Re: Kennedy Krieger/Trying to find helpful docs-HELP!!!

[Guest guest]

>>>I'm afraid with these OCD behaviors you've got two major

choices....behavioral therapy and/or meds.<<<<

Correction on this....I am presupposing she's fine medically and is on a good

diet. Medical issues and allergies to foods and environment can also contribute

heavily to OCD behaviors.

Sherry

Oh BTW....have you looked into any programs like www.NACD.org ? They are able to

work with you by video and to write a program and prioritize

interventions...including medical. They helped us enormously when was

young. (age2-9) they work with all ages. If you're into the Christian thing

there are offshoots of NACD with a Christian bent all over the country. I don't

agree with their takes on Autism but you may find them very helpful.

[Guest guest]

>>>before poor Margaret blows a gasket....There is no actual " proof " that Dr. C

is involved primarily in Risperdal promotion. I know Anne certainly felt that

way but that isn't to say everyone feels the same way. Perhaps he's collecting

data for a study involving the drug...I don't know. Does anyone? Like all

professionals he seems to have aquired both positive, negative and " meh "

reviews. I'm sorry you are not likely to find one professional who has all the

answers you seek.<<<<

May I please amend this to say Anne *AND OTHERS* felt Risperdal was being

promoted by KK. Not to keep beating a drugged horse but has anyone gone to KK

and NOT been offered an rx for Risperdal? Just curious...I have not heard of

anyone.

Sherry

[Guest guest]

Hi....I would be curious to know as well Sherry .....if anyone should not have

been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

anyway.......I am not sure of his whole motive etc...putting HIM aside and what

he does, heree are the things I would keep in mind before seeing anyone:

my husband has seen many adult patients on R and they feel lousy..he does his

best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

the doc in question told me it would help my son sleep and have a better sleep

study...actually I told him my son sleeps well and just would not sleep for the

sleep study...benadryl would be a little better perhaps for a one night sleep

study?? and no drug would have made my son sleep for the sleep study that we

had attempted ..he had made up his mind he did not want to be there...

The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

it is not the kind of drug you would want to give just to see if it helps your

kid communicate better ..the bad for that child would far outweigh the good....

for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

I just believe there are kids taking this who should not be....

my experience with KK was not hellish ...it was pleasant ...I kept putting forth

questions about Wesley's development and kept getting a response of how the R

drug might help..i had arguments against the drug..his heart being #1 and I felt

I was not heeded at all...

I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

so that is all I have to say on that subject...yes all drugs can have dangers

and side effects....but " all drugs " is not one category...you must look at each

one and also see how often these side effects are found...some have a rare side

effect ...some have side effects and dangers that more commonly occur....so the

argument " all drugs can be dangerous " is a bit of fluff that needs pulled aside

and a magnifying glass needs to be used for each drug....we as parents

especially of our kids' Dx have to use the magnifying glass ourselves ..it is

just the way it is dear Dr. Mommas.....and you already know that...

IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

Honestly if I had the strength and did not have my huge mission with Wesley I

would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

Annie

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[Guest guest]

Is Risperidol the same thing as Abilify?

The psychiatrist was considering putting on Abilify ( is my 6-year-old,

highly gifted child with Asperger's, OCD, Tic Disorder, ADHD etc etc etc).

No one has ever mentioned drugs for .

Sent from my iPhone

Hi....I would be curious to know as well Sherry .....if anyone should not have

been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

anyway.......I am not sure of his whole motive etc...putting HIM aside and what

he does, heree are the things I would keep in mind before seeing anyone:

my husband has seen many adult patients on R and they feel lousy..he does his

best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

the doc in question told me it would help my son sleep and have a better sleep

study...actually I told him my son sleeps well and just would not sleep for the

sleep study...benadryl would be a little better perhaps for a one night sleep

study?? and no drug would have made my son sleep for the sleep study that we

had attempted ..he had made up his mind he did not want to be there...

