hello

[Guest guest]

Amy and ,

Thanks for responding. Your are correct about us feeling

overwhelmed. We just found out yesterday. We had an amnio done

yesterday as well to see if there are any other problems, but hopeful

there are not. Today we had a cardio ultrasound done to check the

baby's heart and the doctor said her heart is perfect. We are very

happy about this and we are praying that the amnio results show no

other problems.

From what I have read, it sounds as though if treated correctly, the

club foot can be corrected and this is quite relieving. We were a

mess yesterday as we knew nothing about club feet. Thank God for the

internet. It has helped us feel much better about 's future by

reading other parents stories. While we are sad we dont have

a " perfect baby " , we are very relieved that this can be corrected.

Now we wait for another 10-14 days to get the amnio results back. We

are praying that this is an isolated incodent and not connected with

any type of syndrome. Fingers crossed! All of them!

Thanks so much for responding. It is great comfort hearing about you

baby's success story and we hope to follow in yours and others

footsteps! We are in New Jersey in the Philadephia area....so anyone

reading this who know of specialists int he area, feel free to

contact us....we want to do this right!

Thanks again for writing Amy and ....you have dried some

tears!

Ed, Regina, and to be!

[Guest guest]

Ed & Regina,

We too had an amniocentesis done during the 23rd week of my pregnancy. The

procedure was painful and emotionally quite difficult...I feel for you! We

had a very hard time researching the probability of associated syndromes

with clubfoot. However, I wanted to relay on to you what our high risk

obstetrician told us...and, that is, he felt there was less than a 1/10%

(.1%) chance of associated syndromes (with clubfoot) after the detailed

ultrasound results prove nothing else is wrong (usually they do this after

they find the clubfeet---they just look at everything a little more

carefully). Hopefully this will ease atleast some of your anxiety!

Amy &

Re: Hello

>Amy and ,

>

>Thanks for responding. Your are correct about us feeling

>overwhelmed. We just found out yesterday. We had an amnio done

>yesterday as well to see if there are any other problems, but hopeful

>there are not. Today we had a cardio ultrasound done to check the

>baby's heart and the doctor said her heart is perfect. We are very

>happy about this and we are praying that the amnio results show no

>other problems.

>

>From what I have read, it sounds as though if treated correctly, the

>club foot can be corrected and this is quite relieving. We were a

>mess yesterday as we knew nothing about club feet. Thank God for the

>internet. It has helped us feel much better about 's future by

>reading other parents stories. While we are sad we dont have

>a " perfect baby " , we are very relieved that this can be corrected.

>Now we wait for another 10-14 days to get the amnio results back. We

>are praying that this is an isolated incodent and not connected with

>any type of syndrome. Fingers crossed! All of them!

>

>Thanks so much for responding. It is great comfort hearing about you

>baby's success story and we hope to follow in yours and others

>footsteps! We are in New Jersey in the Philadephia area....so anyone

>reading this who know of specialists int he area, feel free to

>contact us....we want to do this right!

>

>Thanks again for writing Amy and ....you have dried some

>tears!

>

>Ed, Regina, and to be!

>

>

>

>

[Guest guest]

Ed & Regina,

We too had an amniocentesis done during the 23rd week of my pregnancy. The

procedure was painful and emotionally quite difficult...I feel for you! We

had a very hard time researching the probability of associated syndromes

with clubfoot. However, I wanted to relay on to you what our high risk

obstetrician told us...and, that is, he felt there was less than a 1/10%

(.1%) chance of associated syndromes (with clubfoot) after the detailed

ultrasound results prove nothing else is wrong (usually they do this after

they find the clubfeet---they just look at everything a little more

carefully). Hopefully this will ease atleast some of your anxiety!

Amy &

Re: Hello

>Amy and ,

>

>Thanks for responding. Your are correct about us feeling

>overwhelmed. We just found out yesterday. We had an amnio done

>yesterday as well to see if there are any other problems, but hopeful

>there are not. Today we had a cardio ultrasound done to check the

>baby's heart and the doctor said her heart is perfect. We are very

>happy about this and we are praying that the amnio results show no

>other problems.

>

>From what I have read, it sounds as though if treated correctly, the

>club foot can be corrected and this is quite relieving. We were a

>mess yesterday as we knew nothing about club feet. Thank God for the

>internet. It has helped us feel much better about 's future by

>reading other parents stories. While we are sad we dont have

>a " perfect baby " , we are very relieved that this can be corrected.

>Now we wait for another 10-14 days to get the amnio results back. We

>are praying that this is an isolated incodent and not connected with

>any type of syndrome. Fingers crossed! All of them!

>

>Thanks so much for responding. It is great comfort hearing about you

>baby's success story and we hope to follow in yours and others

>footsteps! We are in New Jersey in the Philadephia area....so anyone

>reading this who know of specialists int he area, feel free to

>contact us....we want to do this right!

