Register at www.sbaa.org and SAVE $60

We're Extending the Low "Early Bird" Registration
Rates for SBA's Annual Conference through JUNE 15!

You can stretch your travel budget a little further!

Reduced rates are just one good reason to go to SBA's
Annual Conference in Atlanta on June 25-28!

Register for SBA's Annual Conference.

Need some more good reasons? There are plenty!

Unparalleled educational sessions. Whether you're a
parent or an adult living with Spina Bifida, you'll
learn the latest medical advances and practical
recommendations to improve your quality of life.

Kids!Camp where kids with Spina Bifida can just be
kids. This year there will be basketball, "mad
science," rock climbing, arts and crafts AND a trip to
the fabulous Georgia Aquarium.

A day-long program just for adults with Spina Bifida.
All day Sunday, June 25 will be dedicated to the
challenges and joys of living with Spina Bifida. And
don't miss Adult Casino Night on Tuesday, June 27!

Atlanta is a fun-filled city with lots to do for young
and old. The CNN Center, the Atlanta Braves, the World
of Coca-Cola, world-class shopping and much, much
more.

Sign up today and save $60 on every person who
registers to attend!

Learn more about SBA’s 33nd Annual Conference.

This offer is only good until June 15!

Register at www.sbaa.org

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NATIONAL SURVEY OF THE SPINA BIFIDA COMMUNITY

The National Survey of the Spina Bifida Community is a
biannual project of the Spina Bifida Association
(SBA).  SBA analyzes the findings to help make the
case for educational campaigns and ongoing
programmatic efforts.

This online survey only takes a few minutes.  To take
the survey go to http://66.34.105.118/  or visit
www.sbaa.org “What’s New?” section.


>>Please forward this request to anyone in the Spina
Bifida Community and help your voices be heard!


>>To involve the Hispanic Community, we have included
the Spanish version of the request.  Please forward.
Thank you!!


ENCUESTA DE ESPINA BÍFIDA - PARA ADULTOS Y FAMILIAS
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida, la cual nos ayudará a
desarrollar una variedad de programas para usted. Sus
respuestas serán confidenciales. Oprima aquí:
http://66.34.105.118/ ¡Gracias!


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<><><><><><><><><><><><><><><><><><><><><><>
NATIONAL SURVEY OF THE SPINA BIFIDA COMMUNITY/
ENCUESTA DE ESPINA BÍFIDA - PARA ADULTOS Y FAMILIAS
>>Take a few minutes to complete the survey online.
>>Visit: http://66.34.105.118/
<><><><><><><><><><><><><><><><><><><><><><>

The National Survey of the Spina Bifida Community, a
biannual project of the Spina Bifida Association
(SBA).  SBA analyzes the findings to help make the
case for educational campaigns and ongoing
programmatic efforts.  Please pass this announcement
along and let your voices be heard!

Thanks for your time!


Encuesta de Espina Bífida - para adultos y familias
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida, la cual nos ayudará a
desarrollar una variedad de programas para usted. Sus
respuestas serán confidenciales. ¡Gracias!

Thanks! ¡Gracias!

Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Web:  www.sbaa.org


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Hi!

We are new to the group. We are considering a move to Asheville, NC in
the future and were wondering about resources for our 7yo daughter, who
has SB (L4-S3/VP Shunt/HKAFO's).

Thanks!

Al Lyons

Our pediatrician recomends against solids for for the first 6 months
for all kids to reduce the likelihood of developing food alergies. (2
years for foods like peanuts and strawberries) The extra bonus was
that the milk stools pass much more easily reducing the problems at
the beginning. Once we started solids the Dr at SB clinic recommended
adding sorbitol containing juices like prune and apple. He also
suggested benefiber. There is also a prescription softener that we
used for a while.

If you are getting bad diaper rash bleeding from the constant stools,
I can suggest using a blow dryer to dry the bottom between changes and
getting a good diaper rash cream. We found a store brand that has 40%
zinc as opposed to the 20% in the well known brands. These two things
helped reduce the rashing a lot, though it didn't permanently clear
until we started a cath scedule. I don't have experience with bleeding
from a prolapse.

