New to Group

[Guest guest]

-Welcome to the group. I am not familar with that helmet. I just

want to say this group is wonderful and very supportive! Please

keep us posted on 's correction!

Angie and Jenna(STARband grad 1/21/03)

-- In Plagiocephaly , " kskoob " <Teachrok@a...> wrote:

> Hi. My son is 6 months old and has been in a helmet for 3

> weeks. I noticed his flattened head at around 4 months, I brought

it

> up to our pediatrician at our 4 month check up and she agreed it

was

> plagiocephaly and referred us to a specialist. We live in NC and

the

> helmet we got is not the starband or DOC band it is made by Danmar

> Products. The way I understand this helmet to work is that is just

> keeps from rolling onto the one side of his head that is

> flattened. There is a piece of foam (looks like a bar of soap)

> velcroed to the back of his helmet on the left side to keep him

from

> rolling his head in that direction. Anyway, my question is that if

> anyone has a helmet similar to this how long did it take to see

> results? The ot told us we would see results within a week or two,

> but I haven't noticed much change. There is a place on the bottom

of

> his head that has popped out and created a ridge. Is this what is

> suppose to happen. I have felt a lot of guilt about having

to

> wear this helmet, so I am probably just being paranoid. I just

want

> it to work, so he can have a beautiful round head. is such

a

> happy and easy baby and he has handled wearing the helmet

> wonderfully. Thanks for listening- any input would be appreciated.

> Kim mother to (6 months) banded 5/23

[Guest guest]

Hi Kim,

Welcome to the group. Like Debbie said we have had members use the

Danmar helmet but yours sounds different. As long as it's working is

all that matters. I'm sure you'll start to see results soon. Guilt is

part of being a plagio parent. We've all experienced it. This isn't

your fault! How could you have prevented something you knew nothing

about? It does get better!

> Hi. My son is 6 months old and has been in a helmet for 3

> weeks. I noticed his flattened head at around 4 months, I brought

it

> up to our pediatrician at our 4 month check up and she agreed it

was

> plagiocephaly and referred us to a specialist. We live in NC and

the

> helmet we got is not the starband or DOC band it is made by Danmar

> Products. The way I understand this helmet to work is that is just

> keeps from rolling onto the one side of his head that is

> flattened. There is a piece of foam (looks like a bar of soap)

> velcroed to the back of his helmet on the left side to keep him

from

> rolling his head in that direction. Anyway, my question is that if

> anyone has a helmet similar to this how long did it take to see

> results? The ot told us we would see results within a week or two,

> but I haven't noticed much change. There is a place on the bottom

of

> his head that has popped out and created a ridge. Is this what is

> suppose to happen. I have felt a lot of guilt about having

to

> wear this helmet, so I am probably just being paranoid. I just want

> it to work, so he can have a beautiful round head. is such

a

> happy and easy baby and he has handled wearing the helmet

> wonderfully. Thanks for listening- any input would be appreciated.

> Kim mother to (6 months) banded 5/23

[Guest guest]

> HI!

>

> I'm the mother of Shane (6) who is being evaluated for

> High Functioning autism/Aspergers by a psychologist.

> I knew from about three months of age, when Shane

> wouldn't look at me and flapped his hands, that

> something was up. Other members of our family include

> his brother, Brett (4) and my husband, their daddy,

> Dan. We live near Buffalo, NY so if anyone is closeby

> I would love to know. I have been reading a lot about

> Aspergers these past two months when our son's school

> psychologist suggested that he may have this syndrome.

> Shane has the meltdowns, frequently, and doesn't do

> well with changes. He lacks empathy, and doesn't know

> how to read the emotions of others. He talks of

> details, but doesn't know how to have a conversation.

> He's bright and very logical. He has mood swings and

> shows signs of depression when frustrated or angry.

> He is a sensory seeker so he does things to the

> extreme! He's a daredevil with a high tolerance for

> pain and needs constant supervision because he does

> some really impulsive things. There are alot of times

> we need advice and need others support and input.

> Talk to you soon!

>

>

,

Sounds like you're in the right place. Welcome to the board.

Kathy

[Guest guest]

Hi

Welcome to the group,

I am Dawn - mother of Bradley-6-AS/OCD/ADHD and Ally-5-NT.

This is a great group of people and a wonderful source of information and

experience, ideas, suggestions and sometimes just a shoulder to cry on or

an ear to listen.

