Re: Rolfing and hinged bar.........

[Guest guest]

Yolande,

Have you looked into the possibility that Toby's feet could be atypical? I

can't imagine why his feet keep slipping in the boots, unless they aren't

fully corrected or atypical. 5 months of casts is brutal!!! The poor

thing. I recommend taking pictures of his feet and sending them to Dr.

Ponseti. Maybe he can give more insight on why his feet aren't staying in

the Markells.

I have never heard of rolfing. It sounds very interesting. Does Toby

enjoy the treatments?

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Hi Yolande,

We live in South Africa, it sounds like you've had a pretty tough time.

I once had an email from Michiel Steenbeek who was based in Uganda but

then moved to Kenya. Have you ever had contact with him? He is a

physiotherapist from the Netherlands who was involved in the Uganda

Project and he designed the locally manufactured FAB which is

lightweight and cheap. In case you need it, here's the email address he

gave me:

steenbeek@...

Maybe he's moved on since then, but it sounded like he's going to be

there quite a while. If he doesn't get back to you there are good guys

doing Ponseti in both Malawi and Uganda, maybe you could contact them:

Lavy in Malawi (ex-pat I think from the UK)

lavy@...

Mainetti in Uganda (he took over from Steenbeek)

mainetti@...

The bar was a new one designed by Dr Dobbs, but we have always used the

Markell bar and crawled very fast in it - he also stood and walked

in it if he was holding onto something!

The rolfing technique sounds fascinating, I have heard of it, but know

very little about it.

Finally, if there's anything I can send you from South Africa (it might

be cheaper than from the US), e.g. bigger shoes, etc, please let me

know!

and

24 Jan 2003, bilateral cf

www.clubfoot.co.za

Moss

Steps Charity

www.steps.org.za

Cell:

Rolfing and hinged bar.........

Hi

Before I get to my question and something interesting I want to share, I

just thought I would give some background - more as catharsis for myself

then because you need to know it!

I am a British ex-pat living in Kenya as my husband works for a US NGO

out here. Our third child Toby was born out here with severe bi-lateral

club feet 6 months ago. After some initial poor management by someone

who did not know what he was doing (ending up with Toby having a huge

pressure sore on his ankle and gangrene in one leg at 4 weeks) not to

mention a host of other issues we eventually found a mission hospital

(quite a journey away as it is at the bottom of the rift valley) called

CURE which is US based mission group which have set up orthopaedic

hospitals in about 5 developing countries to treat a number of

conditions including club foot. They follow ponsetti and we were doing

great. The only problem is that Toby is huge and so could only stay in

casts up to a week before circulation problems started which was

problematic given the journey (I gave up my job!). He had a tenotomy

but we could not get the boots and bar to stay on, so we went back into

casts - in all he was in casts for 5 months. The second attempt at the

FAB failed (even following all the advice I got from this list, and

having some socks with the sticky pads couriered to me at great

expense!). So the hospital made their own AFOs for him (in black plastic

as he is the only white baby they see! - I'm often in the waiting room

sat amongst a host of Masai women with their kids strapped with cloth on

their back all smiling to themselves as I lug baby, car-seat, changing

bag etc into the treatment room!). The AFOs were only keeping his feet

in neutral and they were getting stiff. I then read about the problems

with AFOs and we even managed to get in a call to one of the doctors in

Ponsetti's clinic in Iowa who said get him back into casts and repeat

the tenotomy in order to get the dorsiflexion we needed for the boots.

This was about two weeks ago and I was really down as we have had such

problems with the casts - he gets terrible heat rash and does not sleep.

Anyway on a kind of whim I took him to see a lady who practices

'rolfing' out here - it is a kind of deep massage where they break down

connective tissue. By the end of the first session we had at least 10

degrees of dorsiflexion and got the boots on (that was a week ago) and

then I took him again this week and she did some work on the fatty

tissue on the top of his feet and has visibly lengthened them so that

the boots fit even better. I wanted to know whether anyone else has

tried rolfing? it has worked well for me and he does not need to go back

into casts. I am going to do a few more sessions as she reckons she can

help the supination of his feet.

