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My son (13) has been on Risperdal for 2 years. He had such rages (from

anxiety) both at home and in school that he had to leave public school (6th

grade) and go to a special school. The addition of the Risperdal to his Luvox

and Clonidine has made a big difference. He is now a straight A student and

we are scheduling a PPT for December to discuss the transition back to middle

school for the 2nd half of 8th grade. His new social worker at school this

year told him he wasn't sure why was at that school because there is no

evidence this year of any behavior issues at all -- not one incident. Life at

home is also incrediblely improved. He is much more motivated to be active

(that might be because his depression is much improved also). He just

finished fall crew (8 person boats) and is back doing karate after stopping

2-1/2 years ago.

Risperdal can cause some sedation but has gotten past that. The biggest

side effect can be increased appetite & weight gain. did put on weight

but also was very inactive -- his main activity used to be eating and

watching TV. He went to sleep away camp to loose weight this summer (his

idea) and was very sucessful. He had no behavior problems, got along well

with everyone and lost weight. He has put some back on because he has access

to food at home (even if it is healthy, he still wants to eat more than I

like).

I think the Risperdal was " key " to helping get some control, and

internalize the bahavior modification things that he learned at his school.

If you asked me 2 years ago that I would have my child back from the OCD hell

of rages etc. I wouldn't have believed you, but I do, and it is amazing. He

didn't have homework on Halloween but wanted to work on learning more

pre-algebra so he did math for about 45 minutes before dinner -- this was the

first year he didn't go trick or treating.

I hope this helps. I will be thinking of you because I have been down that

road, and I know that it seems unending right now. I found a button a few

years ago that said " Do to circumstances beyond our control, the light at the

end of the tunnel has been turned off. " . Well, the light has been turned back

on at my house these days.

Anne in CT

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Anne--

I know your e mail wasnt directed to me, but it gave me renewed hope anyway-- I think we took off the Risperdal, instead of increasing it because of the weight gain, and while this makes some sense, perhaps it is time to try this again instead of hospitalization! Wish there was something they could do about the weight gain-- think the inactivity is a side effect as well.

Ellen

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Dear Anne,

What great news from Connecticut! Tell how proud we all are of

him. How amazing that the new school has had no incidents to report. I

remember that night in D.C. and how frustrated you were. It must be so

comforting to feel that you have your child back again and even better than

ever.

By the way - and this is for the list as well - mark December 7 at 8 PM

on CBS on your calendars. 48 Hours is planning a second program on OCD -

this time featuring not only , but also Dr. Jenike and the Institute in

Boston. They followed one of the patients there on some of her E & RP

therapy.

Take care,

Jackie

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In a message dated 11/5/00 9:20:07 AM Pacific Standard Time,

egroups writes:

> No, no no. Elie is taking .5 mg Risperdal at night AND 1mg. Risperdal in

> the morning for school.

>

> Sara

>

OH! I get it......but is on 1.5mg in a.m. AND 1.5mg at

bedtime.....quite a bit, don't you think??

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In a message dated 11/05/2000 2:56:26 PM Central Standard Time,

Ltb3105@... writes:

<< ean is on 1.5mg in a.m. AND 1.5mg at

bedtime.....quite a bit, don't you think??

>>

is on .5 mg in the AM, .5 mg after lunch, and 1.5 mg at bedtime.

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In a message dated 11/20/00 1:26:47 PM Pacific Standard Time,

egroups writes:

> Poor little is still asleep at 2:30 PM after .25 mg risperdal last

>

Whoa, Sherry! Did the child not attend school today? Boy, the med's seem to

affect each kid a little differently.....hope everyone adds their 2 cents on

the Risperdal info I'm needing...

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laura,

i am still overwhelmed by sean....that kid seems to set the record for the

amount of meds any kid has taken. holy cow..... and he seems to have this

rotation , good day, bad day, drive mom nuts,good for teacher, noncompliant

at daycare and then reverses, good for mom, drives teacher nuts. lolol the

little texas tornado he is, but he is soooooo cute...same with ashton, what

is with the guys, knock on wood she in on a good streak at school and home,

minus the poop party we had....lmao i am finding with the seroquel, she gets

hyper/very loud and stimmy around 430-5pm.... but its tolerable to me, just

not to cameron,she does get very loud and hurts his ears....poor kid is stuck

hera sister he cant always tolerate....lmao so is life...hang in there laura

and iam praying for you and sean.... can't offer any advice on the

risperadol, havent been on it yet....ask me about clonidine, dexedrine,

thorazodone, mellaril, ritalin and those kinds....

