Re: & Kaitlyn

June 14, 2004

Thanks for your reply, I didn't bookmark the page I found the study on

although I wish I had. I tried to find it again but I couldn't.

As for her DBB, I am absolutely sure it was set up correctly. She has

had 3 sets of shoes and 3 different bars, all with the same results. The

latest pair was the brand new Markell 1644's with plastizote inserts and the

adjustable red bar. We measured the angles and the width and everything was

according to Dr. P's method. Her foot was overcorrected on her last cast which

was

a healing cast.

We have spent so much time at the doctors that I am sure he hates to

see my name, the same for the brace shop. When we cut the hole in her shoes I

was sure that the problem would be fixed, imagine my surprise when I watched

her foot wiggle around everywhere. As for 2 different sizes, it is her

non-clubfoot that has the problems and the shoe fits fine except for her heel.

I

think that her feet are like mine, I have very narrow heels and wide toes. This

is the only reason I can figure that we can't get the heel tight enough

without causing more sores.

I know that there are a lot of opinions about the efficacy of the AFO

and DBB. She has been without any sort of brace for 3 weeks now and her foot

is still holding correction. She never had a tenotomy either...Maybe her

clubfoot is milder than most? I just can't see ordering the shoes just

for her to get more blisters- especially when insurance won't cover them.

Don't get me wrong, I want what is best for her but needlessly sore and

infected feet just don't seem right. The orthotist assured me that her foot will

be

externally rotated in the AFO. She said it will have tethers to hold the

rotation. We won't get the AFO until tomorrow, so I guess I will just have to

look at it and see what I think.

I wish I could find that study again, it was a study that followed 250

CF children for 4-5 years treated with the DBB and AFO. There was no

difference in the rate of relapse...it was done by a university so I believe it

to be

reputable. I have entered every keyword I can think of on my search engine

and I can't find it again... I will keep looking.

I appreciate your concern and I like the input, possibly you could

find the study saying that AFO's are not as effective and email it to me? I

couldn't find that one either.

I have attached a picture of Kaitlin's sore.

Freeman

Kaitlin Freeman 3/9/04 LCF

June 14, 2004

If you could get that info from her or tell me how to get the info, that

would be great. I don't know why an AFO would be useless in maintaining

correction...maybe the tethers are a new thing? It seems that people all over

the net

use them. I did find one study, although it is not the same one I found last

week...the link is Postoperative Clubfoot Orthosis | JACPOC Library, 1988 , it

is old and it really doesn't apply to me because Kaitlin is not post-op.

I thought about the Sandals, but I've heard of some people

getting blisters and I really can't afford to try them for $350 just for her to

get another blister. Like I said, she has not had any brace on for almost 3

weeks b/c whenever we try to put her DBB on she starts to get sores in less

than 2 hours...we have kind of given up on it I guess. I don't know exactly

what

her AFO will be like, I will see tomorrow. The orthotist said there will be

3 sets of tethers to hold her foot externally rotated. I don't know what it

will be like, but it has got to be better than no brace at all or sores on her

foot. Maybe we will try the DBB when her foot is bigger.

Thanks for your input,

Freeman

Kaitlin Freeman 3/9/04 LCF

June 14, 2004

We also used AFO's for a short time before going to Dr Ponseti. When

I e-mailed Dr Ponseti this is his reply for the AFO's:

" The usual clubfoot in an otherwise normal infant can be corrected

with about 5 or 6 casts which should be changed every 5-7 days. AFOs

are useless in maintaining a corrected clubfoot. "

If you are set on using AFO's I know that they can attach them to the

bar and that might help with keeping her foot at the correct

rotation. It was something we had talked to our orthist about or you

could wear the AFO's inside of the shoes on the bar. Hall

also had some info for me about why they don't use AFO's but I don't

have her e-mail here at work with me. Just a note ours didn't have

any kind of thethers so I don't have any info about them. The

sandals have a very high reputation of not causing blisters

so it might be something you want to look into further.