The other thing I wanted to ask was....someone and I can't find it now

mentioned that there is a hinged bar you can get to help when the baby

is crawling. Toby is not crawling yet, but as it takes me so long to

get things sent out to Kenya I thought I should start researching this

now. Can anyone help with where I might get this and let me know if it

is of use? Also I have the Markell shoes (as they were prepared to send

them to us in Kenya) - will it work with them?

Thanks

Yolande

[Guest guest]

Yolande,

I found the message that referred to the hinged Dobbs brace. The

Markell shoes can be bolted onto it and you can order the bar only from

Dr Dobbs if you like at a cost of $246. I don't have his email address,

but I'm sure someone posted it here recently, or else he'll be on Dr

Ponseti's list of approved doctors.

Since Toby had the Rolfing, do the shoes stay on better? Maybe they

were never fully corrected or he has atypical feet, which would mean you

might be better off with the Ponseti FAB, which is apparently

very comfortable for the baby and keeps stubborn feet in properly

without sores. 's website will have more info,

www.mdorthopaedics.org

His phone number is: (319)653-7435

HTH, good luck!

and

www.clubfoot.co.za

[Guest guest]

Yolande,

Welcome to our group. We hope that you are able to get a FAB/DBB

that will work with your child.

We are glad that you have been able to find Ponseti method doctors

in Kenya. Much of the pioneering work of introducing the Ponseti

method to Africa was started by Dr. Shafique Pirani of Vancouver,

B.C. 6 years ago when he help start the Uganda Clubfoot project.

Within a year or two they began introducing the Ponseti method to

doctors in Kenya, Zimbabwe, Tanzania and Malawi. Here are three

articles about the Uganda Clubfoot project and it's subsequent

expansion to other countries.

http://www.rotary5040.org/projects/clubfoot1.html

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

http://www.aaos.org/wordhtml/anmt2003/sciexh/se507.htm

http://www.cbmi.org.au/latest_news.php?doc_id=110

http://www.rotaryburnaby.org/heart_of_the_matter.htm

The hinged bar that you mention is probably the Langer CRS system.

About 6 years ago, while researching things on clubfoot, I bought

one just to see how it worked. After looking at how it functioned,

I realized that although it would allow the child more movement of

it's legs, that the way it holds the feet would not work for the

Ponseti method. One of the desingers of the Langer CRS system later

changed over to the Ponseti method. I had thought that

manufacturing of the CRS system has since been discontinued but here

is their web site. I would encourage you to try to stay with a

regular FAB/DBB http://www.lbguk.com/incidntls.htm#CRS

and (3-17-99)

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

>

> Hi

>

> Before I get to my question and something interesting I want to

share, I just thought I would give some background - more as

catharsis for myself then because you need to know it!

>

> I am a British ex-pat living in Kenya as my husband works for a US

NGO out here. Our third child Toby was born out here with severe bi-

lateral club feet 6 months ago. After some initial poor management

by someone who did not know what he was doing (ending up with Toby

having a huge pressure sore on his ankle and gangrene in one leg at

4 weeks) not to mention a host of other issues we eventually found a

mission hospital (quite a journey away as it is at the bottom of the

rift valley) called CURE which is US based mission group which have

set up orthopaedic hospitals in about 5 developing countries to

treat a number of conditions including club foot. They follow

ponsetti and we were doing great. The only problem is that Toby is

huge and so could only stay in casts up to a week before circulation

problems started which was problematic given the journey (I gave up

my job!). He had a tenotomy but we could not get the boots and bar

to stay on, so we went back into casts - in all he was in casts for

5 months. The second attempt at the FAB failed (even following all

the advice I got from this list, and having some socks with the

sticky pads couriered to me at great expense!). So the hospital made

their own AFOs for him (in black plastic as he is the only white

baby they see! - I'm often in the waiting room sat amongst a host of

Masai women with their kids strapped with cloth on their back all

smiling to themselves as I lug baby, car-seat, changing bag etc into

the treatment room!). The AFOs were only keeping his feet in neutral

and they were getting stiff. I then read about the problems with

AFOs and we even managed to get in a call to one of the doctors in

Ponsetti's clinic in Iowa who said get him back into casts and

repeat the tenotomy in order to get the dorsiflexion we needed for

the boots. This was about two weeks ago and I was really down as we

have had such problems with the casts - he gets terrible heat rash

and does not sleep.

