's check up in Iowa.

[Guest guest]

We had 's check up in Iowa yesterday (Monday morning).

Unfortunatly we were unable to see Dr. Ponseti because he was not

feeling well but were reassured that he was fine just not feeling

well enough to come into the clinic that day. We met for the first

time Dr. Morcuende and he examined 's feet. There were about 5

other doctors present from Colorado also observing.

He said that 's feet are very strong and still nice and

flexible. She has good calf muscles that are strong as well and have

devoloped nicely. She walks well on her heals as well as her toes

(she has never been able to walk well on her toes before, but perhaps

thanks in part to ballet is doing great now in that area),she has

also developed a slight arch on each foot which was nice to hear

since up until now, she had been flat footed. However, she is

intoeing like we thought. Her intoeing is not due to the metatarsal

area, it is the tendon on the top of her feet that is still showing

signs of some pulling in. So, we are now back in the shoe brace

again. She went out at 3yrs, back in two months later for another 2

years. Out again at 5 yrs. (just 3 months ago) and now we are back in

them again. We need to wear them at night and hope that her feet

respond as last time and correct the slight intoeing she has. If her

feet do not respond, then the shoes would not be enough and therefor

it would be pointless to make her continue wearing them. If the shoes

work, she will be in them for another 8-10 months bringing her to

almost 6 years old.

I had told her that I thought she might need to start wearing them

again so that she wasn't surprised at the appointment. She is so easy

going about it all again, but I can see the diappointment in her face

this time. She was so enjoying being out of the brace and now that

she is older, it seems a little harder for me to accept it but at the

same time, I don't want to see her have to go through the ATT surgery

either if we can help it. My biggest worry is that even if the brace

works, what happens 8-10 months from now when we discontiue the brace

yet again. She will be even that much older.

Dr. Morcuende was very nice, we enjoyed talking with him and were

glad to answer the doctors from Colorado's questions about also.

Before we left we were heading to American Prosthetics for a new pair

of shoes and the nurse caught us in the hallway. She said to come

back after getting the shoes, Dr. Ponseti wanted to come in and we

could see him. I asked her if she was sure he should be doing that,

he should be taking better care of himself. We came back about a half

hour later and she approached us again and said she was sorry, but he

just didn't feel well enough to come in. That man never ceases to

amaze us, always trying to put others first. Hopefully Mrs. Ponseti

told him he needed to rest! (Don't worry anyone reading this story,

we were told it was just a stomach bug):-)

Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

good review of her feet... sorry she has to go back to nights for a while

though... that is great about her calf muscle and the tip toe walking though....

don't worry... it will go by really fast i am sure...

mommy to Grace 12-03-03 BCF Dobb's Brace 16/7

shelbytru dhtru@...> wrote:

We had 's check up in Iowa yesterday (Monday morning).

Unfortunatly we were unable to see Dr. Ponseti because he was not

feeling well but were reassured that he was fine just not feeling

well enough to come into the clinic that day. We met for the first

time Dr. Morcuende and he examined 's feet. There were about 5

other doctors present from Colorado also observing.

He said that 's feet are very strong and still nice and

flexible. She has good calf muscles that are strong as well and have

devoloped nicely. She walks well on her heals as well as her toes

(she has never been able to walk well on her toes before, but perhaps

thanks in part to ballet is doing great now in that area),she has

also developed a slight arch on each foot which was nice to hear

since up until now, she had been flat footed. However, she is

intoeing like we thought. Her intoeing is not due to the metatarsal

area, it is the tendon on the top of her feet that is still showing

signs of some pulling in. So, we are now back in the shoe brace

again. She went out at 3yrs, back in two months later for another 2

years. Out again at 5 yrs. (just 3 months ago) and now we are back in

them again. We need to wear them at night and hope that her feet

respond as last time and correct the slight intoeing she has. If her

feet do not respond, then the shoes would not be enough and therefor

it would be pointless to make her continue wearing them. If the shoes

work, she will be in them for another 8-10 months bringing her to

almost 6 years old.

