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Our baby, (6 weeks old), had his tenotomy yesterday and seems to

be doing really well. How do you know if they are having any pain?

Should they be in much pain after that minor surgery? He seems to be

acting about the same as just after getting new casts. We are still

working out the details of how to get his braces fitted and ready so

that there isn't a lapse in correction after he gets his casts off on

August 1st. It's all a bit confusing so I'm trying to keep up with the

info provided on this site and see how other parents are working out

issues that come along. I did ask the doctor about the articulating

bar and he said he wants to stick strictly with Ponseti's instructions

and not try anything new. Which was disappointing on one hand because

I want the baby to be as comfortable as possible but on the other hand

it's really reassuring that he's staying with the strict treatment

process. I'm just really excited that some one has figured out how to

treat these club feet and fix them without the years of surgery and

the pain you end up with as an adult. I had 13 surgeries from 10

months to 36 years for one club foot and it almost makes me angry that

the doctors didn't listen to Dr. Ponseti along time ago! Why was he

ignored for like 40 years?

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My baby slept through the tenotomy, waking up enough to go 'ah' before

going right back to sleep. He was fine afterwards, didn't even need

tylenol. If is in pain he'll do the one thing he can do at 6

weeks - cry! If he's acting fine I'd assume there's no pain. :)

Fitting the booties took about 5 mins for us. They were ready the day

he had his procedure, the docs put them on a shelf for when we came

back 3 weeks later. I scheduled both apts on the same day. I was told

most insurances don't cover the shoes (and mine didn't) and Sully was

boarderline between sizes, I got the larger size to squeeze all the

wear I could out of them. Sully was pretty mad the first few days

that his feet were in the booties and attached (non-articulating bars

here!) but he got over it - now he does not even cry when I put them

on... just squirm!!!

There's a great group of folks here, don't be afraid to ask anything!!!

mommy to Sully 3/16/06 Left club

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had no problems after the tenotomy either. We also had

the " vintage " FAB with the standard red adjustable length bar and

the old Markell shoes with the plastizode insert (foam heel counter)

and we never had a single issue or sore/blister to speak of.

Hopefully you'll have no problems either! It's easy to anticipate

all kinds of trouble when you read the posts on a " support board "

since the majority of posts are from people who need *help*, but so

many more families have no issues and don't often take the time to

share " success stories " on a support board. :)

, I noticed that our kids share the same birthday and the same

left clubfoot, only was born in 2000. :)

& (3-16-00, lcf)

>

> My baby slept through the tenotomy, waking up enough to go 'ah'

before

> going right back to sleep. He was fine afterwards, didn't even

need

> tylenol. If is in pain he'll do the one thing he can do at 6

> weeks - cry! If he's acting fine I'd assume there's no pain. :)

> Fitting the booties took about 5 mins for us. They were ready the

day

> he had his procedure, the docs put them on a shelf for when we came

> back 3 weeks later. I scheduled both apts on the same day. I was

told

> most insurances don't cover the shoes (and mine didn't) and Sully

was

> boarderline between sizes, I got the larger size to squeeze all the

> wear I could out of them. Sully was pretty mad the first few days

> that his feet were in the booties and attached (non-articulating

bars

> here!) but he got over it - now he does not even cry when I put

them

> on... just squirm!!!

> There's a great group of folks here, don't be afraid to ask

anything!!!

>

>

> mommy to Sully 3/16/06 Left club

>

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Generally the child is fitted for the shoes prior to the tenotomy. This way they

can go straight into the bar. It is the 's that s/he is getting? If so,

it takes about 2 weeks to get those! They have to custom size them. If it's the

Markell's it's possible they may have a stock pile of different sizes. I would

definatley call and ask you Dr. who the Orthotist is, and then call them! If

they dont have them they may be able to do a quick change of the Tenotomy cast

and measure, take impressions of the feet for fitting in the brace, then reapply

a new Tenotomy cast? Also, if they dont have the brace right away, you may want

to insist on a 'holding cast' until you get them! Their newly little corrected

feet can relapse in a days time! As far as the articulating bar, my daughter has

never had one. She adjusted to the 's in a day or 2. There is some mixed

opinions here about it, but I can say that it is not necessary.