>

> Anyway on a kind of whim I took him to see a lady who

practices 'rolfing' out here - it is a kind of deep massage where

they break down connective tissue. By the end of the first session

we had at least 10 degrees of dorsiflexion and got the boots on

(that was a week ago) and then I took him again this week and she

did some work on the fatty tissue on the top of his feet and has

visibly lengthened them so that the boots fit even better. I wanted

to know whether anyone else has tried rolfing? it has worked well

for me and he does not need to go back into casts. I am going to do

a few more sessions as she reckons she can help the supination of

his feet.

>

> The other thing I wanted to ask was....someone and I can't find it

now mentioned that there is a hinged bar you can get to help when

the baby is crawling. Toby is not crawling yet, but as it takes me

so long to get things sent out to Kenya I thought I should start

researching this now. Can anyone help with where I might get this

and let me know if it is of use? Also I have the Markell shoes (as

they were prepared to send them to us in Kenya) - will it work with

them?

>

> Thanks

> Yolande

>

>

[Guest guest]

,

Well now you've got my interest. I've not seen this Langer CRS system

and I can't tell from the picture exactly how it works; but you are

saying that it doesn't hold the foot in the proper position. I would

value your opinion on the Dobbs brace, have you seen the pictures of

it? There are a couple in the photos section under " Dobbs Brace " and

many more in the photos section of the CFPics group.

Thanks,

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobb's Brace 16-18/7)

> >

> > Hi

> >

> > Before I get to my question and something interesting I want to

> share, I just thought I would give some background - more as

> catharsis for myself then because you need to know it!

> >

> > I am a British ex-pat living in Kenya as my husband works for a US

> NGO out here. Our third child Toby was born out here with severe bi-

> lateral club feet 6 months ago. After some initial poor management

> by someone who did not know what he was doing (ending up with Toby

> having a huge pressure sore on his ankle and gangrene in one leg at

> 4 weeks) not to mention a host of other issues we eventually found a

> mission hospital (quite a journey away as it is at the bottom of the

> rift valley) called CURE which is US based mission group which have

> set up orthopaedic hospitals in about 5 developing countries to

> treat a number of conditions including club foot. They follow

> ponsetti and we were doing great. The only problem is that Toby is

> huge and so could only stay in casts up to a week before circulation

> problems started which was problematic given the journey (I gave up

> my job!). He had a tenotomy but we could not get the boots and bar

> to stay on, so we went back into casts - in all he was in casts for

> 5 months. The second attempt at the FAB failed (even following all

> the advice I got from this list, and having some socks with the

> sticky pads couriered to me at great expense!). So the hospital made

> their own AFOs for him (in black plastic as he is the only white

> baby they see! - I'm often in the waiting room sat amongst a host of

> Masai women with their kids strapped with cloth on their back all

> smiling to themselves as I lug baby, car-seat, changing bag etc into

> the treatment room!). The AFOs were only keeping his feet in neutral

> and they were getting stiff. I then read about the problems with

> AFOs and we even managed to get in a call to one of the doctors in

> Ponsetti's clinic in Iowa who said get him back into casts and

> repeat the tenotomy in order to get the dorsiflexion we needed for

> the boots. This was about two weeks ago and I was really down as we

> have had such problems with the casts - he gets terrible heat rash

> and does not sleep.

> >

> > Anyway on a kind of whim I took him to see a lady who

> practices 'rolfing' out here - it is a kind of deep massage where

> they break down connective tissue. By the end of the first session

> we had at least 10 degrees of dorsiflexion and got the boots on

> (that was a week ago) and then I took him again this week and she

> did some work on the fatty tissue on the top of his feet and has

> visibly lengthened them so that the boots fit even better. I wanted

> to know whether anyone else has tried rolfing? it has worked well

> for me and he does not need to go back into casts. I am going to do

> a few more sessions as she reckons she can help the supination of

> his feet.

