Re: My 9 week old with clubfeet

[Guest guest]

Surgery is a last resort-and you certainly have come to the right

location!!Is the surgery your physician is talking about the

tenetomy or a more major procedure? I am so glad you are seeking

help. Most feet are corrected after 6 weeks-so the fact that your

child's feet are still stiff, etc.-may mean your physician is not

doing the process correctly. Hopefully you can tell us where you are

and we can see if we can get you a second opinion from a qualified

Ponseti physician.

Below is a link-check it out, it explains and answers a lot of

question for parents. It also has a list of qualified physicians in

the method-this means that they have submitted case studies to

Ponseti showing their success, etc.

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/cl

ubfeet/index.html

If the link doesn't hyperlink-copy and paste it into your web

browser. We are certainly here to help.

Take care,

kathleen

mom to david bcf fab 12/7

>

> Hi, Just looking for some advice. I have a 9 week old infant that

was

> born with bilaterial clubfeet. He has undergone casting since he

was 3

> weeks old. Eventhough his feet are improving, they are still quite

> tight. After leaving them out of the cast for 10 minutes, you can

feel

> the pull of the muscles. I really don't want to do surgery unless

it

> is undoubtly necessary. Has anyone experienced this with thier

child.

> I need some input please. The surgeon wants to do surgery on him

in

> less then a week and I not sure this is route I want to go.

>

> Help

>

[Guest guest]

You came to the right place! You are going to get some priceless advice

from the experienced parents on this board.

What kind of surgery do they want to do? Are they talking about a tenotomy

or something much more invasive?

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of shyrod868

Sent: Thursday, March 02, 2006 12:45 AM

To: nosurgery4clubfoot

Subject: My 9 week old with clubfeet

Hi, Just looking for some advice. I have a 9 week old infant that was

born with bilaterial clubfeet. He has undergone casting since he was 3

weeks old. Eventhough his feet are improving, they are still quite

tight. After leaving them out of the cast for 10 minutes, you can feel

the pull of the muscles. I really don't want to do surgery unless it

is undoubtly necessary. Has anyone experienced this with thier child.

I need some input please. The surgeon wants to do surgery on him in

less then a week and I not sure this is route I want to go.

Help

[Guest guest]

Hi,

Yes we experienced exactly that. had 9 casts, same story, stiff,

not responding enough, etc. He was scheduled for surgery at 12 weeks. We

flew to Iowa with him at 10 weeks and within 16 days (3 casts by Dr Ponseti)

done the RIGHT way, his feet were completely corrected - before his

scheduled surgery date! I can't urge you enough to get a 2nd opinion from a

good Ponseti doctor and you'll be amazed how fast the casts work. I saw a

difference with the 1st cast that Dr Ponseti removed that was more than the

total of 9 casts that had had before! Tell us where you're situated

and somebody will recommend who you can see. We had the problem of no

Ponseti doctors in our country which is why we made the decision to fly

10,000 miles to see Dr Ponseti himself, but there are many more fine doctors

out there using his technique with great success.

Good luck

and

www.clubfoot.co.za <http://www.clubfoot.co.za/>

www.steps.org.za <http://www.steps.org.za/>

Moss

CEO Steps Charity

<http://www.steps.org.za> www.steps.org.za

Cell:

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of shyrod868

Sent: 02 March 2006 07:45 AM

To: nosurgery4clubfoot

Subject: My 9 week old with clubfeet

Hi, Just looking for some advice. I have a 9 week old infant that was

born with bilaterial clubfeet. He has undergone casting since he was 3

weeks old. Eventhough his feet are improving, they are still quite

tight. After leaving them out of the cast for 10 minutes, you can feel

the pull of the muscles. I really don't want to do surgery unless it

is undoubtly necessary. Has anyone experienced this with thier child.

I need some input please. The surgeon wants to do surgery on him in

less then a week and I not sure this is route I want to go.

Help

[Guest guest]

Kathleen has given you great info. I just wanted to second what she said. At

9-weeks there is no reason to do any surgery other than the standard tenotomy.

However, this should only be done when the foot is corrected except for

tightness. didn;t have this, so if I didn't explain it right, I am sure

someone will correct me. Sorry I can't type much right now. I have a 15 month

old hanging out on my lap! Good luck with everything!

11/19/04 bilateral clubfeet

leenernd wrote:

Surgery is a last resort-and you certainly have come to the right

location!!Is the surgery your physician is talking about the

tenetomy or a more major procedure? I am so glad you are seeking

help. Most feet are corrected after 6 weeks-so the fact that your

child's feet are still stiff, etc.-may mean your physician is not

doing the process correctly. Hopefully you can tell us where you are

and we can see if we can get you a second opinion from a qualified

Ponseti physician.