Christee

3 boys

Lilee A-Typical (11 months)

P/M's 10hrs

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--- The Portell Family

wrote:

> Our baby, (6 weeks old), had his tenotomy

> yesterday and seems to be doing really well. How do

> you know if they are having any pain? Should they

> be in much pain after that minor surgery? He seems

> to be acting about the same as just after getting

> new casts.

I'd say if he's acting the same then he definitely

isn't in any pain, otherwise I'm sure you'd notice a

difference. :) My son didn't seem to be in any pain

after the tenotomy either, we didn't give him any pain

killers and he was fine.

> We are still working out the details of how to get

> his braces fitted and ready so that there isn't a

> lapse in correction after he gets his casts off on

> August 1st.

Our doctor ordered the shoes before the tenotomy so we

got them straight after the last cast came off. I

definitely wouldn't leave him without cast or braces

for even a day since at that stage a relapse can

happen within hours I think.

We use the Markell shoes and they don't need 'fitting'

as such, we just got the smallest size available and

put them on him. :) It took us about 10 minutes each

time at first but it doesn't take long to get that

down to 10 seconds a foot. ;)

> I did ask the doctor about the articulating bar and

> he said he wants to stick strictly with Ponseti's

> instructions and not try anything new. Which was

> disappointing on one hand because I want the baby

> to be as comfortable as possible but on the other

> hand it's really reassuring that he's staying with

> the strict treatment process.

My son Alister has just the normal bar and I don't

think he's uncomfortable with it. The main thing is

to make sure that the widths is correct, ie the heels

should be about shoulder width apart. He learned to

crawl, stand, and even walk with the bar on. Now he

only wears it at night and he sleeps 'like a baby'. :)

He even asks for his shoes when he goes to bed and

thinks I've forgotten.

All the best,

with (3.5y)

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

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At 04:25 PM 7/7/2006, you wrote:

>Well, we didn't get him fitted before the tenotomy so it looks like

>our best bet, according to the orthotics office, is for them to get

>permission to cut the cast off a few days before he is due to get

>the tenotomy cast off, measure, order shoes (Markell's) if not in

>stock, then put the casts back on (taped up), she had a name for

>doing this to the cast but I can't remember what it was. You guys

>know what I'm talking about though.

hummm... really never heard of this being done. I would suggest

that you ask them to re-cast him from scratch. It doesn't sound like

a good idea to me to tape the cast back up. You really want that

cast to hold tight, any movement inside could be problematic to his

correction. Really, now that I think harder on it, I think that is a

bad idea. Is the doctor not able to be there when you do this or

what? When they cut the cast off it ends up cracking it a bit

anyway. I just wouldn't trust it.

Do you know what kind of shoes you're getting?

> Ugh, all this new terminology.

>They do have a supply of those on hand but if not his size it take a

>couple days for them to get them. I think it will work out doing it

>that way since we're dealing with commuting all around the central

>valley of California to do all this. I so appreciate everyone's

>suggestions and input on this because then I knew what questions to

>ask when I called.

>

>Now, no one has answered my last question- Why did all the doctors

>in this country ignore Dr. Ponseti for 40 years? It seems like many

>children have suffered because the doctors weren't staying on top of

>the latest treatment methods, especially something that was working.

you know... this is the big unanswered question. I don't think

anyone really knows *why*. It's as crazy to us as it is to you that

it was ignored for so long. Only thing I can come up with is egotism

or perhaps surgery is simply too lucrative? The orthopaedic

community embraced Dr. Ponseti's paper about metatarsus adductus in

the late 60's and abandoned nearly all treatment of MA due to the

paper/research of Dr. Ponseti's saying it corrects itself with

time. And the clubfoot paper published shortly thereafter... not

embraced. Ignored for 40+ years. Actually... his work is still

ignored by many but it's getting better for sure.

Sad really. Sorry I don't have any real answer for you. We all

probably wonder at this regularly as we look at our children's feet

working so nice and perfect... WHY????

Kori

>

> >

> > Generally the child is fitted for the shoes prior to the tenotomy.

>This way they can go straight into the bar. It is the 's

>that s/he is getting? If so, it takes about 2 weeks to get those!

