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

[Guest guest]

I have a 10 year old son, , who is Down Syndrome, AHDD, diagnosed autistic

and Oppositional Defiant Disorder at age 8 (almost 9). Yes, he does walk on the

inside of his feet. I had just noticed it a couple weeks ago. I forgot to

mention it to his ped at the last visit, last Thursday, so I was thinking I need

to make another appointment.

is high functioning, and functions on about a 1st grade level, so I feel

pretty blessed. I've been homeschooling him for 3 year and most of the

curriculum has been repeats in a different style of 1st grade learning (I don't

want him to memorize the answers using the same thing). He is in 3rd grade on

penmanship, so I understand the scatter skills.

The biggest improvement I noticed with was when we put him on a gluten

free diet. I know you mentioned yours is fed through a g-tube, and I don't know

much about that. Is the formula he gets gluten free? Gluten is in wheat, oats,

barley and rye. actually tested negative for celiac, but showed drastic

improvements with the diet. His baby brother is being tested for celiac, as he

gets an awful blistered diaper rash when he gets wheat. But, to my point,

would just totally " wig out " when he got wheat. He would get over emotional,

aggressive, bouncing off the walls excited, over self-stimming, you name it.

Try to track what your son is fed and see if it corelates with his behavior. I

know the " statistics " say that only 40% are helped with the diet, but it was

such a drastic improvement for other children that I thought it was worth a try.

We also do cod liver oil capsules.

Yes, I was so happy to find this list. When my computer crashed recently for 3

days, I felt like a lifeline had been cut......

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]

I hadn't thought about the hips. has really loose hips too. He can still

put both feet behind his head, crossed at the ankles. He sometimes mentions his

feet bothering him, but he can't be specific enough for me to know. He just

points to his feet. I wasn't even thinking surgery, I was thinking shoe

inserts. I've seen them on TV where it rotates the foot to be in the right

position, but I forgot to mention it to his ped. I can't imagine , at 69

pounds, being in a full body cast.....ikes!!

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]

In a message dated 10/16/00 2:30:08 PM Eastern Daylight Time,

Imaddenmom@... writes:

<< I am looking forward to hearing from you all. It's really nice to

know that you are there! >>

Hi Terry,

Welcome!! I think you'll feel very at home here. We all know what you're

going through. My daughter will be 7 in November and has DS and ASD. She

was dx'd at 5. She doesn't walk on the insides of her feet, but she sure

does lots of other strange things with her feet.....LOL

Looking forward to hearing more from you.

Donna

[Guest guest]

Hi Loriann,

Thanks for responding. I just checked 's formula (Ensure) and the

only grain (?) I can find in it is corn. It has safflower and canola oils,

but otherwise, it's primarily vitamins and preservatives. SIGH! Do

's feet bother him? has never been a great walker...we've had

problems with " dead dropping " for as long as I can remember. It seems like

lately though he is wanting to walk even less and it's hard for me to know if

it hurts or if he is just being a stinker! He doesn't let us know when he is

in pain...that is, he doesn't point or cry or anything. Sometimes his

behavior is a reflection of pain..like when his stomach is bothering him,

which is a lot. He will be aggressive or self-injurious and then we will

find blood in his g-tube or he will be real gassy or whatever..

We did take him to Childrens Hospital last year for his feet. The Nurse

Practioner that checked us in looked at walk and said that he

definitely had a problem. When the doctor came in, he looked at an x-ray of

one of 's feet and said he was fine. He never even watched him walk.

A friend of mine is a supervisor at CCS (California Childrens Services) at a

school site where they evaluate kids and do therapy. She said that she

wondered if the problem is in 's hips, not his feet. He is really

loose, joint-wise. She said that if that was the problem, that the doctors

would want to do surgery and that he might be in a body cast for months. I

told her forget it....he's had too much medical stuff over the past

years...he doesn't need more trauma.

Terry

mother of (13 yrs.) DS/ASD

[Guest guest]

Yea, and they don't get our jokes either.......they just don't have the

perspective we do. How can you not have a sense of humor with a child that

wants to sniff everyone, and then pronounce them stinky? That's 's new

form of hello to strangers.

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]

My sentiments exactly! Yeah, is so loose that when he lays down, if

you can't see his head, you can't tell if he's laying on his back or his

stomach! I think they call if the " frog " position. I have tried to

get high top shoes that will prevent him from bending his ankles, but so far

no luck. If I get the shoes big enough to fit his flinstone feet, then they

are too wide at the top to do any good. Somebody mentioned shoe inserts to

me too. I will let you know if I find out anything encouraging about them!

Terry

Mom to - DS/ASD

[Guest guest]

<< << I am looking forward to hearing from you all. It's really nice to

know that you are there! >> >>

Hello,

I am Jeannie and mom to Mark who is 10 and happens to have down syndrome,

autism, adhd, pdd, icd. He is a busy boy! Mark lost all language he had

acquired at the age of 3 along with the signs he did learn. We are now

trying PECS. I also have a 9 year old daughter named . These 2

keep me very busy! Nice to meet you !