> >

> > The other thing I wanted to ask was....someone and I can't find it

> now mentioned that there is a hinged bar you can get to help when

> the baby is crawling. Toby is not crawling yet, but as it takes me

> so long to get things sent out to Kenya I thought I should start

> researching this now. Can anyone help with where I might get this

> and let me know if it is of use? Also I have the Markell shoes (as

> they were prepared to send them to us in Kenya) - will it work with

> them?

> >

> > Thanks

> > Yolande

> >

> >

[Guest guest]

,

Where might I be able to find the pictures that are posted of the

DOCS Brace?

Thanks for any assistance you could give me.

Shelley

[Guest guest]

,

Where might I be able to find the pictures that are posted of the

DOCS Brace?

Thanks for any assistance you could give me.

Shelley

[Guest guest]

,

I have not seen a " Dobbs Brace " before, but I trust that Dr. Dobbs

knows what he is doing with Clubfoot. Dr. Dobbs was with Dr. Ponseti

at the U of Iowa for a year or more. I did look at the photos of the

Dobbs Brace and do have a question of how the dorsiflexion is

maintained for both feet. But I assume that it works because of Dr.

Dobbs experience with the Ponseti method.

> > >

> > > Hi

> > >

> > > Before I get to my question and something interesting I want to

> > share, I just thought I would give some background - more as

> > catharsis for myself then because you need to know it!

> > >

> > > I am a British ex-pat living in Kenya as my husband works for a

US

> > NGO out here. Our third child Toby was born out here with severe

bi-

> > lateral club feet 6 months ago. After some initial poor

management

> > by someone who did not know what he was doing (ending up with

Toby

> > having a huge pressure sore on his ankle and gangrene in one leg

at

> > 4 weeks) not to mention a host of other issues we eventually

found a

> > mission hospital (quite a journey away as it is at the bottom of

the

> > rift valley) called CURE which is US based mission group which

have

> > set up orthopaedic hospitals in about 5 developing countries to

> > treat a number of conditions including club foot. They follow

> > ponsetti and we were doing great. The only problem is that Toby

is

> > huge and so could only stay in casts up to a week before

circulation

> > problems started which was problematic given the journey (I gave

up

> > my job!). He had a tenotomy but we could not get the boots and

bar

> > to stay on, so we went back into casts - in all he was in casts

for

> > 5 months. The second attempt at the FAB failed (even following

all

> > the advice I got from this list, and having some socks with the

> > sticky pads couriered to me at great expense!). So the hospital

made

> > their own AFOs for him (in black plastic as he is the only white

> > baby they see! - I'm often in the waiting room sat amongst a host

of

> > Masai women with their kids strapped with cloth on their back all

> > smiling to themselves as I lug baby, car-seat, changing bag etc

into

> > the treatment room!). The AFOs were only keeping his feet in

neutral

> > and they were getting stiff. I then read about the problems with

> > AFOs and we even managed to get in a call to one of the doctors

in

> > Ponsetti's clinic in Iowa who said get him back into casts and

> > repeat the tenotomy in order to get the dorsiflexion we needed

for

> > the boots. This was about two weeks ago and I was really down as

we

> > have had such problems with the casts - he gets terrible heat

rash

> > and does not sleep.

> > >

> > > Anyway on a kind of whim I took him to see a lady who

> > practices 'rolfing' out here - it is a kind of deep massage where

> > they break down connective tissue. By the end of the first

session

> > we had at least 10 degrees of dorsiflexion and got the boots on

> > (that was a week ago) and then I took him again this week and she

> > did some work on the fatty tissue on the top of his feet and has

> > visibly lengthened them so that the boots fit even better. I

wanted

> > to know whether anyone else has tried rolfing? it has worked well

> > for me and he does not need to go back into casts. I am going to

do

> > a few more sessions as she reckons she can help the supination of

> > his feet.

> > >

> > > The other thing I wanted to ask was....someone and I can't find

it

> > now mentioned that there is a hinged bar you can get to help when

> > the baby is crawling. Toby is not crawling yet, but as it takes

me

> > so long to get things sent out to Kenya I thought I should start

> > researching this now. Can anyone help with where I might get

this

> > and let me know if it is of use? Also I have the Markell shoes

(as

> > they were prepared to send them to us in Kenya) - will it work

with

> > them?

> > >

> > > Thanks

> > > Yolande

> > >

> > >