[Franziska]

Quote

This site is really a first-person site. It's about the people who are mentally interesting, not their spouses, not their parents, not their children. ... But don't expect an answer to questions about someone else's meds. We don't play that game. It doesn't work that way.

In the main, I agree with the first-person rule, and I appreciate its intent. But I think there are legimate exceptions, such as parents of minor children, and guardians or conservators of severely disabled adults. Here's my deal: I'm "conservator of the person and estate" for my developmentally disabled 34 year old brother. (Essentially, I have all the obligations and powers of a guardian - I didn't go for guardianship because it would render Dave legally a child, which seemed an unecessary indignity.) Both practically and legally, I have to make decisions about medication for Dave. In addition to the severe cognitive and communication impairments he's had since birth, he has been diagnosed with OCD. I sure would like to ask the OCD folks for their advice - being a depressive doesn't give me much insight into OCD and its treatment.

Can this rule (or guideline or whatever it is) be modified to acknowledge exceptions for those situations where one person must decide on another's behalf?

[crazynotstupid]

I think the effective part is. "don't expect an answer to questions about someone else's meds. [or conditons]."

Ask away, just don't hold out high expectations for any good feedback.  Really, it's difficult to give advice on third-party problems.  I think that's the issue here... transalation of information (especially in a case like yours, where the first party may not be great at communication) from one party to another to here can cause great difficulty in any useful advice.  Thus, many people may be reluctant to answer, or their answers may be vagure, unhelpful, or along the lines of "ask his/her doctor."

It's just much easier to help someone directly. who can describe their own problems in their own words.

[Franziska]

jerod23, on Jun 4 2005, 01:53 PM, said:

... the developmentally disabled (and they'd have to be really out of it to not be able to either type something themselves or have someone type for them)

I would not describe my brother as really out of it. He is usually happy; he has friends; he is a sports fan and loves to play softball, basketball and go bowling. He really loves family get-togethers and going camping. He has a supported employment job where he mostly rolls silverware into napkins at a pizza place. He has 24 hour supervision at a group home whose owner I recruited into that business myself on Dave's behalf.

He cannot speak, read, write or count (and yes, good therapists and educators, and we in the family, have tried to teach him).  His concept of time is limited to now, later, in the past, days and days from now, and months and months from now. He also seems to have some idea of the concept of a calendar, at least when it comes to major holidays. His expressive communication is in the form of modified ASL signs and idiosyncratic gestures comprising two or at most three word phrases that reference a concrete object or a remembered experience. His receptive language is much better; he seems to understand much of what is said to him and is aware of what is going on around him. But we have never had any luck discussing his feelings or emotions with him. We just get a blank stare and then he uses a sign for football, or for work and money (for instance, if he got paid that day), or he'll just get up and go do something else.

We have to make judgements about his emotional state from his behavior. Mike and John, his careproviders, noticed that he seemed increasingly anxious for no particular reason (I wasn't seeing this at family events) and was spending increasing amounts of time in his room compulsively ripping up bits of paper. He's always done that, to a certain extent, but never to the point that it interfered with his other activities. Asking him about it yeilds a stare and a shrug. So the p-doc dxed OCD and prescribed Risperidol at a dose of 0.25 twice a day. Risperidol is his only medication. It seems to have helped. But is it optimal? I don't know. That's why I was asking for help in evaluating the situation.

A cognitively disabled person does not have to be really out of it to not be able to either type something themselves or have someone type for them. Dave is all in it, believe me.

You can also believe me when I say that I understand what you guys are saying about the difficulty of giving good advice in these situations. It might be nearly as difficult as making the decisions on another adult's behalf, as I must do.

This is the best place I could think of to ask for help.

[Franziska]

Thanks, Jerod.

Quote

1) Risperdal is OK for OCD + anxiety.

2) If someone is in the developmentally disabled axis, an antipsychotic is going to be a first-line med regardless. Sure, an SSRI might be a better med to try first, but it will probably be one hell of a fight to switch from Risperdal to, say Prozac.

If it seems to be working and not making him, for lack of a better term, dumb (e.g. he can still sign, his time concept isn't messed up, his employment skills aren't affected, etc.), then Risperdal will be the way to go unless something wacky like EPS shows up.

This helps me feel more at ease. I went ahead and posted in the OCD forum, in case anybody has tips on behavioral indications I might look for in keeping an eye on the OCD situation. Dave is being monitored closely for EPS by his careproviders, and none of us have seen any sign that Dave's edge has been dulled. So far so good.