New to this group

[Guest guest]

Welcome to our group! I know you will find lots of great info here, and

meet some great people.

Sharon

Mom to , (11, DS) and , (7)

Pawleys Island, South Carolina

new to this group

> Hi, I am new to this and I live in land with my husband and 11

> year old twins michael(DS) and Michele. Looking forward to sharing

> experiences with you all.

> Donna

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

Hello Donna welcome to the group! My name is Davina and i'm from land

also. I have three kids, Kyron 10; Kyrell 7 mds; Kierra 5

>From: Donna Helinski <donnahelinski@...>

> < >

>Subject: new to this group

>Date: Tue, 15 Apr 2003 10:08:59 -0400

>

>Hi, I am new to this and I live in land with my husband and 11

>year old twins michael(DS) and Michele. Looking forward to sharing

>experiences with you all.

>Donna

>

_________________________________________________________________

MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*.

http://join.msn.com/?page=features/virus

[Guest guest]

I'm sure it was an info about life lift. That's where I got the name to

look it up. I've seen it several times late at night. I live in Kentucky. I

think there were 3 video tapes, a measuring tape, and a bar with a bungee

cord type thing so you could do lifts. She mentioned reflexology as part of

it too (whatever that is). And it was Rashelle on the infomercial. Is body

flex made by her too? If so then maybe they just called it life lift but it

was body flex. I don't know. But, it was $40 (after the $20 rebate) plus

shipping. I went to the site and I don't see the special that they showed

on TV. They just have it where you have to buy each tape individually on

there.

I do have another question...do you REALLY lose weight using this? I'm not

concerned about inches (I know you lose if you lose weight). I just want to

see the darn scale MOVE!! Do you have to do additional exercise with this

program to lose? I'm already watching my diet. As I said before, I'm on

adipex (diet pills). but, I still can't seem to lose weight even though I'm

active. I guess I'm just not active enough. Thanks

Alisha

Message: 4 From: " Clem " <rdc@...>

Subject: Re: Re: New to this group.

Hi Alisha, are you sure you saw an info for LL? I would suggest going to

her site at www.lifelift.com because I don't remember any of her videos

being that much. Her site will tell you alot about LL and I think really

help you. And we will try to help you in any way we can.

Love,

Message: 9 From: stevku@...

Subject: Re: Re: New to this group.

Hi Alisha,

Where do you live? I've never seen a LL infomercial. How many tapes were

involved? Did they use a body exercise bar? Could it have been Body Flex

instead of Life Lift?

Love. Liz

[Guest guest]

Hi Bridgette,

I can tell you of our experience only. Hopefully, as this listserve gets bigger more info can be shared.

Olivia was never in any pain due to the cast. Sometimes she would say that her hips hurt a little. She would sit down for 5 minutes, and she was fine.

About diapering. This will probably be tricky, but maintainable. We must first see how low the cast is. I would definately share your concern with the doc that is applying the cast. Inform him that you realize that the cast must be low to attain maximum correction, but if it is too low and gets soiled on everyday the cast will have to be removed to prevent skin breakdown. ( Then it will be a while before another can be applied)

Believe me, this is a valid concern..One he may not have thought of. So bring it to his attention before the cast is applied. Remember, this is all new to him as well.

Olivias cast was always low, and we always kept it clean. If it does get soiled on, you must wash it as best you bcan without getting it too wet. Then a blow dryer (on low) always helped dry the cast.

Bridgette, I know this can be overwhelming. I will help you guys get through it, I promise. Lets see what the cast looks like, and go from there.

Sincerely,

ps, thanks for joining the list.

[Guest guest]

Welcome. As you will see we are interested n your detailed story about how you were first Dx, what problems you had before, etc. You cannot give us too much detail.

I would go the American Soc. of HTN and see if there is a board certified HTNologist there.

I think I know of someone there who does this but will need to look up. Is there a branch of the Univ. of TX there with a medical school? May have it confused with San .

