Re: Psych meds drove my son crazy Salon Life

May 21, 2007

That's quite a story. It could be any one of us, or anyone we know, at any

time.

A doctor driven by greed is a heinous thing. But, what if they believed?

Or were too overwhelmingly busy to do their own research?

I read a couple of the posts following the article, and agree with the one

that mentioned heart. If you have a doctor that cannot refer you to

evidence,

or in any way demeans or dismisses your questions and concerns, or

cannot get out of their own way of doing things enough to see you as an

individual.....

run. And always, if time allows, do your own fact-finding first.

Thank God she was led to the solution.

in Ma.

************************************** See what's free at http://www.aol.com.

May 21, 2007

Yuka,

I just read the whole thing and forwarded it to some friends. Wow...

(www.chargesyndrome.info)

>

> for those who have time - I found this article deeply moving, and on a

> deep level\ affirming......

>

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 21, 2007

Yuka-

That was so. hmmm. I don't know the word. What a story. It's not a stretch

for any of us to imagine what that family went through. Really makes you

pause before accepting any diagnosis as the truth.

Michele W

Aubrie's mom 9 yrs

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Yuka Persico

Sent: Monday, May 21, 2007 12:33 PM

To: CHARGE

Subject: Psych meds drove my son crazy Salon Life

for those who have time - I found this article deeply moving, and on a deep

level\ affirming......

http://www.salon.

http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

> com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

May 21, 2007

wow Yuka... for once i read something clear through (actually the third time

today)...

i have a similar story about my best friend... but it was an honest mistake

made by a pharmacist... i'm not sure if that makes it more or less

frightening...

anyhow

Cole

>

> Yuka-

>

> That was so. hmmm. I don't know the word. What a story. It's not a stretch

> for any of us to imagine what that family went through. Really makes you

> pause before accepting any diagnosis as the truth.

>

> Michele W

> Aubrie's mom 9 yrs

>

> _____

>

> From: CHARGE [mailto:

> CHARGE ] On Behalf Of

> Yuka Persico

> Sent: Monday, May 21, 2007 12:33 PM

> To: CHARGE

> Subject: Psych meds drove my son crazy Salon Life

>

> for those who have time - I found this article deeply moving, and on a

> deep

> level\ affirming......

>

> http://www.salon.

> <

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

> > com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 21, 2007

Okay, I am a bit freaked out becuase one of my boys is on Risperdal, but

is on Abilify and I am not sure if it has helped him or not. Are any other

CHARGE kids on Abilify and if so, what do you think? Murray

mom to twin Chargers and and wife to Jay

Re: Psych meds drove my son crazy Salon Life

Yuka,

I just read the whole thing and forwarded it to some friends. Wow...

(www.chargesyndrome.info)

>

> for those who have time - I found this article deeply moving, and on a

> deep level\ affirming......

>

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 21, 2007

Oh -

I am so sorry if the article has given you anxiety where perhaps you don't need

to have any. The specific misdiagnosis and mis-treatment was surrounding the

condition of Autistic Catatonia - which according to the article occurs in about

15% of young people with autism, and the concern being brought to light was the

conflict of interest between prescribing physicians and pharmaceutical

companies.

Normally persistently Pollyanna-ish myself, I am uncharacteristically reserved

about accepting too optimistically the intentions of pharmaceutical companies as

it is all too clear that they are primarily concerned with increasing their

financial health and focus mainly on medications which can be given for the

duration of a patient's life after diagnosis.

On a deeper level the article hit home with me on the basis of trusting our

instincts despite what the immediate professionals might say.

I trust your instincts )

Harder still for me has been to listen to my instincts when something which has

previously been working is no longer working, or worse yet, enabling a

problem.....

Please forgive me the article. I never meant to add to your concerns.

Best,

Yuka

Re: Psych meds drove my son crazy Salon Life

Yuka,

I just read the whole thing and forwarded it to some friends. Wow...

(www.chargesyndrome.info)

>

> for those who have time - I found this article deeply moving, and on a

> deep level\ affirming......

>

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 21, 2007

Don't apologize. I think it is important for us to understand these things and

become more aware. I understand where you are coming from also.

As far as anxiety, I think for most of us on this list that is something that

will always be there no matter what we read!!!!