Jeannie

mom to

b b

and

c Mark c

[Guest guest]

terry, nice to meet you, my oldest son is nathan, he is 9yrs with ds/pdd --

pervasive developmental disorder or autism for short, im sure you probably

allready knew that. he is a very active boy, also SIB, self stims, sleeps

very little, eats table food regualaly sort off still gags often, has

larynpharyngeal incoordination, has started to really talk over the last

year, is even droppin his sign lang more and more each day, ofcourse i play

interpreter often for others he is talking to. he also has a mile long list

of DX but the main are pretty much the same, chronic ear infections, low

immunoglobins, blah blah blah, other thaen being ill often with infecdtions

and/or viruses he is a rather heathy boy, no heart troubles, no real GI

troubles, other than does go often but always has 1-3 x's dly sometimes even

more. ive been told often nathan is high functioning, but many times we feel

he more in the moderate range, is in third grade and just starting to learn

to read, but we are proud of all his accomplishments, he can be very lovy but

mostly isolates himself, is getting better at social interaction with age and

his behaviors have improved wit age too, we have used biobehavioral therapy

since a toddler when all this autism stuff started, and a long list of meds,

now is currently taking Ritalin, and Clomipramine. Sorry about such a

thesis,lol, i could go on foreever, you will really love this group, a very

caring nd helpful group. shawna.

[Guest guest]

oh, me again, nathan has walked since about 22 months but does it normally,

and he also grinds his teeth often, among biting himself and lately keeps

spitting, uuhhh, driving me nuts, i know he had to see another boy do it,

probably at school, he is a huge mimicer, and echolalic.

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. shawna.

[Guest guest]

nathan has hyperextesion in his joints too, also does that leg thing still at

70LBs,lol, puts some of those gymnasts to shame,lol. he also sees a

rheumatolist, many individuals w/ds get rheumatiod arthritis, and often we

think he is in pain, but he doesnt ever mention pain, but sometimes we think

it comes out in his behavior, like when he head bangs on the wall maybe he

has a headache, i ask him often head hurt? or head owie, pointing but he

always says " no " .Many of his joints do pop or crack when he moves, and he

hates walking lots too, he is one of those dead droppers too as i read with

the stroller earlier, he wont even run the few blocks home from school , just

a few feet then walks, his little brother runs the whole way.shawna.

[Guest guest]

they can make special inserts just for him, my hubby had it done, apparently

he wasnt walking right and this was causing most of his back and knee pain, a

couple months of these $200 inserts with warranty thank god, and he is doing

great, he wears them in his tennies and his work boots too, just transfers

when needed. Oh he got his from our chriropractor, but i imagine a orthopedic

can dothe same.

[Guest guest]

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 i am glad you have found this support group. i started here in sept

after my gson was dx.he is like your son in that he will be so sweet and then

get hateful over nothing.he does not have the health probs that your son has

just the behaviors. they told us that was where he fit on the spectrum of

autism. he is getting too strong for me to handle now. i am his respite worker

also.yu mentioned the meds 5htp could yu tell me what yu know about that. he

tried one med withn no luck and will soon be trying another . carole

Imaddenmom@... wrote:

Hi!

My name is Terry and my son's name is . He is 13 ..he does not have the

health pr 1/2 years

old. He has Down Syndrome and was diagnosed at age 6 with Autism.

We had no idea that there was[is] a support group for families like

ours! What a relief! We have been very active in the family support

community with various support groups and family resource centers,

but we have never felt like we " fit " in with any particular group!

has a variety of medical problems including psuedo-

obstruction of the small bowel (which means that his intestines acts

like it is obstructed when it is not), a seizure disorder, chronic

ear infections, yahdah, yahdah..... He is fed by g-tube only and is

non-verbal. We have always felt that the Autism is his most

debilitating problem...that is, due to his not being able to

communicate effectively and his behaviors (SIB, aggression, and self-

stim). Over the years, we have tried various Behavior Mod.

techniques and a long list of meds (both prescription and

homeopathic) Right now, is taking Zyprexa (behavior) and

Tegretol (seizure control & behavior), Depekene (seizure control),

Prevacid (gi bleeding) and lots of Milk of Magnesia/Colace for

constipation. We recently heard about 5HTP, but I'm kind of leary

about giving it to him with the other meds. He does take DMG and

Fish Oil caps daily. He can be such a sweetie and then, out of the

blue, he is biting, pinching, or scratching for no apparent reason.

He does have sensory integration problems for sure! We just did his

new IEP and have addressed those issues for the first time on paper!

FINALLY, we got a Behaviorist who understands how important SI is and

made recommendations in her Behavior Plan! What a concept!

