New to group

April 2, 2005

My name is Jodi, I am new to this site and have never used a message

board like this, so bear with me.

I have a 10 month old son who has a club foot. He has already had the

surgury to correct his deformity.

My question is....is it too late to use the doctors methods? My son is

now in an AFO and it seems to be working very well. He is now walking

around the furniture and with a walker.

I am worried now that his entire leg is getting turned in from crawling

with the AFO on. I feel like he should wear a bar at night at least and

his Ortho says it isn't necessary.

I'd like to hear if others have used the bar. Am I over reacting?

Any information would be greatly appreciated.

April 3, 2005

Hi Jodi, we're glad to have you with us.

It's hard to say if the Ponseti Method and/or the DBB could help to correct

your son or not. I think it might depend on how severe his foot was, and what

form of surgery he's already had, and what type of complications he may be

having now as a result.

The AFO is a big no-no in the Ponseti Method having been proven to complicate

the condition more than correct it - but that is after the foot was corrected

non-surgically. I don't know if it helps a surgically corrected foot or not.

Can you tell us more about your son's foot, how severe it was at birth and what

procedures the doctors have done to him so far? What does your doctor say is

his prognosis now? Is the doctor thinking he'll need more operations later? Is

he satisfied with the results? What does your doctor hope to achieve with the

AFO? What is his treatment plan from here on out?

What about you - no body knows your baby better than you do. Are YOU satisfied

with the results? Does his foot look and function normally and with out pain?

I think if you will give us more information we can better help you figure out a

plan of action if one is needed.

Glad you're here!

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

New to group

My name is Jodi, I am new to this site and have never used a message

board like this, so bear with me.

I have a 10 month old son who has a club foot. He has already had the

surgury to correct his deformity.

My question is....is it too late to use the doctors methods? My son is

now in an AFO and it seems to be working very well. He is now walking

around the furniture and with a walker.

I am worried now that his entire leg is getting turned in from crawling

with the AFO on. I feel like he should wear a bar at night at least and

his Ortho says it isn't necessary.

I'd like to hear if others have used the bar. Am I over reacting?

Any information would be greatly appreciated.

April 4, 2005

Welcome to the group Jodi,

You deffiantly are not over reacting. Trust your instincts if you

think something may wrong, you are most likely right. My best

advice for you is to seek a second opinion, it never hurts. It is

deffianlty not too late to change methods. The sooner you do so the

better. I didn't change my son's treatment to the ponseti method

until age 2, but wish I listened to the other partents who urged me

to go for another opinion earlier. I was so worried about how I was

going to pay for a second/third opinion with a ponseti doctor since

my insurance company said they wouldn't pay that I didn't take my

son until age 2. If I could go back and do it over I would have

just went and not worried about the financial end. My son had open

surgery at 8 weeks old. And we did AFO's etc. What kind of surgery

did your son have and if you don't mind which doctor and/or hospital

does your son have treatment with? What state are you from? My

son's story is at http://www.geocities.com/chele323232 Again

welcome to the group everyone here is so great!

Michele Yoder

Collin 8-24-01

April 4, 2005

You are not over reacting. My son was born with bilateral club feet.

We went through the manipulations/castings and now he is wearing the

DBB which is connected by a bar. It is never too late to ask

questions. Was your son treated by using the ponseti method?

>

> My name is Jodi, I am new to this site and have never used a

message

> board like this, so bear with me.

>

> I have a 10 month old son who has a club foot. He has already had

the

> surgury to correct his deformity.

>

> My question is....is it too late to use the doctors methods? My

son is

> now in an AFO and it seems to be working very well. He is now

walking

> around the furniture and with a walker.

>

> I am worried now that his entire leg is getting turned in from

crawling

> with the AFO on. I feel like he should wear a bar at night at

least and

> his Ortho says it isn't necessary.

>

> I'd like to hear if others have used the bar. Am I over reacting?

>

> Any information would be greatly appreciated.

April 6, 2005

> Hi Jodi, we're glad to have you with us.