As for foods related to latex allergy, there are no studies showing
foods increase the riskof latex allergy. However some people w/ latex
allergy also have reactions to those foods listed.

Congratulation on your baby boy,
Adam

hi all ,I have started a site  http://www.outofstress.com
  which deals all aspects of stress and recovery.Our objective is to
  help peoplethose who are suffering from stress ,anxiety and
  depression.If any of you have stress related stories,
  comments,tips,sugggestion post webmaster@... site
  covers a junk traffic of 7000/month.You can get a good publicity as
  well.....bye..kamal &mak...webmaster

  STRESS STORIES
  http://www.outofstress.com/stress-stories/steps-to-deal-with-stress.php
http://www.outofstress.com/stress-stories/simon-wife-stress.php

Hi,
   I have a son that also has spina bifida, and a VP Shunt. He will be 5 in May
of this year. He did have problems with his bowels also. His doctor prescribed
him a medication that keeps his stools soft. It's called Glycolax. It's a powder
that I put in his drink every morning.  It has no taste so he doesn't even know
that it is in his drink.
   I hope this information may help.
   Amy of Gastonia
Stormie <counselorwillingham@...> wrote:
   Hi,
I have a beautiful son with spina bifida, he has a VP that has
already malfunctioned.  He has had to endure 5 surgeries in his
short life.  But despite all he flourishes and is a healthy, loving
good natured baby.  He no longer requires catheterization, and has
no symptoms of the Chiari malformation thus far.  I have a question
though that maybe one of you has an answer for.  Well actually 2
questions.  First, my sons rectum constantly protrudes and bleeds.
The doctor said it's because his muscle is lax and that it should
get better with time. They gave me some ointment to apply to numb it
but it looks so painful and he constantly stools and crys when he
does.  Have any of you dealt with this and can offer any advise to
make bowel movements more comfortable for him?  Also, what foods
must I keep away from him becuse of his potential to develop Latex
allergies?  I fed him bananas yesterday, he loved them, but I read
today he could eventually be allergic to them.  I have three older
children ( 2 girls 12 and 11 and another son 7), but it has been so
long it is almost like starting over and with his condition it is
even more new for me.  I would welcome any advise.  I treat him like
any other baby. He has no ability to move his legs from the thigh
down but outside that..he is just my sweet baby boy whom we all
adore.





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         Spina bifida

---------------------------------
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[Non-text portions of this message have been removed]

Hi!  Have you contacted the support group in your area?
I am Susan and I have a 10 yr old daughter with SB.  We live in the
Winston-Salem area.
The prolapsed rectum isn't uncommon with SB.  Keeping the bowel movements as
soft as possible can help keep the rectum from "falling out".  It may get
better with time.  A few kids do require surgery for this.  The foods "high"
on the latex precautions list include avocado, bananas, chestnuts, kiwi and
papaya.  Many doctors don't suggest limiting foods until an actual
sensitivity has been established.  However, others do.  It really is up to
you as a parent to decide what you want to do.  For babies, the only common
food would be bananas.  There are three levels of foods that are considered
similar in proteins to latex.  The high risk foods are mentioned above (not
sure if I missed any).  Level 2 (not as likely to cause cross-reactions)
include common foods such as tomatoes (which would include tomato
sauces--hard to avoid in baby "2nd" foods.
I am sorry you have had to deal with so many surgeries so early in his life.
I know how stressful that can be, especially dealing with postpartum
hormones as well!  It is great that you are looking for info on the web.
Let me know if I can help and if you are interested in more online support
groups for parents.
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Stormie
Sent: Sunday, March 19, 2006 4:55 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] I have a 7 week old son with sb


Hi,
I have a beautiful son with spina bifida, he has a VP that has
already malfunctioned.  He has had to endure 5 surgeries in his
short life.  But despite all he flourishes and is a healthy, loving
good natured baby.  He no longer requires catheterization, and has
no symptoms of the Chiari malformation thus far.  I have a question
though that maybe one of you has an answer for.  Well actually 2
questions.  First, my sons rectum constantly protrudes and bleeds.
The doctor said it's because his muscle is lax and that it should
get better with time. They gave me some ointment to apply to numb it
but it looks so painful and he constantly stools and crys when he
does.  Have any of you dealt with this and can offer any advise to
make bowel movements more comfortable for him?  Also, what foods
must I keep away from him becuse of his potential to develop Latex
allergies?  I fed him bananas yesterday, he loved them, but I read
today he could eventually be allergic to them.  I have three older
children ( 2 girls 12 and 11 and another son 7), but it has been so
long it is almost like starting over and with his condition it is
even more new for me.  I would welcome any advise.  I treat him like
any other baby. He has no ability to move his legs from the thigh
down but outside that..he is just my sweet baby boy whom we all
adore.