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laura,

i am still overwhelmed by sean....that kid seems to set the record for the

amount of meds any kid has taken. holy cow..... and he seems to have this

rotation , good day, bad day, drive mom nuts,good for teacher, noncompliant

at daycare and then reverses, good for mom, drives teacher nuts. lolol the

little texas tornado he is, but he is soooooo cute...same with ashton, what

is with the guys, knock on wood she in on a good streak at school and home,

minus the poop party we had....lmao i am finding with the seroquel, she gets

hyper/very loud and stimmy around 430-5pm.... but its tolerable to me, just

not to cameron,she does get very loud and hurts his ears....poor kid is stuck

hera sister he cant always tolerate....lmao so is life...hang in there laura

and iam praying for you and sean.... can't offer any advice on the

risperadol, havent been on it yet....ask me about clonidine, dexedrine,

thorazodone, mellaril, ritalin and those kinds....

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Ben has been on the Risperdal since March. We were hoping it would

help him focus or concentrate better. He was up to .75 mg only at night

(we tried it in the morning and it seemed to sedating that way). He did

experience about a 10# weight gain since the spring. We have been very

aggressive in monitoring his eating and have increased his physical

activity, so I hope it has leveled off. In the last two weeks we cut it

back to .5 mg only at night to see if his excessive noise making is tied in

to the language stimulation that seems to come from the Risperdal.

The very good news is that PB is talking a LOT more. He seems to be able

to make connections more often. He is playing with more imagination and

seems to continue to work his way through some developmental stages that he

missed. He is now playing with trucks and cars; he loves to change his

clothes a lot- he is trying on dad's clothes more. His eye contact is

better and he wants people to pay attention to him now. He enjoys routine

daily activities and is trying to do more things independently. He is also

a little less hyped with his sensory needs. He lets me cut hair and

toenails much more quickly and without nearly the same amount of fuss.

His obsessive-compulsive type behaviors have not changed drastically, but I

noticed they improved a little more at the higher level. (Now that we cut

back a little, he seems to be a little less noisey but conversely he is

playing wiht shopping bags again and turning his tape player off and on.

Now, we added a teeny weeny bit of Celexa (an SSRI) - he takes 5 mg (1/4

pill) every three days. This has mellowed him out a bit and I am wondering

if it is also helping the risperdal to work better. He is very tuned in,

better than he ever has. he continually " scans " new places to look for

familiar words or things. He is trying to read people's T-shirts (he now

knows that he might recognize some logos) and he seems to be listening for

words that he understands. He is showing me things and naming them,

seeking my approval.

We talked about hinm taking Zyprexa- doc thought it would be less

" activating " for PB. However, I told him that what I had read about

Zyprexa was that it caused even more weight gain and I was reading of kids

who went from Zyprexa to Risperdal so they didn't have the excessive weight

gain. So we have stayed away altogether.

Sherrie, I do not understand why your doctor would put introduce on

all of those meds at the same time! Is this a new protocol? Our doc

always tells us " Start low and go slow " with the dosage and timing of

oncrements. We have always understood that you only start one med at a

time so that you know as much as possible just what the drug is doing.

After being on two drugs, each time you add more, you have less control

over what each is doing.

I call in to our doc (our pediatrician) once a week to report on behaviors.

We have kept very close tabs this way. Then our doc sees PB " just to lay

my hands on him " he says - about once every two months. This close

supervision has given us a great deal of confidance about what we are doing

with the drugs. I have changed my mind the day we were to start a new med

and told the doc I wasn't comfortable with it and he honors our wishes. We

have also made a decision to take him off of something after just one day,

if we didn't like what we were seeing. Our dr. has also been very frank

about the fact that this is still a crap shoot, to be prescribing these

kinds of drugs. But he sees a lot of kids now with disabilties, including

autsim and DS. (I think PB is the only kid he sees with an actual dual dx,

but he is thinking that kids who are now grown are probably both.)