>

> It's hard to say if the Ponseti Method and/or the DBB could help

to correct your son or not. I think it might depend on how severe

his foot was, and what form of surgery he's already had, and what

type of complications he may be having now as a result.

>

> The AFO is a big no-no in the Ponseti Method having been proven to

complicate the condition more than correct it - but that is after

the foot was corrected non-surgically. I don't know if it helps a

surgically corrected foot or not.

>

> Can you tell us more about your son's foot, how severe it was at

birth and what procedures the doctors have done to him so far?

What does your doctor say is his prognosis now? Is the doctor

thinking he'll need more operations later? Is he satisfied with the

results? What does your doctor hope to achieve with the AFO? What

is his treatment plan from here on out?

>

> What about you - no body knows your baby better than you do. Are

YOU satisfied with the results? Does his foot look and function

normally and with out pain?

>

> I think if you will give us more information we can better help

you figure out a plan of action if one is needed.

>

> Glad you're here!

> ee, mother of two bcf boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>

> New to group

>

> My name is Jodi, I am new to this site and have never used a

message

> board like this, so bear with me.

>

> I have a 10 month old son who has a club foot. He has already had

the

> surgury to correct his deformity.

>

> My question is....is it too late to use the doctors methods? My

son is

> now in an AFO and it seems to be working very well. He is now

walking

> around the furniture and with a walker.

>

> I am worried now that his entire leg is getting turned in from

crawling

> with the AFO on. I feel like he should wear a bar at night at

least and

> his Ortho says it isn't necessary.

>

> I'd like to hear if others have used the bar. Am I over reacting?

>

> Any information would be greatly appreciated.

>

April 6, 2005

When Brenden was born we had several doctors (neo natal doctors) who

were friends of my Mom's look at his foot as well as several

pediatricians. All thought that it was not a club foot and said it

was positional. This still didn't satisfy my husband and I. Though

we thought we might be overreacting since our daughters feet were

both turned inward at birth, so we thought perhaps it was just like

big sisters. However, Brendens foot was much more severe, turned

inwards and up, though very flexible. I think this is what screwed

up the doctors, the fact that it was flexible.

All the doctors said to wait a few weeks and see how the foot

looked. At his 2 week check up I asked to get the foot xrayed as I

was really worrying about it. The doctor was hesitant and thought I

was over reacting and sent me for the xray to get me out of his

hair. The results came back and the doctor still said he didn't

think it was a club foot and to wait one more month. So at his one

month check up we saw a different doctor and asked if she would

please let us see an orthopedic surgeon. We had to wait another 3

weeks before we saw the ortho.

Right away the doctor, (Dr. Lee out of St. s

hospital in Detroit, MI) put Brenden in a cast. We went through a

million casts. Brenden could wiggle himself out of a cast every

other day. He had 8 weeks of casting, then another 8 weeks of

taping. That was brutal on his skin. The taping really set him back.

We were making good progress with the casting, and the taping seemed

to make it worse and more ridgid. Dr. Lee decided we needed to do

surgery. We got a second opinion from a doctor at Childrens Hospital

who said that he had a " bad " foot and agreed that surgery was the

way to go. Brenden was 6 months old when he had the surgery. I don't

have the techical words for the surgery, but basically they clipped

his achiles (sp?) tendon and also clipped a tendon in the inner part

of his arch of his foot. The foot can now very easily move from side

to side, but the up and down motion is still very limited. He was in

a cast for 4 weeks after the surgery, then he had about 2 months of

taping after that before getting his AFO, which he is now in.

Dr. Lee is happy with the progress, but I am still worried. The foot

still looks odd and he still wants to walk on the outside part of

his foot. The foot is also much smaller that his good foot. Plus it

seems like his whole leg is turning in. I believe largly due to the

fact that he is crawling and his foot has no where else to go with

the AFO on.

It just seems like we shoudl be doing more physical therapy type

work with it. I'm wondering if I can do both our Doctors method and

Dr Ponsetis.

> Hi Jodi, we're glad to have you with us.

