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I am sorry, but I really don't know much about what you are asking. I am

wondering, though, about the medication. Why are antipsychotics contraindicated

due to her low weight? This may be something I don't know, since my

understanding is that these cause weight gain, so wouldn't that be beneficial to

her?

I could be wrong but it seems like if there was some way to get medicine in

her you could see huge progress. Obviously she won't recognize that right now.

I keep being told I can't give in to my daughter's compulsions or that will

strengthen them. If she has tried activan intermittently isn't there anyway

you can switch to an SSRI or antipsychotic. I realize it is more complicated

than I am making it seem, but I will tell you that my daughter considers both

her Zoloft and her Seroquel her miracle drugs. They have given her back her

life. She still has issues but not to the same degree. Good luck. Kim

In a message dated 9/5/2005 1:12:21 PM Central Standard Time,

nmlinnen@... writes:

Taking medication is a big exposure (b/c it is not in her eating

ritual) that we have been working on but have not gotten far yet (she

has tried ativan intermittently), and antipsychotics may be

contraindicated for the time being at her very low weight (besides

the fact she refuses them).

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Hi Grace

So she's on no meds at all, wasn't on any in the hospital either?

Like you, I wonder if the hospital trauma might have triggered this,

maybe some PTSD? At any rate, I'm sure her " system " has been quite

shook up by her own diet/health, the hospital, coming home....

Any part of this just show up at night, at bedtime or maybe she

awakens (like night terrors or something)?

Curious, any more detail on the voices, male or female, what they say

to do, etc., any names?

Like you, I'd be telling her to ignore them, distract her from them,

maybe even boss them back (like OCD). I know for some people, you

know this too, that medication can get rid of visual and auditory

hallucinations; but for those it doesn't help, I think just

distracting them, teaching them to ignore them or even " shut up, I'm

not listening to you " type bossing back is maybe what is generally

done. Like you, I think stress, upset, tiredness, etc., can make

them appear/worse sometimes. I know of a couple consumers (where I

work, mental health) that are just taught to ignore their voices,

aides distract them, etc., try to get them to focus on task/whatever

at hand.

Let us know how things are going. At least you do have a therapist

working with you/her on this!

> Sorry to pop in here only when a new probelm comes up-but there is

> such alot of experience on this list I must always come back every

so

> often..

>

>

> Does anyone's child experience frightening voices that limit doing

> exposures? My 13 yr old has voices which I believe were triggered

by

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Before my son was Dx with OCD/ADHD, he would complain about a voice, it was

male, and he would tell me that it made him do things he didn't want to do. He

was put on an anti psychotic for about a year and a half, he is off of it now,

and we haven't had any more voices in his head. The anti psychotic worked

wonders for controlling that, have you thought about putting your child on a

mild

one?

Shamra

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mnmomof1@... wrote:

>

> I am sorry, but I really don't know much about what you are asking. I am

> wondering, though, about the medication. Why are antipsychotics

> contraindicated

> due to her low weight?

Hi ! I don't have any answers for you, but I wanted to add to this

as well. Both times my daughter (10) couldn't eat and was significantly

underweight, our pdoc added Zyprexa along with her SSRI. She was only

on it 2 mos. both times, but had significant weight gain, which was

great in our case. I wouldn't hesitate to add it again for the short

term if her weight was dropping. Was there a reason you couldn't add an

antipsychotic? Both times we added Zyprexa, she's had a complete turn

around.

Dina

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Hi Shamra,

Can you please tell me what is the name of the anti psychotic that your son

took. I'm so happy for your son to go back to his normal life free of any

psychotic sypmtoms, Thank you.

Huda

>From: bugkk56@...

>Reply-

>

>Subject: Re: voices

>Date: Mon, 5 Sep 2005 21:19:06 EDT

>

>Before my son was Dx with OCD/ADHD, he would complain about a voice, it was

>male, and he would tell me that it made him do things he didn't want to do.

>He

>was put on an anti psychotic for about a year and a half, he is off of it

>now,

>and we haven't had any more voices in his head. The anti psychotic worked

>wonders for controlling that, have you thought about putting your child on

>a mild

>one?

