[costello]

My son saw his pdoc yesterday. He lowered the dosage again - from 20 mg to 15 mg. I'm really happy about it, but I'm also anxious.

My son came out of the hospital in late March taking 35 mg of Zyprexa - 5 mg in the morning and 30 in the evening. He and I dropped the morning dose pretty quickly, because it seemed to be making him a zombie. The new pdoc has lowered the dosage 5 mg a month for three months now. At first it was a case of the amount of sleep my son was getting. He was sleeping 11 and 12 hours a night, and still tired when he was awake, taking naps lots of days.

Now he's sleeping a normal number of hours, but he's gaining weight. At first he needed to put some weight on, but recently he's gone past where he needs to be IMO. He gained 10 pounds in the 28 days between his last two pdoc appts - from 151 to 161. At 5'8" he's still "normal" weight, but the tummy he's getting is pretty obvious. Hopefully this decrease in dosage will slow or stop the weight gain. And hopefully he won't have any set backs as far as psychosis.

I'm asking for prayers and positive thoughts as my son continues lower his dosage and tries to get his life back on track.

Thanks.

[mgran]

I will pray... I'm glad that your son's pdoc is being supportive about lowering the dosage in such a responsible way.

[costello]

My son saw his pdoc tonight. He lowered the dosage again - to 10 mg!

[mgran]

Yay! That's great news. What's happening with the weight gain? Did it taper off?

Tell your son well done from the UK.

[costello]

Originally Posted by mgran

Yay! That's great news. What's happening with the weight gain? Did it taper off?

The weight thing has been a bit worrying. He hasn't had the huge gain that a lot of people have with Zyprexa, but it still worries me a bit. Last month when the doctor dropped the dosage, his weight plummeted from 161 to 155 within a week, then it started crawling back up to the low 160's. I know that doesn't sound like a lot, but he's not a particularly tall guy - 5'8". Also it all goes right to his tummy. He's getting a bit of a paunch. I had to sew the button back on three of his jeans this past month.

Hopefully it will drop again. His normal weight is 146 to 148.

Tell your son well done from the UK.

He noticed I'd posted the lowered dosage last night, and I told him everyone on the forum is pulling for him.

[KUREHA]

I hope it goes well then

[costello]

My son saw his pdoc again yesterday morning. He lowered the dosage again - to 7.5 mg. He told my son he's "doing something right."

I'm feeling pretty good about the whole thing. We had one episode that worried me shortly after we lowered the dosage last time. He got pretty angry with me. It wasn't the anger that worried me so much as that he got very suspicious of me as well. He was able to hold it together and work through it, though.

He's saying now that he wants to stay on a low dose (5 mg) of Zyprexa. Of course he's said things like that before then suddenly discontinued the meds.

[mgran]

It sounds to me like your son is working really well with his pdoc... I'm impressed!

[costello]

Originally Posted by mgran

It sounds to me like your son is working really well with his pdoc... I'm impressed!

He is. He's doing really well right now. And still I worry.

I think he's doing well, because he lives with me and therefore he 1) sleeps at night, 2) eats regular meals, 3) doesn't abuse drugs or alcohol, and 4) takes his med every night as prescribed. In short he leads a pretty clean life. I seriously doubt he would keep up with all that if he were on his own.

Maybe I'm wrong. Maybe he's more mature now and understands he has to keep himself on a even keel, but I fear otherwise. I think he thinks I'm dull and stodgy with my lights-out-go-to-sleep and eat-less-sugar-and-more-protein rules.

[Janine180]

Your son is fortunate to have a PDoc who is willing to lower dose. Diet (nutrition) and exercise are very important for wellness.

[mgran]

I was talking to someone today, who's oldest child is in her fifties. He confided in me that when she visits he still sometimes wakes up in the night, worried, and stands outside her room to hear if she's breathing. He tells me he feels ridiculous, she's a parent herself, she's perfectly healthy... but he remembers when she was a sickly baby and they thought they were going to loose her.

It really got to me, because some nights I stand outside my son's room to make sure he's okay. I think as parents we'll always be on duty as far as our kids are concerned.

One day I think he'll have to stand on his own, but right now he's blessed to have you looking after him. He might think it's boring, but you're giving him the space, time and support to stabilise, and one day i do think, from the sound of it, that he'll have internalised those life skills. Perhaps he'll be lucky again, not just with his mother, but to find a partner who would give him confidence and peace of mind. In the mean time, I can't think of a single thing you could do for him better than you're already doing. I mean, if my son were in your son's position, I'd really aspire to be like you... you'd be my role model. Your son is still young, I think he'll continue to do well, and one day will be able to fly the nest and be safe. He mightn't even be alone when he does it.

