Re: Munchausen's WAS Re: Lost and frustrated, very long

[Guest guest]

So many of us have had this experience, or a variation of it! I'm still not

completely over my experience this summer with a well regarded " expert " at UNC

hospitals who told me that our dysfunctional family (based only on the info that

her Dad and I are divorced) was the cause of Ava's problems at school and that

he wouldn't treat her OCD until we had at least 6 months of family therapy. I

told him that our family was not particularly " dysfunctional " and that her Dad

and I were seeing a parenting consultant (who is also a therapist) to address

some parenting conflicts and to co-parent more effectively. I asked him to

supervise Ava's medication and treat her OCD but he

said that in asking for this was like " ignoring that the house was burning down

and instead fixating on why the garage door opener didn't work " . I kid you not,

those were his exact words.

As Kathy said, we are so vulnerable when we are seeking help and we want so

badly to cooperate in the process that we are often caught off guard by

incompetent medical practitioners who do more harm than good. One thing that

helped me in this situation was that this is a fairly small town and I know lots

of people and I learned through the grapevine that Dr. Smarty Pants had an ugly

divorce where money was a big issue, his kids don't like him, he has had a few

DUI's and even was jailed in another state because of one ( he refused a

breathalyzer test and he arrogantly refused to get out of the car). He also

lied about this to his new wife. So some of his " well

respected " status is due to his educational background,age, status and position

at the hospital rather than on anything that real people, patients, would

actually respect. Knowing all this about him helped me put his assessment into

the proper perspective. But it still makes me angry when I think about it,

which, thankfully, is not that often.

Anger is a big energy drain and this list makes it easier to see how common

these creepy doctor experiences are so we can let go of them and move on.

Dana in NC

[Guest guest]

I just want to add to Kathy R's wise perceptions that the best thing for me

has been to find this list. I have learned so much so fast I don't know

what I would have done otherwise.

Thank you all

Terry

Munchausen's WAS Re: Lost and frustrated, very

long

-----

[Guest guest]

Hi Kathy:

Like you I first heard of the M-by-p syndrome as a physical thing. I guess

the mental health professional's bead on things was that I was so

pathological and harmful to my child with my approach to things and the

traumas I had him go through as a little child, that this caused him to

develop OCD and I did this in some deliberate way to get more attention for

myself!

The things I got blamed for were to nearly drown in front of Steve and the

family when he was 2.5 years old, then develop advanced cancer when he was

3 and not be there for him when he needed me. Also I guess I told him his

grandma drowned herself when he was seven. ly I don't think this

person liked the way I corrected him about his OCD knowledge. He was hired

by the Felix program to do an assessment of Steve's treatment, I never

chose him to work with Steve. He looked at Steve like he was a spotted

zebra and told me that wow, OCD is so rare. Obviously he had studied some

of those Freudian-based texts you alluded to in your post. I told him OCD

is the fourth commonest mental health disorder and is frequently

underdiagnosed or misdiagnosed as sufferers are so secretive about their

worries.

From time to time I see this mental health professional in our community

and he asks me how Steve is. It cracks me up to tell him how well Steve is

doing as surely an M-by-P syndrome mom would not like it if her kid got

better and she got less attention and sympathy from everyone <VBG> He is

not a bad person, just unaware of how much suffering OCD families are

experiencing and how more criticism and guilt is the last thing we need in

this struggle.

Actually I think the most appalling is the way mothers of autistic kids

were called " refrigerator " moms and blamed for a no fault brain disorder.

Thinking of their suffering gives me goosebumps.

Thanks Kathy for your support and understanding, they are balm to my wounds

which even with humor take time to heal. Take care, aloha, Kathy (H)

kathyh@...

At 10:01 AM 10/13/2000 -0500, you wrote:

>

>----- Original Message -----

>From: " Kathy Hammes " <kathyh@...

>> I have even been written up as a Munchausen's-by-proxy syndrome mom by one

>> ignorant mental health professional.

>

>I don't get this. I thought M-by-proxy meant someone doing physical things

>to another to purposefully cause illness, get attention via hospital and

>doctor visits. Did this doc think you were doing things to purposefully

>create OCD symptoms in your son? How is that even possible?

>

>This has got to be the most appalling mistreatment of a parent desperately

>seeking help for an ill child that I have ever heard of.

