Re: New - 13 yr. old son with Down Syndrome/Autism, etc.

[Guest guest]

laughing my *ss off or laughing my apples off

[Guest guest]

gotcha, thanks!

[Guest guest]

terry, i totally agree....even when ashton-queen of mayonaise does crazy

stuff, i have to laugh.....the other day she took her shoe off, tossed it at

my husband, hit him in the balls,!!! well of course she had close

proximity..... and i am sure it hurt him something awful......he spanked her

butt on the spot......lolo i wouldnt call it a spanking, more like a soft

touch acorss the butt.......anyways, she was mad at him ALL DAY...... she

kept telling him " daddy stay, no park " and " daddy stay here, me play " lmao

she didnt want him going to the park with us..... i laughed because she is so

expressive with body language, she crosses her arms, rolls her eyes, lmo

.......it pisses him off, but she did look cute...... that's my girl.......so

even when she does the stupidist things and really makes me insane, i look

for the positive..... like when throwing the shoes, at least she had good

aim, and used her words to express herself......lmao daddy didnt think so :-)

take care,,,,,,, and welcome again

[Guest guest]

In a message dated 10/17/00 7:19:21 AM Pacific Daylight Time,

Imaddenmom@... writes:

<< Imao " >>

Laughing my ass off though some people substitute lmbo which would be

laughing my butt off

Jeannie

[Guest guest]

In a message dated 10/16/00 8:50:28 PM Eastern Daylight Time,

Mashawnag@... writes:

<< ps., didnt someone mention onetime about a vibrating teething ring or

something, the doc and me are trying to find ways to somehow releive this

sensory issue with his mouth, his poor arms look awful. >>

Yea, Me a. Maddie was BIG into grinding and we finally got her to stop.

We used mouth massagers and did TONS of oral massage on her mouth, inside

AND out. Her SI OT did it every week and showed me how. Also, we saw Diane

Chapman down at Loyola and she showed me too. We were very diligent about

getting right in there the second she started grinding. Eventually she

stopped. Now she does a click click sound out the back of her mouth. Sounds

like she's cracking gum. But at least her teeth aren't being ruined. Ask

your OT to show you how to do some oral massage and you can look at this web

page for some massagers.

http://www.new-vis.com

Click on catalog.

Good luck

Donna

[Guest guest]

In a message dated 10/16/00 10:27:11 PM Eastern Daylight Time,

Imaddenmom@... writes:

<< I have only used it 2X for that and it worked

great! We call it a " Mellaril moment. " >>

As opposed to a Kodak moment, right?!?! LOLOL

Donna

[Guest guest]

Yep.....give me the " Mellaril Moment " anytime! LOL!!

Terry

[Guest guest]

In a message dated 10/17/00 10:38:40 AM Eastern Daylight Time,

vainclusion4all@... writes:

<< like when throwing the shoes, at least she had good

aim, >>

Yes, I know this one well. Besides Maddie tossing hers out the window on the

expressway, she has been known to hit people with them. Not deliberately;

they just happen to be in the way. Once, she took off her shoe and threw it

at a guy in Radio Shack. Hit him right in the back. He was not happy,

despite my apologies....

I whispered to the sales girl that maybe I oughta talk my daughter into

tossing the other one at him......LOL She agreed!!

Donna

[Guest guest]

i am with you as i understand and would never mix meds either, as a nurse i

also know they make a Physicians Desk Reference or PDR for natural or herbal

meds, we even have them at work, some families like to use them comes in

handy, and one can also check out any meds Rx or homeopathic, at PDR.net, its

very effecient i find when i look stuff up on nathan, even tell you way more

then drug guides or the docs do. And they say which Rx or herbals not to mix

etc, as they would just for RX's. shawna.

[Guest guest]

what are those, and where do you get them??? shawna.

[Guest guest]

a,

What are what?

Terry

[Guest guest]

likes to lick pantyhose......good thing we're in Hawaii and no one wears

panty hose.....I dread when we move back if he's still into that....

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 15 months and Strong Willed

[Guest guest]

Is there a separate PDR for herbal meds? I know about the PDR; actually, I

prefer the Pill Book or The Complete Guide to Prescription &

Non-Prescription Drugs (It's updated every year) mostly because they are in

English! I have an Herbal Encyclopedia but it doesn't show all of the

interactions prescription and non-prescription drugs.

