HELP!!!!

[Guest guest]

I too had reached that desperate stage just about a month ago. My daughter Lara

(just Age 10 autisitic)already seeing a Neurologist,Phyciatrist,Pediatrician and

on medications - risperdal, remeron, Zanex would suddenly flash violently for

apparently no reason known to the rest of us. (I've been trained extensively in

parent groups in ABA and I am very aware of triggers) It would take as many as

3-4 trained people to restrain her as she would attempt to hit kick bite rip or

remove her clothing and SCREAM! This could occur at any time and at any place.

She flipped waiting for an emergency meeting with the Neurologist and were told

to go directly to the emergency room of a hospital. He gave her a good dose of

Zanex which sedated her for a while. Went to the emergency room of a phyciatric

hospital recommended by both the doctor and my insurance only to be turned away

because they said they had no facilities to handle her. Now with a ticking time

bomb on my hands I drove to the closest hospital to my home. In the waiting

room the sedation wore off and she flipped again. Quite an experience to stop

an entire emergency room of a major hospital in its tracks. They came running

out and took her in right away and tied her to a bed for 3.5 hours. She was

allowed to be admitted after the insurance company could not find a facility

that could handle her within 30 miles! (and I live on Long Island NY!)She stayed

for a week while they doubled her Risperdal dose and switched her to Depokote.

She is much better now but the outbursts still happen occaisionally out of no

where and violent. I actually cringe now when she approaches me suddenly

because I don't know if she is going to hug me or strike me. (I call it the

Jeckle and Hyde syndrome!)

Things are better but I'm far from being out of the woods yet! To me this all

started when her body started to mature although she has not had her first

period yet. The doctors only say - yeah maybe you're right but don't offer

anything specific in regard to the feminine issue. (any input from the group

appreciated)

bottom line: search and search for the right set of doctors - Ive been through

quite a few as they give up one by one when they run out of medication " tricks "

from their sometimes limited knowledge and experience and above all don't be

afraid to admit when things are out of control and run to an emergency room if

necessary. Medication is still a mystery for these kids - no magic bullet yet -

what works wonders on one kid does absolutely nothing for another or even makes

them worse! Searching for the right Meds can take a lot of frustrating time but

if you find the right one - life can be very different

Loren (single dad)

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

OK... We have reached a time when I must do something drastic.

Things have been increasingly getting worse behavior wise and then

tonight after telling our 8 year old it was time to go to the store

and leave the playground she spit at her father... which is something

completely unacceptable to me, regardless of her diagnosis. Her

punishment for this was no ice cream.. fairly mild, IMO, from here

she began praying for God to take her to the land of spoiled brats

where she might be allowed to eat all the ice cream and candy she

ever wanted and could pick her scabs and be mean to her sister...

then it escalated to her telling me how she was going to get a boy in

our neighborhood whom she calls her boyfriend to kill her father and

I. I am not too concerned she could actually accomplish this feat at

this age BUT, I also know it won't be long before she can... SO... I

am thinking I need to call the doc asap and get some new meds or do

something before this gets any worse... she also threatened to punch

me in the stomach, which wouldn't normally bother me but I am

pregnant at the moment. I tell you, I am fearful she CAN at this

point, hurt her 3 year old sister... sorry to be going on and on and

venting about my own child but I honestly don't know that a new med

can help us and wonder where else am I to go from here. We have been

seeing a neurologist for meds, but is there a better option?

Thanks for listening!

Lyn

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[Guest guest]

Dear Loren,

Sorry to hear about the violent episodes. I have a couple of suggestions,

one is Dr. in Manhattan, who has been very helpful for our

family when we had bouts of aggressive behaviors ( though none quite like the

one you described). He's a pediatic psychiatrist with an extensive

background in autism. He'll work with you to adjust and alter meds. ( it

took us years to find the right cocktail but he was extremely sympathetic and

well versed and he'll admit if he doesn't know something but will work with

you).

The other thing is that after reading on another list, there was a parent of

a girl who used Neurontin instead of Depakote. So, we tried using Neurontin

as a base for our daughter and it helped enormously. I told the list which

is more boys than girls about Neurontin and several families tried it but it

didn't work for them....so I wondered if it's more helpful in the chemistry

of girls than boys.