>

>When I read 's letter yesterday I thought again how unfortunate it is,

>that OCD forces us into the unfamiliar and confusing territory of mental

>health services and treatments with an incredible sense of urgency. Our

>children are suffering, and we need help now! *Any* help seems better than

>none, and to begin with we lack the knowlege to make good choices among

>providers. It has got to be the worst possible starting point for making

>rational, informed choices for our children. We are so utterly dependent on

>the professionals we consult, and later when we've had a chance to sift

>through the barrage of information and can ask intelligent questions, we are

>accused of obsessing and interfering. I know I was, and it galls me that we

>*pay* for this treatment!!

>

>I have spent literal days on the phone, calling various therapists to locate

>one who will consider E & RP in a young child. I have heard the phrase " no,

>we need to determine why your daughter's anxiety is so high that it *had* to

>find expression in the disorder OCD " so many times that I know it must be

>printed in a therapists' (outdated) textbook somewhere.

>

>How??? was I supposed to reconcile the information that my daughter's sudden

>problems stemmed from a case of scarlet fever, yet the treatment recommended

>was to explore mysterious and vague causes of anxiety that " forced " her to

>develop OCD (with the heavy implication that her parenting and family life

>was the cause.) After Kel's initial three months of non-CBT counseling, we

>were told that we loved her too much. The counselor didn't even tell us why

>or how this could be related to her developing OCD--and we didn't ask

>because we felt so cowed and unsure of ourselves. I regret and resent the

>nights of lost sleep my husband and I endured, puzzling over how " too much

>love " can cause anxiety and OCD. Is THIS Munchausen's-by-proxy?!

>

>Kathy and others who share their experience and wisdom in seeking mental

>health care for their OCD kids do a great service--thanks to them we only

>spent three months with the " wrong " doctor and therapist before moving on.

>I can't imagine having made the journey from OCD onset through diagnosis and

>treatment, to today without the guidance and input of those on this list.

>

>Kathy R. in Indiana

[Guest guest]

HI Dana:

Thanks for the helpful reminder to let go and move on from anger. I know

for me this is a lifelong work in progress. I have my " Let Go " poem in

front of me every day. It really helps me.

As someone who has gone through both their own and their parents' divorce I

can tell you it is no fun but comes nowhere near the dysfunctionality of

dealing with OCD, IMO. As a divorce mediator I have seen more than my fair

share of how divorce can affect a family, but my vote is still for the

worse effects of OCD. Not to make OCD sufferers feel guilty, but just to

recognize how it mixes everyone up until we learn how to cope with OCD more

effectively. Also OCD is generally forever and people can learn to move on

from divorce until they almost forget about it completely (just my

optimistic opinion based on my experience).

I have met some excellent docs and therapists who have given us invaluable

advice and support and my gratitude and appreciation for them far outweigh

any residual anger towards others who may have provided " creepy " moments.

Take care, aloha, Kathy (H)

kathyh@...

At 01:45 PM 10/13/2000 -0400, you wrote:

>So many of us have had this experience, or a variation of it! I'm still

not completely over my experience this summer with a well regarded " expert "

at UNC hospitals who told me that our dysfunctional family (based only on

the info that her Dad and I are divorced) was the cause of Ava's problems

at school and that he wouldn't treat her OCD until we had at least 6 months

of family therapy. I told him that our family was not particularly

" dysfunctional " and that her Dad and I were seeing a parenting consultant

(who is also a therapist) to address some parenting conflicts and to

co-parent more effectively. I asked him to supervise Ava's medication and

treat her OCD but he

>said that in asking for this was like " ignoring that the house was burning

down and instead fixating on why the garage door opener didn't work " . I

kid you not, those were his exact words.

>

>As Kathy said, we are so vulnerable when we are seeking help and we want

so badly to cooperate in the process that we are often caught off guard by

incompetent medical practitioners who do more harm than good. One thing

that helped me in this situation was that this is a fairly small town and I

know lots of people and I learned through the grapevine that Dr. Smarty

Pants had an ugly divorce where money was a big issue, his kids don't like

him, he has had a few DUI's and even was jailed in another state because of

one ( he refused a breathalyzer test and he arrogantly refused to get out

of the car). He also lied about this to his new wife. So some of his " well

>respected " status is due to his educational background,age, status and

position at the hospital rather than on anything that real people,

patients, would actually respect. Knowing all this about him helped me put

his assessment into the proper perspective. But it still makes me angry

when I think about it, which, thankfully, is not that often.

