Intro

August 24, 2000

Hi ,

Thanks for the welcome. I had posted quite a bit last year, but haven't had

time since Summer began. Our son had an MRI at age 10-months, which showed ACC.

A neurologist ordered the test.

Re: Intro

, welcome aboard! How did you know that your son had a congenital ACC?

Who tested for that?

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

August 24, 2000

Kathy, is it possible to have my DAN nutritionist do the protocol if I

show him Goldberg's list? He is very open-minded, but I am not to sure if he

is updated with DrG latest treatments. I really hope that the Northern N. Y

..clinic will open this year- the thought of that makes me feel so much more

alive! Thanks again!

August 25, 2000

You have to have an MD or a Nurse Practitioner or P.A. working with a

Physician. Someone has to interpret the tests which a nutritionist could not

do either by training or legally and then the medications have to be ordered

based upon the test results, history, and physical. Since the child is

constantly being bombarded by triggers to the immune system and is growing

the medication schedule has to be evaluated on a weekly basis. Lab tests have

to be done periodically. This is a medical protocol that is no different from

the protocol for TB or Diabetes or any other disease. Kathy R

February 2, 2001

Hi ,

Sensory Integration is a " soft " neurological sign. If I remember correctly, I

believe according to the book " THE OUT OF SYNC CHILD " that anyone can have

sensory integration disorder, even those with " no other issues, " however it is

very common in children with autism, and other autistic spectrum neurological

disorders such as PDD. It is now known by many to also be common in children

with apraxia.

If you have not yet taken your child to a qualified SLP I suggest that would be

an important part of finding out if your child has apraxia. You need to locate

a Speech Language Pathologist who has experience and training in working with

apraxic children since not all SLPs are knowledgeable about oral motor disorders

like apraxia. You can contact the American Speech Hearing Association (ASHA)

which there are links for at our website http://www.apraxia.cc

I also suggest that you should seek the diagnosis of a Developmental

Pediatrician and/or Neurologist that is experienced and knowledgeable in

diagnosing and treating condition like apraxia, autism, and other disorders.

I'm not saying this is the case with your child, but it is not unheard of for

apraxic children to be MIS diagnosed as PDD by professionals who are not

knowledgeable. You need to seek out those that are knowledgeable and respected

in both the medical and speech field.

If in fact your child is PDD, I've heard wonderful things about ABA therapy.

The only criticism I've heard from speech professionals is that there is not

enough ST (speech therapy) or OT (occupational therapy) to address the apraxia.

Even though the medical community is just beginning to suspect that many

autistic children have oral and verbal apraxia, this has been accepted as true

by many speech professionals who specialized in this area for awhile.

I'm a parent like you, not a professional, and I do hope that the professionals

on this list will be able to direct you better than I. It may help for you to

say what state or country you are from?

Hope that helps!

Best,

February 2, 2001

Hi and Welcome!

It is agreed that oral apraxia can be diagnosed as young as 18 months

old, but like you, when my son was first diagnosed I read online at another

apraxia website that a child could not be positively diagnosed with verbal

apraxia until the age of three. Dr. Marilyn Agin, who is a medical expert in

apraxia and autism, and the key medical person behind the CHERAB Foundation,

believes that verbal apraxia can be diagnosed sooner than the age of three. She

can more specifically address what she looks for.

In addition, there are other " soft " neurological signs to look for

when you have a child with apraxia: specifically hypotonia and

sensory integration disorders. Many apraxic children have either one

or both of these signs as well, and these " soft " signs are not

always " picked up " by the average parent or pediatrician. This is

one of the reasons why we say to seek out a knowledgeable

developmental pediatrician and/or neurologist. It's shocking that

not all apraxia websites stress the importance of seeking medical

evaluations for a child with suspected apraxia-but that's why we are

here!

Whether you know 100% or not if your child has apraxia, it is

believed by the experts that if apraxia is suspected, that

appropriate therapy should begin as early as possible.

You can find all the early warning signs of verbal or oral apraxia at

our website at http://www.apraxia.cc Please check our index. Hope

that helps!

Best,

February 3, 2001

Could you please explain what hypotonia and sensory integration

disorders are? Have you ever heard of a link between

seizures/epilepsy and apraxia? It seems as if somehow a child that

has had a seizure and has been diagnosed w/apraxia that they are

somehow linked and not just random, separate conditions. Any

comments?