Your son sounds like an Aspie to me. Just my opinion.

Jump in anytime and welcome.

Dawn

HI!

I'm the mother of Shane (6) who is being evaluated for

High Functioning autism/Aspergers by a psychologist.

I knew from about three months of age, when Shane

wouldn't look at me and flapped his hands, that

something was up. Other members of our family include

his brother, Brett (4) and my husband, their daddy,

Dan. We live near Buffalo, NY so if anyone is closeby

I would love to know. I have been reading a lot about

Aspergers these past two months when our son's school

psychologist suggested that he may have this syndrome.

Shane has the meltdowns, frequently, and doesn't do

well with changes. He lacks empathy, and doesn't know

how to read the emotions of others. He talks of

details, but doesn't know how to have a conversation.

He's bright and very logical. He has mood swings and

shows signs of depression when frustrated or angry.

He is a sensory seeker so he does things to the

extreme! He's a daredevil with a high tolerance for

pain and needs constant supervision because he does

some really impulsive things. There are alot of times

we need advice and need others support and input.

Talk to you soon!

[Guest guest]

In a message dated 7/20/2003 10:38:57 PM Pacific Daylight Time,

kirhockey@... writes:

> hi everyone---I just joined this group--i'm looking to discuss

> diffuse scleroderma with anyone---especially in new england--have

> much to learn--thank you

>

>

Hi & Welcome to the group :-) What's yer name? Whose yer Daddy? Ok Ok <grin

> got carried away with the Rock and roll. I hope your feeling better soon I

have AS a cousin to scleraderma and I am in california.

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

<A

HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\

</A> < latest published work.

<A

HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\

pictures</A> < latest photos

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A>

< 's Web Site

[Guest guest]

Hi.

My daughter has diffuse SD (diagnosed August 2000) and multiple sclerosis

(diagnosed February 1991). It gets confusing with the two going at the same

time. However, after she started the antibiotics in early 2001 and amended her

diet by eliminating sugar, carbs, and dairy, she has had much improvement in the

SD symptoms. Her skin loosened and she gradually was able to reach her arms up

and behind her....So many improvements I can't recount them all....Severe pain

in wrists and arms went away. No longer has acid reflux. But there are still

problems and we have a way to go. Good luck to you.

Ellen

Re: rheumatic new to group

In a message dated 7/20/2003 10:38:57 PM Pacific Daylight Time,

kirhockey@... writes:

> hi everyone---I just joined this group--i'm looking to discuss

> diffuse scleroderma with anyone---especially in new england--have

> much to learn--thank you

>

>

Hi & Welcome to the group :-) What's yer name? Whose yer Daddy? Ok Ok <grin

> got carried away with the Rock and roll. I hope your feeling better soon I

have AS a cousin to scleraderma and I am in california.

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

<A

HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\

</A> < latest published work.

<A

HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\

pictures</A> < latest photos

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon

Music</A> < 's Web Site

[Guest guest]

Hello - sorry don't know your first name

Welcome to the group. There are many people here with diffuse scleroderma -

my daughter is one. We're all happy to talk to you so please ask any

questions you have. Hope to hear back from you soon.

Chris.

> hi everyone---I just joined this group--i'm looking to discuss

> diffuse scleroderma with anyone---especially in new england--have

> much to learn--thank you

[Guest guest]

Hi Jodie! I used to think my son Mark was the one and only king of awful

behavior. My husband jokes he is the original " resident evil " (a title of a

movie). Behavior for Mark has been such a big factor and I think always will.

He is definately " high maintenance " . How to deal with it, depends on the

situation, where you are at the time, etc. If in public, you have no choice

sometimes but let them have their trantrums or carry them away from the

situation. Mark has been known to bite himself continually when he gets mad,

he'll throw anything within his reach at your head or bite you. Since the start

of my last two supplements and being more careful of his wheat/flour intake,

Mark's behavior has improved. He still has bad moments, days and weeks, not

every second for all things.

If he won't cooperate, it is up to the therapist to figure out how to re-engage

him.. Sometimes doing a different, easier activity is needed. Mark's therapist

is making him blow harder horns and he is starting to act up again. Some of the

refusual may be due to frustration at not being able to do the activities. Or

many of these children also tire easily.

If you want to know about the therapists' credentials, you have to ask if she/he

has experience working with apraxic children and for how long. What techniques

or therapy have they found that works more successfully.

