what if ponsetti does not work?

[Guest guest]

Our son has had thirteen weeks of ponsetti casts but his foot keeps

slipping out of them. The consultant at Birmingham still thought his

foot had been manipulated enough through the treatment for a tenotomy.

This was completed last wednesday but since then he has had 2 casts,

both which have slipped. He is back in tomorrow for another cast and

possibly a spiker cast which immobilises his leg up to the waist and

above. If this does not work then it is invasive surgery at nine

months and all of the ponsetti treatment will be for nothing.

Are there alternatives to casts, i.e. splints that can be used?

Has anyone else had similar experiences?

[Guest guest]

Ponseti DOES work, when it's done right. Your son is young enough (I assume?

he's still an infant?) to start treatment over with a qualified doctor. Get

that surgery word out of your vocabulary right now!!!! Thirteen casts are too

many. Slipping in the Ponseti method casts is really unusual. OH it does

happen on occasion, but it's unusual. I would definatly seek a differetn

doctor, and dr. Ponseti if possible or shriners in St. Louis (?)....you have

time to fix this with out surgery and we totally implore you to explore that

option while you can!

s.

what if ponsetti does not work?

Our son has had thirteen weeks of ponsetti casts but his foot keeps

slipping out of them. The consultant at Birmingham still thought his

foot had been manipulated enough through the treatment for a tenotomy.

This was completed last wednesday but since then he has had 2 casts,

both which have slipped. He is back in tomorrow for another cast and

possibly a spiker cast which immobilises his leg up to the waist and

above. If this does not work then it is invasive surgery at nine

months and all of the ponsetti treatment will be for nothing.

Are there alternatives to casts, i.e. splints that can be used?

Has anyone else had similar experiences?

[Guest guest]

Hi, and welcome to our group!

I'm assuming from your post that you are in the UK. Please correct me

if I'm wrong. From what you've posted, my assumption is that your

consultant is not correctly using the Ponseti method. A doctor using

the method correctly will only need on average 5-7 casts (changed

weekly) to correct the foot, up to 9 for the most severe. This is for

standard congenital clubfoot. The fact that the casts are slipping

leads me to believe that either the doctor isn't applying them

correctly, or your son has a-typical clubfoot, which is just a broad

term to describe a foot that has some other physical aspect to it

which makes it different from most clubfeet. There's a website about

one mom's experience with a-typical feet here:

http://adifferentfoot.freeservers.com/

If you join the yahoo group CFPics, you can share pictures of your

son's foot with us, and also see pictures of other kids' feet as well.

Is there any way you can get to Naomi or Gavin de Kiewiet?

Here is their information from Dr. P's website

(http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physiciansab

road.html):

Dr. Naomi

Booth Hall Children's Hospital

Manchester, U.K.

Fax or phone UK 0

Gavin P. de Kiewiet

Sunderland Royal Hospital

Kayll Road

Sunderland SR4 7TP

England

Fax: 44.

There are others in the UK also, please take a look at the list to see

if there are any near you- but the two I mentioned above are the most

experienced in using the method and are in contact with Dr. P

regularly. Please seek out a second opinion as soon as possible from

a doctor who is listed on Dr. Ponseti's website.

They should at least be able to help you diagnose whether your son has

an unusual case or if he's just been the victim of poor treatment up

until now.

Please keep us posted and share more information as you are able.

Please be assured that if you can find a competent doctor, your son

will not need any major surgery. Many of us were told the very same

thing, but then switched to a doctor who was using the Ponseti method

correctly, and then our children's feet were corrected (and usually in

short order). Here is a website that might help you:

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

Here's my daughter's website: http://ponseticlubfoot.freeservers.com/

I'm glad you found us- hopefully we can help your son! By the way,

what is his name?!

Regards,

& (16-Mar-00, left cf, switched to Ponseti method at 4

months old!)

> Our son has had thirteen weeks of ponsetti casts but his foot keeps

> slipping out of them. The consultant at Birmingham still thought his

> foot had been manipulated enough through the treatment for a

tenotomy.

> This was completed last wednesday but since then he has had 2 casts,

> both which have slipped. He is back in tomorrow for another cast and

> possibly a spiker cast which immobilises his leg up to the waist and

> above. If this does not work then it is invasive surgery at nine

> months and all of the ponsetti treatment will be for nothing.

>

> Are there alternatives to casts, i.e. splints that can be used?

>

> Has anyone else had similar experiences?

[Guest guest]

In general, 13 weeks of casting is excessively long for the Ponseti

method, most feet are corrected in 5-7 weeks, with 9 being on the high

side. Often slipping casts is a sign that the casts are being

incorrectly applied. Would you mind telling us who your doctor is?