>

> It's hard to say if the Ponseti Method and/or the DBB could help

to correct your son or not. I think it might depend on how severe

his foot was, and what form of surgery he's already had, and what

type of complications he may be having now as a result.

>

> The AFO is a big no-no in the Ponseti Method having been proven to

complicate the condition more than correct it - but that is after

the foot was corrected non-surgically. I don't know if it helps a

surgically corrected foot or not.

>

> Can you tell us more about your son's foot, how severe it was at

birth and what procedures the doctors have done to him so far?

What does your doctor say is his prognosis now? Is the doctor

thinking he'll need more operations later? Is he satisfied with the

results? What does your doctor hope to achieve with the AFO? What

is his treatment plan from here on out?

>

> What about you - no body knows your baby better than you do. Are

YOU satisfied with the results? Does his foot look and function

normally and with out pain?

>

> I think if you will give us more information we can better help

you figure out a plan of action if one is needed.

>

> Glad you're here!

> ee, mother of two bcf boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>

> New to group

>

> My name is Jodi, I am new to this site and have never used a

message

> board like this, so bear with me.

>

> I have a 10 month old son who has a club foot. He has already had

the

> surgury to correct his deformity.

>

> My question is....is it too late to use the doctors methods? My

son is

> now in an AFO and it seems to be working very well. He is now

walking

> around the furniture and with a walker.

>

> I am worried now that his entire leg is getting turned in from

crawling

> with the AFO on. I feel like he should wear a bar at night at

least and

> his Ortho says it isn't necessary.

>

> I'd like to hear if others have used the bar. Am I over reacting?

>

> Any information would be greatly appreciated.

>

April 7, 2005

Jodi.

Wow, your son has been through alot. I truly believe you are currently in

the wrong hands, especially if the condition seemed mild in the first

place.

I have never heard of taping and I am still unclear on what you mean

exactly. Over time, we have all proven (is that a word?) that AFO's are

not the way to go with clubfoot treatment. If his foot was never fully

corrected, the AFO's will do nothing to improve it, in fact his foot will

more than likely regress. I strongly feel you should get a second opinion

with a highly recommended Ponseti qualified doctor. You may want to think

about leaving the current doctor who seems to not do anything to help your

sons foot thus far.

Sorry to be so harsh, but I feel for persons/babies like yourself who have

been through hell and back and still don't have results. It makes me want

to scream that these poor babies go through so much when they don't have

to. I can't believe this doctor even claimed he knew what he was doing.

He is waaaaaaaaaaaayy off the mark! (sorry, I'm PMSing )

Please consider a second opinion, maybe with the master himself.

Hang in there, you will find the right doctor and be much happier.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

fax

April 7, 2005

Enough to make you scream, some of these doctors. Your son's foot sounds just

like my son's. Very flexible at birth but still very twisted. My doctor was

out of town so some one else delivered my baby (which was better because my

doctor is not my favorite and yes we switched) he refered us to an ortho. They

both said positional positional positonal. We casted from day one for 4 months.

And Tenny kicked his way out of many casts, slipped others. He was miserable.

The only way I an explain the casting was force the foot and hold it while the

baby screams. We saw a bit of improvement for the first 2 months so we were

encouraged, but after months 3 I was ready to be done, nothing was changing. We

are in Idaho and there aren't many pediatric othos in the state but we got

referred to one and into see him by 41/2 months. Here our story differs, this

ortho said the magic word, " Ponseti " . We checked it out and him out and

amazingly enough he is certified. By the time we started with the Ponseti

method we no longer had a flexible foot. It was very stiff and very twisted.

But five weeks of casting and a tenotomy later, it is amazing. We have a foot.

So what I am trying to say and not saying it, get another opinion from a Ponseti

doctor. There may still be something they can do. They way they manipulate a

foot is beautiful. It can't hurt, it can only help. There are enough people on

this board that someone can direct you to a doctor.

mom to Tenny rt. cf 7/15/04

FAB 23/7 1 months left!!!!!

New to group

>

> My name is Jodi, I am new to this site and have never used a

message

> board like this, so bear with me.

