I'm new

May 24, 2001

Lori,

Welcome to the group!

Since you are one of the few people here who have actually MET Devin,

could you ple-e-e-e-e-ese let us know the truth...is that picture of

Devin on his web site a CURRENT picture?

Inquiring minds want to know.

.

> I have had my 3 yr. old son on Peptidase for 1 month and he is now

eating

> and enjoying protein for the first time which has reallyl opened up

his

> diet. He is also finally beginning to put on weight!! Yeah!!!

>

> Devin, should I give it with EVERY meal and snack or just when he

gets

> protein or a food that potentially may cause a reaction?

>

> Whats the fastest way to reorder?

>

> Lori Knowles from KS

>

> PS: I met you at the SPIN meeting and sat on your left at

Denny's. Thanks

> for your great product. I am going to take it to Dr. Baptist and

tell him

> how good it is. Do you have any promo materials to offer?

May 24, 2001

> Lori,

>

> Welcome to the group!

>

> Since you are one of the few people here who have actually MET

Devin,

> could you ple-e-e-e-e-ese let us know the truth...is that picture

of

> Devin on his web site a CURRENT picture?

>

> Inquiring minds want to know.

>

> .

>

Okay, I gotta see. Where's his website? I can finally put a face to

the admiration!

May 24, 2001

> I have had my 3 yr. old son on Peptidase for 1 month and he is now

eating

> and enjoying protein for the first time which has reallyl opened up

his

> diet. He is also finally beginning to put on weight!! Yeah!!!

>

> Devin, should I give it with EVERY meal and snack or just when he

gets

> protein or a food that potentially may cause a reaction?

>

> Whats the fastest way to reorder?

>

> Lori Knowles from KS

>

> PS: I met you at the SPIN meeting and sat on your left at

Denny's. Thanks

> for your great product. I am going to take it to Dr. Baptist and

tell him

> how good it is. Do you have any promo materials to offer?

Hi, Lori;

Yes, I remember you. Glad to hear the Peptizyde is working. You can

use it with every meal, but if he's doing good with the current

regimine, you may not want to change it. I'm wondering if some of

the reports of loose stools after using Peptizyde for awhile may be

due to Peptizyde being too much, after initially cleaning out the

system. Still not sure, probably has to do with individual

differences.

One of the things we want to do is develop a database of

Peptizyde/Zyme Prime usage, so we can see whether there are certain

results observable with certain doses of the enzymes. So, stay

tuned..

Don't have any promo materials yet, I'll probably be dabbling in that

soon, though.

You can order through the toll-free phone # 866-757-8627 or email me;

once I have you on account, it's just a matter of calling or emailing.

Nice to hear from you, Lori!

May 24, 2001

> > Lori,

> >

> > Welcome to the group!

> >

> > Since you are one of the few people here who have actually MET

> Devin,

> > could you ple-e-e-e-e-ese let us know the truth...is that picture

> of

> > Devin on his web site a CURRENT picture?

> >

> > Inquiring minds want to know.

> >

> > .

> >

> Okay, I gotta see. Where's his website? I can finally put a face to

> the admiration!

Oh, you're gonna be so disappointed!!

May 24, 2001

> > Okay, I gotta see. Where's his website? I can finally put a face

to

> > the admiration!

>

> Oh, you're gonna be so disappointed!!

LOL.... The suspense is KILLING me!! Are we allowed to post our

websites on here? I can post my webshot site so y'all (Oklahoma slang

meaning " you all " ) can see my family.

May 24, 2001

Sure, you can post your web site and pictures.

.

>

> > > Okay, I gotta see. Where's his website? I can finally put a

face

> to

> > > the admiration!

> >

> > Oh, you're gonna be so disappointed!!

>

> LOL.... The suspense is KILLING me!! Are we allowed to post our

> websites on here? I can post my webshot site so y'all (Oklahoma

slang

> meaning " you all " ) can see my family.

May 24, 2001

Devin,

All the talk about loose stools has me thinking. My son's stools are

REALLY runny right now and I was assuming that it had to do with a yeast

problem.. he is exhibiting behaviors that seems to point to systemic

yeast. He weighs 29 lbs and I have been giving him 1 whole capsule per

meal. Do you think it may be too much and should I try halving it to see

if the stools change any?

Lori

At 08:26 PM 5/24/01 +0000, you wrote:

>

> > I have had my 3 yr. old son on Peptidase for 1 month and he is now

>eating

> > and enjoying protein for the first time which has reallyl opened up

>his

> > diet. He is also finally beginning to put on weight!! Yeah!!!

> >

> > Devin, should I give it with EVERY meal and snack or just when he

>gets

> > protein or a food that potentially may cause a reaction?

> >

> > Whats the fastest way to reorder?