>

>Thanks again for writing Amy and ....you have dried some

>tears!

>

>Ed, Regina, and to be!

>

>

>

>

[Guest guest]

Amy and ,

We like the odds of 1/10 of a percent! We did have a triple screen

blood test done about 3 weeks ago and that had come back clean. So

we feel good about the amnio test coming back clean as well...again,

fingers crossed.

We have been reading up on club feet non stop since we learned

will have a right club foot. The stories and pictures on this site

are quite reassuring and have really helped us to understand what we

are about to go through.

Your right about our anxiety level being high, but we are hanging in

there. Your posts have been extremely helpful!!! Thank you so much!

Ed, Regina and

[Guest guest]

> Hi, we are Ed and Regina and our baby to be born in another 20

weeks was just diagnosed as having a right clubbed foot. What does

this mean to us and her? I know this is a pretty open ended

question, but we just found out so any and all responses would be

helpful.

>

> Tks,

>

> Ed, Regina and baby .

Dear Ed and Regina,

I just realized I hadn't welcomed you. Congratulations on baby

on the way! I'm sure you are worried and overwhelmed at this point,

but, as Dr. Ponseti says, be assured that with proper treatment, your

baby will do fine. I think he says something like, " a clubfoot is no

handicap, and compatible with normal activity and a normal life. "

Many of us here were surprised at delivery, so you are fortunate to

be able to do research ahead of time. Many of us went through months

of treatment that didn't work, only to switch to the Ponseti method

with success. Our daughter is almost 2 years old now, and doing

great. People who don't know about her foot have no idea there was

ever anything wrong, and she's totally healthy in every way.

I won't deny that those early months were hard .. with weekly cast

changes and worry about what was to come .. but in our case it's

because we were in the midst of treatment that wasn't working, and

then had to switch doctors and travel far to get the best treatment.

You have the advantage of being able to be informed and make good

choices the first time around.

You can look in the Files and Photos section at this website for

information, and of course Dr. Ponseti's website at the University of

Iowa:

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

Here's another collection of resources:

http://pages.ivillage.com/clubfootboard/links/ponseti.html

Here's our daughter's story:

http://www.dmregister.com/news/stories/c4788996/13189476.html

http://www.dmregister.com/news/stories/c4788996/13189473.html

http://www.dmregister.com/news/stories/c4788996/13189492.html

I have written this in a hurry.. Just ask questions and many here can

help.

Best of luck, and enjoy your pregnancy! Everything will work out OK..

and

born 6/29/00

switched to Ponseti method at 3 months old

[Guest guest]

> Hi, we are Ed and Regina and our baby to be born in another 20

weeks was just diagnosed as having a right clubbed foot. What does

this mean to us and her? I know this is a pretty open ended

question, but we just found out so any and all responses would be

helpful.

>

> Tks,

>

> Ed, Regina and baby .

Dear Ed and Regina,

I just realized I hadn't welcomed you. Congratulations on baby

on the way! I'm sure you are worried and overwhelmed at this point,

but, as Dr. Ponseti says, be assured that with proper treatment, your

baby will do fine. I think he says something like, " a clubfoot is no

handicap, and compatible with normal activity and a normal life. "

Many of us here were surprised at delivery, so you are fortunate to

be able to do research ahead of time. Many of us went through months

of treatment that didn't work, only to switch to the Ponseti method

with success. Our daughter is almost 2 years old now, and doing

great. People who don't know about her foot have no idea there was

ever anything wrong, and she's totally healthy in every way.

I won't deny that those early months were hard .. with weekly cast

changes and worry about what was to come .. but in our case it's

because we were in the midst of treatment that wasn't working, and

then had to switch doctors and travel far to get the best treatment.

You have the advantage of being able to be informed and make good

choices the first time around.

You can look in the Files and Photos section at this website for

information, and of course Dr. Ponseti's website at the University of

Iowa:

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

Here's another collection of resources:

http://pages.ivillage.com/clubfootboard/links/ponseti.html

Here's our daughter's story:

http://www.dmregister.com/news/stories/c4788996/13189476.html

http://www.dmregister.com/news/stories/c4788996/13189473.html

http://www.dmregister.com/news/stories/c4788996/13189492.html

I have written this in a hurry.. Just ask questions and many here can

help.

Best of luck, and enjoy your pregnancy! Everything will work out OK..

and

born 6/29/00

switched to Ponseti method at 3 months old

[Guest guest]

Hi, I am expecting a baby boy at the end of July, who has bilateral clubfeet as

per 3 ultrasounds. I too was very nervous, but have researched it thoroughly

and now feel very comfortable about his prognosis with the Ponsetti Method. I

will be using a pediatric orthopedist in Northern New Jersey who only uses the

Ponsetti Method - he is not yet listed on the Ponsetti Web Site, but will be

soon. His office is in town, which works well for me as I am a nurse at

town Memorial. There are also several doctors in New York City who are

very well known, they are listed on the Ponsetti web site. I don't know which

area would be closer for you, but feel free to contact me if you would like to

discuss this further - email is PColl@.... Best of luck to you and your

baby, I'm sure it will all work out.!