Good luck and keep me updated.

Selena

[ ] New to Group

Hi! I'm new to this group. I have a 4-year-old son who has

verbal apraxia and a 6-month-old son who is developing normally. I

have read a lot of posts and see that a lot of moms have started

their kids on Omega3/Omega6 fatty acid supplements. I have also

started Cory (my 4 year old) on a supplement. He is

taking " COROMEGA " , which was also recommended in " The Late Talker "

book. Anyone who

hasn't yet read that book, I strongly recommend that you do so. It

has become my bible. Can anyone recommend any other books that are

important references for parents? My biggest reason for starting

Cory on a supplement was because of his behavioral problems. Is

anyone else having behavioral problems? How do you handle them?

What do I do about refusal to cooperate during a speech session?

(Meaning he puts his head down or covers his eyes, will not repeat

words etc. (I could go on)) Does anyone have any advise about what to

ask an new SLP (as far as finding out if she is qualified and how

much experience she has had with an apraxic child)? Thank you all for

any advise you can give, I am desperate for interaction with people

who know what I am going through! Please e-mail me.

Thanks JODIE

[Guest guest]

My wife has diffuse SD from Sep. 2002.

She couldn't stand up in the chair by herself from Nov. 2002. even she

couldn't raise her hand.

Our family went to the Havard Univ. to see Dr. Trentem Dec 2002.

and got the prescription Minocycline 2 capsules per day.

But just with Mino 2 capsules per day don't cure my wife.

she couldn't tolerate the 2 cap. mino a day. she got diahrrea every day

with 2 cap. Mino.

she made lower the 1 cap mino a day. but she couldn't tolerate it &

diahrrea every meal either.

and her weakness become more and more with mino only.

so Our family went to Dr. Sinnot who is in Ida Grove in Iowa in U.S this

march.

He got the IV treatment for 7 days during staying in the Iowa.

from 300 mg cleomycin to 900 mg cleomycin.

and he gave my wife Doxycycline 1 capsule a day instead of Mino.

after we come back to Seoul, Korea.

My wife got a 900mg IV a month & Doxycycline 1 per day & Predsonie 5mg

per day & Vitamin until now.

When we came back from U.S, my wife condition is worse for 2 months

because of IV Treatment & Doxycycline. ( Many patient called it Hex.

Symptom - One step back for the 2 step forward in the FAQ )

from 1 months ago, My wife begin to get up in the bed by herself.

and 2 weeks ago, she begin to drive a car by herself.

Now, she got acid reflux, ulcer, lose too much weight. in her ankel a

little bit pain, a darker skin,

sometimes headache.

but she can stand up & walk outside of her house to have a shopping and

she can drive a car.

Now I want to know how to increase her weight & reduce acid reflux & her

ankle pain & headache ?

I believe the treatment ( IV treatment & Doxy. & Predsonie(?) & Vitamin)

is working.

and I believe in Jesus Christ who lead to the Dr. Sinnot and Dr.

Trentem.

Thank you

from Seoul, Korea

2003.7.25

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

Yoon Jae Ho

POSCO Research Institute

82-16-708-8227

82-2-3457-8228

yoon@... <mailto:yoon@...>

jhyoon@... <mailto:jhyoon@...>

MSN Messenge beowulfkorea@... <mailto:beowulfkorea@...>

http://ie.korea.ac.kr/~supercom/ Korea Beowulf Supercomputer

Imagination is more important than knowledge. A. Einstein

Re: rheumatic new to group

>

>

> In a message dated 7/20/2003 10:38:57 PM Pacific Daylight Time,

> kirhockey@... <mailto:kirhockey@...> writes:

>

> > hi everyone---I just joined this group--i'm looking to discuss

> > diffuse scleroderma with anyone---especially in new england--have

> > much to learn--thank you

> >

> >

>

> Hi & Welcome to the group :-) What's yer name? Whose yer Daddy? Ok

Ok

> > got carried away with the Rock and roll. I hope your feeling

better soon I

> have AS a cousin to scleraderma and I am in california.

>

> Ann Pritchard

> 'Deep in the center of our beings

> is an infinite wealth of love'

> http://www.rheumatic.org/medhist.htm <http: www.rheumatic.org

medhist.htm?

[Guest guest]

In a message dated 7/24/2003 5:35:58 PM Pacific Daylight Time,

jhyoon@... writes:

> from 1 months ago, My wife begin to get up in the bed by herself.

