Antipsychotic Drugs

[Guest guest]

has been on three different meds for her behavior. First, we tried

Abilify which kept her up at night and made her feel comatose, the second one

was generic Cylexa which made her more aggressive, and now she is on Resperdal,

which also seems to amplify her aggressive and obsessive compulsive behavior. I

just don't know what to do. I know every CHARGE kid is different, but is there

anyone out there who has been there done that? is 10 1/2 years old and

this is our first try on any meds for her behavior because things were really

escalating fast. I do homeschool her so therefore, we are together 24/7. I am

trying to get her into a school that will meet her needs (which we all know is

very difficult). I have been homeschooling for 2 years now and am quite burnt

out! She is very smart, but needs a different approach with things. She reads

and writes and gets on the computer. The reason I HAD to homeschool her was

because our school system failed her in a

big way, and I was so exhausted from fighting the system. She loves to be with

other kids and I feel guilty that she cannot be with them as much as she would

like to. She was in the public school system here in Florida in a deaf-ed

program, and they could not or would not deal with her. I tried to fight for an

intervener to no avail. No one here even knows what an intervener is! Florida

is so far behind!!! Anyway, that's my story (sorry it's so long!)

Thanks for listening.

Sieber (Mom to CHARGER 10 1/2 years old)

[Guest guest]

Dear Mr.Sieber,

I am new to the forum here. This is the first time I have seen someone write

about medications for a childs behavior. I would like to ask you if you know if

it is part of having

charge syndrome when a child has behavior issues such as adhd or agressive

tendancies etc. I have really been trying to find information on the subject.

Thank you

Cyndi Bree

CARL SIEBER wrote:

has been on three different meds for her behavior. First, we

tried Abilify which kept her up at night and made her feel comatose, the second

one was generic Cylexa which made her more aggressive, and now she is on

Resperdal, which also seems to amplify her aggressive and obsessive compulsive

behavior. I just don't know what to do. I know every CHARGE kid is different,

but is there anyone out there who has been there done that? is 10 1/2

years old and this is our first try on any meds for her behavior because things

were really escalating fast. I do homeschool her so therefore, we are together

24/7. I am trying to get her into a school that will meet her needs (which we

all know is very difficult). I have been homeschooling for 2 years now and am

quite burnt out! She is very smart, but needs a different approach with things.

She reads and writes and gets on the computer. The reason I HAD to homeschool

her was because our school system failed her in a

big way, and I was so exhausted from fighting the system. She loves to be with

other kids and I feel guilty that she cannot be with them as much as she would

like to. She was in the public school system here in Florida in a deaf-ed

program, and they could not or would not deal with her. I tried to fight for an

intervener to no avail. No one here even knows what an intervener is! Florida is

so far behind!!! Anyway, that's my story (sorry it's so long!)

Thanks for listening.

Sieber (Mom to CHARGER 10 1/2 years old)

[Guest guest]

,

As you may know, I work at the Perkins School for the Blind near Boston, MA. We

have MANY CHARGE kids in our program and work with two behaviorists and our

consulting psychiatrist. I have passed your message on to the behaviorists as

they will know better the medications our kids are using. I will talk with both

of them tomorrow about contacting you.

pam

Antipsychotic Drugs

has been on three different meds for her behavior. First, we tried

Abilify which kept her up at night and made her feel comatose, the second one

was generic Cylexa which made her more aggressive, and now she is on Resperdal,

which also seems to amplify her aggressive and obsessive compulsive behavior. I

just don't know what to do. I know every CHARGE kid is different, but is there

anyone out there who has been there done that? is 10 1/2 years old and

this is our first try on any meds for her behavior because things were really

escalating fast. I do homeschool her so therefore, we are together 24/7. I am

trying to get her into a school that will meet her needs (which we all know is

very difficult). I have been homeschooling for 2 years now and am quite burnt

out! She is very smart, but needs a different approach with things. She reads

and writes and gets on the computer. The reason I HAD to homeschool her was

because our school system failed her in a

big way, and I was so exhausted from fighting the system. She loves to be with

other kids and I feel guilty that she cannot be with them as much as she would

like to. She was in the public school system here in Florida in a deaf-ed

program, and they could not or would not deal with her. I tried to fight for an

intervener to no avail. No one here even knows what an intervener is! Florida

is so far behind!!! Anyway, that's my story (sorry it's so long!)

Thanks for listening.

Sieber (Mom to CHARGER 10 1/2 years old)

[Guest guest]

,

I strongly suggest that you let Pam follow though and see what

information she gets from the Perkins' behavioralists. As you may

remember, attended Perkins for 7 years, and has a long and bumpy

history with psych meds. However, although 's first eval for our

school district was done at P while she was still here, I contacted one of

P's psychs years later when behavior became a concern --- I had heard

this woman give a paper but did not know her. She was a wealth of

information. Hang in there. I promise you that there is help.

has never been on the meds you mentioned. We started with

Zoloft, moved to Luvox (a disaster), and now happily continue with Paxil,

with a very, very occasional Ativan during moments of great stress. It's not

a smooth road to find the right meds, but I promise you that it can be

done.

Martha

[Guest guest]

,

This is the exact age the behaviors became a REAL problem for us

too. My son Mark has been on several different meds. He currently takes

Wellbutrin SR, Topamax, and Trazadone for behaviors. The Trazodone was the most

recent and help immensly with his self abusive behaviors. Hope this helps.

[Guest guest]

>

> has been on three different meds for her behavior. First,

we tried Abilify which kept her up at night and made her feel

comatose, the second one was generic Cylexa which made her more

aggressive, and now she is on Resperdal, which also seems to amplify

her aggressive and obsessive compulsive behavior. I just don't know

what to do. I know every CHARGE kid is different, but is there

anyone out there who has been there done that? is 10 1/2

years old and this is our first try on any meds for her behavior

because things were really escalating fast. I do homeschool her so

therefore, we are together 24/7. I am trying to get her into a

school that will meet her needs (which we all know is very

difficult). I have been homeschooling for 2 years now and am quite

burnt out! She is very smart, but needs a different approach with

things. She reads and writes and gets on the computer. The reason

I HAD to homeschool her was because our school system failed her in a

> big way, and I was so exhausted from fighting the system. She

loves to be with other kids and I feel guilty that she cannot be

with them as much as she would like to. She was in the public

school system here in Florida in a deaf-ed program, and they could

not or would not deal with her. I tried to fight for an intervener

to no avail. No one here even knows what an intervener is! Florida

is so far behind!!! Anyway, that's my story (sorry it's so long!)

>

> Thanks for listening.

