advice please

[Guest guest]

Lana,

If the study is on depression, and adolescents, then you should be ok, in

fact, it might be a foot in the door to immediate treatment. That's the

positive side.

Downsides are:

he could get the placebo; he could become worse;

the amount given address's the depression but nothing else;

the doctor conducting the study may not know enough about ocd;

In my personal opinion, I would skip this one and wait for a more accurate

diagnosis for . Since some meds will make him worse if he is bi-polar,

you want to precede with caution. Once he's stable, and your looking for a

change, then maybe it is worth considering.

You mention that he was suicidal the other night. What actions did you

take? Have you been told by a professional how to assess the likelihood that

he will try something? Always consider safety first!!

Again, this is my opinion... wendy in canada

=============================================================

> told me his thoughts about suicide the other night. Never

>heard them before or even thought we were at that point. So here's my

>question...There is a clinical study here in GA for depressed -

>suicidal kids. The drug they are trying is Celexa, apparently its

>approved for adults not kids. It's 9 visits over 7 weeks and the

>meds. Has anyone participated in a study like this? I plan to bring

>it up with the Psychiatrist on Friday. What are some

>conerns\questions I should be asking?

_________________________________________________________________________

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[Guest guest]

HI Lana:

It is a good idea to pay close attention and take action when our kids

mention self-harm. Celexa is a relatively new anti-depressant in the US

and it is also effective in treating OCD. There is good information on the

NAMI web site about dealing with suicidal ideation.

Before making any medication changes you might want to get something

definite about comorbidities with OCD. Paxil at 10 mg is rather a low

dosage for OCD and may also be too low to do much for depression. If you

are dealing with possible bipolar you might need to look at a mood

stablizer.

Eligibility for a research protocol can be limited by having other comorbid

disorders. The plus of being in a research protocol is that you are

tracked more consistently, at least while the protocol is under study, than

patients who are not in research protocols. You may also have access to

professionals with greater skills in differential diagnosis as typically

researchers are pretty selective about who is accepted in a study to reduce

confounding variables.

Do you know why the psychologist is considering ADHD and bipolar? This

could be BSEs from the medication if is just beginning Paxil. If

there are symptoms of some duration that indicate this you should discuss

the possible comorbidities with the researcher to find out of it is a good

idea for to participate in the study. These studies do provide

important scientific evidence about new medications which other patients

and their families will benefit from. I am very grateful to the patients

and researchers who were involved in the studies that resulted in the

evidence-based treatments like CBT with E & RP and SSRIs which have helped my

son.

Hope this helps, aloha, Kathy (H)

kathyh@...

At 10:13 PM 11/01/2000 +0000, you wrote:

> told me his thoughts about suicide the other night. Never

>heard them before or even thought we were at that point. So here's my

>question...There is a clinical study here in GA for depressed -

>suicidal kids. The drug they are trying is Celexa, apparently its

>approved for adults not kids. It's 9 visits over 7 weeks and the

>meds. Has anyone participated in a study like this? I plan to bring

>it up with the Psychiatrist on Friday. What are some

>conerns\questions I should be asking? (currently on Paxil 10 mg with

>no improvement-Psychiatrist diagnosed us with OCD and Psychologist

>agrees OCD but added ADHD and possible bipolar- we will start tests

>to dismiss or confirm the ADHD and bipolar possibilities)

>Anything you have to say or advise is welcome, please help me open my

>eyes is this a good idea or not?

[Guest guest]

Would any of the drug trial participants be receiving placebo? If

so, I would question whether or not to risk not doing anything when

seems unstable to this degree.

Take care, Stephany

[Guest guest]

HI:

I would like to add that if there is treatment arm with a placebo be very

suspicious about participating in the study. IF there is a comparison

between Celexa and another antidepressant or with CBT or with supportive

therapy, IMO that would be okay. Having a cohort not taking any treatment

for a condition as serious and potentially life threatening as depression

would be tantamount to medical incompetence.

Good luck, take care, aloha, Kathy (H)

kathyh@...

At 11:03 PM 11/01/2000 +0000, you wrote:

>Would any of the drug trial participants be receiving placebo? If

>so, I would question whether or not to risk not doing anything when

> seems unstable to this degree.

>

>Take care, Stephany

[Guest guest]

Lana in GA wrote:

>....He said he wanted to kill himself because he is ugly

and stupid. I told him he is very smart that he knew this

wasnt a good thought and he came to me for help. Then I

held him and let him cry told him all the positive things

about him and how much we all loved him. Was this a good

>way to handle it?<

Lana, YES!

When our kids feel so rotten, they cant really absorb a lot of

information. Keeping things simple, reminding him that you love him, that he

is better at something than others, is about all he could take in.

If the situation comes up again, you can also remind him that ocd, or any

illness or disorder, is not his fault, or yours. Externalize these feelings

- allow him to be angry at the way his life is turning out, while

reinforcing that things will change when he takes charge of 'those nasty

thoughts' and impulses. His job is to take control and you will help him do

this.