>They have to custom size them. If it's the Markell's it's possible

>they may have a stock pile of different sizes. I would definatley

>call and ask you Dr. who the Orthotist is, and then call them! If

>they dont have them they may be able to do a quick change of the

>Tenotomy cast and measure, take impressions of the feet for fitting

>in the brace, then reapply a new Tenotomy cast? Also, if they dont

>have the brace right away, you may want to insist on a 'holding

>cast' until you get them! Their newly little corrected feet can

>relapse in a days time! As far as the articulating bar, my daughter

>has never had one. She adjusted to the 's in a day or 2.

>There is some mixed opinions here about it, but I can say that it is

>not necessary.

> > Christee

> > 3 boys

> > Lilee A-Typical (11 months)

> > P/M's 10hrs

> >

> >

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Jodi,

I'm not so sure about this putting the cast back together thing, I

actually can't say I've heard of this being done. I gotta run, I have

tired cranky boy here. I'll get back to you on that other question,

hopefuuly tomorrow.

allison

> >

> > Generally the child is fitted for the shoes prior to the tenotomy.

> This way they can go straight into the bar. It is the 's

> that s/he is getting? If so, it takes about 2 weeks to get those!

> They have to custom size them. If it's the Markell's it's possible

> they may have a stock pile of different sizes. I would definatley

> call and ask you Dr. who the Orthotist is, and then call them! If

> they dont have them they may be able to do a quick change of the

> Tenotomy cast and measure, take impressions of the feet for fitting

> in the brace, then reapply a new Tenotomy cast? Also, if they dont

> have the brace right away, you may want to insist on a 'holding

> cast' until you get them! Their newly little corrected feet can

> relapse in a days time! As far as the articulating bar, my daughter

> has never had one. She adjusted to the 's in a day or 2.

> There is some mixed opinions here about it, but I can say that it is

> not necessary.

> > Christee

> > 3 boys

> > Lilee A-Typical (11 months)

> > P/M's 10hrs

> >

> >

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Really! Now you see how on top of it you have to be. Well, it was

the receptionist at the brace office that said that would be a

possibility and not the doctor. I'm glad I asked on the message

board about it before calling the doctor and he thinks I'm nuts.

This is the problem we have- the casts come off at 9:45 a.m. on

August 1st in Fresno which is about 3 hours north of us, the brace

office is a two hour drive back to the south but on the way home and

I can get an appointment for the same day in the early afternoon,

hopefully right after the drive leaving Fresno. If they have the

shoes (Markell's) in his size wouldn't it be ok for that long and

they are able to fit him and give us instructions? Then I am

guessing we go back to Doctor Halsey in Fresno a few days later for

him to check it. The receptionist said they've worked with Dr.

Halsey before so this shouldn't be so difficult to arrange, unless

it wasn't for a clubfoot patient then that might be where the bad

info is coming in.

> > >

> > > Generally the child is fitted for the shoes prior to the

tenotomy.

> > This way they can go straight into the bar. It is the 's

> > that s/he is getting? If so, it takes about 2 weeks to get

those!

> > They have to custom size them. If it's the Markell's it's

possible

> > they may have a stock pile of different sizes. I would

definatley

> > call and ask you Dr. who the Orthotist is, and then call them!

If

> > they dont have them they may be able to do a quick change of the

> > Tenotomy cast and measure, take impressions of the feet for

fitting

> > in the brace, then reapply a new Tenotomy cast? Also, if they

dont

> > have the brace right away, you may want to insist on a 'holding

> > cast' until you get them! Their newly little corrected feet can

> > relapse in a days time! As far as the articulating bar, my

daughter

> > has never had one. She adjusted to the 's in a day or 2.

> > There is some mixed opinions here about it, but I can say that

it is

> > not necessary.

> > > Christee

> > > 3 boys

> > > Lilee A-Typical (11 months)

> > > P/M's 10hrs

> > >

> > >

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NO. I wouldn't do that. Have the cast removed, fit the kid to shoes and RE

cast with NEW casts!!!

s.

Re: New Member with Questions

Jodi,

I'm not so sure about this putting the cast back together thing, I

actually can't say I've heard of this being done. I gotta run, I have

tired cranky boy here. I'll get back to you on that other question,

hopefuuly tomorrow.

allison

> >

> > Generally the child is fitted for the shoes prior to the tenotomy.

> This way they can go straight into the bar. It is the 's

> that s/he is getting? If so, it takes about 2 weeks to get those!