Terry

[Guest guest]

In a message dated 10/17/00 6:15:24 PM Eastern Daylight Time,

Imaddenmom@... writes:

<< a,

What are what?

Terry

>>

I was just going to ask that! LOL

Gail

[Guest guest]

Thanks, I'll check it out.

Re: New - 13 yr. old son with Down Syndrome/Autism,

etc.

> In a message dated 10/16/00 8:50:28 PM Eastern Daylight Time,

> Mashawnag@... writes:

>

> << ps., didnt someone mention onetime about a vibrating teething ring or

> something, the doc and me are trying to find ways to somehow releive this

> sensory issue with his mouth, his poor arms look awful. >>

>

> Yea, Me a. Maddie was BIG into grinding and we finally got her to

stop.

> We used mouth massagers and did TONS of oral massage on her mouth, inside

> AND out. Her SI OT did it every week and showed me how. Also, we saw

Diane

> Chapman down at Loyola and she showed me too. We were very diligent about

> getting right in there the second she started grinding. Eventually she

> stopped. Now she does a click click sound out the back of her mouth.

Sounds

> like she's cracking gum. But at least her teeth aren't being ruined. Ask

> your OT to show you how to do some oral massage and you can look at this

web

> page for some massagers.

> http://www.new-vis.com

> Click on catalog.

> Good luck

> Donna

>

>

>

>

>

[Guest guest]

my g randson threw one in man s soup in a diner once. we don t eat there

anymore!!!!!! he was not pleasant at all for some reason!!!

duffey48@... wrote: !!!

In a message dated 10/17/00 10:38:40 AM Eastern Daylight Time,

vainclusion4all@... writes:

<< like when throwing the shoes, at least she had good

aim, >>

Yes, I know this one well. Besides Maddie tossing hers out the window on the

expressway, she has been known to hit people with them. Not deliberately;

they just happen to be in the way. Once, she took off her shoe and threw it

at a guy in Radio Shack. Hit him right in the back. He was not happy,

despite my apologies....

I whispered to the sales girl that maybe I oughta talk my daughter into

tossing the other one at him......LOL She agreed!!

Donna

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

[Guest guest]

Or how about lifting up someones skirt that is wearing boots, so he can try

to take them off and sniff them! At church,even!! lol

ita

[Guest guest]

Reuben has also thrown his shoes. Out the window of the bus! Had to go that

night and buy him a new pair. They don;t keep his window down on the bus,

now! He has has also thrown his socks over the heads of people at church.

Thank goodness, we have several special needs children in our church, so I

think everyone is kind of used to things going flying by!

[Guest guest]

Hi again Carole!

I know what you mean about the med merry-go-round. It is so frustrating. We

haven't tried Luvox but I guess from what you describe, Anafranil did the

same thing to . We haven't tried Paxil either, although our

Pediatrician was really pushing it for a while. She doesn't believe in the

psychotropic drugs.....there was a time when I didn't either. But she

doesn't have to live with a kid who is constantly hurting himself or somebody

else and not sleeping to boot! As far as the Respite Workers go, yeh I feel

pretty fortunate right now. We get a block of hours to use per month as

parent vendors. That is, we hire the workers and the State reimburses us for

the cost of the Respite Care. They pay a flat rate per hour to the workers.

For a long time I only had one worker, but then when she couldn't come, I

would be stuck. I can't leave alone for even a few minutes or he

will either be out the door or bang his head on a window or knock over a

lamp, something. So, my son was helping me watch so that I could

get stuff done or go to the store or whatever, so I figured why not use him

for Respite? That worked really well and he has a lot of friends that are so

good with , so I figured what the heck? They make more than minimum

wage and enjoys being with them. It's a win-win! Of course, they

are just out of high school and so maybe a " tad " flaky at times (as far as

taking time off), but, hey, there are ups and downs to everything, right!!

Ha!

I hope you find the medication that will work for your son without having to

go through a bunch. I dont' know why they seem to need changing so much....I

guess somehow their systems just get used to the med and that's when they

need the increase.

By the way, I am having the same problem with the posts....I keep getting the

responses before the questions. But I have noticed a delay of as much as

15-20 min. from the time I send the message until it's posted. The time is

even different on the post. I figured that it was AOL being slow?!?

