Expert: Libby Bonner - 4/8/2009

Question
QUESTION: My daughter is 19 years old.  She was diagnosed as bipolar at the age of 14. For five years we have done our best to get her help.  She has been to several psychiatric treatment facilities.  She has always denied having bipolar disorder.  She prefers to be labelled a criminal or a drug addict although her drug use is minimal.  At the last PRTF,  the psychiatrist said he questioned the bipolar diagnosis and added the diagnosis of PDD-NOS.  Thought and Judgment and Social Disabled.  He took her off her bipolar meds.  I teach a NAMI class called Nami-Basics and she meets every criteria listed in the NAMI publication on child-onset bipolar.  I was ok with him taking her off her meds b/c in five years of med changes we had never "gotten it right".  I figured no meds was worth a try!  She began assaulting me and her dad, damaging the house, being hypersexual, has recently moved out of our home, became a prostitute (she is fascinated with being bad), etc.  She is now in jail.  She admitted to selling marijuana.  Claimed it. Took the blame for it.  Was proud to do it for her friends.  I took the stand to not try to commit her or put her anywhere else.  But I am questioning myself.  and my question to you is...what can I do when she denies she is ill...refuses to allow anyone to help...swears she will not take meds if they are prescribed, etc.  She has a therapist who wants to find a placement for her but my daughter is not compliant.  Doesn't want help. Wants to get back on the streets. At times I can be peaceful with the fact that I am not the person to help her but today is not one of those days!  Thanks. Sheila

ANSWER: I'm afraid that my personal and NAMI experiences are at the other end of the spectrum from yours, so I may not be your expert.  My daughter became sick at the rather usual age of 20 and my own NAMI activity for several years has been to facilitate a NAMI family support group for those whose family members became ill as adults/young adults.

From your daughter's behavior off meds, it certainly sounds like bipolar.  [For more criteria, see mentalhealth.com]  Was she an in-pt when taken off, and then sent home right away?  Surely not.  Hope the doc at least tapered her off.  What a nightmare.

Not sure:  " I took the stand to not try to commit her or put her anywhere else."  You didn't want a psychiatric committal? didn't want her....what?  I'm lost.

Tell me also:  "She has a therapist who wants to find a placement for her but my daughter is not compliant."  This would be a residential facility?  Locked? Not locked?  But she could not go if she didn't take meds???

My only ideas follow.

Can you afford residential care year after year?  If yes, then you could get the legal means to do so - committal, or guardian of her person, or --  I don't know.  If finding an atty is a problem, try the state NAMI office, or nami.org, or treatmentadvocacycenter.org

There is a book by Amador called I am not sick, I don't need help.  ONLY use or get the later edition.  His method is a lengthy one, but there is much in his book you can use....and I believe he also addresses committals, etc.  He also discusses "denial" at length.

One of the reasons his book comes to mind is you saying that she is willing to be, or be called, anything but bipolar.  Amador would ask: what do you want?  what do you want to be called?, etc., and would work w/ thatm esp what do you want, to persuade the person that meds can get her there....no deceit involved, either.  Do spend some time w/ the book.

I would not have thought of this had you not mentioned the PDD dx.  I think the diagnosis is probably not correct, BUT the high-functioning autistics perhaps have some out-of-control issues similar enough that some of the autism material might help you?  The autistic parents are a way more activist group that NAMI - I would browse around in there....for instnace, perhaps to find residential care where medication would not be an issue.  --- I am not suggesting that treatment methods for autism would be helpful.    --- I might try to get into contact w/ some articulate moms of high-functioning patients, to see if you have any common issues at all.....or even to make a helpful support connection for yourself.

Support for you.  Have you contacted your trainer for Basics, or the person/s who wrote the course material?  Might there be fresh ideas there???

Oh.  Another excellent national mental illness group that I think is not as widely spread as NAMI:  Mental Health America.  They might have a support group near you and/or you might find their main web site helpful.

My last thought:  is there anyone at all who is successful w/ some interactions w/ your daughter, someone she tolerate or likes?  I am wondering whether that person could use Amador's method and dialogues w/ her more helpfully that a parent could.  [Could be anyone at all, but could be a professional willing to have a shot at the method.]

Disability.  Well, here's another thought.  Assuming that maybe at some point she is going to make an application for SSI - or is she on it now??? - it would be good to get that PDD-NOS dx dropped pronto; it would be a big barrier to getting SSI, I think.

And another thing.  This is my desert island book, the one, the only.  Author is Woolis; title is When someone you love has a mental illness.  Will help any family/friends communicate more effectively, communicate in ways less likely to create unintended consequences like violent anger, and will, in general, make you fell less helpless.

It sounds as though you are doing such a good job w/ just coping and being - I do wish I, or anyone, could be a really tremendous help, w/ magic answers.  I'm sure your Basics class is clear about not letting this BE your life, and I suspect you do pretty well w/ it.  

Well, still another idea.  If and when you have authority to make decisions for her, have you, or you and docs, discussed ECT?  I don't know whether it is appropriate for her, nor whether she would fit guidelines for its use.  I just know it is very different now from decades ago, has re-entered mainstream thinking, and does wonders for many who have exhausted other options.