>I am having so much difficulty with his Dr not returning

my calls I will complain on Friday at the appt. To me this

> was a definite emergency and I couldnt reach him!<

One of my favourite sayings is: BE AN EDUCATED CONSUMER! You are paying for

the doc's time, remind him that you are expecting his full attention, not

just a piece. My experiences have been that when I attend an appoitment with

a list of questions, and what I goals I expect, things are easier. I made it

clear to the kids P-doc that we are a team - he takes care of prescriptions,

and since I live here and he doesnt, I will report progress with ERP, etc.

We regularly discuss things as educated adults - and this began long before

I trained at the BTI!

>As far as the trial research Park has already been approved,

they said no placebo invovled and are sending me an info packet,

we will carefully read through that and can always decline.<

Like I said above - read the small print, and consult with the doc.

Take care, you are doing a great job! wendy, in canada

_________________________________________________________________________

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[Guest guest]

Hi everyone,

I haven't written in a while but I've been reading all your posts. Things

around here have not been going well. Since school started in September,

has been absent 16 times and is plagued with different physical

illnesses....stomach problems, sinus infections, ear infections, headaches,

severe bloody noses and fevers. We are now in the process of taking him to a

gastroenterologist for an evaluation for irritable bowel syndrome. Added on

to this is his grandmother's illness...she is in hospice care and has

been visiting with her frequently. It is the first time he has had to deal

with the prospect of a death in the family. He seems to be handling this ok

on the surface but his stress levels in general and his ability to cope with

everyday life, such as going to school and being able to concentrate is

suffering.

We are in the process of reevaluating his medication. He is now on 60 mg. of

Prozac and has been on this dose since he was 11. He is now 15. Up until

now he seemed able to cope ok on this dose. Our current psychiatrist is

disengaging from his practice...he is an older man and has become ill.....and

has not been helpful in this situation. We have an appointment with a new

psychiatrist on Dec. 5....and I'm wondering if: 1. the prozac should be

upped; 2. we should try another SSRI; 3. something can be given with the

prozac to help reduce his stress level(is there such a med out there?) 4.

can dosages of meds be upped only during times of increased stress and

decreased as needed..I remember Dr. Grayson saying something about this in

one of his seminars at the conference. I would really appreciate any

suggestions/advice on this.

In the meantime, I'm trying to handle the problems/workload that have come

into play with the school. I'm trying to set up another CSE meeting to

address issues that were never followed through since our last meeting and

also problems in content areas such as Math which are causing to avoid

doing any math and recently avoiding school. On the positive side, his

social life is going well and he is teaching himself the keyboard and forming

a band with some friends....he just saved up enough money to buy a

synthesizer and got one on Tuesday.

Take care all, bye for now,

Noelle

[Guest guest]

Lana: My son is much younger than yours but we have

had similar diagnosis and symptoms at times with the

exception of the abuse issue and talking a mile a

minute. Paxil can be very energizing as well as

sedating (too energizing in my sons case!) You

probably are already aware too that SSRI's can make

bipolar worse. This is one reason that I have felt

certain that my son was not bipolar, because he

responds so well to Prozac, and with the exception of

a few months, has been on that medication for 21/2

years.Depression can mimic AD/HD symptoms also - key

is how long has he had these symptoms? Have they been

present since he was in the 5-7 year age group? My son

was younger (2) when the inattentiveness and

hyperactivity was evident! So much of this could be

coexisting also that it becomes at times a real

confusing mess! Are you in an area that you can get

emergency room type help for your son if your

situation warrants it? That is an option that I know

I hate to think about, but I did do it in an effort to

get my sons psychiatrist to evaluate him sooner that

our next appointment! It worked and we were able to

start him on what turned out to be appropriate

medication. Hope this help some - my prayers are with

you at this time.

--- Lana <ocdkids@...> wrote:

> Pschologist is thinking ADHD because of restless

> activity,little

> attention span, not completeing tasks, having to be

> reminded over and

> over again,forgeting things, talks 90 miles a minute

> changing

> subjects, and others. Thinking Bipolar because he

> has drastic mood

> swings and abuse to his brother and a little to

> himself, very non

> emotional at times and then uncontrollable rage. I

> will ask the

> Psychiatrist what he thinks on Friday.

> The other night he said he wanted to get dads gun

> and kill himself.

> (The gun is a rifle that is taken apart and wrapped

> up where he cant

> get to it) He said he wanted to kill himself because

> he is ugly and

> stupid. I told him he is very smart that he knew

> this wasnt a good

> thought and he came to me for help. Then I held him

> and let him cry

> told him all the positive things about him and how

> much we all loved

> him. Was this a good way to handle it? I am having

> so much difficulty

> with his Dr not returning my calls I will complain

> on Friday at the

> appt. To me this was a definite emergency and I

> couldnt reach him!

>

> As far as the trial research Park has already been

> approved, they

> said no placebo invovled and are sending me an info

> packet, we will

> carefully read through that and can always decline.