>

> and 2 weeks ago, she begin to drive a car by herself.

>

> Now, she got acid reflux, ulcer, lose too much weight. in her ankel a

> little bit pain, a darker skin,

>

> sometimes headache.

>

> but she can stand up & walk outside of her house to have a shopping and

> she can drive a car.

>

Hi

Congrats to your wife. Shopping and driving the car is a big plus and now

that she can do that she will get better faster. I take Protonix for my Gerd,

and also now Cochicine, but everyone is diffrent. I am glad she can drive and

shop again I remember when I was able to shop and drive a car again. What a

great day!

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

<A

HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\

</A> < latest published work.

<A

HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\

pictures</A> < latest photos

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A>

< 's Web Site

[Guest guest]

Hi Yoon

Thank you for sharing good news with your wife. I'm very glad to

know your wife's progress. One of our friends in Japan whose daughter

lives in Iowa have been treated by Dr.Sinnot too. I sincerely admire

your dedication to your wife. Congratulations!

Norio

from Nagoya Japan

[Guest guest]

I would recommend you read up on what a developmental language

disorder is and clarify with the professional why your child was

diagnosed with that vs. an expressive language disorder -or mixed

expressive-receptive language disorder. Were you aware that

a " Developmental expressive language disorder is a disorder in which

a child has lower-than-normal proficiency for his or her age in

vocabulary, the production of complex sentences, and recall of

words. "

http://www.nlm.nih.gov/medlineplus/ency/article/001544.htm But...

your child is just two. Why didn't they just diagnose your child

with a " severe expressive language delay " which is what many of our children

were first diagnosed as? (severe expressive language delay translates

basically to late talker or not talking yet)

Aphasia is a language disorder. Developmental language disorder

for a two year old 'may' have the connotation that your child has some

receptive delays in understanding language -is this what they found? If not -I

would have the diagnosis changed -unless they have reason to believe

" Developmental language

disorder " is appropriate (and/or go for a second opinion)

You also in general do not want the word " developmental " used at all

if you are concerned about getting speech therapy covered by

insurance in almost all cases.

I don't know if your child is verbal yet -you say he is labeling

things -how? Verbally?

When you say your child does not request anything -are you saying he

doesn't point to what he wants? Does he have any nonverbal ways to

let you know what he wants like grabbing your shirt and pulling you

over to the shiny yellow truck at the toy store? If you ask him a 2

part command like " Go get your sneakers and bring them to me. " Does

he understand?

It would be hard for anyone to diagnose him with verbal apraxia

http://www.cherab.org/information/speechlanguage/verbalapraxia.html

if he is nonverbal. Best they could do for now is diagnose your

child as " suspected " apraxia and start appropriate therapy -which

would most likely benefit your child no matter what his reason for

the delays. You can easily spot oral apraxia

http://www.cherab.org/information/speechlanguage/oralapraxia.html

-but not all children with verbal apraxia have oral apraxia (but

almost all with oral apraxia have verbal apraxia) If a child also

shows soft signs

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

such as low tone or sensory integration dysfunction -there is a

better chance that he has a disorder vs. a delay of speech. Most by

the way with apraxia also have low tone somewhere in the body -even

though all of us with apraxic children described them as " just " late

talkers before we knew. Apraxic children most times blend in early,

unless they have other diagnosis. You can have apraxia that stands

alone -or apraxia in a child that has PDD or autism, or CP, or downs

or rare genetic disorders and syndromes etc. Typically however the

other disorder is diagnosed and the delay in communication is

attributed to the other diagnosis... the apraxic component is

typically not diagnosed until after the ABA or other non apraxia

therapy is used intensively and the child is still nonverbal. (or

until the parent finds our website)

There is much more on apraxia and other impairments of speech at

http://www.speechville.com and in The Late Talker book (which was co

authored by developmental pediatrician and Medical Director for NYC

Early Intervention Marilyn Agin MD, International Journalist and co

author of The LCP Solution Malcolm Nicholl, and me)

Back to developmental language disorder -here is a cut and paste

from one site about it:

Developmental Language Disorder/Delay

Children who do not develop language skills appropriately are

language delayed or disordered. There are many potential causes for

language delays/disorders in children, including hearing impairment,

cognitive impairment, autism, physical handicap that prevents the

child from interacting with their environment, and lack of

stimulation. Often, there is no identifiable cause for a language

disorder.

