Re: New to the Group -

[Guest guest]

Hi ~

I'm Mimi - mom to 6 kiddos and live in Green Bay, WI. We moved here almost 2

years ago from Huntington, WV because of better education and medical care. All

5 of my kiddos are special needs and my little Noah is deceased (stillborn).

When we decided to move we did a ton of research - then I researched the top

100 children's hospitals in America and Milwaukee was #2. Now I knew I didn't

want to live in a huge city, so we then reasearched Green Bay... it is small

enough but close to Milwaukee (about 2 hours).... The education is perfect...

I have not had " use my forces " for anything - 4 of the kids have full IEPs, and

I am also a parent advocate here and still have not had any issues with

anything. The medical care is awesome!

Here is Green Bay MUMS Parent to Parent is located ( Gordon is the

founder) was a huge source of info for me too and now I'm in the process of

starting a MUMS support group here.

Here is the dx's of my kids and that might share a little of why I needed the

best I could find for my family....

Bethany 18 ~ macromastia, unmedicated bipolar (her choice)

Lauryn 16 - down syndrome, hydrocephallus, acantosis nigrans, brown's

syndrome, severe cognitive delays (functions around 5-7 yrs old)

Maurra 10 - cerebral palsy, bipolar disorder, asperger's syndrome, amblyopia,

encorpresis

Noah - stillborn 7-5-00

Garrett 5 - global developmental delays, mood disorder nos, severe separation

anxiety

4 - fetal valproic acid syndrome, encephalopathy, plagiocephally,

asthma, global developmental delays and growth retardation (I hate that word)

My husband is also disabled with Gulf War Syndrome - we are getting service

connected disability, just trying to finish up all of the paperwork... I can't

imagine how many trees died because of this process!

Good Luck!

Mimi

Green Bay, WI - the toilet paper capitol

OpenArms Campaign <openarmscampaign@...> wrote:

Hi. I am new to the list. I have five kids and my youngest Wyatt has

Down

syndrome. I have a few questions for the group. He is going to be three in

October and is scheduled to start a preschool program here in Texas. I

visited two different school programs here and was not impressed. Wyatt is

hard of hearing also, uses hearing aids, and is non verbal and none of the

teachers signed. He does have a " hearing " therapist and she said she can

teach the teachers a few signs but I would like a more intense program. I

also am all for inclusion and so my question is this-if you could go to any

program anywhere in the US, what would you choose? We are leaving here for

a three month long RV trip and at the end we hope to have an idea where we

will live and much of that will be based on his schooling. Thanks,

Spread love everywhere you go. Let no one ever come to you

without leaving happier.

Mother

please check out my website: www.PaintingsBy.com

__________________________________________________________

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[Guest guest]

then I researched the top 100 children's hospitals in

America and Milwaukee was #2.

just curious do you remember what #1 was

C- Mom to 4- Robbie (8.5), Zoë (8), (3.5),

and Drew (1.5).

Re: new to the group -

Hi ~

I'm Mimi - mom to 6 kiddos and live in Green Bay, WI. We

moved here almost 2 years ago from Huntington, WV because

of better education and medical care. All 5 of my kiddos

are special needs and my little Noah is deceased

(stillborn).

When we decided to move we did a ton of research - then I

researched the top 100 children's hospitals in America and

Milwaukee was #2. Now I knew I didn't want to live in a

huge city, so we then reasearched Green Bay... it is small

enough but close to Milwaukee (about 2 hours).... The

education is perfect... I have not had " use my forces " for

anything - 4 of the kids have full IEPs, and I am also a

parent advocate here and still have not had any issues with

anything. The medical care is awesome!

Here is Green Bay MUMS Parent to Parent is located (

Gordon is the founder) was a huge source of info for me too

and now I'm in the process of starting a MUMS support group

here.

Here is the dx's of my kids and that might share a little

of why I needed the best I could find for my family....