>

> I agree that he is on a very low dose of Paxil(10mg)

> and that will

> need to be increased. He had such a hard time on

> Zoloft I think we

> are easing him to the correct dose. We have been on

> Paxil for 3 weeks

> and show no improvement.

> Lana in GA

>

>

>

__________________________________________________

[Guest guest]

Hi everyone,

I haven't written in a while but I've been reading all your posts. Things

around here have not been going well. Since school started in September,

has been absent 16 times and is plagued with different physical

illnesses....stomach problems, sinus infections, ear infections, headaches,

severe bloody noses and fevers. We are now in the process of taking him to a

gastroenterologist for an evaluation for irritable bowel syndrome. Added on

to this is his grandmother's illness...she is in hospice care and has

been visiting with her frequently. It is the first time he has had to deal

with the prospect of a death in the family. He seems to be handling this ok

on the surface but his stress levels in general and his ability to cope with

everyday life, such as going to school and being able to concentrate is

suffering.

We are in the process of reevaluating his medication. He is now on 60 mg. of

Prozac and has been on this dose since he was 11. He is now 15. Up until

now he seemed able to cope ok on this dose. Our current psychiatrist is

disengaging from his practice...he is an older man and has become ill.....and

has not been helpful in this situation. We have an appointment with a new

psychiatrist on Dec. 5....and I'm wondering if: 1. the prozac should be

upped; 2. we should try another SSRI; 3. something can be given with the

prozac to help reduce his stress level(is there such a med out there?) 4.

can dosages of meds be upped only during times of increased stress and

decreased as needed..I remember Dr. Grayson saying something about this in

one of his seminars at the conference. I would really appreciate any

suggestions/advice on this.

In the meantime, I'm trying to handle the problems/workload that have come

into play with the school. I'm trying to set up another CSE meeting to

address issues that were never followed through since our last meeting and

also problems in content areas such as Math which are causing to avoid

doing any math and recently avoiding school. On the positive side, his

social life is going well and he is teaching himself the keyboard and forming

a band with some friends....he just saved up enough money to buy a

synthesizer and got one on Tuesday.

Take care all, bye for now,

Noelle

[Guest guest]

Hi Lana:

Thanks for the information. I did not mean to second guess Park's docs,

just was wondering what behaviors were causing difficulty. When Steve

started Paxil he had BSEs to the max. These included unbelievable

restlessness, terrible insomnia, increased obsessions which made him very

irritable, distracted and unable to do much. It had a very activating

effect which took quite a few weeks to adjust to. Steve was also

physically abusive towards his brother and me, throwing metal airplanes and

metal objects at his brother, spitting at me, hitting me, verbal diarrhea

to the max, etc.

I mention this because Steve does not have bipolar but rather unipolar

disorder. I am always on the look out for bipolar symptoms in Steve

because I believe my dad has had cyclothymia for much of his life. However

Steve gets the unipolar stuff from both sides of the family and that seems

much more the case. Once he adjusted to Paxil, the activating effects

disappeared and we saw less of the worsening of symptoms.

Providing reassurance to OCD or possible BDD is a very natural response and

I have done the same with Steve. When he would actively try to kill

himself I would cry and tell him how much I loved him and how unbearable it

would be for me to lose him. What can also help is reminding them that

suicide is a permanent solution to a temporary problem which is very

treatable. Also what you are doing, keeping the lines of communication

open is very important.

If you can negotiate an agreement that no action will be taken about sad

and depressed feelings without communicating them to you first that can

help. Once they learn that depression is treatable that can help, although

there is always a risk so you need to take what they say very seriously. I

hope you will share this with Park's docs. In fact when Steve is suicidal

we call the doc immediately and go on alert. Thanks to SSRIs this has not

happened since his Paxil poop out.

Perhaps you can get the psychiatrist's pager or email for rapid

communication instead of running the gauntlet of their receptionist. Is

Park on the liquid Paxil? When will you be titrating up from 10 mg? Low

and slow is definitely the way to go. Until poop out Paxil was a very

effective medication for Steve. It did take quite a while for him to start

getting benefit from his medication though.

Park is so lucky to have such a caring and concerned mom helping him during

this very difficult time. will remind you to remember to take care

of yourself and I hope you will soon find some time for yourself during

this frantic period. There are many of us on the list who have been in

your shoes and have come out the other side to a much happier family life.

This will happen for your family too. Take care, aloha, Kathy (H)

kathyh@...

At 02:50 PM 11/02/2000 -0000, you wrote:

>Pschologist is thinking ADHD because of restless activity,little

>attention span, not completeing tasks, having to be reminded over and

>over again,forgeting things, talks 90 miles a minute changing

>subjects, and others. Thinking Bipolar because he has drastic mood

>swings and abuse to his brother and a little to himself, very non

>emotional at times and then uncontrollable rage. I will ask the

>Psychiatrist what he thinks on Friday.

>The other night he said he wanted to get dads gun and kill himself.