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

I was refered to my cardiologist by a dermatologist who noticed

something with my lower legs that he thought was probably due to poor

circulation. The cardiologist had a doppler study done of my

circulation as well as some blood tests. The circulation study came

back OK, but the blood test showed that my potassium level was quite

low.

The cardiologist refered me to the local endocronologist who did

several tests which I have forgotted exactly what they were. One test

the put me in ICU and on an IV of saline at the rate of a liter per

hour and took regular blood samples. They also did an MRI which they

thought showed a spot? growth? on one of my adrinal glands. The

endocronologist put me on KDur and aldactone and refered me to a

surgeon to remove that adrenal gland, but from second thoughts by

both doctors they wanted to send me to Mayo Clinic in Rochaester to

have the test done to insure that only one of the glands was putting

out too much aldosterone.

Upon arrival at Mayo the doctor informed me they could not do the

test because I was already on aldactone and that I would have to come

back home and get off of the aldactone for six weeks then return for

the test. Once they performed the test it showed that both adrenal

glands were putting out too much aldosterone.

The doctors at Mayo said the spot on the adrenal gland that showed up

on the MRI was nothing to be concerned about and put me on

spironolactone, KDur and medication for blood pressure. I am taking

25 mg spironolactone twice a day and 40 MEq of Potassium in the

morning and 20 MEq at night and I can't remember all the different

blood pressure medications they have tried on me, but I am now taking

Avapro 300 mg once a day, Accupril 25 mg once a day and recently

Toporal XL 20 mg once a day was added.

I lost confidence in the local endocronologist after he put me on

aldactone and then sent me to Rochester for the test that I couldn't

have till I got off of the aldactone. It seems to me he would either

know that I couldn't get the test while on aldactone or would have

found out what the test requirements were before sending me. It cost

me in time, money and vacation to make the two trips. Because of this

I have not seen an endocronologist since 1999 and have relied on my

gp doctor and cardiologist for monitoring my condition and

prescribing my medications.

The reason I was seeing a cardiologist was due to a heart attack in

1994 that was not discovered until 1995. The damage was due to a

blockage of a branch of the right coranary artery, suspected to be

caused by a clot as the heart showed no plaque and my cholesterol was

borderline (210).

When I was first diagnosed with this, spironolactone was the only

medication being used (that I know of). Now I am seeing things here

that I have not heard of, Amiloride? and Inspiro? What is the

difference between these three drugs?

UTEP is in El Paso but I do not know if they have a medical school

there or not.

> Welcome. As you will see we are interested n your detailed story

about how

> you were first Dx, what problems you had before, etc. You cannot

give us too

> much detail.

>

> I would go the American Soc. of HTN and see if there is a board

certified

> HTNologist there.

>

> I think I know of someone there who does this but will need to look

up. Is

> there a branch of the Univ. of TX there with a medical school?

May have it

> confused with San .

>

>

>

> Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

> Clinical Professor of Medicine and Epidemiology

> Director, Hypertension Diagnosis and Treatment Center

> Board Certified in Internal Medicine, Geriatrics and Hypertension

>

> Published over 220 scientific papers, book chapters and 220

abstracts in the

> area of high blood pressure epidemiology, physiology, endocrinology

> measurement, treatment and how to detect curable causes.

> Listed in Best Doctors in America

> Specializing in Difficult to Control High Blood Pressure and the

History and

> Physiology of High Blood pressure in the African Diaspora

[Guest guest]

In a message dated 1/4/05 17:05:46, dp@... writes:

I want to say something here about surgery.   The big guy at UCSF is

Wan Duh, and he told me that even when they take out the gland or

glands (leaving you addisonian), there is still only about a 40% chance

it will cure the disease.  Reason : "embryonic tissues" from the glands

may be spread throughout your body and creating the hormones, and they

can't find those.  I sure wish someone had told me that before my first

surgery.  My tumor was only 1cm.

I have never heard this story. I would like to see the publication in man that docuements this.