Bethany 18 ~ macromastia, unmedicated bipolar (her

choice)

Lauryn 16 - down syndrome, hydrocephallus, acantosis

nigrans, brown's syndrome, severe cognitive delays

(functions around 5-7 yrs old)

Maurra 10 - cerebral palsy, bipolar disorder, asperger's

syndrome, amblyopia, encorpresis

Noah - stillborn 7-5-00

Garrett 5 - global developmental delays, mood disorder

nos, severe separation anxiety

4 - fetal valproic acid syndrome, encephalopathy,

plagiocephally, asthma, global developmental delays and

growth retardation (I hate that word)

My husband is also disabled with Gulf War Syndrome - we

are getting service connected disability, just trying to

finish up all of the paperwork... I can't imagine how many

trees died because of this process!

Good Luck!

Mimi

Green Bay, WI - the toilet paper capitol

OpenArms Campaign <openarmscampaign@...> wrote:

Hi. I am new to the list. I have five kids and my

youngest Wyatt has Down

syndrome. I have a few questions for the group. He is

going to be three in

October and is scheduled to start a preschool program

here in Texas. I

visited two different school programs here and was not

impressed. Wyatt is

hard of hearing also, uses hearing aids, and is non

verbal and none of the

teachers signed. He does have a " hearing " therapist and

she said she can

teach the teachers a few signs but I would like a more

intense program. I

also am all for inclusion and so my question is this-if

you could go to any

program anywhere in the US, what would you choose? We are

leaving here for

a three month long RV trip and at the end we hope to have

an idea where we

will live and much of that will be based on his

schooling. Thanks,

Spread love everywhere you go. Let no one ever come to

you

without leaving happier.

Mother

please check out my website: www.PaintingsBy.com

_________________________________________________________

_

Get the new Windows Live Messenger!

http://imagine-msn.com/messenger/launch80/default.aspx?lo

cale=en-us & source=wlmailtagline

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

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PC-to-Phone call rates.

[Guest guest]

Philadelphia's CHOP was rated #1

Di

Re: new to the group -

Hi ~

I'm Mimi - mom to 6 kiddos and live in Green Bay, WI. We

moved here almost 2 years ago from Huntington, WV because

of better education and medical care. All 5 of my kiddos

are special needs and my little Noah is deceased

(stillborn).

When we decided to move we did a ton of research - then I

researched the top 100 children's hospitals in America and

Milwaukee was #2. Now I knew I didn't want to live in a

huge city, so we then reasearched Green Bay... it is small

enough but close to Milwaukee (about 2 hours).... The

education is perfect... I have not had " use my forces " for

anything - 4 of the kids have full IEPs, and I am also a

parent advocate here and still have not had any issues with

anything. The medical care is awesome!

Here is Green Bay MUMS Parent to Parent is located (

Gordon is the founder) was a huge source of info for me too

and now I'm in the process of starting a MUMS support group

here.

Here is the dx's of my kids and that might share a little

of why I needed the best I could find for my family....

Bethany 18 ~ macromastia, unmedicated bipolar (her

choice)

Lauryn 16 - down syndrome, hydrocephallus, acantosis

nigrans, brown's syndrome, severe cognitive delays

(functions around 5-7 yrs old)

Maurra 10 - cerebral palsy, bipolar disorder, asperger's

syndrome, amblyopia, encorpresis

Noah - stillborn 7-5-00

Garrett 5 - global developmental delays, mood disorder

nos, severe separation anxiety

4 - fetal valproic acid syndrome, encephalopathy,

plagiocephally, asthma, global developmental delays and

growth retardation (I hate that word)

My husband is also disabled with Gulf War Syndrome - we

are getting service connected disability, just trying to

finish up all of the paperwork... I can't imagine how many

trees died because of this process!

Good Luck!

Mimi

Green Bay, WI - the toilet paper capitol

OpenArms Campaign <openarmscampaign@...> wrote:

Hi. I am new to the list. I have five kids and my

youngest Wyatt has Down

syndrome. I have a few questions for the group. He is

going to be three in

October and is scheduled to start a preschool program

here in Texas. I

visited two different school programs here and was not

impressed. Wyatt is

hard of hearing also, uses hearing aids, and is non

verbal and none of the

teachers signed. He does have a " hearing " therapist and

she said she can

teach the teachers a few signs but I would like a more

intense program. I

also am all for inclusion and so my question is this-if

you could go to any

program anywhere in the US, what would you choose? We are

leaving here for

a three month long RV trip and at the end we hope to have

an idea where we

will live and much of that will be based on his

schooling. Thanks,

Spread love everywhere you go. Let no one ever come to

you

without leaving happier.