Good Luck!

Terry

[Guest guest]

hi terry buddy was just dx in aug and we tried luvox which made him angry and

aggresive and he had probs in school which he usually does well there.i guess

paxil is next. i hate all these meds and am not really sure that it will help

that much .mr gr daughter takes catapres and iwill admit it has helped her to

focus and calm down .i like the idea of the patch for that. wonder why the meds

seem to need changing so much ?

that is really great having 3 respite workers. that has got to make a world of

difference for you. my daughter only has me !she did get alarge voucher from ddd

for extra hours this summerso iwas there almost every day. she did not always go

anywhere but could at least work uninterrupted . he does get 6 weeks of summer

school. i think she and s-i-l would love to have a mellaril moment!!!!!!

Imaddenmom@... wrote:

Hi Carole,

I don't know a lot about 5htp other than it has been recommended for kids

with autism. I know that it is a combination of amino acids. I actually

bought some at a Vitamin store and then read the label. It turned out to be

a " combination " and included Valerian Root, which acts as a sedative. I read

somewhere that you shouldn't mix 5htp with drugs that affect seratonin

levels. is taking Zyprexa, which is an anti-psychotic. I am afraid

to combine the 5htp with the other drugs, especially the Zyprexa. What

drug(s) have you already tried for the behaviors? We have done Ritalin

(yeah, like he really needed THAT! He was bouncing off the walls!), Catapres

(patch), Klonipin, Prozac, Zoloft, Risperdal (which worked REALLY well until

he had a reaction to it!), Anafranil, Tegretol, Mellaril and Depekene.. I'm

sure that there are more that I am forgetting, but these are the ones that

come to mind. The Zyprexa helps some, but he still is fairly aggressive and

has the self-injurious behaviors on a daily basis, sometimes several times in

a day (like 50 - 60). It is better than it was.....there was a time when we

actually had to wrap him up in an over-sized sweatshirt because we couldn't

get him to stop hitting himself. It broke my heart.

I have 3 respite workers. Two guys and a girl. One of them is our 17

(almost 18) year old son. They are all teenagers and actually that works out

pretty well. I used to have women (like about my age or older). But

responds to the teens, particularly the boys. He likes to " hang out " with

them. I use one of them for a few hours every day. It really helps. I

know what you mean about him getting stronger.

We all have bruises and scratches courtesy of on our arms or neck,

whatever. My 17 year old asked me one day what I was going to do when

is bigger (he is 90+ pounds and abouit 4 foot tall). He said, " You

know Mom, I won't always be here. " Uh-huh! I asked the doctors at UCLA if

there is something I could give if/when he is really out of control

and the doc told me Mellaril. I have only used it 2X for that and it worked

great! We call it a " Mellaril moment. "

Terry

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

[Guest guest]

Hi Terry,

My name is Marisa and I have a 10 year old son with very similar issues.

His name is Brook. First of all Brook has been seeing a pediatric physical

therapist since he was 2 years old; he didn't walk until he was 3yrs, 8

months. He has been wearing orthotics on both feet which she casts about

once a year since he was about 4 yrs old. This greatly helps the way that he

walks. Otherwise he would walk on the insides of this feet and the BIG issue

here is that we are preventing future hip and knee problems by keeping his

legs in the proper alignment.

He also has a seizure disorder and is presently switching from Depakote to

Lamictal. What kind of seizures does have? Brook has had 3 different

kinds starting from when he was under 1 yr old.

He also had reflux and at the age of 4 had to have a Nissin fundoplication

and g-tube. Yes, he's a very picky eater but has greatly improved over the

last few years. After the surgery his self injurious behaviors greatly

improved. We have had 3 different behavior therapists work with us over the

years.

Earlier this year he was evaluated by the school psychologist who put him

at about 12 months cognitively and 17 months for language. We recently moved

and Brook has been doing well at his new school. His new teacher is getting

him to talk a little. He now says " hi " sometimes, she is using a weighted

blanket on his lap to help him focus. Apparently this is working great and

he is making progress. Hope to talk to you soon.

Marisa

Mom to Miles 13, Brook 10 and Gennie 3 yrs.

[Guest guest]

Hey Marissa!