> >

> > Lori Knowles from KS

> >

> > PS: I met you at the SPIN meeting and sat on your left at

>Denny's. Thanks

> > for your great product. I am going to take it to Dr. Baptist and

>tell him

> > how good it is. Do you have any promo materials to offer?

>

>Hi, Lori;

>Yes, I remember you. Glad to hear the Peptizyde is working. You can

>use it with every meal, but if he's doing good with the current

>regimine, you may not want to change it. I'm wondering if some of

>the reports of loose stools after using Peptizyde for awhile may be

>due to Peptizyde being too much, after initially cleaning out the

>system. Still not sure, probably has to do with individual

>differences.

>One of the things we want to do is develop a database of

>Peptizyde/Zyme Prime usage, so we can see whether there are certain

>results observable with certain doses of the enzymes. So, stay

>tuned..

>

>Don't have any promo materials yet, I'll probably be dabbling in that

>soon, though.

>

>You can order through the toll-free phone # 866-757-8627 or email me;

>once I have you on account, it's just a matter of calling or emailing.

>Nice to hear from you, Lori!

>

May 25, 2001

I looked up his website but didn't see his picture. Where is it hidden?

Lori

At 08:46 PM 5/24/01 +0000, you wrote:

> > > Okay, I gotta see. Where's his website? I can finally put a face

>to

> > > the admiration!

> >

> > Oh, you're gonna be so disappointed!!

>

>LOL.... The suspense is KILLING me!! Are we allowed to post our

>websites on here? I can post my webshot site so y'all (Oklahoma slang

>meaning " you all " ) can see my family.

>

May 25, 2001

> Devin,

>

> All the talk about loose stools has me thinking. My son's stools

are

> REALLY runny right now and I was assuming that it had to do with a

yeast

> problem.. he is exhibiting behaviors that seems to point to

systemic

> yeast. He weighs 29 lbs and I have been giving him 1 whole capsule

per

> meal. Do you think it may be too much and should I try halving it

to see

> if the stools change any?

>

> Lori

You could cut back to giving with 2 meals a day, and see if the

stools change.

Devin

> >

December 6, 2001

I was in your situation 6 years ago when my 4-year-old daughter was

diagnosed with CMT, a condition that my wife and I had never heard of and

had no symptoms of. I was initially devastated and scared, but in the years

since then I've learned a lot about CMT and realize that I overreacted. Keep

connected with this discussion group and feel free to send in questions,

concerns, feelings, etc. and you'll learn like I did. Also, look at what

your daughter can do (nearly anything), consider how slowly CMT progresses,

if at all, and thank god that she doesn't have a condition that threatens

her life or her mind. Also remember that neurological conditions like CMT

are directly in the crosshairs of exciting new genetic research that is

rapidly advancing. The development of new stem cell therapies, neuro repair

procedures, drug therapies, etc. all promise a treatment or cure that your

daughter, and my daughter will see before long.

Please feel free to write directly to me if you have any questions.

--------- Rick Alber

You wrote:

Date: Thu, 06 Dec 2001 17:41:29 -0000

From: " kellybenzo " <kwilson@...>

Subject: I'M NEW

Hello. My daughter who is 6 was just diagnosed with CMT yesterday.

Does anyone have a child with CMT? I'm a wreck..I don't understand

all of this...what is going to happen to her? Any input I'd

appreciate.

December 7, 2001

I know things must be really hard right now....Just finding out and not

knowing tons about the disease..You've come to the right place to get

your questions answered. First of all, just to calm your fears, CMT is

not life threatening. Sure, it can change the way you live, but it is not

life threatening and there are many new medications and treatments that

can help...Feel free to ask as many questions as you want and need or

just sit back and read the questions that are posted. We are here for

you, connected in many different ways. Some of us have CMT, others know

people who have CMT...But altogether we work together to share and make

things easier to each other, emotionally and physically....CMT is tough,

but life is stronger.....

Marzinski

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

December 7, 2001

I know exactly what you are going through. my son 4 yrs. old was just

diagnosed with CMT and is under going many tests to be 100% sure.

it's very tough. and they seem to take it much easier than we do as

the parents. i am a member of the group for CMT just like this

one and have gotten alot of answers and suggestions. it's a great way

to learn. and i am so glad i found all of you to help me and

hopefully i will be able to help some of you also. it's hard for me

to keep up with everything with little time to be online.

alittle about my situation is, i noticed my son had problems when he

started walking. he walked pigeon toed and triped over his foot alot.

i brought it up to his doctor that said he'd out grow it. i took her

word and waited till i saw he was walking on the side of his foot as

well by the time he was 2.( he didn't start walking till he was 1 and

a few months). i then took him to a specialist at age 3 1/2 that said

it was hip rotation and he would out grow it. not satisfied with this

again, i took him for a second opinion. that took us to the

shrinner's hospital where he had several tests then sent to the

neurologist. and here we are a year later. still having tests and i'm

getting frustrated with all the waiting. so hang in there. and read

the post. it helps. can't wait to get to know you all.