Mother

please check out my website: www.PaintingsBy.com

_________________________________________________________

_

Get the new Windows Live Messenger!

http://imagine-msn.com/messenger/launch80/default.aspx?lo

cale=en-us & source=wlmailtagline

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

How low will we go? Check out Messenger's low

PC-to-Phone call rates.

[Guest guest]

Oh I have been waiting ever so patiently, hoping hoping hoping

would Welcome me too!!!! He finally did!!!! Yeahhhhhhhhhhh!! LOL I

was getting worried you have skipped over me, ! Thank you,

truly, for taking the time to Welcome me and so many New Members.

You truly brightened my day, receiving your wonderful email first

thing this morning while I waited for the Advil to kick in and the

hands to wake up too.

I did see a new Dermotologist. He was WONDERFUL, quite concerned,

caring and very helpful. He did ask me how I came to see him and I

explained that his colleage looked at the angry red psoriasis on my

left lower leg and said " hum, I've never seen anything like that

before. " New doctor looked at me, smiled and said " She did NOT say

that to you???? " I said that she absolutely did and he repeated what

he said the first time followed by " well, that's not really like

her. " He looked at the chart and said " I will assure you she did

actually write on the chart that you appeared to have psoriasis. " I

replied " Well now wouldn't it have been nice if she had said that to

me and if she had said she wanted to see me again in a month or so

instead of SIX MONTHS!! I then filled him in on the bumblings of my

primary and the fact that I had an appointment to see him, drove the

12 miles to my appointment only to find he was out sick. He looked

at me and said " And here I am an hour late seeing you today and you

are still smiling at me. Mrs. , I am truly sorry that we have

not treated you very well so far. " The appointment was so helpful

too!! He was very hands on, as opposed to other doctors that

diagnose and treat you from 6 feet away. He looked at my scalp and

said " My dear you have a serious case of scalp psoriasis. " I was so

delighted to hear that, oddly enough, because I have had this for

YEARS! I have not been able to wear anything dark in forever, and I

must say I look good in black...LOL Every skin problem I have had

over the past 20 years has all been psoriasis, though much of it was

diagnosed by various doctors as " fungal infections " and truly, I

believe misdiagnosed because of my weight. THe new dermotologist has

me using a series of creams for various areas of my body - Clobetasol

Propionate for my scalp which has worked wonders (for the first time

in many years I don't feel the need to itch my head ALL the time), a

compound of Clotrimazole in Desonide Cream for delicate areas such as

face, armpits, and areas private only to me (LOL), Dovonex at night

before bed to all exposed body areas affected, and Betamethasone

Dipropionate Ointment applied to those same areas in the day

(morning). Most of the psoriasis, some of which has been ongoing for

2 years, is clearing up very nicely - though clearly there is some

longterm skin damage which I will live with for sure.

I have yet to make another appointment with the Rheumy, like many

others before me I'm a little reticent about starting the serious

drug regiments, though Kathy and Sherry very gently (as I recall)

suggested I should start them as soon as possible in hopes of

limiting joint damage. My Rheumy did tell me she wanted to see me

the first moment I noticed the PA rears it's ugly head any place

other than where it was when she first saw me, which was about 6

weeks ago. I believe she is going to send me another appointment

within 3 months of the first. I also believe my HMO will want to see

that I have gone through " lesser " treatments before moving on. I do

believe I am doing just that. The one thing I have noticed over the

last 6 weeks is the fact that I really need far more sleep and feel

so tired much of the time. I am working too make things much simpler

in my life, and that really helps.

I know I rambled on, and I thank you all for " listening " !

.....you are a bright shining light and I thank you for

touching me with that light today!!

Sandy

Pacifica, CA

On Feb 5, 2007, at 7:07 AM, martincoyless@... wrote:

>

> In a message dated 20/01/2007 22:52:41 GMT Standard

> Time,StampinSan@...

> writes:

>

> After looking at the photos on this website my PA is more

> manageable than

> some. I am

> happy to be a member of this group and hope to find a common ground

> with many

> of you.

>

> Hi Sandy,

>

> Welcome to the group. I'm glad you found us but sorry you had to. I

> feel your

> friend was 100% correct to suggest that you find another Derm.