>(The gun is a rifle that is taken apart and wrapped up where he cant

>get to it) He said he wanted to kill himself because he is ugly and

>stupid. I told him he is very smart that he knew this wasnt a good

>thought and he came to me for help. Then I held him and let him cry

>told him all the positive things about him and how much we all loved

>him. Was this a good way to handle it? I am having so much difficulty

>with his Dr not returning my calls I will complain on Friday at the

>appt. To me this was a definite emergency and I couldnt reach him!

>

>As far as the trial research Park has already been approved, they

>said no placebo invovled and are sending me an info packet, we will

>carefully read through that and can always decline.

>

>I agree that he is on a very low dose of Paxil(10mg) and that will

>need to be increased. He had such a hard time on Zoloft I think we

>are easing him to the correct dose. We have been on Paxil for 3 weeks

>and show no improvement.

>Lana in GA

[Guest guest]

Hi Noelle:

Thanks for the update on " little " . I am sorry to hear of all his

illnesses. Do you think this is connnected to his concern about his

grandmother? Do you feel her illness and it severity might be triggering

any obsessions? My Steve certainly would be coping with this in his

situation as he has experienced a lot of violent obsessions and death

obsessions. It is hard to deal with as these are so painful to us all.

How are you managing yourself Noelle?

re: meds, it certainly sounds like time to review 's current protocol.

Do you think he might be suffering from poop out or just need a temporary

increase due to increased stress? I think that puberty seems to be a

stress all by itself. Another thought I had was that " little " at 15

is much, much bigger than at 11 and the dosage may need to be

increased for this reason alone. If this is his first OCD medication, it

is more likely that a doc will switch to another or up the Prozac dosage

than augment with a new medication, that is if they want to follow the

Expert Consensus Guidelines.

I was not at Dr. Grayson's talk this year but have heard him speak several

times and he is also on the OCD-L from time to time. Generally I have

heard him allude to reducing medication dosages after success with CBT.

Steve's psychiatrist has told Steve that he might be able to take less or

even go off anti-depressants for a while during his life, and then have to

go back on during times of stress. For now with puberty going on I hope

Steve decides to keep taking them for a while........

That is wonderful news about and his music. Does he know that

musical ability and mathematical ability are often correlated? Do you

think he is having trouble with OCD symptoms interfering with his math

ability? Sometimes Steve must do things in threes or go back and redo,

etc. and this can interfere with his math. Other times he is really

wonderful at Math and has even gotten awards for it.

Steve really is anti-school right now and we find we have to be very firm

to keep him at it. Today we had 26 inches of rain in a 24-hour period and

he was very delighted that they closed the schools in our area. He is very

upset that it is back to school again tomorrow!

Take care, aloha, Kathy (H)

kathyh@...

At 11:29 AM 11/02/2000 EST, you wrote:

>Hi everyone,

>I haven't written in a while but I've been reading all your posts. Things

>around here have not been going well. Since school started in September,

> has been absent 16 times and is plagued with different physical

>illnesses....stomach problems, sinus infections, ear infections, headaches,

>severe bloody noses and fevers. We are now in the process of taking him

to a

>gastroenterologist for an evaluation for irritable bowel syndrome. Added on

>to this is his grandmother's illness...she is in hospice care and has

>been visiting with her frequently. It is the first time he has had to deal

>with the prospect of a death in the family. He seems to be handling this ok

>on the surface but his stress levels in general and his ability to cope with

>everyday life, such as going to school and being able to concentrate is

>suffering.

>We are in the process of reevaluating his medication. He is now on 60 mg.

of

>Prozac and has been on this dose since he was 11. He is now 15. Up until

>now he seemed able to cope ok on this dose. Our current psychiatrist is

>disengaging from his practice...he is an older man and has become

ill.....and

>has not been helpful in this situation. We have an appointment with a new

>psychiatrist on Dec. 5....and I'm wondering if: 1. the prozac should be

>upped; 2. we should try another SSRI; 3. something can be given with the

>prozac to help reduce his stress level(is there such a med out there?) 4.

>can dosages of meds be upped only during times of increased stress and

>decreased as needed..I remember Dr. Grayson saying something about this in

>one of his seminars at the conference. I would really appreciate any

>suggestions/advice on this.

>In the meantime, I'm trying to handle the problems/workload that have come

>into play with the school. I'm trying to set up another CSE meeting to

>address issues that were never followed through since our last meeting and

>also problems in content areas such as Math which are causing to avoid

>doing any math and recently avoiding school. On the positive side, his

>social life is going well and he is teaching himself the keyboard and

forming

>a band with some friends....he just saved up enough money to buy a

>synthesizer and got one on Tuesday.

>Take care all, bye for now,

>Noelle

[Guest guest]

Hi Lana Maybe its the paxil, when my son was on it(at a low dose), he became

EXTREMELY depressed. He was running away from the house and climbing on the

roof-to name a few.But once we stopped the paxil, he was'nt doing those things.

