Re: Let down by doctors

July 23, 2006

In a message dated 7/23/2006 12:09:03 A.M. Eastern Standard Time,

tamara_naranjo@... writes:

He jeopardized 's life, however, by

disregarding serious side effects and not making time for timely

checkups. I feel that I need to warn

people.................................. My

husband says I should send a copy to our insurance company. Any

suggestions?

Tamara -

Yes! I found a list of state licensing/medical boards & on the AMA website.

This is where you want to address your complaint. I agree with your

husband as well - definitely copy them on your letter, if for no other reason

but

to inform them so they can reevaluate whether or not this doctor should be a

part of their provider list.

Here is the website - find your state & write that letter. Who knows how

many other people went through the same as you have with this doctor & just

never bothered to say anything to anyone.

_AMA (Ethics) Complete state information_

(http://www.ama-assn.org/ama/pub/category/13365.html)

Good luck Tamara!

LT

July 23, 2006

Tamara, wow, I am so sorry to hear of your experiences. I assume

that you are seeing a new pdoc at MGH soon?

Was westwood able to help him the second time around, did they do

any better? Hang in there, It will get better!

>

> came home from the hospital yesterday, his second time

> there in 6 weeks. Both times, he was hospitalized after becoming

> suicidal on an SSRI. It's possible that his main problem may be

> bipolar disorder. Thankfully, he has an appt. on Tuesday with a

new

> p-doc.

>

> His former p-doc put his life in danger. For weeks he attributed

> 's scary behavioral side effects to anxiety. At the

last

> appt., he instructed me to double the 20 mg. of celexa to 40 mg.

then

> follow up with him at his next available appt. – 5 weeks later

(!).

> The previous visit, after ran from us twice, he increased

his

> risperdol. For a while, the higher dose of risperdol made the

> behaviors a little less intense and frequent. From the beginning,

I

> knew it was the celexa that was causing him to become increasingly

> agitated, out of control and always on the edge of a meltdown. He

> had disturbing episodes of disinhibition and strange fits where he

> would say nonsense syllables and spit. A few times he complained

> that the sound of people talking sounded like a foreign language

or

> nonsense because he had so much noise in his head. His meltdowns

> were always followed by desperation, where he would cry and yell

that

> he's a rotten person for behaving so badly, he hates his life and

he

> wants to die.

>

> My therapist agreed to manage his meds until we found a new p-

doc.

> By the time she saw she was so disturbed and concerned for

his

> safety that she thought he should be hospitalized while getting

off

> of celexa. She felt that because he was so impulsive, he

shouldn't

> be more than arm's length from me while tapering off the 20 mg.

> celexa in 5 mg. increments every 4 days. The first 2 days were

> awful. The second night she called and urged me to take him to

the

> ER, but I resisted. The next day, however, his behavior escalated

to

> the point where he said he would kill himself. I was so afraid of

> how he would react to having to go back to the hospital that I

gave

> him something to help him fall asleep, then, at my therapists

urging,

> I called the police for help getting him there. He calmly went

with

> the paramedics in the ambulance and he waited fairly calmly in the

> ER. When he found out that he would have to be admitted to the

> children's unit again, he freaked out – screaming, punching the

bed

> and walls and yelling " what did I do? " " I just want to go home "

and

> that he would rather kill himself than go back there. That was

one

> of the saddest days of my life.

>

> What I don't understand is how my therapist recognized a child in

> danger of hurting himself while the other doctor thought nothing

of

> his behavior. My therapist said that if we hadn't brought him to

the

> ER that day, she would have been obligated to call the police or

DSS

> because she was afraid we couldn't keep him safe.

>

> Another example of the p-doc's irresponsible med management for

kids

> is how he handled 's side effects from prozac. After 2

> weeks of activation-type side effects – agitation, bad behavior,

> etc., he started having dizzy spells, intense anxiety and panic,

> worsening OCD thoughts and noises and sounds in his head. The p-

doc

> is only in once a week and he has no voice mail. When someone

from

> the practice called me back 8 hours later, I was told that the

dose

> (10 mg.) was much too small to cause any side effects and anxiety

> rather than prozac was the cause of his symptoms. If I wanted to

> take him off of it, I should do it cold turkey and send him to

> school. That was the first day of 6 weeks of missed school.

>

> The former p-doc has a great reputation. He apparently is great

with

> kids who have ADHD. He jeopardized 's life, however,

by

> disregarding serious side effects and not making time for timely

> checkups. I feel that I need to warn people. I want the doctor

to

> know that he failed and that he could be responsible

for

> another child committing suicide. I also want to tell parents

that

> they need to trust their gut and not believe everything doctors

say.