> Maybe it is

> just me but I find it amazing that a Derm can't recognise P. I hope

> that the new

> derm and the Rheumy you will be seeing can get you on to the meds

> that will

> help you as soon as possible.

>

> Reading on:

>

> Sandy, Please know that Kathy keeps a very good eye on what gets

> through for

> the rest of us to see. (and she sometimes has to take a lot of

> hassle for

> doing so) She won't necessarily stop the stuff from getting through

> but if she

> considers it to be 'Not scientifically proven,' she will say so and

> then people

> can make up their own minds. I hope Kathy was able to put your mind

> at rest

> regarding this.

>

> Let us know how things go after your specialist appointments. I

> hope they go

> well for you.

>

> Take care,

>

>

>

>

[Guest guest]

Hi Sandy:

Thanks for your cheerful email. The happiness you expressed, cheered up many

others like me, I am sure. Thanks also for the details of the prescriptions.

You wrote: " Clobetasol Propionate for my scalp which has worked wonders (for

the first time

in many years I don't feel the need to itch my head ALL the time), "

I use Clobetasol, I wonder how long do I have to use for. I use it a few

times in my ears and scalp; now these areas are clear, should I stop?

" a compound of Clotrimazole in Desonide Cream "

Is that a prescription cream?

" for delicate areas such as face, armpits, and areas private only to me

(LOL), "

I did not understand this " private only, " do you mean " private to you only and

not private to others? "

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

Sucker-punch spam with award-winning protection.

Try the free Beta.

[Guest guest]

OK, I'm butting in here for the first time (I've been lurking for a

few weeks). I've had psoriasis on my scalp for a number of years. My

dermatologist prescribed Capex (fluocinolone acetonide), which is a

topical shampoo, and Olux (clobetasol propionate), which is a foam

that I apply (with my fingers) to the parts of my scalp that need it.

Originally, I used the shampoo and foam every other day until the

itching, redness and flaking went away; I now use it twice a week -

it keeps my scalp psoriasis totally under control. If I slack off on

using it, I'll start getting itchy and flaky again; when this

happens, I'll go back to using it every other day for a couple weeks.

-- Sheryl

" Clobetasol Propionate for my scalp which has worked

wonders (for the first time

> in many years I don't feel the need to itch my head ALL the time), "

>

> I use Clobetasol, I wonder how long do I have to use for. I use

it a few times in my ears and scalp; now these areas are clear,

should I stop?

>

> " a compound of Clotrimazole in Desonide Cream "

> Is that a prescription cream?

>

> " for delicate areas such as face, armpits, and areas private

only to me (LOL), "

> I did not understand this " private only, " do you mean " private to

you only and not private to others? "

>

>

>

>

>

>

>

>

>

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

> Sucker-punch spam with award-winning protection.

> Try the free Beta.

>

>

[Guest guest]

,

I can't tell you from my own experience because my own unvaxed guy is

only 6 weeks old.

But I work for early intervention and have worked with hundreds and

hundreds of kids from birth to age three. I have only worked with a few

who were unvaxed - they were pretty much the only ones that weren't

chronically ill with ear infections and what not. I see so very many

kids who regressed after vaccination. It breaks my heart.

Melinda C. in Mass.

[Guest guest]

Welcome !

You've received some good replies to your post so far. I've been a part of

this list for about 8 years now and know that the majority of members with

unvaccinated have the healthiest kids I've ever " known. "

My children who are 17 and 18 now were unfortunately fully vaccinated when

they were little (we stopped about 10 years ago though when I learned the

dangers of vaccines). I was an RN and assumed everyone vaccinated and that

was the thing to do to have " healthy " kids.

I was in for a rude awakening. I had 2 of the sickest kids ever. I know we

were at the pediatrician's office at least every 8 weeks (if not more often)

for ear infections, URIs, rashes, fevers, stomach problems, etc. etc. The

thing was, everyone else I knew pretty much dealt with the same thing, so I

never thought too much about it. I never knew of anyone who didn't

vaccinate their children to compare them to mine.

If I had to do it over again, I wouldn't have my kids get any vaccines and

no antibiotics. My son was on antibiotics every day for almost a year

straight (for ear infections), then ended up with tubes in his ears and

STILL had infections.

