New Here

[Guest guest]

> Welcome..you've find the right place non-judgemental

> support and friendship..there is no other group on the

> entire internet like this one.

Man, you all are so good for my ego this week!

Every time I see a statement like this, it chokes me up.

I read this to Marc and said, " How did this HAPPEN? I never really believed

it would happen. " He said, " You wanted it, and you willed it into

existence. You have a strength of will unheard of outside of King

novels. "

I'm not sure that's a compliment...LOL.

Jacquie

[Guest guest]

> Welcome..you've find the right place non-judgemental

> support and friendship..there is no other group on the

> entire internet like this one.

Man, you all are so good for my ego this week!

Every time I see a statement like this, it chokes me up.

I read this to Marc and said, " How did this HAPPEN? I never really believed

it would happen. " He said, " You wanted it, and you willed it into

existence. You have a strength of will unheard of outside of King

novels. "

I'm not sure that's a compliment...LOL.

Jacquie

[Guest guest]

I'm from New York but you could call around and ask. if you were to become

pregnant and you are doing well you really do not need a special doctor as long

as you know you are getting proper nutrition. Just ask around different

doctors offices and find out who is the best high risk doctor and then call

them,

they should be up to date with WLS. welcome to the group and good luck TTC

HUGS, ROBIN, NY

Age- 41

TTC#4 -

OPEN RNY

10-18-02

378/246/170???

DR.EDWARD HIXSON

SARANAC LAKE, NY

Mom to:

&

7 1/2 year twin boys and

Madison age 4 1/2 yrs.

Miscarraige August 2001

Miscarraige August 2003

Married to Pup:

15 years this

Halloween : )

[Guest guest]

I'm from New York but you could call around and ask. if you were to become

pregnant and you are doing well you really do not need a special doctor as long

as you know you are getting proper nutrition. Just ask around different

doctors offices and find out who is the best high risk doctor and then call

them,

they should be up to date with WLS. welcome to the group and good luck TTC

HUGS, ROBIN, NY

Age- 41

TTC#4 -

OPEN RNY

10-18-02

378/246/170???

DR.EDWARD HIXSON

SARANAC LAKE, NY

Mom to:

&

7 1/2 year twin boys and

Madison age 4 1/2 yrs.

Miscarraige August 2001

Miscarraige August 2003

Married to Pup:

15 years this

Halloween : )

[Guest guest]

I'm from New York but you could call around and ask. if you were to become

pregnant and you are doing well you really do not need a special doctor as long

as you know you are getting proper nutrition. Just ask around different

doctors offices and find out who is the best high risk doctor and then call

them,

they should be up to date with WLS. welcome to the group and good luck TTC

HUGS, ROBIN, NY

Age- 41

TTC#4 -

OPEN RNY

10-18-02

378/246/170???

DR.EDWARD HIXSON

SARANAC LAKE, NY

Mom to:

&

7 1/2 year twin boys and

Madison age 4 1/2 yrs.

Miscarraige August 2001

Miscarraige August 2003

Married to Pup:

15 years this

Halloween : )

[Guest guest]

Welcome !!

I'm in Michigan or I'd help! LOL! Just wanted to welcome you to the group,

though!

Good luck TTC!

Sharon

Korta said:

> Hi, My name is and I live in Tampa, Florida. I had WLS in

> February of this year, and am 25 pounds from goal. My husband and I

> would like to start trying to conceive at my 1 year anniversary. Has

> anyone found a WLS friendly OB in Tampa? Any info I could get would

> be appreciated. Thanks in advance.

>

>

>

>

>

> Children are a blessing, and a gift from the Lord. -Psalm 127:3

>

>

[Guest guest]

Welcome !!

I'm in Michigan or I'd help! LOL! Just wanted to welcome you to the group,

though!

Good luck TTC!

Sharon

Korta said:

> Hi, My name is and I live in Tampa, Florida. I had WLS in

> February of this year, and am 25 pounds from goal. My husband and I

> would like to start trying to conceive at my 1 year anniversary. Has

> anyone found a WLS friendly OB in Tampa? Any info I could get would

> be appreciated. Thanks in advance.

