Amber

[Guest guest]

Amber and ,

When you say your children talk with their mouths closed, are they making

noises? My

daughter (2.6) " talks " on and on, but it's mostly grunts and guttural sounds.

She

" tells " long stories with lots of voice inflections, facial expression and

gestures.

Her conversation is peppered with some of the words she does know. (She has

20-30 or

so words, some of which sound the same but mean something different to her. Most

are

only intelligible to me.)

[Guest guest]

Hi Amber, my son was diagnosed with severe verbal apraxia last

december, he used to grunt in the back of his throat and could say ma and no

with prompting. He pointed at everything. Today he has maybe a couple hundred

words and can combine 6 and 8 word sentences. His speech is not crystal clear

but it is improving. will be four in feb. Anyway hang in there and good

luck. Kate

[Guest guest]

That sounds like Hunter but he rarely uses any words at all. It's

usually the grunts and humming with the facial expressions, hand

gestures, and voice inflections.

A couple weeks ago I was putting his shoes on and he just said " SHOES! "

I was so tickled. But that doesn't happen a whole lot.

~~ Amber ~~

>Amber and ,

>When you say your children talk with their mouths closed, are they making

>noises? My

>daughter (2.6) " talks " on and on, but it's mostly grunts and guttural

>sounds. She

> " tells " long stories with lots of voice inflections, facial expression and

>gestures.

>Her conversation is peppered with some of the words she does know. (She

>has 20-30 or

>so words, some of which sound the same but mean something different to

>her. Most are

>only intelligible to me.)

[Guest guest]

Dear Patti,

Thank you for your encouragement! The care of the folks here is often

what gets me through the rough spots. I print a lot of posts out so I can

remember that THIS is reality. THERE IS HOPE. The drs who don't see

a caseload of autistic kids just haven't seen 's kids or 's kids or

Amber's kids or Neva's kids...or so many others who have made such unbelievable

progress...

Courage, hope and strength to you and your family, and may God bless you as

you continue the quest to heal your son...

, Mom to (5, autistic) and (6, NT)

[ ] Amber

You probably are not familiar with me but I just read your story and

it made me so angry. I think everyone on any of theese autism related

boards understands what you are going through. I also along with my

husband had to self diagnose,self impliment the diet, self impliment

supps, self impliment enzymes and so on. We to long for help from

somone professional who knew more than us only to be dissapointed and

frustrated. It is scary to try things unproven on our children but

just know we are all in this. We do know more than most doctors and

we are making a difference. Your son is sooooo lucky he has you and

there are so many parents I have run into who just accept the autism

diagnosis and do nothing else to help their children and when I try to

tell them they can do more they just shrug. You ARE making a

difference! A good friend of mine has an 8 year old with pdd and can't

believe the information we are learning and sharing since her

diagnosis . Her dr. admitted that " you MOMs know more than us " .

How

about that? What does that tell yu? Try to keep your chin up and

know

we all care. Patti

[Guest guest]

Hi Amber

I am not sure if we have ever spoken before or how new you are to the

group....but I did want to get to you and let you know that what you are going

thru is tough and it SUCKS....No doubt about it....as many here will let you

know....

It is my son who is now 19 and was diagnosed at 9...he has a few(more than his

share) of auto-immune diseases...he has AIH and PSC...which is another liver

disease...it effects the bile ducts....he also has Crohns Disease, Rhuematoid

Arthritis and Vasculitis....

He takes alot of meds...about 25 a day and goes to the hosp once a month for a

treatment which takes 8 hours...which he also has to be pretreated for because

he goes into shock ....but with out the treatment he gets really sick...which is

what happened last yr...and he ended up in the hosp from Nov thru March....in

and out but mostly in and never in school...and this was his senior yr....his

entire 4 yrs in HS were very tough..either in the hosp or home to sick to be

doing anything....was home schooled alot...tough going back and being known as

the sick kid...He used to be a soccer player ...a goalie...tells you alot about

him...kind of crazy...and that is where all his friends were...well you

know...with teens and almost everywhere...out of sight out of mind....

and the other tough thing is that as you know alot of the time you will look

just fine and people just don't take you seriously that you are sick and at

times really sick...I would have moms ask about him when he would be out of

school and they would answer back that there kid has the flu and is soooo sick

so she knows what we are going thru.....I DON'T THINK SO.....