Children can have receptive language impairments, expressive

language impairments or both. Some children do " catch up " to their

peers but many continue to have difficulty and the gap between their

skill level and that of their peers may increase over time. As there

are multiple factors affecting outcome, it is hard to predict who

will " recover " or how great the gains will be. Language disorders

are changeable; at different stages of development children have

different demands on their language systems. Children with language

impairment in the preschool years may appear to catch up to peers by

age 5 or 6 years, but then in later years when demands change and

children begin to learn to read difficulties become apparent.

Receptive language impairments mean that a child has difficulty

understanding language. They may have a limited vocabulary. They may

not understand the meaning of word endings: that adding " s " makes a

noun plural, or " 's " indicates possession, or that an " ed " ending on

a verb means that the action is past. They may have difficulty

understanding nonverbal signals, like body language. They may not

understand sarcasm, or indirect requests (e.g., " it's cold in here "

can mean " please close the window " ).

Expressive language impairments show up in how a child speaks. They

may use only a few words in each sentence. They may leave off word

endings, or the little words like " is " and " are " . They may not know

the names of many words. They may not always use language

appropriately and appear to be rude by being too direct or blunt.

They might not consider their partner's needs, using ambiguous

referents (lots of " he " , " she " and " it " when the subject has not

been clearly identified), or changing topics abruptly.

http://home.ica.net/~fred/anch11-1.htm

Study on developmental language disorder

http://cnet.shs.arizona.edu/research/research7.html

=====

[Guest guest]

Dear Yoon Jae Ho,

I'm very happy to hear back from you and to hear about your wife's

progress. What she is experiencing now sounds very similar to my

daughter's experience - she also has diffuse SD.

>

> Now, she got acid reflux, ulcer, lose too much weight. in her ankel a

> little bit pain, a darker skin,

For the weight loss, your wife needs an excellent probiotic. The

antibiotics kill off both the infection as well as needed gut flora,

and the probiotic is needed to keep the gut in good shape. We tried

many brands and my daughter continued to lose weight. Eventually we

read that probiotics called saccharomyces are used to reverse wasting

in AIDS patients and that saccharomyces are the only probiotics which

aren't destroyed by antibiotics. We found a probiotic food containing

saccharomyces boulardii and saccharomyces cerevisiae which we get from

Grainfields Australia - their web site is http://www.agmfoods.com and

they deliver all over the world. This has helped Janene's acid reflux

and weight loss a great deal. You may also be able to find a good

probiotic in your local shops - get the kind with billions of organisms

in each dose and which you keep in the fridge, preferably with the

saccharomyces probiotic included.

Pure whey protein is very good for helping her to put on weight and it

can be made into a shake along with egg or banana. It will help her if

she eats little and often, rather than trying to eat a large meal.

Geoff in this group, who also had severe weight loss, wrote that just

one extra piece of bread a day was enough to reverse his weight loss.

The pains will come and go for a while and may move around her body.

She should continue on the low dose of prednisone until the pain

diminishes and then she can gradually taper off. My daughter's skin

continued to harden and darken for a long time after she started the

therapy. It often appears that the disease is worsening during this

period but is part of the recovery pattern. Do you have the book " The

New Arthritis Breakthrough " by Henry Scammell about Dr.

McPherson Brown's work with this therapy? In that book there is the

history of a scleroderma patient who describes in detail how at first

the therapy seemed to accelerate her disease, but eventually she

recovered completely.

It is also important that your wife drinks at least eight glasses of

water a day to flush out toxins and which may help her headaches.

> I believe the treatment ( IV treatment & Doxy. & Predsonie(?) &

> Vitamin)

> is working.

That is wonderful news. There are many people here with the same

disease as your wife and who are also recovering on this therapy.

Please email us anytime if you are worried or if you have questions.

Hope to hear back from you soon.

Chris.

[Guest guest]

Dear ,

Thank you so much for the extensive information you sent me. My son labels

things such as: balloon, ball, bird, flower,shoe, etc. He can very crudely

count from one-ten, and can identify colors and name most of them. We think he

may have an autism spectrum disorder, however he has had no official diagnosis

besides the dev. language disorder. We are starting an in-home ABA program. My

son doesn't appear to have any oral motor problems. Both receptive and

expressive language are delayed. He has made much progress (without therapy)

from when I first noticed a problem. I am trying to make sure I don't miss

anything that can be going on with him. This is why I am inquiring about

apraxia. Can you tell me what Pro-EFA is and if you think it would help my

son?? Have you heard about B12 injections helping language development? If so

do you know what dosage is needed? Thank you so much for your time and help. I

really appreciate your input.