>

>

>

>

>

> Children are a blessing, and a gift from the Lord. -Psalm 127:3

>

>

[Guest guest]

Welcome !!

I'm in Michigan or I'd help! LOL! Just wanted to welcome you to the group,

though!

Good luck TTC!

Sharon

Korta said:

> Hi, My name is and I live in Tampa, Florida. I had WLS in

> February of this year, and am 25 pounds from goal. My husband and I

> would like to start trying to conceive at my 1 year anniversary. Has

> anyone found a WLS friendly OB in Tampa? Any info I could get would

> be appreciated. Thanks in advance.

>

>

>

>

>

> Children are a blessing, and a gift from the Lord. -Psalm 127:3

>

>

[Guest guest]

a,

Speaking from personal AND professional experience, CALL them and

ask for a copy in writing.

When I called, they told me my B12 level was normal when in fact it

was normal.....

B12 normal levels were 180-914....

mine was 181.... 1 point away from panic value low...

so get a hard copy and read it thoroughly!

I am certain the nurse just skimmed down through the NRML-ABNRML

area and read off the abnormal ones; and since mine was literally

NORMAL at that point, it didn't flag it.

Sheila

[Guest guest]

a,

Speaking from personal AND professional experience, CALL them and

ask for a copy in writing.

When I called, they told me my B12 level was normal when in fact it

was normal.....

B12 normal levels were 180-914....

mine was 181.... 1 point away from panic value low...

so get a hard copy and read it thoroughly!

I am certain the nurse just skimmed down through the NRML-ABNRML

area and read off the abnormal ones; and since mine was literally

NORMAL at that point, it didn't flag it.

Sheila

[Guest guest]

You will be a much healthier, happier pregnant mommy if you wait until a year

after your surgery to try to have a baby again. Don't let anyone talk you

into something you are not ready for. Having a new baby now only ads to the

pressure of the surgery ( worry about a new baby while trying to have surgery

and

recovery will not work well). I would lose the weight first and then have a

baby. I am sorry you have no support at home but we are here for you There is

another group for people who had or are ready to have GBS, it is called

Gastric_bypass_family-subscribe , It is a GREAT group with loads

of

info Good LUck.

HUGS, ROBIN, NY

Age- 41

TTC#4 -

OPEN RNY

10-18-02

378/246/170???

DR.EDWARD HIXSON

SARANAC LAKE, NY

Mom to:

&

7 1/2 year twin boys and

Madison age 4 1/2 yrs.

Miscarraige August 2001

Miscarraige August 2003

Married to Pup:

15 years this

Halloween : )

[Guest guest]

Welcome Kaci, to our family!

Jill

[Guest guest]

Re: new here

Bonnie ~ thanks for your warm welcome! Well, I've never heard of the

larygomalacia, but will add that to the things to read.

Laryngomalacia - is the cartilage of the larynx not hardening properly and is

" soft " . It causes stridor (noise on inhalation). I was at a SLP seminar last

week for swallowing disorders for pediatric patients and this was brought up.

Babies that die from SIDS are now thought to have laryngomalacia as one of the

causes of their deaths.

I too have mitral valve prolapse. My joints are mildly hyperextensive

(according to the ortho), but I still have problems with them. My hips

sublux/dislocate at times, the SI joint does the same, I have toes that

dislocate, bones going into the wrist sublux, TMJ, some hypotension, symptoms of

dysautomonia (going to an eletrophysiologist in May for my initial appt with the

MD), IBS, memory problems, June 2002 I had an umbilical hernia repaired (ouch

ouch ouch), flat feet for which I now have orthotics, soft skin that

tears/bruises easily, and a lot others I can't remember now unless I look at a

list

The geneticist looks at the symptoms of family members and makes the diagnosis

from that. The skin biopsy is to rule out Vascular EDS (VEDS). There are no

other definitive skin biopsies yet for the other types of EDS.

I have my EDS traced on both sides of my mom's father's parents (did you

follow that? ) and my dad has symptoms too. I have symptoms on my mom's side

of the family traced back 6 generations from doing the family tree.

Again...welcome. And remember, no question is a dumb question!!!

Jill is the list mom and has tons of articles on EDS - all you have to

do is ask!!!