That's not health by any stretch of the term! I finally realized (too late

for my babies), that health does NOT come from a pill or a shot. It comes

from a strong immune system which is only built with things like a healthy

diet, exercise, and sunshine.

Vaccines do NOTHING to strengthen the immune system and everything to erode

away the defense system we were born with.

Keep researching. I recommend Sheri Nakken's online classes about the

reality of childhood illnesses to help dispel the fear that comes from the

years of belief in the medical industry.

Kay

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

From: karen rao

Hi: I am new to the group and am excited to find support. I feel like I am

alone among my friends and family to even question the issue of vaccines in

children. I have read Neil Z. , Cave and numerous other

books and websites on the issues and am leaning towards not vaccinating.

However, I am not sure my DH would join me in the bandwagon. We have a 3

month old that we have delayed vaccinations for a year till we research this

further. He has already seen Dr.Teripenny (sp) video. My question to this

group is

1. How many of you have children that have never been vaccinated and are

still healthy??

2. We have family living all over the world including India, Australia,

Europe and China! If we travel to visit them, should we consider

vaccinations and how many people in this group have travelled over the world

without vaccinating their children??

[Guest guest]

Hi ,

I vaccinated my 4 year old daughter and for the first couple years of

her life she was sick all the time. She got 2 or 3 ear infections

every month. With my son, we gave him the hep. B shot at birth and

he immediately came down with RSV followed by an ear infection. That

was the only vaccine he got and since has been perfectly healthy,

with no more ear infections. I saw a study once that said that kids

who are vaccinated have 80% more ear infections than those whow are

unvaxed. Also, on McCarthy's site there is a study of boys in

California and the ones who were vaxed were 150 times more likely to

get autism.

Hope this helps

>

> Welcome !

>

> You've received some good replies to your post so far. I've been a

part of

> this list for about 8 years now and know that the majority of

members with

> unvaccinated have the healthiest kids I've ever " known. "

>

> My children who are 17 and 18 now were unfortunately fully

vaccinated when

> they were little (we stopped about 10 years ago though when I

learned the

> dangers of vaccines). I was an RN and assumed everyone vaccinated

and that

> was the thing to do to have " healthy " kids.

>

> I was in for a rude awakening. I had 2 of the sickest kids ever.

I know we

> were at the pediatrician's office at least every 8 weeks (if not

more often)

> for ear infections, URIs, rashes, fevers, stomach problems, etc.

etc. The

> thing was, everyone else I knew pretty much dealt with the same

thing, so I

> never thought too much about it. I never knew of anyone who didn't

> vaccinate their children to compare them to mine.

>

> If I had to do it over again, I wouldn't have my kids get any

vaccines and

> no antibiotics. My son was on antibiotics every day for almost a

year

> straight (for ear infections), then ended up with tubes in his ears

and

> STILL had infections.

>

> That's not health by any stretch of the term! I finally realized

(too late

> for my babies), that health does NOT come from a pill or a shot.

It comes

> from a strong immune system which is only built with things like a

healthy

> diet, exercise, and sunshine.

>

> Vaccines do NOTHING to strengthen the immune system and everything

to erode

> away the defense system we were born with.

>

> Keep researching. I recommend Sheri Nakken's online classes about

the

> reality of childhood illnesses to help dispel the fear that comes

from the

> years of belief in the medical industry.

>

> Kay

>

> -----Original Message-----

> From: karen rao

>

> Hi: I am new to the group and am excited to find support. I feel

like I am

> alone among my friends and family to even question the issue of

vaccines in

> children. I have read Neil Z. , Cave and numerous

other

> books and websites on the issues and am leaning towards not

vaccinating.

> However, I am not sure my DH would join me in the bandwagon. We

have a 3

> month old that we have delayed vaccinations for a year till we

research this

> further. He has already seen Dr.Teripenny (sp) video. My question

to this

> group is

> 1. How many of you have children that have never been vaccinated

and are

> still healthy??

> 2. We have family living all over the world including India,

Australia,

> Europe and China! If we travel to visit them, should we consider

> vaccinations and how many people in this group have travelled over

the world

> without vaccinating their children??

>