Introduction

[Guest guest]

Hi , you are SO right. They NEED to be able to talk! I don't have

to worry about any therapy that my son needs b/c he has a medical

assisstance card from the state of PA. I don't know where you are from, but

check into something like that. No insurance worries at all! Good luck to

!! I have also started on ProEFA, the fish oil supplement.

It's supposed to work WONDERS on apraxia kids. This is our second week on

it and I DO see improvement already.

> My name is and I am Mom to two boys, ( 2 and a half) and

> (11 months). is developmentally delayed in many areas and

> attends both physical and speech therapy. He has absolutely no

vocabulary.

> Not even " mama " or " dada " and his babbling just doesn't sound the same as

> that of his 11 month old brother. His speech therapist says that he has

some

> characteristics of apraxia so I am just now trying to find all of the

> information that I can regarding apraxia. I am hoping to learn from all

of

> you since my head is swimming with questions!

>

> Right now it is time for me to go back to the insurance company and BEG

for a

> continuation of his speech therapy coverage. They only tend to approve

8-12

> weeks at a time. I was SHOCKED to see how LITTLE speech benefit our

> insurance company allows in a " lifetime " but they'll approve his physical

> therapy for years and years...I keep thinking that he can function in a

> normal society if he walks differently than others, but he can't function

in

> a normal society if he can't talk!

>

> Thanks for listening!

>

>

>

>

[Guest guest]

,

Just curious, does ChemBalance feel that you will eventually be able

to go off all of the other supplements as well?

.

> He's been taking Kirkman Everyday vitamins, enzymaid, magnesium,

COQ10, and CLO, although I just switched him to Omega Plus Flax and

Borage oil because of concerns that CLO can cause liver damage, and

also I want him getting the GLA from the borage oil.

>

[Guest guest]

,

I know Chem Balance feels that any high dose supplement will create an imbalance so that you end up deficient in something else. I have also read concerns elsewhere that longterm high doses of supplements can cause liver damage. I had been on extremely high doses of supplements myself, prescribed by my chiropractor, to make up for years of malabsorption from the celiac disease. I do think these helped me build back up some but is not natural for a lifetime. Chem Balance told me to stop them and gave me a multivitamin to take, told me it would be okay to continue the essential fatty acid supplements since that is not high dose, and I am also taking their electrolyte supplement. They also told me if I noticed discomfort from not taking digestive enzymes to go ahead and continue taking them, but I tried without and was fine. They work with each individual and it is a continuing process, meeting each person's specific needs as they change. I really don't know what they will have me do with my son's supplements. The Everyday vitamins are not high dose, I don't know what they think about COQ10, and I know they have some concerns about the safety of CLO. I have no idea what their opinion will be on enzymes! I have it on a list of questions I am compiling to ask them next time I call. But for now, since my son has not started their program, I am starting the enzymes, hoping that we will see improvement in compliance and eating, which would make starting the Chem Balance program a lot easier.

Juile in IL

[ ] Re: introduction

,Just curious, does ChemBalance feel that you will eventually be able to go off all of the other supplements as well?.> He's been taking Kirkman Everyday vitamins, enzymaid, magnesium, COQ10, and CLO, although I just switched him to Omega Plus Flax and Borage oil because of concerns that CLO can cause liver damage, and also I want him getting the GLA from the borage oil. >

[Guest guest]

For those who don't know me:

My name is Bonnie I am a friend or Rainy's, and

she thought I'd enjoy this list. I can be quite

outspoken at times and I love a good cry like everyone

else. I have so many health problems I could fill

up a text book. My medical records are at least

a foot high!

I'm a single grandma (no hubby or boyfriend)

and I'm raising my only grandchild 8 year old .

Well, she is an only until Sept. when her mom has

another baby. I've lots of aches and pains and

hurts but I've survived. also has the same

heart condition as I do and she is doing well for

now. It wasn't always that way and that is why

she lives with me.

I hope to make lots of friends. I'm a writer

and a poet and I know some folks will enjoy my

stuff... My first children's ebook will be epublished

this summer so I'm very excited about that as well.

Hope to hear from some folks real soon! If you

want to send email to me privately please use my

other email addy it is grandma007@....

God Bless, Bonnie

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

ICQ #14826055

Name: nana_bonnie

AIM Name: gmabonny

PalTalk name 007grandma

BeeCall name 007grandma

Birthday 1-16-47

___________________________________________________________________

To get your own FREE ZDNet Onebox - FREE voicemail, email, and fax,

all in one place - sign up today at http://www.zdnetonebox.com

[Guest guest]

Liked your poem and congrats on the ebook. That's great!