Sincerely,

KC

Re: Hello

Amy and ,

Thanks for responding. Your are correct about us feeling

overwhelmed. We just found out yesterday. We had an amnio done

yesterday as well to see if there are any other problems, but hopeful

there are not. Today we had a cardio ultrasound done to check the

baby's heart and the doctor said her heart is perfect. We are very

happy about this and we are praying that the amnio results show no

other problems.

From what I have read, it sounds as though if treated correctly, the

club foot can be corrected and this is quite relieving. We were a

mess yesterday as we knew nothing about club feet. Thank God for the

internet. It has helped us feel much better about 's future by

reading other parents stories. While we are sad we dont have

a " perfect baby " , we are very relieved that this can be corrected.

Now we wait for another 10-14 days to get the amnio results back. We

are praying that this is an isolated incodent and not connected with

any type of syndrome. Fingers crossed! All of them!

Thanks so much for responding. It is great comfort hearing about you

baby's success story and we hope to follow in yours and others

footsteps! We are in New Jersey in the Philadephia area....so anyone

reading this who know of specialists int he area, feel free to

contact us....we want to do this right!

Thanks again for writing Amy and ....you have dried some

tears!

Ed, Regina, and to be!

[Guest guest]

Hi, I am expecting a baby boy at the end of July, who has bilateral clubfeet as

per 3 ultrasounds. I too was very nervous, but have researched it thoroughly

and now feel very comfortable about his prognosis with the Ponsetti Method. I

will be using a pediatric orthopedist in Northern New Jersey who only uses the

Ponsetti Method - he is not yet listed on the Ponsetti Web Site, but will be

soon. His office is in town, which works well for me as I am a nurse at

town Memorial. There are also several doctors in New York City who are

very well known, they are listed on the Ponsetti web site. I don't know which

area would be closer for you, but feel free to contact me if you would like to

discuss this further - email is PColl@.... Best of luck to you and your

baby, I'm sure it will all work out.!

Sincerely,

KC

Re: Hello

Amy and ,

Thanks for responding. Your are correct about us feeling

overwhelmed. We just found out yesterday. We had an amnio done

yesterday as well to see if there are any other problems, but hopeful

there are not. Today we had a cardio ultrasound done to check the

baby's heart and the doctor said her heart is perfect. We are very

happy about this and we are praying that the amnio results show no

other problems.

From what I have read, it sounds as though if treated correctly, the

club foot can be corrected and this is quite relieving. We were a

mess yesterday as we knew nothing about club feet. Thank God for the

internet. It has helped us feel much better about 's future by

reading other parents stories. While we are sad we dont have

a " perfect baby " , we are very relieved that this can be corrected.

Now we wait for another 10-14 days to get the amnio results back. We

are praying that this is an isolated incodent and not connected with

any type of syndrome. Fingers crossed! All of them!

Thanks so much for responding. It is great comfort hearing about you

baby's success story and we hope to follow in yours and others

footsteps! We are in New Jersey in the Philadephia area....so anyone

reading this who know of specialists int he area, feel free to

contact us....we want to do this right!

Thanks again for writing Amy and ....you have dried some

tears!

Ed, Regina, and to be!

[Guest guest]

Ed, Regina and baby ,

Welcome to our group.

Since you are new, I wanted to make sure that you knew about checking

into the type of treatment methods that exist as well as knowing who

in your area uses the Ponseti method so that you can research out who

you want to treat your child when she is born. The stated purpose of

this site is to help other parents know about the existance of non-

surgical methods of treatment for clubfoot, but most specifically

about the Ponseti method. Until recently, the Ponseti method was

only used by about 2% of the pediatric orthopedists in North

America. Now it appears that perhaps as many as 60-70% of them have

started to try to at least incorporate Ponseti method principles into

their methods of treatment.

I particularly like a quote by a Dr. Ponseti on clubfoot where he

states; " Parents of infants born with clubfeet may be reassured that

their baby, if otherwise normal, when treated by expert hands will

have normal looking feet with normal function for all practical

purposes. The well-treated clubfoot is no handicap and is fully

compatible with a normal, active life. "

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Parents.html

You may not yet be aware that there are at least 4 main methods of

treating clubfoot, with many variations on each. The method used

depends upon the training and experience of each doctor. Almost all

doctors begin initally with basic non-surgical methods such as

traditional casting, Kite method, Ponseti method and French

Physiotherapy. Each method typically begins with some form of

manipulation and casting although some use more physiotherapy

oriented techniques. For each method, if the non-surgical method does

not work, then surgery is used at between usually between 3 to 18

months of age (with 6-9 months being the most common age). How best

to treat clubfoot is a very controversial subject among pediatric

orthopedic doctors. Therefor I feel that it is important that each

parent be aware of those different treatment alternatives to help in

making the decisions about the care of their own child.