June 14, 2004

,

I know where you're coming from with the frustration with the DBB and

sores. It took us 7(!!!) weeks to get healed from the heel pressure sore

Darbi had. I KNOW how you feel and your poor little girl absolutely should

NOT have to deal with that. I too was ready to give up on the DBB and go

to AFO's (even asked about them but it takes 2w to make and that was too

long without a brace for me) but after hearing the info here and how the

relapse rate was so much higher I persevered and we managed to make it

through without any problems. I think I was one of the (if not the) first

person here to cut that hole - and I'm sure not the first parent to not get

the shoes on properly. You're right, if the heel is lifting it will never

heal that sore. I do have a couple of questions and perhaps some things to

try to see if you can get that heel down. I, like others am not fond of

the AFO's and I really do believe that Dr. Ponseti and the staff at Uof

Iowa know the best in regards to AFO's - being that they actually tried

them and concluded that they don't work (Dr. Ponseti's words - *worthless*

ring very clear to me).

I am of a very strong mind that the tongues on these shoes should NOT be up

over the top of the boot. I feel that was much of our problem and once I

moved it down so that the top of the boot could be closed up very tight at

the skinnier ankle area (as opposed to the fatty calf) her foot stayed down

perfectly. Here's what I did with the older style and I do the same with

the new ones now, you may consider trying it to see if her heel stays down

better. I took that tongue keeper slit and slit it longer towards the top

of the tongue. All the way to the stitches. Then I pull the tongue WAY

down over her toes. This makes the top of the tongue sit just under the

top of the boot and then I close it up tightly with the laces. Along with

dorsiflexing the foot and pushing down HARD when I put the shoes on this

really helped. I also had a gold non-adjustable bar that I could take the

shoes off of very easily. I am also of the mind that taking the shoes off

and putting them on without the bar makes a great deal of difference in

making sure they're fitting properly but this is hard to do with the red

adjustable bar. It's doable - I now have one so I am familiar with the

mechanics of this bar - and if you mark the bar with a sharpie it's easier

to put the shoes back on. I think for little babies they should start out

with the gold non-adjustable bar, take the shoes off when putting them on

till you're really good at it and when the parent is more adept and when

it's time to spend less time in the bar (after 23/7 and after 16-18 so you

don't have to put baby in shopping carts and exersaucers/jumpers, etc.)

then go to the adjustable bar and leave them on.

I really hope that you can make these shoes work somehow. If it were me

doing this all over again - and the shoes were available I'd

absolutely find some way to get them over AFO's but I still think with

proper fit and a little modification the Markell shoes are a very good

choice. Sure, the shoes are expensive but AFO's are more expensive

and with a co-pay (dunno if you have that) it might be a wash. I haven't

seen that people are getting blisters from them and I'm pretty sure most of

these parents are here on this list. One parent reported a pressure sore

where the buckle is but it wasn't serious yet and they got some good advice

on making it go away. They haven't posted that it got worse so I am

assuming everything is good. In my humble opinion... I think it's a very

good possibility that you will see some sort of relapse if you go to AFO's

only. So far, after being here over a year I haven't heard of one parent

who has used the AFO's and *not* had some kind of relapse issue. Now this

is anecdotal - and I may be wrong but it seems to me after reading lots of

posts that AFO's are not a good choice and that there are lots of other

options and ways to keep baby in the FAB minimizing your relapse

possibility a great deal.

The thing that bothered me about the information your Dr. gave you was that

he/she said that the DBB was used because it was cheaper. That is not the

case at all and I think it's interesting that this Dr. is prescribing the

DBB/FAB for this reason alone vs because it is a better brace to hold the

correction. It leads me to think there's less understanding about the

Ponseti Method and why it's done the way it's supposed to be done than any

Dr. who practices this method should have. If the Dr. doesn't believe/know

the stats and the reasons for the protocols I can't help but wonder if

they're applying it correctly in general. Also, leaving her out of either

casts or braces for 3 weeks really makes me wonder. Even if you can't see

a relapse right now it doesn't mean that something hasn't happened in that

time (so minimal you wouldn't notice it) and when you go to AFO's only the

possibility of relapse would be greater then because the AFO's

I haven't dumped any of the messages from this list in the trash for about

7mo's so I will look for the posts with the info about the AFO's for

you. I know there's been studies, and more quotes from Dr. P. posted in

that time. I did find a couple of posts from that detail some

studies and information in regards to AFO's and I'll paste those below.

Most importantly - don't give up and keep listening to your babe. There are

solutions and you will come through this with a happy baby when you figure

them out. 's posts below my sig.