I've posted the ceda website in a temporary location, so that the

information is still available to you!

http://members.rogers.com/ceda2/

Jill also has an automatic birthday calendar that sends out reminders to CEDA

for birthdays. Send jill your birthday and she'll put it in the calendar....

jilldouglas@...

There's also a biography page and photo page that are up at CEDA but you have

to ask Jill for the websites as only members can get in....

Bonnie

[Guest guest]

Re: new here

Bonnie ~ thanks for your warm welcome! Well, I've never heard of the

larygomalacia, but will add that to the things to read.

Laryngomalacia - is the cartilage of the larynx not hardening properly and is

" soft " . It causes stridor (noise on inhalation). I was at a SLP seminar last

week for swallowing disorders for pediatric patients and this was brought up.

Babies that die from SIDS are now thought to have laryngomalacia as one of the

causes of their deaths.

I too have mitral valve prolapse. My joints are mildly hyperextensive

(according to the ortho), but I still have problems with them. My hips

sublux/dislocate at times, the SI joint does the same, I have toes that

dislocate, bones going into the wrist sublux, TMJ, some hypotension, symptoms of

dysautomonia (going to an eletrophysiologist in May for my initial appt with the

MD), IBS, memory problems, June 2002 I had an umbilical hernia repaired (ouch

ouch ouch), flat feet for which I now have orthotics, soft skin that

tears/bruises easily, and a lot others I can't remember now unless I look at a

list

The geneticist looks at the symptoms of family members and makes the diagnosis

from that. The skin biopsy is to rule out Vascular EDS (VEDS). There are no

other definitive skin biopsies yet for the other types of EDS.

I have my EDS traced on both sides of my mom's father's parents (did you

follow that? ) and my dad has symptoms too. I have symptoms on my mom's side

of the family traced back 6 generations from doing the family tree.

Again...welcome. And remember, no question is a dumb question!!!

Jill is the list mom and has tons of articles on EDS - all you have to

do is ask!!!

I've posted the ceda website in a temporary location, so that the

information is still available to you!

http://members.rogers.com/ceda2/

Jill also has an automatic birthday calendar that sends out reminders to CEDA

for birthdays. Send jill your birthday and she'll put it in the calendar....

jilldouglas@...

There's also a biography page and photo page that are up at CEDA but you have

to ask Jill for the websites as only members can get in....

Bonnie

[Guest guest]

Hi Kaci,

Our family is affected by both EDS & Chiari 1 malformation, with our son

having a definite diagnosis of both, altho' it's thought others in the

family may also have both disorders.

There is an association between EDS & Chiari 1, & the first paper on this

awaits publication in the " Journal of Genetic Counseling. " This is being

published by the Drs. at the Chiari Institute in N.Y., who have now seen 81

patients with both EDS & Chiari 1 in the past 2 years.

Chiari 1 Malformation has already been found to be associated with

connective tissue disorders such as achondroplasia, acro-osteolysis

(Hadju-Cheney syndrome) &, more recently, Shprintzen-Goldberg syndrome

(SGS), in which cranio., Chiari 1 & a " marfanoid habitus " are found. I'm

wondering if your Drs. have looked into SGS?

Anyway, I'm a " lurker " that postulated there is a connection between EDS &

Chiari, & I've been looking into this for over 3 years. Must say I was still

" gobsmacked " when a world renowned Chiari expert told me there is an

association.

As others here have said, there is an overlap between the different types of

EDS...there is also some overlap between EDS, & other connective tissue

disorders....our son has the hypermobile type of EDS, & the skeletal

features of Marfan syndrome, as well as Chiari & syringomyelia....& he has

mitral valve prolapse too. Oh, & our youngest daughter's chest collapsed

shortly after birth etc.

We also have a family history of stridor ( a croup-like disorder, with

difficulty breathing in) that Bonnie mentioned. All 3 of our children have

had this; our youngest daughter had bilateral vocal cord paralysis, now

thought to be due to Chiari 1, & our son's otolaryngologist said his stridor

was definitely due to his Chiari malformation.

Well I certainly know about too many coincidences too, & am pleased you have

found the ceda family; I'm very pleased to " meet " you.