The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

it is not the kind of drug you would want to give just to see if it helps your

kid communicate better ..the bad for that child would far outweigh the good....

for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

I just believe there are kids taking this who should not be....

my experience with KK was not hellish ...it was pleasant ...I kept putting forth

questions about Wesley's development and kept getting a response of how the R

drug might help..i had arguments against the drug..his heart being #1 and I felt

I was not heeded at all...

I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

so that is all I have to say on that subject...yes all drugs can have dangers

and side effects....but " all drugs " is not one category...you must look at each

one and also see how often these side effects are found...some have a rare side

effect ...some have side effects and dangers that more commonly occur....so the

argument " all drugs can be dangerous " is a bit of fluff that needs pulled aside

and a magnifying glass needs to be used for each drug....we as parents

especially of our kids' Dx have to use the magnifying glass ourselves ..it is

just the way it is dear Dr. Mommas.....and you already know that...

IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

Honestly if I had the strength and did not have my huge mission with Wesley I

would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

Annie

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[Guest guest]

, My son has taken Risperidal for behaviors (not for OCD). This med is not

for OCD behaviors. You would be looking at Prozac,or SSRI meds for OCD

behaviors. Before you do that as a suggestion you might want to have tested

for PANDAS. Once I got my sons PANDAS under control the OCD behaviors went

away. My son has taken Abilify for about 2yrs and it has never helped like the

Risperidal did in the beginning. After 2 yrs of being on Risperidal the med quit

working even though we tried increasing it and that is why we switched to

Abilify. Meds like serouquel have helped some kids on the message board but it

made my son very difficult to deal with. Tic disorders can be caused by meds

like Risperidal, Abilify, serouquel,etc. I am taking the natural approach with

my son right now. It was working until December when he got a staph infection,

the flu, and the antibiotics, anti virus meds always make my son mean. Slowly

my son is returning to the way he was before the illness. Something you might

want to try before the meds is vitamin B-6 with magnesium. Dr. Bernard Rimland

did research on b-6/with magnesium in helping with behaviors. Here is a quote

from Dr. Rimlands research, " The first treatment Dr. Rimland investigated, based

on reports from parents of autistic children, was high-dose vitamin B6. Other

authorities in the autism field considered the idea that a vitamin could correct

a brain disorder to be preposterous, but time and research proved them wrong. To

date, 22 studies (including 13 double-blind studies) show that vitamin B6,

typically combined with magnesium, benefits a large percentage of autistic

children. " Here is the link. Cyndi B

https://www.autism.com/ari/rimland/rimlandobitarticle.htm

>

>

> Hi....I would be curious to know as well Sherry .....if anyone should not have

been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

> anyway.......I am not sure of his whole motive etc...putting HIM aside and

what he does, heree are the things I would keep in mind before seeing anyone:

> my husband has seen many adult patients on R and they feel lousy..he does his

best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

> the doc in question told me it would help my son sleep and have a better sleep

study...actually I told him my son sleeps well and just would not sleep for the

sleep study...benadryl would be a little better perhaps for a one night sleep

study?? and no drug would have made my son sleep for the sleep study that we

had attempted ..he had made up his mind he did not want to be there...

> The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

> My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

> my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

> in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

> but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

> it is not the kind of drug you would want to give just to see if it helps your

kid communicate better ..the bad for that child would far outweigh the good....

> for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

> I just believe there are kids taking this who should not be....

> my experience with KK was not hellish ...it was pleasant ...I kept putting

forth questions about Wesley's development and kept getting a response of how

the R drug might help..i had arguments against the drug..his heart being #1 and

I felt I was not heeded at all...

> I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

> so that is all I have to say on that subject...yes all drugs can have dangers

and side effects....but " all drugs " is not one category...you must look at each

one and also see how often these side effects are found...some have a rare side

effect ...some have side effects and dangers that more commonly occur....so the

argument " all drugs can be dangerous " is a bit of fluff that needs pulled aside

and a magnifying glass needs to be used for each drug....we as parents

especially of our kids' Dx have to use the magnifying glass ourselves ..it is

just the way it is dear Dr. Mommas.....and you already know that...

> IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

>

> Honestly if I had the strength and did not have my huge mission with Wesley I

would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

>

> Annie

>

>

>

>

>

>

>

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>

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> Hotmail: Trusted email with Microsoft’s powerful SPAM protection.

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[Guest guest]

, Here is a link that talks about Medications used to help with behaviors.

Cyndi B

http://pediatrics.about.com/od/autism/a/05_autism_rx_4.htm

> >

> >

> > Hi....I would be curious to know as well Sherry .....if anyone should not

have been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

> > anyway.......I am not sure of his whole motive etc...putting HIM aside and

what he does, heree are the things I would keep in mind before seeing anyone:

> > my husband has seen many adult patients on R and they feel lousy..he does

his best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

> > the doc in question told me it would help my son sleep and have a better

sleep study...actually I told him my son sleeps well and just would not sleep

for the sleep study...benadryl would be a little better perhaps for a one night

sleep study?? and no drug would have made my son sleep for the sleep study that

we had attempted ..he had made up his mind he did not want to be there...

> > The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

> > My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

> > my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

> > in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

> > but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

> > it is not the kind of drug you would want to give just to see if it helps

your kid communicate better ..the bad for that child would far outweigh the

good....

> > for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

> > I just believe there are kids taking this who should not be....

> > my experience with KK was not hellish ...it was pleasant ...I kept putting

forth questions about Wesley's development and kept getting a response of how

the R drug might help..i had arguments against the drug..his heart being #1 and

I felt I was not heeded at all...

> > I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

> > so that is all I have to say on that subject...yes all drugs can have

dangers and side effects....but " all drugs " is not one category...you must look

at each one and also see how often these side effects are found...some have a

rare side effect ...some have side effects and dangers that more commonly

occur....so the argument " all drugs can be dangerous " is a bit of fluff that

needs pulled aside and a magnifying glass needs to be used for each drug....we

as parents especially of our kids' Dx have to use the magnifying glass ourselves

...it is just the way it is dear Dr. Mommas.....and you already know that...

> > IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

> >

> > Honestly if I had the strength and did not have my huge mission with Wesley

I would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

> >

> > Annie

> >

> >

> >

> >

> >

> >

> >

> > Going Green: Your Yahoo! Groups resource for green living

> >

> >

> >

> >

> >

> >

> > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > .

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > Hotmail: Trusted email with Microsoft’s powerful SPAM protection.

> > http://clk.atdmt.com/GBL/go/196390706/direct/01/

> >

> >

[Guest guest]

Risperdal and Abilify are two different drugs. I have taken them both.

Respiridone will increase your anxiety, feelings of alienation/detachment, and

affect urination. Abilify is more effective in reducing psychotic features and

anxiety but gives you the feeling you are walking through water. I'd choose

Abilify over Risperdol but only in low doses.

Hope that's helpful.

Simone

>

>

> Hi....I would be curious to know as well Sherry .....if anyone should not have

been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

> anyway.......I am not sure of his whole motive etc...putting HIM aside and

what he does, heree are the things I would keep in mind before seeing anyone:

> my husband has seen many adult patients on R and they feel lousy..he does his

best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

> the doc in question told me it would help my son sleep and have a better sleep

study...actually I told him my son sleeps well and just would not sleep for the

sleep study...benadryl would be a little better perhaps for a one night sleep

study?? and no drug would have made my son sleep for the sleep study that we

had attempted ..he had made up his mind he did not want to be there...

> The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

> My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

> my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

> in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

> but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

> it is not the kind of drug you would want to give just to see if it helps your

kid communicate better ..the bad for that child would far outweigh the good....

> for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

> I just believe there are kids taking this who should not be....

