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Maureen,

had both his tonsils and adenoids removed and was still having the

apnea, so they looked at his Epiglotis and found the problem.

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he is nine too, he also has low immunoglobins so this makes it harder for

him to fight off infections/viruses.

>From: MRASMUS@...

>Reply-egroups

>egroups

>Subject: Re: Re: Meds

>Date: Mon, 28 Aug 2000 22:34:59 EDT

>

>In a message dated 8/28/00 4:20:15 PM Central Daylight Time,

>mashawnag@... writes:

>

><< Do our kids ever build up general immunities? im beginning to wonder.

> shawna >>

>

>I used to wonder this too when was younger. She is now nine and I

>would say that she has been much healthier - fewer colds, sinus infections,

>stomach viruses, etc. - for about the past two years. I forget, how old is

>?

>

>Maureen

>

>

>

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Hi Judy,

Lets see - what meds are the kids on? :o)

Tom takes 150mg anafranil in the am + 100mg Serzone for depression; and

100mg (recently reduced from 150mg) again at 9pm. His O's and C's are

controllable at this dose.

Adi was on Effexor for a year+ but remains med free since Oct. 99! She is

fond of taking NYQUILL to help sleep, though!

Ziv now takes 100mg zoloft each morning and 50mg Trazadone to sleep at

night. She still experiences anxiety, but is handling it very well, and we

may be lowering her dose to 50mg.

the other kid, Yigal, takes 100 - 150 mg zoloft for ocd, and is in the

process of stopping Wellbrutrin and starting Effexor for depression. he

still has some very funny O's and C's and the kids are very quick to pick

them up and point them out. Recently is was over a pair of Tom's orange

coveralls that he thought would bring tom bad luck!

I'm on 75mg Effexor, every second day. I have been on meds for years and am

in the process of trying without. I am lowering the dose over several

months.

How high has the Paxil been raised with your son? Maybe he needs a

different med? The common SSRI's had no effect on tom. He took Manerix for a

while and the depression was under control. A couple of missed doses and he

was suicidal though. Tom did take Respiradol with anafranil for a long time,

but it made him dopey, not more in control.

What would you like to try? any ideas? I usually go to the psychiatrist

with a suggestion and then we discuss it as part of our team approach. Tom

started therapy this past week - the next few months should be very

intersting!

take care, wendy, in canada

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

>, what meds are your kids on? Mine is on anafranil (100mlg) plus 20mg

>Paxil. It is not taking care of his depression, and his anxiety is often

>way too high.

>

>Judy

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Hi everyone,

Welcome to our new member(s)! I went away last weekend for a quite time

with hubby, and finally yesterday gave up on trying to read all the

messages I got. I deleted 170 yesterday without reading them. So, I may

not be up on any conversations.

My name is S, I have 5 children ages 16 to 10. My 10 year old is

Matt, DS_ASD.

I just wanted to put in another word on Meds. ( " Old " members will want to

ignore this)

Matt has been on Naltrexone since he was 4 years old, with very good

results. It is an opiod antagonist, used with some success in autistic

individuals. I know it really helps with his withdrawn, aggressive,

destructive and somewhat short attention span stuff. IF anyone wants any

other info, just let me know

Welcome again

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Hi ,

We are new to the group. I have heard about Naltrexone, but haven't

been able to use it yet. I think the last reason was that it could

interact with some of 's other meds. I would like to know

more about it for sure. has severe SIB/Aggressive behaviors

which are " somewhat " diminished by Tegretol and Zyprexa, but they are

definitely getting more troublesome as he gets older and bigger. I'm

not sure if the behavior is actually worse or if we just are more

aware of it because he is bigger. Any info you have would be

appreciated! Thanks!

Terry

Mom to (age 13)

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Hi Teela,

Trazadone is not one of the top 5 recommended choices for ocd - but it can

be a good medication for depression. The top OCD drugs (in no particular

order) are: Prozac, Paxil, Luvox, Zoloft and Anafranil.

The only information I remember is that Trazadone is often augmented with

other anti-depressants to help the patient relax at bedtime. My 11 yr has

been on 100mg zoloft for ocd and trazadone each night to help sleep for 1.5

years.