>

> Sieber (Mom to CHARGER 10 1/2 years old)

>

>

>

[Guest guest]

Hi ,

I have avoided responding to the medication issue because I tend to

upset some people. It is so hard to be clear about this issue. Part of

the problem with using the meds is that the doctors are working in the

dark on this. There is very little research on the use of psychotropic

medications with children. There is virtually nothing on their use with

CHARGE. Lee Wachtel and I have an article coming out on this, but it is

essentially parent report of what their children have taken, and there

is nothing regarding how effective it is. Some psychiatrists are using

a cocktail approach to psychotropics and you will find kids on several

drugs simultaneously. There is no research to support this practice

with children, but the reasoning is that for some diseases like AIDS a

cocktail approach seems to work better than a single medication, and so

maybe that will be true of psychiatric disorders as well. I find this

approach frightening due to all the side effects. I have read some

material recently that found behavioral approaches work better with

children than the psychotropic meds. Of course the problem is finding

someone to establish a really good behavioral intervention plan can be

more difficult than finding a doctor willing to prescribe the meds. If

you are interested in looking into a behavioral approach, I highly

recommend a book by Ed Carr, Communication-based intervention for

problem behavior. You can get it for under $25 at amazon.com. It gets

a bit technical here and there, but over all I think it is pretty user

friendly. If I were going to use psychotropics with (my son with

CHARGE) I would go for a very low dose of an SSRI medication. I would

use this in conjunction with good behavioral intervention. is a

very low functioning 17-year-old. He has limited communication skills,

and is cognitively probably around 3 years old. So he is different from

a lot of the kids who are discussed on the list. His behavior is not

too bad, but we have used a lot of behavioral interventions when he has

demonstrated some negative behavior. But most of the time his

behavioral episodes are pain related. I wish we were closer to

understanding the sources of the behavioral difficulties. But one

reasonable hypothesis is that the experience of chronic pain is a strong

contributor. Headaches, tooth aches, ear aches, and intestinal pain

can be extremely difficult to cope with, and are probably fairly common

with our kids. All of the behaviors we see with CHARGE are reasonable

reactions to long term chronic pain. I am not saying that I believe

this is the cause of the behavioral difficulties in CHARGE, but it is

likely a contributing factor, and I think as parents we need to be aware

of this and try to manage pain in our children.

I think I rambled here. This is a complicated issue, and there is no

answer to the question of what psychotropic works best for CHARGE. What

Lee and I found was that nearly every psychotropic out there has been

tried.

Tim Hartshorne

[Guest guest]

Tim,

I agree with you 100%. I think one of the most important things you said

here is the idea of working with someone on a good behavioral plan. This is

so often the biggest need and can work wonders in terms of the kids

understanding what is acceptable or not as well as anticipating what is

next, etc.

As you know, many of our kids present with significant behaviors on top of

their cognitive disabilities and sensory deficits. Our behaviorists work

hard to do exactly what you suggest and then there are still kids with

bigger issues which is where the medications come in. We have a very good

consulting psychiatrist who has seen a wide range of kids and young adults

and we feel comfortable with all that he has come to learn about CHARGE.

His work with parents and staff and kids has been great and we have had good

luck. Of course, meds are not the first choice and behavioral intervention

remains the mainstay.

pam

>

>

>

>

> Hi ,

>

> I have avoided responding to the medication issue because I tend to

> upset some people. It is so hard to be clear about this issue. Part of

> the problem with using the meds is that the doctors are working in the

> dark on this. There is very little research on the use of psychotropic

> medications with children. There is virtually nothing on their use with

> CHARGE. Lee Wachtel and I have an article coming out on this, but it is

> essentially parent report of what their children have taken, and there

> is nothing regarding how effective it is. Some psychiatrists are using

> a cocktail approach to psychotropics and you will find kids on several

> drugs simultaneously. There is no research to support this practice

> with children, but the reasoning is that for some diseases like AIDS a

> cocktail approach seems to work better than a single medication, and so

> maybe that will be true of psychiatric disorders as well. I find this

> approach frightening due to all the side effects. I have read some

> material recently that found behavioral approaches work better with

> children than the psychotropic meds. Of course the problem is finding

> someone to establish a really good behavioral intervention plan can be

> more difficult than finding a doctor willing to prescribe the meds. If

> you are interested in looking into a behavioral approach, I highly

> recommend a book by Ed Carr, Communication-based intervention for

> problem behavior. You can get it for under $25 at amazon.com. It gets

> a bit technical here and there, but over all I think it is pretty user

> friendly. If I were going to use psychotropics with (my son with

> CHARGE) I would go for a very low dose of an SSRI medication. I would

> use this in conjunction with good behavioral intervention. is a

> very low functioning 17-year-old. He has limited communication skills,

> and is cognitively probably around 3 years old. So he is different from

> a lot of the kids who are discussed on the list. His behavior is not

> too bad, but we have used a lot of behavioral interventions when he has

> demonstrated some negative behavior. But most of the time his

> behavioral episodes are pain related. I wish we were closer to

> understanding the sources of the behavioral difficulties. But one

> reasonable hypothesis is that the experience of chronic pain is a strong

> contributor. Headaches, tooth aches, ear aches, and intestinal pain

> can be extremely difficult to cope with, and are probably fairly common

> with our kids. All of the behaviors we see with CHARGE are reasonable

> reactions to long term chronic pain. I am not saying that I believe

> this is the cause of the behavioral difficulties in CHARGE, but it is

> likely a contributing factor, and I think as parents we need to be aware

> of this and try to manage pain in our children.

>

> I think I rambled here. This is a complicated issue, and there is no

> answer to the question of what psychotropic works best for CHARGE. What

> Lee and I found was that nearly every psychotropic out there has been

> tried.

>

> Tim Hartshorne

>

>

[Guest guest]

³ has been on three different meds for her behavior. ...²

,

Here is the reply from Veronika Bernstein:

Hi,

Thank you for sharing your story. Kids with CHARGE are not easy. At Perkins,

we are working with a wide range of challenging behaviors associated with

CHARGE.

My first question is whether 's sensory needs are met. What is her

Sensory Motor Integration plan (diet) at this time?

My second question is about her current communication. She is smart, and

it's wonderful. But does she communicate effectively? Is there everything

she needs to get the information and to express herself in a more effective

way? In your message you are saying that she " needs a different approach

with things " . I like this way of thinking very much. A different approach

means different way to get and to process information. Is there anybody who

can assist you with teaching her a different approach? It could be a Speech

Therapist who has experience in setting up communication systems. It could

be a Behavior Therapist who is experienced in teaching more effective

communication strategies to replace aggressive behaviors.

We do have kids with CHARGE who are on medications. Given the increased

rates of Anxiety Spectrum Disorders in CHARGE population, SSRI's or

antianxiety medications are the first choice of meds. Typically, it takes

several trials each of 2-3 months in duration to find a medication that is

effective with the least side effects. In addition, we did have good results

with stimulants with two students, and Risperidone with two other students.

I am sorry to hear about your experience with the school system. It is to

hard to go it alone. Please do not hesitate to write or call.

All the best,

Veronika

Veronika Bernstein Ph.D.

Developmental Specialist

Perkins School for the Blind

175 N.Beacon Street

Watertown, MA 02472

>

>

>

>

> has been on three different meds for her behavior. First, we tried

> Abilify which kept her up at night and made her feel comatose, the second one

> was generic Cylexa which made her more aggressive, and now she is on

> Resperdal, which also seems to amplify her aggressive and obsessive compulsive

> behavior. I just don't know what to do. I know every CHARGE kid is

> different, but is there anyone out there who has been there done that?

> is 10 1/2 years old and this is our first try on any meds for her behavior

> because things were really escalating fast. I do homeschool her so therefore,

> we are together 24/7. I am trying to get her into a school that will meet her

> needs (which we all know is very difficult). I have been homeschooling for 2

> years now and am quite burnt out! She is very smart, but needs a different

> approach with things. She reads and writes and gets on the computer. The

> reason I HAD to homeschool her was because our school system failed her in a

> big way, and I was so exhausted from fighting the system. She loves to be

> with other kids and I feel guilty that she cannot be with them as much as she

> would like to. She was in the public school system here in Florida in a

> deaf-ed program, and they could not or would not deal with her. I tried to

> fight for an intervener to no avail. No one here even knows what an

> intervener is! Florida is so far behind!!! Anyway, that's my story (sorry

> it's so long!)