Murray

mom to twin Chargers and and wife to Jay

Re: Psych meds drove my son crazy Salon Life

Oh -

I am so sorry if the article has given you anxiety where perhaps you don't need

to have any. The specific misdiagnosis and mis-treatment was surrounding the

condition of Autistic Catatonia - which according to the article occurs in about

15% of young people with autism, and the concern being brought to light was the

conflict of interest between prescribing physicians and pharmaceutical

companies.

Normally persistently Pollyanna-ish myself, I am uncharacteristically reserved

about accepting too optimistically the intentions of pharmaceutical companies as

it is all too clear that they are primarily concerned with increasing their

financial health and focus mainly on medications which can be given for the

duration of a patient's life after diagnosis.

On a deeper level the article hit home with me on the basis of trusting our

instincts despite what the immediate professionals might say.

I trust your instincts )

Harder still for me has been to listen to my instincts when something which has

previously been working is no longer working, or worse yet, enabling a

problem.....

Please forgive me the article. I never meant to add to your concerns.

Best,

Yuka

Re: Psych meds drove my son crazy Salon Life

Yuka,

I just read the whole thing and forwarded it to some friends. Wow...

(www.chargesyndrome.info)

>

> for those who have time - I found this article deeply moving, and on a

> deep level\ affirming......

>

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 21, 2007

Don't apologize. I think it is important for us to understand these things and

become more aware. I understand where you are coming from also.

As far as anxiety, I think for most of us on this list that is something that

will always be there no matter what we read!!!!

Murray

mom to twin Chargers and and wife to Jay

Re: Psych meds drove my son crazy Salon Life

Oh -

I am so sorry if the article has given you anxiety where perhaps you don't need

to have any. The specific misdiagnosis and mis-treatment was surrounding the

condition of Autistic Catatonia - which according to the article occurs in about

15% of young people with autism, and the concern being brought to light was the

conflict of interest between prescribing physicians and pharmaceutical

companies.

Normally persistently Pollyanna-ish myself, I am uncharacteristically reserved

about accepting too optimistically the intentions of pharmaceutical companies as

it is all too clear that they are primarily concerned with increasing their

financial health and focus mainly on medications which can be given for the

duration of a patient's life after diagnosis.

On a deeper level the article hit home with me on the basis of trusting our

instincts despite what the immediate professionals might say.

I trust your instincts )

Harder still for me has been to listen to my instincts when something which has

previously been working is no longer working, or worse yet, enabling a

problem.....

Please forgive me the article. I never meant to add to your concerns.

Best,

Yuka

Re: Psych meds drove my son crazy Salon Life

Yuka,

I just read the whole thing and forwarded it to some friends. Wow...

(www.chargesyndrome.info)

>

> for those who have time - I found this article deeply moving, and on a

> deep level\ affirming......

>

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 21, 2007

Yuka (and )

I thought the article was interesting and thoughtful look at one family's

experience (clearly written by a very articulate mother!). I also forwarded it

to several people. I can imagine that it could cause quite a stir if you

have/are on the drug discussed. But, as you said Yuka, the point was related to

the conflict of interest and the growing number of physcians who seem to work

for the pharmaceutical companies.

, I would take comfort in the fact that your son has been doing ok (or at

least status quo) and has not deteriorated as this boy did. I don't know the

whole story, of course, but it sounds like this young man's condition, Autistic

Catatonia, is very different and fairly uncommon. And armed with this bit of

information, perhaps your son's prescribing physician can help you sort it out

so you feel better and understand your son's need while making the right

decisions about medications. Good luck and keep us posted. Oh, and my guess,

there will be others who will also report their kids medications and probably

others are on the same med.

pam

Re: Psych meds drove my son crazy Salon Life

Oh -

I am so sorry if the article has given you anxiety where perhaps you don't need

to have any. The specific misdiagnosis and mis-treatment was surrounding the

condition of Autistic Catatonia - which according to the article occurs in about

15% of young people with autism, and the concern being brought to light was the

conflict of interest between prescribing physicians and pharmaceutical

companies.

Normally persistently Pollyanna-ish myself, I am uncharacteristically reserved

about accepting too optimistically the intentions of pharmaceutical companies as

it is all too clear that they are primarily concerned with increasing their

financial health and focus mainly on medications which can be given for the

duration of a patient's life after diagnosis.