>

> I have a 10 month old son who has a club foot. He has already had

the

> surgury to correct his deformity.

>

> My question is....is it too late to use the doctors methods? My

son is

> now in an AFO and it seems to be working very well. He is now

walking

> around the furniture and with a walker.

>

> I am worried now that his entire leg is getting turned in from

crawling

> with the AFO on. I feel like he should wear a bar at night at

least and

> his Ortho says it isn't necessary.

>

> I'd like to hear if others have used the bar. Am I over reacting?

>

> Any information would be greatly appreciated.

>

April 7, 2005

Jodi,

I replied to you personally, but I will post here just in case. I am in

Michigan, I have a son with bilateral clubfeet. We too saw your doctor. He is

no longer our doctor. ( If you want to know more email me privately, I don't

like discussing that here by name). We see a doctor at Children's Hospital in

Detroit by the name of Dr. Mendelow. He is wonderful. He has been using the

ponseti method for many years. He follows the protocol exactly. He is not on

the certified list, his explanation for not being on the list is not enough time

to do all the paper work necessary to be on the approved list. And as some will

attest here, being on the approved list doesn't necessary mean that they are

following the protocol, so don't let that throw you for a loop.

Please feel free to contact me. We can meet up so you can see my son's feet if

you would like. My son is now 2 1/2 years old very active started walking at 10

months old. He is doing great, so please don't worry about offending your

current doctor, go see someone else who uses the Ponseti Method.

Carolyn and Bruce (11-17-02)

New to group

>

> My name is Jodi, I am new to this site and have never used a

message

> board like this, so bear with me.

>

> I have a 10 month old son who has a club foot. He has already had

the

> surgury to correct his deformity.

>

> My question is....is it too late to use the doctors methods? My

son is

> now in an AFO and it seems to be working very well. He is now

walking

> around the furniture and with a walker.

>

> I am worried now that his entire leg is getting turned in from

crawling

> with the AFO on. I feel like he should wear a bar at night at

least and

> his Ortho says it isn't necessary.

>

> I'd like to hear if others have used the bar. Am I over reacting?

>

> Any information would be greatly appreciated.

>

April 7, 2005

Thank you so much for your help. I just have this feeling in my gut

that it isn't right and that we could be helping him in a better

way. The doctor is happy with the progress, but I feel like I have a

limited window to get this corrected and I don't want to miss it. I

feel like I have already lost time by not starting treatment at

birth.

Any ideas how I would find a Ponseti doctor in my area? I am in the

Detroit area.

> Jodi.

> Wow, your son has been through alot. I truly believe you are

currently in

> the wrong hands, especially if the condition seemed mild in the

first

> place.

> I have never heard of taping and I am still unclear on what you

mean

> exactly. Over time, we have all proven (is that a word?) that

AFO's are

> not the way to go with clubfoot treatment. If his foot was never

fully

> corrected, the AFO's will do nothing to improve it, in fact his

foot will

> more than likely regress. I strongly feel you should get a second

opinion

> with a highly recommended Ponseti qualified doctor. You may want

to think

> about leaving the current doctor who seems to not do anything to

help your

> sons foot thus far.

>

> Sorry to be so harsh, but I feel for persons/babies like yourself

who have

> been through hell and back and still don't have results. It makes

me want

> to scream that these poor babies go through so much when they

don't have

> to. I can't believe this doctor even claimed he knew what he was

doing.

> He is waaaaaaaaaaaayy off the mark! (sorry, I'm PMSing )

>

> Please consider a second opinion, maybe with the master himself.

>

> Hang in there, you will find the right doctor and be much happier.

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> fax

>

April 7, 2005

Thank you so much for your encouragement! I can't wait to find a

Ponseti doctor in my area!!!

> > Hi Jodi, we're glad to have you with us.

> >

> > It's hard to say if the Ponseti Method and/or the DBB could

help

> to correct your son or not. I think it might depend on how

severe

> his foot was, and what form of surgery he's already had, and

what

> type of complications he may be having now as a result.