> They have to custom size them. If it's the Markell's it's possible

> they may have a stock pile of different sizes. I would definatley

> call and ask you Dr. who the Orthotist is, and then call them! If

> they dont have them they may be able to do a quick change of the

> Tenotomy cast and measure, take impressions of the feet for fitting

> in the brace, then reapply a new Tenotomy cast? Also, if they dont

> have the brace right away, you may want to insist on a 'holding

> cast' until you get them! Their newly little corrected feet can

> relapse in a days time! As far as the articulating bar, my daughter

> has never had one. She adjusted to the 's in a day or 2.

> There is some mixed opinions here about it, but I can say that it is

> not necessary.

> > Christee

> > 3 boys

> > Lilee A-Typical (11 months)

> > P/M's 10hrs

> >

> >

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I suppose if it's just for a couple of hours then the

'putting the cast back together' thing might be ok?

At least better than nothing. Or can't you go past

the brace shop on the way to the hospital so that you

have the shoes straight away? Or maybe soak the cast

off yourself to get the shoes fitted and then drive to

the hospital for the appointment?

I think what would worry me most would be that the

shoes might not be available when you get there and

then you're kind of stuck with nothing to prevent a

relapse if you know what I mean...

with (3.5y)

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

--- The Portell Family

wrote:

> Really! Now you see how on top of it you have to be.

> Well, it was

> the receptionist at the brace office that said that

> would be a

> possibility and not the doctor. I'm glad I asked on

> the message

> board about it before calling the doctor and he

> thinks I'm nuts.

>

> This is the problem we have- the casts come off at

> 9:45 a.m. on

> August 1st in Fresno which is about 3 hours north of

> us, the brace

> office is a two hour drive back to the south but on

> the way home and

> I can get an appointment for the same day in the

> early afternoon,

> hopefully right after the drive leaving Fresno. If

> they have the

> shoes (Markell's) in his size wouldn't it be ok for

> that long and

> they are able to fit him and give us instructions?

> Then I am

> guessing we go back to Doctor Halsey in Fresno a few

> days later for

> him to check it. The receptionist said they've

> worked with Dr.

> Halsey before so this shouldn't be so difficult to

> arrange, unless

> it wasn't for a clubfoot patient then that might be

> where the bad

> info is coming in.

>

>

> > > >

> > > > Generally the child is fitted for the shoes

> prior to the

> tenotomy.

> > > This way they can go straight into the bar. It

> is the 's

> > > that s/he is getting? If so, it takes about 2

> weeks to get

> those!

> > > They have to custom size them. If it's the

> Markell's it's

> possible

> > > they may have a stock pile of different sizes. I

> would

> definatley

> > > call and ask you Dr. who the Orthotist is, and

> then call them!

> If

> > > they dont have them they may be able to do a

> quick change of the

> > > Tenotomy cast and measure, take impressions of

> the feet for

> fitting

> > > in the brace, then reapply a new Tenotomy cast?

> Also, if they

> dont

> > > have the brace right away, you may want to

> insist on a 'holding

> > > cast' until you get them! Their newly little

> corrected feet can

> > > relapse in a days time! As far as the

> articulating bar, my

> daughter

> > > has never had one. She adjusted to the

> 's in a day or 2.

> > > There is some mixed opinions here about it, but

> I can say that

> it is

> > > not necessary.

> > > > Christee

> > > > 3 boys

> > > > Lilee A-Typical (11 months)

> > > > P/M's 10hrs

> > > >

> > > > [Non-text portions of this message have been

> removed]

> > > >

> > >

> >

>

>

>

>

>

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Jodi,

Sorry it has taken me so long to get back to you, I was away from the

computer most of the weekend. Here's what i would do, did you print

off the Markell size sheet from their website like we talked about?

If so, and this is going to be really rough, you could use that to

make your best guess on shoe size. He's not a little tiny baby, and

the Markells come in sizes 0000, 000, 00, 0 etc. If he is average I

would guess either a 000 or 00. Call the orthotics place and tell

them you need to know what they have in stock. If they have an

assortment of 0, 00 and 000 in stock (and probably in an assortment of

widths, I'm guessing from his pictures narrow or medium) then you

could go with the plan to have the cast removed and drive down there

and get sized and pick them up the same day. If they don't have an

assortment of sizes in stock then I would plan to soak the casts off,

go there first and be sized for them to order shoes and then go to Dr.