On a deeper level the article hit home with me on the basis of trusting our

instincts despite what the immediate professionals might say.

I trust your instincts )

Harder still for me has been to listen to my instincts when something which has

previously been working is no longer working, or worse yet, enabling a

problem.....

Please forgive me the article. I never meant to add to your concerns.

Best,

Yuka

Re: Psych meds drove my son crazy Salon Life

Yuka,

I just read the whole thing and forwarded it to some friends. Wow...

(www.chargesyndrome.info)

>

> for those who have time - I found this article deeply moving, and on a

> deep level\ affirming......

>

> http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index2.html

>

May 22, 2007

Try as I may I just can't open the article. My computer is blocking it.

Can someone copy and past it in their mail? Or is it too long?

Although I can't read it I do get the gist of the article. While being

extremely cautious of giving meds and even more cautious about trusting

physicians I do have to add that Patty could not survive in this world without

her

meds. She's on Risperdal for tics, called tourettes. We've tried just about

everything, including behavioral therapy and nutritional aspects of life with

not luck. As Patty's tics are embarrassing and socially isolating she

absolutely needs that med.

As for anxiety, OCD and ADD hers can be extreme - for her. Yet her symptoms

go as misunderstood. It seems more like negative behaviors, including

arguing about a topic. We have tried different behavioral approaches including

relaxation techniques. Again we tried everything. We went from doctor to

doctor until we found one that is good for Patty and understands the impact of

CHARGE on her system. We started her on Strattera which changed her so

negatively I couldn't even tell she was Patty. It was absolutely horrible.

This

was a med I should have done more homework on. Still we had to find a way to

lesson her anxiety. We started her on Celexa.. It was like a miracle med.

I got back my joyful, compassionate and calm Patty. Again she just can not

live without it though we've tried. With her meds along with therapy Patty

came home in her soul. She's able to focus on life and be one in this world.

I am not writing to argue with anyone about meds. Actually I feel that

should be the last resort. I just get worried that some never accept meds. I

do

not believe in meds first and only. Try all you can. Every child is

different and reacts differently. I applaud those who are able to go the Psych

behavioral route which works. But that got Patty only halfway there.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

************************************** See what's free at http://www.aol.com.

May 22, 2007

Bonnie,

Patty is very fortunate to have you for a mother....

>

> Try as I may I just can't open the article. My computer is

blocking it.

> Can someone copy and past it in their mail? Or is it too long?

>

> Although I can't read it I do get the gist of the article. While

being

> extremely cautious of giving meds and even more cautious about

trusting

> physicians I do have to add that Patty could not survive in this

world without her

> meds. She's on Risperdal for tics, called tourettes. We've tried

just about

> everything, including behavioral therapy and nutritional aspects

of life with

> not luck. As Patty's tics are embarrassing and socially isolating

she

> absolutely needs that med.

>

> As for anxiety, OCD and ADD hers can be extreme - for her. Yet

her symptoms

> go as misunderstood. It seems more like negative behaviors,

including

> arguing about a topic. We have tried different behavioral

approaches including

> relaxation techniques. Again we tried everything. We went from

doctor to

> doctor until we found one that is good for Patty and understands

the impact of

> CHARGE on her system. We started her on Strattera which changed

her so

> negatively I couldn't even tell she was Patty. It was absolutely

horrible. This

> was a med I should have done more homework on. Still we had to

find a way to

> lesson her anxiety. We started her on Celexa.. It was like a

miracle med.

> I got back my joyful, compassionate and calm Patty. Again she

just can not

> live without it though we've tried. With her meds along with

therapy Patty

> came home in her soul. She's able to focus on life and be one in

this world.

>

> I am not writing to argue with anyone about meds. Actually I feel

that

> should be the last resort. I just get worried that some never

accept meds. I do

> not believe in meds first and only. Try all you can. Every child

is

> different and reacts differently. I applaud those who are able to

go the Psych

> behavioral route which works. But that got Patty only halfway

there.

>

> Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

>

> ************************************** See what's free at

http://www.aol.com.

>

May 22, 2007

Bonnie,

I am right there with you. First we tried everything behaviorally, then

tried meds at first very reluctantly (I had the " not my kid " syndrome), and

are now re-looking into diet and supplements but the meds will have to stay

as well, at least for now. I am pursing further some medical issues

has, mainly his stomach. However, has the anxiety, mood swings and

OCD to the extreme as well, and can't function without his meds.