He spent most of his teen yrs home with me and my mom who was living with

us...Now talk about a bad situation...I am surprised he can tolerate to look at

me...LOL

His dream to be a proffesional soccer player went out the window...but then he

seriously wanted to be a doctor...Ped GI..to help kids like himself...wanted to

go to Northeastern ...looked into all his options and where he wanted to do his

internship etc....Then his senior yr being so tough and not even being able to

keep up with the work he didn't get any grades until it was to late to get into

a college....Geez...just kick him again...So he decided to go to the county

college here and live home...which is what he is doing....

Now he is not sure what he is going to do...feels that 16 yr of college and

internship may just not be in his future....so he is kind of really just hanging

out there...trying to figure out what he wants to do with himself...For someone

who was so goal oriented this is tough and I see him being very restless....

Amber I know it is really tough to be out of the home and then have to move

back....you are your own person now...and even though you are there you need to

lead your own life....I try not to smother Tyler...but let me tell you it is

tough...

I am sorry that you are having such a tough time...and I hope that we will talk

again..also sorry that this took so long to get to you...I have a hard time

keeping up....

Luanne Ty's mom

[Guest guest]

Luanne:

My heart and prayers are with you and your son. He has gone through so much

for someone his age. Now to be kicked while down again because of grades in

high school that could not be helped due to illness. I really admire you

and your mom for what you did for him while raising him. I hope he gets his

dreams on what he would like to do with his life.

Glo

>From: BBNLU@...

>Reply-

>< >

>Subject: Re: [ ] Amber

>Date: Tue, 29 Jan 2002 14:35:35 EST

>

>Hi Amber

>

>I am not sure if we have ever spoken before or how new you are to the

>group....but I did want to get to you and let you know that what you are

>going thru is tough and it SUCKS....No doubt about it....as many here will

>let you know....

>

>It is my son who is now 19 and was diagnosed at 9...he has a few(more than

>his share) of auto-immune diseases...he has AIH and PSC...which is another

>liver disease...it effects the bile ducts....he also has Crohns Disease,

>Rhuematoid Arthritis and Vasculitis....

>He takes alot of meds...about 25 a day and goes to the hosp once a month

>for a treatment which takes 8 hours...which he also has to be pretreated

>for because he goes into shock ....but with out the treatment he gets

>really sick...which is what happened last yr...and he ended up in the hosp

>from Nov thru March....in and out but mostly in and never in school...and

>this was his senior yr....his entire 4 yrs in HS were very tough..either in

>the hosp or home to sick to be doing anything....was home schooled

>alot...tough going back and being known as the sick kid...He used to be a

>soccer player ...a goalie...tells you alot about him...kind of crazy...and

>that is where all his friends were...well you know...with teens and almost

>everywhere...out of sight out of mind....

>and the other tough thing is that as you know alot of the time you will

>look just fine and people just don't take you seriously that you are sick

>and at times really sick...I would have moms ask about him when he would be

>out of school and they would answer back that there kid has the flu and is

>soooo sick so she knows what we are going thru.....I DON'T THINK SO.....

>

>He spent most of his teen yrs home with me and my mom who was living with

>us...Now talk about a bad situation...I am surprised he can tolerate to

>look at me...LOL

>His dream to be a proffesional soccer player went out the window...but then

>he seriously wanted to be a doctor...Ped GI..to help kids like

>himself...wanted to go to Northeastern ...looked into all his options and

>where he wanted to do his internship etc....Then his senior yr being so

>tough and not even being able to keep up with the work he didn't get any

>grades until it was to late to get into a college....Geez...just kick him

>again...So he decided to go to the county college here and live

>home...which is what he is doing....