It's a thought and it's possible that you're working with a prescribing

doctor that you really trust and are comfortable with but in case you weren't

and in case you're thinking of another medication, Neurontin is a mood

stabilizer.

My thoughts are with you and hope that you find some help.

Warm regards

[Guest guest]

this sounds like some of the things we went through with son.

he is aspergers, and 12 yrs old right now.

in the past the ped. docs had suggested various medications-ritalin, respiredal,

and something else.

instead brought him to the naturopath.

this is what it was like prior to getting help for him:

* his anger tantrums were intense.

-he sometimes took the whole dinner table, (with it being set for dinner, all

food on it) and flipped it upside down.

- he sometimes kicked his door, walls, mineself, furniture, the dog.

-he banged his head against the door so hard during a tantrum that he broke the

door frame.

-he has banged his head against mine body so hard for bruises to come.

-thrown things, tore things apart, books, pictures, cushions.

-chewed things apart, his blankets, his shirts, his fingers to bleed.

-stomped his feet.

-swears, and says mean things " your stupid " to his sister, etc.

-slams doors, chairs, fists.

* his emotional turmoil, " ups and downs' have been so intense that he has:

-threated to kill himself.

-run away.

-jumped out of the car in traffic during a moment of not getting his way.

-run away from school.

-crying spells, which end up in " i just want to die " .

-threatening to kill people in school.

-threatened to 'blow up the place'.

these are just emotinal, behavioural things that have had negative outcomes, not

things such as stimming, etc. which is a totally different story.

ok, so we discovered that:

1) milk, and all milk containing products (even things like frozen chicken

burgers that say they have " milk solids " in the ingredients HAD to be ELIMINATED

and his agression subsided. Now he takes peptizyde and HN-Zyme Prime (from

www.houstonni.com) when he occasionally has an infraction with milk products

(mostly ice cream when we go to town) and he has no reactions or regressions

while on the enzymes.

2) his B6 had to be reduced, it was also contributing to his hyper, agression.

(thanks to roxanne on enzymes list for locating this link)

http://www.geocities.com/upadhye10/index.html

it speaks of why some may hve aggression, irritability seizures tied to " excess "

supplementation. They recommend to give Vitamin B6 (2/mg) only ONCE A WEEK!

3) he has problems wihth phenols, and these contributed to his aggression, and

hyper. for info on phenols see: http://www.autismchannel.net/dana/phenol.htm

now he takes No-Fenol from www.houstonni.com when he eats phenolic foods. and

he has no reactions (hyper or agfgression) , or regressions.

finally about Risperdal, it helps those self-injurious behaviours, OCD,

aggression and hyperactivity The Ari parent survey gives it a 56% rate of

positive improvements and 30% with no change at all.

minna

" The Doctor of the future will give No Medicine, but will interest his

patients in the care of the human frame, in diet, and in the cause and

prevention of disease. " .-Attributed to Alva Edisonn

" Our lives begin to end the day we become silent about things that matter "

Dr. Luther King, Jr

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[Guest guest]

Hi Ben

Is he non-verbal or does he have any language?

[Guest guest]

and Ben, so you are in the 'bad parenting' club too! For our boys,

we just had to get a hard shell and ignore them when they do the yelling and

screaming to get what they want. Yes, it is hard when you are out in public

and everyone is staring at you and the kid and they are wondering why in the

world that you are letting that child behave in such a manner. It is easier

for us to handle if there are two adults and one can just take the child out

of the store. I have made the mistake of taking all three boys, by myself,

to Costco. Evan was not the problem at the time. Yes, he wanted to 'run' but

it was the oldest bawling because I would not buy him yet another game. I

ignored him--well, I did laugh at him which made him madder--and did not buy

the game. I also ignored all the people in line that might be wondering

about his behavior. The next day one of the clerks asked me if I had left

all the boys at home, which I had, so I knew that he remembered the incident

and the boys.