> my experience with KK was not hellish ...it was pleasant ...I kept putting

forth questions about Wesley's development and kept getting a response of how

the R drug might help..i had arguments against the drug..his heart being #1 and

I felt I was not heeded at all...

> I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

> so that is all I have to say on that subject...yes all drugs can have dangers

and side effects....but " all drugs " is not one category...you must look at each

one and also see how often these side effects are found...some have a rare side

effect ...some have side effects and dangers that more commonly occur....so the

argument " all drugs can be dangerous " is a bit of fluff that needs pulled aside

and a magnifying glass needs to be used for each drug....we as parents

especially of our kids' Dx have to use the magnifying glass ourselves ..it is

just the way it is dear Dr. Mommas.....and you already know that...

> IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

>

> Honestly if I had the strength and did not have my huge mission with Wesley I

would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

>

> Annie

>

>

>

>

>

>

>

> Going Green: Your Yahoo! Groups resource for green living

>

>

>

>

>

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

>

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>

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> .

>

>

>

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>

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>

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> _________________________________________________________________

> Hotmail: Trusted email with Microsoft’s powerful SPAM protection.

> http://clk.atdmt.com/GBL/go/196390706/direct/01/

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>

[Guest guest]

I see homeschool mentioned and the possiblity of behavior seen at school

coming into the home, Its not easy to homeschool but depending on the

state requirmeents you can teach by whatever method you choose. I did not use

worksheets, I used hands on materials and she learned a lot faster. You dont

have to do it the schools way, you do it your way. Our state requires so

many hours per day and days per year but that is 12 months, you can do more

just not less. We went year round and that helped. We just did not need to

send in attendance sheets for the extra days. I used toys, manipulatives,

videos, pictures, games, and varied them to keep interest. I insisted on

the behaviors that were important to me and the advantage was some behaviors

were to avoid doing school work, By the time they deal with the behavior at

school that subject time is over or the day is over. At home its not, you

can wait to start school til the behavior subsides or behavior can be your

goal for the day and not academics. Since it does not work to avoid school

that helps stop the behavior too. I used videos as a reward with my

daughter, Finish your school work and then you get a video. The first 30

minutes

of video was my choice and educational, the next was hers and could be

whatever. It ended up being educational most of the time too but it was still

her choice. I also used computer educational games as reward for

completing school task.

It worked very well but it is work and you do have to deal with them

24/7 unless someone can help out and give you a break.

There are places you can order traditional curriculum on whatever grade

level you want if you choose that route and can still do them at your own pace

or his/her pace. And you can add hands on or physically active activities

to them too. Counting maybe making a hopscotch board with numbers and

having them jump to the number or throw a bean bag on the number. Add two

numbers correctly and get to have a turn at throwing the basketball in a hoop.

One of those over the door indoor hoops works well for that. My daughter

had a lot of energy at that age and physical activities worked better for

her and kept her interest longer.

It was also quieter at home I found her classrooms at school over

stimulating with so much stuff on the walls it seemed to close in on you, and

that may be contributing to the behavior there too. Or the lighting in the

school.

She is an adult now and on seizure meds and that seems to have slowed a lot

of the physical activity but at school age using physical activities was

much more successful than worksheets or book work unless your goal is to get

him back into the traditional school setting and that was not my goal.

Mine was to get the knowledge in her at a leve she could understand, to

increase communication with consistent methods for doing so and worry about

traditional school setting later if and when I needed that.

Another advantage of the home school was communication, Each year as

different teacher had a different idea of what to use with her, Some wanted sign

language some communication board, It was a battle each year, Home school

was the same each year and she was able to let us know what she wanted and

what she knew.

I found it less stressful to teach her than to fight with the school

system, but it depends on your child. There are some I would find hard to teach

and it would be stressful on me and the child. And there are some who just

dont feel they can handle teaching. Its not for everyone but it worked for

me.

[Guest guest]

Thanks!!!