>Now he is not sure what he is going to do...feels that 16 yr of college and

>internship may just not be in his future....so he is kind of really just

>hanging out there...trying to figure out what he wants to do with

>himself...For someone who was so goal oriented this is tough and I see him

>being very restless....

>

>

>Amber I know it is really tough to be out of the home and then have to move

>back....you are your own person now...and even though you are there you

>need to lead your own life....I try not to smother Tyler...but let me tell

>you it is tough...

>

>I am sorry that you are having such a tough time...and I hope that we will

>talk again..also sorry that this took so long to get to you...I have a hard

>time keeping up....

>

>Luanne Ty's mom

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

I totally agree...WooHoo to meds...hopefully they will have a plan and get you going so that you will be feeling better and more enpowered....

WOOHOO....

Let us know how you do...

Luanne Ty's mom

[Guest guest]

Dear Amber

Do you have Palmer's book? If not you can get

it from the library. I think you live in Wellington

and I know that the Invercargill library has a copy

which they can probabl;y obtain for you. One day I

will get my own copy but meantime I periodically

borrow the library copy.

I am type 1 - but I probably wouldn't have known this

if I hadn't had a copy of my original biopsy report.

Now I get copies of almost everything including blood

tests. Keep in touch Love Caroline (NZ)

--- flatcat9@... wrote:

> In a message dated 2/20/02 11:47:53 PM Pacific

> Standard Time,

> karjah@... writes:

>

>

> > hi guys =)

> > just short an sweet,what do we know about 'types'

> of auto immune hepatitis??

> > blessings

> >

>

> Amber, here's some information from Palmer's

> book. My doctor has

> never mentioned types to me. One book I've read (I

> don't have it here) says

> some doctors feel that determining typology is a

> very useful tool in

> treatment in prognosis, while others don't think it

> matters much. Below, I'm

> paraphrasing and summarizing, for brevity.

>

> According to Palmer, there are two established

> categories of AIH, type I and

> II, and some believe there is a third. The

> categories are determined by the

> type of autoantibody present in the blood.

> Type I is the most common in the U.S.; it's

> characterized by the presence of

> ANA and SMA antibodies.

> Type II usually has no ANA or SMA but does have LKM

> Ab antibody present. LKM

> Ab is present primarily in AIH young women and

> children. About 4% of people

> with AIH in the US have Type II. It moves

> relatively rapidly toward

> cirrhosis if untreated.

> Type III (if it exists) is known as

> autantibody-negative AIH. People with

> this type don't show antibodies but have AIH

> characteristics. Progress is

> similar to Type I.

> Harper

>

__________________________________________________

[Guest guest]

My girls both potty trained at 2. One has mild apraxia, and the

other has severe apraxia. My son was late potty training, and

is " normal " .

> My name is , and my daughter was diagnosed with verbal

apraxia about 8

> months ago. WE knew there was a problem, and had her in therapy

from the

> time she was two. is almost four now, and doing much

better, starting

> to put more and more words together, and also mixing up the order

of her

> sentences. I too, am considering the Proefa, and wonder fi there

are any side

> effects or risks taking it. I have read wonderful stories and we

would so

> happy if this would be the miracle for us. My daughter will be

starting her

> second year of preschool in the fall, and I would love for her

to be able

> to interact with the kids more. Most of the children did not

bother with her

> because when school started she was unable speak at all...

>

> ANother question i have. Does anyone know if late potty training

can be

> related to the apraxia....We have been working on this since she

was 19

> months old, and she does go but is not consistent..I am wondering

if possibly

> she is unable to hold it. DOes any have this problem.

>

>

>

>

>

>

[Guest guest]

Hello

My son was 4 in April. One year ago at this time he had maybe 10 to 15

approximations of words. Things like i for hi or i i for night, night. The

only word anyone could understand was maaa for mother. started st just

before turning 3, at that time his slp mentioned that potty training might be a

problem. I gave it several tries last summer after he had turned 3 & got no

where. Luckily in August my then 5 year old started school & I tried again with

success this time. We did just big boy pants, only pull ups at night. He

needed to really feel wet & know what had happened. It worked in just a week &

a half!!! She mentioned that sometimes it is a motor planning thing that even

affects yes potty training???