Halsey for him to check 's feet and re-cast him until the shoes

come in. Of course you should run this by Dr. Halsey, but tell him

people do this all the time, and we know what we're talking about.

: ) We can also help you with how to soak off the casts.

Now, your other question...I think there are a combination of factors

as to why the medical community hasn't embraced the Ponseti method --

or at least why it has taken them so long to at least start getting

with the program. The first of which is misunderstanding, which is

still prevalent today; to a great many orthopaedic physicians casting

is casting - they already know about serial casting, it's been around

'forever', it has LONG been the practice to begin correction via

serial casting. The difference is in how the manipulation of the

bones takes place, and of course in the precision in which the cast is

molded. One of the leaders in the field at the time was JH Kite, and

I think the difference between his method and Dr. Ponseti's was just

not understood, either through indifference or incompetence. Even as

recently as 2004 there have been journal articles published that show

a complete lack of understanding of the technique, even by those who

purport to use the method. So much of the technique is based on a

doctor's knowledge of the kinematics of the bones of the foot, all

they have to do is look at it closely to see the difference between

what Dr. Ponseti does and traditional serial casting, but they just

don't get it.

Also, Dr. P says that he takes the blame (as if) for not being more

vocal about " pushing " his method, I do think that it was difficult for

him to say that Kite was wrong, which he did say in his 1996 book, but

I don't think that people in 1950 would have taken kindly to some

'young kid' saying that Dr. Kite was wrong (Kite first published about

his conservative treatment, I believe, in 1939).

Some of the problem is ego, some doctors don't want to be shown to be

wrong, they don't want to conform to do things someone else's way, and

they want to make their own mark in the world - thus all the

'tweaking' of the method that goes on.

Another major factor was VJ Turco, who was pretty much the founder of

clubfoot surgery as we know it today, he was bigtime in the late 60's

when we were born and had our feet corrected. Jescie, who is a member

of this group (and the CF group) was actually treated by him. CF

surgery was a sign of the times, they could correct it with surgery,

much more easily than with all the casting that Kite's method required

(sometimes a year or more of casting!) and of course the Kite method

didn't succeed a lot of the time - there would still be residual

problems, so surgery was 'the way it was done'.

It wasn't until Ponseti and others started seeing the long-term

results of the surgeries that they realized that the surgery was not

all it was cracked up to be (to say the least), actually Kite said

this all the way back in '39 but they didn't listen to him either. It

really is sad that STILL it is such a struggle to find a good

physician who is practicing the Ponseti method and doing it well.

And, there are STILL doctors out there who consider the method to be a

" fad " that will go away after Dr. P is no longer with us. So...sorry

to be so long winded, but that's my take on it, AND the reason so many

of us come here to help the new parents who come along to find their

way to a doctor who can correct their child's feet the " right way " .

HTH,

> > > >

> > > > Generally the child is fitted for the shoes prior to the

> tenotomy.

> > > This way they can go straight into the bar. It is the 's

> > > that s/he is getting? If so, it takes about 2 weeks to get

> those!

> > > They have to custom size them. If it's the Markell's it's

> possible

> > > they may have a stock pile of different sizes. I would

> definatley

> > > call and ask you Dr. who the Orthotist is, and then call them!

> If

> > > they dont have them they may be able to do a quick change of the

> > > Tenotomy cast and measure, take impressions of the feet for

> fitting

> > > in the brace, then reapply a new Tenotomy cast? Also, if they

> dont

> > > have the brace right away, you may want to insist on a 'holding

> > > cast' until you get them! Their newly little corrected feet can

> > > relapse in a days time! As far as the articulating bar, my

> daughter

> > > has never had one. She adjusted to the 's in a day or 2.

> > > There is some mixed opinions here about it, but I can say that

> it is

> > > not necessary.