> For those who don't know me:

> My name is Bonnie I am a friend or Rainy's, and

> she thought I'd enjoy this list. I can be quite

> outspoken at times and I love a good cry like everyone

> else. I have so many health problems I could fill

> up a text book. My medical records are at least

> a foot high!

> I'm a single grandma (no hubby or boyfriend)

> and I'm raising my only grandchild 8 year old .

> Well, she is an only until Sept. when her mom has

> another baby. I've lots of aches and pains and

> hurts but I've survived. also has the same

> heart condition as I do and she is doing well for

> now. It wasn't always that way and that is why

> she lives with me.

> I hope to make lots of friends. I'm a writer

> and a poet and I know some folks will enjoy my

> stuff... My first children's ebook will be epublished

> this summer so I'm very excited about that as well.

> Hope to hear from some folks real soon! If you

> want to send email to me privately please use my

> other email addy it is grandma007@m...

> God Bless, Bonnie

> --------------------------------------------------

> ICQ #14826055

> Name: nana_bonnie

> AIM Name: gmabonny

> PalTalk name 007grandma

> BeeCall name 007grandma

> Birthday 1-16-47

>

>

> ___________________________________________________________________

> To get your own FREE ZDNet Onebox - FREE voicemail, email, and fax,

> all in one place - sign up today at http://www.zdnetonebox.com

[Guest guest]

hi bonnie, welcome and i like your poetry!!

kathy

[Guest guest]

Hi Bonnie. Congratulations on your ebook. I think ebooks

are really cool, and hope that they will eventually replace

traditional school books. It would surely be more

economical and they'd weigh a whole lot less, and can be

updated. I enjoy poetry and also am a writer, but I write

songs. Since many songs start out as poems, you probably

could be a songwriter. I'll be looking forward to reading

your poems.

It must be difficult to deal with RA and raise your

granddaughter. Your really are a special lady for taking

care of her. I'm sure she is a big help to you, and also

good company.

What meds do you take for RA?

a

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

From: Bonnie F.

[mailto:007grandma@...]

Sent: Friday, May 25, 2001 12:50 AM

Subject: Re: [ ] introduction

For those who don't know me:

My name is Bonnie I am a friend or Rainy's, and

she thought I'd enjoy this list. I can be quite

outspoken at times and I love a good cry like everyone

else. I have so many health problems I could fill

up a text book. My medical records are at least

a foot high!

I'm a single grandma (no hubby or boyfriend)

and I'm raising my only grandchild 8 year old .

Well, she is an only until Sept. when her mom has

another baby. I've lots of aches and pains and

hurts but I've survived. also has the same

heart condition as I do and she is doing well for

now. It wasn't always that way and that is why

she lives with me.

I hope to make lots of friends. I'm a writer

and a poet and I know some folks will enjoy my

stuff... My first children's ebook will be epublished

this summer so I'm very excited about that as well.

Hope to hear from some folks real soon! If you

want to send email to me privately please use my

other email addy it is grandma007@....

God Bless, Bonnie

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

ICQ #14826055

Name: nana_bonnie

AIM Name: gmabonny

PalTalk name 007grandma

BeeCall name 007grandma

Birthday 1-16-47

____________________________________________________________

_______

To get your own FREE ZDNet Onebox - FREE voicemail, email,

and fax,

all in one place - sign up today at

http://www.zdnetonebox.com

[Guest guest]

Hi Sue-

Welcome to this wonderful place of hope and healing of the soul. You

will find people who really understand. Instead of someone nodding

there head and saing, " I have that, I take Advil and It helps a lot. "

AAHH!! I want to scream when people say things like that to me.

Instead I smile and nod my head back

LOL

I think you like it here.

> Just wanted to say hi - have just joined the group so will try to

> catch up!

>

>

[Guest guest]

Welcome, Sue! Hope you like it here.

[ ] Introduction

> Just wanted to say hi - have just joined the group so will try to

> catch up!

>

> Sue

[Guest guest]

Welcome Orla!!!

Hi, my name is Orla McCarthy and I have a son who has been diagnosed with

Global Apraxia.

My son is now almost 8 yrs old (Sept. 2nd) and has multiple diagnoses.He was

diagnosed with a profound hearing loss at age 5 months. Then he received a

diagnosis for low muscle tone and sensory integration disorder at age

approx. two. Then at age 5 he had a diagnosis of Bilirubin Encephalopathy.