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

Delivered-To: frogabog@...

Delivered-To: mailing list nosurgery4clubfoot

Date: Mon, 26 Apr 2004 01:53:45 -0000

To: nosurgery4clubfoot

,

There have been a few parents whose child's feet were relapsing

where it was possible to correct with casting without having to do

the ATTT. If not, then at 3 1/2 years old, it may be good to get

whatever is needed done sooner rather than later even if the ATTT

needs to be done. That will allow the bones and joints of the feet

to be growing in a corrected postion instead of a position that

isn't quite right. I would encourage you to contact Dr. Dietz

and/or Dr. Ponseti.

If the ATTT is not used, then I would think that the FAB/DBB would

probably be needed. If the ATTT is done, then I believe that

usually the FAB/DBB is not used.

Concerning AFO's, I beleive that Dr. Ponseti would feel that below

the knee AFO's do not have the ability to maintain the external

rotation of the foot and therefor don't really work. About 20 years

ago, while Dr. Ponseti was in retirement, the U of Iowa tried using

AFO's instead of the FAB/DBB and found that they didn't work as well

and so returned to the FAB/DBB.

As far as KAFO's or knee-ankle-foot-orthotics that extend above the

knee and therefor can help a bit in keeping the foot externally

rotated it states at the new Gobal HELP pamphlet on the Ponseti

method.

" Alternatives to foot abduction brace. Some surgeons have tried

to " improve " Ponseti management by modifying the brace protocol or

by using different braces. They think that the child will be more

comfortable without the bar and so advise use of straight last shoes

alone. This strategy always fails. The straight last shoes by

themselves do nothing. They function only as an attachment point for

the bar. Some braces are no better than the shoes by themselves and,

therefore, have no place in the bracing protocol. If well fitted,

the knee-ankle-foot braces, such as the Wheaton brace, maintain the

foot abducted and externally rotated. However, the knee-ankle-foot

braces keep the knee bent in 90 degrees of flexion. This position

causes the gastrocnemius muscle and Achilles tendon to atrophy and

shorten, leading to recurrence of the equinus deformity. This is

particularly a problem if a knee-ankle-foot brace is used during the

initial 3 months of bracing, when the braces are worn full time. In

summary, only the brace as described by Ponseti is an acceptable

brace for Ponseti management and should be worn at night until the

child is 3 to 4 years of age. " The Gobal HELP booklet can be found

at their site at http://www.global-

help.org/publications/pdfs/PonsetiBook.pdf

Stated simply, a bent leg KAFO keeps the leg bent at the knee. That

bend can be used to try to help abducted the feet outward. But in

that position, that achilles tendon is not stretched as much as if

the leg is straight and the feet held in 70 degrees of abduction and

slightly dorsiflexed. The FAB/DBB allows for much more foot, leg

and ankle motion that helps stretch out all of the ligaments and

tendons.

Here is a copy of an article written by Dr. Ponseti on the

topic of the Treatment of Relapsing Clubfoot in the Ponseti method.

It was a printed version of a Lecture delivered at the DC National

Congress of the Italian Society of Pediatric Orthopaedics and

Traumatology, in Rome, Italy at October 2001 and printed in a 2002

issue of the Iowa Orthopedic Journal.

Iowa Orthopedic Journal: Volume 22, 55-56, 2002

RELAPSING CLUBFOOT: CAUSES, PREVENTION, AND TREATMENT, Ignacio V.

Ponseti

INTRODUCTION

" Regardless of the mode of treatment, the clubfoot has a strong

tendency to relapse. Stiff, severe clubfeet and small calf sizes are

more prone to relapse than less severe feet. Clubfeet in children

with very loose ligaments tend not to relapse. Relapses are rare

after four years of age. "

" Not all components of the clubfoot tend to relapse to the same

degree. In most of our cases, forefoot correction is permanent

without metatarsus adductus. The relapse of the cavus deformity is

rare and usually mild. The most important relapses occur in the

hindfoot, first in the equinus, and then in the heel varus. In some

relapsed clubfeet, the heel varus is very severe, while in others it

is mild. Rarely, the heel in equinus may go into valgus resulting in

a calcaneovalgus deformity. This is a frequent occurrence in

surgically treated clubfeet In our experience, most relapses develop

gradually and may be difficult to recognize in the early stages. A

relapse is detected when there is an appearance of a slight equinus

and varus deformity of the heel, most often without increased

adduction and cavus in the forefoot When walking, the child tends to

put more weight on the outside of the sole of the foot. "