You can see from the Houston Shriners Hospitals discussion on

Clubfoot on the national web site that they have at least 2 different

casting methods that they are using. At their web site they

say " Talipes equinovarus, or clubfoot, is a relatively common foot

deformity, affecting one in 1,000 children each year. Clubfoot is

readily identifiable at birth, making it easy to diagnose. Yet how to

best treat clubfoot generates more controversy among physicians than

almost any other orthopaedic condition... "

" Doctors differ widely in their opinions regarding the success rate

of serial casting. Some say the procedure works only five percent of

the time [95% surgery], while some believe almost all cases of

clubfoot [i.e. Ponseti method], when treated early and correctly, can

be corrected with conservative therapy. Dr. [in his

experience] says serial casting works in 20 to 25 percent of cases,

but this percentage could increase, he said, if more physicians were

trained in proper manipulation and casting techniques. "

http://www.shrinershq.org/patientedu/clubfoot2.html

The most common method of treatment has been is traditional casting

and surgery. For this method of treatment, the casting is done for

from 3 to 6 months. These methods are successful without the surgery

between 5% to 35% of the time. These methods are obviously more

surgically oriented. Information on this type of method can be read

at the Parentsplace information library at

http://pages.ivillage.com/clubfootboard/links/surgical.html

The Kite method was developed in the 1930's by a Dr. Hiram Kite at

Atlanta's ish Rite Hospital. Dr. Kite was one of the leading

advocates of non-surgical treatment for many years

http://www.childrensortho.com/ It involves plaster casting for from

18 months to 2 or more years, but was successful about 90% of the

time in avoiding the surgery. It was one of the more common methods

of treatment in the 1930's to 1950's until most doctors came to feel

that the method took too long and that surgery might be a quicker and

better alternative. Most initial casting methods are decendants of

the Kite method although I am aware of no one who currently still

uses the original 2 years of casting " Kite " method. It appears that

the World Champion Figure Skater Kristi Yamaguchi had the Kite type

method of treatment. In her biography, " Always Dream " , Kristi

Yamaguichi indicated that the casting began at birth and went on for

about 2 years. A part in her book also said that she also had casts

on and off up until about age 4.

French Physiotherapy type methods have been in existance in Europe

for the past 20-30 years and have recieved increased attention

because of the success of the Dimeglio method over the past 5-10

years. French Physiotherpay methods involve a daily visit to the

physiotherpist for the first 3 months and then a declining frequency

of visits thereafter as the parents learn to do the physiotherapy

themselves at home. The Dimeglio method is currently only available

in Dallas, San , Austin, Texas; Spokane Wash as well as

France. In the US, it appears to be successful about 50% of the time

in avoiding the surgery. Information on French Phsyiotherapy methods

can be found at http://pages.ivillage.com/clubfootboard/links/fp.html

The Ponseti " Non-Surgical " method has recently been recieving

increased attention. It was developed in the late 1940's but until

recently only about 2% of pediatric orthopedists used it. With the

publication of Dr. Ponseti's book " Congenital Clubfoot, Fundamentals

of Treatment " in 1996 and the availability of information about it to

Parents and doctors on the internet, there appear to be at least 60-

70% of the pediatric orthopedists in the US who have recieved

training in it in the past 2 years. The Ponseti method uses 4-7

weekly long leg casts over a 6 to 8 week period to correctly position

the feet. Often a percutaneous tenotomy is performed as a part of the

final 3 week cast as an outpatient procedure. The Ponseti method is

successful in correctly positioning feet in 95% of children treated

from near birth without the posterior release types of surgical

procedures. Information on the Ponseti method can be found at

http://pages.ivillage.com/clubfootboard/links/ponseti.html

In a 1993 long term outcome study of those treated with the Ponseti

method, it was reported " In a recent review of our patients treated

25 to 42 years ago, it was found that although the treated clubfeet

were less supple than the normal foot, there were no significant

difference in function or performance compared to a population of a

similar age born with normal feet. "

http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

There have also been some recent studies involving the Ponseti method

that were presented in the past month at Conventions of the American

Academy of Orthopedic Surgeons (AAOS) and the American College of

Foot and Ankle Surgeons (ACFAS) at

http://groups.yahoo.com/group/nosurgery4clubfoot/message/10056

and at http://groups.yahoo.com/group/nosurgery4clubfoot/message/10608

I hope that this information is of help if you are in learing about

different methods of treatment. If you are interested in learning

more about the Ponseti method, Dr. Ponseti's main web site which

includes information for parents, doctors, testimonials, a list of

qualified doctors, study references, a downloadable video of all of

the procedures, etc. can be seen at

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

There is also the Ponseti method parents support web site located

which is where you are at the moment at

http://groups.yahoo.com/group/nosurgery4clubfoot There you will find

web links, files, photos and messages on about everything that exists

on the internet regarding the Ponseti method as well as about 200

plus parents and others who have used or are interested in the

Ponseti method.

and (3-17-99)

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

> Hi, we are Ed and Regina and our baby to be born in another 20

weeks

> was just diagnosed as having a right clubbed foot. What does this

> mean to us and her? I know this is a pretty open ended question,

but

> we just found out so any and all responses would be helpful.