But fast forward to present day & is doing great. People at church will

come up to me that occasionally work in his class & are amazed that it is the

same child. We started Pro EFA in the fall & in less than a month we noticed

more babbling & then new sounds. He now talks in 4 word sentences regularly &

is understood about 70% - 75% of the time. When he began to speak he also began

to let loose of me a bit. We had had terrible separation anxiety before that.

We have had the best slp for over a year now. She calls her work with boot

camp style speech therapy, she works him to death. But I can't imagine how he

would be if still like he was a year ago. Or how I would be, over the edge for

sure!! We are currently taking a break from Pro EFA & showing no regression. I

plan to start again in a few weeks hoping to get another surge of speech. Will

let all know the outcome. Best wishes....

Tammy I. in FL mom to 4, 6, 17, 21

[ ] amber

My name is , and my daughter was diagnosed with verbal apraxia about 8

months ago. WE knew there was a problem, and had her in therapy from the

time she was two. is almost four now, and doing much better, starting

to put more and more words together, and also mixing up the order of her

sentences. I too, am considering the Proefa, and wonder fi there are any side

effects or risks taking it. I have read wonderful stories and we would so

happy if this would be the miracle for us. My daughter will be starting her

second year of preschool in the fall, and I would love for her to be able

to interact with the kids more. Most of the children did not bother with her

because when school started she was unable speak at all...

ANother question i have. Does anyone know if late potty training can be

related to the apraxia....We have been working on this since she was 19

months old, and she does go but is not consistent..I am wondering if possibly

she is unable to hold it. DOes any have this problem.

[Guest guest]

I just wanted to let you know that I talked to my pediatrician today and also

a pediatric neurologist and they both said that they have earned of improvements

with PRO-EFA with apraxia and that even if it didnt work there wouldnt be any

side effects. So I guess all we can do is try and pray that it helps

> I too, am considering the Proefa, and wonder fi there

are any side

> effects or risks taking it. I have read wonderful stories and we

would so

> happy if this would be the miracle for us.

[Guest guest]

Hi Amber and Rashelle,

I want to say that I understand about being busy and wanting to cry! Been

there, still there! :-)

I also want to say that Rashelle is right, the breaths are just what you

should do. I know for myself, when I'm at my wits ends, I have to take some

time out just for me. The time out I take is to do my breaths! It calms

and sooths me and I can face life again. I get so busy being at home with

my kids, home schooling and building a business out of my home, so I can

continue to stay at home that I sometimes forget to be nice to me! I also

wonder how in the world I ever had time to work outside of the home!!! :-)

Take a minute and do just three breaths and if you are like me, you'll be

settled right down and continue on to ten. :-)

I hope both of you have a blessed day! Rashelle when you find a spare

minute, give me a call. I miss you!!! Nothing important, just love to

talk to you and giggle a while with you my friend. :-) Life continues to

be busy at our home.

Karma

I build a home based business by shopping with http://www.melaleuca.com

You can too. It's a shopping decision.

Set up an appointment to learn more

http://www.i-want-to-be-a-work-at-home-mom.com/karma

Join Our Team - http://www.WeAreMomsForLife.com

FREE Organizer program

http://www.workfromthehearth.com/default.asp?RefMemID=483

Want to join Honor List for February?

> Here are the names I have so far (starts tomorrow!!) If I've left

anyone

out or if you would like to tell me today to add you, I will.

>

> Honor List for February

>

> Darlene

> Kacey

> C.