Nellie

>

>From: " Lana " <ocdkids@...>

>Date: Wed, 01 Nov 2000 22:13:27 -0000

>egroups

>Subject: advice please

>

> told me his thoughts about suicide the other night. Never

>heard them before or even thought we were at that point. So here's my

>question...There is a clinical study here in GA for depressed -

>suicidal kids. The drug they are trying is Celexa, apparently its

>approved for adults not kids. It's 9 visits over 7 weeks and the

>meds. Has anyone participated in a study like this? I plan to bring

>it up with the Psychiatrist on Friday. What are some

>conerns\questions I should be asking? (currently on Paxil 10 mg with

>no improvement-Psychiatrist diagnosed us with OCD and Psychologist

>agrees OCD but added ADHD and possible bipolar- we will start tests

>to dismiss or confirm the ADHD and bipolar possibilities)

>Anything you have to say or advise is welcome, please help me open my

>eyes is this a good idea or not?

>

>

>

>

>You may subscribe to the OCD-L by emailing listserv@... . In the

body of your message write: subscribe OCD-L your name. You may subscribe to

the Parents of Adults with OCD List at <a

href= " parentsofadultswithOCD " >http://www.egroups.co\

m/group/parentsofadultswithOCD</a> . You may access the files, links, and

archives for our list at <a

href= " " >group\

/</a> . Our list advisors are Tamar Chansky, Ph.D., and Aureen

Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule

Monnens, Gail Pesses, Kathy , Roman, and Jackie Stout.

Subscription issues, problems, or suggestions may be addressed to Louis Harkins,

list owner, at harkins@... .

>

>

>

>

[Guest guest]

Hi Lana Maybe its the paxil, when my son was on it(at a low dose), he became

EXTREMELY depressed. He was running away from the house and climbing on the

roof-to name a few.But once we stopped the paxil, he was'nt doing those things.

Nellie

>

>From: " Lana " <ocdkids@...>

>Date: Wed, 01 Nov 2000 22:13:27 -0000

>egroups

>Subject: advice please

>

> told me his thoughts about suicide the other night. Never

>heard them before or even thought we were at that point. So here's my

>question...There is a clinical study here in GA for depressed -

>suicidal kids. The drug they are trying is Celexa, apparently its

>approved for adults not kids. It's 9 visits over 7 weeks and the

>meds. Has anyone participated in a study like this? I plan to bring

>it up with the Psychiatrist on Friday. What are some

>conerns\questions I should be asking? (currently on Paxil 10 mg with

>no improvement-Psychiatrist diagnosed us with OCD and Psychologist

>agrees OCD but added ADHD and possible bipolar- we will start tests

>to dismiss or confirm the ADHD and bipolar possibilities)

>Anything you have to say or advise is welcome, please help me open my

>eyes is this a good idea or not?

>

>

>

>

>You may subscribe to the OCD-L by emailing listserv@... . In the

body of your message write: subscribe OCD-L your name. You may subscribe to

the Parents of Adults with OCD List at <a

href= " parentsofadultswithOCD " >http://www.egroups.co\

m/group/parentsofadultswithOCD</a> . You may access the files, links, and

archives for our list at <a

href= " " >group\

/</a> . Our list advisors are Tamar Chansky, Ph.D., and Aureen

Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule

Monnens, Gail Pesses, Kathy , Roman, and Jackie Stout.

Subscription issues, problems, or suggestions may be addressed to Louis Harkins,

list owner, at harkins@... .

>

>

>

>

[Guest guest]

Hi KathyH:

I read with interest your description of Steve's BSE's. Our son has similar

behavior. I was wondering what unipolar means. The psychiatrist has ruled

out bipolar but unipolar is a new term I'm not familiar with. I'm always

searching for any info that may lead to any kind of clue to getting our son

help and making him feel better. He suffers from anxiety, OCD and ADD and is

taking 50 mg Luvox daily. We gave up on Zoloft because after 3 Months his

bad behavior returned. He has been on Luvox for at least 6 months with a

recent increase to 50 from 25 mg. The bad behavior seems to have worsened

recently as it is now appearing in school too.

Thanks

NanF

[Guest guest]

Hi KathyH:

I read with interest your description of Steve's BSE's. Our son has similar

behavior. I was wondering what unipolar means. The psychiatrist has ruled

out bipolar but unipolar is a new term I'm not familiar with. I'm always

searching for any info that may lead to any kind of clue to getting our son

help and making him feel better. He suffers from anxiety, OCD and ADD and is

taking 50 mg Luvox daily. We gave up on Zoloft because after 3 Months his

bad behavior returned. He has been on Luvox for at least 6 months with a

recent increase to 50 from 25 mg. The bad behavior seems to have worsened

recently as it is now appearing in school too.

Thanks

NanF

[Guest guest]

Nan:

My son (now 12) had terrible BSE's from Luvox -- not at first, but after a

couple months he became oppositional and aggressive, something he had NEVER

been. He was then placed on Prozac with good results until it pooped out this

spring and we had to switch to Celexa. He also has ADHD, and depression. In

unipolar depression people may suffer from repeated episodes of depression.

However, their mood returns to normal at the end of an episode of depression.