>

> Tks,

>

> Ed, Regina and baby .

[Guest guest]

Hi

I'm Amy mother of who was born with bilateral clubbed feet (undiagnosed

before birth). It means you are going to have a perfectly healthy happy baby

who needs a little tweeking to fix a small problem. Be ready for some intense

times the first three months, but the baby will never know the difference.

had his first set of casts when he was three days old. Be sure to find

a ortho in your area who uses the Ponseti method. It is worth any trouble you

have in locating one.

Amy

>>> eral98@... 06/04/02 12:56PM >>>

Hi, we are Ed and Regina and our baby to be born in another 20 weeks

was just diagnosed as having a right clubbed foot. What does this

mean to us and her? I know this is a pretty open ended question, but

we just found out so any and all responses would be helpful.

Tks,

Ed, Regina and baby .

[Guest guest]

Hi

I'm Amy mother of who was born with bilateral clubbed feet (undiagnosed

before birth). It means you are going to have a perfectly healthy happy baby

who needs a little tweeking to fix a small problem. Be ready for some intense

times the first three months, but the baby will never know the difference.

had his first set of casts when he was three days old. Be sure to find

a ortho in your area who uses the Ponseti method. It is worth any trouble you

have in locating one.

Amy

>>> eral98@... 06/04/02 12:56PM >>>

Hi, we are Ed and Regina and our baby to be born in another 20 weeks

was just diagnosed as having a right clubbed foot. What does this

mean to us and her? I know this is a pretty open ended question, but

we just found out so any and all responses would be helpful.

Tks,

Ed, Regina and baby .

[Guest guest]

Hi ,

I am familiar with town as I grew up in Short Hills. We live

only a little over an hour from there now in Southern NJ. I would

like to speak with you about what you have learned. Please email me

back when you get this and hopefully we can speak on the phone.

My email is eralston9@...

Thanks for responding...we can use all the info you have...best of

luck to you and yours as well!!!!

Ed, Regina, and

[Guest guest]

Hi ,

I am familiar with town as I grew up in Short Hills. We live

only a little over an hour from there now in Southern NJ. I would

like to speak with you about what you have learned. Please email me

back when you get this and hopefully we can speak on the phone.

My email is eralston9@...

Thanks for responding...we can use all the info you have...best of

luck to you and yours as well!!!!

Ed, Regina, and

[Guest guest]

Ed & Regina,

If you are looking for a Ponseti doctor, I think the closest one to

you is in Baltimore at Sinai Hospital. His name is Herzenberg.

His phone number is or . You can contact

him via e-mail at jherzenberg@...

We started seeing him after a failed correction with another doctor

and I couldn't be happier!

Good luck!

Theresa

mom to Dylan, born 2/24/01

bilateral club feet (currently seeing Dr. Herzenberg awaiting

tenotomy on June 21st)

unilateral cleft lip & palate (repaired)

> Amy and ,

>

> Thanks for responding. Your are correct about us feeling

> overwhelmed. We just found out yesterday. We had an amnio done

> yesterday as well to see if there are any other problems, but

hopeful

> there are not. Today we had a cardio ultrasound done to check the

> baby's heart and the doctor said her heart is perfect. We are very

> happy about this and we are praying that the amnio results show no

> other problems.

>

> From what I have read, it sounds as though if treated correctly,

the

> club foot can be corrected and this is quite relieving. We were a

> mess yesterday as we knew nothing about club feet. Thank God for

the

> internet. It has helped us feel much better about 's future

by

> reading other parents stories. While we are sad we dont have

> a " perfect baby " , we are very relieved that this can be corrected.

> Now we wait for another 10-14 days to get the amnio results back.

We

> are praying that this is an isolated incodent and not connected

with

> any type of syndrome. Fingers crossed! All of them!

>

> Thanks so much for responding. It is great comfort hearing about

you

> baby's success story and we hope to follow in yours and others

> footsteps! We are in New Jersey in the Philadephia area....so

anyone

> reading this who know of specialists int he area, feel free to

> contact us....we want to do this right!

>

> Thanks again for writing Amy and ....you have dried some

> tears!

>

> Ed, Regina, and to be!