You might find some info here:

http://uhs.bsd.uchicago.edu/~bhsiung/tips/tips.html

Here is a link to a trazadone info page:

http://www.rxlist.com/scripts/patient/piumore.pl?mononum=879 & dc_category=Depress\

ion & order=0 & type= & item=

I hope this helps. Has the diagnosis of OCD been confirmed in Summer?

I suggest that you ask the doctor why s/he has chosen this particular

medication. There is an expert consensus guideline available if the doctor

would like to know which medicaitions are best suited for ocd. This is a

link for OCD medications for children:

http://www.ocfoundation.org/ocf1060a.htm which you might want to read.

let me know if I can help with anything.... wendy, in canada

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

>Hi its Teela. We had an appointment today and the dr

>wants summer to start taking Trazodone. Does any one

>have experience with this and side effects. Thanks

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HI Teela:

My sister has taken Trazodone for depression and sleep disturbance. It is

not considered one of the first line meds for OCD. Is the doc prescribing

it as a general antidepressant or does he feel it will work for OCD? A doc

might prescribe this if all other anti-obsessional drugs have not worked,

it might be used to augment an anti-obsessional, like Anafranil, to which

the sufferer has achieved a partial or slight response.

Most kids with mild or moderate OCD can be treated without meds. If they

need meds because OCD is too severe or comorbid disorders are present, then

they are usually tried on at least three SSRIs before trying Anafranil,

which has in general more side effects than the SSRIs. The SSRIs that are

used for OCD include Prozac, Paxil, Luvox, Celexa and Zoloft.

Check out the following URL on meds for children with OCD, it has a lot of

helpful information:

http://www.ocfoundation.org/ocf1060a.htm

It can take quite a while for meds to become effective for OCD as generally

dosages, even for children who metabolize drugs quite fast, are high and

need to be followed for 10-12 weeks at the high level to determine if the

medication will work for OCD. On the way there some of our kids encounter

behavioral side effects which can make it look like the medication is

making things worse. Actually this is a good sign that the medication may

work very well, so you have to hang in and wait it out. Most side effects

are less noticeable after the body has had time to adjust.

I take Effexor for GAD and there are clinical reports that this medication

is also effective for OCD. That is one of the reasons I chose Effexor,

because I thought if it works for me, there is a chance it will work for my

son, Steve.

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

kathyh@...

At 04:36 PM 10/26/2000 -0400, you wrote:

>Hi its Teela. We had an appointment today and the dr

>wants summer to start taking Trazodone. Does any one

>have experience with this and side effects. Thanks

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Teela,

Rest assured that your parenting skills, TV, or your work schedule, have

nothing to do with Summers diagnosis! We all feel guilty, and have " What if "

questions, but the reality is that ocd is not caused by environmental

exposure. Summer was born with ocd (based on your descriptions of her from

early childhood). In her case, you are lucky to be able to work with her as

a younger child - she will grow up knowing how to fight back the O's and

C's!

Here is a question for you: Could this be your own ocd talking? Are you

obsessing that you cant give Summer meds because something will happen to

her?? Can you stop and think for a sec what is really preventing you from

having her take a medication?

There are other children who began cbt at 4 years old. I would read as

much as you can and try to convince the doc to try it out. Where are you

going for the follow up treatment, Kingston?? Ask if there is a family

support group for you to join. YOu will learn a lot if you can be with other

parents in your situation.

I didnt want to give my kids meds either. We tried valarium, various teas,

schedules, tough love, punishments of restraint,... BUT once tried, how

could I ignore that the medication helped them so much!! It was such a

relief to see them relax, sleep better, give their minds some rest....

My kids started meds at 13, 10 and 7. The oldest, now 17, still needs meds

to control himself. My youngest, now 11 yr, has slowly been lowering her

dose of zoloft to 50mg from 200mg in June. The star is my 14yr. A year ago

she decided that she didnt want to take meds any more. Her ocd had been

severe at one point, and suicide was a attempted often when she was 10 and

11. Last Oct. she stopped all medication - and has not required more than

irregular reinforcement of erp!!!!