>

> Thanks for listening.

>

> Sieber (Mom to CHARGER 10 1/2 years old)

>

>

[Guest guest]

I agree with both Pam and Tim, and from my experience meds won't work

without a strong behavioral plan. is almost 10, very high

functioning, verbal with very intelligent speech like a 9 year old, and has

a phenomenal behavioral program both at home and school. However, he

wouldn't be able to function without his Depakote and Wellbutrin. When we

tried him without the Wellbutrin, sticking with a very strict behavior

management system, the checking behavior overtook and counteracted any sort

of behavioral plan we have in place. was miserable. He was totally

consumed by his checking and he himself knew it. On the Wellbutrin, he

still does his checking, but it is reduced by approximately 80%, leaving

room in there for paying attention at school and learning and trying to be a

kid.

The other drug, Depakote, was originally used for his severe abdominal

migraines. The benefits of the drug are that he can live without the pain

of migraines and constantly dry heaving. This medication was started at 4

years old and is also used to treat his OCD which if he is not on the

Depakote, can't function. With these meds, and a great behavioral plan in

place, is able to live a semi-normal life.

He is also on Celexa which we see benefit from, but not sure exactly how

much benefit. He is on a very low dose. I'd like to see him off of this

one.

has endured many operations, procedures etc., and I know he has

pain. However, he can tell me when he has pain. He tells me he needs full

body x-rays to make sure he is okay. He worries a great deal about his own

health. I see his behaviors escalate when he has a cold or is going to get

sick. When the sickness finally comes, he begins to return back to

baseline, but not always. Sometimes after a sickness he would a medication

adjustment. I think his behavior escalates because he gets so nervous and

anxious about being sick. He also has a great deal of compassion for other

people who get sick. I have never seen a boy of his age have so much

concern for other people around him.

At his last surgery in August, we sat and talked for hours going over

everything that would happen beforehand. He couldn't calm himself until

after the surgery when he saw he was okay. He verbalized all of his

anxiousness etc. very intelligently using all the medical terms etc.

I think in our situation there is more of a chemical component which is the

piece the behavioral plan can't help.

Debbie Matasker

Re: Re:Antipsychotic Drugs

Tim,

I agree with you 100%. I think one of the most important things you said

here is the idea of working with someone on a good behavioral plan. This is

so often the biggest need and can work wonders in terms of the kids

understanding what is acceptable or not as well as anticipating what is

next, etc.

As you know, many of our kids present with significant behaviors on top of

their cognitive disabilities and sensory deficits. Our behaviorists work

hard to do exactly what you suggest and then there are still kids with

bigger issues which is where the medications come in. We have a very good

consulting psychiatrist who has seen a wide range of kids and young adults

and we feel comfortable with all that he has come to learn about CHARGE.

His work with parents and staff and kids has been great and we have had good

luck. Of course, meds are not the first choice and behavioral intervention

remains the mainstay.

pam

On 1/4/07 8:50 AM, " Hartshorne, S " <Tim.hartshorne@

<mailto:Tim.hartshorne%40CMICH.edu> CMICH.edu> wrote:

>

>

>

>

> Hi ,

>

> I have avoided responding to the medication issue because I tend to

> upset some people. It is so hard to be clear about this issue. Part of

> the problem with using the meds is that the doctors are working in the

> dark on this. There is very little research on the use of psychotropic

> medications with children. There is virtually nothing on their use with

> CHARGE. Lee Wachtel and I have an article coming out on this, but it is

> essentially parent report of what their children have taken, and there

> is nothing regarding how effective it is. Some psychiatrists are using

> a cocktail approach to psychotropics and you will find kids on several

> drugs simultaneously. There is no research to support this practice

> with children, but the reasoning is that for some diseases like AIDS a

> cocktail approach seems to work better than a single medication, and so

> maybe that will be true of psychiatric disorders as well. I find this

> approach frightening due to all the side effects. I have read some

> material recently that found behavioral approaches work better with

> children than the psychotropic meds. Of course the problem is finding

> someone to establish a really good behavioral intervention plan can be

> more difficult than finding a doctor willing to prescribe the meds. If

> you are interested in looking into a behavioral approach, I highly

> recommend a book by Ed Carr, Communication-based intervention for

> problem behavior. You can get it for under $25 at amazon.com. It gets

> a bit technical here and there, but over all I think it is pretty user

> friendly. If I were going to use psychotropics with (my son with

> CHARGE) I would go for a very low dose of an SSRI medication. I would

> use this in conjunction with good behavioral intervention. is a

> very low functioning 17-year-old. He has limited communication skills,

> and is cognitively probably around 3 years old. So he is different from

> a lot of the kids who are discussed on the list. His behavior is not

> too bad, but we have used a lot of behavioral interventions when he has

> demonstrated some negative behavior. But most of the time his

> behavioral episodes are pain related. I wish we were closer to

> understanding the sources of the behavioral difficulties. But one

> reasonable hypothesis is that the experience of chronic pain is a strong

> contributor. Headaches, tooth aches, ear aches, and intestinal pain

> can be extremely difficult to cope with, and are probably fairly common

> with our kids. All of the behaviors we see with CHARGE are reasonable

> reactions to long term chronic pain. I am not saying that I believe

> this is the cause of the behavioral difficulties in CHARGE, but it is

> likely a contributing factor, and I think as parents we need to be aware

> of this and try to manage pain in our children.

>

> I think I rambled here. This is a complicated issue, and there is no

> answer to the question of what psychotropic works best for CHARGE. What

> Lee and I found was that nearly every psychotropic out there has been

> tried.

>

> Tim Hartshorne

>

>

[Guest guest]

Tim,

Mark's medications which help him greatly don't fall under the

psychotropic medications (I don't think) though I have been out of that field

for

13+ years now. Do they? He is on a couple antidepressants and the Topamax. The

Trazodone which really helped with the self abuse and the Wellbutrin.

[Guest guest]

The behavior stuff just dumbfounds us all, I think. We started with

exhibiting negative behaviors (aggression towards others, disrupting

classes, running in the hallway at school and slamming doors, throwing

things) about 4 years ago, so around 10 yrs old. It had been on-again,

off-again types of things. This school year it escalated to very little

leading up to “episodes”, as the school called them. The school counselor

noted that the time of onset to full escalation seemed to be decreasing

dramatically – there was very little “work up” to full blown aggression –

and a lack of ability in redirecting her. We believe it is due to

frustrations with transitions (she is in middle school and transitions a lot

between classrooms and even the different buildings on campus). There is

also a visual component we are still attempting to get evaluated correctly.

Is there a pain component? We’re not sure; but I do know I have had many

headaches this fall and winter due to sinus issues, and I know has

problems that coincide to times I have them. So there could very well be a

sinus pain aspect that plays into her behaviors. The school does not feel

this could possibly be the case, as doesn’t tell them she has pain.

also has JRA, which could have pain that fluctuates as well. (There

are noted negative behaviors with these individuals also, so she has two

strikes on her.)