> Liz

> Wanda

> Connie

> Helene

>

>

> Thanks,

> Darlene

>

>

[Guest guest]

> Hi everyone, i am sorry to do this, but to all those who email me privately

Chat/readings etc) sorry joanne

my email address has changed again its now daniel@...

sorrys, this is only for a couple of weeks when i am changing isp, freeserve

messed up.

hope everyones ok. I am still reading the posts but am still not really well

enough to reply.

love to everyone

anita

ps could someone reply to this email so i know its working. thanks

>

>

__________________________________________________________________________

Freeserve AnyTime - Go online whenever you want for just £6.99 a month for

your first 3 months, that's HALF PRICE! And then it's just £13.99 a month

after that.

For more information visit http://www.freeserve.com/time/ or call free on

0800 970 8890

[Guest guest]

Anita....it is so GOOd to hear from you... I was getting a little

worried.... hope you ar alright. Plase contact us whenever you

can....as you may be able to tell I have received your message 5 by 5

(whatever that means... I heard it on TV)

love jerry

[Guest guest]

> aggressive with treatment for your kids), but my question is, Is all

> this medical intervention proven to make my child well as much as

> the other traditional therapies (ABA, floortime, etc.)? And

> by " proven " I mean proven to you parents, not the traditional

> medical professionals, as I already know their answer.

> So what's the theory, correct the physical problems and the mind

> will follow?

I did ABA and other things for my son and he basically made almost no

improvement. Once I began biomedical, he made amazing improvement

with his education.

My son was a very low functioning Kanner's autism child. Now he no

longer qualifies as autistic, altho still language delayed. Recently

however, the language is really exploding also.

For my son, the education was almost useless until I addressed his

metals issues. For other kids, might be different, but this is what I

have seen with my son.

> Once again forgive my skepticism, my son and your kids are worth it,

> for sure, I just really need to know the rationale behind this kind

> of intensive and invasive treatment.

What I do with my son for biomedical, I do not consider " invasive " .

What are you considering for your child?

Dana

[Guest guest]

Thanks Darlene!

>From: <tw1853@...>

>Reply-LifeLift

><LifeLift >

>Subject: Amber

>Date: Mon, 30 Jun 2003 12:43:32 -0400

>

>Sure - welcome back!

>

>Smiles,

>Darlene

>

> >

> > From: " Amber Barney " <prpldinochic@...>

> > Date: 2003/06/30 Mon PM 12:03:06 EDT

> > LifeLift

> > Subject: Re: July Honor List So Far

> >

> >

> > Hi girls the time has come!!!! I need and I mean need to get back on the

> > honor list!!!! So please ad me.

> >

> > thanks so much I miss you all so much!!!!!

> > Amber

> >

>

>

>

>What can changing the way you breathe do for you? Everything!

>See why tens of thousands agree, Life Lift is the best!

>http://www.oxygenzoo.com

>

>

[Guest guest]

Thanks Darlene,

I thought I was sending this to the group.

Thank you so much!!!

Re: Honor List for July 1

> Anne,

>

> With each life lift breath I take I pray that Anne will be healthy and

content, I pray that your career is fulfilling and that you work the hours

that suite your life the best, I pray that you feel safe and confident when

you drive.

>

> Love and Blessings

> Amber

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

[Guest guest]

Go for two here, but I've got it this time.

Dear Amber,

Yes, you are nearly voicing my exact words. My body seems to work like that, too. We keep "fixing" things but slowly and surely the fixes have to happen more often. It is diffucult to keep up with your self and your feelings. This week it's ascites in the lining of my lung so I only have about 1/3 of my right lung breathing. This is the third time I've had this but it sure slows me down. I can't get it drained until next Thursday for various reasons so the couch and I will be spending a great deal of time joing together for the next week.

About a month ago it was ammonia build up and encephalapathy. So of course that means more laxativfe and anything I eat goes right through me - such a joy. I told my friends if they give me anymore I having my family remodel the bathroom to include a recliner, a TV and a cushy commode!