CAUSES

" It is wrongly assumed that relapses occur because the deformity has

not been completely corrected. Actually, relapses are caused by the

same pathology that initiated the deformity. Therefore, when we

understand the pathogenesis of the clubfoot, the causes of the

relapse will become clear. "

" The clubfoot in otherwise normal children is a developmental anomaly

originating after the third month of intrauterine life. It is induced

by an unknown dysfunction in the posterior and medial aspects of the

lower leg, ankle and foot. There is a slight decrease in size of the

muscles, and an excess of colagen synthesis with retracting fibrosis

in the medial and posterior tarsal ligaments, in the deep fascia, the

tendo Achilles, and the posterior tibial tendon. These changes induce

severe equinus, medial displacement of the navicular, heel varus and

foot adduction. "

" The period of dysfunction causing the deformity starting in the

middle third of pregnancy lasts to the third or fourth year of life.

In mild cases, it may start in late fetal life, and remain active for

only a few months after birth. In all cases, the resulting fibrosis

is most pronounced from. a few weeks preceding birth, to a few months

after birth. This is the period when collagen accretion is greatest

in tendons and ligaments of normal mammals and presumably also of

man. The speed of growth of the foot decreases after the first year

of life, diminishing greatly after five years. "

" Relapses appear to be related to the intensity of collagen synthesis

as the foot grows. Thus, relapses occur swiftly in premature infants

and more slowly in older infants. Relapses are less common and less

severe in mild club feet with little fibrosis and in children with

loose ligaments. They occur because the factors inducing the

deformity are still active. Relapses are rare after four years of

age, regardless of whether the deformity is fully or partially

corrected. "

" The clubfoot is no different from other non-embryonic human

deformities such as torticoris, scoliosis, or Dupuytren's

contracture, in that it develops in normal individuals, and

progresses for a limited time before becoming inactive. Torticollis

usually develops within days after birth and increases for a few

weeks. Idiopathic scoliosis starts in late childhood and increases

throughout adolescence. Dupuytren's contracture develops at maturity

and may be active for a few years. Clubfoot develops in the middle of

pregnancy and is active during the first to fourth years of life. In

torticollis, Dupuytren's contracture, and presumably in clubfoot, a

localized temporary increase of collagen synthesis is a common

pathologic feature. "

" With our technique, most congenital clubfeet in infants are

corrected within four to six weeks. However, splinting for several

months or years is indispensable to help prevent relapses. Since the

main corrective force of the varus and adduction of the clubfoot is

abduction (external rotation) of the foot under the talus, a splint

is needed to maintain the foot in the same degree of abduction as it

was in the last plaster cast. This is best accomplished with the feet

in well-fitted, open-toed high top shoes with a well-molded heel

attached in 70 degrees external rotation to a bar of about the length

between the baby's shoulders. Unless the feet are sprinted in firm

external rotation, the pull of the retracting fibrosis in the

ligaments of the medial aspect of the ankle and of the tibialis

posterior and toe flexors is strong enough to cause a recurrence of

the deformity in most feet. "

" The splints are worn full time for two to three months, and

thereafter at night and naps for two to four years. The splint should

maintain the foot in 70 degrees of abduction to prevent relapse of

the varus deformity of the heel of the adduction of the foot and the

in-toeing. The ankle should be in dorsiflexion to prevent relapse of

the equinus. This is accomplished by bending the splint with the

convexity of the bar distally directed. A splint or strapping that

cannot firmly maintain the foot in marked abduction without pronation

is ineffectual. The added advantage of shoes attached to a bar, as

opposed to a fixed splint, is that it allows motion of the feet,

ankles and knees. Most babies feel uncomfortable for the first two to

three days when trying to kick their legs alternatively. Parents can

easily teach their babies to kick both legs simultaneously. The

splints are then well accepted. "

" In the first 20 years of my practice, relapses occurred in about

half of the patients at ages ranging from ten months to five years,

averaging two-and-one-half years. Usually, relapses were observed

from two to four months after the splints were prematurely discarded

at the families' own initiative, believing that the correction was

stable. More recently, relapses have been less frequent because, for

one thing, I have further overcorrected the deformity in the last

plaster and to be certain that the calcaneus is fully abducted and

its anterior joint surface is well under the head of the talus.