I think it arises when the Dx is inocrrect and both adrnals are taken out and the BP does not go away. In my experience in at least 50 caese the BP is always better. It is more difficult when both are out but better.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

I will defer to Dr Grim, but can say that ameloride is a mild diuretic

second, and an aldosterone supressor first. It was used for my case

because fewer side effects than aldactone. But it seems weaker in

suppressing aldosterone too. Now that my aldosterone ratio is

climbing, I am going to try aldactone on top of 7 other meds, including

ameloride and hopefully prune those down.

Inspra is a drug so new there isn't much physician experience on how to

use it, but it has fewer side effects than aldactone, and some in here

swear by it. I tried it once and had a bad reaction, maybe because of

the ameloride contra-indication, but haven't tried again. Invented for

congestive heart failure, it does not seem to be selling well, although

it is used by some for BP control via aldosterone supression. It looks

like more people have bilateral hyperplasic aldosteronism than they

thought, even those who ALSO have the Conn's tumor. I had that, and

had my right adrenal out, but the condition kept going, albeit building

slowly.

I want to say something here about surgery. The big guy at UCSF is

Kwan Duh, and he told me that even when they take out the gland or

glands (leaving you addisonian), there is still only about a 40% chance

it will cure the disease. Reason : " embryonic tissues " from the glands

may be spread throughout your body and creating the hormones, and they

can't find those. I sure wish someone had told me that before my first

surgery. My tumor was only 1cm.

It also looks like more people have this generally than was previously

thought, so inspra (eplerenone) should be getting more use, but I think

most doctors are afraid to use something new, and would rather stick to

knowns. Makes sense.

What doesn't make sense is the way the FDA has evolved into a drug

approval-for-sale agency, losing their monitoring for efficacy and

safety function to that. That's apparently why people are so mad at

them--it makes it look like they are a wing of the pharmaceutical

companies'sales programs instead of a protector of patients. In the

wake of the Vioxx scandal, maybe it will change.

I wish I could be more help, but this is a little of what I have

learned.

P

On Jan 4, 2005, at 7:14 AM, rcj@... wrote:

>

>

> I was refered to my cardiologist by a dermatologist who noticed

> something with my lower legs that he thought was probably due to poor

> circulation. The cardiologist had a doppler study done of my

> circulation as well as some blood tests. The circulation study came

> back OK, but the blood test showed that my potassium level was quite

> low.

>

> The cardiologist refered me to the local endocronologist who did

> several tests which I have forgotted exactly what they were. One test

> the put me in ICU and on an IV of saline at the rate of a liter per

> hour and took regular blood samples. They also did an MRI which they

> thought showed a spot? growth? on one of my adrinal glands. The

> endocronologist put me on KDur and aldactone and refered me to a

> surgeon to remove that adrenal gland, but from second thoughts by

> both doctors they wanted to send me to Mayo Clinic in Rochaester to

> have the test done to insure that only one of the glands was putting

> out too much aldosterone.

>

> Upon arrival at Mayo the doctor informed me they could not do the

> test because I was already on aldactone and that I would have to come

> back home and get off of the aldactone for six weeks then return for

> the test. Once they performed the test it showed that both adrenal

> glands were putting out too much aldosterone.

>

> The doctors at Mayo said the spot on the adrenal gland that showed up

> on the MRI was nothing to be concerned about and put me on

> spironolactone, KDur and medication for blood pressure. I am taking

> 25 mg spironolactone twice a day and 40 MEq of Potassium in the

> morning and 20 MEq at night and I can't remember all the different

> blood pressure medications they have tried on me, but I am now taking

> Avapro 300 mg once a day, Accupril 25 mg once a day and recently

> Toporal XL 20 mg once a day was added.

>

> I lost confidence in the local endocronologist after he put me on

> aldactone and then sent me to Rochester for the test that I couldn't

> have till I got off of the aldactone. It seems to me he would either

> know that I couldn't get the test while on aldactone or would have

> found out what the test requirements were before sending me. It cost

> me in time, money and vacation to make the two trips. Because of this

> I have not seen an endocronologist since 1999 and have relied on my

> gp doctor and cardiologist for monitoring my condition and

> prescribing my medications.