It's a very difficult decision to make. is a usually pleasant, engaging

kid at home but at school has these meltdowns, aggression, SIB. I would rather

send him to a therapeutic school than medicate him. I'm not sure homeschooling

is an option for us. I don't know if, with the same pressures he gets at school

(worksheets, having to switch tasks), we'd start to see the same aggression at

home.

I just don't know what to do. The Buspar seems to be making him more

aggressive.

Sent from my iPhone

On Jan 16, 2010, at 9:34 PM, " cynthiamiltonburns "

wrote:

, Here is a link that talks about Medications used to help with behaviors.

Cyndi B

http://pediatrics.about.com/od/autism/a/05_autism_rx_4.htm

> >

> >

> > Hi....I would be curious to know as well Sherry .....if anyone should not

have been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

> > anyway.......I am not sure of his whole motive etc...putting HIM aside and

what he does, heree are the things I would keep in mind before seeing anyone:

> > my husband has seen many adult patients on R and they feel lousy..he does

his best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

> > the doc in question told me it would help my son sleep and have a better

sleep study...actually I told him my son sleeps well and just would not sleep

for the sleep study...benadryl would be a little better perhaps for a one night

sleep study?? and no drug would have made my son sleep for the sleep study that

we had attempted ..he had made up his mind he did not want to be there...

> > The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

> > My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

> > my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

> > in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

> > but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

> > it is not the kind of drug you would want to give just to see if it helps

your kid communicate better ..the bad for that child would far outweigh the

good....

> > for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

> > I just believe there are kids taking this who should not be....

> > my experience with KK was not hellish ...it was pleasant ...I kept putting

forth questions about Wesley's development and kept getting a response of how

the R drug might help..i had arguments against the drug..his heart being #1 and

I felt I was not heeded at all...

> > I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

> > so that is all I have to say on that subject...yes all drugs can have

dangers and side effects....but " all drugs " is not one category...you must look

at each one and also see how often these side effects are found...some have a

rare side effect ...some have side effects and dangers that more commonly

occur....so the argument " all drugs can be dangerous " is a bit of fluff that

needs pulled aside and a magnifying glass needs to be used for each drug....we

as parents especially of our kids' Dx have to use the magnifying glass ourselves

...it is just the way it is dear Dr. Mommas.....and you already know that...

> > IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

> >

> > Honestly if I had the strength and did not have my huge mission with Wesley

I would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

> >

> > Annie

> >

> >

> >

> >

> >

> >

> >

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> >

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> >

> >

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> >

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> > .

> >

> >

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> > __________________________________________________________

> > Hotmail: Trusted email with Microsoft’s powerful SPAM protection.

> > http://clk.atdmt.com/GBL/go/196390706/direct/01/

> >

> >

[Guest guest]

Maddie has been on a VERY small dose of abilify for 6 years, after being on

Risperdal for one year. We saw more changes on risperdal, but that could be

because we were in SUCH a bad place for a while and risperdal stopped her SIB

almost immediately. We tried the buspar in the very beginning and only kept

her on it a few days. I told I understood having to give a certain

med time to work, but that if I saw ill effects, I was taking her off. She

has been on prozac for OCD since the summer. Saw some progress, however

slight, but we seem to have tapered off. I upped the dose a bit, but didn't

like the effects, so we're back to low dose and at status quo.

Just our experience. If you are having problems with behavior and want to try

a med, I would recommend making sure that the behaviors aren't related to some

communication issue. For instance, if your child is exhibiting certain

behaviors only at school, there's probably a good chance you need to do some

investigating there.

Hugs,

Donna

Re: Kennedy Krieger/Trying to find helpful docs-HELP!!!

Risperdal and Abilify are two different drugs. I have taken them both.

Respiridone will increase your anxiety, feelings of alienation/detachment, and

affect urination. Abilify is more effective in reducing psychotic features and

anxiety but gives you the feeling you are walking through water. I'd choose

Abilify over Risperdol but only in low doses.