Sincerely,

Maureen Scarboro

[ ] Re: new to group

I would recommend you read up on what a developmental language

disorder is and clarify with the professional why your child was

[Guest guest]

Never hear of B12 injections for a 2 year old. Make sure the vitamins he takes

has the B12 in it. B12 is important for memory and functioning. Does your son

take any type of reflux/gerd? Those PPI type medications take away the

absorption of B12. Don't give your son too much of the B12, too much of the b

complex vitamins can be dangerous.

Selena

[ ] new to group

Hello. My 2 year old son has been diagnosed with a 'developmental

language disorder'. I am not familiar with apraxia. Can someone

give me a brief overview of the disorder? My son " labels " things,

but does not request anything. thanks so much for any information.

Also, has anyone used B12 injections, to help with language

development?? Thanks again!!!

[Guest guest]

Hello, Seoul, Korea husband!

Sally in Little Rock, Arkansas, here. Do make sure that your wife is on a

supplement called Lactobacillus Acidophilus. It is found in yogurt and

helps the digestive system. Plus, I take Aciphex, it is a Proton Pump

Inhibitor, every day to protect my stomach and digestive system from the

antibiotics, and the Vioxx (an anti-inflammatory) for my RA (rheumatoid

arthritis) and my other medications and supplements. I take fish oil (which

you probably get in prolific amounts from your diet).

I was stationed in Korea in Song-Tan-Up at Osan Air Force Base, and know

that Koreans really eat a lot of fish. I do not and so I take the capsules

as anti-inflammatories and anti-depressants. These diseases are terrible to

cope with for both the sick one and the helper!!

I am very impressed with your English and thrilled to hear how well your

wife is doing. I still have pain, but it is manageable, so I think your

wife having pain in her ankles will slowly go away, and she should just keep

taking her antibiotics, vitamins (which are also hard on your stomach and

another reason I need the Aciphex and the Lactobacillus Acidophilus

supplement) and Prednisone, as needed. I saw other posts that addressed the

Prednisone problem.

Also, may I suggest you get a " Medical dictionary " in English/Korean? You

probably already have one.

Good luck to you both!

Sally

Re: rheumatic new to group

> >

> >

> > In a message dated 7/20/2003 10:38:57 PM Pacific Daylight Time,

> > kirhockey@... <mailto:kirhockey@...> writes:

> >

> > > hi everyone---I just joined this group--i'm looking to discuss

> > > diffuse scleroderma with anyone---especially in new england--have

> > > much to learn--thank you

> > >

> > >

> >

> > Hi & Welcome to the group :-) What's yer name? Whose yer Daddy? Ok

> Ok

> > > got carried away with the Rock and roll. I hope your feeling

> better soon I

> > have AS a cousin to scleraderma and I am in california.

> >

> > Ann Pritchard

> > 'Deep in the center of our beings

> > is an infinite wealth of love'

> > http://www.rheumatic.org/medhist.htm <http: www.rheumatic.org

> medhist.htm?

>

>

[Guest guest]

In a message dated 8/18/03 8:30:54 AM Eastern Daylight Time,

dodgergirl@... writes:

> My name is and I am new to the group. I have a 12 year old son

> (Austin) that has Asperger's Syndrome. I was wondering if anyone

> here has problems with eating? Austin has a fixation with In N Out

> Burger and basically will eat nothing else. Any suggestions? We

> have tried just about everything and his Doctors just are not doing

> anything about it.

>

Hi ,

Welcome to our group!

I would probably approach this problem depending upon what the actual problem

is. If he is just hooked on a place in an OCD kind of way, I would see a doc

about some meds for OCD behaviors. We used zoloft and Luvox in the past with

good results for this particular issue. I'm sure they (medical community)

has established various other meds since we did this.

If he is stuck on a certain food because of sensory issues or because he has

always had problems eating anything at all, I *might* consider contacting an

eating program. I know here in Ohio, they have one at one of the major

Children's hospitals. It is a behavioral program. Some people love it, some

people

do not.

It might just also be a phase and you could stick it out. I don't know how

old he is and how long it's gone on and if he doesn't eat a few other things

also. But I do have a 6 yo with a very limited diet and I know it is

frustrating to deal with it.