> I'll start by sending a letter to the p-doc and his practice. My

> husband says I should send a copy to our insurance company. Any

> suggestions?

>

> Thanks for reading this long e-mail.

>

> Tamara

>

July 23, 2006

Tamara,

I feel for you ,and have been in your shoes. This sadly seems to be the

" norm " . I'm afraid I may be heading for that path again with my son this time. I

have been trying to fight this system for years with these " Unknowlegable "

supposed child psychiatrists.My daughter is 9 and has been on 23 different med

combinations with 2 hospitalizations and 3 partial hospitalizations, mainly

because they couldn't get it right!.

I have tried writing letters to the hospitals and to representatives, but have

never gotten any responses. There seems to be only power in numbers.

If you or your husband or anyone else out there knows how we can stop all

this, I'll be right behind you to do what I can. hugs!

Judy

mom to Brittany-11-NT -going into 6th gr-high honor student

-Brittany's twin-3-29-95--4-7-95

-9-bp,ocd,odd, 50 mg seroquel 75mg trazadone 75mg zoloft going into reg

5th gr class-504plan

iel 4-ocd, speech problem-going into kindergarten-speech therapy, 2.5mg

prozac

July 23, 2006

Tamara,

I feel for you ,and have been in your shoes. This sadly seems to be the

" norm " . I'm afraid I may be heading for that path again with my son this time. I

have been trying to fight this system for years with these " Unknowlegable "

supposed child psychiatrists.My daughter is 9 and has been on 23 different med

combinations with 2 hospitalizations and 3 partial hospitalizations, mainly

because they couldn't get it right!.

I have tried writing letters to the hospitals and to representatives, but have

never gotten any responses. There seems to be only power in numbers.

If you or your husband or anyone else out there knows how we can stop all

this, I'll be right behind you to do what I can. hugs!

Judy

mom to Brittany-11-NT -going into 6th gr-high honor student

-Brittany's twin-3-29-95--4-7-95

-9-bp,ocd,odd, 50 mg seroquel 75mg trazadone 75mg zoloft going into reg

5th gr class-504plan

iel 4-ocd, speech problem-going into kindergarten-speech therapy, 2.5mg

prozac

July 23, 2006

> Yes! I found a list of state licensing/medical boards & on the AMA

website.

> This is where you want to address your complaint. I agree with

your

> husband as well - definitely copy them on your letter, if for no

other reason but

> to inform them so they can reevaluate whether or not this doctor

should be a

> part of their provider list.

LT,

Thank you for the information! I will do what you suggest.

Tamara

July 23, 2006

I wanted to respond to your post. First of all, thanks for sharing what

happened to your son. I think this type of thing is not uncommon even

though it is very unfortunate. I'm very sorry you have had to go through

such a trauma and I truly feel for you. I would like to offer some advice

about what might be helpful to your son in the future. You didn't, as far

as I can see, mention his age, but I assume he is still a minor.

First, there are a couple of really good books you should read which

addresses many of the concerns in your post. The first book is called The

Antidepressant Fact Book by Breggin. The second book is called Your

Drug May be Your Problem(same author). These books address the dark side of

the meds as well as how to safely get off them.

The second thing is that as you look around for a new psychiatrist, it would

be good to have all your sons experiences with meds documented in writing,

make sure the new pdoc understands the importance of " starting low and going

slow " with the meds, that he is sensitive to your concerns about side

ffects, and also it would be very beneficial if the psychiatrist is aware of

and is open to alternatives to meds like lifestyle changes and supplements.

The third thing I suggest that you consider is getting genetic testing for

how your son metabolizes meds. There is a genetic test that is relatively

easy to perform called cytochrome p450 testing(insurance will sometimes pay

for it especially if it is ordered by your doctor). What this test does is

test for certain important enzymes needed to metabolize meds properly. Every

body metabolizes meds differently and that is one major reason why some do

well on certain meds and others don't. People's genes have an important

effect on how much ability they have to safely use and get benefit out of

meds. The enzymes that P450 cytochrome testing tests for are key in the

metabolization of many meds including psychiatric ones. In my opinion, the

more you know about your son's genetic profile in this regard, the better

off you will be. The enzymes usually tested for are 2D6, 2C9, and 2C19.

