Re: Just started Ponseti method and need reassurance

[Guest guest]

HI Manda and welcome! My litte guy started out with a modified version of the

Ponseti which failed miserably. When he was four months old, I switched to a

properly trained Ponseti doctor and it has gone wonderfully from there! The

last visit we went on about a week ago, the doctor gave a very good report.

Hayden has atypical bilateral cf and did require the tenotomy, which was very

simple and quick. His feet were a little stubborn to correct, but I feel that

it would have gone much quicker had we seen this doctor from the very beginning

as his atypical problem was caused by many slipping casts at the other

hospital. Rest assured that you are doing the right thing for your baby and

that treatment will go quicker than you think. And to not have surgery

performed on your son is the bonus in addition to a baby who has no pain and

can walk on beautiful straight little feet! Congratulations on your son and

please keep us up to date!

mandaneen wrote: Hi

We have a six month old son who has moderate left foot talipes. We

were about to undertake full release surgery when on seeking a second

opinion we were recommended the Ponseti method of treatment. What a

wonderful surprise to find out there is an alternative way.

We are now starting the Ponseti method through a new Ortho and physio.

I'd really like to hear from parents that have been through this method

of treatment and what the results were like.

Much appreciated

manda

[Guest guest]

hi manda..

the ponseti method is the way to go. my son is already 5 years old. it's just so

bad that he had surgery already before we discovered the ponseti method. but

fortunately it has been doing wonders for him.

what's important is, your doctor should really be ponseti trained.

hope this helps.

cynthia

mandaneen wrote: Hi

We have a six month old son who has moderate left foot talipes. We

were about to undertake full release surgery when on seeking a second

opinion we were recommended the Ponseti method of treatment. What a

wonderful surprise to find out there is an alternative way.

We are now starting the Ponseti method through a new Ortho and physio.

I'd really like to hear from parents that have been through this method

of treatment and what the results were like.

Much appreciated

manda

[Guest guest]

Great decision to go with the Ponseti method! I, too, have a 6 month old son who

started the Ponseti method at 2 weeks old. He had a rather severe left clubfoot

and now you would never be able to tell he was born with a clubfoot. His little

foot is perfect. If you would like, I can send you some pictures of the

treatment process from start to finish.

mandaneen wrote: Hi

We have a six month old son who has moderate left foot talipes. We

were about to undertake full release surgery when on seeking a second

opinion we were recommended the Ponseti method of treatment. What a

wonderful surprise to find out there is an alternative way.

We are now starting the Ponseti method through a new Ortho and physio.

I'd really like to hear from parents that have been through this method

of treatment and what the results were like.

Much appreciated

manda

[Guest guest]

Hi Manda

Welcome to the group and I'm glad you found out about the Ponseti method before

it was too late.

The method is fantastic, our son had very severe (scored 6/6 on both feet on the

ratings) clubfoot but he's now 14 months old and his feet are fully corrected.

He wears the boots and bars for night and naptimes and the rest of the time he's

racing around like any other baby.

Although the method calls for parents to ensure boots and bars are worn at

nighttimes until they are at least 4 this really isn't a big deal. I can't

actually believe how unworried by it all our son is and I think 4 years of a bit

more effort now is worth it compared to a life where our son could have very

painful and crippling feet due to surgery.

I would also add it is really important to get the right Ponseti doctor to treat

your son's feet. Since you are starting slightly later than normal with the

method you don't really want to waste time by getting a doctor who doesn't quite

do thing properly. Our son was first treated by our local hospital who had ust

started offering the Ponseti method (our son was actually their first child they

treated) and unfortunatley due to their lack of experience they just couldn't

correct his feet enough so when he was 5 month old we transfered to a fully

certified and highly recommended (via this group) Ponseti doctor who changed our

sons life completely and who we will always be grateful to for fully correcting

our son's clubfeet.

Although you are starting the Ponseti method at 6 months you shouldn't really

have any problems as many parents in this group have found the method at a later

date and their children's feet are great.

Where abouts in the world are you and which doctor are you planning to use for

your son's treatment? If you don't mind letting us know I'm sure someone can

tell you if your doctor / hospital is considered good at correcting clubfoot.

Also any other questions, just ask. The parents that are part of this group

really are some of the most intelligent and highly educated parents you will

ever find with regards to clubfoot. They helped me find my son the best

possible treatment and it's really down to them that everything has turned out

OK now.

Kathy:)

mandaneen wrote: Hi

We have a six month old son who has moderate left foot talipes. We

were about to undertake full release surgery when on seeking a second

opinion we were recommended the Ponseti method of treatment. What a

wonderful surprise to find out there is an alternative way.