My point is, if Summer needs meds, then why not give them to her? When she

no longer, if she no longer, needs them, she can stop taking them!! You and

summer should learn how to treat ocd through cbt and ERP as soon as

possible, so that your attempts to reduce meds can begin sooner, rather than

later. it really does work!

take care, wendy, in canada

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

>The dr. has confirmed that Summer has ocd. He wants her to start with

>trazadone so she can sleep at night. Some nights she sleeps through and

>others she wakes three times. the nights she sleeps through are the nights

>I can' get her to sleep. I am having a hard time telling myself to give her

>medication. It is hard to imagine that a 4 yr old needs an antidepressant.

>I keep thinking maybe if I hadn't gone to work or maybe she watches too

>much tv or if I weren't a single

>mother, If I could just make up for what ever she is lacking. It seems odd

>for a child to take meds because she has trouble wearing clothing. Teela

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The dr. has confirmed that Summer has ocd. He wants

her to start with trazadone so she can sleep at night.

Some nights she sleeps through and others she wakes

three times. the nights she sleeps through are the

nights I can' get her to sleep. I am having a hard

time telling myself to give her medication. It is hard

to imagine that a 4 yr old needs an antidepressant. I

keep thinking maybe if I hadn't gone to work or maybe

she watches too much tv or if I weren't a single

mother, If I could just make up for what ever she is

lacking. It seems odd for a child to take meds because

she has trouble wearing clothing. Teela

_______________________________________________________

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HI Teela:

The reason SUmmer is not sleeping well at night is because the obsessions

are causing anxiety and fear and this is keeping her awake. The best step

is to get treatment to control the obsessions and the anti-obsessionals do

this and then she will be able to sleep better. Even better is doing CBT

with E & RP.

Learning how to sleep is something our kids can pick up much faster once

the OCD is more under control. SInce tradozone has not been shown to be a

first line medication for this I encourage you to take printed information

to the doctor and let him familiarize himself with the meds that are most

effective. Also ask for a referral to a CBT therapist familiar with OCD in

young children.

I take Effexor which is also effective against OCD and I can tell you since

my GAD got under control, I sleep like a baby. Ask my husband who has to

try to get me up in the mornings. I used to be last to bed and first up.

Please do not blame yourself for Summer's diagnosis. OCD is a no-fault

brain disorder and we are lucky that it is highly treatable. With the

right kind of care, Summer will be doing a whole lot better. This is not

something you caused, it is a brain-based problem and chemicals in her

brain are not functioning right. They are sending her error messages about

her clothing and this is causing her to behave in ways we recognize as OCD

symptoms.

Do you live anywhere near our excellent list docs? They or someone trained

and experienced like them could help SUmmer much more than Trazadone. Good

luck, take care, aloha, Kathy (H)

kathyh@...

At 06:35 PM 10/27/2000 -0400, you wrote:

>The dr. has confirmed that Summer has ocd. He wants

>her to start with trazadone so she can sleep at night.

>Some nights she sleeps through and others she wakes

>three times. the nights she sleeps through are the

>nights I can' get her to sleep. I am having a hard

>time telling myself to give her medication. It is hard

>to imagine that a 4 yr old needs an antidepressant. I

>keep thinking maybe if I hadn't gone to work or maybe

>she watches too much tv or if I weren't a single

>mother, If I could just make up for what ever she is

>lacking. It seems odd for a child to take meds because

>she has trouble wearing clothing. Teela

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Kathy, the dr. said summer is too you to do CBT and

that ERT is going to be hard with her age as well. I

will tell him about the other meds. this is our third

appointment with him and He is sending us to

children's mental health for additional help. He wants

to do a parasite treatment and then additional

bloodwork and then an allergy testing to. Perhaps this

is why he is waiting on further meds. he wants to

cover all the bases and he wants a video tape of her

behavior if possible. Hugs Teela

_______________________________________________________

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Hi Teela, I'm a different Kathy, but:

> Kathy, the dr. said summer is too you to do CBT and

> that ERT is going to be hard with her age as well.