Is he Ponseti certified? Often doctors say they are using the Ponseti

method when in fact they are not, and they have less than satisfactory

results. If you can give us a bit more information we can possibly

help you determine if and from whom you should be seeking a second

opinion. Personally, I would at this point be ready to seek a second

opinion if your doctor is starting to talk about surgery. A true

Ponseti doctor would most certainly confer with or even refer you to

one of their collegues or Dr. Ponseti himself if they were having

difficulties with your son's case before they would even think about

surgery. After the tenotomy was your son's foot fully corrected? Was

this last cast rotated outward to 70 degrees? Just a few questions to

get us started in helping you.

Thanks,

Jenna (4/7/01) & (9/25/04, RCF, Dobbs Brace, 16-18 hrs/day)

> Our son has had thirteen weeks of ponsetti casts but his foot keeps

> slipping out of them. The consultant at Birmingham still thought his

> foot had been manipulated enough through the treatment for a tenotomy.

> This was completed last wednesday but since then he has had 2 casts,

> both which have slipped. He is back in tomorrow for another cast and

> possibly a spiker cast which immobilises his leg up to the waist and

> above. If this does not work then it is invasive surgery at nine

> months and all of the ponsetti treatment will be for nothing.

>

> Are there alternatives to casts, i.e. splints that can be used?

>

> Has anyone else had similar experiences?

[Guest guest]

HI,

We too had a similiar situation with our son Diego being in casts too long

and our Dr. claimed that he was using Ponseti but was not trained. We make the

best decision in the world by taking our son to see Dr.Ponseti. He was seen

8/26 and I removed the cast yesterday (per Ponseti approval) and Diego has new

feet! Dr. Ponseti is a miracle from GOD and he fixes feet with his beautiful

hands. We will not be able to afford (unfortunately) to continue seeing him but

he has referred us to a Ponseti trained physician in Tucson,Az Dr. Kent which

we will begin seeing on Monday.

Please look around for a Ponseti trained Dr. and don't be afraid to challenge

Dr.'s you have to get the best care for your son!

God Bless,

mom to Diego 3/24/05 bc

[Guest guest]

Just in case. Here is the list of qualified doctors by state & country.

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

> Ponseti DOES work, when it's done right. Your son is young enough

(I assume? he's still an infant?) to start treatment over with a

qualified doctor. Get that surgery word out of your vocabulary right

now!!!! Thirteen casts are too many. Slipping in the Ponseti

method casts is really unusual. OH it does happen on occasion, but

it's unusual. I would definatly seek a differetn doctor, and dr.

Ponseti if possible or shriners in St. Louis (?)....you have time to

fix this with out surgery and we totally implore you to explore that

option while you can!

> s.

>

> what if ponsetti does not work?

>

>

> Our son has had thirteen weeks of ponsetti casts but his foot keeps

> slipping out of them. The consultant at Birmingham still thought his

> foot had been manipulated enough through the treatment for a tenotomy.

> This was completed last wednesday but since then he has had 2 casts,

> both which have slipped. He is back in tomorrow for another cast and

> possibly a spiker cast which immobilises his leg up to the waist and

> above. If this does not work then it is invasive surgery at nine

> months and all of the ponsetti treatment will be for nothing.

>

> Are there alternatives to casts, i.e. splints that can be used?

>

> Has anyone else had similar experiences?

>

>

>

>

>

>

>

>

>

[Guest guest]

There are two reasons this could be happening, and I haven't read all the

messages, so I may be repeating what others have said. First, it should not

take 13 weeks of casting, and since it obviously isn't working have you thought

of getting a second opinion with a certified Ponseti doctor if you are not

seeing one. They may not be positioning the foot correctly, which would cause

it to not correct and slip.

Another possibility is that your little one has atypical clubfoot. This is

harder, but not impossible to treat, and some doctors are very inexperienced in

it, or may not even know it exists. Children with atypical will slip out of

casts or the FAB much easier, thus the sandals for those children. In

any case, that this point, your son has been through enough, and I would

recommend a second opinion because casting that would make his foot immobile for

awhile.

11/19/04 bilateral clubfeet

what if ponsetti does not work?

Our son has had thirteen weeks of ponsetti casts but his foot keeps

slipping out of them. The consultant at Birmingham still thought his

foot had been manipulated enough through the treatment for a tenotomy.

This was completed last wednesday but since then he has had 2 casts,

both which have slipped. He is back in tomorrow for another cast and

possibly a spiker cast which immobilises his leg up to the waist and

above. If this does not work then it is invasive surgery at nine

months and all of the ponsetti treatment will be for nothing.

Are there alternatives to casts, i.e. splints that can be used?

Has anyone else had similar experiences?

[Guest guest]

Hi .

Please let me know how your appointment goes with Dr. Kent

in Tucson. I will be seeing him too once my son is born. Best of

luck. I'm glad you were able to see Dr. Ponseti and that he was able

to work his miracle with your son.