[Guest guest]

Hey Tammy,

Dr. Thayer from NWH in MA? That means you're close to me. He's an

excellent doctor. I've referred a few of my friends to him, and they've

been most pleased.

Congrats on the pregnancy. I'm TTC right now, but I've had 2 kids

pre-WLS and I'd be glad to chat with you along the way. It's always nice

to have someone close to home.

I had my first " prenatal " consult this past Wednesday. I met with my

doctor to discuss nutrition, vitamins, and exercise while I'm trying to

get pregnant, and for once I actually am pregnant (which hopefully will

be soon!). She said the most important thing I can do, is to take my

vitamins, and to eat well. I am taking " One-A'Day " vitamins, twice a day

:-) (much cheaper than the featured 'bariatric supplements', and has the

same amounts of vitamins), and then she gave me a prescription for

" Materna " prenatal vitamins to start taking as well. It's funny, but

they smell " vanilla " flavoured!

I was told to eat lots of veggies, and fruits, too. That's not hard!

Since having my surgery, I am not much of a meat eater. The most I have

is chicken in some way, shape or form. Usually though, I am eating

cheese or fruit.

What have you been doing for exercise since your surgery? I am an active

volleyball player. I was told I could continue playing volleyball. at

least until I was pregnant. After that we'll have to re-evaluate the

situation. Obviously I can't be running and diving across the floor, so

I may have to switch sports. Do you walk or swim at all? Or do water

aerobics? Those are wonderful for you. Easy on the body, but they are

also great exercises to help prepare your body for pregnancy, and

delivery. Walking helps strengthen the muscles you'll need for delivery,

and water aerobics will help limber your muscles up so that you can

relax easier.

From everything I've read here (although I am new to the group), the

consensus seems to be that it is definitely safe to have the baby even

though you've just had surgery. You just need to be extra careful about

your nutritional intake, and your vitamin supplements. You'll need to

focus on the baby, instead of on losing weight. I can't really respond

on the C-section though. That would really be up to your doctor, and

dependent on many things: i.e., how you've healed from your RNY (no

incisional hernias?) etc. I get the feeling most are having the babies

delivered normally though, so take heart :-)

Again, congratulations & best wishes!!!

Regards,

S :-)

Crosby

<http://www.mscrosby.com/> www.mscrosby.com

Lap-RNY 5/11/01

Mt. Auburn Hospital, MA

Height: 5'10 "

Starting weight: 380+

Current weight: 199! (I'm a " Onesie! " )

TTC

Hello

Hi All...

I am new to this group. I had an Open RNY with Dr. Thayer on

11/15/01. I have lost 101lbs to date... And I just found out that I

am pregant (6 weeks) OOPs... Any suggestions? Is it safe to have a

baby this soon? Will I need a C section? Help, I;m very nervous.

Thanks

Tammy

[Guest guest]

Hi Tammy congrats on your pregnancy. You should be fine. You will need to go to

an OB and just make sure you eat well and take your vitamins. There should be no

need for a csection unless you need one for other reasons but nothing to do with

having an rny.

I had an open rny in 1999 with Dr. Thayer. I just had a 9 lb 1 oz baby boy Feb

15th 2002 all natural, no drugs. So its quite possible

Congratulations wishing you a healthy and happy 9 months

Lyssa

Hello

Hi All...

I am new to this group. I had an Open RNY with Dr. Thayer on

11/15/01. I have lost 101lbs to date... And I just found out that I

am pregant (6 weeks) OOPs... Any suggestions? Is it safe to have a

baby this soon? Will I need a C section? Help, I;m very nervous.

Thanks

Tammy

[Guest guest]

Hi Tammy congrats on your pregnancy. You should be fine. You will need to go to

an OB and just make sure you eat well and take your vitamins. There should be no

need for a csection unless you need one for other reasons but nothing to do with

having an rny.

I had an open rny in 1999 with Dr. Thayer. I just had a 9 lb 1 oz baby boy Feb

15th 2002 all natural, no drugs. So its quite possible

Congratulations wishing you a healthy and happy 9 months

Lyssa

Hello

Hi All...

I am new to this group. I had an Open RNY with Dr. Thayer on

11/15/01. I have lost 101lbs to date... And I just found out that I

am pregant (6 weeks) OOPs... Any suggestions? Is it safe to have a

baby this soon? Will I need a C section? Help, I;m very nervous.

Thanks

Tammy

[Guest guest]

Hi Tammy congrats on your pregnancy. You should be fine. You will need to go to

an OB and just make sure you eat well and take your vitamins. There should be no

need for a csection unless you need one for other reasons but nothing to do with

having an rny.

I had an open rny in 1999 with Dr. Thayer. I just had a 9 lb 1 oz baby boy Feb

15th 2002 all natural, no drugs. So its quite possible

Congratulations wishing you a healthy and happy 9 months

Lyssa

Hello

Hi All...