Below is a link-check it out, it explains and answers a lot of

question for parents. It also has a list of qualified physicians in

the method-this means that they have submitted case studies to

Ponseti showing their success, etc.

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/cl

ubfeet/index.html

If the link doesn't hyperlink-copy and paste it into your web

browser. We are certainly here to help.

Take care,

kathleen

mom to david bcf fab 12/7

>

> Hi, Just looking for some advice. I have a 9 week old infant that

was

> born with bilaterial clubfeet. He has undergone casting since he

was 3

> weeks old. Eventhough his feet are improving, they are still quite

> tight. After leaving them out of the cast for 10 minutes, you can

feel

> the pull of the muscles. I really don't want to do surgery unless

it

> is undoubtly necessary. Has anyone experienced this with thier

child.

> I need some input please. The surgeon wants to do surgery on him

in

> less then a week and I not sure this is route I want to go.

>

> Help

>

[Guest guest]

,

That's true. If the 'surgery' is the Percutaneous tenotomy (the snipping of

the Achilles tendon and so non-invasive that Dr Ponseti does it with a local

anaesthetic cream) then it's only done when the rest of the foot is entirely

corrected and just the heel is still pulled up because of the thicker

Achilles tendon that takes much longer to stretch than all the other

tendons. This is how Dr Ponseti explained it to us when he advised had

to have his tenotomy. It took all of 10 minutes for both feet, and was

awake during the procedure.

Moss

CEO Steps Charity

<http://www.steps.org.za> www.steps.org.za

Cell:

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of JGOODIN

Sent: 02 March 2006 05:05 PM

To: nosurgery4clubfoot

Subject: Re: Re: My 9 week old with clubfeet

Kathleen has given you great info. I just wanted to second what she said.

At 9-weeks there is no reason to do any surgery other than the standard

tenotomy. However, this should only be done when the foot is corrected

except for tightness. didn;t have this, so if I didn't explain it

right, I am sure someone will correct me. Sorry I can't type much right

now. I have a 15 month old hanging out on my lap! Good luck with

everything!

11/19/04 bilateral clubfeet

leenernd wrote:

Surgery is a last resort-and you certainly have come to the right

location!!Is the surgery your physician is talking about the

tenetomy or a more major procedure? I am so glad you are seeking

help. Most feet are corrected after 6 weeks-so the fact that your

child's feet are still stiff, etc.-may mean your physician is not

doing the process correctly. Hopefully you can tell us where you are

and we can see if we can get you a second opinion from a qualified

Ponseti physician.

Below is a link-check it out, it explains and answers a lot of

question for parents. It also has a list of qualified physicians in

the method-this means that they have submitted case studies to

Ponseti showing their success, etc.

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/cl

ubfeet/index.html

If the link doesn't hyperlink-copy and paste it into your web

browser. We are certainly here to help.

Take care,

kathleen

mom to david bcf fab 12/7

>

> Hi, Just looking for some advice. I have a 9 week old infant that

was

> born with bilaterial clubfeet. He has undergone casting since he

was 3

> weeks old. Eventhough his feet are improving, they are still quite

> tight. After leaving them out of the cast for 10 minutes, you can

feel

> the pull of the muscles. I really don't want to do surgery unless

it

> is undoubtly necessary. Has anyone experienced this with thier

child.

> I need some input please. The surgeon wants to do surgery on him

in

> less then a week and I not sure this is route I want to go.

>

> Help

>

[Guest guest]

My little guy had very stiff tendons, too and was initially given Botox twice

to deal with. After I switched doctors (to a proper Ponseti doctor) and he had

the tenotomy and was subsequently placed in the boots and bar - his tendon is

much better. Also, my baby was much older than yours by the time he had the

tenotomy done, so rest assured it will make a difference! Good luck!

shyrod868 wrote: Hi, Just looking for some

advice. I have a 9 week old infant that was

born with bilaterial clubfeet. He has undergone casting since he was 3

weeks old. Eventhough his feet are improving, they are still quite

tight. After leaving them out of the cast for 10 minutes, you can feel

the pull of the muscles. I really don't want to do surgery unless it

is undoubtly necessary. Has anyone experienced this with thier child.

I need some input please. The surgeon wants to do surgery on him in

less then a week and I not sure this is route I want to go.

Help

[Guest guest]

Hi, and welcome!

We're glad you are here!

Yes, you'll hear that many of us experienced the same thing. My

daughter had 9 casts in her initial treatment with her first doctor ..

her foot looked better, but not right (still 'lumpy' and tight), and as

time went by, I became more and more concerned that something was not

right. Once we switched doctors, the change was dramatic; immediate

improvement.