> >

> > The AFO is a big no-no in the Ponseti Method having been

proven to

> complicate the condition more than correct it - but that is

after

> the foot was corrected non-surgically. I don't know if it

helps a

> surgically corrected foot or not.

> >

> > Can you tell us more about your son's foot, how severe it was

at

> birth and what procedures the doctors have done to him so far?

> What does your doctor say is his prognosis now? Is the doctor

> thinking he'll need more operations later? Is he satisfied with

the

> results? What does your doctor hope to achieve with the AFO?

What

> is his treatment plan from here on out?

> >

> > What about you - no body knows your baby better than you do.

Are

> YOU satisfied with the results? Does his foot look and function

> normally and with out pain?

> >

> > I think if you will give us more information we can better

help

> you figure out a plan of action if one is needed.

> >

> > Glad you're here!

> > ee, mother of two bcf boys:

> > - NON Ponseti Method Club Foot Disaster

> > Everett - Dr. Ponseti Success Story

> >

> > New to group

> >

> > My name is Jodi, I am new to this site and have never used a

> message

> > board like this, so bear with me.

> >

> > I have a 10 month old son who has a club foot. He has already

had

> the

> > surgury to correct his deformity.

> >

> > My question is....is it too late to use the doctors methods?

My

> son is

> > now in an AFO and it seems to be working very well. He is now

> walking

> > around the furniture and with a walker.

> >

> > I am worried now that his entire leg is getting turned in from

> crawling

> > with the AFO on. I feel like he should wear a bar at night at

> least and

> > his Ortho says it isn't necessary.

> >

> > I'd like to hear if others have used the bar. Am I over

reacting?

> >

> > Any information would be greatly appreciated.

> >

April 7, 2005

He went through a series of casts and then ended up needing surgery. It rather

blind sided us as the doctor was happy with his progress for the most part. I

just want to make sure we do the right thing while he's still so small. What is

a DBB? My son is currently in an AFO which sounds like (according to most of the

people on this site) is not the way to go!

garrisontitle@...> wrote:

You are not over reacting. My son was born with bilateral club feet.

We went through the manipulations/castings and now he is wearing the

DBB which is connected by a bar. It is never too late to ask

questions. Was your son treated by using the ponseti method?

>

> My name is Jodi, I am new to this site and have never used a

message

> board like this, so bear with me.

>

> I have a 10 month old son who has a club foot. He has already had

the

> surgury to correct his deformity.

>

> My question is....is it too late to use the doctors methods? My

son is

> now in an AFO and it seems to be working very well. He is now

walking

> around the furniture and with a walker.

>

> I am worried now that his entire leg is getting turned in from

crawling

> with the AFO on. I feel like he should wear a bar at night at

least and

> his Ortho says it isn't necessary.

>

> I'd like to hear if others have used the bar. Am I over reacting?

>

> Any information would be greatly appreciated.

April 8, 2005

Jodi,

Have you been to the official Ponseti website? You can read alot of info

there and find a qualified doctor closest to you. There is one doctor in

Michigan, but not in Detroit. His name is Dr. . Maybe

someone on this site uses him and can chime in with more info about him.

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

Your doctor definately doesn't have a clue if he thinks your son is making

good progress. According to you, he's not. Mommy is always right.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

fax

April 8, 2005

I just want to echo 's words. I'm sorry this is so long, but

it's so important that you know what so many of us have gone through

with doctors who are not trained in the Ponseti method.

Our son was born with bilateral clubfoot. Our pediatrician sent us

to a local orthopedic surgeon. BIG MISTAKE! First of all this guy

does not specialize in pediatrics and second he doesn't use the

Ponseti method. He put casts on my son at 4 days old and literally

pulled his legs straight and casted them. Not only did my son scream

while he was doing it, he cried unconsolably for a long time

afterwards. To this day I can't get that scene out of my mind.