>

>Shamra

>

>

>

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I have since lost your original post and don't remember how old your daughter

is--I believe she is a teen? My youngest daughter, , was seven when she

was diagnosed with OCD. She frequently commented on both " voices " and

" Seeing Things. " People working with her thought she might be schizophrenic but

I

had a feeling that she wasn't. It turns out that I was right. It was OCD and

the " voices " she heard were actually the thoughts in her head. The " Seeing

Things " were those same thoughts seeming so real. Does she believe the voices

are real? At seven, could tell me that she knew they were not real. Once

's OCD was under control, things got much better and the voices and

visuals went away. We haven't had a Seeing Thing in a couple of years! Good

luck--Kelley in NV

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I am so sorry that you are going throught such a difficult time. I am

by no means a psychaitric professional. However, I am a nurse and I

think that your daughter's audiotory hallucinations are schizophrenic

and antipsychotics then would be the treatment. I think that there

are injections that can be given on a weekly basis if I am not mistaken.

Yours is a very complicated situation (weight issues). If it is her

psychiatric state causing the weight problems I would think that at

some point, the meds would be beneficial - however, I understand how

meds can cause appetite problems.

I hope that your psychiatrist is spending a lot of time with you and

your daughter - it sounds as if that is what she needs the most.

My best to you,

Bonnie

> Sorry to pop in here only when a new probelm comes up-but there is

> such alot of experience on this list I must always come back every so

> often..

>

>

> Does anyone's child experience frightening voices that limit doing

> exposures? My 13 yr old has voices which I believe were triggered by

> her admission after brief hospitalization (for not eating-but she was

> found stable) to a teen residential facility, where she was badly

> manhandled (forcibly restrained and searched with male security

> attendants) during the admission process. She has such severe sensory

> isuses with touch and modesty about her clothing etc that this was

> (imo) very abusive for her. I could not remove her b/c she was put on

> a 72 hr hold. After the hold I decided to have her stay b/c she was

> actually eating (had been on a fast b/c her ritual got messed up)

> but then removed her at the end of the week b/c the approach was too

> restrictive and punituive for 70 lb girl who had always been gentle.

>

> When she came home a week later the voices started, and spells of

> prolonged screaming (much more than the brief frustrated but blood

> curdling screams we had been used to as part of her undiagnosed

> atypical autistic spectrum) and horrific self and external

> destructive tantrums (whether these had to do with the malnutrition

> or a type of PTSD is unclear). We (ocd therapist) have been able to

> work on the panic and tantrums and meltdowns, they are much reduced,

> but she has these voices that think inhibit progress in exposures

> for her ocd eating rituals.

>

> She is attempting mild and gradual exposures, but the anxiety

> triggers the voices. However she has made notable (baby steps)

> progress, and we are slowly getting my older daughter extricated too

> (she copies my older daughter's eating, and that is the only way she

> can eat). Hospitalization for weight loss related helath concerns is

> always on the back burner.

>

> She is really scared of triggering the voices. This makes doing the

> therapy more difficult, plus I bear the brunt of the anxiety from the

> voices which cause her to act very perverse (she'll she do the

> opposite of whatever I say, or completly rebel against any simple

> normal request, or require me to do some type irrational corrective

> behavior according to the voices-otherwise meltdown panic etc) but

> she is only like this during the spells when the voices act up- which

> may be only once or twice a week or may be several times in a day.

> Sometimes she even says I am a voice. She does not want to talk to

> anyone else about the voices. I tell her not to listen to the voices

> just like we don't listen to ocd, but they seem to be very demanding

> and intrusive. I also wonder if it is just externalizing the ocd and

> calling it voices (but why the plural?) ...but the degree of seeming

> control over her that comes on dramaticaly and suddenly makes it seem

> more intrusive that what we had with ocd previosly.

>

> Taking medication is a big exposure (b/c it is not in her eating

> ritual) that we have been working on but have not gotten far yet (she

> has tried ativan intermittently), and antipsychotics may be

> contraindicated for the time being at her very low weight (besides

> the fact she refuses them). She does have alot of coping mechanisms

> in the home, such as resting in her room (we gave her her own room

> sometime ago though the others are 4 to a room now) with soft music,

> taking short walks, using a heating pad, and reading her favorite

> books (she decorates her room with flowers, prints etc).