Hope that's helpful.

Simone

>

>

> Hi....I would be curious to know as well Sherry .....if anyone should not have

been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one

mom and myself..and the other kid does not have the ASD Dx...and the children do

not have self injurious behaviors...

> anyway.......I am not sure of his whole motive etc...putting HIM aside and

what he does, heree are the things I would keep in mind before seeing anyone:

> my husband has seen many adult patients on R and they feel lousy..he does his

best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

> the doc in question told me it would help my son sleep and have a better sleep

study...actually I told him my son sleeps well and just would not sleep for the

sleep study...benadryl would be a little better perhaps for a one night sleep

study?? and no drug would have made my son sleep for the sleep study that we

had attempted ..he had made up his mind he did not want to be there...

> The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

> My husband did say that there are extreme cases where he could see the drug

being used i.e. cases like Margaret's child who would injure himself....

> my husband spent time some years back at s Hopkins right next to Kennedy

Krieger and he knows well that a big chunk of salary in research institutes

comes form drug companies....he said it can be very hard to remain ethical since

a big chunk of what comes in your pockets as a physician comes from those

companies sponsoring your research. And for your research to be valid you need

as many subjects taking the drug as you can get....also just for mentioning the

drug on a speaking circuit puts $$ in the pocket...

> in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

> but with our vulnerable population of babes who cannot speak and who have a

diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

> it is not the kind of drug you would want to give just to see if it helps your

kid communicate better ..the bad for that child would far outweigh the good....

> for a kid banging his head and injuring himself..the scale balances out and

there is justification for the drug ...

> I just believe there are kids taking this who should not be....

> my experience with KK was not hellish ...it was pleasant ...I kept putting

forth questions about Wesley's development and kept getting a response of how

the R drug might help..i had arguments against the drug..his heart being #1 and

I felt I was not heeded at all...

> I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

> so that is all I have to say on that subject...yes all drugs can have dangers

and side effects....but " all drugs " is not one category...you must look at each

one and also see how often these side effects are found...some have a rare side

effect ...some have side effects and dangers that more commonly occur....so the

argument " all drugs can be dangerous " is a bit of fluff that needs pulled aside

and a magnifying glass needs to be used for each drug....we as parents

especially of our kids' Dx have to use the magnifying glass ourselves ..it is

just the way it is dear Dr. Mommas.....and you already know that...

> IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

>

> Honestly if I had the strength and did not have my huge mission with Wesley I

would delve further into the R thing as I think it is a great injustice to use

little vulnerable children of desperate moms as subjects without enough

justification for it....

>

> Annie

>

>

>

>

>

>

>

> Going Green: Your Yahoo! Groups resource for green living

>

>

>

>

>

>

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> .

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________________

> Hotmail: Trusted email with Microsoft’s powerful SPAM protection.

> http://clk.atdmt.com/GBL/go/196390706/direct/01/

>

>

[Guest guest]

There is also one on our yahoogroup site that is title ARticle from Dr. Capone.

It has all the behaviors, meds, etc. Good bit of information to check on.

Holly

Re: Kennedy Krieger/Trying to find helpful docs-HELP!!!

, Here is a link that talks about Medications used to help with behaviors.

Cyndi B

http://pediatrics.about.com/od/autism/a/05_autism_rx_4.htm

> >

> >

> > Hi....I would be curious to know as well Sherry .....if anyone should not

have been prescribed it, my son would be one of that category....he had a heart

condition yet unrepaired and getting more serious ...every mom in this area who

goes to him who I know of (about 7) gives the drug to her child...except one mom

and myself..and the other kid does not have the ASD Dx...and the children do not

have self injurious behaviors...