According to his Psyche Report, is operating at about 12

months cognitively, although his developmental skills are fragmented

to say the least. Whenever he is assessed and they tell me that

he " can't " do something, I wonder how much he " can't " because he is

sick of them trying to get him to do it!? I wish they would just get

it through their heads that he ISN'T going to put those shapes into

the sorter!

also walks on the inside of his feet; almost like he is

walking on his ankles. Does anybody else's kid do that? I have been

trying to have him evaluated by an orthopedic, but am having problems

finding one who cares.

I am looking forward to hearing from you all. It's really nice to

know that you are there!

Terry

Mom to (13 yrs) DS/ASD

eGroups Sponsor

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

[Guest guest]

Hi Terry and welcome! My son Reuben is also 13 1/2 with ds and autism. He was

diagnosed with autism when he was about 10. He is on Tegretol for seizures.

He is mostly non-verbal. His receptive language is pretty good. He lets us

know what he wants by gestures and a few words. He self-stims a whole lot. He

doesn't play with other children, but he loves to watch them play. He flips

spoons and other like objects almost constantly. He also grinds his teeth.

Only a few of his permanent teeth have come down. The dentist said that he

would probably keep the rest of his baby teeth. He has a whole lot of sinus

problems, too. He keeps a snotty nose all winter long. Antibiotics help while

he is taking them and then it comes right back.

Reuben walks with his feet turned outward. I hadn't notice it too much,

until lately, it seems to be worse. Haven't tried an orthepedic doctor yet.

Reuben isn't on any meds right now, except for the Tegretol. We tried

Risperdol, but it didn't help at all.

Glad you are here,

ita

[Guest guest]

Same here with the " frog " position! It looks so weird!

ita

[Guest guest]

Terry,

lmao i know its not funny when it happnes, but i had to laught at matthews

" mellaril moment " as you put it.....lmao my daughter ashton takes mellaril

10mg at night to conk her butt out....she has always been a NONSLEEPER and

two or maybe three years ago, i decided i was getting old and needed sleep

and she does too.....so we chose the drugging route/./// bit it works.....she

takes .o5mg of clonidine at 9-930 pm and the mellaril right after.....she is

usually asleep in thirty minutes.....but not always......we still have

allnight slumber parties with the rubber snake, zena, and canned

goods......what a life..... i too worry about when ashton gets bigger and i

have no control....hopefully i will get to a solution before

then.....takecare, leah-mom to ashton the great, ds, pdd(i think) omd,

sensory issues, and tons of med stuff

[Guest guest]

welcome terry to you and matthew!!!! and the rest of your family!!!! we are a

great circle of support for each other.....when i am feeling really depressed

with nowhere to go i get online and type away to my cyber buddies....although

some fo those cyber buddies turn into real live friends in person....... :-)

some of have met and gotten drunk together, done mcdonalds, etc.....heheh e

[Guest guest]

Leah, You're right! You gotta have a sense of humor to keep going when

you're dealing with this stuff on a daily basis! There are actually a

lot of moments when we are laughing and the outside world kind of looks at us

funny!

Terry - Mom to - Bless his little heart!

[Guest guest]

Ya gotta love him! :)

Terry

Mom to - 13 yrs. - DS/ASD

[Guest guest]

laugh my a** off.....that's why I used lmbo being laugh my butt off.

There's also rotflmao which is roll on the floor laughing my a** off

Loriann

[Guest guest]

a

My 4 year old uses a piece of rubber tubing tied into a necklace which we

put around his neck. He chews it when he is aggrivated, or bored. It also

seems to help him focus and stay on task with activites at school. It is the

only thing we have found that he can not chew though. It was given to us as

a suugestion by his OT and it works great for us. We buy it by the box from

a co. called Theraproducts. I can get you more info if you like...it's at

home and I'm at work right now.

Mom to 4 DS no DX of ASD yet but driving us nuts

Guam

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

etc.

oh, me again, nathan has walked since about 22 months but does it normally,

and he also grinds his teeth often, among biting himself and lately keeps

spitting, uuhhh, driving me nuts, i know he had to see another boy do it,

probably at school, he is a huge mimicer, and echolalic.

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. shawna.

[Guest guest]

JJ has chew tubes. I get it 10 yards at a time.

& Garry, parents of (10 ds), (9 today ds/g-tube), JJ (6

ds/autism/celiac), (6 ds), and Esther (3 ds). All adopted.

[Guest guest]

In a message dated 10/17/00 1:57:32 AM Eastern Daylight Time,

hsmyangel@... writes:

<< Yea, and they don't get our jokes either.......they just don't have the

perspective we do. How can you not have a sense of humor with a child that

wants to sniff everyone, and then pronounce them stinky? That's 's new

form of hello to strangers.

Loriann >>

LOL LOL LOL I love starting my day with posts like this!!!!! Thanks!!!!

LOL LOL

Gail

[Guest guest]

lmao lori, this is too funny!!!! ashton licks people occasionally, has gotten

better though.....heheh

[Guest guest]

ok, you guys. I thought I was fairly savvy when it comes to computer

lingo....but " Imao " has me stumped! Help me out here?

Terry

Mom to - age 13 - DS/ASD