> > > > Christee

> > > > 3 boys

> > > > Lilee A-Typical (11 months)

> > > > P/M's 10hrs

> > > >

> > > >

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No problem, it's probably good for you to get away for your computer

and enjoy doing something else once in a while! I have to say that

it's great to have so much knowledge available to us new members

from all of the older members that really know they're stuff! What a

blessing you and many others are, I love talking to someone who

knows so much about something that I want to know about because of

our urgent need. Anyway, thank you. This background on treatment

methods is interesting. Aggrivating at the same time because some of

us are living with the bad ideas of previous treatments! Seeing the

difference in how is progressing and soooo quickly, I am

absolutely shocked at how effective Dr. Ponseti's method is. The

truth is I stumbled on a doctor who uses this method completely

accidentally and had never heard the name Ponseti until 's

first appointment so I feel incredibly blessed that we don't have to

go through the (knock on wood) doctor switching and fix what some

other doctor has done wrong like so many seem to have been through.

I also stumbled on to these web groups accidentally at a perfect

time because I saw a link from Web MD while researching something

totally unrelated. Devine intervention I tell you, it's definately

more than luck!

Regarding his shoe fitting- I didn't take the Markell shoe charts up

to Madera to have Dr. Halsey check his size before doing the

tenotomy like you suggested so now I'm feeling dumb and trying to

figure out how to make it right. But the orthotics shop did say they

have those small sizes in stock. I think he'll be about a 00 or 000

in a medium width just judging from the last time I saw his little

feet. The guy that will be fitting was the same guy that used

to fit me with AFO's or the old school braces with the bars on the

shoes before I had my ankle fused so I'm feeling comfortable with

not having someone new. I think I will call them 2-3 days before his

appointment and see if they still have stock and pray that it works

out to get them a few hours after they are taken off- just enough

time to drive from Madera/Fresno to Bakersfield and maybe feed a

bottle in there too. It seems like if I soak them off at home and

drive all around California his feet will be 'free' even longer.

Sincerely,

Jodi

> > > > >

> > > > > Generally the child is fitted for the shoes prior to the

> > tenotomy.

> > > > This way they can go straight into the bar. It is the

's

> > > > that s/he is getting? If so, it takes about 2 weeks to get

> > those!

> > > > They have to custom size them. If it's the Markell's it's

> > possible

> > > > they may have a stock pile of different sizes. I would

> > definatley

> > > > call and ask you Dr. who the Orthotist is, and then call

them!

> > If

> > > > they dont have them they may be able to do a quick change of

the

> > > > Tenotomy cast and measure, take impressions of the feet for

> > fitting

> > > > in the brace, then reapply a new Tenotomy cast? Also, if

they

> > dont

> > > > have the brace right away, you may want to insist on

a 'holding

> > > > cast' until you get them! Their newly little corrected feet

can

> > > > relapse in a days time! As far as the articulating bar, my

> > daughter

> > > > has never had one. She adjusted to the 's in a day

or 2.

> > > > There is some mixed opinions here about it, but I can say

that

> > it is

> > > > not necessary.

> > > > > Christee

> > > > > 3 boys

> > > > > Lilee A-Typical (11 months)

> > > > > P/M's 10hrs

> > > > >

> > > > >

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If they have them in stock and you are just driving from the doc to

the othotics place I feel pretty confident that 's little

tootsies will be just fine in that amount of time.

allison

> > > > > >

> > > > > > Generally the child is fitted for the shoes prior to the

> > > tenotomy.

> > > > > This way they can go straight into the bar. It is the

> 's

> > > > > that s/he is getting? If so, it takes about 2 weeks to get

> > > those!

> > > > > They have to custom size them. If it's the Markell's it's

> > > possible

> > > > > they may have a stock pile of different sizes. I would

> > > definatley

> > > > > call and ask you Dr. who the Orthotist is, and then call

> them!

> > > If

> > > > > they dont have them they may be able to do a quick change of

> the

> > > > > Tenotomy cast and measure, take impressions of the feet for

> > > fitting

> > > > > in the brace, then reapply a new Tenotomy cast? Also, if

> they

> > > dont

> > > > > have the brace right away, you may want to insist on

> a 'holding

> > > > > cast' until you get them! Their newly little corrected feet

> can

> > > > > relapse in a days time! As far as the articulating bar, my

> > > daughter

> > > > > has never had one. She adjusted to the 's in a day

> or 2.

> > > > > There is some mixed opinions here about it, but I can say

> that

> > > it is

> > > > > not necessary.

> > > > > > Christee

> > > > > > 3 boys

> > > > > > Lilee A-Typical (11 months)

> > > > > > P/M's 10hrs

> > > > > >

> > > > > >

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