We’ve been struggling with the school for appropriate testing/evaluation for

. They are very good with the Deaf aspects, but they really have no

knowledge regarding visual impairments. So they don’t know how to approach

the deafblind evaluation. We finally got the Blind School involved in some

evaluations, but the IQ portion and language assessments had already been

completed before they understood there was any problem with vision. These

have not been redone. We have gotten them to implement a Behavior Plan, but

there are still gaps. We’ve had at least six facilitated case conferences

this year, several meetings without a facilitator, and the DB Project

sponsored Tim and Meg to come and do a presentation on CHARGE that was

offered state-wide. Tim & Meg then consulted at the Deaf School the next

day. For the first time, I think some of the school staff started to

understand some of the issues our children with CHARGE face, and in

particular. is on a low dose of Risperdal at school for her

behaviors. Interestingly enough, we do not give the med at home, and

experience OCD issues; but nothing like the aggression they have occurring

at the school. And she still has been written up since Tim and Meg came

because she hugged another student too hard one day, and a staff member the

next. The staff still does not understand that may not be able to

distinguish specific touches and pressure, and may need to be assisted in

understanding it. School wanted to up her dose of Risperdal and we refused

to allow that.

We have another case conference January 17, and the LEA wants to discuss the

academic expectations at that conference. I’m not sure how we can do that

until we have new evaluations (appropriate) done by a team knowledgeable

about deafblindness. We are still pushing for a Perkins evaluation. The

Deaf School knows Deaf; the Blind School knows visual impairment: Neither

one knows deafblind or CHARGE. I will be hitting that heavily at the

conference and will be asking for the LEA to formally provide notice as to

why this will not be happening. (The Prior Notice paperwork required by the

District or State.) I am getting lots of good information off-list and

really appreciate it. The behaviors are not something I feel need to be

“medicated”, as we don’t seem to have these exaggerated aggression issues at

home.

I had asked the school psychiatrist about different OCD meds, and she feels

the Risperdal is the best fit at this point. (I really believe that

anxiety, pain, and the OCD aspects are the reasons acts out.) We

had tried Zoloft and it sent off the deep end: Wound up, signing so

fast she couldn’t control it, eyes popping out of her head, unable to sit

still more than 30 seconds. This was after only the first ¼ of the

anticipated dose! And, what was worse, knew it was making her do

crazy things. (Her teacher that year – I think that was three years ago –

said he preferred to deal with the OCD issues without meds over how

acted on the med!) I have an aversion to these drugs, precisely for the

reasons Tim stated: What are their effects on children? And, particularly,

what are their effects on individuals with CHARGE? What are the long-term

implications? I know some have found relief through their use, and I say

God bless and good luck. But for us, I’d prefer to limit medications to

those truly necessary for healthy body function: asthma meds and the like.

Someone asked me once why I was so against these drugs when receives

growth hormone (a “non-necessary” med in their opinion). My response is

that is completely growth hormone deficient (and I suspect will

prove to not have any production of sex hormones also). We are simply

replacing something that her body should be making naturally. If it proves

that psychotropic drugs provide something she should have occurring

naturally, or that they suppress something that she is producing an

overabundance of, then OK, we’ll use one. Until that can be proven, we

choose to not do any more than the Risperdal. And I will be continuing to

question if it is really needed. It may be that it relieves some anxiety

for in the numerous transitions she encounters daily. Does anyone

know: Does Risperdal work to suppress or counteract the chemicals released

during stress and anxiety? (I know we all produce them at certain times of

stress.) And do these chemicals produce or antagonize the system to induce

these behaviors? Deep, deep stuff, I know. And no easy answers.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

[Guest guest]

Debbie,

Thanks for your terrific response. These things are so very complex, and

your account of your experience is so very helpful!

Tim

[Guest guest]

Marilyn,

Sorry you are continuing to have difficulties with the school. As I said to

them, I really believe an independent person centered plan would be helpful.

They seem to want to do it in house. I also agree that an evaluation by

Perkins would be helpful, but make sure that the questions to be answered

are very clear to everybody.

Tim

[Guest guest]

n is almost 16yrs old and we just started him on Cylexa in conjunction

with Respirdal. I think it is good to use a combination. It has been heaven

for us!

Sundi

Antipsychotic Drugs

has been on three different meds for her behavior. First, we tried Abilify

which kept her up at night and made her feel comatose, the second one was

generic Cylexa which made her more aggressive, and now she is on Resperdal,

which also seems to amplify her aggressive and obsessive compulsive behavior. I

just don't know what to do. I know every CHARGE kid is different, but is there

anyone out there who has been there done that? is 10 1/2 years old and

this is our first try on any meds for her behavior because things were really

escalating fast. I do homeschool her so therefore, we are together 24/7. I am

trying to get her into a school that will meet her needs (which we all know is

very difficult). I have been homeschooling for 2 years now and am quite burnt

out! She is very smart, but needs a different approach with things. She reads

and writes and gets on the computer. The reason I HAD to homeschool her was

because our school system failed her in a

big way, and I was so exhausted from fighting the system. She loves to be with

other kids and I feel guilty that she cannot be with them as much as she would

like to. She was in the public school system here in Florida in a deaf-ed

program, and they could not or would not deal with her. I tried to fight for an

intervener to no avail. No one here even knows what an intervener is! Florida is

so far behind!!! Anyway, that's my story (sorry it's so long!)

Thanks for listening.

Sieber (Mom to CHARGER 10 1/2 years old)

[Guest guest]

Tim:

Well, we haven't really had much time since you and Meg were here.

Actually, the reports came the Tuesday after we started Christmas vacation.

Of course, they had not notified us of anything either, and this was

something the LEA and I clarified back in October to which the Teacher of

Record and Supervising Teacher agreed: That they need to at least send me

an e-mail stating there was an issue at school. These formal disciplinary

notices arrive in the mail, sometimes weeks after the incident, totally

catching us off guard. School starts again on Monday (8th) and we have case

conference on 17th. I'll be sure to bring up the Person Centered Planning

and see if everyone involved received that last e-mail from you.

Basically, I want Perkins to start from scratch on an evaluation: Language,

functional vision, hearing, orientation & mobility, learning style,

cognition, etc. I don't think that the Deaf School's evaluation should even

be used by someone outside because it has never been re-done after knowing

there are additional physical findings for that impact testing and

education. And they still don't know deafblind assessment. I know: Harp

on that a bit more!

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Tim Hartshorne

Sent: Thursday, January 04, 2007 5:17 PM

To: CHARGE

Subject: Re: Antipsychotic Drugs

Marilyn,

Sorry you are continuing to have difficulties with the school. As I said to

them, I really believe an independent person centered plan would be helpful.

They seem to want to do it in house. I also agree that an evaluation by

Perkins would be helpful, but make sure that the questions to be answered

are very clear to everybody.

Tim

[Guest guest]

DEbbie,

what a great " chronicle " of 's experiences and insight. thanks.

pam

Re: Re:Antipsychotic Drugs

Tim,

I agree with you 100%. I think one of the most important things you said

here is the idea of working with someone on a good behavioral plan. This is

so often the biggest need and can work wonders in terms of the kids

understanding what is acceptable or not as well as anticipating what is

next, etc.