Good luck, Hon. I don't regret our decision to work with meds as well as

all of the other stuff we do. I believe that PB's language has been

greatly helped by the meds, and I also think his social awareness has

improved dramatically.

MB

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Just for info--Josh almost 12 takes .25 AM & .25 mid afternoon. Only

side-effect is he EATS!! Gained 16 pounds first 3 weeks on it..We added

in Ritalin to get rid of eating..helps some, but not enough. No sleepy

effects... Joy

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Wow! Don't I wish!

Melinda S.

Dallas

> Just for info--Josh almost 12 takes .25 AM & .25 mid afternoon. Only

> side-effect is he EATS!! Gained 16 pounds first 3 weeks on it..We

added

> in Ritalin to get rid of eating..helps some, but not enough. No

sleepy

> effects... Joy

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In a message dated 2/24/02 7:19:21 AM Pacific Standard Time,

writes:

> -Brook just turned 12yrs this month and

> he weighed 77lbs at his last appointment, he had lost about 3-4 lbs after a

>

> trial with Zoloft. His Dr. wanted us to start Brook on 1 mg, but after

> talking to people here, Beth, was one, I decided to go with half of

> that

> dose. Do you still think that is too high to start? I think Ben is

> on

> a dose a little higher than .5mg presently.

>

>

Not high at all, according to ! Last year, he weighed less than 50 lbs.

and was on .5mg for just one dose!

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In a message dated 4/10/02 6:34:39 PM Pacific Daylight Time,

writes:

> . We

> just raised Brook's dose from .75mg to 1mg 10 days ago and are going to

> give

> it some more time before we raise it again. I'm also prepared to lower his

> dose though if I think things are getting worse. What's the total that

>

> is taking of Risperdal?

>

Marisa, 's was just upped too. Now, he gets .50mg in the a.m. before

school, another .50mg at lunchtime at school, and a full 1mg at night before

going to bed.....this is also along with the Trileptal!!!!

I still miss the wonderful improvement the Zyprexa made :( however, since

we've stopped it, 's lost three pounds already and his appetite and food

obsessions are gone! Give and take....sigh........

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Hi Margaret, thanks for sharing this information. I clearly saw huge

changes on the positive side when my daughter was on the

risperidone. The seizures were the only thing that made me stop

using it for her. It was so sad to see the return of all the abusive

behaviours when she came off the risperidone. It is a good

medication and sure can make a huge difference for our kids.

Take care, Cheryl

mom to Angel, 6, ds-asd, and Allie 14, pdd-nos

> <<I spoke with Allie's child psychiatrist today and he wants to see

her

> >within the next week or two. We know we need to use something as

she

> >has now begun to headbang and the picking behaviors have

increased.>>

>

> Hi, Everyone.....Gareth use to be a wicked headbanger, too. I

always said if

> they had to take X-rays of his skull, he's probably show numerous,

healed,

> hairline fractures. The Risperdal did stop the headbanging,

teethgrinding,

> extreme nastiness/beligerence, nonstop growling/rocking and total

> noncompliance. It also opened his speech pathway. Those benefits

far

> outweighed the weight gain issue in OUR case. But, like I said,

he's been

> on it for 4 yrs. now and I would love to try something that is

suppose to be

> safer. I don't take pleasure in knowing my child is on some

pretty heavy

> psych drugs. For now, we will keep the dosage as low as

possible.

> Take care, Everyone.

> Margaret

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Lara has been on Risperdal for about a year and a half. It seems to take away

the constant anxiety and fear. She 10 and going through puberty and has had an

increase in sudden violent outbursts which Depokote has helped. When ever we

try to cut down and eliminate the Risperdal things get much worse.

Side effect was weight gain but that evened out. One plus to that was she

suddenly ate every thing in sight including all kinds of foods she would never

have touched before so now she has a much more expanded diet! All medicines

don't work on all kids, but I hear of many that are on Risperdal.

Loren

Dad to Lara

---------------------------------------------------

Hi everyone,

I saw that the New England Journal of Medicine came out with a study

that shows some very positve results for children with autism that

took the drug risperidone also known as risperdal. Has anyone tried

their child on this and if so did you have any success or major side

effects?? My daughter Jayna is 7 and we have tried adderall which

made her verbal tics worse and clonidine and tenex. Clonidine worked

for a while but her doctor thinks we should try this route next. If

anyone would share their thoughts/ideas I would be grateful.

Thanks.....

Mom to Jayna

--

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Gee, thanks for the informed answer........not what i am looking for at this

stage, but handy to know about. cheryl S [nsw]

-- Risperdal

What is Risperdal?

Risperdal, or risperidone, is the newest medication for treating

schizophrenia and psychotic disorders. It helps manage schizophrenia's

" positive symptoms " such as visual and auditory hallucinations, delusions,

and thought disturbances. Risperdal may also help in treating so-called

" negative symptoms " such as social withdrawal, apathy, lack of motivation,

and inability to experience pleasure. Side effects are usually relatively

minor, and blood monitoring is not necessary. Risperdal is the first new

front-line treatment option in twenty years.

How is Risperdal different from other antipsychotic medications?

Conventional antipsychotics such as Haldol, Stelazine, and Prolixin have

treated positive symptoms in many patients for several years. However, they

do not satisfactorily affect the negative symptoms, and they often cause

uncomfortable or intolerable side effects. Risperdal is as effective as the

conventional medications in treating positive symptoms. It also offers the

advantages of helping to treat some of the negative symptoms somewhat and

causing fewer extrapyramidal side effects (EPS) such as restlessness, muscle

rigidity, and tremor when taken at the manufacturer's recommended dose of 6

mg per day.

Why is Risperdal called a new " front-line option? "

It means that Risperdal could be the first medication prescribed for a

person who is newly diagnosed with a psychotic disorder. Some medications,

such as clozapine, have side effects that may be inconvenient or difficult

to manage. Such medications may be reserved until after other medications

have been tried unsuccessfully. Because Risperdal is effective and has

relatively few side effects, doctors may consider it one of the first

medications to try for patients with schizophrenia. It's important to

remember that no medication will work for everyone, and some patients will

have greater success with Risperdal than others.

How does Risperdal work?

Risperdal, like other new antipsychotic drugs currently under development,

is designed as a serotonin/dopamine antagonist. While its exact mechanism of

action is not yet understood, Risperdal seems to block the action of

serotonin and dopamine, two neurotransmitter chemicals in the brain.

Conventional antipsychotics seem to primarily affect only dopamine.

How quickly does Risperdal relieve symptoms of schizophrenia?

The recommended dose is usually reached within three to four weeks, and

improvement of symptoms may be noticed in some patients relatively quickly.

Some adjustments may be necessary to reach the optimal dose for each

patient. It is normally advisable to give the medication a trial period of

at least four to six weeks at the optimal dose (6 mg/day) before evaluating

its effectiveness, although experience with clozapine suggests that

improvements may take months to fully emerge.

What are the side effects of Risperdal?

When taken at the manufacturer's recommended dose of 6 mg a day (3 mg twice

a day), the incidence of many side effects is not significantly greater than

for placebo. These side effects include extrapyramidal symptoms (muscle

stiffness, tremors, and body shakes). At higher doses, extrapyramidal side

effects often increase. Benztropine (Cogentin) can be prescribed to reduce

or eliminate stiffness and tremors, but its use beyond three months should

be re-evaluated.

More significant possible side effects, affecting some patients but not all,

include low blood pressure, dizziness, especially when standing up suddenly;

heart palpitations; sleepiness; constipation; weight gain; sexual

dysfunction; and fatigue. Some of these problems can be minimized by

following recommended guidelines for dosage at the beginning of treatment

(gradual increase of dose over a period of several weeks). Patients who

already have low blood pressure, who have kidney or liver impairment, are

elderly, or in a weakened condition may require close monitoring and even

more gradual dose adjustment.

Does Risperdal cause tardive dyskinesia?

Tardive dyskinesia (TD), a disfiguring side effect that occurs in some

patients taking antipsychotic drugs, may not be a major risk associated with

Risperdal use, although it may take years before researchers can fully

assess the risk. It is prudent to minimize the risk by using the lowest dose

necessary to relive psychotic symptoms. Should symptoms of TD develop, such

as grimacing, sucking and smacking of lips and other spasmodic movements,

discontinuation of Risperdal should be considered.

What else should be kept in mind when taking Risperdal?