There are a number of labs in the country that do this testing. The Mayo

lab at Mayo clinic does the testing, but a doctor must order the test. Also,

a company called genelex does it and you can order it directly through them

without your doctor having to order. The website for them is

www.genelex.com . They have a great website that explains everything you

need in order to understand this stuff as well as how to get started. They

also have great customer service if you just want to get your questions

answered or need help getting started.

Best of luck in the future with your son-please keep us posted.

Debbie

Let down by doctors

came home from the hospital yesterday, his second time

there in 6 weeks. Both times, he was hospitalized after becoming

suicidal on an SSRI. It's possible that his main problem may be

bipolar disorder. Thankfully, he has an appt. on Tuesday with a new

p-doc.

His former p-doc put his life in danger. For weeks he attributed

's scary behavioral side effects to anxiety. At the last

appt., he instructed me to double the 20 mg. of celexa to 40 mg. then

follow up with him at his next available appt. - 5 weeks later (!).

The previous visit, after ran from us twice, he increased his

risperdol. For a while, the higher dose of risperdol made the

behaviors a little less intense and frequent. From the beginning, I

knew it was the celexa that was causing him to become increasingly

agitated, out of control and always on the edge of a meltdown. He

had disturbing episodes of disinhibition and strange fits where he

would say nonsense syllables and spit. A few times he complained

that the sound of people talking sounded like a foreign language or

nonsense because he had so much noise in his head. His meltdowns

were always followed by desperation, where he would cry and yell that

he's a rotten person for behaving so badly, he hates his life and he

wants to die.

My therapist agreed to manage his meds until we found a new p-doc.

By the time she saw she was so disturbed and concerned for his

safety that she thought he should be hospitalized while getting off

of celexa. She felt that because he was so impulsive, he shouldn't

be more than arm's length from me while tapering off the 20 mg.

celexa in 5 mg. increments every 4 days. The first 2 days were

awful. The second night she called and urged me to take him to the

ER, but I resisted. The next day, however, his behavior escalated to

the point where he said he would kill himself. I was so afraid of

how he would react to having to go back to the hospital that I gave

him something to help him fall asleep, then, at my therapists urging,

I called the police for help getting him there. He calmly went with

the paramedics in the ambulance and he waited fairly calmly in the

ER. When he found out that he would have to be admitted to the

children's unit again, he freaked out - screaming, punching the bed

and walls and yelling " what did I do? " " I just want to go home " and

that he would rather kill himself than go back there. That was one

of the saddest days of my life.

What I don't understand is how my therapist recognized a child in

danger of hurting himself while the other doctor thought nothing of

his behavior. My therapist said that if we hadn't brought him to the

ER that day, she would have been obligated to call the police or DSS

because she was afraid we couldn't keep him safe.

Another example of the p-doc's irresponsible med management for kids

is how he handled 's side effects from prozac. After 2

weeks of activation-type side effects - agitation, bad behavior,

etc., he started having dizzy spells, intense anxiety and panic,

worsening OCD thoughts and noises and sounds in his head. The p-doc

is only in once a week and he has no voice mail. When someone from

the practice called me back 8 hours later, I was told that the dose

(10 mg.) was much too small to cause any side effects and anxiety

rather than prozac was the cause of his symptoms. If I wanted to

take him off of it, I should do it cold turkey and send him to

school. That was the first day of 6 weeks of missed school.

The former p-doc has a great reputation. He apparently is great with

kids who have ADHD. He jeopardized 's life, however, by

disregarding serious side effects and not making time for timely

checkups. I feel that I need to warn people. I want the doctor to

know that he failed and that he could be responsible for

another child committing suicide. I also want to tell parents that

they need to trust their gut and not believe everything doctors say.

I'll start by sending a letter to the p-doc and his practice. My

husband says I should send a copy to our insurance company. Any

suggestions?

Thanks for reading this long e-mail.

Tamara

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July 23, 2006

> The third thing I suggest that you consider is getting genetic

testing for

> how your son metabolizes meds. There is a genetic test that is

relatively

> easy to perform called cytochrome p450 testing(insurance will

sometimes pay

Hi Debbie,

Thank you for your support and advice. is 10 years old. On

someone's suggestion here a few weeks ago, I've been keeping a

thorough timeline of his reactions to meds and a separate, condensed

timeline with just dates & dosages. I'm going to drop it off at the

new p-doc's office before his 1st appt. on Tuesday.

I think I read that the problem metabolizing meds effects something

like 5% of children. A couple of questions: 1) if he does have

difficulty metabolizing certain meds, does finding that out just let

the doctor know to go slowly with meds, or would he be able to

actually determine, in advance, which meds would be more easily

tolerated? 2) would the testing indicate other conditions that could

effect his ability to get insurance coverage in the future, or would

they just test for that specific condition?