I had told her that I thought she might need to start wearing them

again so that she wasn't surprised at the appointment. She is so easy

going about it all again, but I can see the diappointment in her face

this time. She was so enjoying being out of the brace and now that

she is older, it seems a little harder for me to accept it but at the

same time, I don't want to see her have to go through the ATT surgery

either if we can help it. My biggest worry is that even if the brace

works, what happens 8-10 months from now when we discontiue the brace

yet again. She will be even that much older.

Dr. Morcuende was very nice, we enjoyed talking with him and were

glad to answer the doctors from Colorado's questions about also.

Before we left we were heading to American Prosthetics for a new pair

of shoes and the nurse caught us in the hallway. She said to come

back after getting the shoes, Dr. Ponseti wanted to come in and we

could see him. I asked her if she was sure he should be doing that,

he should be taking better care of himself. We came back about a half

hour later and she approached us again and said she was sorry, but he

just didn't feel well enough to come in. That man never ceases to

amaze us, always trying to put others first. Hopefully Mrs. Ponseti

told him he needed to rest! (Don't worry anyone reading this story,

we were told it was just a stomach bug):-)

Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

Holly,

I'm sorry to hear that has a " tough tendon " . At least she's

not complaining *too* much about the shoes since you warned her

about it ahead of time. I hope she'll continue to wear them for you

without too much hassle! At least she's old enough now that you can

bribe her with rewards for complying with the brace wear!

Did you get an email address yet so I can email you off-line?

Isn't Dr. Morcuende nice? I enjoy talking with him when we're in

Iowa- he's doing some really interesting research.

I hope the bracing is enough to prevent the ATTT! Please keep us

posted on how her feet look in the coming weeks. Did Dr. Morcuende

recommend any stretching? I don't know if there's anything they can

do to stretch that particular tendon or not. Did he explain to you

what the odds of needing the ATTT were after the age of 6? I would

think that the longer you can keep the foot in the correct position,

the tendon will lose some of it's " power " , especially as she gets

past the huge growth spurts and settles into the " gradual growing

pattern " when they're in grade school. Did they talk about maybe

using something like an AFO for night splinting when she's older

(beyond 6) instead of using the FAB? If it's just to prevent that

tendon from pulling her foot in, maybe a night splint on each foot

would be enough since all the other aspects of the clubfoot seem to

be fine. I'd talked to Dr. P about the potential of trying night

splints specifically for improving/maintaining 's dorsiflexion,

but he said that you run the risk of stunting a child's growth

plates by inadvertantly putting pressure on them with a night splint-

so you really have to be careful.

Hugs to you- I know how disappointed you must be!!!!

& (3-16-00, left clubfoot)

[Guest guest]

Dear Holly,

Thanks for updating us on 's appointment.

I'm so glad that Dr. Morcuende thought that, overall, was doing

well, with her calf strength and mobility, arch development, etc..

I'm so sorry, though, that your suspicions about the intoeing were

confirmed and that she has to go back in the shoes at night. I'm sure

that even if you expected it, it's still a little discouraging. What

a sweet girl she is to be such a trooper about it. You were wise to

prepare her; it helps so much when they are old enough to understand.

I like Dr. Morcuende too.. he always has taken a lot of time with

us.. he and Dr. Ponseti seem to be very close. I'm sorry to hear that

Dr. Ponseti was under the weather.

Claire is in size 8s too.. so far we haven't needed a larger size. I

wish I could tell you what to do about the blister spots.. I'd

imagine it's just from wearing new shoes, and hope that they'll break

in soon.. have you tried softening them up just by working them with

your hands? I wish I had more ideas.

Please keep us posted.. We'll be pulling for success with the

shoes.. I know you are worried about what will happen whenever you

stop again, but I know that the relapse risk keeps decreasing, so

perhaps by that time, the window of chance of the feet turning back

in will have closed. It's just getting through this time.. Hang in

there..