You might also consider joining another Yahoo group on Chiari. This is wacma

(World Arnold Chiari Malformation Association):

http://groups.yahoo.com/group/chiari/ You'll probably be amazed how often

EDS is discussed in their posts...many have been to/know of the Chiari

specialists in N.Y., who have now written about this association between EDS

& Chiari. One of the Drs. is even a list member....look out for Dr. B's

posts if you join...he has helped our family enormously.

With best wishes to you & your family,

Gail

North Yorkshire, U.K.

[Guest guest]

Hi Kaci,

Our family is affected by both EDS & Chiari 1 malformation, with our son

having a definite diagnosis of both, altho' it's thought others in the

family may also have both disorders.

There is an association between EDS & Chiari 1, & the first paper on this

awaits publication in the " Journal of Genetic Counseling. " This is being

published by the Drs. at the Chiari Institute in N.Y., who have now seen 81

patients with both EDS & Chiari 1 in the past 2 years.

Chiari 1 Malformation has already been found to be associated with

connective tissue disorders such as achondroplasia, acro-osteolysis

(Hadju-Cheney syndrome) &, more recently, Shprintzen-Goldberg syndrome

(SGS), in which cranio., Chiari 1 & a " marfanoid habitus " are found. I'm

wondering if your Drs. have looked into SGS?

Anyway, I'm a " lurker " that postulated there is a connection between EDS &

Chiari, & I've been looking into this for over 3 years. Must say I was still

" gobsmacked " when a world renowned Chiari expert told me there is an

association.

As others here have said, there is an overlap between the different types of

EDS...there is also some overlap between EDS, & other connective tissue

disorders....our son has the hypermobile type of EDS, & the skeletal

features of Marfan syndrome, as well as Chiari & syringomyelia....& he has

mitral valve prolapse too. Oh, & our youngest daughter's chest collapsed

shortly after birth etc.

We also have a family history of stridor ( a croup-like disorder, with

difficulty breathing in) that Bonnie mentioned. All 3 of our children have

had this; our youngest daughter had bilateral vocal cord paralysis, now

thought to be due to Chiari 1, & our son's otolaryngologist said his stridor

was definitely due to his Chiari malformation.

Well I certainly know about too many coincidences too, & am pleased you have

found the ceda family; I'm very pleased to " meet " you.

You might also consider joining another Yahoo group on Chiari. This is wacma

(World Arnold Chiari Malformation Association):

http://groups.yahoo.com/group/chiari/ You'll probably be amazed how often

EDS is discussed in their posts...many have been to/know of the Chiari

specialists in N.Y., who have now written about this association between EDS

& Chiari. One of the Drs. is even a list member....look out for Dr. B's

posts if you join...he has helped our family enormously.

With best wishes to you & your family,

Gail

North Yorkshire, U.K.

[Guest guest]

Hi Kaci,

Our family is affected by both EDS & Chiari 1 malformation, with our son

having a definite diagnosis of both, altho' it's thought others in the

family may also have both disorders.

There is an association between EDS & Chiari 1, & the first paper on this

awaits publication in the " Journal of Genetic Counseling. " This is being

published by the Drs. at the Chiari Institute in N.Y., who have now seen 81

patients with both EDS & Chiari 1 in the past 2 years.

Chiari 1 Malformation has already been found to be associated with

connective tissue disorders such as achondroplasia, acro-osteolysis

(Hadju-Cheney syndrome) &, more recently, Shprintzen-Goldberg syndrome

(SGS), in which cranio., Chiari 1 & a " marfanoid habitus " are found. I'm

wondering if your Drs. have looked into SGS?

Anyway, I'm a " lurker " that postulated there is a connection between EDS &

Chiari, & I've been looking into this for over 3 years. Must say I was still

" gobsmacked " when a world renowned Chiari expert told me there is an

association.

As others here have said, there is an overlap between the different types of

EDS...there is also some overlap between EDS, & other connective tissue

disorders....our son has the hypermobile type of EDS, & the skeletal

features of Marfan syndrome, as well as Chiari & syringomyelia....& he has

mitral valve prolapse too. Oh, & our youngest daughter's chest collapsed

shortly after birth etc.