Roxanna

ò¿ò

It makes sense to go up the molehill

dressed for the mountain

Nan, the Wiser

[Guest guest]

In a message dated 8/18/2003 8:41:19 AM Eastern Standard Time,

kneeleee@... writes:

> My name is and I am new to the group. I have a 12 year old son

> >(Austin) that has Asperger's Syndrome. I was wondering if anyone

> >here has problems with eating? Austin has a fixation with In N Out

> >Burger and basically will eat nothing else. Any suggestions? We

> >have tried just about everything and his Doctors just are not doing

> >anything about it.

>

Welcome I have a 13y/o son with AS. My son also is a very

limited eater, but he does eat a variety. His daily foods consist of Breakfast

waffels and it has to be Vans Choco Chip and Choc Milk mixed with Hershey SYrup,

lunch is always vanilla yogurt mixed with oreo topping and dinner is spagetti

and sweet potato or cucumbers once in a while I can give him chicken nuggets.

But this is his daily diet I have learned to accept it at least he is consistant

and food shopping for him is easy lol.

[Guest guest]

In a message dated 8/18/2003 2:09:17 PM Eastern Standard Time, nanab@...

writes:

> Has anyone ever seen or heard of AS and mild MR together? My husband and

> I are both starting to wonder if there is not something else.

My understanding is AS has normal to quite gifted IQ's.

[Guest guest]

hi karen,

i know what it is like when you child get fixated on somthing. not easy to deal

with. i pretty much let him that is my son who is 19 with was just dianosed 1

year ago with as eat what he wants when i can afford it but when things are

tight he has to understand i can't afford to eat out. he seems to understand

that. and eats what i cook. go shoping with him and have him pick out somthing

he wants to eat at the store and prepare it together. that will make it fun for

him. or do what my son says. i asked him what he would suggest and he said if

you don't eat what i am surving you then don't eat at all. of corse this is a

suggestion from someone with as. maybe your son would relate to that. i don't

know. who knows. hahaha. anyway take care and hang in there. it is very hard

sometimes i know.

love,

Betty

( ) New To Group

Hi everyone,

My name is and I am new to the group. I have a 12 year old son

(Austin) that has Asperger's Syndrome. I was wondering if anyone

here has problems with eating? Austin has a fixation with In N Out

Burger and basically will eat nothing else. Any suggestions? We

have tried just about everything and his Doctors just are not doing

anything about it.

Thanks for the input.

[Guest guest]

dear elizabeth,

my son has as dianosed 1 year ago and is 19 years old. he does not do well on

test. his iq is low according to test. he was in special ed in school and they

just did not teach him anything. when he first started school he was tested and

considered mildly retarded. i knew better but i went along with the school

system because they were the experts and i was not educated. i will i had

gotten more involved in the begining but i was a single mother and had to work

long hours to care for him and my other children so i listened to the teachers.

he didn't finish school. get involved if you can and make the teachers know

that he is capable of doing his work. i don't think the test are completely

accureate. work with him and educate the teachers on as. they may not

understand his limitations in this reguard and think it is because he can't do

somthing when probably he can with a lot of direction. they learn diferently.

they see things completely diferently. hang in there. you are so special. it

is very hard. i know. write me back and let me know how things turn out.

sharing your concern,

Betty

( ) New To Group

Hello all,

My name is and live in Illinois. I am just recently married

(March) with three children. I am a foster parent, who later adopted my 3

kids as

a single parent. My husband also adopted my kids after we married......My

family is now complete.

(age 10) has Asperger's Syndrome. He came to me at age 2 1/2 and was

diagnosed with Sever Autism. 10 months later, I called the doctors back to

tell them I thought he was misdiagnosed. To make a long story short, the docs

said I was crazy, and a diagnosis of severe autism NEVER changes. Eventually

they agreed to test him again (almost a year later). At that time, he was

making eye contact, was now speaking, showing some affection (whereas before

we

were like furniture to him), he has come a long way in many areas, but was

still spinning EVERYTHING, including himself, ALL THE TIME!!! Including the

pictures on my walls. Then by the age of 7, the official diagnosis of

Asperger's

was given. The doctors had eventually realized, that in the beginning we were

not actually dealing so much with autism, as we were a severely abused child

who had turned into his own world. That is why there was not much

(developmentally, etc) with in the beginning. I do have one question,

however.