When will you go back for another appointment?

Fondly,

and Claire

[Guest guest]

Hi ,

Well, Dr. Morcuende said that there is really no age that a child

could not be treated with the ATTT surgery, but he says that the

younger the child, the easier it is on the child. Of course we would

not want to do the ATTT if it was not truly needed right now just

because she is younger now than in one year but it is something that

we know will be available if needed in the future. (Hopefully we

won't need to.) has had 2 nights in the brace and is doing just

fine. The first night was " interesting " :-) She called me the first

time because she had pulled one foot out and needed me to put it back

on. She called me the second time because she pulled the one shoe off

again. She called me the third time because she fell off the side of

the bed and when I went in to see her she was hanging over the edge,

feet on the floor and fast asleep already with her head resting on

the edge of her bed. I was so tired from the fast trip to and from

Iowa that after I put her back to bed for the last time it all hit me

that we were still not out of the woods and the tears started to

flow! I think I just needed that little " vent " to get started again

and push on. So, last night was great and although those two blisters

seem because of pressure from the new shoes she really is doing just

fine. I sometimes think it really is harder on the parents than the

kids, she just looks at me and smiles like, what's your deal mom?

It was funny, at the appointment I had both my girls up on the bed

waiting for the doctor and they were coloring in coloring books. When

Dr. Morcuende came in he started talking to and she was a

little too into the coloring and practically ignored him until I

said, Ok, we'll color later.

Dr. Morcuende asked if I did any stretching and I told him yes, I had

for years on and off. I don't know if it was helping or not but I

just felt like anything helped. He said that is wonderful and showed

me the way to do it and I apparently have been doing the right thing.

He also would see how far she could flex by herself by putting his

finger over her feet in different places and tell her to try and

touch his fingers by stretching her toes in the direction of his

finger. It was great to see her be able to touch his finger in every

direction that he tried. Next he said, OK, I'm going to push on your

foot and you try to push back as hard as you can. It was funny, he

was pushing so hard his finger was turning white and still

could hold him back. That's when he said her feet are very strong.

Regarding the ATTT surgery after 6 years old, he said that there is a

less than 5% chance. Relapse after 5 years old is (just so everyone

knows)very rare still. It can happen, but it is rare. is

showing some intoeing but neither the doctors or us can say if her

feet would have just stayed where they were and not more anymore or

continue to move. She brace is really to prevent furthur movement. As

for the use of the AFO, I have been pondering the question of it in

my mind also. I wasn't sure if the fact that the two feet are not

connected together would be of any benefit or not but I think as time

goes by I will ask if it might help in 's case. I know she'd

love not having to sleep with her feet up in the air if she didn't

have to anymore (she's a side sleeper!)

One more thing...........Dr. Morcuende did say that HAS to stop

sitting with one foot off to the side like she does all the time.

(Kind of curved behind her) It's a version of " W " sittin but only

with one leg. He said that up to 70% on intoeing in some children can

be because of sitting like this and it actually rotates the hip and

causes intoeing.

, I'm so sorry I haven't found a post, did you have your

baby???? I've been so preoccupied, but I have thought of you

often!!!! How are you doing?

Holly and

> Holly,

> I'm sorry to hear that has a " tough tendon " . At least she's

> not complaining *too* much about the shoes since you warned her

> about it ahead of time. I hope she'll continue to wear them for

you

> without too much hassle! At least she's old enough now that you

can

> bribe her with rewards for complying with the brace wear!

> Did you get an email address yet so I can email you off-line?

> Isn't Dr. Morcuende nice? I enjoy talking with him when we're in

> Iowa- he's doing some really interesting research.