I will look for the books, though I have a feeling I'll be afraid to

have him on any medication after reading about them.

Tamara

July 23, 2006

I had the same experience with my son (7yrs old). He was suicidal on

2 different SSRI's and a combination of drugs did not help him either.

The doctor keep saying that he wasn't convinced that it was a side

effect of the meds. I came to the realization that for us nothing

could be worse than suicide and so when the doctor failed to return my

calls, I took him off the meds. The doctor explained that he was in

remission and I didn't believe that for a second because he went into

" remission " in 1 week with no intervention outside my discontinuing

the meds. His therapist was not much better. SHe went away for the

summer and gave us no work to do or any direction in the midst of

developing an IEP and 504 plan.

I found a CBT group and got a second psychiatric opinion. I have

pursued a suspected developmental disorder that might explain some of

his anxiety. I vowed that I will do whatever I have to to avoid meds.

Your insurance company probably will not be interested to hear your

allegations about the doctor unless fraud is suspected. The state

board of medical examiners would be the place to report these issues

if you like.

Just wanted to tell you that I share your frustration and pain. I

hope things get better soon.

Bonnie

>

> came home from the hospital yesterday, his second time

> there in 6 weeks. Both times, he was hospitalized after becoming

> suicidal on an SSRI. It's possible that his main problem may be

> bipolar disorder. Thankfully, he has an appt. on Tuesday with a new

> p-doc.

>

> His former p-doc put his life in danger. For weeks he attributed

> 's scary behavioral side effects to anxiety. At the last

> appt., he instructed me to double the 20 mg. of celexa to 40 mg. then

> follow up with him at his next available appt. – 5 weeks later (!).

> The previous visit, after ran from us twice, he increased his

> risperdol. For a while, the higher dose of risperdol made the

> behaviors a little less intense and frequent. From the beginning, I

> knew it was the celexa that was causing him to become increasingly

> agitated, out of control and always on the edge of a meltdown. He

> had disturbing episodes of disinhibition and strange fits where he

> would say nonsense syllables and spit. A few times he complained

> that the sound of people talking sounded like a foreign language or

> nonsense because he had so much noise in his head. His meltdowns

> were always followed by desperation, where he would cry and yell that

> he's a rotten person for behaving so badly, he hates his life and he

> wants to die.

>

> My therapist agreed to manage his meds until we found a new p-doc.

> By the time she saw she was so disturbed and concerned for his

> safety that she thought he should be hospitalized while getting off

> of celexa. She felt that because he was so impulsive, he shouldn't

> be more than arm's length from me while tapering off the 20 mg.

> celexa in 5 mg. increments every 4 days. The first 2 days were

> awful. The second night she called and urged me to take him to the

> ER, but I resisted. The next day, however, his behavior escalated to

> the point where he said he would kill himself. I was so afraid of

> how he would react to having to go back to the hospital that I gave

> him something to help him fall asleep, then, at my therapists urging,

> I called the police for help getting him there. He calmly went with

> the paramedics in the ambulance and he waited fairly calmly in the

> ER. When he found out that he would have to be admitted to the

> children's unit again, he freaked out – screaming, punching the bed

> and walls and yelling " what did I do? " " I just want to go home " and

> that he would rather kill himself than go back there. That was one

> of the saddest days of my life.

>

> What I don't understand is how my therapist recognized a child in

> danger of hurting himself while the other doctor thought nothing of

> his behavior. My therapist said that if we hadn't brought him to the

> ER that day, she would have been obligated to call the police or DSS

> because she was afraid we couldn't keep him safe.

>

> Another example of the p-doc's irresponsible med management for kids

> is how he handled 's side effects from prozac. After 2

> weeks of activation-type side effects – agitation, bad behavior,

> etc., he started having dizzy spells, intense anxiety and panic,

> worsening OCD thoughts and noises and sounds in his head. The p-doc

> is only in once a week and he has no voice mail. When someone from

> the practice called me back 8 hours later, I was told that the dose

> (10 mg.) was much too small to cause any side effects and anxiety

> rather than prozac was the cause of his symptoms. If I wanted to

> take him off of it, I should do it cold turkey and send him to

> school. That was the first day of 6 weeks of missed school.