[Guest guest]

Joni

I read about toms river. Very polluted . Can't remember with what

though. Do you think this contributed to your sons autism >

kelly

> I am

> publishing a manual that I will provide nationally free of charge to

> parents, and my autistic son has been the feature (COVER) story of Toms

> River magazine (out this week).

[Guest guest]

My kids are genetic. Husband and Grandfather both aspergers. Toms River

water is known for the CANCER Cluster...Joni

>From: kc62765@...

>Reply-

>

>Subject: Re: [ ] Introduction

>Date: Sat, 25 Aug 2001 19:59:02 EDT

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Thanks for sharing Joni.Super job. Thanks for your work for our kids!Do you

do these three things with no Change in diet? What do you find that the algae

does? I would like to know more albout this.I have a 7 year old with

asperger's. I also have three other children that I think have digestive

issues. DonnaC

[Guest guest]

Karla,

Welcome! I'm glad that convinced you to hook up with us! You are very

right, there are no stupid questions here - ask anything and everything you

want. You have a great resource in - she'll be able to help you with

technical questions and she can you give you GREAT decorating tips. Max

always has the most adorable helmet decorations.

Do you have 2 boys or a girl and a boy? It sounds like from your post that

only one of your babies will need a helmet. Do I have that right? Have you

already had the casting done? I think it is great that you are pursuing this

and your baby is at a good age to get started. You should see some really

good results. Did you say it will be a locally made helmet or will you be

getting the STARband?

Glad you found us and I hope you will stick around and share more of your

story with us. Keep us posted!

Marci (Mom to )

Oklahoma

[Guest guest]

WELCOME to the group Karla. Good luck with your son's helmet, he's

on his way to a rounder head!

There is no such thing as a stupid question in this group! Just look

at my recent post, asking what type of paint to paint my livng room

with! hehe, talk about stupid!

So just your son has plagio and is getting the helmet? Not your

daughter?

Sorry you had such a struggle with your ped., SO many parents in here

stuggled with their ped also, being the great mom you are, you are

getting it handled.

Please keep us updated, and don't ever hesitate to ask ANY question!!!

Debbie Abby's mom 3/1/00 STARband 11/4/00-1/26/01 DOCgrad 2/16/01-

6/22/01

> Hi

>

> My name is Karla...I live in northern California with my husband

and my

> darling twins -who turned 6 months on the 20th ! I am a stay at

home Mom.

>

> My Ped did not " listen " to my concerns as early as 2 months on my

son, so it

> was a struggle to figure out what is going on. We just had our

first

> appointment at Children's Hospital in Oakland, Ca...and are going

with a

> helmet for the treatment.

>

> My friend.. and her son Max..have been VERY helpful in info

and support

> and photo's -so that has been great. I'm finally joining the

group and may

> have a ton of " stupid " questions, but from what I hear....there is

nothing

> but support here !

>

>

>

> ***** Karla *****

> Mommie to

> & Kirsten Grace

> 2/20/01

[Guest guest]

Hi Karla,

I too am a twin mom with one son in a helmet. There is NO such thing as a stupid question here, so fire away! I also wanted to mention that although Tommy (my plagio baby) has been in his helmet for nearly 4 months now, he only started to improve a month ago, and it was very sudden! (yay) I don't know if it is a twin thing but I wanted to point out that improvement is not always apparent at first. Totally unrelated, but maybe somebody on this site knows what I am talking about (since I so rarely do!).

Welcome and good luck!

Jill Ramos, Las Vegas, NV

Tommy and Gavin b. 12/03/00, Tommy banded 5/01

[Guest guest]

Hi Karla!

Glad to see you made it in! Welcome!

Kendra in Canadafor information on positional plagiocephaly, visitwww.plagiocephaly.org/supportwww./group/plagiocephaly..

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

From: karlala1@...

plagiocephaly

Sent: Monday, August 27, 2001 10:20 PM

Subject: Introduction

Hi My name is Karla...I live in northern California with my husband and my darling twins -who turned 6 months on the 20th ! I am a stay at home Mom. My Ped did not "listen" to my concerns as early as 2 months on my son, so it was a struggle to figure out what is going on. We just had our first appointment at Children's Hospital in Oakland, Ca...and are going with a helmet for the treatment. My friend.. and her son Max..have been VERY helpful in info and support and photo's -so that has been great. I'm finally joining the group and may have a ton of "stupid" questions, but from what I hear....there is nothing but support here !