>

> The reason I was seeing a cardiologist was due to a heart attack in

> 1994 that was not discovered until 1995. The damage was due to a

> blockage of a branch of the right coranary artery, suspected to be

> caused by a clot as the heart showed no plaque and my cholesterol was

> borderline (210).

>

> When I was first diagnosed with this, spironolactone was the only

> medication being used (that I know of). Now I am seeing things here

> that I have not heard of, Amiloride? and Inspiro? What is the

> difference between these three drugs?

>

> UTEP is in El Paso but I do not know if they have a medical school

> there or not.

>

>

>

>> Welcome. As you will see we are interested n your detailed story

> about how

>> you were first Dx, what problems you had before, etc. You cannot

> give us too

>> much detail.

>>

>> I would go the American Soc. of HTN and see if there is a board

> certified

>> HTNologist there.

>>

>> I think I know of someone there who does this but will need to look

> up. Is

>> there a branch of the Univ. of TX there with a medical school?

> May have it

>> confused with San .

>>

>>

>>

>> Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

>> Clinical Professor of Medicine and Epidemiology

>> Director, Hypertension Diagnosis and Treatment Center

>> Board Certified in Internal Medicine, Geriatrics and Hypertension

>>

>> Published over 220 scientific papers, book chapters and 220

> abstracts in the

>> area of high blood pressure epidemiology, physiology, endocrinology

>> measurement, treatment and how to detect curable causes.

>> Listed in Best Doctors in America

>> Specializing in Difficult to Control High Blood Pressure and the

> History and

>> Physiology of High Blood pressure in the African Diaspora

>

>

>

>

>

>

>

[Guest guest]

> I will defer to Dr Grim, but can say that ameloride is a mild

diuretic

> second, and an aldosterone supressor first.

Amelioride does nothing to aldosterone. It exchanges potassium for

sodium in the distal tubules of the kidney, which conserves

potassium while allowing sodium to pass. It's effect is independant

of aldosterone--it has been tested on addison's patients. It's

primary benefit is conserving potassium, since it has weak

natiuretic action.

Thanks,

Mike

[Guest guest]

Not directly, but endo depts at big U's like Washington U. St Louis and

UCSF use it for aldo suppression because its potassium sparing and mild

diuretic effects inhibit aldo production in the second stage of its

chemistry. It is relatively weak compared to spiro or eplerenone, but

has this secondary effect, well documented at those two institutions,

which have both studied it in large samples with longitudinal followup

previously. It is a " first step " if the A/R ratio is not above 48,

especially if renin is not suppressed as much as the mean. I cite

Clutter at W. U. St Louis, who directed this initial study.

It is the drug they used for me, and it worked in just this way for

over a year. But slowly, my ratio has climbed again. On to spiro.

Dave

On Jan 7, 2005, at 12:59 AM, lord_mike_the_great wrote:

>

>

>

>> I will defer to Dr Grim, but can say that ameloride is a mild

> diuretic

>> second, and an aldosterone supressor first.

>

> Amelioride does nothing to aldosterone. It exchanges potassium for

> sodium in the distal tubules of the kidney, which conserves

> potassium while allowing sodium to pass. It's effect is independant

> of aldosterone--it has been tested on addison's patients. It's

> primary benefit is conserving potassium, since it has weak

> natiuretic action.

>

> Thanks,

>

> Mike

>

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 1/7/2005 2:55:02 PM Eastern Standard Time, " Molly & Co. "

<dp@...> writes:

>

>Not directly, but endo depts at big U's like Washington U. St Louis and

>UCSF use it for aldo suppression because its potassium sparing and mild

>diuretic effects inhibit aldo production in the second stage of its

>chemistry.  

It does not suppress aldo. Indeed as it helps correct the K aldo may go up.

Spiro/Inspra makes more physiological sense for low renin and not low aldo-as I

have been saying for 30 years!