>

> Still the tantrums and destructive impulses reemerge when the voices

> are triggered-she cannot tolerate any criticism or seeming criticism

> whatsoever(also triggers it). The reason I did not like the

> residential facility is it took all the coping mecahanisms away-just

> an empty room no priveleges whatsoever, plus the approach was like

> treating a criminal, which is of course as critical as anyone can

> experience.

>

> So I'm wondering should we add an additional diagnosis to the ocd

> plus autistic spectrum plus social phobia (i/e a variety of

> schizophrenia) or is that too severe to pin on a 13 yr old at this

> stage? And would it make any difference in what therapy we are trying

> to do?

>

> The main thing I've gathered from some initial research is that

> people dealing with auditory hallucinations need to have stress

> removed as much as possible (so should we keep doing exposures the

> same way?) and need to have structure and constructive engaged

> pursuits. (So again I think a hospital or residential ward can be

> counterproductive unless we get to the life-threatening point).

> Just fishing for thoughts or shared experiences, I seem to always be

> facing a new and scary symptom as the years go by...

>

> nancy grace

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Hi I have been curiuos about the voices too, but don't ask

alot of questions, just listen, b/c I have this feeling of not

wanting to " legitimize' them somehow, maybe that is not helpful

though. But I have gotten mad a couple times and told her that I do

not have to listen to or obey the voices (when I " must " do their

bidding) and she should not either. Probably my getting furious is

not helping either. I try to put a lid on it knowing it makes her

worse...

It does seem like it could be a more vibrant 'externalization' of the

ocd in her case. It seems odd in that we should exteralize the ocd so

it can be bossed back, but what if it becomes external in such a way

it takes on it's own entity if that makes any sense. She should not

be believing ocd is actually personsified as something real, but that

we've talked of it that way only as a tool for bossing back. She has

said they are her own thoughts turning into voices and they only seem

real, so at time she is thinking of it as a mind game not someehing

real. But other times she she acts on it and speaks of it as if real.

So all I have gathered is there are different voices, and they can be

in unison, or can be like yelling, and sometimes the voice is my

voice.

I can tell when she is having voices (took awhile to make sense) b/c

she suddenly becomes more perverse demanding and and irrational in

her behavior. I have hoped it is a product of stress that will start

to go away once we get her re-nourished and get a better handle on

the ocd.

It does not happen at night or in her room b/c her room is her stress

free zone it seems. When we were away on our " menu-trip " (see prior

post) the voices came every day at the same time, prior to eating her

dinner. I would actually have to leave at that time, though there

would also be a problem with the voices not letting me leave, at same

time my daughter was telling me I need to leave-that is what I mean

about the perversity. I guess I am torn between wanting to downplay

this aspect, maybe temporary, maybe ptsd, but contemplating the

psosibilty of a more sevre or progressiing mental illness, so

needing (but not really wanting) to know more...

nancy grace

> > Sorry to pop in here only when a new probelm comes up-but there

is

> > such alot of experience on this list I must always come back

every

> so

> > often..

> >

> >

> > Does anyone's child experience frightening voices that limit

doing

> > exposures? My 13 yr old has voices which I believe were triggered

> by

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She frequently commented on both " voices " and

" Seeing Things. " People working with her thought she might be schizophrenic

but I

had a feeling that she wasn't. It turns out that I was right. It was OCD and

the " voices " she heard were actually the thoughts in her head. The " Seeing

Things " were those same thoughts seeming so real.

.....

Same here, with my son. It scared me, at first, but I think they were just

really strong manifestations of his ocd. Haven't heard about them in years.

AFraid to ask.

kimz

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Hmmm, maybe they are her own thoughts, sort of talking to oneself.

(LOL, I carry on conversations with myself all the time!) And maybe

her thoughts/voices go along with her mood and/or OCD? Her OCD needs

making the " demands " etc.