>

>Anger is a big energy drain and this list makes it easier to see how

common these creepy doctor experiences are so we can let go of them and

move on.

>

>Dana in NC

[Guest guest]

Just some thoughts that occurred to me as I read the letters about the

doctors who like to blame the family for the OCD:

If there were as many heart surgeons misdiagnosing people with heart

problems as there are Psy-docs who don't seem aware of the latest information

in their fields, how many people would be willing to have heart surgery?

It seems to me that when a psychologist/psychiatrist gets in over his/her

head, his instinct is to holler " Bad mother! " and call for family therapy,

in which he probably has some experience.

Parents worried enough and responsible enough to bring their children for

help with OCD are probably prime targets for some blame throwing which seems

to be what some mental health workers do best.

The days of following " doctors' orders " without any questioning are

hopefully over. Thank goodness!

Jackie

[Guest guest]

Hi Jackie:

I also think about how treatments and diagnoses come about. I think there

is more patient compliance in heart surgery because treatments are fairly

well known among the general population and most heart patients are not

suffering from mental illnesses which interfere with their ability to

commit to treatment.

Diagnosis of heart disease is easier to do as it can rely on symptoms as

well as sophisticated tests. This is not possible for OCD where symptoms

which are kept very secret are the sole basis for diagnosis.

As a lay person it seems to me that mental health professionals are often

trained to look for family dysfunction as a cause of mental illnesses.

Certainly this is true among the general public. When kids get into

trouble the first thing we think is " how did the parents mess this kid up? "

I have certainly been guilty of thinking a friend was causing her kid's

problems when unknown to us both at that time, the child was suffering from

OCD and having meltdowns!

I hope that Louis does not get too upset about going off track here but I

can offer a little humor for this weekend:

SHORT HISTORY OF MEDICINE

" Doctor, I have an earache. "

2000 BC - " Here, eat this root. "

1000 BC - " That root is heathen, say this prayer. "

1850 AD - " That prayer is superstition, drink this potion. "

1940 AD - " That potion is snake oil, swallow this pill. "

2000 AD - " That antibiotic is artificial. Here, eat this root! "

Take care, aloha, Kathy (H)

kathyh@...

At 03:33 AM 10/14/2000 EDT, you wrote:

>Just some thoughts that occurred to me as I read the letters about the

>doctors who like to blame the family for the OCD:

> If there were as many heart surgeons misdiagnosing people with heart

>problems as there are Psy-docs who don't seem aware of the latest

information

>in their fields, how many people would be willing to have heart surgery?

> It seems to me that when a psychologist/psychiatrist gets in over

his/her

>head, his instinct is to holler " Bad mother! " and call for family therapy,

>in which he probably has some experience.

> Parents worried enough and responsible enough to bring their children

for

>help with OCD are probably prime targets for some blame throwing which seems

>to be what some mental health workers do best.

> The days of following " doctors' orders " without any questioning are

>hopefully over. Thank goodness!

> Jackie

[Guest guest]

Kathy -

Off topic or not, I love that " history of medicine " . I guess I get so

frustrated because here in Muncie, it seems as though the medical profession

doesn't even admit to the diagnosis of OCD. And the possibility of coming to

the home to do therapy is an idea that has not taken root as of yet. Surely

there are enough articles and journals that professional who are determined

to keep up with the latest treatments can find out about them readily!

Enough on this or I will get indignant all over again.

Thanks for the laugh.

Jackie

[Guest guest]

Kathy:

While the diagnosis of heart disease might be easier -- at least in men --

compliance with a treatment regimen is hardly universal. I've taken care of

diabetics who refuse to follow an ADA diet; heart patients who go back to eating

a high fat, high salt diet fresh from an angioplasty or open heart surgery, and

chronic lung disease patients who smoke with an oxygen cannula in their nose.

How many of you on this list will admit to not completing a full course of

antibiotics because you started feeling better after a few days?

As for diagnosing disease processes in women . . . most doctors view women as

hysterics and their very real medical problems as being all in their heads.

Women with heart disease present differently than men, and even when they have

classic chest pain their complaints are often disregarded. This is why fewer

women survive heart attacks than men.

Now who's off the subject?

Jule