We were asked in a teacher's course to desribe our style of teaching and living. I have for years said that some people are roads and highways and know exactly their destinations and when they'll get there. I tend to follow the river because I know where it ends but the river has many unique qualities. The water can be deep or shallow, fast or slow, twisty or straight and you never know what you might discover on the way. I guess my body approached this illness the same way spending time in still, deep waters getting ready for some rapids that may be coming but ultimately, with my stage of AIH I know I have a chance to reach the end and then find the road I'm supposed to take for awhile.

I hope, Amber, that I didn't just confuse the h*** out of you!!!! I guess the short message is we care about you and we understand how you're feeling. Now, go sprinkle those beans with magic fairy dust :)

Take care,

Amy

[Guest guest]

Here is a picture of Amber I took the other day. I will send another one . Carol P Carol P. AIM iammamapie Giga iammamapie

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

[Guest guest]

Carol Payne <isapayne@...> wrote: These pictures were taken on vacation. Amber & Katelynn got matching outfits. And then Amber wanted a picture taken with the dolphin Carol P. Carol P. AIM iammamapie Giga iammamapie

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.

[Guest guest]

Oh my gosh she has GROWN so much!!! What a lovely tanned little beauty she is too. What were they all dressed up for? Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----From: Carol P. <iammamapie@...> Sent: Friday, August 17, 2007 9:05:49 AMSubject: Fwd: Amber

Here is a picture of Amber I took the other day. I will send another one . Carol P Carol P. AIM iammamapie Giga iammamapie Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

[Guest guest]

Great pics,Carol!! Both girls are beautiful..looks like a fun time..Amber is quite a ham,huh? Take care, from western Missouri Mom to ,22(DS)~Kasey,15~,12~"Carol P." <iammamapie@...> wrote: Carol Payne <isapaynecomcast (DOT) net> wrote: These pictures were taken on vacation. Amber & Katelynn got matching outfits. And then Amber wanted a picture taken with the dolphin Carol P. Carol P. AIM iammamapie Giga iammamapie Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.

[Guest guest]

We went to mexico and they bought matching outfits. That was just an outing. We Stayed at South Padre. Hubby went deep see fishing. We always have to buy 2 of everything. LOL Her older sister . She lives in Colorado . They came down last week. She commented on how much Amber had changed in just 6 months. With getting taller and her vocab. which has increased alot !! Carol P.Carol in IL <ps1272000@...> wrote: Oh my gosh she has GROWN so much!!! What a lovely tanned little beauty she is too. What were they all dressed up for? Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic Fwd: Amber Here is a picture of Amber I took the other day. I will send another one . Carol P Carol P. AIM iammamapie Giga iammamapie Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Moody friends. Drama queens. Your life? Nope! - their life, your story.Play Sims Stories at Games. Carol P. AIM iammamapie Giga iammamapie

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

What a beauty! Thanks for sharing.

Patty

[Guest guest]

I am taking 100 iu from cod liver oil, and another 9000 iu from

vitamin D3. My blood levels are only coming up very slowly as I have

absorption problems (have only recently gotton up to a level of 43 -

still far below the level of protection I need). Mainly all I've

noticed so far is that I don't get sick all the time.

Of course many of the benefits of vitamin D you will never see; like

NOT getting cancer.

Amber

=============

>

> Amber,

> You are taking 10,000 units of Vitamin D daily?

> Are you taking Colicalciferol?

>

> How do you feel...I mean what changes have you detected in your

body? Virginia

>

> -------------- Original message --------------

> From: " amberblzn " <amberblzn@...>

> Sorry, I cut off the bottom of my post before, so am reposting so

it

> will all be together. Here it is in full:

>

> I was just reading on Dr. Mark Hyman's site that 400 to 600 iu

> vitamin D is just enough to prevent rickets. There is LOTS of

> information there.

>

> My naturopath has me on 10,000 iu (because of low blood levels),

and

> my naturopath says that doctors are safely using up to 25,000 iu

> units per day *in persons with low blood levels*

>

> Of course these higher levels, including the 10,000 I am taking,

> should only be taken under the care of a health professional, and

> repeated blood tests at least every 2 to 3 months.

>

> Amber

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