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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 9 of 9. This is the beginning of the thread.
Posted by wamazon on November 22, 2008, at 21:20:05
Help!
I am a foster mom to a non-verbal young man diagnosed with autism/severe retardation/bi-polar
whom has been on invega for almost one year. I think this medication is doing him more harm than good. He has rapid cycling episodes of happiness then agitation/aggression which are almost as intense as what he exhibited when experiencing withdrawals after being suddenly pulled off of zyprexa due to liver complications in Dec'07. If anyone has experienced invega for the good or bad and its side effects, can you please share with a very sad and frustrated care-giver.
Thank you.
Posted by Racer on November 23, 2008, at 23:32:14
In reply to invega, posted by wamazon on November 22, 2008, at 21:20:05
Welcome to PsychoBabble!
Your situation must be terribly stressful for you, and I hope you find a lot of good support here, as well as information about medications. What you're describing does not sound to me like the picture I'd expect with effective treatment -- even in such a challenging patient. It sounds as though a medication change is probably in order.
The Medications board here would be a great source of information for you. I haven't heard much about Invega, but I'm sure someone on Medications knows something helpful. I believe at least one or two people in this community have autistic children, too, so you may get even more information than you might expect. This board doesn't get much traffic, and most of the "medications experts" tend to stay on the Medications board.
I do have a few questions myself, starting with your foster-son's age? Do you have previous experience with special needs children? I have the greatest respect for you for taking on that sort of challenge, especially since he's non-verbal, which makes it so much harder. And do you find you work well with his doctor AND the doctor who's prescribing the psychiatric medications? I hope they're not one and the same, by the way -- mostly because a good psychopharmacologist is truly one of the very best resources you can find in your situation. It's also because sometimes doctors take the "easy" way out -- if they don't find a physical cause quickly and easily, they attribute symptoms to mental problems. (I just had that happen to me -- the doctor I saw when my own doctor was out of the office said my symptoms, such as choking, and feeling as though my airway was obstructed, were caused by "anxiety." I told her no, my physical manifestations of anxiety were very different from this. She shook her head, and handed me a sample of Nasocort -- which, of course, fixed the problem, since it turned out to be allergies...)
When I worked with horses, we always called the vet first when new behavior problems showed up. Check 'em out nose to toes, because they can't talk. Well, people -- verbal or non- -- deserve the same care we'd give our animals. Make absolutely certain he's not trying to communicate something about a physical malady. If it's clearly not physical, then another drug is probably in order.
Best luck, and I strongly recommend posting this on the main Medications board here.
And again, welcome to Babble!
Posted by JadeKelly on December 3, 2008, at 9:59:42
In reply to invega, posted by wamazon on November 22, 2008, at 21:20:05
> Help!
> I am a foster mom to a non-verbal young man diagnosed with autism/severe retardation/bi-polar
> whom has been on invega for almost one year. I think this medication is doing him more harm than good. He has rapid cycling episodes of happiness then agitation/aggression which are almost as intense as what he exhibited when experiencing withdrawals after being suddenly pulled off of zyprexa due to liver complications in Dec'07. If anyone has experienced invega for the good or bad and its side effects, can you please share with a very sad and frustrated care-giver.
> Thank you.Hello there,
You must be terribly frustrated and sad. Its so difficult to watch someone you care about suffer on a daily basis. I, too, have no experience with Invega, however, I do have experience with the medicine merry go round. I have to say I agree with Racer, I don't think his Bi-Polar is being managed.
My son is also Bipolar, started at 16, and the manic stages were aggressive, similar to what you described, and quite frankly, scary. He was rapid cycling for 9 months and it didn't stop until they had him so drugged up he was like a non-person. It was heartbreaking. So after a period of time, I couldn't bare it and did what you are doing. He takes depakote for epilepsy so we had our mood stablizer, PDoc's added large doses of Risperdal, then Abilify, they even put him on Haldol when the benzos made his mania worse.
He was only in the hospital for a week at a time (3x total) but I'd seen enough in there, and at home. I finally found a psychiatrist we could work with (for now), and we tried him on Seroquel. They said it wouldn't be strong enough for him. We started it any way, dealt with some pretty aggressive behavior at home (help from family, hope you get same) and titrated the Seroquel to a safe level that also has his Bipolar symptoms gone for almost a year. He is wonderful, easy to be around, mostly, and most importantly he is himself.
What I'm getting at is the meds can make the difference. But I think you know that or you wouldn't be here! Good for you for not just excepting what they hand out. Keep trying, something miraculous may come along!
Good luck to you, I'm going to look that med up when I'm done here. Surprized I've never heard of it. Keep us posted on how you do, and I hope you find the right meds for your foster child soon.
~Jade
PS-there are some really smart people on babble, I hope they see your thread and can help. I'll ask around, too.
>
>
Posted by wamazon on December 8, 2008, at 10:57:35
In reply to Re: invega » wamazon, posted by JadeKelly on December 3, 2008, at 9:59:42
Posted by JadeKelly on December 8, 2008, at 11:22:36
In reply to Re: invega (nm) » JadeKelly, posted by wamazon on December 8, 2008, at 10:57:35
Hi Wamazon,
Just got this (nm), wasn't sure...Did you mean to message me, or did I miss something? Let me know how you are.