I think a lot of it depends on the why for the screaming and yelling in

public. I had to re-teach and that 'no' means just that and

they do not get something everytime they go to the store. It can still be a

battle sometimes when they want a new game. thinks nothing of asking

for a $50 game at the store and then pouting or throwing a fit when I tell

him no. Evan's screaming is usually because of his lack of ability to

communicate all his needs. On one trip to HomeTown Buffet this month, he

started screaming as soon as we got to a table. The people at the next table

seemed very glad that their meal was over and split as soon as possible. I

grabbed him a glass of chocolate milk before I did anything else and then

went to get him some food fast! He was hungry and way past waiting to be

fed. The next trip, he kept trying to get up and was not allowed to so it

was our fault that he messed his pants. phew and too bad I did not put any

pull-ups on him for the trip.

My personal advice is to ignore the screams and take the child from the

store immediately. went into a rage at Pizza Hut right after I had

placed a take out order. I got him into the car and took him home, then

returned for the pizzas. I also took about 3 months before I returned to

that store and I NEVER take with me again. I probably will one of this

days but he still rages over the smallest thing so it is an iffy thing.

Of course, we have bipolar and autistic behaviors to deal with but I have

noticed that a lot of the behavior training ideas go for either disorder.

You might consider having some cards made up that explain that your child

has autism and some of the behaviors that go with it. I know some parents do

this for their children with autism and also with bipolar. What you are

going to have to do is learn to be hard shelled about these other people and

do what it takes to change your child's behavior. Most of them you will

never see again but you have to live with the child and you want that to be

a good experience for you and your child. And believe me when I say, I know

that is not always easy. I am raising the second generation for me and my

mom has dwelt with three generations of Bipolar/ADHD. At 80 yo, she has

almost retired or at least hopes she has.

Oh, I almost forgot. Sometimes you have to try medications. It was

suggested that we try Risperdal with Evan and I did not like it so after a

bit, I thought it was not doing any good and took him off it. WoW, what a

mistake! We soon saw just how much it had been helping him with his rages.

His behaviorist and I had to drag him out of K-Mart while he laid down and

raged because we would not let him go and check out the warehouse area. He

is now on Abilify which is working for him. I am going to use my signature

with our meds so that you can see what ones my crew is on.

BETTY ANN-62 yo, possibly undx'd Bipolar

Effexor

grandma and guardian to

ANDREW - 12 yo-- Bipolar/ADHD, Homeschooled

Adderall XR 30 mg. Abilify 20 mg, Zoloft 50 mg,

EVAN - 10 yo-- low - med. functioning,nonverbal autism

Abilify 20 mg 1x daily, 75 mg Trazodone (to help him sleep)

DAVID 8 yo Bipolar/ADHD

Adderall 20 mg daily, 1 mg Risperdal 3 x daily,

50 mg Strattera

and mother to ANDREA -33 yo, their mom -

Bipolar/ADHD, Topamax, Tegretol, Singular, Wellbutrin

wife to BOB - 72 yo, a very tired grandpa

..

[Guest guest]

We've taken my son everywhere with us since day one, so I guess

that's why we don't have as many problems in public or at

restaurants. That's not to say they don't happen but, if they do we

work on it. I usually don't remove him from the situation if at all

possible, because that's what he is wanting. . . escape. We try to

redirect him to something else.

It's hard I know. . .especially with other folks watching. They

have no idea what we parents of autistic children go thru. Yeah,

they probably think it's bad parenting. But I don't pay any mind to

any one else and I don't owe them any explanations.

I had the same problem with going to the store regarding getting

a " toy " everytime we went. That's when we had a really problem with

head banging. If he didn't get his way or the toy he wanted he

would bang his head on the grocery cart and cry for sympathy

thinking this would get him a toy. When you break it down, I've

seen typical kids do this kind of stuff too. Our kids are no

different. . .they just go about different ways to get the same

result. I've seen typical kids tantrum in stores so it doesn't

bother me. But when my son would bang his head on the cart, I

ignored him. I didn't look at him and proceeded on with what I was

doing. . . He got over the head banging after awhile. He doesn't

get a toy just because he does this and that's what he has to learn.