It is relatively weak compared to spiro or eplerenone, but

>has this secondary effect, well documented at those two institutions,

>which have both studied it in large samples with longitudinal followup

>previously.  It is a " first step " if the A/R ratio is not above 48,

>especially if renin is not suppressed as much as the mean.  I cite

> Clutter at W. U. St Louis, who directed this initial study.

>

>It is the drug they used for me, and it worked in just this way for

>over a year.   But slowly, my ratio has climbed again.  On to spiro.

>

>Dave

>

>On Jan 7, 2005, at 12:59 AM, lord_mike_the_great wrote:

>

>>

>>

>>

>>> I will defer to Dr Grim, but can say that ameloride is a mild

>> diuretic

>>> second, and an aldosterone supressor first.

>>

>> Amelioride does nothing to aldosterone.  It exchanges potassium for

>> sodium in the distal tubules of the kidney, which conserves

>> potassium while allowing sodium to pass.  It's effect is independant

>> of aldosterone--it has been tested on addison's patients.  It's

>> primary benefit is conserving potassium, since it has weak

>> natiuretic action.

>>

>> Thanks,

>>

>> Mike

>>

>>

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

In a message dated 1/10/2005 11:53:47 AM Eastern Standard Time,

eyefixr@... writes:

(www.askafavor.com my old website- it's still

up- but not running)

~~~~~~~~~~~~~~~~~~~~~

Welcome, Barbara! I saw your candles and they are wonderful. When I went

to the Letchworth Art Fest. (whatever it's called), someone's booth reminded

me of your candles. So realistic!

Glad to have you here as a soaper, too. :-)

Beth

[Guest guest]

Hi Barbara,

Welcome to the group, I live in buffalo. enjoy lots of good info on this group.

[Guest guest]

Barbara Welcome! Im Shaye, co-listmum. I live just East ofRochester.

Been soaping for 7 or so years and also enjoy painting and beading and

making other bath and body products.

I am married with two girls ages 11 and 14 (aint it fun?).

Shaye

New to this group

Hello all!

I'm Barbara. I live in AMherst. Married with 3 kids and one on the

way ( -step son, 12- cheyenne ,12- Sydney, 2). I am an all

out crafter, doing everything once or twice to decide if it's for

me. I am a master knitter. I sew. I do yo-yo quilts. I made

candlees for years. (www.askafavor.com my old website- it's still

up- but not running) Soaps are something I enjoy. Been working on

a baby line. Use to do shows but my partner backed out so haven't

in a year or so.

Look forward to all your creative ideas and swaps.

Oh, I thank Jeanine for introducing me into the group!

Barbara

[Guest guest]

Hi Barbara & welcome to the group!

I'm Colleen, co-list mom. I've been soaping for 5 years and mainly do

mp, but have done cp for 1 year. I live in SC, am married, and have a

9yr old son & 5yr old daughter.

This is a very friendly & helpful group. I hope you enjoy it here!

Colleen

Handcrafted & Decorative Soap

http://www.countrymeadowcreations.com

[Guest guest]

Hi Barbara,

Welcome to the group. Just looked at your candles...they are beautiful!

I live in Orange County, in Middletown. Was in Monroe, but we just moved.

Anyhoo, you will love this group!

Peace,

Deanna

~*~*~*~*~*~*~*~*~*~

OC Soap Co.

www.ocsoapco.com

~*~*~*~*~*~*~*~*~*~

[Guest guest]

Hi, Barbara! I'm pregnant with our first child - congratulations to you on

your child on the way! I'm nne, 29, and living in the Albany area.

Welcome to our list!

~nne

[Guest guest]

Hi Barbara

Here's another " welcome to our group " . I'm and live just east of

Utica. I only do M & P soaping but other toiletry items as well. Your

candles are gorgeous!! It sounds like you've got your hands full with

all the crafting that you do and KIDS besides.....wow!!

New to this group

Hello all!

I'm Barbara. I live in AMherst. Married with 3 kids and one on the

way ( -step son, 12- cheyenne ,12- Sydney, 2). I am an all

out crafter, doing everything once or twice to decide if it's for

me. I am a master knitter. I sew. I do yo-yo quilts. I made

candlees for years. (www.askafavor.com my old website- it's still

up- but not running) Soaps are something I enjoy. Been working on

a baby line. Use to do shows but my partner backed out so haven't

in a year or so.

Look forward to all your creative ideas and swaps.

Oh, I thank Jeanine for introducing me into the group!

Barbara

[Guest guest]

Welcome Barbara,

You find this list is very helpful and our members have such a huge