Aiden also takes Risperdal and Wellbutrin as an adjunct to the Celexa. He has a

great deal of anxiety on top of the ocd, and the Risperdal helps to keep him

under better control. The Wellbutrin is to boost the antidepressant effect of

the Celexa. Currently he is not taking anything for the ADHD, although he has

been on Adderall and Ritalin in the past. I think that perhaps the Risperdal

helps with some of the inattentiveness.

As a side note to Noelle: Aiden took 60 mg of Prozac -- our shrink did not want

to put him up any higher due to the greatly increase risk of side effects such

as tremors and stomach problems. That is why we opted to change SSRIs, and

we've been happy with the Celexa.

Jule

[Guest guest]

Nan:

My son (now 12) had terrible BSE's from Luvox -- not at first, but after a

couple months he became oppositional and aggressive, something he had NEVER

been. He was then placed on Prozac with good results until it pooped out this

spring and we had to switch to Celexa. He also has ADHD, and depression. In

unipolar depression people may suffer from repeated episodes of depression.

However, their mood returns to normal at the end of an episode of depression.

Aiden also takes Risperdal and Wellbutrin as an adjunct to the Celexa. He has a

great deal of anxiety on top of the ocd, and the Risperdal helps to keep him

under better control. The Wellbutrin is to boost the antidepressant effect of

the Celexa. Currently he is not taking anything for the ADHD, although he has

been on Adderall and Ritalin in the past. I think that perhaps the Risperdal

helps with some of the inattentiveness.

As a side note to Noelle: Aiden took 60 mg of Prozac -- our shrink did not want

to put him up any higher due to the greatly increase risk of side effects such

as tremors and stomach problems. That is why we opted to change SSRIs, and

we've been happy with the Celexa.

Jule

[Guest guest]

Hi Chickiemom,

I think we have all been where you are at one time or another...whether we

want to admit it or not. The idea of someday having to " place " your child in

an out of home situation is pretty darn scary, no doubt. 's behaviors

worsened at about age 5, I guess. He became more and more self-injurious and

aggressive. It scared us to death. It was all we could do to control him

and all we could think of was what would we do when he was bigger? At the

time, our HMO insurance told us they didn't treat " autism " and referred us to

a mental health provider. He tried several meds to control 's

behavior with not a lot of success. Finally, had a grand mal seizure

at school and I was able to force the insurance company to give us a referral

to a Neurologist. was diagnosed with a seizure disorder and it

turned out that at least part (the worst part at the time) of his behavior

was either due to or exacerbated by the seizures. Once he was on seizure

meds, the behaviors changed dramatically. is almost 14 now and over

the years his behavior has deteriorated a lot. We still battle between

behaviors related to seizure activity and behaviors related to the austism

diagnosis. I guess the bottom line is that no matter what the cause,

doesn't seem to have much control over the behaviors. They just " are " . For

and us, the answer has been medication. He is presently taking two

anti-psychotic drugs as well as two seizure meds. We see a flattening of his

personality for sure, but it is the lesser of two evils compared to the

behaviors if you know what I mean. That isn't to say that his behaviors are

totally under control. He still bites, pinches, scratches, clears tables,

knocks over furniture, etc. but not as much as he did. One more

thing.........people are forever asking me what will we do when is

" older " . I tell them that we will deal with that when the time comes... " one

day at a time " as the saying goes. When was 2 or 3, if someone

would have said that when he was almost 14 and in puberty he would still be

in diapers, I would not have been able to fathom " how " I could deal with it.

But that's where we are, and while it can be a real pain in the butt, it is

certainly manageable. My point is that you can't project how things will be

or how you will feel in the future. You can only deal with the " now " . Good

luck and my prayers are with you. If you would like to talk, please e-mail

me directly.

Terry

Mom to , 13 yrs.

[Guest guest]

In a message dated 1/9/01 1:04:15 AM Eastern Standard Time,

chickiemom1@... writes:

<< i am at the end of my rope guys. I don't know what to do. i am tired

of complaining and i would like to be here more than i am....it

really helped before and i know it can again. I am in denial one day,

convinced the next...and the next hour looking for another dx? is

this crazy behavior normal? not being convinced of the ASD? then

turning around and believing it totally?

>>

Oh Marie,

I'm so sorry that things are not well. I have never been to that point so I

can't say anything to you that will help. I can keep you in my prayers and

be here to listen. I hope you get the peace you need, however you decide to

get it.

Gail

[Guest guest]

In a message dated 1/9/01 1:04:17 AM Eastern Standard Time,

chickiemom1@... writes:

<< I am in denial one day,

convinced the next...and the next hour looking for another dx? is

this crazy behavior normal? not being convinced of the ASD? then

turning around and believing it totally? >>

You know Marie, one of the hardest parts of autism is that it seems so

intangible. You can visibly see DS, so it's easier to believe.

I can't tell you what to do about home placement. However, I do feel that

you should try and get support through your school services before you make

any decisions. Have you tried behavior modification? Has anyone at your

son's school helped you in dealing with these behaviors? Does he have an

aide to stay with him and help him deal with social situations, especially

where he acts out? Also, there are ways to build support at home. Go to

http://www.beachcenter.org/ I think that's the site that can help you set

something up. Joan? Am I right? Help?