I see your point about externalizing it, the possible downside of

that. She is booksmart, so should you maybe go back to " chemical

imbalances in the brain, don't listen... " or similar? I've seen

dopamine mentioned a lot re auditory/visual hallucinations. Just

what you/she needs, huh, first the serotonin tie to OCD and now a

dopamine imbalance! (none of that being techically accurate, of

course!) I'm not familiar with bipolar, unipolar, all that (tho

think dopamine plays in there), but is there an " age " where it's

common for that to show up, like puberty? I think schizo is usually

around age 18 or so....

I know I hoped " logic " would win with , what with his logical

type thinking and " booksmartness " and I do think it helped in

understanding, but not necessarily with the " fighting " of OCD.

Though he did recently say that he was able to conquer some of his

compulsions since they made no sense, like repeating stuff.

I think the messing up & substituting for foods is a great step. And

that she not question sis' food log. (nice of sis to do the log)

Interesting how she picked someone else to copy while in the hospital.

Well, I have rambled on long enough! Keep us updated on how things

are going, I'm sure it's a delicate balance between physical health

and the other!

> Hi I have been curiuos about the voices too, but don't ask

> alot of questions, just listen, b/c I have this feeling of not

> wanting to " legitimize' them somehow, maybe that is not helpful

> though. But I have gotten mad a couple times and told her that I do

> not have to listen to or obey the voices (when I " must " do their

> bidding) and she should not either. Probably my getting furious is

> not helping either. I try to put a lid on it knowing it makes her

> worse...

>

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Hi --

I don't know that she'd necessarily need another diagnosis. My

daughter, at 11, was hospitalized for OCD/depression. When she

mentioned she heard voices they added risperdal. A month later, when

she returned to the hospital, they switched to seroquel. Anyway, the

good news is that, despite the voices, they determined that she didn't

have any underlying psychosis, such as schizophrenia -- I think they

called it OCD with psychotic episodes. She is now 13 and off anti-

psychotics -- so the good news is that it seems to have subsided.

She'll occasionally still hear her name being called (in kind of a loud

whisper, she says), but they no longer tell her she should kill

herself. In my opinion, I'd suggest trying an anti-psychotic if at all

possible, because I know the voices can be extremely scary. Good luck

to you -- sounds like you and your daughter are going thru a really

hard time -- I feel for you. suzanne in ca

> So I'm wondering should we add an additional diagnosis to the ocd

> plus autistic spectrum plus social phobia (i/e a variety of

> schizophrenia) or is that too severe to pin on a 13 yr old at this

> stage? And would it make any difference in what therapy we are trying

> to do?

>

> The main thing I've gathered from some initial research is that

> people dealing with auditory hallucinations need to have stress

> removed as much as possible (so should we keep doing exposures the

> same way?)

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Hi --

I don't know that she'd necessarily need another diagnosis. My

daughter, at 11, was hospitalized for OCD/depression. When she

mentioned she heard voices they added risperdal. A month later, when

she returned to the hospital, they switched to seroquel. Anyway, the

good news is that, despite the voices, they determined that she didn't

have any underlying psychosis, such as schizophrenia -- I think they

called it OCD with psychotic episodes. She is now 13 and off anti-

psychotics -- so the good news is that it seems to have subsided.

She'll occasionally still hear her name being called (in kind of a loud

whisper, she says), but they no longer tell her she should kill

herself. In my opinion, I'd suggest trying an anti-psychotic if at all

possible, because I know the voices can be extremely scary. Good luck

to you -- sounds like you and your daughter are going thru a really

hard time -- I feel for you. suzanne in ca

> So I'm wondering should we add an additional diagnosis to the ocd

> plus autistic spectrum plus social phobia (i/e a variety of

> schizophrenia) or is that too severe to pin on a 13 yr old at this

> stage? And would it make any difference in what therapy we are trying

> to do?

>

> The main thing I've gathered from some initial research is that

> people dealing with auditory hallucinations need to have stress

> removed as much as possible (so should we keep doing exposures the

> same way?)

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  • 7 months later...
Guest guest

It's been really interesting reading about the sound of voices.

I didn't laugh at the first voice I heard. I was a bit dismayed. But I *was*

grateful to be hearing it at all. Momentarily. By the end of the first day I

was really down. Everyone sounded the same. Even my voice was

indistinguishable from others.

The next morning, though, my voice sounded a bit different from my wifes.

I think that now, after close to 4 months I'd describe voice sounds as " tinny " ,

rather than " Ducky " . It seems now that my voice sounds a bit the way I

remember ny Mercer sounding when he sang. Maybe, in that case, " gravelly "

would be more accurate. But others remind me of the artificial voices portrayed

sometimes by robots or other speaking machines. I have no idea what I sound

like to others.

Strange. Other sounds are as I remember them. Clicks, chirps, thunks, clinks.

It seems that sound combinations are the confusing ones. A single note on a

musical instrument sounds right. Chords are awful.

I often wish I could record sounds the way they sound to me so that others could

hear them that way rather than trying to express them with words <g>.

This is a great group and I thank Ted for pointing me this way.

Virg

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Guest guest

You're welcome, Virg. I hope someone can throw some light on your

problems, so that you can talk to your audio and try and get them fixed

up, so that you get a better outcome. It was when I read in here of

people comparing programmes that they had tried, that I thought it

might be a good place for you to have a look. When is your next mapping

session?

Ted F.

>> I often wish I could record sounds the way they sound to me so that

> others could hear them that way rather than trying to express them

> with words <g>.

>

> This is a great group and I thank Ted for pointing me this way.

>

> Virg

>

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Guest guest

When I got my 2nd implant activated; my audie said how does it sound. I said

" Quack, Quack, you sound like Duck. " I am sorry but you really do sound

like Duck. She burst out laughing. I had tried to keep my promise not to

imitate a cartoon character. I guess she was tired of being told that she

sounded like one of them. LOL

Snoopy

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Guest guest

hello snoopy,

I know you will hate to hear this, but I got immediate results after my

activation with my 3G. My audiologist sounded high pitched, but with a few

adjustments, he sounded fine. I went home and made successful phone calls.

By contrast, when my Freedom was turned on, it sounded as if a tiny baby

needed to be changed and it was having a temper tantrum directly in my ear.

Although it has taken longer to adjust with my Freedom than with the 3G,

I am now making progress after almost 6 month's activation. I emailed my

audiologist today and told him I felt ready for the ace strategy. I want

and need adro which is not available with my speech programs. I am sure

sound will get even better in the future, and God has blessed me richly.

Larry

Re: Re: voices

> When I got my 2nd implant activated; my audie said how does it sound. I

> said " Quack, Quack, you sound like Duck. " I am sorry but you really

> do sound like Duck. She burst out laughing. I had tried to keep my

> promise not to imitate a cartoon character. I guess she was tired of

> being told that she sounded like one of them. LOL

>

> Snoopy

>

>

>

>

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Guest guest

hi ,

I am using the speech strategy. It has been much harder for me to get

accustomed to the Freedom than it was with the 3G. However, after almost 6

month's activation it is getting much better. I was able to understand my

telephone with the Freedom today. I emailed my audiologist and he told me

he will be glad to set me up with ace on one processor and hi ace on the

other. I hope I answered your questions. Larry

Re: Re: voices

> Larry,

>

> What programming strategy are you using now if not ACE? Are you using ACE

> at

> a lower speed and have the desire to try HI-ACE?

>

>

>

> Left ear - Nucleus 24 Contour Advance with 3G

> Implanted: 12/22/04 Activated: 1/18/05

>

> Right ear - Nucleus Freedom

> Implanted: 2/1/06 Activated: 3/1/06

>

>

>

>

>

>

>

>

>

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Guest guest

Hi Larry,

I'm afraid I still don't understand what speech strategy you are using. Are

you using CIS, SPEAK, ACE or HI-ACE? You didn't mention any of them in your

last message which still leaves me a bit confused. Congratulations on using

the phone for the first time with the Freedom! <smile> My overall adjustment

in terms of speech understanding has been better with the Freedom compared

to the 3G. I pick up more high frequencies and a greater depth/richness of

sound with the Freedom compared to the 3G.

Left ear - Nucleus 24 Contour Advance with 3G

Implanted: 12/22/04 Activated: 1/18/05

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

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