wealth of information and areas of expertise. Lots of us are here

just don't post that much so if you need anything just speak up.

Good luck with your new craft !

Debra

Syracuse

>

> Hello all!

>

> I'm Barbara. I live in AMherst. Married with 3 kids and one on

the

[Guest guest]

Hi Tina,

In what city do you work?

-Lenny

>

> Hi I just found out about this group so I joined (whats one more to the

> list of autism groups :-) ) I am reading Evidence of Harm now and it

> is amazing. I love reading it at work where people are like " what's

> this? " Great segway into my favorite subject of Thimerisol/autism

> connection. I work in a hospital as an RN and sometimes doctors are

> actually interested in what I have to say on the topic (I am like an

> expert at this point) Whether or not they listen or believe me is

> another issue. Some of them are my friends and I think they are just

> being nice when they act curious on this topic. I get a more positive

> response from the other nurses.

>

> Tina

[Guest guest]

Eastern Long Island

Hi Tina,

In what city do you work?

-Lenny

>

> Hi I just found out about this group so I joined (whats one more to the

> list of autism groups :-) ) I am reading Evidence of Harm now and it

> is amazing. I love reading it at work where people are like " what's

> this? " Great segway into my favorite subject of Thimerisol/autism

> connection. I work in a hospital as an RN and sometimes doctors are

> actually interested in what I have to say on the topic (I am like an

> expert at this point) Whether or not they listen or believe me is

> another issue. Some of them are my friends and I think they are just

> being nice when they act curious on this topic. I get a more positive

> response from the other nurses.

>

> Tina

[Guest guest]

Hi Jenn and welcome to a fantastic group of really supportive moms and dads.

There is so much that goes along with a diagnosis and it can all be scary and

intimidating to say the very least. Where do you live? You will have a lot of

testing to go through in the near future to determine what type of scoli Brenna

has and what her best options for treatment are. In the mean time, if you

haven't already, I would suggest you read the ISOP web site in its entirety and

request a video from . She is the group moderator and founder of ISOP

(Infantile Scoliosis Outreach Program). While you're at the web site, you can

check out my daughter's story. Please feel free to ask any questions and we'll

try our best to answer them. Also check out the files section for CASTS, here

you will find a lot of the research has been done for you. I wish you and your

family the very best. If you would just like to talk, e-mail me your #

privately and I will give you a ring.

Jen

http://www.infantilescoliosis.org/madisons_story.htm

mjgcj <mjgcj@...> wrote:

Hello to all...I just wanted to introduce myself before trying to

get to know all of you better by reading through previous posts. My

name is , I am married to , and I am a SAHM of

4...Gabe, age 5, Caleb, age 4, Jonah, age 2 and Brenna, age 13

months. Brenna was referred to a program called Birth to Three by

her ped due to developmental delay (not crawling, not talking, etc.)

As the Physical Therapist was evaluating her, she noticed Brenna

tended to slant when sitting so we took her back to the ped who said

he saw nothing. One month later we were back in because it was very

obvious that there was something going on. We got set up with a

peds neurologist and a peds orthopedist to see exactly what is going

on, but we don't see either dr. until August. Our Dr. ordered an x-

ray which showed a 22 degree curve. I am here because I am so

frustrated trying to find information about infantile scoliosis,

most sights have a brief little blurb and that's it. I don't know

what sorts of delays (if any) it can cause, how this affects her

growth (at 13 months old, she weighs a whopping 16lb. 12 oz and is

27 inches short) and any info I do find usually contradicts

something one of her various " people " tell me or it contradicts

something else I have read. I came across this sight and I am

hoping to better educate myself about infantile scoliosis. I am

scared, worried but hopeful...I am so glad I found this site.

Jenn

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

Groups are talking. We’re listening. Check out the handy changes to

Groups.