Hope you are doing well!!!
~Jade
Posted by wamazon on December 8, 2008, at 11:36:17
In reply to Re: invega (nm, Jade Kelly) » wamazon, posted by JadeKelly on December 8, 2008, at 11:22:36
dammit, i must have submitted wrong. now i am too tired to repeat content of other post, haha!
will get to it when not as busy and thanks for getting to me.
Posted by JadeKelly on December 8, 2008, at 12:56:23
In reply to Re: invega (nm, Jade Kelly), posted by wamazon on December 8, 2008, at 11:36:17
> dammit, i must have submitted wrong. now i am too tired to repeat content of other post, haha!
> will get to it when not as busy and thanks for getting to me.
I've done the same thing a number of times, its infuriating! Especially when you put time into a well thought out post. Ughh!! I'll look for another whenever you get to it.~Jade
Posted by JadeKelly on December 8, 2008, at 14:56:36
In reply to invega, posted by wamazon on November 22, 2008, at 21:20:05
> Help!
> I am a foster mom to a non-verbal young man diagnosed with autism/severe retardation/bi-polar
> whom has been on invega for almost one year. I think this medication is doing him more harm than good. He has rapid cycling episodes of happiness then agitation/aggression which are almost as intense as what he exhibited when experiencing withdrawals after being suddenly pulled off of zyprexa due to liver complications in Dec'07. If anyone has experienced invega for the good or bad and its side effects, can you please share with a very sad and frustrated care-giver.
> Thank you.Hi again,
No need for response, just checked Wikipedia, Invega is very similar in its action to Risperdal, which my son took to treat his rapid cycling bi-polar. His manic phases were acute, and scary. Risperdal, however, turned him into a zombie. I hated it.We tried Abilify, same result. I couldn't stand how he was on these meds so asked for mildest anti/psych and went high end of dosing I believe of Seroquel (300mg daily). It has as worked like a charm for us. I don't want to think about how much of life he would have missed out on had we left him on those.
However, sounds like you have the opposite problem. We did at times, too. I would find out which of the Anti/psych's are safest for him, his liver, etc. Seems you could stay with Invega, but increase the dose, try Risperdal, Abilify, Seroquel, etc,. I'm partial to Seroquel but that doesn't mean its right for your foster son.
I'm not a Doctor, but it seems dosing or med, or both is causing this problem. If you can't go up in dose, there are lots of augments and adjuncts to help those meds work better. Check with his PDoc re: this list and augments.
I'll be hoping for a quick solution for you!
~Jade
>
>
Posted by wamazon on December 8, 2008, at 16:55:50
In reply to Re: invega » wamazon, posted by JadeKelly on December 8, 2008, at 14:56:36
Jade,
Yes, invega is similar to risperdal and exits capsule via osmosis. It is non-sedating which I thought would be good................psych asked if our guy's behaviors seemed speeded up, HELL YES. And it seems like it continues to accelerate or maybe days are just blurring all together.
Anyway, psych prescribed lithium at low starting dose over week ago and increased dose Saturday. If we observe benefit then Invega will slowly be discontinued. The doctor said that, more likely than not, meds are used in conjunction with each other for best results. I'd never taken that into consideration.
Also, we just started two week functional behavioral analysis. Day program people (who are all behaviorists) believe that behavior can be modified by looking at reinforcers, etc.
I am not going to have any expectations with any of this, reading lots of material, talking and just doing the best we can in giving love and support to our boy.
Thanks so much for your input.
Wanda> > Help!
> > I am a foster mom to a non-verbal young man diagnosed with autism/severe retardation/bi-polar
> > whom has been on invega for almost one year. I think this medication is doing him more harm than good. He has rapid cycling episodes of happiness then agitation/aggression which are almost as intense as what he exhibited when experiencing withdrawals after being suddenly pulled off of zyprexa due to liver complications in Dec'07. If anyone has experienced invega for the good or bad and its side effects, can you please share with a very sad and frustrated care-giver.
> > Thank you.
>
> Hi again,
> No need for response, just checked Wikipedia, Invega is very similar in its action to Risperdal, which my son took to treat his rapid cycling bi-polar. His manic phases were acute, and scary. Risperdal, however, turned him into a zombie. I hated it.
>
> We tried Abilify, same result. I couldn't stand how he was on these meds so asked for mildest anti/psych and went high end of dosing I believe of Seroquel (300mg daily). It has as worked like a charm for us. I don't want to think about how much of life he would have missed out on had we left him on those.
>
> However, sounds like you have the opposite problem. We did at times, too. I would find out which of the Anti/psych's are safest for him, his liver, etc. Seems you could stay with Invega, but increase the dose, try Risperdal, Abilify, Seroquel, etc,. I'm partial to Seroquel but that doesn't mean its right for your foster son.
>
> I'm not a Doctor, but it seems dosing or med, or both is causing this problem. If you can't go up in dose, there are lots of augments and adjuncts to help those meds work better. Check with his PDoc re: this list and augments.
>
> I'll be hoping for a quick solution for you!
>
> ~Jade
> >
> >
>
>
This is the end of the thread.
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