We are now starting the Ponseti method through a new Ortho and physio.

I'd really like to hear from parents that have been through this method

of treatment and what the results were like.

Much appreciated

manda

[Guest guest]

Hi there Manda,

Congratulations on seeking a second opinion, and for choosing the Ponseti

method. I'm sure you won't be disappointed. This is the most incredible method

of treatment, and you will start to see results immediately. My son was born

with severe bilateral clubfeet, and was treated with the Ponseti method. He

needed a few extra casts, and a second tenotomy, but his feet are marvellous

now, and he has had no invasive surgery. You would never tell by looking that he

ever had clubfeet. I asked my doctor if he would have needed surgery if we had

not used the Ponseti method, and he said absolutely, that if it had been 6 years

ago, (which was before he learned about the Ponseti method) he would have

operated on his feet at 3 months old. My sons feet were so stiff that even the

doctor was not certain of the outcome, but it has been wonderful to see the

fantastic results.

You can rest assured that you have chosen a wonderful option for your baby,

and there is an excellent chance that the results will be better than you can

imagine!

Good luck!!

wrote:

Hi

We have a six month old son who has moderate left foot talipes. We

were about to undertake full release surgery when on seeking a second

opinion we were recommended the Ponseti method of treatment. What a

wonderful surprise to find out there is an alternative way.

We are now starting the Ponseti method through a new Ortho and physio.

I'd really like to hear from parents that have been through this method

of treatment and what the results were like.

Much appreciated

manda

[Guest guest]

Hi Manda

Well done on going for a second opinion and deciding to go with the

Ponseti method. It makes my heart break when i think children are

still being offered surgery as the first treatment option for

clubfoot. There's just no need for it nowadays. Some children do

need surgery, but the majority of children - in the 90% range have

wonderful success with the Ponseti method.

Anyway, our son was treated using the Ponseti method, with great

results...his story, and pics of his feet, is at www. clubfeet. co.

uk (no spaces!)

I hope this helps,

Good luck with everything,

Stella

>

> Hi

>

> We have a six month old son who has moderate left foot talipes.

We

> were about to undertake full release surgery when on seeking a

second

> opinion we were recommended the Ponseti method of treatment. What

a

> wonderful surprise to find out there is an alternative way.

>

> We are now starting the Ponseti method through a new Ortho and

physio.

> I'd really like to hear from parents that have been through this

method

> of treatment and what the results were like.

>

> Much appreciated

>

> manda

>

[Guest guest]

Hi Manda,

My son Alister was born with a right clubfoot and has

been treated with the Ponseti method here in the UK.

He had 7 weekly casts that he didn't mind at all, he

fell asleep during most of the castings. Then he

had the tenotomy under local anaesthetics, where he

cried while his foot was being held but he was

completely fine afterwards. Since the last cast came

off he's been wearing the brace (two shoes connected

by a bar) to prevent a relapse. He's now 3 1/2 years

old and is still wearing the brace at night. We never

had any problems with it and he calls them his 'good

night shoes'. I think he's going to wear them until

he's 4 years old.

Anyway, his clubfoot looks and works just like his

normal foot and he runs and jumps and you would never

guess that there has ever been anything wrong. He

also has a twin brother and both have developed at

exactly the same rate, ie they reached all their

milestones like sitting up, crawling, walking etc at

the same time, so the clubfoot and treatment has not

made any difference at all.

I hope this put your mind at rest a little,

with (3.5y)

and Alister (3.5y, right CF, Ponseti method, UK)

--- mandaneen wrote:

> Hi

>

> We have a six month old son who has moderate left

> foot talipes. We

> were about to undertake full release surgery when on

> seeking a second

> opinion we were recommended the Ponseti method of

> treatment. What a

> wonderful surprise to find out there is an

> alternative way.

>

> We are now starting the Ponseti method through a new

> Ortho and physio.

> I'd really like to hear from parents that have been

> through this method

> of treatment and what the results were like.

>

> Much appreciated

>

> manda

>

>

>

>

>

>

Send instant messages to your online friends http://uk.messenger.yahoo.com

[Guest guest]

Hi Manda,

You have made the best choice for your child. I will paste a copy of

our story below for you to read and know you made a great decision.

When we brought our daughter, , home from China at the age of

34 months she was walking, running, jumping,and climbing on her

clubfeet. (She literally walked on the tops of her feet with her feet

angled backwards as she walked.) It was amazing what she could do

with her precious little feet. Before we went to get her we knew she

had received no treatment for her clubfeet so I began researching

doctors before we ever brought her home. My quest was to find a

doctor who had experience treating older children who had actually

walked on their clubfeet for some years before treatment. As you all

know, that is a challenge in America because we treat our children

right after they are born.