As you know, many of our kids present with significant behaviors on top of

their cognitive disabilities and sensory deficits. Our behaviorists work

hard to do exactly what you suggest and then there are still kids with

bigger issues which is where the medications come in. We have a very good

consulting psychiatrist who has seen a wide range of kids and young adults

and we feel comfortable with all that he has come to learn about CHARGE.

His work with parents and staff and kids has been great and we have had good

luck. Of course, meds are not the first choice and behavioral intervention

remains the mainstay.

pam

On 1/4/07 8:50 AM, " Hartshorne, S " <Tim.hartshorne@

<mailto:Tim.hartshorne%40CMICH.edu> CMICH.edu> wrote:

>

>

>

>

> Hi ,

>

> I have avoided responding to the medication issue because I tend to

> upset some people. It is so hard to be clear about this issue. Part of

> the problem with using the meds is that the doctors are working in the

> dark on this. There is very little research on the use of psychotropic

> medications with children. There is virtually nothing on their use with

> CHARGE. Lee Wachtel and I have an article coming out on this, but it is

> essentially parent report of what their children have taken, and there

> is nothing regarding how effective it is. Some psychiatrists are using

> a cocktail approach to psychotropics and you will find kids on several

> drugs simultaneously. There is no research to support this practice

> with children, but the reasoning is that for some diseases like AIDS a

> cocktail approach seems to work better than a single medication, and so

> maybe that will be true of psychiatric disorders as well. I find this

> approach frightening due to all the side effects. I have read some

> material recently that found behavioral approaches work better with

> children than the psychotropic meds. Of course the problem is finding

> someone to establish a really good behavioral intervention plan can be

> more difficult than finding a doctor willing to prescribe the meds. If

> you are interested in looking into a behavioral approach, I highly

> recommend a book by Ed Carr, Communication-based intervention for

> problem behavior. You can get it for under $25 at amazon.com. It gets

> a bit technical here and there, but over all I think it is pretty user

> friendly. If I were going to use psychotropics with (my son with

> CHARGE) I would go for a very low dose of an SSRI medication. I would

> use this in conjunction with good behavioral intervention. is a

> very low functioning 17-year-old. He has limited communication skills,

> and is cognitively probably around 3 years old. So he is different from

> a lot of the kids who are discussed on the list. His behavior is not

> too bad, but we have used a lot of behavioral interventions when he has

> demonstrated some negative behavior. But most of the time his

> behavioral episodes are pain related. I wish we were closer to

> understanding the sources of the behavioral difficulties. But one

> reasonable hypothesis is that the experience of chronic pain is a strong

> contributor. Headaches, tooth aches, ear aches, and intestinal pain

> can be extremely difficult to cope with, and are probably fairly common

> with our kids. All of the behaviors we see with CHARGE are reasonable

> reactions to long term chronic pain. I am not saying that I believe

> this is the cause of the behavioral difficulties in CHARGE, but it is

> likely a contributing factor, and I think as parents we need to be aware

> of this and try to manage pain in our children.

>

> I think I rambled here. This is a complicated issue, and there is no

> answer to the question of what psychotropic works best for CHARGE. What

> Lee and I found was that nearly every psychotropic out there has been

> tried.

>

> Tim Hartshorne

>

>

[Guest guest]

The discussions about the antipsychotic drugs has been very interesting. I

think opened the door to some productive discussions.

To us, it seems that if such drugs help, there is an indication that something

is 'wrong'. If there is something 'wrong', I want to know what it is and see if

there is a way to treat it or heal it. In my opinion, many drugs often cover-up

symptoms rather than heal a condition. Most drugs do not make a pretense of

healing. Some drugs cause additional problems. Sometimes the additional

problems are not seen for quite some time. While drugs may not provide healing,

healing is a viable expectation in my mind for many of the behavior and learning

issues our kids seem to face.

While most of us would agree that we are totally dependent on medical science to

help our kids with heart or trachea problems, I would say that we may not be as

dependent on medical science to find answers for some of the behavior and

learning issues our kids experience.

In our particular situation, and I know we are all different and all of our kids

are different, we have been able to mostly avoid drugs. Our child still takes a

miniscule dose of one antidepressant. Otherwise, other approaches have made a

significant difference for her. An example: she was kicked out of a summer

school program due to biting. Wow. Now, due to certain changes in ways we

address issues, she hasn't bitten anyone in years. I see this as amazing.

Another example: OCD used to be so severe that she would stand at the door and

wait for the school bus, no matter if it was the weekend or not. That's alot of

standing. Waiting for hours for a school bus that won't come for two more days

is not fun. Now she signs to us the day when an event will happen in the future

and goes about her other activities rather than waiting for it for hours or

days. Another example: She used to either spin for hours or run in circles

for long periods of time. She has not spun or run in circles since 2001.

We are thrilled with the progress she has made. The time spent 'not' spiinning

or obsessing on a future event opens up possibilities for her to use her mind

and her thoughts to learning new things and to interact with others. This year

she was promoted to the second highest language group in her special needs high

school division. She also was the recipient of an award as best employee of the

quarter for the work experience she does. She is making progress and is a happy

and curious young lady. I would say that she no longer has serious behavior

issues. I believe she has overcome the majority of them. I find this

mind-boggling. She does though, continue to have some learning and language

issues. We have a sense of some ways to help her with some of these issues.

But some still evade us.

We attribute much of the behavioral improvement to the attention to GI issues

that we have put forth with help from her doctors. I think Tim and Debbie and

others are right that our kids may have pain that they experience but about

which they can not inform us with any clarity. In our case, I belive that

digestive issues have been instrumental in causing problems and attending to

them has been critical in leading to positive behavioral changes. Digestive

problems can not only cause pain or discomfort, they can also contribute to

malabsorption or other problems wherein vital nutrients are not utilized in the

system. To me, the most important areas of concern are the immune system, and

the digestive system. In our experience, and in my opinion, working to improve

these two areas has been important.

I think one of the greatest advancements made in the 90's was the connection of

the 'gut' to the mind. The decade of study of the brain uncovered many important

concepts. Alot of psychological issues may be related to a lack of or imbalance

of nutrients. In some cases the 'gut' is referred to as the second brain. IIt

is said: if the 'gut's' not happy, nobody's happy. What our kids need to be

healthy in terms of nutrition and in terms of insuring their systems are working

well, is not vastly understood yet. But there are similar conditions where

these kinds of issues are being looked at with positive and amazing results. I

put store in some of the research and findings from these other sources. It

makes sense to apply the information to our situation if it provides benefit.

My first evaluation consideration is always to immediately consider the safety

of an idea and to see that no harm could be done. If the concept fits those two

criteria, and it makes sense to me, I will consider proceeding with it.

While it made sense for our family to look outside of psychotropic or other

drugs, i certainly respect that each of our situations is diffierent. What is

right for one person may not be right for the next. What does make sense to me

is to openly discuss options.

[Guest guest]

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

------ Forwarded Message

Reply-To: <CHARGE >

Date: Thu, 4 Jan 2007 23:08:43 -0500

To: <CHARGE >

Conversation: Re:Antipsychotic Drugs

Subject: RE: Re:Antipsychotic Drugs

DEbbie,

what a great " chronicle " of 's experiences and insight. thanks.

pam

Re: Re:Antipsychotic Drugs

Tim,

I agree with you 100%. I think one of the most important things you said

here is the idea of working with someone on a good behavioral plan. This is

so often the biggest need and can work wonders in terms of the kids

understanding what is acceptable or not as well as anticipating what is

next, etc.