>

> The former p-doc has a great reputation. He apparently is great with

> kids who have ADHD. He jeopardized 's life, however, by

> disregarding serious side effects and not making time for timely

> checkups. I feel that I need to warn people. I want the doctor to

> know that he failed and that he could be responsible for

> another child committing suicide. I also want to tell parents that

> they need to trust their gut and not believe everything doctors say.

> I'll start by sending a letter to the p-doc and his practice. My

> husband says I should send a copy to our insurance company. Any

> suggestions?

>

> Thanks for reading this long e-mail.

>

> Tamara

>

July 23, 2006

After reading so many stories, I'm very wary of meds for my 7 year old. And, we

are determined to explore all other options, should it become necessary for him.

So far, he seems to be doing better with CBT and ERP, but who knows if this is

truly better or a waning period.

I'm so grateful for the information here in this group, as well as the support.

I feel so much for your families, almost like I know them. And it is upsetting

to read about setbacks and difficulties. But, great to hear about triumphs. I

just wanted to mention that. It's so hard to talk to friends and almost

impossible to talk to relatives about this. And I truly appreciate this group.

Remember to take care of yourselves too. That is so important. My dh and I have

been really consciously trying to " spoil " each other through these last few

months, while we've gone through the worst of it. Funny, we remember to take

care of others, but leave ourselves out. I used to feel guilty taking time for

me, but not anymore, it's critical

Anywho, back to the topic, I will check out thoroughly any medications before we

try it. It's so hard to know the right things to do. You want to trust your

doctors, but they make mistakes, lots of them. On the positive side, Ben hasn't

said " bad thought " in two days. That is new. So things are looking up for us,

today. Take care all.

mom to Ben 7

July 23, 2006

After reading so many stories, I'm very wary of meds for my 7

year old. And, we are determined to explore all other options, should

it become necessary for him. So far, he seems to be doing better with

CBT and ERP, but who knows if this is truly better or a waning period.

, I know when I joined and read about meds and problems I looked

to alternative options too. We first used inositol powder but then

later tried Celexa. I was " on the alert " when he went on Celexa as to

any changes, suicidal thoughts, etc. He did well! So I consider us

lucky in that our first SSRI wasn't a bad experience, as others have

had to trial a few and then find one that helps without any bad side

effects. He stayed on Celexa all through 9th and 10th grades.

If your son and family aren't in too much distress then, of course,

therapy alone may well work. Even when on meds, therapy is the *key*

to overcoming OCD and eventually trying to be " med free " , meds don't

cure it. And many recommend trying therapy first, just that some are

so in distress by the time they seek help that medication is needed to

lower anxiety/OCD for therapy to begin to be effective.

Nothing you don't know, I know, but for all the posts you read about

the bad times, many who do well don't bother posting the good results

and medication has given so many their lives back!

I myself know that if I trialed a med for that if he had any

behavioral side effects that seemed harmful to himself or others or

sunk into depression or actions or some type thing, I'd be wanting to

go ahead and take him off certainly! Especially suicidal or violent!

And I would take him off if he had those results. But the next med

might not have the same problem.

But most doctors/mental health professionals know that a med can

cause initial side effects which usually pass, and want the patient to

try it for a month at least, which many take 8 weeks to even take

effect so the docs prefer an 8 week trial. The thing is, my thoughts,

that they don't always realize just how serious things may be in the

home and might tend to shrug parent comments off, since docs are used

to initial effects, etc., comments on agitation or sleepiness, etc.

I've heard many " sighs " where I work (mental health center) because

parents stop medication for their kids too soon (within a week or two)

and then still want the psychiatrist to " fix " their kid due to their

having bad behaviors and/or want their child out of the home, etc.,

and what psychs do is prescribe medication. (I'm thinking of the

children's dept here, where in our county it seems OCD is very rare

for treatment so this isn't OCD related behaviors) I will say the

therapists and other workers do wonderful jobs with the kids/teens,

some good programs.

Anyway, just some rambling thoughts! Will be glad to share our

inositol powder experience with you. It worked well for thru

middle school. He recently went back on it due to bad thoughts and

other returning OCD, but he's not sure it's helping this time. It did

take quite a few weeks to really kick in and help him last time too

though, but others have had quicker success. Then some have had no

success with it either. Might not help at all this time, will

just have to wait and see. He's managing OK right now overall,

compared to how bad off he was a few months ago.

July 23, 2006

Thanks

I've thought about the inositol after reading about it here. If we go through

another bad period, I will try that first. Luckily, we were already homeschool,

always had planned to, so we don't have many of the school issues we might have

otherwise. Any info on the inositol would be great. Thank you.