My search led us to a doctor in Utah that had experience with older

children. He had successfully corrected an 8 year old boy from

Mexico who had walked on his clubfeet all those years through

surgery. We were very impressed with this and the fact that he had

corrected some older children through surgery as well. We asked

about the serial casting method and they said they found it wasn't

very successful for older children and did a combination of surgery

and then some casting. The nurse coordinator there was incredible

and gave me so much of his time before we ever brought our daughter

home. I knew we had finally found the right doc. This doctor is at

the Shriner's Hospital in Utah, which I knew nothing about until our

experience. My only knowledge of the Shriner's was that my

grandfather was a Shriner and now his great-granddaughter would be

treated at one of their hospitals that he believed in so much. My

grandfather had just passed away so as you can tell this was very

moving to me to have that connection.

Two weeks before we traveled overseas to bring our daughter home we

got a call saying they had an update for us and it wasn't good. My

heart sank and I asked what it was. Our social worker said she had a

brain scan done there that was abnormal. I asked what the diagnosis

was and they said that she had underdeveloped frontal lobes. Of

course I then inquired as to what that would mean and she couldn't

tell me as that is a very vague diagnosis. She said they weren't for

sure if she would be mentally retarded or not and wanted to know what

my husband and I wanted to do. I told her we were of course coming

to get her as she was our daughter no matter what her condition was.

More than anything I told our social worker I was more upset by the

fact that they even took her for this test when they knew we were

coming for her. All I could think was who took her to the medical

facility for the test, who was with her during the test, did they

sedate her and if so how did they do it, and all of that kind of

stuff. In many orphanages in her country, when children go for

medical care they are often taken by strangers as they are so

shorthanded and do not have the means to transport the children. My

heart just sank for our little girl. I called her nurse coordinator

at Shriner's and filled him in on the situation and he said he would

set it up for us to see one of their top neurologists at the same

time we came for her first appointment to see Dr. Santora for her

feet. I was so grateful!

We drove to Utah for our first appointment in January. At this point

our daughter was scared to death of any medical person. They told us

her case was very severe and she would need major surgery first (they

would have the O.R. for the day for her case) followed by 3 months of

casting with cast changes during that time. They said she would be

in the hospital for 3 weeks following the surgery. I was so

impressed by her doctor and how well he worked with our daughter. He

understood how scared she was and worked on building her trust level

as he checked her out. The other thing that really impressed us was

that he was not at all surprised or seemed stumped by the way her

feet were. It was like this was an ordinary case for him. I had

never stepped foot in a Shriner's Hospital before and I can't tell

you how impressed I was. It was incredible. They said they wanted

to wait 6 months to do the surgery to give her time to adjust to her

new environment, learning a new language, and being really well

bonded to us, plus her surgeon was booked out that far he was so

good. We asked if medically it was o.k. for her feet to wait that

long and they said yes as she could walk and all with no pain. We

also got to see her neurologist at her appointment in January and she

was very nice. (We did bring along the CT Scan from the orphanage

that the director so kindly gave to us when we went to visit before

coming home.) The neurologist said there was a possibility that she

may have a slight case of C.P. That shocked my husband and I, but we

were o.k. with that because as far as I was concerned she was doing

great. We were also so grateful that she didn't have this test done

earlier in her country before we chose her, as that orphanage does

not let children with that handicap be adopted. She truly is our

little miracle and dream come true! We feel so lucky to have her!!!

We went back in May for a foot pressure study in the GAIT lab which

was really neat. All the ladies were so nice and good with

in there. She did so well. It was neat to see the tape they did of

her to study her feet before the surgery. We also got to see her

neurologist again who felt more confident that was really

o.k. and did not feel as strongly about the possibility of her having

C.P. They told us they would call us with surgery dates for her in

two weeks (at our May visit they had decided to divide her surgery

into 2 sessions the second surgery 6 weeks after the first because

her case was so involved). Six weeks went by and we still didn't

have a date so I called and they said they wouldn't sit down to

schedule any more surgeries until August and her doctor was booked

out anyways till late fall/winter. I was so frustrated with this

delay as I felt that was too long for her to wait medically, plus I

was going through the special booties I had made for her like crazy

since she couldn't wear shoes and I knew it would be even harder in

the cold weather. At this point I told my husband maybe this is God's

way of telling us we really aren't in the right place. He said where

else are we going to go as we had already done the research a year

and a half ago before we brought her home? I said I didn't know but

I needed to do this for my own piece of mind even though we would

probably find out we were still in the right place.