As you know, many of our kids present with significant behaviors on top of

their cognitive disabilities and sensory deficits. Our behaviorists work

hard to do exactly what you suggest and then there are still kids with

bigger issues which is where the medications come in. We have a very good

consulting psychiatrist who has seen a wide range of kids and young adults

and we feel comfortable with all that he has come to learn about CHARGE.

His work with parents and staff and kids has been great and we have had good

luck. Of course, meds are not the first choice and behavioral intervention

remains the mainstay.

pam

On 1/4/07 8:50 AM, " Hartshorne, S " <Tim.hartshorne@

<mailto:Tim.hartshorne%40CMICH.edu> CMICH.edu> wrote:

>

>

>

>

> Hi ,

>

> I have avoided responding to the medication issue because I tend to

> upset some people. It is so hard to be clear about this issue. Part of

> the problem with using the meds is that the doctors are working in the

> dark on this. There is very little research on the use of psychotropic

> medications with children. There is virtually nothing on their use with

> CHARGE. Lee Wachtel and I have an article coming out on this, but it is

> essentially parent report of what their children have taken, and there

> is nothing regarding how effective it is. Some psychiatrists are using

> a cocktail approach to psychotropics and you will find kids on several

> drugs simultaneously. There is no research to support this practice

> with children, but the reasoning is that for some diseases like AIDS a

> cocktail approach seems to work better than a single medication, and so

> maybe that will be true of psychiatric disorders as well. I find this

> approach frightening due to all the side effects. I have read some

> material recently that found behavioral approaches work better with

> children than the psychotropic meds. Of course the problem is finding

> someone to establish a really good behavioral intervention plan can be

> more difficult than finding a doctor willing to prescribe the meds. If

> you are interested in looking into a behavioral approach, I highly

> recommend a book by Ed Carr, Communication-based intervention for

> problem behavior. You can get it for under $25 at amazon.com. It gets

> a bit technical here and there, but over all I think it is pretty user

> friendly. If I were going to use psychotropics with (my son with

> CHARGE) I would go for a very low dose of an SSRI medication. I would

> use this in conjunction with good behavioral intervention. is a

> very low functioning 17-year-old. He has limited communication skills,

> and is cognitively probably around 3 years old. So he is different from

> a lot of the kids who are discussed on the list. His behavior is not

> too bad, but we have used a lot of behavioral interventions when he has

> demonstrated some negative behavior. But most of the time his

> behavioral episodes are pain related. I wish we were closer to

> understanding the sources of the behavioral difficulties. But one

> reasonable hypothesis is that the experience of chronic pain is a strong

> contributor. Headaches, tooth aches, ear aches, and intestinal pain

> can be extremely difficult to cope with, and are probably fairly common

> with our kids. All of the behaviors we see with CHARGE are reasonable

> reactions to long term chronic pain. I am not saying that I believe

> this is the cause of the behavioral difficulties in CHARGE, but it is

> likely a contributing factor, and I think as parents we need to be aware

> of this and try to manage pain in our children.

>

> I think I rambled here. This is a complicated issue, and there is no

> answer to the question of what psychotropic works best for CHARGE. What

> Lee and I found was that nearly every psychotropic out there has been

> tried.

>

> Tim Hartshorne

>

>

[Guest guest]

I have been away from the list for quite some time. Meredith has been

fighting to retain the vision in her only seeing eye, and it has been quite

a roller coaster ride. I have however been back and forth to the list, and

it's amazing whenever I peer in there seems to be a posting that is

pertinent to what is going on with Meri. We have been fighting the need for

drugs to help her with her obsessions, but I am finding it more and more

difficult as she enters puberty. She is ticking and obsessing over so much.

She actually didn't eat red meat for 4 years when she heard about the mad

cow disease, she literally just started eating red meat when the Taco Bell

crisis hit our area, and now we're back to square one. We have had the

stomach flu around our house, and you can imagine how Meredith is reacting

to this.

There still isn't a consensus as to whether or not she is going to start the

meds, I am terrified of the side effects, but I am equally terrified of her

continuing with her tics and OCD behaviors. She's in a regular ed setting

and the children are just not very good with her from a friendship stand

point. She knows that she doesn't go out like her siblings, she doesn't

have friends, and I feel like I've let her down in this area, but I can't

make the kids be social with her and I don't know where to go to find

friends for her. Sometimes I wonder if a regular school is the place for

her. But then her report cards come and she's getting straight A's and I

don't think it's right to take that away from her. Anyway, the point I was

making was how wonderful it is to always be able to check in and feel like

there are parents going through what I'm going through, and to be able to

see all the different view points to help make an informed decision. I just

wish staples made an easy button for our kids :-)

Audrey Dwyer-Wife to Bill-Mom to -15, Meredith-13(CHARGEr), & -12

RE: Re:Antipsychotic Drugs

I agree with both Pam and Tim, and from my experience meds won't work

without a strong behavioral plan. is almost 10, very high

functioning, verbal with very intelligent speech like a 9 year old, and has

a phenomenal behavioral program both at home and school. However, he

wouldn't be able to function without his Depakote and Wellbutrin. When we

tried him without the Wellbutrin, sticking with a very strict behavior

management system, the checking behavior overtook and counteracted any sort

of behavioral plan we have in place. was miserable. He was totally

consumed by his checking and he himself knew it. On the Wellbutrin, he

still does his checking, but it is reduced by approximately 80%, leaving

room in there for paying attention at school and learning and trying to be a

kid.

The other drug, Depakote, was originally used for his severe abdominal

migraines. The benefits of the drug are that he can live without the pain

of migraines and constantly dry heaving. This medication was started at 4

years old and is also used to treat his OCD which if he is not on the

Depakote, can't function. With these meds, and a great behavioral plan in

place, is able to live a semi-normal life.

He is also on Celexa which we see benefit from, but not sure exactly how

much benefit. He is on a very low dose. I'd like to see him off of this

one.

has endured many operations, procedures etc., and I know he has

pain. However, he can tell me when he has pain. He tells me he needs full

body x-rays to make sure he is okay. He worries a great deal about his own

health. I see his behaviors escalate when he has a cold or is going to get

sick. When the sickness finally comes, he begins to return back to

baseline, but not always. Sometimes after a sickness he would a medication

adjustment. I think his behavior escalates because he gets so nervous and

anxious about being sick. He also has a great deal of compassion for other

people who get sick. I have never seen a boy of his age have so much

concern for other people around him.

At his last surgery in August, we sat and talked for hours going over

everything that would happen beforehand. He couldn't calm himself until

after the surgery when he saw he was okay. He verbalized all of his

anxiousness etc. very intelligently using all the medical terms etc.

I think in our situation there is more of a chemical component which is the

piece the behavioral plan can't help.

Debbie Matasker

[Guest guest]

Audrey,

HOpefully by tuning in at the " right " time, you have gained some extra

insight/information/points of view that can help with your decision. It sounds

like Meri (what a great name) is very bright. Have you had a conversation with

her about the pros and cons of medication? If you think she can handle it, it

may be a way to open it up to her and see what she thinks and HOW she thinks

about this.