If I give in and get him a toy. . . guess what happens? You guessed

it. . .he would have head banged the next time at the store too.

Just because our kids have a label of autism doesn't make them any

different in these situations. . . all kids practice this sort of

manipultation, just look around and you'll see a kid whining or

tantruming. . .and they are not autistic. We just tend to be on

pins and needles because our kids have a " diagnosis " . But in this

instance, it is sometimes hard to separate what really is autistic

behaviors and a typical kid behavior. I treat my son like a typical

kid in this instance because I wouldn't give a typical kid a toy for

bad behaviors either. Remember you are shaping his

behavior. . .don't let him

shape yours.

[Guest guest]

Betty, I noticed you are giving the Straterra. When do you give it to him? Does it cause him to have any bowel problems? We are giving Karac 40mgs of Straterra and he has been having a lot of problems with loose bowels. I don't know if it is from the Geodon or Straterra. Can tell you how the Straterra makes him feel?

You certainly are brave to take the children with you to the stores. I don't take Karac with me anywhere unless I have a therapist with me to help in an emergency. Pat K

[Guest guest]

, we do not remove our boys every time they put up a fuss while out. It

entirely depends on the situation. If Evan is screaming because he is hungry

and cannot stand to wait any longer, we get him something to eat, FAST. If

is throwing himself all over Pizza Hut because he put, yet another

quarter in the machine after he was told that it was broke, and I would not

give him more money, well, then we leave. If is bawling because he

is told no, you do not get another game right now, he is told to straighten

up and behave and I walk off and finish my shopping. I can no longer take

Evan shopping with me without his mom also being with us and neither will

she. Most of the time, he decides where the shopping cart is going and he

does not want to go thru the check out. When he behaves like and we cannot

get him to behave right, then takes him to the car to wait. Sometimes

he gets a hold of the cart and walks along just like he would if he was out

with his class and aides at the store. it is a toss up and neither of us is

willing to chance his behavior at the store by ourselves. The last time I

did, I had to just walk off and leaving the shopping cart in the middle of

the store because he was screaming and people were beginning to stop and see

what was happening to the boy. What was his problem? He wanted to take the

cart around the outside aisle at the store, check out the doors to the back

and I wanted to get the groceries that I had came for.

BETTY ANN-62 yo, possibly undx'd Bipolar

grandma to

ANDREW - 12 yo-- Bipolar/ADHD, Homeschooled

EVAN - 10 yo-- low - med. functioning,nonverbal autism

DAVID 8 yo Bipolar/ADHD

and mother to ANDREA -33 yo, their mom, also

Bipolar/ADHD

wife to BOB - 72 yo, a very tired grandpa

[Guest guest]

I agree. . .it entirely depends on the situation.

If I head to the checkout and my son hasn't gotten a toy he will

sometimes make a scene, but of course, I'm not going to reinforce

that behavior by going and getting him a toy. We've gotten thru

this pretty well. He has learned that he doesn't get his way all of

the time. He's not so bad as he use to be, (i. e. no more head

banging.)

We had an instance about a month ago with the spitting. He was

doing fine and he had already picked out a toy. But for some

unknown reason he gave me a raspberry. . .well we marched right back

to the toy section and put the toy back. This made him mad, he spit

again, but he got over it. I told him, if he spits. . . no toy. He

hasn't done it since at the store. He's pretty smart and he caught

on.

You do have to look at each situation, but if it's for escape,

attention, or to get his way. . . I wouldn't want to reinforce it.

I think you're right in taking them out for the reasons you do. It

sounds like your judging the reason for the behavior correctly and

not reinforcing it. I'm sure you and your daughter have your hands

full anyway!

[Guest guest]

I had to chuckle at that one. Everytime I think these boys have caught on

they throw another tamtrum, either with me or their mom.

BETTY

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

From: " job19_25a " <job19_25a@...>

He

> hasn't done it since at the store. He's pretty smart and he caught

> on.

[Guest guest]

dear friends

i've been out of touch with books for along time.can any1 tell me how to prepare

for this exam?should i go thru all the text books?plz help!!