E & RP is probably more difficult with a very young child, and perhaps even

more challenging is finding a therapist with this training and experience in

working with young children with OCD. I was unable to find one who would

work with my child, and so bought the March and Mulle CBT manual and began

this therapy with her myself. She was 5 at the time we began, and I relied

heavily on the input of those on this list who were very helpful and willing

to share their expertise in designing exposures for my daughter's

compulsions. She has had much success in minimizing her symptoms through

E & RP and I know there are other young ones represented on this list who have

also done well.

> He wants

> to do a parasite treatment and then additional

> bloodwork and then an allergy testing to. Perhaps this

> is why he is waiting on further meds. he wants to

> cover all the bases and he wants a video tape of her

> behavior if possible. Hugs Teela

Do you know what this testing and the video tape are for? I haven't heard

of this being done before.

Kathy R. in Indiana

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HI Teela:

There are other parents on this list who also were told their kids were too

young. I am sure our list docs will respond, but four is not too young if

you find a knowledgeable CBT therapist who knows how to customize treatment

to young children.

We also have moms of young children who have served as co-therapist which

works quite well with young kids. Roman and Kathy are two

that I know have done this. There are likely more that are more observers

on the list.

If Summer has other non-OCD symptoms, then these extra tests make sense.

Does the doc think that her symptoms could be caused by something else? It

is hard when kids are young and cannot clearly express what is bothering

them. We found it hard to get a good understanding from Steve who was 10

when he was diagnosed. Even though he is usually very good at expressing

himself, he was not very good at explaining his OCD, and not all of this

was because of his embarrassment.

Video tape is a good way of communicating with docs. I would video tape

home E & Rp for Steve's psychologist so he could get the idea of what it was

like to take him to the contaminated beach (lots of footage of me coaxing

him to the water's edge) and get him digging in the dirt and planting

flowers in his planter. YOu can make it more of a game and make jokes as

you go along.

I have read of kids as young as 1-1/2 years old getting behavior therapy

for OCD. One doc told me you could work with a child as young as six

months old. Is there an OCD clinic in your state? YOu might want to

consider going there for a consult. Good luck, aloha, Kathy (H)

kathyh@...

At 09:06 PM 10/27/2000 -0400, you wrote:

>Kathy, the dr. said summer is too you to do CBT and

>that ERT is going to be hard with her age as well. I

>will tell him about the other meds. this is our third

>appointment with him and He is sending us to

>children's mental health for additional help. He wants

>to do a parasite treatment and then additional

>bloodwork and then an allergy testing to. Perhaps this

>is why he is waiting on further meds. he wants to

>cover all the bases and he wants a video tape of her

>behavior if possible. Hugs Teela

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> Hi its Teela. We had an appointment today and the dr

> wants summer to start taking Trazodone. Does any one

> have experience with this and side effects. Thanks.

Teela,

My only knowledge of Trazodone is from a friend whose husband takes

it. He has had severe depression and anxiety issues for

years...including trouble sleeping. He takes the Trazodone for

sleep. He is off all other meds, but has continued to take this so

that he can sleep at night. Sometimes he wakes in the middle of the

night and takes another dose.

Gwen in Oregon

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Hi Teela,

I have been reading all your posts--hang in there, you have a lot to deal

with right now, but you are doing all the right things---learning as much as

you can, finding support from parents who have been through this before, and

seeking treatment. You are at the point of making many difficult

decisions--to medicate or not, which one, CBT or not---the right answers to

all of these will be obvious only after you make your decisions

(unfortunately). For now, you have to be as informed as possible, weighs

the pros and cons, then, you have to take some risk, with a good measure of

faith and trust----there are no guarantees, no certainties here.

About CBT for 4 year olds---I have treated several 4 and 5 year olds

successfully with CBT. I understand why many professionals believe it

cannot be done---it does take a particular skill to know how to adapt CBT

for such young uns in a way that they comprehend. Unfortunately, there are

not too many therapists who are willing to give it a try, given that there

are so few CBT therapists to begin with!

A big piece of CBT with 4 year olds is working with parents, and how they

respond to their child's OCD. For instance, if a child is too young to

initiate E/RP, the parent learns how to to " wean " reassurance,

participation, assistance and avoidance, so that the child is exposed to the

fears in that manner. Before you know, the child just goes along with the

fact that " nothing bad happened " when they had to face the fear without

doing the ritual.

As Kathy said, when she couldn't find anyone to help her 5 year

old, she decided to learn how to do it herself! You don't give up, you

never give up on your child. Although it is highly preferable to find an

experienced therapist, (because it is a lot to learn all at once, especially

when you are pregnant, a single mom, working etc, and a therapist can get

you there a lot faster, with less trial and error) you may want to think of

the same. If you do, make sure you get ideas, support, check ins with other

experienced parents along the way.

Take care,

Aureen P. Wagner, Ph.D.

----- Original Message -----

From: Teela Blue <teelablue@...>

> Kathy, the dr. said summer is too you to do CBT and

> that ERT is going to be hard with her age as well. I

> will tell him about the other meds. this is our third

> appointment with him and He is sending us to

> children's mental health for additional help. He wants

> to do a parasite treatment and then additional

> bloodwork and then an allergy testing to. Perhaps this

> is why he is waiting on further meds. he wants to

> cover all the bases and he wants a video tape of her

> behavior if possible. Hugs Teela

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Teela,

PS: I forgot to add: Your first choice for CBT for your child should be a

therapist with expertise in CBT for OCD in children. Since that's a tall

order in most places, your second choice should be a good child therapist

(of any orientation) who is willing to learn the March protocol. I

suggest that taking on the role of therapist for your child should be a last

resort, when you have no other recourse. Again, it's because you have a lot

to deal with as a parent, and taking on this role is both very complicated

and burdensome. Right now, being pregnant, you need a lot more rest, and a

lot less stress--I was there not so long ago (my son is 10 mos old).

Take care,

Aureen Wagner

Re: meds

> Hi Teela,

> I have been reading all your posts--hang in there, you have a lot to deal

> with right now, but you are doing all the right things---learning as much

as

> you can, finding support from parents who have been through this before,

and

> seeking treatment. You are at the point of making many difficult

> decisions--to medicate or not, which one, CBT or not---the right answers

to

> all of these will be obvious only after you make your decisions

> (unfortunately). For now, you have to be as informed as possible, weighs

> the pros and cons, then, you have to take some risk, with a good measure

of

> faith and trust----there are no guarantees, no certainties here.

> About CBT for 4 year olds---I have treated several 4 and 5 year olds

> successfully with CBT. I understand why many professionals believe it

> cannot be done---it does take a particular skill to know how to adapt CBT

> for such young uns in a way that they comprehend. Unfortunately, there

are

> not too many therapists who are willing to give it a try, given that there

> are so few CBT therapists to begin with!

> A big piece of CBT with 4 year olds is working with parents, and how they

> respond to their child's OCD. For instance, if a child is too young to

> initiate E/RP, the parent learns how to to " wean " reassurance,

> participation, assistance and avoidance, so that the child is exposed to

the

> fears in that manner. Before you know, the child just goes along with the

> fact that " nothing bad happened " when they had to face the fear without

> doing the ritual.

> As Kathy said, when she couldn't find anyone to help her 5 year

> old, she decided to learn how to do it herself! You don't give up, you

> never give up on your child. Although it is highly preferable to find an

> experienced therapist, (because it is a lot to learn all at once,

especially

> when you are pregnant, a single mom, working etc, and a therapist can get

> you there a lot faster, with less trial and error) you may want to think

of

> the same. If you do, make sure you get ideas, support, check ins with

other

> experienced parents along the way.

> Take care,

> Aureen P. Wagner, Ph.D.

>

>

> ----- Original Message -----

> From: Teela Blue <teelablue@...>

>

> > Kathy, the dr. said summer is too you to do CBT and

> > that ERT is going to be hard with her age as well. I

> > will tell him about the other meds. this is our third

> > appointment with him and He is sending us to

> > children's mental health for additional help. He wants

> > to do a parasite treatment and then additional

> > bloodwork and then an allergy testing to. Perhaps this

> > is why he is waiting on further meds. he wants to

> > cover all the bases and he wants a video tape of her

> > behavior if possible. Hugs Teela

>

>

>

>

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

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

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy ,

Roman, and Jackie Stout. Subscription issues, problems, or

suggestions may be addressed to Louis Harkins, list owner, at

harkins@... .