I should've run away from this doctor as fast as I could, but I

honestly didn't know any better. We didn't know he had clubfeet

until he was born and we just assumed that any orthopedic surgeon

would be able to correct his feet. We went through many casts, 6-8 I

believe, and he cried at each visit. He had bruises on his ankles

where the doctor pushed the casts into his ankles while trying to

force his foot straight. I could kick myself for not researching on

the internet sooner.

At three months he put in orthopedic shoes and even I could

see his feet were not corrected. They were better, but still

deformed. After 6 weeks in the shoes the doctor claimed his feet had

relapsed, but honestly they were never corrected in the first place.

At six months of age he x-rayed 's feet and told us he would

need surgery. Luckily he referred us to a surgeon who specialized in

pediatrics. This doctor agreed he needed surgery and after taking

two months to rest and go on vacation, we were scheduled for

surgery. This wasn't just tendon cutting surgery this was three

hour, put pins in the bones surgery.

Three days before his scheduled surgery I went on the internet to

find information about the surgery and found Dr. Ponseti's site. I

came to this group and asked what to expect from surgery and about

20 people told me not to have the surgery and find a Ponseti doctor.

By this time my son was 9 months old. I was afraid he was too old to

be helped by a Ponseti doctor, but I e-mailed Dr. Ponseti and the

dear man called me at home. (I'm crying as I type just thinking

about him taking time out from his busy schedule to call me and

reassure me). He assured me my son's feet could be corrected without

surgery and if I couldn't find a doctor near me to come see him in

Iowa.

It took us a month to get an appointment with a Ponseti doctor at

Shriner's Hospital in Springfield, MA. Because it was over 4 hours

each way we took Angel Flights for free down and back. We met

wonderful pilots who loved to fly and had the means to donate their

time and planes to fly patients to their appointments. It was a huge

hassle to travel all that way and Shriner's is big and the wait to

see the doctor was always long and tedious. But after six casts,

which never left bruises or hurt in any way, the bones in his

feet were straightened. We did need a tenotomy and he had to stay

over night in the hospital, but the surgery itself took less than 20

minutes.

He is now almost 17 months old and his feet are perfect. He's not

standing on his own yet and is having physical therapy for that and

he's in the dbb 16 hours a day. But I can't tell you the incredible

difference between the Ponseti doctor and the other two doctors we

saw. It's the difference in the method of treatment and the fact

that you can see progress and I had the sense while watching him

manipulate his feet that he really did know what he was doing.

This Shriner's Hospital does clinics in Maine, where we live, every

three months for all of their patients who live in Maine. I was

thrilled to see an orthopedic surgeon from the hospital that held

the clinic observing while the doctor explained how the POnseti

method straightens clubfoot without surgery. Now that 's done

with casting we have regular check-ups at these clinics so we don't

have to travel as far. The last time we went we waited TWO hours to

see the doctor in a waiting room full of children and not ONE TOY.

Even with the hassle of waiting, the previous hassle of flying 350

miles each way each week, I wouldn't trade doctors for anything. I

only wish I'd known about Dr. Ponseti when was born. And I

wouldn't have hesitated for a minute to go to Iowa if our Ponseti

doctor hadn't been able to correct 's feet.

Good luck to you and as everyone else has said, find a Ponseti

doctor even if you have to travel a long way. You won't regret it.

and bilateral cf 11/10/03 dbb 16/7

> Jodi.

> Wow, your son has been through alot. I truly believe you are

currently in

> the wrong hands, especially if the condition seemed mild in the

first

> place.

> I have never heard of taping and I am still unclear on what you

mean

> exactly. Over time, we have all proven (is that a word?) that

AFO's are

> not the way to go with clubfoot treatment. If his foot was never

fully

> corrected, the AFO's will do nothing to improve it, in fact his

foot will

> more than likely regress. I strongly feel you should get a second

opinion

> with a highly recommended Ponseti qualified doctor. You may want

to think

> about leaving the current doctor who seems to not do anything to

help your

> sons foot thus far.

>

> Sorry to be so harsh, but I feel for persons/babies like yourself

who have

> been through hell and back and still don't have results. It makes

me want

> to scream that these poor babies go through so much when they

don't have

> to. I can't believe this doctor even claimed he knew what he was

doing.