renee

> I know things must be really hard right now....Just finding out and

not

> knowing tons about the disease..You've come to the right place to

get

> your questions answered. First of all, just to calm your fears, CMT

is

> not life threatening. Sure, it can change the way you live, but it

is not

> life threatening and there are many new medications and treatments

that

> can help...Feel free to ask as many questions as you want and need

or

> just sit back and read the questions that are posted. We are here

for

> you, connected in many different ways. Some of us have CMT, others

know

> people who have CMT...But altogether we work together to share and

make

> things easier to each other, emotionally and physically....CMT is

tough,

> but life is stronger.....

> Marzinski

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

December 7, 2001

Hi

There are many of us whose kids have CMT so we know exactly what you're going

through so first off please remember you're not on your own in this. We're here

for you and your daughter.

Secondly the fact that she has been diagnosed at a young age is a good and

positive thing because now she can get the proper help and care she needs which

will undoubtedly lessen the potential outcome of her CMT.

And third re-read what Rick said CMT is not the end of the world far from it.

It's just the start of a new chapter there are wonderful people out there who

are doing fantastic work for your daughter and they care.

Take a deep breath and smile you've found us at and it's going to be OK.

Love and hugs

Sue X

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: kellybenzo

Sent: Thursday, December 06, 2001 5:41 PM

Subject: [] I'M NEW

Hello. My daughter who is 6 was just diagnosed with CMT yesterday.

Does anyone have a child with CMT? I'm a wreck..I don't understand

all of this...what is going to happen to her? Any input I'd

appreciate.

December 7, 2001

My daughter is 2 and we just found out a month ago. If you want to talk about

this you can e-mail me direct at karabrisendine@... I know exactly what you

are going through. It is not fun when you first find out but it really does get

better once you start talking to people that have this and that it is not the

end of the world. There could be worse things that we could have. We have to

thank God everyday that we are here and He will help us through this.

Kara

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

From: kellybenzo

Sent: Friday, December 07, 2001 3:28 AM

Subject: [] I'M NEW

Hello. My daughter who is 6 was just diagnosed with CMT yesterday.

Does anyone have a child with CMT? I'm a wreck..I don't understand

all of this...what is going to happen to her? Any input I'd

appreciate.

June 12, 2002

natalie

my son is also 4 1/2 months old (born 1/21/02) - we have an

appointment with a plastic surgeon 6/19 (1 week eeeek) to find out

how bad his head is and what we need to do for him - we've tried

repositioning now for almost 3 months with no success (it's actually

gotten worse) and have decided we just want to take care of this as

soon as possible - welcome to the group

traci & alec

(you can e-mail me offlist too if you want traecer@...)

> Hi...I just joined this list. My son is 4 1/2 months old and was

> diagnosed with having a flat head. It is pretty flat in the back

and

> flatter on his right side.

>

> We took him to a specialist...and he pretty much said that we

should

> bring him back in a month...and to keep him off the back and right

> side of his head. And most likely his head will not round out in a

> month..and he will need the moulding helmet.

>

> I hope to get to know everyone soon...well this is a big group..lol.

>

June 12, 2002

:

Hi & welcome to our group! Yes, this is a very big group, hehe. The

more the merrier I say .

Have you tried repositioning your son? He is still young enough to

possibly get some improvement with repositioning. Check out

www.plagiocephaly.org/support for some good repositioning tips.

There are also a lot of links in our " bookmarks " section on our

board.

Do you have your appt already scheduled next month with the

specialist?

Good luck over the next month, I hope your son's head will round some

on it's own. Please be sure to keep us updated - welcome again!

Debbie Abby's mom 3/1/00 DOCgrad 6/22/01

MI

> Hi...I just joined this list. My son is 4 1/2 months old and was

> diagnosed with having a flat head. It is pretty flat in the back

and

> flatter on his right side.

>

> We took him to a specialist...and he pretty much said that we

should

> bring him back in a month...and to keep him off the back and right

> side of his head. And most likely his head will not round out in a

> month..and he will need the moulding helmet.

>

> I hope to get to know everyone soon...well this is a big group..lol.

>

June 12, 2002

-

Hi! You're son is at a great age for correction. My son was banded

a day before he was 5 months. He wore it for 3 months and got

pretty much 100% correction.

If the specialist is doubtful that you will see any addt'l

improvement in a month, why is he waiting? It can take a while to

get the whole ball rolling with insurance and everything. You might

want to start doing research and setting up appointments now. Next

month if you aren't going with a helmet/band, you can always cancel

them. That way you aren't losing anymore precious time after you

get the go ahead (or the thumbs up!) from the specialist.