>

>

>

>

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Well Summer spent her first nite with Trazadone. I

didn't sleep a wink. I kept checking on her. I was

terrified she was going to get sick or stop breathing

or something but I am pleased to say we both survived

and she had a much more restful sleep than she usually

gets. At about 10:00 she did have a nightmare and was

pretty cranky and a little groggy but settled very

quickly with soem cuddles in the rocker with mom.

the dr. want to do a parasite treatment as her blood

levels showed an elevated level of something. I can't

remember and it is elevated by parasites and

allergies. She did test positive for one parasite so

after treating that he will recheck the blood levels

to see if allergy testing is necessary.

He wants a video of her behaviors ar home of the

rages that she has. She is very reserved in the office

setting and with strangers. I find this completely the

same as everyone when they don't know someone so I

guess I can't really say why. Hmmm. Hugs Teela

_______________________________________________________

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cindy,

hi my daughter ashton was on clonidine for three years. it made her somewhat

calmer, but made her sleep... it was better than dexedrine and ritalin, butthe

seroquel far outweighs any drug we have ever been on....

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clonidine only made nathan more aggressive, and weve never tried seraquel, he

just recently got off of clomipromine, it wasnt helping in the least bit,

nathans been a completel nitemare over last couple monthes, so now we are

jsut staying with the ritalin TID, its the only thing that seems to calm him

enough so that the behavioral mangement acctually is duable. shawna.

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a,

nathan is ds-asd or ds-pdd, he does carry one of those right??? and ritalin

helps him.....WOW.....that is a total surprise to me, most parents i know say

that ritalin was a nightmare to them.....was to mellllll

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well he use to be ds/ autism but last year they changed it to pdd, the

ritialin doesnt stop the behaviors but calms him enough anyways, and Ive

noticed lately theyve been using ADHD on his diagnosis for it, after how many

times have they told me they dont like to diag. MR children with ADHD,

rrrrrrr, havent looked to see if theyve added it to his thesis,lol, of

diagnosis, i think thats all they like to do at the university hospital, more

than help sometimes. shawna.

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i see......that explains it....all i know is ritalin and dexedrine put ashton

on another planet....lololol was a nightmare from hell for me when she tried

both meds....i will stick to seroquel......lolol she is doing great,. better

than ever......take care and i hope nathan is on his good streak

too.......leah

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In a message dated 2/28/01 6:04:35 PM Pacific Standard Time,

writes:

> huh, anafranil made nathan's SIB's worse too, way worse!! and they kept

> upping and upping the dose becoming a real nightmare until they took him

>

a, too, became worse and worse on Seroquel, the miracle drug for

Leah's daughter, Ashton.....the more we gave him the worse he got, and we did

this for a whole month!

But you're right....not everything works the same on every kid.

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,

is on two meds for behavior - Zyprexa and Risperdal. I can also give

him Mellaril if he's out of control. He used to take Clonidine (in the form

of a Catapres patch) to help control self-stim behaviors. He was (and still

is) on Tegretol and Depekene for seizure control at the same time he was

taking the Clonidine. Both Tegretol and Depekene are supposed to have

positive behavioral side-effects.

Terry

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cindy,

ashton took clonidine for two years by itself then the third year we added

mellaril to help her sleep at night...i got old and couldnt handle those all

nighters anymore so finally gave in.....

>From: " Lee " <texasbluebonnets@...>

>Reply-

> " DS-Autism " < >

>Subject: Meds

>Date: Thu, 22 Mar 2001 17:11:10 -0600

>

>I just heard froma clinical Psychologist that when a child is placed on

>meds such as clonidine for behaviors that rarely is it just that med alone,

>that usually Ritalin or something like that is prescribed as well. can

>someone tell me if this is the case witht hem and how it affects thier

>child? is this common to have 2 meds at once?

>

>

>

>

>Paraprofessional in Special Education

>texasbluebonnets@...

>ICQ# :15118678

>~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

>*If I had the time to be organized, I probably would be!*

>

>

>

>

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