> > anyway.......I am not sure of his whole motive etc...putting HIM aside and

what he does, heree are the things I would keep in mind before seeing anyone:

> > my husband has seen many adult patients on R and they feel lousy..he does

his best to get them off of it....it is in my husband's words " a dangerous "

drug...it messes up the metabolism and thus people do gain weight....this is not

the means I would choose for my little peanut to gain weight....I need to find

his root cause and deal with it from there....

> > the doc in question told me it would help my son sleep and have a better

sleep study...actually I told him my son sleeps well and just would not sleep

for the sleep study...benadryl would be a little better perhaps for a one night

sleep study?? and no drug would have made my son sleep for the sleep study that

we had attempted ..he had made up his mind he did not want to be there...

> > The R drug increases insulin resistance and leads to diabetes in many

cases....my husband has not seen a patient on the R drug that was happy to be on

it...with little voiceless children or big voiceless children how can we know

how they feel? And diabetes as a side effect is not something to be taken

lightly....

> > My husband did say that there are extreme cases where he could see the

drug being used i.e. cases like Margaret's child who would injure himself....

> > my husband spent time some years back at s Hopkins right next to

Kennedy Krieger and he knows well that a big chunk of salary in research

institutes comes form drug companies....he said it can be very hard to remain

ethical since a big chunk of what comes in your pockets as a physician comes

from those companies sponsoring your research. And for your research to be valid

you need as many subjects taking the drug as you can get....also just for

mentioning the drug on a speaking circuit puts $$ in the pocket...

> > in endocrinology it may not be as sticky as many people come with similar

problems and you can use the same drug for these and come to conclusions....

> > but with our vulnerable population of babes who cannot speak and who have

a diversity of symptoms and behaviors and problems....giving the same drug does

not make sense....

> > it is not the kind of drug you would want to give just to see if it helps

your kid communicate better ..the bad for that child would far outweigh the

good....

> > for a kid banging his head and injuring himself..the scale balances out

and there is justification for the drug ...

> > I just believe there are kids taking this who should not be....

> > my experience with KK was not hellish ...it was pleasant ...I kept putting

forth questions about Wesley's development and kept getting a response of how

the R drug might help..i had arguments against the drug..his heart being #1 and

I felt I was not heeded at all...

> > I like to be at peace with everyone......wimpy people pleaser

personality.....but I wrote a passionate letter and spoke on the phone too to

put forth my valid complaint and I did feel a lot better that I had done so....

> > so that is all I have to say on that subject...yes all drugs can have

dangers and side effects....but " all drugs " is not one category...you must look

at each one and also see how often these side effects are found...some have a

rare side effect ...some have side effects and dangers that more commonly

occur....so the argument " all drugs can be dangerous " is a bit of fluff that

needs pulled aside and a magnifying glass needs to be used for each drug....we

as parents especially of our kids' Dx have to use the magnifying glass ourselves

...it is just the way it is dear Dr. Mommas.....and you already know that...

> > IF I were to travel far to Kennedy Krieger, I would try to make other

appointments such as with the Occupational therapist Lashno as at least if

you were disappointed with the DS clinic you would have still received some

other input that may be valuable...there used to be a great PT there but she

retired....Pat Winders..I am sure you have heard and perhaps met her....if you

ever see her famous article, " WHy PT? " Wesley is the infant pictured in it and I

am the ditz who asked her the question mentioned in the article...

> >

> > Honestly if I had the strength and did not have my huge mission with

Wesley I would delve further into the R thing as I think it is a great injustice

to use little vulnerable children of desperate moms as subjects without enough

justification for it....

> >

> > Annie

> >

> >

> >

> >

> >

> >

> >

> > Going Green: Your Yahoo! Groups resource for green living

> >

> >

> >

> >

> >

> >

> > Switch to: Text-Only, Daily Digest â?¢ Unsubscribe â?¢ Terms of Use

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > .

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________________

> > Hotmail: Trusted email with Microsoftâ?Ts powerful SPAM protection.

> > http://clk.atdmt.com/GBL/go/196390706/direct/01/

> >

> >