I would never in a million years presume to judge anyone who makes the

decision to place their child. Maddie is in a class of 6 children and only

she and another child go home every day. The one little girl's family lives

in NY and they see her only on holidays. Again, I don't judge them. I

just know I couldn't do that.

Marie, I *have* been at the end of my rope. Except that I have an amazing

support system. My husband hired a girl to help in taking care of Maddie and

the other four kids who was a god-send during those horrific times, AND we

both have large families who have always been there for us. We're very

blessed, I know. But there are ways to build your own circle of support

within your community if you dont' have family. Joan's site, I think,

describes in detail how to do it. Are you registered within your local ARC?

You need a case manager to help guide you in ways to get any services that

you can.

Hang in there Marie. Talk with your doc. Try to find ways to implement BM

in school and in your home before you make any final decisions. Good luck

and know that whatever you do, we are always here to support you and give you

{{{{{{{{{{hugs}}}}}}}}}}. Because more than anything, we know what you're

going through.

Donna

[Guest guest]

As the mother of a fifteen year old with sometimes attacking behaviors I

would like to ask some questions that you could think about BEFORE you

think of out of home placment. My husband and I also are opeators of a

family based treatment home for kids with MR/ehaviors although to date none

of us (there are six families in the program) have been asked to take kids

like ours!

Questions: Has anyone helped you do a funtional analysis of his ehavior?

Sometimes just knowing that you will be writing down what preceeds the

behavior/what was the behavior/what was the result (also called ABC for

antecedent, behavior, consequence. Is the school doing a functioal analsis

of EACH incident? This data collecting can help pin point things that set

off your son. Have you cut his nails? I cut Elie's every week and keep

them as sort as possible. I don't want him clawing people, but I also want

to be able to scrub his hands clean of school bacteria before he infects our

house! Have you disussed medication options? We have seen a great decrease

in abusive behavior (towards others) with proper medication. Reading this

list, I know you realize that no one med works for all our kids. Sometimes

one must try different things. Are you receiving wrap services to modify

his behavior? Does your state or county have this capability? Do you have

a case manager fom the county or funding area?

I have childen in my home who with proper supports to the family couldhave

stayed home. I also have chldren who have no families so their options are

here or an institution.

If you feel that you have exhausted all possibilities for your child at home

and cannot get the support you need to keep him home, then why not explore

family based treatment? This is where a family with father and mother home

all the time (no outside work) will work to modify your child's behavior

through a individual family treatment plan with the goal being to return

home as soon as possible.

Explore your options and let us know how things go. Many of us have been in

your shoes!!!

Sara, Mom to Elie now 15yo and hooked this week on Phil

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

terry,

you tell the truth with such style and reality..... thanks for inspiring and

sharing...leah

>From: Imaddenmom@...

>Reply-egroups

>egroups

>Subject: Re: advice please

>Date: Tue, 9 Jan 2001 11:26:53 EST

>

>Hi Chickiemom,

>I think we have all been where you are at one time or another...whether we

>want to admit it or not. The idea of someday having to " place " your child

>in

>an out of home situation is pretty darn scary, no doubt. 's

>behaviors

>worsened at about age 5, I guess. He became more and more self-injurious

>and

>aggressive. It scared us to death. It was all we could do to control him

>and all we could think of was what would we do when he was bigger? At the

>time, our HMO insurance told us they didn't treat " autism " and referred us

>to

>a mental health provider. He tried several meds to control 's

>behavior with not a lot of success. Finally, had a grand mal

>seizure

>at school and I was able to force the insurance company to give us a

>referral

>to a Neurologist. was diagnosed with a seizure disorder and it

>turned out that at least part (the worst part at the time) of his behavior

>was either due to or exacerbated by the seizures. Once he was on seizure

>meds, the behaviors changed dramatically. is almost 14 now and

>over

>the years his behavior has deteriorated a lot. We still battle between

>behaviors related to seizure activity and behaviors related to the austism

>diagnosis. I guess the bottom line is that no matter what the cause,

>

>doesn't seem to have much control over the behaviors. They just " are " .

>For

> and us, the answer has been medication. He is presently taking two

>anti-psychotic drugs as well as two seizure meds. We see a flattening of

>his

>personality for sure, but it is the lesser of two evils compared to the

>behaviors if you know what I mean. That isn't to say that his behaviors

>are

>totally under control. He still bites, pinches, scratches, clears tables,

>knocks over furniture, etc. but not as much as he did. One more

>thing.........people are forever asking me what will we do when is

> " older " . I tell them that we will deal with that when the time

>comes... " one

>day at a time " as the saying goes. When was 2 or 3, if someone

>would have said that when he was almost 14 and in puberty he would still be

>in diapers, I would not have been able to fathom " how " I could deal with

>it.

> But that's where we are, and while it can be a real pain in the butt, it

>is

>certainly manageable. My point is that you can't project how things will

>be

>or how you will feel in the future. You can only deal with the " now " .