In regard to the booties she wore, I had found a lady to make her

booties that looked as close to shoes as we could when we brought her

home. I had her make them in lots of different colors with bows,

flowers, or other pretties stitched on so she would feel good in

her " shoes " that she could put on and take off herself.) During that

time frame that she was wearing those booties, it was so funny

because I would have people follow me around when I was shopping just

to stop me and tell me I had her booties on crooked or backwards.

That totally cracked me up. People that were genuinely concerned and

polite about it I would briefly explain to them that she was born

with clubfeet and we were working with doctors out of state to

correct this. However, those that were rude about it I would simply

reply, " Actually they are on just right, " and go on my way. People

just crack me up.

Having no clue where to even start this time, I began searching for

other doctors in the country that could help . I ended up

contacting doctors who were using the casting method I had asked Utah

about that they said wouldn't work for her. I e-mailed about 20

doctors that had that qualification telling them briefly about

's situation and asking if they had experience with older

children with untreated clubfeet. I didn't tell them anything about

the other medical advice as I wanted their own opinion without the

influence of any other doctor's opinion. Only 3 e-mailed me back

that they had experience with older untreated children, so I kindly

thanked the others for their time and continued to talk to these 3

docs. They were in Missouri, New York, and Arizona. They were all

so nice and said they thought she would respond well with the casting

method although she would probably still need some surgery. (My

husband and I were so excited that we finally had an option to

minimize the amount of surgery that would need to be done.) I was so

impressed, especially with the docs in New York and Missouri. I knew

I wanted to switch doctors however I didn't know which one.

In the meantime, her nurse coordinator in Utah called back to tell us

they finally had her two surgery dates of October 10th and November

23rd scheduled. I told him I had done some more research in the

meantime and I was hearing from some doctors that they are getting

good results with older kids using the serial casting method. We

were wondering if our doctor would consider casting her before

surgery to gain more flexibility and hopefully minimize the amount of

surgery needed. When her nurse coordinator got back with me, he said

the doctor told him he didn't feel we'd gain anything at all from the

casting, but he'd do it if we absolutely insisted. He then told me

how they would do it and I immediately questioned him on some things

that didn't sound quite right for it to be done correctly. He didn't

seem to think the details of how they did it was all that important,

however, I did. I didn't cancel anything with them as I really

didn't have anything else lined up yet.

At this point I felt we would probably go to Missouri to see Dr.

Dobbs, but I still had a few more questions. It was a Friday and I

thought to myself this is crazy, here I'm making sure each doctor I

talk to is trained in the Ponseti method why not try to find the man

himself who developed this method, as I thought it was named after

him. I knew nothing about him and so I found his phone number and

called him. I thought this is a shot in the dark, but what does it

matter at this point. My husband is going to laugh so hard when I

tell him what I did. Dr. Ponseti's secretary answered the phone and

after just talking to her a few minutes she said he's right here in

his office I'm sure he'll take your call if he's not busy. Sure

enough we talked for about an hour and I was floored. I couldn't

believe it, as I truly didn't expect for anyone to answer the call.

I asked him if he'd do a consultation for us on her case and he said

sure. At this point I was thinking of going out to Missouri to see

Dr. Dobbs, who Ponseti agreed was excellent, and I wanted to make

sure we were on the right track rather than wasting another 6+ months

only to find out the treatment was wrong again. I then asked if he

wanted me to e-mail him some pictures of her feet before our

consultation and he said no that he would learn more by holding her

foot in her hand and manipulating it himself. At that point I knew

he was the doctor for us. I then asked him if he'd take her case on

and he said yes. I asked him when he could start working with her

and I was amazed when he said as soon as you can get here. He told

me he was so sorry we got such bad advice and he felt she needed to

be treated right away.

After talking to Dr. Ponseti, 's nurse coordinator from Utah

called to tell us that her doctor wanted another appointment with us

but it wasn't for it was for my husband and I. I thought

that was strange and asked why he wanted to see just us. Her nurse

coordinator said the doctor wanted to talk to us about the severity

of her case in person as he felt even after all the surgeries she

would go through she would still very likely be an AMPUTATION case.

I was so thankful we had found another doctor we had all the

confidence in the world in.