Even if the surgery your baby's doctor is talking about is 'just' a

tenotomy, it should not be done too early. It should be the last step

in correction, once all other dimensions of the foot have been

completely corrected.

So, from one mom to another: Follow your gut instinct! If something is

telling you your child is not in the best situation, don't be afraid to

question the doctor, challenge him, and ultimately take your child

elsewhere! The treatment he receives now will affect him his whole

life, and you are his advocate! There are many doctors who might be

wonderfully skilled as surgeons and highly regarded, but not

necessarily the best technique at treating clubfoot.

You are right that you can almost see the foot 'going back' to the

clubbed position after just a short time out of the casts. (It's

important that the doc doesn't allow the foot to be cast free for more

than a few minutes.) Progress between castings should be clear.. with

the foot looking better each time. With the Ponseti method, this should

take no more than about 5 to 7 casts.

Here are some key websites for information; please check them out:

http://www.global-help.org/publications/cf-english.pdf

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubf

eet/index.html

http://members.tripod.com/ponseti_links-ivil/

Here are checklists of things to warning signs to watch for as a parent:

http://members.tripod.com/ponseti_links-ivil/id13.html

http://www.clubfoot.co.za/checklist.htm

Here's a family webstie with pictures toa compare progress during

treatment:

http://hometown.aol.com/vc11/

You will get much good info and help here! Please do let us know where

you are and how we can help!

Best,

and Claire, age 5,

corrected with Ponseti method, doing great!

[Guest guest]

Please do not agree to have surgery done without checking into seeing a Ponseti

qualified doctor for a second opinion. A nine week old baby does not need

surgery and there is no harm in not doing it but great potential harm in going

through with it. Once surgery is done, the foot is irreparably damaged and

changed and non surgical treatments will most likely not work as well if at all.

I hear the fear in your email and know that you must feel in your gut that the

treatment your baby is getting may not be the correct treatment. Please post

where you are located so we can help you find a doctor in your area who will do

non surgical correction of your baby's feet. There is such great knowledge and

support in this group and someone can help you find a good doctor who will treat

your baby as he should be treated and end up with wonderful feet. Don't give up

and keep looking for answers. All the best to you,

Carol and , bcf, 10-27-05

My 9 week old with clubfeet

Hi, Just looking for some advice. I have a 9 week old infant that was

born with bilaterial clubfeet. He has undergone casting since he was 3

weeks old. Eventhough his feet are improving, they are still quite

tight. After leaving them out of the cast for 10 minutes, you can feel

the pull of the muscles. I really don't want to do surgery unless it

is undoubtly necessary. Has anyone experienced this with thier child.

I need some input please. The surgeon wants to do surgery on him in

less then a week and I not sure this is route I want to go.

Help

[Guest guest]

Hi and welcome to the group! Just wanted to second what everyone else

has already told you. The tenotomy is a tiny procedure that is most

often done in the doctor's office instead of an OR (although it can be

done there for various reasons). This little snip of the achilles

tendon is very minor and non-invasive, no stitches, and the scar is

about the size of a pencil point. This surgery is the final step in

correcting a clubfoot, if it is done too soon in the process it can

impede the progress of the rest of the correction, cause other problems

and may have to be repeated. If the doctor wants to do any other

surgery at this point I would definitely not allow it. First of all

because major surgery is rarely needed to correct clubfoot, less than

1% of clubfeet now require a major release type surgery to correct.

Secondly because 10 weeks is WAY too early for any major surgery even

on the off chance that he would truly need it down the road.

If you can let us know a bit more about your situation we will be glad

to help!

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

> Hi, Just looking for some advice. I have a 9 week old infant that

was

> born with bilaterial clubfeet. He has undergone casting since he was

3

> weeks old. Eventhough his feet are improving, they are still quite

> tight. After leaving them out of the cast for 10 minutes, you can

feel

> the pull of the muscles. I really don't want to do surgery unless it

> is undoubtly necessary. Has anyone experienced this with thier

child.

> I need some input please. The surgeon wants to do surgery on him in

> less then a week and I not sure this is route I want to go.

>

> Help

>

[Guest guest]

Holy Cow Batman, run away from that doctor as fast as you can!!!! There is

NOOOOOOOOOO need to even THINK surgery at this little bitty baby age!!!!! The

doc, God bless him, obviously doesn't know how to treat this deformity! PLEASE

LET US HELP YOU FIND ONE WHO CAN AND WILL FIX YOUR CHILD WITH OUT SURGERY!!!!

s.

I really don't want to do surgery unless it

is undoubtly necessary. Has anyone experienced this with thier child.

I need some input please. The surgeon wants to do surgery on him in

less then a week and I not sure this is route I want to go.

Help