***** Karla ***** Mommie to & Kirsten Grace 2/20/01 For more plagio info

[Guest guest]

Hi Sherry, did your son have any vaccinations just prior to losing the speech

that he did have? welcome to the group. Kate in L.A.

[Guest guest]

Sherry,

Welcome, You will find this group very helpful and supportive. I don't know

anything technical. But there are wonderful SLPs and Dr.s here to answer

you. I just wanted to welcome you and let you know your are in the right

place. We too recognized a speech delay early but nobody would listen to

us at the time. You just have to keep seeking information.

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

> My name is Sherry and I'm a Work-at-home-mom to Ian. Ian will be 19 mos.

old

> on Sat. I don't know where to start really, so I'll just jump into

things.

....

Well, I've given a lot of information, but I guess what I'm trying to say

is

> I'm not sure if Ian's problem is apraxia or not, (and I'm being told we

> can't get a diagnosis until he's older) but I'm very frustrated and

scared.

> I want to do what is best for Ian, but I don't know what I can do, and how

I

> can get some answers. This is a new subject for me, and I don't live too

> close to any major medical places to get real answers. I can't wait to

meet

> ya'll and hopefully learn some things to help my family and my son.

>

> Thank you

>

> Sherry

> mama to Ian (3/6/00)-currently being evaluated for speech delay

[Guest guest]

Your mom is correct about apraxia being the term for someone that

has lost the ability to speak after a stroke. It is also a term for

a specific childhood language problem. A speech therapist can

better define the term, but I do know it is used for both problems.

Have you noticed anything else unusual for your son? Can he give

kisses? Can he drink from a cup? Can he drink from a straw? Is he

an unusually messy eater? Does he drool a lot? If you answered yes

to those questions, I would definitely want to have him looked at

by a occupational therapist or a speech therapist.

I have 3 kids: a 7 year old and 4 year old twin girls. My daughters

both almost died when they were 6 weeks old. We knew one of them

could possibly have brain damage. Even with all of this background,

my pediatrician ignored signs of trouble with her. I knew she was

different then her 7 year old brother and her twin sister. I took

the pediatricians advice for awhile, until my daughter was 2. Then

I insisted on a speech evaluation. I'm glad I did. We've known

she's had problems for 2 1/2 years, and I'm still cannot get her the

help she needs.

I guess my advice is to trust your own instincts. Also, what are

the down sides to getting an evaluation? Now, what are the down

sides for waiting?

By the way, neither of my daughters were talking at 18 months. One

of them did start talking at around 3. Now, she mainly has

articulation problems. I think in a year or 2, she will be totally

caught up. The other just started talking at around 4 1/2 (about 6

months ago). She has lots of articulation problems and cannot say

anything longer than a 5 or 6 word sentence. It will be many years

of speech for her. Don't get too upset now. 18 months is still

very early. Just get him the help he needs.

Good luck.

Suzi

> Hello,

>

> My name is Sherry and I'm a Work-at-home-mom to Ian. Ian will be

19 mos. old

> on Sat. I don't know where to start really, so I'll just jump

into things.

> We are currently in the process of having evaluations done to get

Ian into

> the Early Intervention system. At his 18 mos checkup, my mother

and I

> discussed talking to his dr about getting Ian referred because of

his lack

> of speech. His pediatrician agreed to write the scripts we need,

but is

> saying he'll jump into talking between 2 and 3. I've chose not to

sit and

> wait though. But I'm getting ahead of myself.

> The reason I'm concerned has more to do with loss of speech rather

than lack

> of speech. Ian said his first words about 6 mos ago. Over the

next couple

> of months, we heard " dada " , " kiki " (for our cats), " dink " (for

drink), " no " ,

> " mama " , " by " , " hi " , and " isa " (for his dad's name Isaac). These

words have

> since disappeared, over the last 2-3 months. Currently, he

says " mom " ,

> though over the last week, we also heard " no " . He can do

consonant-vowel

> combinations, and does wonderful gestures. This is actually his

main form

> of communication. With no history of ear infections, this set of

red flags

> for my service coordinator in EI.

> In 6 months, Ian will have surgery to correct a congenital

pseudoarthrosis

> in his rt. shoulder, which will take away the use of his hand.

This, too,

> scares me as I fear if he is not talking, he'll lose the ability

to get his

> needs met.

> A real good thing for me is that I currently work as an

office/billing

> assistant for a developmental therapist (who also happens to be my

mother).