   _____

YAHOO! GROUPS LINKS



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on the web.


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<http://docs.yahoo.com/info/terms/> .


   _____




[Non-text portions of this message have been removed]

Hi,
  I have a beautiful son with spina bifida, he has a VP that has
already malfunctioned.  He has had to endure 5 surgeries in his
short life.  But despite all he flourishes and is a healthy, loving
good natured baby.  He no longer requires catheterization, and has
no symptoms of the Chiari malformation thus far.  I have a question
though that maybe one of you has an answer for.  Well actually 2
questions.  First, my sons rectum constantly protrudes and bleeds.
The doctor said it's because his muscle is lax and that it should
get better with time. They gave me some ointment to apply to numb it
but it looks so painful and he constantly stools and crys when he
does.  Have any of you dealt with this and can offer any advise to
make bowel movements more comfortable for him?  Also, what foods
must I keep away from him becuse of his potential to develop Latex
allergies?  I fed him bananas yesterday, he loved them, but I read
today he could eventually be allergic to them.  I have three older
children ( 2 girls 12 and 11 and another son 7), but it has been so
long it is almost like starting over and with his condition it is
even more new for me.  I would welcome any advise.  I treat him like
any other baby. He has no ability to move his legs from the thigh
down but outside that..he is just my sweet baby boy whom we all
adore.

Thanks to the generosity of Coloplast, a long term
sponsor of SBA, we are pleased to announce the
opportunity for you (and all in the Spina Bifida
Community) to enter to win a trip for 2 the 2006 Spina
Bifida Annual Conference to be held in Atlanta, GA
June 26-28, 2006.

To enter just go to:
http://www.sbaa.org/site/DocServer/coloplast_flyer.pdf

Please feel free to send this link on. GOOD LUCK

Regards,
Adriane

Adriane K. Griffen, MPH, CHES
Director, Public Health Programs
Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  (202) 944-3285, x 13  *  Fax: (202) 944-3295
Email: agriffen@...

_______________________________________
Make Plans to Attend SBA's Annual Conference
June 25 - 28, 2006 in Atlanta
Check sbaa.org for more information



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Hi
I have a 6 yr old girl with SB. We live in Chapel Hill.
Was wondering if anyone has any ideas/info on summer camps. We know
about Camp Carefree and Victory Junction - Sara's not old enough for
that one yet.
Thanks.
Nice to "meet" you all.
Laura

Cathie,

   Yes, my daughter's pediatrician prescribed the patch.

   My one thought regarding the endometrial ablation is to question if that is in
effect a form of sterilization.  With my daughter, this was not suggested. 
However, I would have serious concerns about her ability to carry a pregnancy to
term without risk of serious injury or complication due to the pregnancy.  By
the way, I am a nurse.  (This is of course a seperate concern from all of the
'Dad' worries that float around in my brain when discussing my 13 year old). 
She has a fairly high level neuro deficit--starting at her belly button down she
has no sensation or muscle control.

   For other young ladies where the option of a future pregnancy is reasonable, I
would think that a decision about an endometrial ablation probably should be
deferred.

   Don

cathie hill <teachyounguns@...> wrote:
   Thank you for your response. Did your family doctor prescribe this? Our Dr.
recommends endometrial ablation for our daughter to make it more reliable and
permanent. What do you think? - Cathie


----- Original Message -----
From: Donald Butler
To: sbaofnc@yahoogroups.com
Sent: 2/7/2006 2:49:39 PM
Subject: RE: [SBAofNC] Re: managing menstruation


Hello,

   My 13 yr old daughter recently started her menses.  We had discussed with
pediatrician previously.  There was no question that she would be able to manage
independently, so we've started using the birth control patch.  To stop
menstruation, we will skip the "rest" patch (that allows menstruation) and
continuously use the low dose hormone patch.  Having just started, can not
provide feedback on how effective it is.