> I hope the bracing is enough to prevent the ATTT! Please keep us

> posted on how her feet look in the coming weeks. Did Dr. Morcuende

> recommend any stretching? I don't know if there's anything they

can

> do to stretch that particular tendon or not. Did he explain to you

> what the odds of needing the ATTT were after the age of 6? I would

> think that the longer you can keep the foot in the correct

position,

> the tendon will lose some of it's " power " , especially as she gets

> past the huge growth spurts and settles into the " gradual growing

> pattern " when they're in grade school. Did they talk about maybe

> using something like an AFO for night splinting when she's older

> (beyond 6) instead of using the FAB? If it's just to prevent that

> tendon from pulling her foot in, maybe a night splint on each foot

> would be enough since all the other aspects of the clubfoot seem to

> be fine. I'd talked to Dr. P about the potential of trying night

> splints specifically for improving/maintaining 's

dorsiflexion,

> but he said that you run the risk of stunting a child's growth

> plates by inadvertantly putting pressure on them with a night

splint-

> so you really have to be careful.

> Hugs to you- I know how disappointed you must be!!!!

> & (3-16-00, left clubfoot)

[Guest guest]

Holly,

We are in a similar situation. Becky is 3 1/2 and has that " tough

tendon " also. Every other aspect of her foot is great.... it is

just that tendon! LOL Dr. Ponseti and Dr. Morocunde both agreed

that she will need the ATTT and we will be doing that in September.

She is still wearing her shoes for about 15hrs/day and is really

starting to dislike it.... asks me all the time when she can stop

wearing it and if she really " has " to. I am dreading the surgery as

she is one very active little girl and it is going to be hard to

keep her down.

Anyways, good luck and I hope that the bracing works for and

she is able to avoid the ATTT!

(((((((HUGS))))))))

and Becky

> We had 's check up in Iowa yesterday (Monday morning).

> Unfortunatly we were unable to see Dr. Ponseti because he was not

> feeling well but were reassured that he was fine just not feeling

> well enough to come into the clinic that day. We met for the first

> time Dr. Morcuende and he examined 's feet. There were about

5

> other doctors present from Colorado also observing.

> He said that 's feet are very strong and still nice and

> flexible. She has good calf muscles that are strong as well and

have

> devoloped nicely. She walks well on her heals as well as her toes

> (she has never been able to walk well on her toes before, but

perhaps

> thanks in part to ballet is doing great now in that area),she has

> also developed a slight arch on each foot which was nice to hear

> since up until now, she had been flat footed. However, she is

> intoeing like we thought. Her intoeing is not due to the

metatarsal

> area, it is the tendon on the top of her feet that is still

showing

> signs of some pulling in. So, we are now back in the shoe brace

> again. She went out at 3yrs, back in two months later for another

2

> years. Out again at 5 yrs. (just 3 months ago) and now we are back

in

> them again. We need to wear them at night and hope that her feet

> respond as last time and correct the slight intoeing she has. If

her

> feet do not respond, then the shoes would not be enough and

therefor

> it would be pointless to make her continue wearing them. If the

shoes

> work, she will be in them for another 8-10 months bringing her to

> almost 6 years old.

> I had told her that I thought she might need to start wearing them

> again so that she wasn't surprised at the appointment. She is so

easy

> going about it all again, but I can see the diappointment in her

face

> this time. She was so enjoying being out of the brace and now that

> she is older, it seems a little harder for me to accept it but at

the

> same time, I don't want to see her have to go through the ATT

surgery

> either if we can help it. My biggest worry is that even if the

brace

> works, what happens 8-10 months from now when we discontiue the

brace

> yet again. She will be even that much older.

> Dr. Morcuende was very nice, we enjoyed talking with him and were

> glad to answer the doctors from Colorado's questions about

also.

> Before we left we were heading to American Prosthetics for a new

pair

> of shoes and the nurse caught us in the hallway. She said to come

> back after getting the shoes, Dr. Ponseti wanted to come in and we

> could see him. I asked her if she was sure he should be doing

that,

> he should be taking better care of himself. We came back about a

half

> hour later and she approached us again and said she was sorry, but

he

> just didn't feel well enough to come in. That man never ceases to

> amaze us, always trying to put others first. Hopefully Mrs.