> She has helped guide me, and has 2 clients with verbal apraxia as

well. She

> has been a support, but I admit has created some fears too.

> At his speech eval, the therapist expressed the concern that Ian

is showing

> symptoms of verbal apraxia. I don't even know what to think.

When I

> mentioned this to my mom, she talked about causality (mainly that

in her

> knowledge, it's caused by a stroke). Well, Ian's birth was rough,

but there

> was no stroke. (Ias was induced at 39 weeks due to pregnancy

related

> hypertension. I spent the entire pregnancy on antibiotics due to

bladder

> infections, and was very stressed at the end. At birth, Ian had

the cord

> around his neck, was blue in color, and had to be given oxygen).

I rack my

> brain often wondering what I could have done differently to have

prevented

> his problem.

> Well, I've given a lot of information, but I guess what I'm trying

to say is

> I'm not sure if Ian's problem is apraxia or not, (and I'm being

told we

> can't get a diagnosis until he's older) but I'm very frustrated

and scared.

> I want to do what is best for Ian, but I don't know what I can do,

and how I

> can get some answers. This is a new subject for me, and I don't

live too

> close to any major medical places to get real answers. I can't

wait to meet

> ya'll and hopefully learn some things to help my family and my son.

>

> Thank you

>

> Sherry

> mama to Ian (3/6/00)-currently being evaluated for speech delay

[Guest guest]

Hi Sherry!

There are some very big and exciting clinical and media events

unfolding right now which is keeping many of us from CHERAB busy-but

I thought in the meantime, I would send out these 2 archived posts

from CHERAB's Medical Director, Marilyn Agin MD, to help answer your

mom's questions about the apraxia/stroke confusion.-

[Guest guest]

Hi Kim, welcome to the group. You will find lots of Moms that can help you with the insurance battle, good luck! And good luck on your banding journey!

' Mom

[Guest guest]

Hi Kim!

Welcome to the group and thanks for the intro. I'm sorry to hear of the

trouble you are having with your insurance company. Believe me - it is a

battle that LOTS of us here have had to fight! You are doing the right thing

by going through the appeals process. Since you are using a DOCband I think

it will be impossible for them to uphold their original denial because the

DOCband is FDA approved. Do you have an actual denial letter from them

stating their reason for denial? If not make sure you get one right away. If

you go through the entire appeals process with no luck you can still file a

complaint with the Department of Insurance or ask for an External Review of

you case. Of course, all of this will delay your son actually getting his

DOCband. My insurance fight took 6 months, but I ultimately won. I went ahead

with treatment and made payments to the clinic along the way. When insurance

finally agreed to paid I had already paid for the helmet in full! Of course,

all the insurance money then came to me! So I guess I am saying if you can

possibly work on a payment plan with CT until you can get the insurance co to

pay it might be a good idea to get started. I do understand about the

financial thing - my husband and I had both been laid off when we found out

our daughter needed the helmet. I know how stressful this must be for you -

not only dealing with the plagio issue, but the money and the holiday season

on top of all of that!! I think you will find this group to be an outstanding

source of advice, support and friendship. Stick with us and let us know how

things are going for you - keep the questions coming, we're here to help you!

Good wishes your way!

Marci (Mom to )

Oklahoma

[Guest guest]

Kim,

Just wanted to toss this out: someone on this board, can't remember who, held a golf tournament and raised the money for the band and then some! This raised awareness and got that band paid for! Good luck to you all!

' Mom

[Guest guest]

You can check the fda web site @ www.fda.com. Then click on 'search fda' enter

in 'DOC Band'. From your results go to maybe the third one down 510k(s)

Decisions (click). Approximately the 85th decision down is Cranial Tech's

approval of the DOC Band #K964992

>>> gerald2399@... 12/02/01 05:46PM >>>

Hello!

My name is Kim from Virginia and I am a mom to a preemie born at 34

weeks named . He is 7-months now and doing well. He has

postional plagiocephaly. Well, after 6 months of doing various

things to promote head growth and having everyone tell us we need to

do more positional things, we decided to go see a specialist. Well,

the specialist diagnosed his positional plagiocephaly and prescribed

him the DOC Band. That is where we are at now. Blue Cross and Blue

Shield already denied us and we are fighting to get it approved. I

was just wondering what did you all do in regards to insurance?

does not have the Band yet nor (unfortunately) we

do not have the money outright to pay for it due to huge bills from

his NICU stay. Tactics, techniques, pleads did you all use to get

insurance to pay? Thanks!!!

Kim A

For more plagio info