> He is waaaaaaaaaaaayy off the mark! (sorry, I'm PMSing )

>

> Please consider a second opinion, maybe with the master himself.

>

> Hang in there, you will find the right doctor and be much happier.

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> fax

>

April 8, 2005

,

I remember when you came on board. Has it really been 8 months already? I

am really glad to hear 's feet are great and everything has worked

out for you.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

fax

April 8, 2005

I can't believe it's been 8 months, but it has! When we first

started with Shriner's it seemed so overwhelming, but now it's all

history and we're moving on to getting ready to walk! I'm so happy I

found this group and every time I look at his perfect feet feel so

grateful to Dr. Ponseti and our Ponseti doctor.

and 11/10/03 bilateral clubfoot dbb 16/7

> ,

> I remember when you came on board. Has it really been 8 months

already? I

> am really glad to hear 's feet are great and everything has

worked

> out for you.

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> fax

>

April 8, 2005

Yes, I went to the site last night and I saw Dr. 's name. I also got a name

of a doctor at Childrens hospital who isn't registered with Ponseti, however

aparently follows the process to a T. I will interview both men. I can't wait to

get started!!!

Thanks for the advise!!!

susan.shook@... wrote:

Jodi,

Have you been to the official Ponseti website? You can read alot of info

there and find a qualified doctor closest to you. There is one doctor in

Michigan, but not in Detroit. His name is Dr. . Maybe

someone on this site uses him and can chime in with more info about him.

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

Your doctor definately doesn't have a clue if he thinks your son is making

good progress. According to you, he's not. Mommy is always right.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

fax

April 9, 2005

,

Thanks for sharing your story. It is a great testimonial for the

Ponseti method.

> > Jodi.

> > Wow, your son has been through alot. I truly believe you are

> currently in

> > the wrong hands, especially if the condition seemed mild in the

> first

> > place.

> > I have never heard of taping and I am still unclear on what you

> mean

> > exactly. Over time, we have all proven (is that a word?) that

> AFO's are

> > not the way to go with clubfoot treatment. If his foot was never

> fully

> > corrected, the AFO's will do nothing to improve it, in fact his

> foot will

> > more than likely regress. I strongly feel you should get a

second

> opinion

> > with a highly recommended Ponseti qualified doctor. You may want

> to think

> > about leaving the current doctor who seems to not do anything to

> help your

> > sons foot thus far.

> >

> > Sorry to be so harsh, but I feel for persons/babies like yourself

> who have

> > been through hell and back and still don't have results. It

makes

> me want

> > to scream that these poor babies go through so much when they

> don't have

> > to. I can't believe this doctor even claimed he knew what he was

> doing.

> > He is waaaaaaaaaaaayy off the mark! (sorry, I'm PMSing )

> >

> > Please consider a second opinion, maybe with the master himself.

> >

> > Hang in there, you will find the right doctor and be much

happier.

> >

> > Shook

> > Retail Operations Manager/Baking Instructor

> > Vie de France Yamazaki, Inc.

> > 2070 Chain Bridge Rd. Suite 500

> > Vienna, VA 22182

> > x374

> > fax

> >

April 9, 2005

>

> ,

>

> Thanks for sharing your story. It is a great testimonial for the

> Ponseti method.

>

I feel it's so important get the word out to people that the Ponseti

method is so much better than any other method. The best way to do

that is to share our stories. I wish there was some way to get the

word out to everyone in the pediatriac medical profession. I tell

everyone we come in contact with that has anything to do with the

medical profession.

April 9, 2005

Tristian- I can't figure out which email you are, but thank you so much for your

story. I can't wait to see a Ponseti doctor. I haven't been able to think of

much else for the last week since I came to this site. There are 2 doctors

locally. I want to interview both before I decide who I am going to go with!!!!

Thank you!!!!!

Egbert martinegbert@...> wrote:

,

Thanks for sharing your story. It is a great testimonial for the

Ponseti method.