I am new to this group. I had an Open RNY with Dr. Thayer on

11/15/01. I have lost 101lbs to date... And I just found out that I

am pregant (6 weeks) OOPs... Any suggestions? Is it safe to have a

baby this soon? Will I need a C section? Help, I;m very nervous.

Thanks

Tammy

[Guest guest]

Hey Jim. I can't wait to get you in here

>>> jpuglisi@... 02/05/03 11:29AM >>>

Just wanted to say hello to , You're the best! Looking

forward to meeting you this March (12-16th). Stay well.

[Guest guest]

Hey Jim. I can't wait to get you in here

>>> jpuglisi@... 02/05/03 11:29AM >>>

Just wanted to say hello to , You're the best! Looking

forward to meeting you this March (12-16th). Stay well.

[Guest guest]

Hey Jim. I can't wait to get you in here

>>> jpuglisi@... 02/05/03 11:29AM >>>

Just wanted to say hello to , You're the best! Looking

forward to meeting you this March (12-16th). Stay well.

[Guest guest]

Hello--

I hope you are off simvastatin, as statin drugs are know to cause

drug-induced myopathy in susceptible individuals, especially those

with pre-existing metabolic muscle disease. Usually it is reversible

when the drug is discontinued, but not always.

http://www.coloradohealthsite.org/CHNReports/statins_muscleproblems.h

tml

B

> I have just found this group. I was told very harshly by a neuro.

> last Thursday that I have a Mito. Cytopathy after getting copies

of

> the report its a complex 1 and complex IV deficiency and MRI etc

etc.

> Obviously MELAS but I haven't been told that yet. This neuro and I

> agreed to part company at this consultation and he has passed me

on

> to someone else another neuro genetist pal of his.

> As I live in England near London please could someone advise me if

I

> would be better to see a metabolic expert i.e. Inborn Error of

> Metabolism as I also have thyroid and possible adrenal problems

and

> kidney disease. Neuro.s seem to have one track minds can you walk

or

> not !!!!!!!

> Have already bought a bottle of CQ 10 but saw that ALA can

interfere

> with thyroid !!!!! Please I am searching for knowledge.

> We have noticed a considerable worsening of everything since I

went

> on simvastatin for high cholesteral 2 years ago . Had an

improvement

> this summer when we tried via internett T3 added to T4 for

thyroid.

> Also suffer with hypertension and beta blockers putme in bed.One

> caused fits. but other tablets don't work either.

> Does anyone know of a good mito. doc in London area

[Guest guest]

Welcome to the group. Is your name Gillian?

I live in the US so can't help with the doc question. My experience is that

my neuro. is my primary mito doc and I see other specialists to monitor and

treat the resulting symptoms such as kidney, endo, ect. This has worked well

for me. I also have an interest who deals with the non-mito stuff.

Statins for high cholesterol aren't recommended for those with mito. I was

on them before my diagnosis with little in the way of results. I now take

Borage Seed Oil (GLA) and garlic and my cholesterol is much lower than with

the statin.

Have you tried one of the newer kinds of blood pressure meds like Accupril?

This is working well for me. I also take a small dose of a beta blocker for

some mild heart problems.

laurie

>

> Reply-To:

> Date: Sun, 18 May 2003 15:13:10 -0000

> To:

> Subject: Hello

>

> I have just found this group. I was told very harshly by a neuro.

> last Thursday that I have a Mito. Cytopathy after getting copies of

> the report its a complex 1 and complex IV deficiency and MRI etc etc.

> Obviously MELAS but I haven't been told that yet. This neuro and I

> agreed to part company at this consultation and he has passed me on

> to someone else another neuro genetist pal of his.

> As I live in England near London please could someone advise me if I

> would be better to see a metabolic expert i.e. Inborn Error of

> Metabolism as I also have thyroid and possible adrenal problems and

> kidney disease. Neuro.s seem to have one track minds can you walk or

> not !!!!!!!

> Have already bought a bottle of CQ 10 but saw that ALA can interfere

> with thyroid !!!!! Please I am searching for knowledge.

> We have noticed a considerable worsening of everything since I went

> on simvastatin for high cholesteral 2 years ago . Had an improvement

> this summer when we tried via internett T3 added to T4 for thyroid.

> Also suffer with hypertension and beta blockers putme in bed.One

> caused fits. but other tablets don't work either.

> Does anyone know of a good mito. doc in London area

>

>

>

>

[Guest guest]

I live in Wisconsin so cannot advise on a doctor although there are some on

this list or the adultmito list who live in England.

The doctor who diagnosed my sister and subsequently myself and my son is a

pediatrician and internal medicine specialist by trade. He has a

pediatric/internal medicine clinic near Milwaukee and once a month he

travels up two hours to Green Bay to see people at the Heart Clinic in Green

Bay.