>Good

>luck and my prayers are with you. If you would like to talk, please e-mail

>me directly.

>Terry

>Mom to , 13 yrs.

>

>

>

[Guest guest]

sara or mary s.,

which one of you found that really good camp last year in pennsylvania.... i

know its only early jan, but i am on a mission to find a camp for ashton

other than camp easter hells...... that was a nightmare waiting to do damage

toall of us......if youstill have the info please share.

>From: " sara cohen " <pastmidvale@...>

>Reply-egroups

>egroups

>Subject: Re: advice please

>Date: Tue, 09 Jan 2001 11:41:10 -0500

>

>As the mother of a fifteen year old with sometimes attacking behaviors I

>would like to ask some questions that you could think about BEFORE you

>think of out of home placment. My husband and I also are opeators of a

>family based treatment home for kids with MR/ehaviors although to date

>none

>of us (there are six families in the program) have been asked to take kids

>like ours!

>

>Questions: Has anyone helped you do a funtional analysis of his ehavior?

>Sometimes just knowing that you will be writing down what preceeds the

>behavior/what was the behavior/what was the result (also called ABC for

>antecedent, behavior, consequence. Is the school doing a functioal analsis

>of EACH incident? This data collecting can help pin point things that set

>off your son. Have you cut his nails? I cut Elie's every week and keep

>them as sort as possible. I don't want him clawing people, but I also want

>to be able to scrub his hands clean of school bacteria before he infects

>our

>house! Have you disussed medication options? We have seen a great

>decrease

>in abusive behavior (towards others) with proper medication. Reading this

>list, I know you realize that no one med works for all our kids. Sometimes

>one must try different things. Are you receiving wrap services to modify

>his behavior? Does your state or county have this capability? Do you have

>a case manager fom the county or funding area?

>

>I have childen in my home who with proper supports to the family couldhave

>stayed home. I also have chldren who have no families so their options are

>here or an institution.

>

>If you feel that you have exhausted all possibilities for your child at

>home

>and cannot get the support you need to keep him home, then why not explore

>family based treatment? This is where a family with father and mother home

>all the time (no outside work) will work to modify your child's behavior

>through a individual family treatment plan with the goal being to return

>home as soon as possible.

>

>Explore your options and let us know how things go. Many of us have been

>in

>your shoes!!!

>

>Sara, Mom to Elie now 15yo and hooked this week on Phil

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

marie,

everyone else has already spoken what i would have said, but i will say

this...if you are at the ultimate end of your rope and your world is only

filled with black and you see no color at all anywhere in anything, then by

all means take care of you!!!! i used to neglect myself and only focus on

ashton and her world...i got so wrapped up in her that i forgot me..... ME

IS THE ONE WHO CARES FOR HER.....therefore, take care of the " ME " in you

first this time...if that means a vacation away from the real world then so

be it....you deserve it......i have done a lot of crazy things in my life

and i have been on the verge of ditching ashton with family services when

she was young and i was still a teenager myself, but somehow somewhere i

found the strength to look up and find some color in life.....the darkness

has faded...... and i take care of me....... please hang in there and

whatever you decide you have my undying support....life is not easy and our

kids didnt come with a book called " parenting special complicated needs for

dummies " yout in my prayers, leah

>From: smilinggail@...

>Reply-egroups

>egroups

>Subject: Re: advice please

>Date: Tue, 9 Jan 2001 15:12:37 EST

>

>In a message dated 1/9/01 1:04:15 AM Eastern Standard Time,

>chickiemom1@... writes:

>

><< i am at the end of my rope guys. I don't know what to do. i am tired

> of complaining and i would like to be here more than i am....it

> really helped before and i know it can again. I am in denial one day,

> convinced the next...and the next hour looking for another dx? is

> this crazy behavior normal? not being convinced of the ASD? then

> turning around and believing it totally?

> >>

>Oh Marie,

>I'm so sorry that things are not well. I have never been to that point so

>I

>can't say anything to you that will help. I can keep you in my prayers and

>be here to listen. I hope you get the peace you need, however you decide

>to

>get it.

>Gail

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Amen to that, Leah! You are absolutely right!! Sometimes we get so

bogged down by " shoulds " and " have to's " for our kids that we forget

about our own sanity and well-being!

Terry

[Guest guest]

amen heheh i agree..... i now take care of me....i get my nails done twice a

month, a massage, and my hair done by someone other than clairol...hheeh i

stained the floor in our new house by dying my own hair....hehehcheaper to

pay to do it then to pay to replace the floor every five -seven weeks...hhe

i never have done these things before but i do now...... makes me feel

better about me and someone is serving my needs and menot them...hehehe

>From: " Terry Madden " <Imaddenmom@...>

>Reply-egroups

>egroups

>Subject: Re: advice please

>Date: Tue, 09 Jan 2001 20:34:12 -0000

>

>Amen to that, Leah! You are absolutely right!! Sometimes we get so

>bogged down by " shoulds " and " have to's " for our kids that we forget

>about our own sanity and well-being!

>Terry

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com