is very high functioning as far as the Autism is concerned (therefore,

the dx. of AS), however, he is having more and more difficulty keeping up

academically in school. His IQ tests typically show him falling below average

range. Has anyone ever seen or heard of AS and mild MR together? My husband

and

I are both starting to wonder if there is not something else. My friend has

an AS daughter that is the same age as . There are NUMEROUS

similarities

between the two, yet in many ways, they are also different. She loves

puzzles, detests them. She loves to draw, and he cringes when asked to

do

anything artsy, and the list goes on.....

will be 3 years old on the 26th of this month. He's been diagnosed

with PDD-NOS and SID. He is quite the ACTIVE child, and a lot of his

behaviors

remind me of an AS child. is also on the oposite end of the IQ tests,

and tends to be highly intelligent, even at almost age 3. He loves puzzles,

loves to figure out what makes things " work " , and has a fascination with

trains, planes, and ambulances (especially trains!)

Jazmine just turned 6 years old and is as " normal " as they come. It seems in

the last year, she has become the " big " sister. imitates everything

she does, even if it's not " appropriate behavior " for a 10 year old, which can

become rather frustrating at times. Has anyone else ran into this type of

behavior?

Well, this is getting rather lengthy. I look forward to being part of this

group.

[Guest guest]

Autism and MR, yes. AS and MR, not that I know of. My ds is HFA w/ an

IQ of 122. He does not like puzzles, drawing, etc.

Maybe he tests poorly for a different reason? Does he have high

anxiety? Maybe a learning disability along w/ AS?

I hope you figure it out soon. Best Wishes, a

> > Has anyone ever seen or heard of AS and mild MR together? My

husband and

> > I are both starting to wonder if there is not something else.

>

> My understanding is AS has normal to quite gifted IQ's.

>

>

>

[Guest guest]

as. they may not understand his limitations in this reguard and

think it is because he can't do somthing when probably he can with a

lot of direction. they learn diferently. they see things completely

diferently. hang in there. you are so special. it is very hard. i

know. write me back and let me know how things turn out.

>

> sharing your concern,

> Betty

Betty,

That was so nicely put! And so true too!

Roxanna

[Guest guest]

Hi-- did you catch some of the posts about the recent news release

that in autistics, mercury is often in the very low/below normal

range on a hair test--because they can't excrete it well. If you

don't have that, email me and I'll send it to you, OK?

maryandphilip@...

The other metals you mentioned could potentially cause problems, too,

so I think you are in the right place by looking into chelation

further. Check the Files on the board for how to post a hair test to

the board and ask for some help analyzing it. Was it a DDI hair test?

W

> Hi my name is Jane and I have a 4 year old son with autism

[Guest guest]

Jane,

Welcome to the list. As another mentioned, if it's a DDI hair analysis apply

the counting rules or post it to the list so others can assist with this.

Please try to indentify and eliminate his exposure to antimony & arsenic. If he

has no mercury amalgam dental fillings, consider chelation with ALA (available

at HFS) (use Andy Cutler's protocol) since it chelates both arsenic and any

mercury he may have. SAMe is expensive but available at Health Food Stores and

helps get rid of the antimony.

S

>

Hi my name is Jane and I have a 4 year old son with autism.  I <BR>

know he has a duplication of his 15th chromosome that is found in <BR>

some children with autism but I believe in my heart that the <BR>

vaccinations made the symptoms of autism more severe because his <BR>

system was different and could not handle the overload of mercury and <BR>

whatever else they put in those things.  My question is should I try <BR>

dmsa with him even though a hair analysis showed mercury and lead to <BR>

be in normal range.  The only element out of range was antimony, <BR>

arsenic, and tin.  I know this can't be good either but I have just <BR>

recently started a program with him called chembalance that balances <BR>

the bodies ph system therefore I am assuming it would help the body <BR>

throw off these elements.  I really feel Lane needs more than this <BR>

alone.  He is hyper alot lately and less focused.  I am doing a <BR>

neurodevelopmental program with him that is bringing positive results <BR>

I just wonder if there was something else I could be doing to help <BR>

balance his system so it is not so sensitive.  He is running on <BR>

sensory overload and I am working on that with the ND but Lane is a <BR>

tough nut to crack.  Getting him to be calm is half the battle with <BR>

Lane.  Any advice would be great.  <BR>

<BR>

=======================================================<BR>