The rest is history. Four days after talking to Dr. Ponseti for the

first time, we hopped on a plane and flew to Iowa City where we

stayed at the Mc House. (One time we drove it to get

our car out there and it was 1531 miles one way). Dr. Ponseti did

say that our daughter's clubfeet were very severe and she was the

oldest, untreated child he had ever treated. Our daughter had 17

cast changes over the course of 3 months, and a 2.5 hour surgery at

the end which was a tenotomy and an ATTT (tendon transfer) on both

feet. She handled it all so well. She learned how to ride a

tricycle with her casts on at the RMH, crawled, walked with her casts

(before her surgery of course), went up and down the stairs on her

own, usually got herself dressed, still did great with the potty, and

loved wheeling around in her chair entertaining everyone. Nothing

stopped her as we tried not to treat her any different. My goal when

she got her casts on was to show her ALL the things she could do! She

still asks to go back to Iowa periodically. After being casted for 5

months, she got her casts off and relearned how to walk. Today her

left foot is perfect, however her right foot needs a little bit more

work due to a ridge that formed in that foot from all the walking we

were told would not hurt her by her Utah doctor prior to starting

treatment with Ponseti. She will need another surgery due to this,

and we will return to Ponseti to do it with her surgeon Dr. Morcuende

there. She now walks, jumps, runs, and wears sandals and light up

shoes that I can buy in the store. It is amazing the transformation

of her feet. I'm just so thankful we researched further even when I

didn't know where to turn.

Dr. Ponseti truly is a miracle worker for us. We can never thank him

enough for all he has done for her. I cringe everytime I think of

what could have happened if we had stayed with the original doctor in

Utah.

participated in the 2nd Annual Ponseti Clubfoot Races in

October when we were in Iowa in her wheelchair and at that race there

was a man running with the kids named Mark Henkel that came up and

asked if he could have his picture taken with my daughter. I asked

him if he was with the university and he said, " No, I'm a former

patient of Dr. Ponseti's and I was treated by him in 1956. " I

couldn't believe it. I then asked him how his feet are today and he

said great, pain free! If you ask me, that's a great testimonial.

Of course, I was priveledged to have 's picture with him.

I did also want to add that we have nothing against Shriner's

Hospital. They are absolutely excellent, it was just that the doctor

we were working with was not the right doctor to help 's

particular medical condition. We have talked and met Dr. Dobbs and I

would be very confident in taking to him as well. He

practices one day a week at Shriner's in St. Louis. Shriner's

Hospitals are incredible and creating miracles all the time for

children.

Please feel free to contact me if you have any questions. Thanks!

Joyce

Proud Mommy to , 01-03-02, bcf

>

> Hi

>

> We have a six month old son who has moderate left foot talipes. We

> were about to undertake full release surgery when on seeking a

second

> opinion we were recommended the Ponseti method of treatment. What

a

> wonderful surprise to find out there is an alternative way.

>

> We are now starting the Ponseti method through a new Ortho and

physio.

> I'd really like to hear from parents that have been through this

method

> of treatment and what the results were like.

>

> Much appreciated

>

> manda

>

[Guest guest]

Hi Manda,

My daughter was born with a right club foot. They told us she had a

mild case of the most serious form of club foot. We live in Alaska

and the Dr here said she would have to have surgery and referred us

to Children's hospital in Seattle. Dr. Mosca there does the Ponseti

method and we have been very pleased. Rose is now just over three

years old. Her foot looks great and she is doing fine. The brace is

a pain but when you think of the alternative it is nothing. The time

goes so fast that before you know it you are done! Plus, I don't

know about you but I was almost glad for the brace because Rose

couldn't climb out of her crib!

Robin & Rose

3/12/03

Right club foot

> >

> > Hi

> >

> > We have a six month old son who has moderate left foot talipes.

> We

> > were about to undertake full release surgery when on seeking a

> second

> > opinion we were recommended the Ponseti method of treatment.

What

> a

> > wonderful surprise to find out there is an alternative way.

> >

> > We are now starting the Ponseti method through a new Ortho and

> physio.

> > I'd really like to hear from parents that have been through this

> method

> > of treatment and what the results were like.

> >

> > Much appreciated

> >

> > manda

> >

>

[Guest guest]

I'm late in responding here, but want to say it is very fortunate you found

Ponseti! Six months is certainly not too old to expect excellent results

provided your doctor is true to the Ponseti Method and experienced in the

method.

Just briefly I have three sons all with bilateral club feet. The oldest did not

recieve Ponseti care until he was nearly two years old; the younger two were

treated by Dr. Ponseti himself. The difference in their feet is amazing! The

two little ones have perfect feet!

Good luck to you!

shawnee

Just started Ponseti method and need reassurance

Hi

We have a six month old son who has moderate left foot talipes. We

were about to undertake full release surgery when on seeking a second

opinion we were recommended the Ponseti method of treatment. What a

wonderful surprise to find out there is an alternative way.

We are now starting the Ponseti method through a new Ortho and physio.

I'd really like to hear from parents that have been through this method

of treatment and what the results were like.

Much appreciated

manda