[Guest guest]

Hello Jenn. Welcome to CAST!

What is the definition of SAHM?

You have definately found the best place to get info on progressive infantile

scoliosis. Plaese read www.infantilescoliosis.org in its entirety, when you get

a chance. Also, like Jenn S. recommended, go to the FILES section of CAST, and

read-read-read. The most important article to read at this point would be

" Using growth as a Corrective Force in the Treatment of Progressive Infantile

Scoliosis " . This medical journal was published in Sept. 05, and is an

invaluable tool in learning the principles behind early treatment.

I think its fabulous that you are doing research on this condition, right

now....Instead, of waiting til' August.

Its essential that Brenna has an MRI of her spine to rule out any structural

abnormalities (congenital scoliosis). If its determined that she indeed has

infantile (non structural) than you need to find out if its of the progressive

type. Please read the article on the RVAD. This is a measuring technique that

will determine if the scoliosis is progressive, or not. The RVAD is about 80%

accurate.

May I also recommend that you obtain the DVD " A New Direction " . This can be

purchased through the website, or e-mail me direct, and I will toss one in the

mail today. This DVD will explain the early treatment process developed by Dr.

Min Mehta, a world renowned orthopaedic surgeon from the Royal National

Orthopaedic Hospital in Stanmore, and London. She has straightened over 100

infants with the early treatment process, followed their progress for 10 years,

and they remain straight. Never having to undergo premature surgical

intervention.

Whetever type of scoliosis Brenna has, this is a great place for info. Again,

welcome to the group.

Sincerely,

HRH

()

New to this group

Hello to all...I just wanted to introduce myself before trying to

get to know all of you better by reading through previous posts. My

name is , I am married to , and I am a SAHM of

4...Gabe, age 5, Caleb, age 4, Jonah, age 2 and Brenna, age 13

months. Brenna was referred to a program called Birth to Three by

her ped due to developmental delay (not crawling, not talking, etc.)

As the Physical Therapist was evaluating her, she noticed Brenna

tended to slant when sitting so we took her back to the ped who said

he saw nothing. One month later we were back in because it was very

obvious that there was something going on. We got set up with a

peds neurologist and a peds orthopedist to see exactly what is going

on, but we don't see either dr. until August. Our Dr. ordered an x-

ray which showed a 22 degree curve. I am here because I am so

frustrated trying to find information about infantile scoliosis,

most sights have a brief little blurb and that's it. I don't know

what sorts of delays (if any) it can cause, how this affects her

growth (at 13 months old, she weighs a whopping 16lb. 12 oz and is

27 inches short) and any info I do find usually contradicts

something one of her various " people " tell me or it contradicts

something else I have read. I came across this sight and I am

hoping to better educate myself about infantile scoliosis. I am

scared, worried but hopeful...I am so glad I found this site.

Jenn

[Guest guest]

stay at home mom

heather hyatt <heather@...> wrote:

Hello Jenn. Welcome to CAST!

What is the definition of SAHM?

You have definately found the best place to get info on progressive infantile

scoliosis. Plaese read www.infantilescoliosis.org in its entirety, when you get

a chance. Also, like Jenn S. recommended, go to the FILES section of CAST, and

read-read-read. The most important article to read at this point would be " Using

growth as a Corrective Force in the Treatment of Progressive Infantile

Scoliosis " . This medical journal was published in Sept. 05, and is an invaluable

tool in learning the principles behind early treatment.

I think its fabulous that you are doing research on this condition, right

now....Instead, of waiting til' August.

Its essential that Brenna has an MRI of her spine to rule out any structural

abnormalities (congenital scoliosis). If its determined that she indeed has

infantile (non structural) than you need to find out if its of the progressive

type. Please read the article on the RVAD. This is a measuring technique that

will determine if the scoliosis is progressive, or not. The RVAD is about 80%

accurate.