Dane's mom DOC Grad

> Hi...I just joined this list. My son is 4 1/2 months old and was

> diagnosed with having a flat head. It is pretty flat in the back

and

> flatter on his right side.

>

> We took him to a specialist...and he pretty much said that we

should

> bring him back in a month...and to keep him off the back and right

> side of his head. And most likely his head will not round out in

a

> month..and he will need the moulding helmet.

>

> I hope to get to know everyone soon...well this is a big

group..lol.

>

June 12, 2002

Hi welcome to the group so glad you found us. Could you tell us more about you and your son. His age is a great time to reposition and seek treatment if necessary. We would love to see pictures if you can scan some in. I am going to attach some links that might help you with repositioning.

Beck

Click here: Baby Slings, Baby rs from Maya Wrap

Click here: Butterfly Support Pillow, positioning aid for premature infants

Click here: Repositioning Techniques

Click here: FAQ

Click here: Boppy Nursing and Infant Support Pillows, Play Mats and Activity Gyms

June 12, 2002

Also...I'll send more pictures of when i download them from my digital

camera! They will be more recent. I don't think i have any pictures of the

back of his head though..maybe i'll take some...

Mom to

June 12, 2002

Hi and welcome! You're right - this is a pretty huge group, but

somehow we do manage to get to know one another pretty well. Sounds like your

specialist is on the right track. Has he suggested repositioning in the

interim? That could only help! Also, does your son have torticollis? If so

stretching and PT could also help in the meanwhile. If in a month improvement

has not started to occur then a moulding helmet or band would be very

effective at that age. These devices rely heavily on growth spurts at at 5

1/2 months he will have some great ones!

You might check out www.plagiocephaly.org/support for some great info on

plagio and some good suggestions for repositioning. Best wishes to you and

please keep us posted!

Marci (Mom to )

Oklahoma

June 13, 2002

,

is sooo cute - absolutely adorable!

Marci

June 13, 2002

Hi . I'm pretty new to the group too. I just found out

about the group about 2 1/2 weeks ago. My son is 7 months old now

and when we first noticed his flat head at 3 months, our

pediatrician didn't offer any suggestions for repositioning. So,

all I did was turn his face and of course, he would turn it back:).

When I found out about this group, someone suggested that I visit

the repositioning techniques site. These have been working well for

me particularly when he is sleeping. With your son being only 4 1/2

months old, these might really work for you! I'll cross my fingers

for you for good results. For me though, I wish I hadn't let those

early months slip away waiting to 'see what happens'. I had gambled

the chance of an early correction on a small hope that it would

round out on its own like the doctor said. Our first appointment to

see the specialist is this Monday.

(Kale's mommy)

> Hi...I just joined this list. My son is 4 1/2 months old and was

> diagnosed with having a flat head. It is pretty flat in the back

and

> flatter on his right side.

>

> We took him to a specialist...and he pretty much said that we

should

> bring him back in a month...and to keep him off the back and right

> side of his head. And most likely his head will not round out in

a

> month..and he will need the moulding helmet.

>

> I hope to get to know everyone soon...well this is a big

group..lol.

>

June 13, 2002

In a message dated 6/12/2002 10:36:21 PM Eastern Standard Time, marcisch@... writes:

Also, does your son have torticollis?

Thanks Marci!! I'm not sure...the specialist basically had asked us a few questions...and looked at his head. I think he assumed that had it b/c used to favor his right side..and mostly look that way. But that was when he was younger..and i was reading that around 3 months...they stop looking in one direction. And now that it's flat on that side..it's easier for him to lay on that side..but he looks both ways fine...so i don't really think so. But i think the dr just assumed he does...that's the one thing i wasn't happy with...but otherwise i figured his plan to try repositioning and if not a helmet..was good. He's supposed to be a great dr...He even has a picture up on the wall of President Bush...and it said thank you for all your help...and it was signed by Bush...and he had a lot of newspaper articles of himself....so i guess he's kind of well known. Anyway, I hope the helmet works for !!

Thanks again,

Mom to

June 13, 2002

In a message dated 6/12/2002 11:20:11 PM Eastern Standard Time, marcisch@... writes:

,

is sooo cute - absolutely adorable!

Marci

Thank you so much Marci!!

June 13, 2002

Thanks ,

Yea..we are placing him to sleep on his side and trying to keep him off the back of his head as much as possible. The dr doesn't seem to think this will work in one month...and by 5 months he wants to do the helmet. So far it doesn't really seem like it's working..but it's only been a week. It does seem like some of his hair is growing though..since he had some bald spots..lol.

Good luck with your appointment. Let us know how it goes!!

Mom to

In a message dated 6/13/2002 12:19:44 AM Eastern Standard Time, mjl_2@... writes: