Re: meds vs no meds

[Guest guest]

Dana: I know when we tried to wean Tori off her Prozac, we had to stop at 1 ml.

She was just a mess any lower than that. She is on that, plus Risperdal, plus

Ritalin at this time.

Liz

meds vs no meds

I realize this has been discussed in the past. It's now an issue and I

have some questions for the group.

's pediatrition wanted me to slowly try taking him off Risperdal

as he is concerned with the long term side effects.( Obesity,

diabetes, and the yearly blood work to check cardiac and liver

enzymes.)

I've started decreasing the dose and at this point haven't seen any

remarkable changes.

I'm curious what some of your thoughts are re: this issue.

Do any of you out there have other things you've tried other than

prescription meds?

I realize this question includes the " sanity " issue, hence the

risperdal in the first place!

Dana

Hal, Dana, Frazer 15, 13 10, DS-Autism

[Guest guest]

Liz,

Would you mind describing to me what some of Tori’s behaviors were like

prior to the meds and how each has helped?

I certainly want a quality of life for , and want to find that balance

for him. Thanks for sharing.

Dana

_____

From: [mailto: ] On Behalf

Of Liz D

Sent: Monday, November 13, 2006 1:23 PM

To:

Subject: Re: meds vs no meds

Dana: I know when we tried to wean Tori off her Prozac, we had to stop at 1

ml. She was just a mess any lower than that. She is on that, plus Risperdal,

plus Ritalin at this time.

Liz

meds vs no meds

I realize this has been discussed in the past. It's now an issue and I

have some questions for the group.

's pediatrition wanted me to slowly try taking him off Risperdal

as he is concerned with the long term side effects.( Obesity,

diabetes, and the yearly blood work to check cardiac and liver

enzymes.)

I've started decreasing the dose and at this point haven't seen any

remarkable changes.

I'm curious what some of your thoughts are re: this issue.

Do any of you out there have other things you've tried other than

prescription meds?

I realize this question includes the " sanity " issue, hence the

risperdal in the first place!

Dana

Hal, Dana, Frazer 15, 13 10, DS-Autism

[Guest guest]

Dana: I was dead set against Meds but when Tori's behaviors started to

interfere with living, I gave in. She stopped sleeping, she developed a lot of

sensory issues. She is a major head-banger and has been since infancy. She

also flaps her hand/arms and stiffens out her legs. She acts aggressively at

times for no reason, alot of OCD things happening all the time, alot of

Echolalia (repeating the same word/phrase over & over), very high pain

tolerance, no safety awareness. We started with Prozac to help with moods.

Then we went to Risperdal to try and control some of the " inappropriate "

behaviors. And we just started on Ritalin recently to try to calm down the

aggressiveness. We started on the smallest dosages possible and brought them up

slowly until we saw an improvement.

Hope this helps with your decision. Once again, I am against meds big time-but

it got to a point where we really needed this type of intervention.

Liz

meds vs no meds

I realize this has been discussed in the past. It's now an issue and I

have some questions for the group.

's pediatrition wanted me to slowly try taking him off Risperdal

as he is concerned with the long term side effects.( Obesity,

diabetes, and the yearly blood work to check cardiac and liver

enzymes.)

I've started decreasing the dose and at this point haven't seen any

remarkable changes.

I'm curious what some of your thoughts are re: this issue.

Do any of you out there have other things you've tried other than

prescription meds?

I realize this question includes the " sanity " issue, hence the

risperdal in the first place!

Dana

Hal, Dana, Frazer 15, 13 10, DS-Autism

[Guest guest]

Hello Dana:

I thought I would reply to this thread just to add another perspective

on this issue of meds, to help you make the decision that's right for

your child.

My son Landon is 15. He has many of the same issues as Liz described,

though not as severe. He sleeps well, but is a " human alarm clock " .

His body will wake him at the same time everyday reguardless of how

much sleep he gets. He has many OCD tendencies, pinching(never pinches

others tho, just his own arm), throwing things, pacing(we have a path

worn on our carpet from this). He also doesn't know his own strength

but is getting better with that. He self-stims obsessively, and slaps

his own ears. No saftey awareness, and an escape artist. his moods are

usually very calm(shockingly)and happy. I chose not to medicate him,

though the doctors were all for it. He does take Risperdal, however,

he only takes it on a very limited basis before Doctor's visits and

invasive medical procedures(heart clinics, echos, EEGs). We use it to

keep him from laying out the doctors and myself.

I, personally, am dead set against stimulant or sedative meds of any

kind unless it's needed for medical care to be administered. However,

in my opinion, Landon's situation is not as dire and sself destructive

as many others are. And had the risk to himself or others been more

dangerous, I probably would have chosen to medicate him.

My prayers are with you and your family during this key time.

>

> Dana: I was dead set against Meds but when Tori's behaviors started

to interfere with living, I gave in. She stopped sleeping, she

developed a lot of sensory issues. She is a major head-banger and has

been since infancy. She also flaps her hand/arms and stiffens out her

legs. She acts aggressively at times for no reason, alot of OCD

things happening all the time, alot of Echolalia (repeating the same

word/phrase over & over), very high pain tolerance, no safety

awareness. We started with Prozac to help with moods. Then we went

to Risperdal to try and control some of the " inappropriate " behaviors.

And we just started on Ritalin recently to try to calm down the

aggressiveness. We started on the smallest dosages possible and

brought them up slowly until we saw an improvement.

>

> Hope this helps with your decision. Once again, I am against meds

big time-but it got to a point where we really needed this type of

intervention.

>

> Liz

> meds vs no meds

>

> I realize this has been discussed in the past. It's now an issue

and I

> have some questions for the group.

> 's pediatrition wanted me to slowly try taking him off

Risperdal

> as he is concerned with the long term side effects.( Obesity,

> diabetes, and the yearly blood work to check cardiac and liver

> enzymes.)

> I've started decreasing the dose and at this point haven't seen any

> remarkable changes.

> I'm curious what some of your thoughts are re: this issue.

> Do any of you out there have other things you've tried other than

> prescription meds?

> I realize this question includes the " sanity " issue, hence the

> risperdal in the first place!

>

> Dana

>

> Hal, Dana, Frazer 15, 13 10, DS-Autism

>

>

[Guest guest]

Hello Dana and All,

Pete ( Ben) has also been on risperdal since he was around 11, I

think. He is now 16. He is also on clonidine and metadate, an

extended-release form of ritalin. Like many others, Pete's behaviors

(aggression towards others, screaming, impusliveness that compelled

him to be agressive or disruptive and sometimes destructive) plus the

running off at every opportunity all put him at great risk for removal

from school (let alone learning anything while he was there). Adults

and children were fearful of him; our dreams of having him included

were never possible. And he was also getting bigger and stronger,

including pushing over his fragile grandmother when she lived with us.

Pete gained maybe 8 pounds in the first few months on the risperdal.

He gets blood work done twice a year. Our doctor has been fastidious

about keeping up with the research and long term possible problems. We

have been fortunate that our pediatrician happens to see a large

number of kids with disabilities (this has been for over 35 years) so

we have never had to convince him of the need to stay up on the Down

syndrome or the autism health issues.

Combined with the metadate particularly, Pete is simply more available

for learning. He is much more social, and I think he is one of those

kids for whom risperdal has helped improve language. (It is possible

that it stimulates the language center of the brain.) Since Pete

didn't begin to say much until after age 11, we suspect it may have

helped.

Over the years, he has been better able to co-operate with the blood

draws as well as doctor visits and dental work. He accepts getting

his head buzzed (he has alopecia) and he does pretty well with

brushing his teeth every day.

The impulsiveness has toned down (we have had our share of hair

raising scary stories so like many others here). Pete eats a

well-balanced diet and we push him to keep moving, exercise wise. (He

swims and runs/walks on the track) so we are trying to keep his weight

in balance.

But, like others have said, meds are not magic bullets. We still have

behavior management strategies, major stress on communcation, and

healthy habits all a part of the plan. School is not the constant

battle it had been.

Every once in a while I think about decreasing something he is on.

The " if it's not broke don't fix it " comes to mind. We have only seen

steady progress for Pete in the last three years since he has been on

the same drugs with no experimenting. Not that it's not 2 steps

forward, one step back.

I think what Margaret mentioned about Gareth is probably true for

Pete- he has been a happier, more tuned-in kid.

All that being said, I can totally understand your wanting to avoid

meds if you possibley can. But if you are already pedalling as fast as

you can and your child is still falling apart, it is enormous relief

to know that your child can get some relief with the right match of

meds.

One of the things that I did early on this meds journey (and still do)

is when Pete and I are saying his night prayers, I ask that his meds

only help, and never hurt him. I figured, it's worth a shot!

Take good care,

Beth Pete's mum Central Ohio (Columbus area)

[Guest guest]

Dana,

For us, it was the only route to go. His particular form of autism

gives him some behaviors, while not giving him others. He doesn't

scream or attack us. In fact, even when we are at the Doc's office and

are holding him down for shots or other invasive things(he can't stand

being poked and prodded), he doesn't scream, he does cuss us out very

well though. So really, I knew that I didn't really need to medicate

him on a regular basis. I have done many other life-changing things

though. My house is like Fort Knox because he escapes. I have alarms

on everything. I don't leave my house alot and we don't go places

because he doesn't like the public as a whole, and doesn't go out

well. We just avoided situations that would upset him, in general. My

family is used to that. He does small gatherings just fine, but I

couldn't get him into a church, movie theater, or a Wal Mart now if my

life depended on it. He likes family only, and loves people in

general, just not large groups of them.

The Risperdal for him, works like a muscle relaxer. He wants to fight

us still, but doesn't have the motivation. It works, but not to the

extent of him being as sedated as giving him a total sedative would

be. He's still combative, don't get me wrong, but he's not as hard for

me to hold him still. He out weighs me and is taller than I am now.

Our last Dr. visit before the Risperdal, it took 2 men from

maintenence, the Doc, myself and two nurses to hold him down for a Hep

shot and blood work. He'd had a seizure a couple days before so it was

necessary. With the Risperdal, he still fights me, but not as bad.

I should say though, for us, the Risperdal is not an option for things

as invasive as dental work. I doubt that would work at all for him,

all his dental work is done under total sedation. They do it when they

check his ear tubes.

I give him only 1ML of Risperdal 2 hrs before Dr. visits. It's the

only med he's ever taken besides Klonopin when he was an infant.

>

> Thanks Margaret, Laci and Liz for your responses. Greatly appreciated.

>

> Laci, your comments about medicating prior to a procedure were very

> interesting. I have never considered this before. 's

Pediatrition has

> never offered it as an option either. It's something I'm definitely

going to

> look into as 's last dental appointment was probably his worst!

>

> God bless,

>

> Dana

>

>

>

>

[Guest guest]

Dana, My husband was totally against meds in the beginning but after

seeing what a difference the meds make my husband thinks this is the

best move " he " made.No one ever wants to think about side affects

but even holistic meds and vitamins can have side affects.Watch the

commericials like helps headache but make cause abdominal cramps,

vomiting etc.Has the Dr. offered any alternatives? Cyndi

>

> I realize this has been discussed in the past. It's now an issue

and I

> have some questions for the group.

> 's pediatrition wanted me to slowly try taking him off

Risperdal

> as he is concerned with the long term side effects.( Obesity,

> diabetes, and the yearly blood work to check cardiac and liver

> enzymes.)

> I've started decreasing the dose and at this point haven't seen

any

> remarkable changes.

> I'm curious what some of your thoughts are re: this issue.

> Do any of you out there have other things you've tried other than

> prescription meds?

> I realize this question includes the " sanity " issue, hence the

> risperdal in the first place!

>

> Dana

>

> Hal, Dana, Frazer 15, 13 10, DS-Autism

>