Ponseti

> told him he needed to rest! (Don't worry anyone reading this

story,

> we were told it was just a stomach bug):-)

>

> Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

,

I'm not sure when we will go back again for another check up. If all

goes well with the shoes Dr. Morcuende wants us to keep the brace on

another 8-10 months and then around Christmas time release her again

and see what happens. Or we could keep her in them until her 6th

birthday and then release her and see what happens. It the brace does

nothing for us now (which at least I think it would keep her feet how

they are now) then he said there would be no point in wearing it and

we might have to look at the ATTT as early as the fall of this year.

Her feet look great thought right now and the shoes aren't bothering

her at all so I imagine we are going to be OK for now. I am also

going to send Dr. Ponseti a video I have been making for the last 2

months of her feet and add on sections now that she is wearing the

brace along with some pictures I've taken so he can keep up on her

progress and also see first hand how she has gradually changed a bit.

Hopefully all we will see now is a gradual change back to completely

straight now that she is back in the brace. It's going to be hard to

tell because her feet are only just slightly intoeing, nothing at

this point I would ever want her to have surgery for. I just don't

want them to keep going furthur inward, so I am grateful for the

larger shoes on the brace! :-)

We'll see!

Holly and

> Dear Holly,

>

> Thanks for updating us on 's appointment.

> I'm so glad that Dr. Morcuende thought that, overall, was

doing

> well, with her calf strength and mobility, arch development, etc..

> I'm so sorry, though, that your suspicions about the intoeing were

> confirmed and that she has to go back in the shoes at night. I'm

sure

> that even if you expected it, it's still a little discouraging.

What

> a sweet girl she is to be such a trooper about it. You were wise to

> prepare her; it helps so much when they are old enough to

understand.

>

> I like Dr. Morcuende too.. he always has taken a lot of time with

> us.. he and Dr. Ponseti seem to be very close. I'm sorry to hear

that

> Dr. Ponseti was under the weather.

>

> Claire is in size 8s too.. so far we haven't needed a larger size.

I

> wish I could tell you what to do about the blister spots.. I'd

> imagine it's just from wearing new shoes, and hope that they'll

break

> in soon.. have you tried softening them up just by working them

with

> your hands? I wish I had more ideas.

>

> Please keep us posted.. We'll be pulling for success with the

> shoes.. I know you are worried about what will happen whenever you

> stop again, but I know that the relapse risk keeps decreasing, so

> perhaps by that time, the window of chance of the feet turning back

> in will have closed. It's just getting through this time.. Hang in

> there..

>

> When will you go back for another appointment?

>

> Fondly,

> and Claire

[Guest guest]

Holly-

Thank you for the update on . I'm sorry to hear she started

intoeing again. Is there any way for you to post a picture of her

intoeing. The reason I ask is my son has always intoed on his left

foot (CF) and still does at 3yr 2 months. I think that intoe is the

correct term. His toes seems to curve inward a little. I first sent

pictures of it to Dr. P when my son was 4 months old because I was

concerned and he said that his foot is well corrected and that is

common with CF children. I've since asked Dr. Colburn about it at

visits and he said it is nothing to be concerned about. It is

exactly the same today as it was when he was 4 months old. It does

not cause tripping or anything but is sometimes more noticable than

other times. I'm just curious as to why 's intoeing is a

concern and my son's foot isn't.

> We had 's check up in Iowa yesterday (Monday morning).

> Unfortunatly we were unable to see Dr. Ponseti because he was not

> feeling well but were reassured that he was fine just not feeling

> well enough to come into the clinic that day. We met for the first

> time Dr. Morcuende and he examined 's feet. There were about

5

> other doctors present from Colorado also observing.