   Certainly, depo is one option depending on how well it works.  It is something
where there can be break through spotting and not on any sort of predictable
interval.  Most women eventually stop spotting.

   We are in Eastern NC.

   Don

cathie hill <teachyounguns@...> wrote:
   Thank you for your response. I have gotten two different opinions from doctors
on what to do. Your response was very helpful.By the way, we live near Charlotte
too in Mooresville!! - Cathie and Marti


----- Original Message -----
From: prplbutterfly
To: sbaofnc@yahoogroups.com
Sent: 1/22/2006 8:53:20 PM
Subject: [SBAofNC] Re: managing menstruation


Dear Cathie,

I am a 32 year old female with SB and I stopped menstruation with a
Depo Provera shot the doctor administers every 13 weeks in his office.
My biggest problem with menstruation was not only the sanitary issues,
but the pain and being able to go about my day independently without
cramps keeping me down. So, we elected to go the Depo Provera route.
It stops the period to a little spotting in most people, but for me it
totally stopped it and I have been cramp free ever since. However, at
some point I'm going to have to go off of it because it's certainly
not normal to stop your natural period. And my mother began early
menopause in her late 30s, so the doctor things that around 35 we need
to stop it and get me back on a normal cycle to see when menopause
happens and how. I'm in NC, too, near Charlotte.

Hope this helps,

Monica Foster

--- In sbaofnc@yahoogroups.com, "cathiethird3" <teachyounguns@e...>
wrote:
>
> Our 18year old daughter with SB will be working at her first job and
> can not take care of her periods. Her doctor suggested methods to
stop
> it and we agree that she should have it stopped. She is unable to
> manage it on her own at all.  Has anyone ever done this with their
> daughters? And if so, how did you stop it? -Cathie/NC
>






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[Non-text portions of this message have been removed]



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[Non-text portions of this message have been removed]



   SPONSORED LINKS
         Spina bifida

---------------------------------
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     To unsubscribe from this group, send an email to:
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---------------------------------
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Bring photos to life! New PhotoMail  makes sharing a breeze.

[Non-text portions of this message have been removed]

Hi Monica,

So great to meet you (although online), because we have not had much contact
with other SB people. We are struggling with many issues surrounding SB and
wondering how to seal with them. So we would love to share more and learn
from your experience.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
prplbutterfly
Sent: Sunday, February 19, 2006 7:39 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Re: New Member, Mari Pederson


Hi, Mari and to the other adult in Charlotte area with spina bifida.
I'm also an adult in Charlotte with spina bifida. I'm a 32 year old
female, married, living in Charlotte. My paralysis is L3 and I'm a
wheelchair user. Would love to correspond and share experience.

Take care,

Monica


--- In sbaofnc@yahoogroups.com, jcfreak1984 <no_reply@...> wrote:
>
> Hello,
>
> My son, 7 y.o., has spina bifida. We just moved to NC from CA. I
am
> really interested in finding a support group for myself and my son
for
> the struggles we face with spina bifida. Does anyone have any
> suggestions?
>
> Mari
>
>
*********************************************************************
**
>
> Here's a link to the NC chapter of the SBAA:
>
> http://sbanc.home.mindspring.com
>
> On the left side of the page you'll see a link to local support
> groups. There are several listed by the general area you live in.
>
> Hope this helps.
>
> I'm an adult with Spina Bifida living in the Charlotte area of NC.
>







Yahoo! Groups Links

Hi, Mari and to the other adult in Charlotte area with spina bifida.
I'm also an adult in Charlotte with spina bifida. I'm a 32 year old
female, married, living in Charlotte. My paralysis is L3 and I'm a
wheelchair user. Would love to correspond and share experience.