[costello]

Originally Posted by Janine180

Your son is fortunate to have a PDoc who is willing to lower dose. Diet (nutrition) and exercise are very important for wellness.

Yes. I shopped around to find a supportive pdoc. This pdoc and therapist are the most respectful mental health people we've encountered. The pdoc insists that my son have psychotherapy in conjunction with the medication. He even told him yesterday that the important stuff isn't the meds, it's the work he's doing with the therapist that matters most.

The pdoc had my son read The Depression Cure by Dr. Ilardi. Ilardi advocates sunlight, exercise, fish oil, not ruminating, etc. for good mental health. My son does take the fish oil, and he works really, really, really hard on not ruminating. He isn't getting the exercise and sunlight consistently though.

Ah well, progress not perfection.

[costello]

Thank you, mgran. It's hard to know sometimes what's the best thing to do. One of the visualizations I have in my mind is of my son resting on my open palm. It's so tempting to close my hand around him and "keep him safe." He complains sometimes that I'm too controlling, and it's hard to resist that urge to control. So I picture him resting there getting stronger.

Sometimes he rebels and insists he's going to do things his way. The impulse is to clamp down when that happens. I have to fight myself to allow him to make his own decisions and get his feet back under him again. It's very much like having a younger child in that you have to know as a parent when to let go and when to put your hand out to steady him. Pull the support away too soon and he falls. Hold on too long and he never grows.

[costello]

My son saw his pdoc on Wednesday and he surprised him by lowering the dosage again. At the last visit the pdoc had been pretty adamant that he would be leaving the dosage at 7.5 mg for at least one more month, but he went ahead and lowered it to 5 mg. He says my son is doing well, but the Zyprexa is making him "wooden."

I suspect that quitting cigarettes has raised the effective dosage of the Zyprexa. Apparently smoking can cause the body to clear the antipsychotic faster. So you'd need a higher dose to get the same effect if you smoke. When he quit smoking the amount he needed went down.

So, good news as far as I'm concerned.

My son says he'd like to stay at 5 mg for the indefinite future. I'm not sure if he wants to do that because he sees the benefits fo the med right now or if he's trying to please someone else - his therapist? But for now that's what he wants.

I'd like to see him on the lowest possible dose because I think sooner or later he's going to quit. I'd rather he cold turkey on a very, very low dose. Better to fall off a footstool than a mountain!

[KUREHA]

It's best to stop medication - I stopped mine last week - since they just keep lying to me.

It's just gave to make people believe they are ill and that they need it - just to be more 'normal' and to stop made up symptoms that wouldn't happen in the first place it the government would stop testing.

[costello]

Originally Posted by KUREHA

It's best to stop medication - I stopped mine last week - since they just keep lying to me.

I'm not a big fan of the meds either, but he used to do what you're doing - start and stop, or take them hit and miss - and it just made things worse. I think he's doing it the right way this time. Slowly reduce the dosage over time, taking them every night as prescribed while he's lowering it. The irregular usage just creates its own problems.

The incredible thing is that he's now taking 1/7 of the dosage he was taking - and doing much better. He came out of the state hospital in March taking 35 mg daily. Now he's taking 5 mg. I'm sure that if we were still going to the county mental health center, they'd still be prescribing the 35 mg, and he would have quit taking the meds a long time ago because the side effects would have been through the roof.

This private psychiatrist and therapist are doing so much better for him. They listen to him. They treat him with respect. He has a genuine voice in his treatment. They don't just use constant force like the mhc did.

The forced treatment just doesn't work. It makes him run away to avoid the coercion. It makes his paranoia go through the roof. He doesn't feel like he can trust anyone in his family or on his treatment team, because everyone is conspiring to get him to take meds that make him miserable. So he ends up turning to strangers for help, and some of those strangers are bad people.

I tried to explain this to the idiots at the mhc, but they wouldn't listen.

[KUREHA]

Well I got to my year as well as not needing them - so I stopped, my nurse said I only needed to take it for a year and I'm sure all the months must add up to a year.

That's great that he is doing really well and taking just a small amount, I think a good psychiatrist and therapist helps a lot as well.

Mine joined with the sleeper cells and my nurse wants me to see him since I stopped.

I'm glad he sees someone better now.