Risperdal is usually taken twice a day. It can be take before, during, or

after meals. Because of its long half-life (similar to haloperidol),

however, once daily dosing should be considered. Patients should be cautious

about operating hazardous machinery, including driving, until they are

certain they are not adversely affected. Women should let their doctor know

if they become pregnant or intend to become pregnant. Breast feeding is not

recommended while taking Risperdal. Because some medications can affect the

effectiveness of Risperdal when taken at the same time, patients should be

sure their doctor is aware of all medications they are taking.

How much does Risperdal cost?

At the recommended dose of 4-6 mg a day, Risperdal is expected to cost the

patient less than $3,000 a year. Some insurance policies will cover the

cost. Uninsured outpatients who meet income eligibility standards may

qualify for low cost or free Risperdal through the manufacturer. Janssen

Pharmaceutica also answers questions about insurance coverage, and offers

assistance in filing claim forms and resolving claims that have been denied.

For information on the Risperdal Patient Assistance Program and the

Risperdal Reimbursement Support Program, call 1-800-652-6227.

Reviewed by Pickar, M.D., Chief, Experimental Therapeutics Branch,

National Institute of Health, (5/94) and Dale R. Grothe, Pharm.D., Mental

Health Clinical Pharmacy specialist, NIH/NIMH Pharmacy Dept. (12/95)

The NAMI HelpLine can be a lifeline for consumers and families in need.

If you found this information helpful, please help us help someone else.

For information on serious mental illnesses and brain disorders, or

for a referral to your State and local affiliates, please contact the NAMI

HelpLine:

1-800-950-NAMI (6264) / TDD 703-516-7227

Visit the HelpLine page

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LOL! Don't be too overwhelmed! I just cut and pasted!:)

Elaine

Gee, thanks for the informed answer........not what i am looking for at this

stage, but handy to know about.

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Since PB has never taken risperdal alone, I cannot say with certainty what

effects it has had on him that might not be a combo of his other meds.

(Focalin, which is a purer form of ritalin, and clonidine, are also part of

his mix.) He has been on risperdal for at least two years now.

He takes .5 mg at bedtime, and .25 each in the morning and at lunch with

the focalin. For him, it seems that the focalin works better in

conjunction with the risperdal, which together helps him focus.

When he was taking the risperdal initially (we started with .25 mg at

bedtime) he had a slight weight gain for the first few months. I

immediately went to diluting his juice and cut back on a few things for

him. The biggest change (and this was only initially) was that he was

gaining some weight because he was slowed down on the risperdal, not

because he was hungrier overall and eating more. (PB does have a dx of

ADHD from his pediatrician, on top of everything else, but it's always hard

to ferret out what is causing what behavior-wise. He has been always been

pretty active physically, even from birth.)

So, with the combination of meds that he is on, he:

-Sleeps soundly through the night (although he never did have sleep problems)

-is definitely slowed down and able to calm himself somewhat when asked to

-has much better impulse control, although he was some OCD behaviors that

still are in issue, just not at school (he will change shirts compulsively

when he finds a basket of unattended laundry)

-He is much more focused. We can always tell when this is improving

because he notices more things in his environment and usually explores more.

-we attribute his continued increase in spoken language in some part to the

risperdal. Both the SSRI drugs and risperdal can stimulate the language

center of the brain. His spoken language has continued to increase on a

steady basis.

-He can be very loud and disruptive at school. He is able to control this

better and is quieter for a few hours after taking his daytime meds.

Ben had some aggressions, especially at school. He used to try to

bite others on occasion, and tried to scratch people. These behaviors have

been gone for quite a while, but he still does what I would lable as

bullying type behaviors- pulls hair or glasses of the other kids in his

special ed class, and sometimes tries to hit adults. But these behaviors

have been much more amenable to correction and change, and don't appear so

quite out of the blue as before.

Again, it is so hard to know what to contribute to which meds, especially

since we are doing lots of behavioral interventions and a sensory diet and

he's hit puberty.

Just for what it's worth, when PB and I say night time prayers, I usually

include a prayer that his medications will only help, and never hurt, him.

It was one of the ways that *I* could manage my own anxiety about having

him take meds.

I don't regret that we have included meds as tools for helping him be more

comfortable in his own skin. But they are just some of the things in our

" toolbox " !