February 3, 2001

lisa ,

we have seen a ped developmental specialist in oct last year and we have a return visit this week..some one from the list gave me the name of a slp here in va that deals alot with apraxia and i will be asking for a referal...

it concerns me to start the aba without a proper dx for the apraxia since she will have some things with held from her as to prompt her to speek...what if she cant!

when she was dx pdd i agred with the dx because last june she showed all the signs of autism although they were mild...she has made so much progress at this point i honestly dont know the correct answer..she still has sensory issues as well as social and of course speech( at 31 months her age level is 12 mos )...i do see apraxia in her..they way she looks so strained to make words( she says 6..baby,ball,book,bird,bye and whe for where) also in the way her pitch changes ie baaaaaBEE...she bables alot with mostly vowel sounds..all of these i understand are typical of apraxia...

thanks for your help and advice as i feel lost!

wendy

HAPPY VALENTINES DAY

May 3, 2002

Welcome to the group, Cecilia! Sorry about your RA diagnosis, and I hope

you can feel well enough to spend more time with us soon.

Looking forward to hearing more from you,

[ ] Intro

> Hello,

>

> My name is Cecilia. I thought I would say hello because I did join a

> few months ago and it is about time I introduced myself.

>

> I have RA which was offically diagnosed about 4 years ago although I

> think I had it a few years before that but my doctors just didn't get

> it.

>

> I will keep this short because sitting at the computer is not

> comfortable for me ar times.

May 3, 2002

Welcome, Cecelia. I hope you will avail yourelf of the wonderful

support and friendships found here. I know sometimes keyboarding is

rough...but as you can, this is a wonderful place to come & share.

Hugs of Hope...

Tess

January 19, 2005

Welcome to the club, Donna. I too was an honor student and now am reduced

to a quivering, useless blob of protoplasm who has to leave a trail of bread

crumbs to find my way back from the mailbox. Methinks the human species has

gone way overboard playing around with chemicals and many inventions in an

attempt to improve our condition only to have let a monster out of its cage.

I am seriously toying with the idea of moving into a deep rainforest

somewhere and take my chances with the coral snakes and devilish assorted

predators just for the chance of breathing decent air and sipping

unpolluted, non-chemically poisoned water.

Best wishes to you..............Betsy

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

From: " D J " <djnova50@...>

< >

Sent: Tuesday, January 18, 2005 3:01 PM

Subject: [] Intro

><snip>

> To think that at one time i was an honor student.

>

> Donna

>

January 15, 2007

Hi ,

Welcome to our group! Amazing faith and strength you must have to be a single Mom with 3 beautiful children with autism. I hope you will find the support and friendship you need in our group.

Give me a call if you need anything.

Yours,

n

216-310-9692

In a message dated 1/14/07 9:19:35 PM Eastern Standard Time, DillardRN@... writes:

I'd like to introduce myself...My name is and I plan on moving my children to Cuyahoga County very soon...I am the mother to 3 beautiful children, all who have autism...I just recently became a single mom too...life is chaotic and hard...I have family in Cuyahoga county, thus the reason for the move...my children have been involved in ABA, ST, OT, PT, horse riding therapy, pool therapy, and music therapy...we tried the GFCF diet with no change...my children are incredibly social and loving...i am truly blessed to have them in my life...I look forward to meeting you and learning much from all of you...

--mom to Hayden (6), Reagan (5), Savannah (3.5)

January 15, 2007

- Welcome to Cuyahoga County and to the group! Let us know if

you need to find service providers, etc, and I hope you have an

uneventful move. - mom to Bobby 8, Ian 6, Yoli 3

>

> I'd like to introduce myself...My name is and I plan on moving

my children to Cuyahoga County very soon...I am the mother to 3

beautiful children, all who have autism...I just recently became a

single mom too...life is chaotic and hard...I have family in Cuyahoga

county, thus the reason for the move...my children have been involved

in ABA, ST, OT, PT, horse riding therapy, pool therapy, and music

therapy...we tried the GFCF diet with no change...my children are

incredibly social and loving...i am truly blessed to have them in my

life...I look forward to meeting you and learning much from all of

you...

>

> --mom to Hayden (6), Reagan (5), Savannah (3.5)

>

January 15, 2007