Regardless, good luck and when you find that easy button, let us all know!!

pam (from Boston/Perkins School)

RE: Re:Antipsychotic Drugs

I agree with both Pam and Tim, and from my experience meds won't work

without a strong behavioral plan. is almost 10, very high

functioning, verbal with very intelligent speech like a 9 year old, and has

a phenomenal behavioral program both at home and school. However, he

wouldn't be able to function without his Depakote and Wellbutrin. When we

tried him without the Wellbutrin, sticking with a very strict behavior

management system, the checking behavior overtook and counteracted any sort

of behavioral plan we have in place. was miserable. He was totally

consumed by his checking and he himself knew it. On the Wellbutrin, he

still does his checking, but it is reduced by approximately 80%, leaving

room in there for paying attention at school and learning and trying to be a

kid.

The other drug, Depakote, was originally used for his severe abdominal

migraines. The benefits of the drug are that he can live without the pain

of migraines and constantly dry heaving. This medication was started at 4

years old and is also used to treat his OCD which if he is not on the

Depakote, can't function. With these meds, and a great behavioral plan in

place, is able to live a semi-normal life.

He is also on Celexa which we see benefit from, but not sure exactly how

much benefit. He is on a very low dose. I'd like to see him off of this

one.

has endured many operations, procedures etc., and I know he has

pain. However, he can tell me when he has pain. He tells me he needs full

body x-rays to make sure he is okay. He worries a great deal about his own

health. I see his behaviors escalate when he has a cold or is going to get

sick. When the sickness finally comes, he begins to return back to

baseline, but not always. Sometimes after a sickness he would a medication

adjustment. I think his behavior escalates because he gets so nervous and

anxious about being sick. He also has a great deal of compassion for other

people who get sick. I have never seen a boy of his age have so much

concern for other people around him.

At his last surgery in August, we sat and talked for hours going over

everything that would happen beforehand. He couldn't calm himself until

after the surgery when he saw he was okay. He verbalized all of his

anxiousness etc. very intelligently using all the medical terms etc.

I think in our situation there is more of a chemical component which is the

piece the behavioral plan can't help.

Debbie Matasker

[Guest guest]

,

this is a great and very informative post=thanks. I also felt I could " see "

Kendra and that was a nice moment for me!

pam

Re: Re:Antipsychotic Drugs

The discussions about the antipsychotic drugs has been very interesting. I

think opened the door to some productive discussions.

To us, it seems that if such drugs help, there is an indication that something

is 'wrong'. If there is something 'wrong', I want to know what it is and see if

there is a way to treat it or heal it. In my opinion, many drugs often cover-up

symptoms rather than heal a condition. Most drugs do not make a pretense of

healing. Some drugs cause additional problems. Sometimes the additional

problems are not seen for quite some time. While drugs may not provide healing,

healing is a viable expectation in my mind for many of the behavior and learning

issues our kids seem to face.

While most of us would agree that we are totally dependent on medical science to

help our kids with heart or trachea problems, I would say that we may not be as

dependent on medical science to find answers for some of the behavior and

learning issues our kids experience.

In our particular situation, and I know we are all different and all of our kids

are different, we have been able to mostly avoid drugs. Our child still takes a

miniscule dose of one antidepressant. Otherwise, other approaches have made a

significant difference for her. An example: she was kicked out of a summer

school program due to biting. Wow. Now, due to certain changes in ways we

address issues, she hasn't bitten anyone in years. I see this as amazing.

Another example: OCD used to be so severe that she would stand at the door and

wait for the school bus, no matter if it was the weekend or not. That's alot of

standing. Waiting for hours for a school bus that won't come for two more days

is not fun. Now she signs to us the day when an event will happen in the future

and goes about her other activities rather than waiting for it for hours or

days. Another example: She used to either spin for hours or run in circles

for long periods of time. She has not spun or run in circles since 2001.

We are thrilled with the progress she has made. The time spent 'not' spiinning

or obsessing on a future event opens up possibilities for her to use her mind

and her thoughts to learning new things and to interact with others. This year

she was promoted to the second highest language group in her special needs high

school division. She also was the recipient of an award as best employee of the

quarter for the work experience she does. She is making progress and is a happy

and curious young lady. I would say that she no longer has serious behavior

issues. I believe she has overcome the majority of them. I find this

mind-boggling. She does though, continue to have some learning and language

issues. We have a sense of some ways to help her with some of these issues.

But some still evade us.

We attribute much of the behavioral improvement to the attention to GI issues

that we have put forth with help from her doctors. I think Tim and Debbie and

others are right that our kids may have pain that they experience but about

which they can not inform us with any clarity. In our case, I belive that

digestive issues have been instrumental in causing problems and attending to

them has been critical in leading to positive behavioral changes. Digestive

problems can not only cause pain or discomfort, they can also contribute to

malabsorption or other problems wherein vital nutrients are not utilized in the

system. To me, the most important areas of concern are the immune system, and

the digestive system. In our experience, and in my opinion, working to improve

these two areas has been important.

I think one of the greatest advancements made in the 90's was the connection of

the 'gut' to the mind. The decade of study of the brain uncovered many important

concepts. Alot of psychological issues may be related to a lack of or imbalance

of nutrients. In some cases the 'gut' is referred to as the second brain. IIt

is said: if the 'gut's' not happy, nobody's happy. What our kids need to be

healthy in terms of nutrition and in terms of insuring their systems are working

well, is not vastly understood yet. But there are similar conditions where

these kinds of issues are being looked at with positive and amazing results. I

put store in some of the research and findings from these other sources. It

makes sense to apply the information to our situation if it provides benefit.

My first evaluation consideration is always to immediately consider the safety

of an idea and to see that no harm could be done. If the concept fits those two

criteria, and it makes sense to me, I will consider proceeding with it.

While it made sense for our family to look outside of psychotropic or other

drugs, i certainly respect that each of our situations is diffierent. What is

right for one person may not be right for the next. What does make sense to me

is to openly discuss options.

[Guest guest]

Audrey,

I am a new entrant to the list. My daughter, Priya, 21, is a CHARGEr and her

greatest heartbreak is her inability to get `normal' friends to accept her.

She agonises and cries copiously from time to time. It affects me greatly,

as I too feel I have let her down. I'm still clueless about how I can help

her on this issue. Any ideas??

Alka

>

> I have been away from the list for quite some time. Meredith has been

> fighting to retain the vision in her only seeing eye, and it has been

> quite

> a roller coaster ride. I have however been back and forth to the list, and

> it's amazing whenever I peer in there seems to be a posting that is

> pertinent to what is going on with Meri. We have been fighting the need

> for

> drugs to help her with her obsessions, but I am finding it more and more

> difficult as she enters puberty. She is ticking and obsessing over so

> much.

> She actually didn't eat red meat for 4 years when she heard about the mad

> cow disease, she literally just started eating red meat when the Taco Bell

> crisis hit our area, and now we're back to square one. We have had the

> stomach flu around our house, and you can imagine how Meredith is reacting

> to this.