Take care,

Monica


--- In sbaofnc@yahoogroups.com, jcfreak1984 <no_reply@...> wrote:
>
> Hello,
>
> My son, 7 y.o., has spina bifida. We just moved to NC from CA. I
am
> really interested in finding a support group for myself and my son
for
> the struggles we face with spina bifida. Does anyone have any
> suggestions?
>
> Mari
>
>
*********************************************************************
**
>
> Here's a link to the NC chapter of the SBAA:
>
> http://sbanc.home.mindspring.com
>
> On the left side of the page you'll see a link to local support
> groups. There are several listed by the general area you live in.
>
> Hope this helps.
>
> I'm an adult with Spina Bifida living in the Charlotte area of NC.
>

We are just outside Charlotte in Union county. I looked at the sight and see
there is a group for the Charlotte area. Thanks, I had seen that site a few
months ago and forgot about it. I'll try contacting them.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Susan Collins
Sent: Sunday, February 19, 2006 2:08 PM
To: sbaofnc@yahoogroups.com
Subject: RE: [SBAofNC] New Member

What area are you in?  You can see support group areas at www.sbanc.org
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Mari Pedersen
Sent: Saturday, February 18, 2006 11:30 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] New Member


Hello,

My son, 7 y.o., has spina bifida. We just moved to NC from CA. I am
really interested in finding a support group for myself and my son for
the struggles we face with spina bifida. Does anyone have any
suggestions?

Mari






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<http://groups.yahoo.com/gads?t=ms&k=Spina+bifida&w1=Spina+bifida&c=1&s=18&.
sig=vmAnASXs8SNmAU1G4zb1Fw> bifida

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   _____




[Non-text portions of this message have been removed]




Yahoo! Groups Links

What area are you in?  You can see support group areas at www.sbanc.org
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Mari Pedersen
Sent: Saturday, February 18, 2006 11:30 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] New Member


Hello,

My son, 7 y.o., has spina bifida. We just moved to NC from CA. I am
really interested in finding a support group for myself and my son for
the struggles we face with spina bifida. Does anyone have any
suggestions?

Mari






SPONSORED LINKS
Spina
<http://groups.yahoo.com/gads?t=ms&k=Spina+bifida&w1=Spina+bifida&c=1&s=18&.
sig=vmAnASXs8SNmAU1G4zb1Fw> bifida

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   _____




[Non-text portions of this message have been removed]

Hello group,

I also need to start looking for doctors, clinics, therapy and prosthetics
for my son. In CA we went to a spinabifida clinic where all the doctors came
to visit the patient on the clinic day, including pediatric urologist,
pediatric GI, rehab, pediatrician, etc. All of these doctors were very
knowledgeable of spinabifida. Is there anything like that in Charlotte area
or do I need to go to Raleigh/Durham?

Also, I am looking for a pediatric orthopedic surgeon for his scoliosis and
a regular pediatrician who will be knowledgeable of problems related to
spinabifida. It was easy at the clinic in CA because his whole chart had
everything in it in one place for all the doctors, but I'm not sure if we
will have doctors in different places here.

Does anyone have advice or suggestions?

Hello,

My son, 7 y.o., has spina bifida. We just moved to NC from CA. I am
really interested in finding a support group for myself and my son for
the struggles we face with spina bifida. Does anyone have any
suggestions?

Mari

***********************************************************************

Here's a link to the NC chapter of the SBAA:

http://sbanc.home.mindspring.com

On the left side of the page you'll see a link to local support
groups. There are several listed by the general area you live in.

Hope this helps.

I'm an adult with Spina Bifida living in the Charlotte area of NC.

Hello,

My son, 7 y.o., has spina bifida. We just moved to NC from CA. I am
really interested in finding a support group for myself and my son for
the struggles we face with spina bifida. Does anyone have any
suggestions?

Mari

Thank you for your response. Did your family doctor prescribe this? Our Dr.
recommends endometrial ablation for our daughter to make it more reliable and
permanent. What do you think? - Cathie


----- Original Message -----
From: Donald Butler
To: sbaofnc@yahoogroups.com
Sent: 2/7/2006 2:49:39 PM
Subject: RE: [SBAofNC] Re: managing menstruation


Hello,

   My 13 yr old daughter recently started her menses.  We had discussed with
pediatrician previously.  There was no question that she would be able to manage
independently, so we've started using the birth control patch.  To stop
menstruation, we will skip the "rest" patch (that allows menstruation) and
continuously use the low dose hormone patch.  Having just started, can not
provide feedback on how effective it is.