We also have a family history of stridor ( a croup-like disorder, with

difficulty breathing in) that Bonnie mentioned. All 3 of our children have

had this; our youngest daughter had bilateral vocal cord paralysis, now

thought to be due to Chiari 1, & our son's otolaryngologist said his stridor

was definitely due to his Chiari malformation.

Well I certainly know about too many coincidences too, & am pleased you have

found the ceda family; I'm very pleased to " meet " you.

You might also consider joining another Yahoo group on Chiari. This is wacma

(World Arnold Chiari Malformation Association):

http://groups.yahoo.com/group/chiari/ You'll probably be amazed how often

EDS is discussed in their posts...many have been to/know of the Chiari

specialists in N.Y., who have now written about this association between EDS

& Chiari. One of the Drs. is even a list member....look out for Dr. B's

posts if you join...he has helped our family enormously.

With best wishes to you & your family,

Gail

North Yorkshire, U.K.

[Guest guest]

Patti ~ I'm glad to have found you all too! Thanks for the warm

welcome!

hugs~

Kaci

> Hi Kaci --

>

> Welcome to the group -- glad you have found us!! My name is Patti

and I have VEDS. This is a great group with very special people in

it. Welcome again!!!!!

>

> Take care, Patti

[Guest guest]

Patti ~ I'm glad to have found you all too! Thanks for the warm

welcome!

hugs~

Kaci

> Hi Kaci --

>

> Welcome to the group -- glad you have found us!! My name is Patti

and I have VEDS. This is a great group with very special people in

it. Welcome again!!!!!

>

> Take care, Patti

[Guest guest]

Patti ~ I'm glad to have found you all too! Thanks for the warm

welcome!

hugs~

Kaci

> Hi Kaci --

>

> Welcome to the group -- glad you have found us!! My name is Patti

and I have VEDS. This is a great group with very special people in

it. Welcome again!!!!!

>

> Take care, Patti

[Guest guest]

Welcome to the board !

Louisa

6-27-99

Zoe 2-22-04 Right Unilateral Clubfoot

> Hello everyone! I am so glad I found this site, and was pointed in

> this direction. My little boy will be born in late November, but I

> am trying to get an early start finding information. We were told

at

> our 20 week ultrasound that he had club feet and were sent for

> another 2 weeks later. Here we were told that the cerebellum was

> measuring a little small. I can't find any information on this at

> all, and wondered if anyone had heard of this before. I am hopeful

> they are monitoring everything more closely because of his club

> feet. Everything I have read seems to point to that.

>

> My question about his club feet is about a doctor. I emailed Dr.

> Ponseti, for doctors in Indianapolis, Indiana. Currently, there

are

> none. Is anyone from this area, who has found a great doctor? We

> may consider driving to Iowa, but that really won't be a fun trip

at

> the first of Dec. with our first newborn!

>

> Also, was anyone else's doctor very cautious before the baby was

> born, and found out everything was ok when the child was born?

> Thanks for your help in advance!

>

>

[Guest guest]

,

I'm so happy you are here - no need to go into my story, as I

already bombarded you with all the details. I'm sure you'll get

lots of great advice.

Holly

Zachary 7/27/02

Right C/F

Treated by Dr. Ponseti

DBB nights only

#2 due 1/8

> Hello everyone! I am so glad I found this site, and was pointed

in

> this direction. My little boy will be born in late November, but

I

> am trying to get an early start finding information. We were told

at

> our 20 week ultrasound that he had club feet and were sent for

> another 2 weeks later. Here we were told that the cerebellum was

> measuring a little small. I can't find any information on this at

> all, and wondered if anyone had heard of this before. I am

hopeful

> they are monitoring everything more closely because of his club

> feet. Everything I have read seems to point to that.

>

> My question about his club feet is about a doctor. I emailed Dr.

> Ponseti, for doctors in Indianapolis, Indiana. Currently, there

are

> none. Is anyone from this area, who has found a great doctor? We

> may consider driving to Iowa, but that really won't be a fun trip

at

> the first of Dec. with our first newborn!

>

> Also, was anyone else's doctor very cautious before the baby was

> born, and found out everything was ok when the child was born?

> Thanks for your help in advance!

>

>

[Guest guest]

Hello .