Secondly, there has been greater awareness on the part of the Parents

regarding the importance of maintaining the night splints after

correction for three to four years. "

" In recent years, I have treated 90 patients - 52 of them initially

seen from birth to three months of age, and 38 from three Months to

one year of age. Seventy Percent of the patients had plaster casts or

physical therapy elsewhere. Forty patients had been previously

indicated for surgery by the initial treating Physician. To my

surprise, it was possible to successfully correct all these feet with

manipulations, and four or five plaster casts, changed every five

days. I performed percutaneous Achilles tenotomy in 84 percent of the

patients. Eighty-eight percent of the patients were compliant with

the use of the foot abduction splint. There were 14 relapses. The

rate of relapse was seven percent in compliant patients, compared to

78 Percent in non-compliant patients. Relapses were unrelated to age

at presentation or to the number of casts required for correction. "

TREATMENT

" In general the original correction may be recovered in four to six

weeks with manipulations and plaster casts changed every 14 days,

holding the foot in marked abduction and as much dorsiflexion as

possible at the ankle in the last cast. This treatment is followed by

lengthening the tendo Achilles when dorsiflexion of the ankle is less

than 15 degrees. A percutaneous tenotomy can be performed until one

year of age. [More recently, Dr. Ponseti mentioned tenotomies done

later than one year, up to at least 18 months of age] The last

plaster cast is left on for three to four weeks. When the cast is

removed, shoes attached in external rotation to a bar are worn at

night and with naps, until the child is about four years old. "

" To prevent further relapses, the tendon of the tibialis anterior

muscle is transferred to the third cuneiform in children over two-and

one-half years of age, if this muscle tends to strongly supinate the

foot. Often this supination takes place when the medial naviculare

displacement is not fully corrected and the AP talocalcaneal angle is

under 20 degrees. Transfer of the tibiaiis anterior tendon averts

further relapses, maintains the correction of the heel varus,

improves the anteroposterior talocalcaneal angle, and thus greatly

reduces the need for medial release operations. The tibialis anterior

tendon transfer is an easy operation and much less damaging to the

foot than the release of the tarsal joints. Joint releases are needed

when the deformity recurs in spite Of the tibialis anterior transfer.

The tibialis anterior tendon should never be split so as to not lose

its eversion power, nor should it be transferred to the fifth

metatarsal or to the cuboid, since this would excessively evert the

foot, causing severe foot pronation and heel valgus. "

CONCLUSION

" Since I developed this method of treating clubfoot 50 years ago,

only an occasional posterior release operation of the ankle and

subtalar joints has been necessary. In the 90 patients I treated in

recent years, four patients required surgery: one posterior release

of the ankle, and three anterior tibialis tendon transfers to the

third cuneiform combined with a lengthening of the tendo Achilles. "

Lecture delivered at the DC National Congress of the Italian Society

of Pediatric Orthopaedics and Traumatology, in Rome, Italy, October

2001.

Department of Orthopaedic Surgery University of Iowa Iowa City, Iowa,

U.S.A

I thought that many might be interested in this information.

and (3-17-99)

>If you could get that info from her or tell me how to get the info, that

>would be great. I don't know why an AFO would be useless in maintaining

>correction...maybe the tethers are a new thing? It seems that people all

>over the net

>use them. I did find one study, although it is not the same one I found last

>week...the link is Postoperative Clubfoot Orthosis | JACPOC Library, 1988

>, it

>is old and it really doesn't apply to me because Kaitlin is not post-op.

> I thought about the Sandals, but I've heard of some people

>getting blisters and I really can't afford to try them for $350 just for

>her to

>get another blister. Like I said, she has not had any brace on for almost 3

>weeks b/c whenever we try to put her DBB on she starts to get sores in less

>than 2 hours...we have kind of given up on it I guess. I don't know

>exactly what

>her AFO will be like, I will see tomorrow. The orthotist said there will be

>3 sets of tethers to hold her foot externally rotated. I don't know what it

>will be like, but it has got to be better than no brace at all or sores on

>her

>foot. Maybe we will try the DBB when her foot is bigger.