   Certainly, depo is one option depending on how well it works.  It is something
where there can be break through spotting and not on any sort of predictable
interval.  Most women eventually stop spotting.

   We are in Eastern NC.

   Don

cathie hill <teachyounguns@...> wrote:
   Thank you for your response. I have gotten two different opinions from doctors
on what to do. Your response was very helpful.By the way, we live near Charlotte
too in Mooresville!! - Cathie and Marti


----- Original Message -----
From: prplbutterfly
To: sbaofnc@yahoogroups.com
Sent: 1/22/2006 8:53:20 PM
Subject: [SBAofNC] Re: managing menstruation


Dear Cathie,

I am a 32 year old female with SB and I stopped menstruation with a
Depo Provera shot the doctor administers every 13 weeks in his office.
My biggest problem with menstruation was not only the sanitary issues,
but the pain and being able to go about my day independently without
cramps keeping me down. So, we elected to go the Depo Provera route.
It stops the period to a little spotting in most people, but for me it
totally stopped it and I have been cramp free ever since. However, at
some point I'm going to have to go off of it because it's certainly
not normal to stop your natural period. And my mother began early
menopause in her late 30s, so the doctor things that around 35 we need
to stop it and get me back on a normal cycle to see when menopause
happens and how. I'm in NC, too, near Charlotte.

Hope this helps,

Monica Foster

--- In sbaofnc@yahoogroups.com, "cathiethird3" <teachyounguns@e...>
wrote:
>
> Our 18year old daughter with SB will be working at her first job and
> can not take care of her periods. Her doctor suggested methods to
stop
> it and we agree that she should have it stopped. She is unable to
> manage it on her own at all.  Has anyone ever done this with their
> daughters? And if so, how did you stop it? -Cathie/NC
>






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





---------------------------------
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[Non-text portions of this message have been removed]



SPONSORED LINKS Spina bifida



YAHOO! GROUPS LINKS

  Visit your group "sbaofnc" on the web.

  To unsubscribe from this group, send an email to:
  sbaofnc-unsubscribe@yahoogroups.com

  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Non-text portions of this message have been removed]

Hello,

   My 13 yr old daughter recently started her menses.  We had discussed with
pediatrician previously.  There was no question that she would be able to manage
independently, so we've started using the birth control patch.  To stop
menstruation, we will skip the "rest" patch (that allows menstruation) and
continuously use the low dose hormone patch.  Having just started, can not
provide feedback on how effective it is.

   Certainly, depo is one option depending on how well it works.  It is something
where there can be break through spotting and not on any sort of predictable
interval.  Most women eventually stop spotting.

   We are in Eastern NC.

   Don

cathie hill <teachyounguns@...> wrote:
   Thank you for your response. I have gotten two different opinions from doctors
on what to do. Your response was very helpful.By the way, we live near Charlotte
too in Mooresville!! - Cathie and Marti


----- Original Message -----
From: prplbutterfly
To: sbaofnc@yahoogroups.com
Sent: 1/22/2006 8:53:20 PM
Subject: [SBAofNC] Re: managing menstruation


Dear Cathie,

I am a 32 year old female with SB and I stopped menstruation with a
Depo Provera shot the doctor administers every 13 weeks in his office.
My biggest problem with menstruation was not only the sanitary issues,
but the pain and being able to go about my day independently without
cramps keeping me down. So, we elected to go the Depo Provera route.
It stops the period to a little spotting in most people, but for me it
totally stopped it and I have been cramp free ever since. However, at
some point I'm going to have to go off of it because it's certainly
not normal to stop your natural period. And my mother began early
menopause in her late 30s, so the doctor things that around 35 we need
to stop it and get me back on a normal cycle to see when menopause
happens and how. I'm in NC, too, near Charlotte.

Hope this helps,

Monica Foster

--- In sbaofnc@yahoogroups.com, "cathiethird3" <teachyounguns@e...>
wrote:
>
> Our 18year old daughter with SB will be working at her first job and
> can not take care of her periods. Her doctor suggested methods to
stop
> it and we agree that she should have it stopped. She is unable to
> manage it on her own at all.  Has anyone ever done this with their
> daughters? And if so, how did you stop it? -Cathie/NC
>






SPONSORED LINKS Spina bifida



YAHOO! GROUPS LINKS

Visit your group "sbaofnc" on the web.