>

> There still isn't a consensus as to whether or not she is going to start

> the

> meds, I am terrified of the side effects, but I am equally terrified of

> her

> continuing with her tics and OCD behaviors. She's in a regular ed setting

> and the children are just not very good with her from a friendship stand

> point. She knows that she doesn't go out like her siblings, she doesn't

> have friends, and I feel like I've let her down in this area, but I can't

> make the kids be social with her and I don't know where to go to find

> friends for her. Sometimes I wonder if a regular school is the place for

> her. But then her report cards come and she's getting straight A's and I

> don't think it's right to take that away from her. Anyway, the point I was

> making was how wonderful it is to always be able to check in and feel like

> there are parents going through what I'm going through, and to be able to

> see all the different view points to help make an informed decision. I

> just

> wish staples made an easy button for our kids :-)

>

>

> Audrey Dwyer-Wife to Bill-Mom to -15, Meredith-13(CHARGEr), &

> -12

>

> RE: Re:Antipsychotic Drugs

>

> I agree with both Pam and Tim, and from my experience meds won't work

> without a strong behavioral plan. is almost 10, very high

> functioning, verbal with very intelligent speech like a 9 year old, and

> has

> a phenomenal behavioral program both at home and school. However, he

> wouldn't be able to function without his Depakote and Wellbutrin. When we

> tried him without the Wellbutrin, sticking with a very strict behavior

> management system, the checking behavior overtook and counteracted any

> sort

> of behavioral plan we have in place. was miserable. He was totally

> consumed by his checking and he himself knew it. On the Wellbutrin, he

> still does his checking, but it is reduced by approximately 80%, leaving

> room in there for paying attention at school and learning and trying to be

> a

> kid.

>

> The other drug, Depakote, was originally used for his severe abdominal

> migraines. The benefits of the drug are that he can live without the pain

> of migraines and constantly dry heaving. This medication was started at 4

> years old and is also used to treat his OCD which if he is not on the

> Depakote, can't function. With these meds, and a great behavioral plan in

> place, is able to live a semi-normal life.

>

> He is also on Celexa which we see benefit from, but not sure exactly how

> much benefit. He is on a very low dose. I'd like to see him off of this

> one.

>

> has endured many operations, procedures etc., and I know he has

> pain. However, he can tell me when he has pain. He tells me he needs full

> body x-rays to make sure he is okay. He worries a great deal about his own

> health. I see his behaviors escalate when he has a cold or is going to get

> sick. When the sickness finally comes, he begins to return back to

> baseline, but not always. Sometimes after a sickness he would a medication

> adjustment. I think his behavior escalates because he gets so nervous and

> anxious about being sick. He also has a great deal of compassion for other

> people who get sick. I have never seen a boy of his age have so much

> concern for other people around him.

>

> At his last surgery in August, we sat and talked for hours going over

> everything that would happen beforehand. He couldn't calm himself until

> after the surgery when he saw he was okay. He verbalized all of his

> anxiousness etc. very intelligently using all the medical terms etc.

>

> I think in our situation there is more of a chemical component which is

> the

> piece the behavioral plan can't help.

>

> Debbie Matasker

>

>

[Guest guest]

Thank you for your comment, Pam! I'm glad you found the post informative.

:-)

Re: Re:Antipsychotic Drugs

The discussions about the antipsychotic drugs has been very interesting. I

think opened the door to some productive discussions.

To us, it seems that if such drugs help, there is an indication that something

is 'wrong'. If there is something 'wrong', I want to know what it is and see if

there is a way to treat it or heal it. In my opinion, many drugs often cover-up

symptoms rather than heal a condition. Most drugs do not make a pretense of

healing. Some drugs cause additional problems. Sometimes the additional problems

are not seen for quite some time. While drugs may not provide healing, healing

is a viable expectation in my mind for many of the behavior and learning issues

our kids seem to face.

While most of us would agree that we are totally dependent on medical science

to help our kids with heart or trachea problems, I would say that we may not be

as dependent on medical science to find answers for some of the behavior and

learning issues our kids experience.

In our particular situation, and I know we are all different and all of our

kids are different, we have been able to mostly avoid drugs. Our child still

takes a miniscule dose of one antidepressant. Otherwise, other approaches have

made a significant difference for her. An example: she was kicked out of a

summer school program due to biting. Wow. Now, due to certain changes in ways we

address issues, she hasn't bitten anyone in years. I see this as amazing.

Another example: OCD used to be so severe that she would stand at the door and

wait for the school bus, no matter if it was the weekend or not. That's alot of

standing. Waiting for hours for a school bus that won't come for two more days

is not fun. Now she signs to us the day when an event will happen in the future

and goes about her other activities rather than waiting for it for hours or

days. Another example: She used to either spin for hours or run in circles for

long periods of time. She has not spun or run in circles since 2001.

We are thrilled with the progress she has made. The time spent 'not' spiinning

or obsessing on a future event opens up possibilities for her to use her mind

and her thoughts to learning new things and to interact with others. This year

she was promoted to the second highest language group in her special needs high

school division. She also was the recipient of an award as best employee of the

quarter for the work experience she does. She is making progress and is a happy

and curious young lady. I would say that she no longer has serious behavior

issues. I believe she has overcome the majority of them. I find this

mind-boggling. She does though, continue to have some learning and language

issues. We have a sense of some ways to help her with some of these issues. But

some still evade us.

We attribute much of the behavioral improvement to the attention to GI issues

that we have put forth with help from her doctors. I think Tim and Debbie and

others are right that our kids may have pain that they experience but about

which they can not inform us with any clarity. In our case, I belive that

digestive issues have been instrumental in causing problems and attending to

them has been critical in leading to positive behavioral changes. Digestive

problems can not only cause pain or discomfort, they can also contribute to

malabsorption or other problems wherein vital nutrients are not utilized in the

system. To me, the most important areas of concern are the immune system, and

the digestive system. In our experience, and in my opinion, working to improve

these two areas has been important.

I think one of the greatest advancements made in the 90's was the connection

of the 'gut' to the mind. The decade of study of the brain uncovered many

important concepts. Alot of psychological issues may be related to a lack of or

imbalance of nutrients. In some cases the 'gut' is referred to as the second

brain. IIt is said: if the 'gut's' not happy, nobody's happy. What our kids need

to be healthy in terms of nutrition and in terms of insuring their systems are

working well, is not vastly understood yet. But there are similar conditions

where these kinds of issues are being looked at with positive and amazing

results. I put store in some of the research and findings from these other

sources. It makes sense to apply the information to our situation if it provides

benefit. My first evaluation consideration is always to immediately consider the

safety of an idea and to see that no harm could be done. If the concept fits

those two criteria, and it makes sense to me, I will consider proceeding with

it.

While it made sense for our family to look outside of psychotropic or other

drugs, i certainly respect that each of our situations is diffierent. What is

right for one person may not be right for the next. What does make sense to me

is to openly discuss options.

[Guest guest]

Hi Priya,

I wish I had some ideas for you. It's a constant struggle. What

makes it difficult is that even children in her Helen Keller camp

seem to leave her out, because there are so many things, besides

vision, going on. I feel as you, that I have let her down somehow.

I know adults love her and appreciate how amazing she is, I am hoping

that as she gets older people will see her for her truly amazing

self. In the meantime, I'm sorry I can't offer more help.

Audrey Dwyer

>

> Audrey,

>

> I am a new entrant to the list. My daughter, Priya, 21, is a

CHARGEr and her

> greatest heartbreak is her inability to get `normal' friends to

accept her.

> She agonises and cries copiously from time to time. It affects me

greatly,

> as I too feel I have let her down. I'm still clueless about how I

can help

> her on this issue. Any ideas??

> Alka

>

>