>

>Thanks for your input,

> Freeman

>Kaitlin Freeman 3/9/04 LCF

>

June 14, 2004

,

That's very interesting about the tethers. I have never heard of

AFOs with tethers before. I wonder if they'll be tethering to her

thigh or something? You'll have to let us know.

If Kaitlyn's feet are unusually shaped, perhaps the sandals

would be an alternative for you if this tethered AFO doesn't work.

Did the orthotist who fitted Kaitlyn note that her heels were very

narrow? I would think that they'd recognize this as an issue and try

to deal with it with inserts or custom shoes.

Hopefully you can share pictures with us through the CFPics group

(this group doesn't accept attachments to posts due to security

(virus) reasons), or set up a yahoo photo album and share the link

with us. I'm curious to know how the tethers will work!

Don't worry about the docs & orthotists......they should want to help

Kaitlyn get through these issues- and quickly. If you're getting the

feeling that they don't want to see you b/c you're there too often,

then it's time to start looking for other service providers!

I, too, would worry about her foot being out of a brace for 3 weeks

and not relapsing. Are you confident that the foot is corrected?

How much dorsiflexion does she have? Don't take the questions the

wrong way- I'm just trying to ferret out why her " good " foot is

causing you shoe issues, and the clubfoot hasn't changed appearance

despite 3 weeks without bracing. It's very puzzling to me.

Just make sure that she has the dorsiflexion and external rotation

covered with her bracing, in whatever form it takes. You're right,

no child should have sores- braces should *not* cause any pain to a

child! As an aside- AFO's are commonly prescribed for clubfoot, but

mostly by doctors who are not following the Ponseti method (a lot of

kids will get them after surgical correction), although we did have

one Chicago area mom on our board whose doctor used AFO's mounted on

a bar so it was a AFO/FAB hybrid.

Keep us posted on Kaitlyn's progress!

&

> Thanks for your reply, I didn't bookmark the page I found the study

on

> although I wish I had. I tried to find it again but I couldn't.

> As for her DBB, I am absolutely sure it was set up

correctly. She has

> had 3 sets of shoes and 3 different bars, all with the same

results. The

> latest pair was the brand new Markell 1644's with plastizote

inserts and the

> adjustable red bar. We measured the angles and the width and

everything was

> according to Dr. P's method. Her foot was overcorrected on her

last cast which was

> a healing cast.

> We have spent so much time at the doctors that I am sure he

hates to

> see my name, the same for the brace shop. When we cut the hole in

her shoes I

> was sure that the problem would be fixed, imagine my surprise when

I watched

> her foot wiggle around everywhere. As for 2 different sizes, it is

her

> non-clubfoot that has the problems and the shoe fits fine except

for her heel. I

> think that her feet are like mine, I have very narrow heels and

wide toes. This

> is the only reason I can figure that we can't get the heel tight

enough

> without causing more sores.

> I know that there are a lot of opinions about the efficacy

of the AFO

> and DBB. She has been without any sort of brace for 3 weeks now

and her foot

> is still holding correction. She never had a tenotomy

either...Maybe her

> clubfoot is milder than most? I just can't see ordering the

shoes just

> for her to get more blisters- especially when insurance won't cover

them.

> Don't get me wrong, I want what is best for her but needlessly sore

and

> infected feet just don't seem right. The orthotist assured me that

her foot will be

> externally rotated in the AFO. She said it will have tethers to

hold the

> rotation. We won't get the AFO until tomorrow, so I guess I will

just have to

> look at it and see what I think.

> I wish I could find that study again, it was a study that

followed 250

> CF children for 4-5 years treated with the DBB and AFO. There was

no

> difference in the rate of relapse...it was done by a university so

I believe it to be

> reputable. I have entered every keyword I can think of on my

search engine

> and I can't find it again... I will keep looking.

> I appreciate your concern and I like the input, possibly you

could

> find the study saying that AFO's are not as effective and email it

to me? I

> couldn't find that one either.

> I have attached a picture of Kaitlin's sore.

>

> Freeman

> Kaitlin Freeman 3/9/04 LCF

>

June 14, 2004