To unsubscribe from this group, send an email to:
sbaofnc-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Non-text portions of this message have been removed]



---------------------------------
   YAHOO! GROUPS LINKS


     Visit your group "sbaofnc" on the web.

     To unsubscribe from this group, send an email to:
  sbaofnc-unsubscribe@yahoogroups.com

     Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


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





---------------------------------
  Yahoo! Mail - Helps protect you from nasty viruses.

[Non-text portions of this message have been removed]

Thank you for your response. I have gotten two different opinions from doctors
on what to do. Your response was very helpful.By the way, we live near Charlotte
too in Mooresville!! - Cathie and Marti


----- Original Message -----
From: prplbutterfly
To: sbaofnc@yahoogroups.com
Sent: 1/22/2006 8:53:20 PM
Subject: [SBAofNC] Re: managing menstruation


Dear Cathie,

I am a 32 year old female with SB and I stopped menstruation with a
Depo Provera shot the doctor administers every 13 weeks in his office.
My biggest problem with menstruation was not only the sanitary issues,
but the pain and being able to go about my day independently without
cramps keeping me down. So, we elected to go the Depo Provera route.
It stops the period to a little spotting in most people, but for me it
totally stopped it and I have been cramp free ever since. However, at
some point I'm going to have to go off of it because it's certainly
not normal to stop your natural period. And my mother began early
menopause in her late 30s, so the doctor things that around 35 we need
to stop it and get me back on a normal cycle to see when menopause
happens and how. I'm in NC, too, near Charlotte.

Hope this helps,

Monica Foster

--- In sbaofnc@yahoogroups.com, "cathiethird3" <teachyounguns@e...>
wrote:
>
> Our 18year old daughter with SB will be working at her first job and
> can not take care of her periods. Her doctor suggested methods to
stop
> it and we agree that she should have it stopped. She is unable to
> manage it on her own at all.  Has anyone ever done this with their
> daughters? And if so, how did you stop it? -Cathie/NC
>






SPONSORED LINKS Spina bifida



YAHOO! GROUPS LINKS

  Visit your group "sbaofnc" on the web.

  To unsubscribe from this group, send an email to:
  sbaofnc-unsubscribe@yahoogroups.com

  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Non-text portions of this message have been removed]

Dear Cathie,

I am a 32 year old female with SB and I stopped menstruation with a
Depo Provera shot the doctor administers every 13 weeks in his office.
My biggest problem with menstruation was not only the sanitary issues,
but the pain and being able to go about my day independently without
cramps keeping me down. So, we elected to go the Depo Provera route.
It stops the period to a little spotting in most people, but for me it
totally stopped it and I have been cramp free ever since. However, at
some point I'm going to have to go off of it because it's certainly
not normal to stop your natural period. And my mother began early
menopause in her late 30s, so the doctor things that around 35 we need
to stop it and get me back on a normal cycle to see when menopause
happens and how. I'm in NC, too, near Charlotte.

Hope this helps,

Monica Foster

--- In sbaofnc@yahoogroups.com, "cathiethird3" <teachyounguns@e...>
wrote:
>
> Our 18year old daughter with SB will be working at her first job and
> can not take care of her periods. Her doctor suggested methods to
stop
> it and we agree that she should have it stopped. She is unable to
> manage it on her own at all.  Has anyone ever done this with their
> daughters? And if so, how did you stop it? -Cathie/NC
>

Our 18year old daughter with SB will be working at her first job and
can not take care of her periods. Her doctor suggested methods to stop
it and we agree that she should have it stopped. She is unable to
manage it on her own at all.  Has anyone ever done this with their
daughters? And if so, how did you stop it? -Cathie/NC

Hi my name is Michele and I just joined...my 1 and half year old son
has Spina Bifida.  He is the baby of 4 kids and he is an absolute joy!