I can't get over being able to communicate with parents who know what this is

all about! I feel like we have been " putting out fires " for such a long

time and it takes so much energy that it's hard to look ahead to the " long

run " . Do you know what I mean? has partial-complex and absence

seizures. Anymore, it's hard to tell what is " seizure " and what is behavior

with regard to the partial-complex seizures. His absence seizures seem to

come in spurts, sort of. Right now they are under control for the most part.

We had an eeg done in May and the neurologist told us that it showed " little

seizure activity. " I should hope not...he was on huge doses of Tegretol and

Depekene. We have since lowered the doses of both. We got him off of the

Tegretol for a little while but his behavior deteriorated to the point where

even the doctors felt that it was more of a disability than the seizures so

they put him back on it. We are trying to wean him off Depekene now. It's

peculiar because when he was off the Tegretol, the Depekene level went

through the roof even though we had decreased it by more than half. But he

started having absence seizures again. The Depekene is supposed to control

those, not the Tegretol. But, as soon as we put him back on the Tegretol,

they stopped. Go figure! His feet are a big concern to me and I need to

make a decision on how to proceed. I think the Shriners Hospital in LA is

probably the best place for us to go. We live a distance from there so it's

a matter of trying to get our ducks in a row (so to speak) so we can get down

there. has had his g-tube since he was 2 yrs. old. Actually, we

thought when he started losing skills (speech,etc.) between 2 & 3 that it was

from " trauma " caused by a 3 month hospitalization just before he was 2. He

had terrible reflux (repeated pneumonias, chronic wheezing) and chronic

vomiting. Looking back, it seems like all we did was feed him, clean up the

mess, and feed him again. I kept telling the doctors that something was

really wrong...I had 4 older children and wasn't a stranger to the difference

between " spitting up " and vomiting. Finally, we got an appointment at CHLA

and they admitted him immediately. He had 3 surgeries in 3 months. They

kept thinking that there must be an obstruction so they would go in and take

out the adhesions. Nothing. Then they tried to make a new connection

between his stomach and duodenum, nothing again. Finally, they gave up; put

in a jujunostomy tube (for continuous drip feeding) and a g-tube for draining

his stomach because not even spit would go through from his stomach to his

intestines. He did that for about a year and we finally got involved in a

" compassionate need " drup program for cisapride. It made the difference for

him being able to clamp his g-tube and eventually being able to feed him

through it. Cisapride was taken off the market this year due to potential

lethal side effects. Now the only way we can get it is to go to Mexico where

it is still available! When he was 4, the surgeon tried to do another

surgery so that he could eat by mouth. He did a Nissen at the same time.

The surgery didn't work so he still is fed only by g-tube. He has always had

terrible problems with constipation. Over the past few years, he has

developed a new behavior - " with holding " . That means he tries NOT to poop

because it hurts. So the cycle just gets worse. He can go 7 - 10 days

without having a bowel movement! I had to give him an enema a couple of

weeks ago and he didn't even pass the water for several hours. Sometimes

our whole world revolves around whether or not has pooped! He was

diagnosed with DS/ASD when he was about 6 years. Not too long after that,

his SIB was so out of control that we had to use restraints to keep him from

hurting himself badly. What a nightmare! Finally, we got to a neurologist

who said that at least part of his behavior was seizure activity and started

treating him with anti-convulsants. They worked really well for a while, but

his self-stim (spinning, flapping, etc.) behavior really escalated. Over the

years, we tried so many " plans " , techniques, and meds to get a handle on

things. This past year we connected with the Down Syndrome Clinic at UCLA

and they have been the most knowledgeable and helpful for sure. There is an

excellent Autism Clinic at UCLA as well, but it targets " autism " , not

necessarily the dual dx. Sometimes it seems like when we are focusing our

energy on a particular problem (like SIB/aggression), something else goes

whacky.....oh well, I guess that what makes life interesting! I guess I

needed to vent....thanks for being there to " listen " . :) I am looking

forward to hearing from you again.

Terry

Mom to (age 13)

[Guest guest]

nahtan has accidently racked my hubby a time or two also!!! men have no sense

of humor about it.

[Guest guest]

thanks!

[Guest guest]

i dont remember now,lol, i think it was the chewing tubes? not sure though,

starting ot think that alzhiemers is contagious form the residents at work,

haveing memory probs alot lately, hubby says its stress hope thats all it is.