> > Jodi.

> > Wow, your son has been through alot. I truly believe you are

> currently in

> > the wrong hands, especially if the condition seemed mild in the

> first

> > place.

> > I have never heard of taping and I am still unclear on what you

> mean

> > exactly. Over time, we have all proven (is that a word?) that

> AFO's are

> > not the way to go with clubfoot treatment. If his foot was never

> fully

> > corrected, the AFO's will do nothing to improve it, in fact his

> foot will

> > more than likely regress. I strongly feel you should get a

second

> opinion

> > with a highly recommended Ponseti qualified doctor. You may want

> to think

> > about leaving the current doctor who seems to not do anything to

> help your

> > sons foot thus far.

> >

> > Sorry to be so harsh, but I feel for persons/babies like yourself

> who have

> > been through hell and back and still don't have results. It

makes

> me want

> > to scream that these poor babies go through so much when they

> don't have

> > to. I can't believe this doctor even claimed he knew what he was

> doing.

> > He is waaaaaaaaaaaayy off the mark! (sorry, I'm PMSing )

> >

> > Please consider a second opinion, maybe with the master himself.

> >

> > Hang in there, you will find the right doctor and be much

happier.

> >

> > Shook

> > Retail Operations Manager/Baking Instructor

> > Vie de France Yamazaki, Inc.

> > 2070 Chain Bridge Rd. Suite 500

> > Vienna, VA 22182

> > x374

> > fax

> >

April 11, 2005

Jodi,

Keep us updated.

Good luck.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

fax

January 26, 2010

Barb,

I have been on SCD for almost 30 days, although off and on from

October last year. My complaints are more brain-gut. I don’t

have many of the digestive issues (ie. Diarrhea and bleeding) that bring many

folks to this diet. The good news being that I can tolerate almost all of SCD

legal foods early on. That being said, this diet has already

done wonders for me. My brain fog and fatigue have faded rapidly, and my

mental functioning has improved incredibly. The digestive upsets I have

had … C, gas, bloating, some minor pain and discomfort have all but been eradicated.

Elaine has an entire chapter from BTVC devoted to brain-gut issues and wrote

that these problems often clear up before the digestive ones. I have

known for years that diet was the key but having a hard time finding the right

one. If I did too low carb it never worked for me. But if I did too

much complex carb that didn’t work either. Yogurt, honey and fruit

have always worked well in my body. Eliminating discacharides and polysaccharides

has been an amazing experience for me. Eliminating only wheat was

never enough. For almost twenty years I have had tests that showed I wasn’t

absorbing nutrients etc When I read BTVC it all made sense.

My recommendation is that if you ended up here, give the diet a

try, I think Elaine recommends at least 30 days in the book. If whatever

you’re symptoms are are alleviated or somewhat improved that would be the

motivation to stick to the diet and also the “proof in the pudding”,

i.e. that this is a good way of eating for you,

Good luck,

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of multitoed

Sent: Tuesday, January 26, 2010 4:24 PM

To: BTVC-SCD

Subject: new to group

Hi everyone,

I'm new here and just started the diet. My inflammation stems from Lyme and I

have CFS and fibromyalgia. I have been fighting candida for a while and I don't

think I have it anymore. I have a lot of pain and inflammation and fatigue but

I don't have the runs. Was once diagnosed with diverticulitis but CT scan

showed that was wrong. Haven't had a colonoscopy but I don't think I have a

specific disease. So I'm not totally sure I'm on the right diet, because the

book keeps talking about diarrhea. Any opinions? Is there anyone on this list

who just has dysbiosis and not CD or other diseases? Anyone with CFS and/or

Lyme?

Also, does anyone know if agave nectar is allowed? It's low glycemic and used

by diabetics.

And, what about whey protein isolate? I've always heard it was really good for

the gut lining. It has almost zero lactose. Whey protein concentrate has a lot.

But if there is some rule about isolate, I'd like to know it.

Thanks! Nice to meet you all, you are a great inspiration to stay on this diet!

Barb

January 26, 2010