May I also recommend that you obtain the DVD " A New Direction " . This can be

purchased through the website, or e-mail me direct, and I will toss one in the

mail today. This DVD will explain the early treatment process developed by Dr.

Min Mehta, a world renowned orthopaedic surgeon from the Royal National

Orthopaedic Hospital in Stanmore, and London. She has straightened over 100

infants with the early treatment process, followed their progress for 10 years,

and they remain straight. Never having to undergo premature surgical

intervention.

Whetever type of scoliosis Brenna has, this is a great place for info. Again,

welcome to the group.

Sincerely,

HRH

()

New to this group

Hello to all...I just wanted to introduce myself before trying to

get to know all of you better by reading through previous posts. My

name is , I am married to , and I am a SAHM of

4...Gabe, age 5, Caleb, age 4, Jonah, age 2 and Brenna, age 13

months. Brenna was referred to a program called Birth to Three by

her ped due to developmental delay (not crawling, not talking, etc.)

As the Physical Therapist was evaluating her, she noticed Brenna

tended to slant when sitting so we took her back to the ped who said

he saw nothing. One month later we were back in because it was very

obvious that there was something going on. We got set up with a

peds neurologist and a peds orthopedist to see exactly what is going

on, but we don't see either dr. until August. Our Dr. ordered an x-

ray which showed a 22 degree curve. I am here because I am so

frustrated trying to find information about infantile scoliosis,

most sights have a brief little blurb and that's it. I don't know

what sorts of delays (if any) it can cause, how this affects her

growth (at 13 months old, she weighs a whopping 16lb. 12 oz and is

27 inches short) and any info I do find usually contradicts

something one of her various " people " tell me or it contradicts

something else I have read. I came across this sight and I am

hoping to better educate myself about infantile scoliosis. I am

scared, worried but hopeful...I am so glad I found this site.

Jenn

[Guest guest]

Hi ,

My name is too . My son also has infantile scoliosis which was

diagnosed at 6 months. The first step is to find out whether she has idiopathic

(no known cause) or congenital scoliosis (usually a known cause such as a

hemivertabrae for example). The MRI will determine what type she has and they

also use this to make sure the spinal cord is not tethered. If she ends up

being idiopathic, she may be a candidate for serial casting. There are two

places that offer this particular type of casting and they are the Shriners

Hospitals in Salt Lake City and the one in Erie, PA. Treatment is free which

is an added bonus.

If it ends up being congenital, there are some other mom's on here that can give

you more information on treatments such as VEPTR.

If you want to chat via email at all, feel free to email me at

noellesmommy@....

Noelle (12-2-01)

Ian (8-15-04)

New to this group

Hello to all...I just wanted to introduce myself before trying to

get to know all of you better by reading through previous posts. My

name is , I am married to , and I am a SAHM of

4...Gabe, age 5, Caleb, age 4, Jonah, age 2 and Brenna, age 13

months. Brenna was referred to a program called Birth to Three by

her ped due to developmental delay (not crawling, not talking, etc.)

As the Physical Therapist was evaluating her, she noticed Brenna

tended to slant when sitting so we took her back to the ped who said

he saw nothing. One month later we were back in because it was very

obvious that there was something going on. We got set up with a

peds neurologist and a peds orthopedist to see exactly what is going

on, but we don't see either dr. until August. Our Dr. ordered an x-

ray which showed a 22 degree curve. I am here because I am so

frustrated trying to find information about infantile scoliosis,

most sights have a brief little blurb and that's it. I don't know

what sorts of delays (if any) it can cause, how this affects her

growth (at 13 months old, she weighs a whopping 16lb. 12 oz and is

27 inches short) and any info I do find usually contradicts

something one of her various " people " tell me or it contradicts

something else I have read. I came across this sight and I am

hoping to better educate myself about infantile scoliosis. I am

scared, worried but hopeful...I am so glad I found this site.

Jenn