We recently tried to get him off Celexa and increase Wellbutrin. He is on

Depakote which has a bad effect on the Celexa. It was nasty taking him off

so we put him back on half a dose and are weaning him slowly from that. He

is a new kid now. We are " cleaning him out " meaning he is all backed-up in

his GI which I am sure has to be why he also has this terrible irritability

at times. He has been in a much better mood now and is much happier, so are

we.

Anyway, whenever I read your posts I feel as if you are talking about

.

Thanks.

Debbie Matasker

Re: Psych meds drove my son crazy Salon Life

Try as I may I just can't open the article. My computer is blocking it.

Can someone copy and past it in their mail? Or is it too long?

Although I can't read it I do get the gist of the article. While being

extremely cautious of giving meds and even more cautious about trusting

physicians I do have to add that Patty could not survive in this world

without her

meds. She's on Risperdal for tics, called tourettes. We've tried just about

everything, including behavioral therapy and nutritional aspects of life

with

not luck. As Patty's tics are embarrassing and socially isolating she

absolutely needs that med.

As for anxiety, OCD and ADD hers can be extreme - for her. Yet her symptoms

go as misunderstood. It seems more like negative behaviors, including

arguing about a topic. We have tried different behavioral approaches

including

relaxation techniques. Again we tried everything. We went from doctor to

doctor until we found one that is good for Patty and understands the impact

of

CHARGE on her system. We started her on Strattera which changed her so

negatively I couldn't even tell she was Patty. It was absolutely horrible.

This

was a med I should have done more homework on. Still we had to find a way to

lesson her anxiety. We started her on Celexa.. It was like a miracle med.

I got back my joyful, compassionate and calm Patty. Again she just can not

live without it though we've tried. With her meds along with therapy Patty

came home in her soul. She's able to focus on life and be one in this world.

I am not writing to argue with anyone about meds. Actually I feel that

should be the last resort. I just get worried that some never accept meds. I

do

not believe in meds first and only. Try all you can. Every child is

different and reacts differently. I applaud those who are able to go the

Psych

behavioral route which works. But that got Patty only halfway there.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

************************************** See what's free at http://www.aol.

http://www.aol.com.> com.

May 22, 2007

Debbie,

Thanks for that. I wasn't sure if sending that post was a good idea. I'm

glad it helped in knowing you aren't alone. So often I read about or from

others and it's like reading about our lives here. Isn't life interesting?!

By the way, how old is ? When the children are growing it's hard to

keep the med dosage working and under control. Add puberty to that (or lack

of puberty) and there's a whole new can of beans. Now that Patty's older

things have leveled out. We used to do that change the amount of med game

depending on her symptoms and changing physical needs. Living life is easier

for

her to do now.

I also have to add that reducing stressors reduces many of those visible and

invisible behaviors. That is the biggest and best intervention we can ever

do for her. See it's not a take a med to be fixed game. There's just so

much more to it and so much more to CHARGE.

I hope you get that " stomach " under control. That certainly does have tons

to do with irritability.

I wish you all good things.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

************************************** See what's free at http://www.aol.com.

May 22, 2007

Yuka,

Thanks for sending that. It sure was a sad read. I think we've all learned

that doctors aren't superhero's who know it all. We learn that early on

when we have children who have CHARGE. Sometimes people, especially our

children, have to struggle through intense hardships at the hands of those who

are

supposed to help. Sad thing is that I've learned it usually isn't intentional

at all. People doing the harm actually think they are doing the right and

we're wrong. How I feel for that family.

I'm saddened at what has happened to this young man and family but rejoiced

when I read the ending. There are happy endings sometimes.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

************************************** See what's free at http://www.aol.com.

May 22, 2007

Bonnie,

is 10 now. They are starting to assess him for growth hormone.

Fun. We do so much to reduce the stress for . He has a very rigid

behavior plan at school and at home and a schedule. We are always planning

things around him and thinking ahead to avoid those horrible moments.. you

know. Yes, I agree about it being so much more. For us we are still

learning but we have the benefit of people like you who have already done

it!

The meds alone never worked without the behavior plan. But, I am very

hopefull that once his GI symptoms are better controlled he will be better

all around.

Debbie