Hugs,

Beth

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>

> From: Beth <paul.3@...>

> Date: 2003/04/04 Fri AM 08:22:41 EST

>

> Subject: Re: risperdal

>

> >>Just for what it's worth, when PB and I say night time prayers, I usually

include a prayer that his medications will only help, and never hurt, him.

It was one of the ways that *I* could manage my own anxiety about having

him take meds.>>>

Ohhhhh, Beth you are sooooo caring. That would make me feel better too! I

forgot that risperdal can stimulate the talking.

Diane

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Hi Sue,

Welcome to the group. It is certainly a nice place to come to daily

(when time allows). I have a 4 year old (Jordan ) who gives his

father and I the dickens of the time - all the time. I tell my

co-workers he is 5 children in one.

My husband and I have submitted an application for Jordan to be seen by a

multidisciplinary group located in ville, Florida that specializes

in Down syndrome. Our major concern is Jordan's aggression... which

comes on a daily basis at home, school, and in public. We note that it

is mostly when we want him to change from one activity to another, or

when the environment around him is to stimulating.

Right now all we are doing is being trying to be calm with him and

transitioning him to the next activity via pictures. I plan to ask the

group in ville about this Risperdal that I am hearing alot about

in the DS-Autism listserve.

Keep us posted on Karrie and how she is responding to the Risperdal.

- thanks, and best of the day to you. debby (mom to Jordan, 4 years, 5

monts, DS-ASD)

PS - and hello and good morning to the rest of the DS-Autism

community!!!!!!!!!!!!!!! It is a beautiful sunny day here in

Tallahassee, Florida.

'The love of our neighbor in all its fullness simply means being able to

say to him, " What are you going through? " ' - Simone Weil

______________________________________________________________________

On Sat, 24 May 2003 04:59:28 -0000 " karriemom " <karriemom@...>

writes:

> Hi,

> I just joined the group tonight. I have a 7 year old daughter with

> Down syndrome. Her pediatrician just prescribed risperdal for her

> aggressive behavior.

> I looked through the archives and would love to hear about anyone's

> experiences with risperdal, especially with a child with ds, if

> possible.

> Thanks in advance!

> Sue mom to Kate 13 and Karrie 7 w/ds

>

>

>

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Thanks to all who replied to my question.

I've decided to hold off on the medication route. The school will have the

behavioral analysis done within a week. Her surgery for her teeth (recapping)

will be on June 16.

Of course, she's been a sweetheart the last few days!!

Sue mom to Kate 13 and Karrie 7 w/ds

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How much Clonodine are you using for sleep issues? This has worked very well

for us but we may be giving more? I give my 52 pound child one half of a .5

mg tablet when he has trouble sleeping and this works like a charm for at

least 6 hours or more. Talk to your doctor about increasing the dose of

course, but I only give 1/4 a tablet during the day for hyperactivity. I

tried all the other herbal supplements you mentioned as well with no

success. You might also look at whether you are giving him any amino acids

or b vitamins late in the day. It may sound crazy but these things make my

son very hyper. Dr.Rao in Plano was amazed by this but the proof is in the

monkey. Best of luck to you. Trina

Risperdal

Is anyone using this for sleep issues? We have been on Clonodine for years

but have only had moderate sucess. The Dr has prescribed riperdal.Melatonin

doesn't work, Calcium is administered at night, we have a nighttime routine,

he doesn't appear to have any problems, he just wakes. Ideas? Is this stuff

remotely safe?

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Hi...Could I get parents to tell me about Risperdol and their child pro vs cons? jen

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At 12:36 PM 7/27/2004 -0400, you wrote:

Hi...Could

I get parents to tell me about Risperdol and their child pro vs

cons? jen

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From: lorikamper [mailto: lkamper@...]

Autism and Aspergers Treatment

Date: Thu, 25 Nov 2004 15:33:02 -0000

Subject: risperdal

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My son has been off of risperdal for a week. His behavior is very <BR>

erratic. Does anyone know if there are any side effects to look out <BR>

for when one stops taking risperdal? How long does it take to get <BR>

out of their system after stopping it?

My son was on it, but i don't think that he had side effect ,but while he was on

it he ate alot now since he has been off it he has last alot of weight.

Bobbie

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