I found out at my 20 week ultrasound too. I was so devastated! They also

told me that there was a chance it could correct itself before she was

born. Needless to say, it didn't. My daughter has bilateral club

foot. I just now discovered this message board. I wish I found it at the

stage you are at. You are way ahead, good for you!!!!

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

-

Congrats on your baby to come! I cannot lend any guidance in how

cautious my dr was prior--because we didn't know until he got here!

But we do drive from Ky to St Louis, MO to see Dr. Dobbs. He is a

great doctor. I cannot say enough wonderful things about him. We

drive about 225 miles to see him. According to mapquest it's 242

miles from Inianapolis to St. Louis. Let me tell you it's worth

EVERY mile. He is very committed to the Ponseti method. He has been

seeing since he was 2 weeks old. is will be 3 in

August. He runs all over the place. He is still in the DBB (shoes

and bar) 12 hours/day. Dr. Dobbs is very skillful and knowledgeble

of the Ponseti method (he actually went to medical school at

University of Iowa). He is also a great person very friendly and

caring. He sees patients in his office and he also sees patients at

Shriner's. We see him at Shriner's because our insurance would be

out of network. His clubfoot clinic at Shriner's is on Thursday's

(it's been on Thursday's for like a couple of years now) and it's in

the afternoon. It used to be in the morning and we would have to

spend the night if we didn't want to leave town in the middle of the

night to get there! But now with it being in the afternoon we

sometimes make the trip in one day or sometimes we stay the night and

visit the zoo, or other attractions. Let me know if you have any

questions for me. I would be glad to answer what I can. Is this

your first baby?

Pam and (8-12-01)

> Hello everyone! I am so glad I found this site, and was pointed in

> this direction. My little boy will be born in late November, but I

> am trying to get an early start finding information. We were told

at

> our 20 week ultrasound that he had club feet and were sent for

> another 2 weeks later. Here we were told that the cerebellum was

> measuring a little small. I can't find any information on this at

> all, and wondered if anyone had heard of this before. I am hopeful

> they are monitoring everything more closely because of his club

> feet. Everything I have read seems to point to that.

>

> My question about his club feet is about a doctor. I emailed Dr.

> Ponseti, for doctors in Indianapolis, Indiana. Currently, there

are

> none. Is anyone from this area, who has found a great doctor? We

> may consider driving to Iowa, but that really won't be a fun trip

at

> the first of Dec. with our first newborn!

>

> Also, was anyone else's doctor very cautious before the baby was

> born, and found out everything was ok when the child was born?

> Thanks for your help in advance!

>

>

[Guest guest]

,

I am in Muncie Indiana. The closest Ponseti doctor I have found is

in St. Louis. I took my son to a local ortho, but after 18 months

of treatment with him I was not satisfied with the results. I take

Tyler to Dr. Dobbs in St. Louis. Thankfully I found him through

this site! He has had one casting with him so far and getting ready

to go Tue. for his second set. I also found out about my son's cf

when I was pregnant with him, but unfortunatly I didn't do the

research I should have. It's good that you are getting the info

early so that you may avoid the things that we have had to go

through. If there is anything else I can help you with just let me

know. The people in this group has helped me so much I am more then

happy to pass some of my knowlege to someone else.

Tyler's mommy

bi lat cf 1/14/03

first set of casts, second round

> Hello everyone! I am so glad I found this site, and was pointed

in

> this direction. My little boy will be born in late November, but

I

> am trying to get an early start finding information. We were told

at

> our 20 week ultrasound that he had club feet and were sent for

> another 2 weeks later. Here we were told that the cerebellum was

> measuring a little small. I can't find any information on this at

> all, and wondered if anyone had heard of this before. I am

hopeful

> they are monitoring everything more closely because of his club

> feet. Everything I have read seems to point to that.

>

> My question about his club feet is about a doctor. I emailed Dr.

> Ponseti, for doctors in Indianapolis, Indiana. Currently, there

are

> none. Is anyone from this area, who has found a great doctor? We

> may consider driving to Iowa, but that really won't be a fun trip

at

> the first of Dec. with our first newborn!

>

> Also, was anyone else's doctor very cautious before the baby was

> born, and found out everything was ok when the child was born?

> Thanks for your help in advance!

>

>