine ever since, no reoccurrance of the bad sz symptoms, no more seizures either and no depression.His doctor said that he had patients taking all amounts some even higher than 600 mg per day (I was worried at first that dose might not have been high enough) but he said each person is very unique and you can judge one dosage based on what works for others. I don’t think I would have even considered lowering his dosage of clozapine if he had not been doing so well for so long or if he had not had a seizure. If after several years of wellness you and his doctor think it would be prudent to attempt a slightly lower dose like -25 mg a day for maybe 4-6 months to test the waters…I don’t think overall it would be too risky but it would have to be planned out carefully by your son’s doctor and yourself and then monitored. —then if that -25 is good after six months you can stay there or reconsider trying another -25 mg reduction again but personally I probably wouldn’t change anything unless there seems to be a medical reason to do it. Just my thoughts. I am so glad to know your son is doing well though, that is really good news.
My daughter is very compliant as well for reasons your son stated - it makes the madness stop. Or at least in her case, makes it more bearable. She still has some symptoms but she says the voices have stopped which is enough for her to gleefully take the meds every day.
What a relief that is when we hear our kid say, YES I want to take my medicine!..so glad your daughter is getting some positive results.
Thanks @Catherine. Things have settled down now. No more self harm, or destroying my house. He is sociable with me now, and with his brother…only on the phone though as he lives on the opposite side of Canada. I am very hesitant to play with his meds at all, and after reading your response, it makes me feel better. We only have one medication involved and have not been on this journey as long. About 4 years now, but on the Clozaril for about a year and a half. It changed everything for him. He still isolates, spending all his time with me when I’m not working, and going to the gym with me everyday. And I mean EVERY day…for 8 months, we have not missed a day. To change the meds could change all that, and it just wouldn’t be worth it. I would rather his life be like this, rather than taking a chance with him regressing. Thanks for your input.
anytime…it’s good to hear the positive updates…thanks for sharing…
We are currently experiencing some instability, but Clozapine has worked better than anything else. I think my son has gained a tiny bit of insight on it, and I’m hoping increasing his dosage will do the trick.
Hi…How do I try to become my sons SDM? he will not go on clozapine and is treatment resistant to all other medications…
You will need to speak to his Dr to see if such a program exist in your area… I live in Ontario Canada and this has been in place since 2000…all the best.
Having the role of guardian - or decision maker - is both a blessing and a curse. You can be involved in the decision process, and accept treatment options your loved one will not. HOWEVER, you still can’t really force compliance with a treatment they don’t agree with, at least, not without some means of enforcement or inducement.
As much as my son’s doctor and I agree my son would likely do better on a higher dose of clozapine, he refuses to take it, and I really can’t force him to open his mouth and swallow a pill.
I will ask the question, no harm in asking…thank you! its good to talk to people going through the same…
I’m just waiting for my son’s next hospitalization for our opportunity to get him started on Clozaril. As SLW said, that is possibly the most effective time for some of us to get our kids started on this med.
Our son is on Invega sustenna injections, but I believe things can be better. I have to believe this.
New holes in walls today, so it definitely isnt a miracle cure.
Deep sigh on this end. Husband still hasn’t felt up to looking at the damage Jeb did.
I get that. I was kind of the opposite today - I went over there before work because I would just obsess about it until I saw what I had to deal with.
While he still hasn’t seen it, he told me that it was worth it if it helped Jeb.
I wonder if that will be what he says when he sees how extensive it is?
When you move your son, does it take a while before the damage starts?
That has been the case in the past. But it also seems that once it starts, it is very hard to stop.
Yes, once mine started, the damage just got worse and worse.
He’s currently on a six month lease - we wonder if he can make it that long without doing damage.
My son went thru a series of 6 month leases! He has been in the current place - which is mine - for … 3 years? The first year, before the pdoc decided to try clozapine, there was a lot of damage. Less since then, but it has started up again.
He has a few things he repeats - kicking or punching doors, both room doors and cabinet doors, and smashing holes in walls. Last night he destroyed 2 large framed posters in addition to the holes in the wall. Those he makes using the legs of a chair. The walls are plaster and lathe, not drywall.
In the past, he has also broken chairs, windows, several computers and phones, a few appliances including a glasstop stove, and currently, the main panel for the security system.
Most of the rooms in the house are missing the doors. I just decided he could live without them. Same for kitchen cabinet doors.
He talks about the grand places he will have - “when his dad becomes a billionaire and give him lots of money”. Nice delusion.
I am thinking about leaving off the cabinet doors that are missing and taking off the damaged doors for the -open cabinet look-
The beaten fridge will probably cause some questions for future guests. I haven’t brought anyone in for estimates to repair the sheetrock, the wiring and the fixtures. Looks like he didn’t hurt the new washer and dryer - its the second set, he damaged the first set beyond repair.
Every time I go out there I see something different broken that I hadn’t noticed yet.
To top it off, he texted me today and asked me if I had noticed how much I resembled the wife of the pair in California who had kept their kids chained to their beds! He is really convinced that we were holding him here against his will.