He was recommended to my sisters doctor when she went into a coma for 4 days

for the second time in two years. He suspected MELAS and was right.

I myself see a general practiioner who if she needs help consults with Dr

Tick. When I first got the diagnosis of MELAS from Dr Tick in 1997 he told

me I had to have someone up here (I live 2 hours from him) to monitor the

disease. I interviewed lots of doctors before I decided on my current one.

Some said they would not feel comfortable with the disease, some I just did

not like their attitude.

My general physisican now studied a lot in genetics and general metabolics.

She did send me to an endrochronologist for the diabetes though. But, I

finally convinced the endrocronologist that my blood sugar goes up when I

exercise. She never did believe that before as in a " normal " person

exercise makes it go down.

Dr Tick (the mito guy) said of course, melas does not respond to exercise.

My gp said it must have something to do with the lactic acid buildup

interferring with the insulin.

Anyway, I would start by seeing if there is some sort of nurse's group that

does doctor referrals for people new to the area and tell them what you are

looking for. Then try to get someone close to you.

It does not really matter too much the doctors specialty. What matters is

that they are willing to learn about mito, listen to you (your body tells

you what is wrong such as when to slow down), and that they are willing to

work with other doctors. Another thing I found is that they must accept the

fact that anything can happen with a mitochondrial disease. What is normal

in others is not normal for us.

One of the first things Dr Tick asked me when I went to see him for the

first time was to tell him of any " wierd " medical things that had happened

to me. Soon I came up with about 10 wierd infections and vaginal discharges

that were never explained. Along with tingling in my foot, numbness on my

left side, etc.

Well, good luck on your search.

Janet Sample

Hello

> >

> > I have just found this group. I was told very harshly by a neuro.

> > last Thursday that I have a Mito. Cytopathy after getting copies of

> > the report its a complex 1 and complex IV deficiency and MRI etc etc.

> > Obviously MELAS but I haven't been told that yet. This neuro and I

> > agreed to part company at this consultation and he has passed me on

> > to someone else another neuro genetist pal of his.

> > As I live in England near London please could someone advise me if I

> > would be better to see a metabolic expert i.e. Inborn Error of

> > Metabolism as I also have thyroid and possible adrenal problems and

> > kidney disease. Neuro.s seem to have one track minds can you walk or

> > not !!!!!!!

> > Have already bought a bottle of CQ 10 but saw that ALA can interfere

> > with thyroid !!!!! Please I am searching for knowledge.

> > We have noticed a considerable worsening of everything since I went

> > on simvastatin for high cholesteral 2 years ago . Had an improvement

> > this summer when we tried via internett T3 added to T4 for thyroid.

> > Also suffer with hypertension and beta blockers putme in bed.One

> > caused fits. but other tablets don't work either.

> > Does anyone know of a good mito. doc in London area

> >

> >

> >

> >

[Guest guest]

Diane,

I don’t know of anyone with this

type of problem…I hope that there are others who can help you get

connected. It helps to talk to others

with the same type of problem. I’m

sorry for this really hard time you are having.

Vivian

Hello

Hello, my name is Diane and i have a son who has a

rare form of MD.

This form of MD is called Emery-Dreifuss MD. This

is very similar to

Limb-Girdle MD. Most people with this diseas

experience contractures

and heart conduction problems. My son is 16 years

old and up until

now it had been thought that he had Limb-Girdle

MD. Due to a recent

visit to Children's Hospital of Phiadelphia it has

been confirmed

with 100 percent certainty that he has EDMD.

People with this form

of MD are missing a protein called Emerin. They

can be easily tested

for this by a simple buccal smear, (just a swab of

the mouth) which

test DNA for missing Emerin protein. However this

being rare it is

verty difficult to find anyone whom also is

affected by this. My son

is in a very unfortunate unique situation at

present and i am

desperatly in search of someone with this same

rare form of MD. If

you have EDMD or no of someone, please i would

love to talk with

you. dedeh56@.... My son has a very

severe neck contracture,

wich is going to involve two different surgeries.

Doctors have never

seen this kind of situation with such severe

contracture. My son is

left looking at the ceiling. The first surgery

they are going to cut

muscle and tendons (release them) He will be left

in halo for 6

weeks then will undergo second surgery to extend

things further to

previous unit rod in my sons back, up to skull. We

are hoping for a

better quality of life for my son, he is a bright

student. Anyone

out there please e-mail me. Would love to talk

with someone who can

relate to this situation. My son has been affected

with MD since age

2. Well, i thank you very much. I will check into

this forum from

time to time and would like to meet you all. I

also might mention

that i am hosting a chat on MDA web EDMD moms and

caregivers on

Sundays weekly 7-9 Eastern time, all are

welcome!!!! Again ty

Diane-coffeclubmom-dedeh56.

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