> HI,

>

> We too had a similiar situation with our son Diego being in casts

too long

> and our Dr. claimed that he was using Ponseti but was not trained.

We make the

> best decision in the world by taking our son to see Dr.Ponseti. He

was seen

> 8/26 and I removed the cast yesterday (per Ponseti approval) and

Diego has new

> feet! Dr. Ponseti is a miracle from GOD and he fixes feet with his

beautiful

> hands. We will not be able to afford (unfortunately) to continue

seeing him but

> he has referred us to a Ponseti trained physician in Tucson,Az Dr.

Kent which

> we will begin seeing on Monday.

>

> Please look around for a Ponseti trained Dr. and don't be afraid

to challenge

> Dr.'s you have to get the best care for your son!

>

> God Bless,

>

> mom to Diego 3/24/05 bc

>

>

>

[Guest guest]

Hi,

We also have a very similar story, however the doctor we saw was not

using the Ponseti method (at the time we didn't know that there

were different types of treatment). My son was casted numerous

times after birth and then had a tenatomy. After the tenatomy he

slipped out of numerous casts. The casts were up over his knee and

he continued to kick out of them. So then we tried AFO's, DAFOs,

etc.---he slipped out of all of these. Finally the doctor said that

we'd have to do a major release that would possibly involve putting

pins in his leggs. This is when I found this wonderful group. We

cancelled the surgery and started to see Dr. Dobbs in St. Louis who

is Ponseti trained. never slipped out of any casts that were

put on him. I think it's because the casts were plaster and not

fiberglass that helped. I also think that by stretching the foot

out instead of putting it in a neutral position it helped keep the

cast on. Anyhow, the treatment has been a true blessing. We

started the treatment last November and my sons feet look great.

Good Luck!

Proud Mom to

undiagnosed syndrome: microcephaly, bilateral ptosis, bilateral

clubfeet, undescended testes, GERD, low muscle tone, left kidney-

hydronephrosis due to Grade IV reflux, right kidney-cysts on upper

20% and low functioning, heart murmur, global developmental delays

and a big snuggle-bug that is determined to do things.

> > HI,

> >

> > We too had a similiar situation with our son Diego being in

casts

> too long

> > and our Dr. claimed that he was using Ponseti but was not

trained.

> We make the

> > best decision in the world by taking our son to see Dr.Ponseti.

He

> was seen

> > 8/26 and I removed the cast yesterday (per Ponseti approval) and

> Diego has new

> > feet! Dr. Ponseti is a miracle from GOD and he fixes feet with

his

> beautiful

> > hands. We will not be able to afford (unfortunately) to continue

> seeing him but

> > he has referred us to a Ponseti trained physician in Tucson,Az

Dr.

> Kent which

> > we will begin seeing on Monday.

> >

> > Please look around for a Ponseti trained Dr. and don't be afraid

> to challenge

> > Dr.'s you have to get the best care for your son!

> >

> > God Bless,

> >

> > mom to Diego 3/24/05 bc

> >

> >

> >

[Guest guest]

HI don't know if this is of any extra help but got the idea you were in the UK

and thought might be able to add some more info about what to do.

Our story was very similar to yours and when I joined this site so many people

helped me to see the way forward. We live in Brighton and our son also went

through 13 casts and a tenotomy (Luckily for us his casts didn't slip) before I

finally wised up that something wasn't going correctly and got onto the

internet.

We emailed Naomi at Manchester's Booth Hall Chidren's Hospital and after

speaking to her we got our consultant to refer us up to her. We've now been

seeing her for 7 weeks and our son's feet have completely changed. They finally

began to turn outwards and on Monday we had another tenotomy. Naomi was really

happy with his position and says his feet are going to be absolutley fine.

Something that I worried a lot about before.

Naomi is fantastic and really friendly. She was quite happy to answer my emails

and chat to me on the phone and she is so down to earth that I'm sure she'd out

you at ease straight away. (Sorry I have become a bit of a fan after seeing what

she's done for our son!)

Although Naomi doesn't really believe in the term atypical as she just says it

means feet that are hard to correct she did state that our sons feet would have

been classed as atypical by others so even tricky feet can be sorted.

Naomi and Gavin Kieweit (at sunderland) both have really good reputations for

treating difficult feet and are fully Ponseti certified so I would definately

start to look into going to see one of them.

Financially try not to worry as Naomi definately has a fund to help parents and

when I wrote to Virgin Trains they were kind enough to give me a free rail pass

to make the journey each week.

If I can be of any further help please get in touch as joining this site and

putting up your message will soon become the best thing you ever did for your

son.

There really are fantastic doctors in the UK that will use the Ponseti method

correctly and givve your son the lovely feet he deserves!

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