Do take care of yourself.  Probably none of what I have written will open a new door, but one hopes.

---------- FOLLOW-UP ----------

QUESTION: Thank you for your response. I'm gonna try to answer some of your questions: The "not gonna try to commit her" means that I have committed her to our state psychiatric hospital 4x's as a child and 2x's as an adult. The adult committals did not help much.  The hospital is known for telling patients they are ok and sending them home way too soon.  The last residental place I sent her said when they discharged her...she is not ok...but she has benefitted all she is going to be able to benefit from our program....so right now I don't feel like I need to "put her somewhere" it doesn't help much and her resentment toward me is hurting her and helping her denial....nothing wrong with me, Mama just keeps putting me in these places kind of thinking.
She was an inpatient when taken off meds....I don't think he did a lot of tapering but she was off for a couple of months before she came home.  He admitted that he saw a lot of hyperactivity but it wasn't getting in the way of her functioning at that facility at that time.  His main reason for not dx'ing her bipolar was that she was sleeping good...I don't think he considered that she had been on mood stabilizers and antipsychotics for five years and that is why she was sleeping well or that she did not tell the truth about her sleep issues.
Regarding your question about placement...we think whitney would do well in a therapeutic group home or supervised living situation but she is so against the mental illness label that she is vehemently opposed to any living arrangement that might remotely be therapeutic.
She is on SSI now...she has a spot on her brain that shows up as abnormal on a MRI...an unidentified bright object in the deep white matter..association fibers of her brain coming out of the left ventricle...I think that helped her get approved for SSI on her first try when she turned 18. I'd like to learn more about the PDDNOS dx hurting her SSI...she does have to be reviewed regularly.
Regarding the ECT, it has been mentioned but not actually done.  

Now more questions from me....can you tell me more about the "legal means" to get her in residential care...
I will grab hold to your suggestion of the two books...I've already called the NAMI office and found out that we have the Woolis book....we (NAMI) probably have the other but I bet it is older so I will take your advice and get a newer version.  She really likes her new therapist so I will get/read the book and then refer it to her therapist.  Yesterday my brother got her out of jail on bond and he is going to try to get her in a place called mercy ministries....He is such a manipulative person himself that I think he may be able to affect her rigid thinking...he told her they may put her in their california location...lots of maybes but if she is listening to him right now then that is ok with me!  Once again, I just think it is important for her well-being that I not be the one who "does something to her" .
I must admit that the PDDNOS aspect just overwhelms me and makes my mind go to mush...I have studied and associated with the bipolar aspect for so long.  It seems that this dx is very general...I  can't even associate behaviors with it..except maybe the rigid thinking...I didn't mention but she also has a pretty low IQ...80...low enough to cause her cognitive issues especially as they relate to regulating her emotions and social decisions.
Thanks again for your reply.

I will check on the Mental Health America resource and will get and read the books you suggest.  I'm also gonna try real hard to get into a family-to-family class.  It is one of the few NAMI classes that I have not taken.

Answer
Will do my best w/ this.  I know very little about child psychology/child psychiatry.

First, I think I am wrong about the PDD-NOS hurting her SSI.  If the MRI and and her history to the time of application for SSI [and the bipolar dx was already in place?] fot it for her, then I wouldn't imagine you'll have trouble.

I also happened to read more about autism the same day I had first answered you, and PDD seems so very unlikely to me.  

By "legal means," I only meant the Amador is not suggesting anything shady or deceitful....his method, of which I spoke.  I wish I did know a way to get any of the unwilling to take meds, go to hospitals, etc....

Here are my only new thoughts, triggered by some reading and by your further info.   

You mention her IQ.  The other [perhaps more serious] problem that will continue to cause problems for her, for everyone - and as a Basics teacher you probably teach this - is that early illness interferes w/ normal developmental tasks...that will either be skipped and forever missing, or will occur incompletely or incorrectly.  ---  Even in the population of which I spoke, 20 yr old or so, they will miss the ensuing 4 yrs or so of development and, having probably been sick for a couple or more years prior to dx, are missing those as well.  It causes permanent problems - their chronologic ages will not reflect their fixed developmental stage.

And then her behavior now, as you described it, and the rigid thinking that you mention.  I don't know whether children, by definition still forming character and personality, can be said to exhibit classic personality disorders.  But if so, has borderline disorder been ruled out [now called something like Emotional intensity disorder] or have the other classic personality disorders?

Borderline might suggest that she would respond to its new 'dialectic' [I think] therapy.  But I would expect a much harder road w/ the other PDs.   A fixed personality disorder might have much to do w/ her acting out and her apparent denial.  [The borderline seems logical to me because it is so chaotic...and also because fear of abandonment is prominent.....I am assuming the committals feel like abandonment, though you somewhat imply that she sees them as simply the cause of her problems.]

I am way sticking w/ Amador, as far as dropping a lable [bipolar] that she so dislikes.  You are looking for win-win, so if she doesn't want to be bipolar, fine.  She can call it something, or nothing; you just want her safe and to be a well as possible.

But, as you and I both agreed, you are not the one to do the next thing if the new therapist or your brother can.

I wish you good luck -- better luck than formerly with this.  I hope the Amador will help, or the ideas re personality disorders.

Do write again if you think I can help.