Laura Ferguson has sent you an important action alert - read below for more
info, and take action at: http://www.thepetitionsite.com/takeaction/956710582

Hi Friends,

I have just read and signed the petition: "Tell The FDA To Take Accutane Off The
Market & To Help Stop Disabling Birth Defects in This Country!"

Please take a moment to read about this important ACCUTANE Drug Information that
has a huge impact on women and causing Disabling Birth Defects, and join me in
signing the petition. It takes just 30 seconds, but can truly make a difference.
Please sign here:

http://www.thepetitionsite.com/takeaction/956710582

Thanks!

------------------------------------
ThePetitionSite.com provides tools and empowers individuals to make a difference
and effect positive change through online activism. Get connected with the
causes you care about, take action to make the world a better place, and start
your own petition at http://www.ThePetitionSite.com!

ThePetitionSite.com is powered by Care2.com, the largest online network for
people who Care2 make a difference. With over 5 million members, we make it easy
for you to live a healthy, sustainable lifestyle and protect the environment,
human rights, education, women's rights, animal welfare, and much more... all in
one place! Join our community at http://www.Care2.com

Hi Everyone, I just join this group and I wanted to introduce myself.
My name is Marti, I am 18 years old. I have SB. I am in a wheelchair.
I am from North Carolina. I am in the 12th grade and in high school. I
play wheelchair sports like bowling, basketball, weight lifting. I am
also on a dance team and we perform at different places. I also help
at my church with the 8th graders on Sunday nights, and I also help
with my dance intructor with some of her classes on Thursday nights
too. The reason I joined this group is because I want to meet people
from North Carolina and different places and I hope that I can meet
some of you. Email me when you want to, to tell me that you want to
chat. Hope to talk to you soon and get to know each one of you soon
too. -Marti

Hi, Everyone!

Our family lives in NC and is involved with SBANC. My daughter Breanna
(12) was born with SB. I thought some of you might be interested in
seeing our story on the Billy Graham TV special this week. We haven't
seen the final version but we hope it gives a good message about how
Breanna -- like many others living with SB -- lives in victory over
SB. Many of you and your families may have a similar story.

North Carolina times and stations are:
City         Station  Network  Ch. 	 Date/Time
Charlotte WBTV CBS    3 10/26/2005 8:00 p.m.
Greenville WNCT CBS    9 10/26/2005 8:00 p.m.
Raleigh         WNCN NBC   17 10/29/2005 7:00 p.m.
Wilmington WECT NBC    6 10/28/2005 8:00 p.m.
Winston-Salem WXII NBC   12 10/29/2005 7:00 p.m.

For local times and dates in other areas please see:

http://www.billygraham.org/TV_Index.asp?r=2#TVListings

Thanks and God bless!

-- Mike Gates

Hi Everyone,
My name is Michelle, I'm 21 yrs old and I have Cerebral Palsy (cp). I
find it hard to
find others with cp and other disablities around my age. One of most
embrassing things my cp affected was my bladder so I'm completely
incontinence so I started a group for people with all disablities that
have incontinence problems if any of you care to join Just go
to http://health.groups.yahoo.com/group/Incontinence_Buddies/ If anyone
care to chat feel free to email or im me at
singing4joy4joy4god@...

Michelle 0:)

The last survey found that most respondents were aware
of the recommendation that adults with spina bifida
check their skin everyday.  However, only about 30%
actually perform skin checks on a daily basis.  Do you
agree?

Let your voices be heard – take the National Survey of
the Spina Bifida Community.  Visit www.sbaa.org and go
to the "what's new" bar on the right.  You can also
get to the survey directly by going to:
http://66.34.105.118/

There are just a few days left!  The survey ends on
Friday, October 21.

Thanks so much for your time.

Adriane

Adriane K. Griffen, MPH, CHES
Director, Public Health Programs
Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  (202) 944-3285, x 13  *  Fax: (202) 944-3295
Email: agriffen@...

Chair, National Council on Folic Acid
www.folicacidinfo.org
Phone:  (703) 838-7551 * Fax (703) 684-3247
Email: agriffen@...

______________________________________________________
October is Spina Bifida Awareness Month.
Please visit www.sbaa.org for more information.
______________________________________________________




__________________________________
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__________________________________
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Access over 1 million songs. Try it free.
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