> He said that 's feet are very strong and still nice and

> flexible. She has good calf muscles that are strong as well and

have

> devoloped nicely. She walks well on her heals as well as her toes

> (she has never been able to walk well on her toes before, but

perhaps

> thanks in part to ballet is doing great now in that area),she has

> also developed a slight arch on each foot which was nice to hear

> since up until now, she had been flat footed. However, she is

> intoeing like we thought. Her intoeing is not due to the

metatarsal

> area, it is the tendon on the top of her feet that is still

showing

> signs of some pulling in. So, we are now back in the shoe brace

> again. She went out at 3yrs, back in two months later for another

2

> years. Out again at 5 yrs. (just 3 months ago) and now we are back

in

> them again. We need to wear them at night and hope that her feet

> respond as last time and correct the slight intoeing she has. If

her

> feet do not respond, then the shoes would not be enough and

therefor

> it would be pointless to make her continue wearing them. If the

shoes

> work, she will be in them for another 8-10 months bringing her to

> almost 6 years old.

> I had told her that I thought she might need to start wearing them

> again so that she wasn't surprised at the appointment. She is so

easy

> going about it all again, but I can see the diappointment in her

face

> this time. She was so enjoying being out of the brace and now that

> she is older, it seems a little harder for me to accept it but at

the

> same time, I don't want to see her have to go through the ATT

surgery

> either if we can help it. My biggest worry is that even if the

brace

> works, what happens 8-10 months from now when we discontiue the

brace

> yet again. She will be even that much older.

> Dr. Morcuende was very nice, we enjoyed talking with him and were

> glad to answer the doctors from Colorado's questions about

also.

> Before we left we were heading to American Prosthetics for a new

pair

> of shoes and the nurse caught us in the hallway. She said to come

> back after getting the shoes, Dr. Ponseti wanted to come in and we

> could see him. I asked her if she was sure he should be doing

that,

> he should be taking better care of himself. We came back about a

half

> hour later and she approached us again and said she was sorry, but

he

> just didn't feel well enough to come in. That man never ceases to

> amaze us, always trying to put others first. Hopefully Mrs.

Ponseti

> told him he needed to rest! (Don't worry anyone reading this

story,

> we were told it was just a stomach bug):-)

>

> Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

- We were told that after Jake had his ATTT surgery last spring,

just to keep him from walking on his foot or putting any weight on it.

If the child puts weight on the surgical foot, it can make the tendon

pull out a little and not heal correctly. Jake was up crawling around 3

days after surgery...a few weeks afterwards, he did try to walk on his

cast leg (which looks pretty funny since the cast is bent 90 degrees at

the knee). We did try and discourage him from doing that but he's very

stubborn and wouldn't listen all the time.

Since it's looking like he'll need another ATTT surgery (because the

tendon apparently *did* pull out a little), we will quiz the drs about

mobility issues more- I'm not sure if crawling is contraindicated too?

Maybe someone here knows... And I'm sure Jake won't want to have the

surgery *again* so I bet he'll listen to us more this time around,

especially since he's older now.

When does Becky have her next appt? Jake goes back on June 29th...maybe

we can meet up.

Kassia

3/22/01 (Lt clubfoot, ATTT surgery April 2004)

and 11/22/02

[Guest guest]

,

I've been wanting to post some pictures but finally took my film in

(I don't have a digital camara) and should be getting them back

tomorrow. Hopefully I have a few good ones in there and I'll post

them as soon as I can. Some people on the group are probably going to

think, Oh my god, what is this girl talking about, because it is

really only visible when she walks. When she stands still, you really

have look to see the intoeing. Dr. Morcuende had examined her when

she was sitting at first and after he finished he asked what the

concern was because she looked great. It wasn't until she walked that

he saw her intoeing. It sounds like your son's is because of just the

toe section of his foot (much like Rose's mom (Joy) had posted

pictures of) although I think Rose's was also some forefoot intoeing.

Did you catch that post of hers?(Joy posted some great pictures of

Rose about a week or two ago for me on the group) Rose did not need

furthur treatment for hers according to Dr. Ponseti also because it

was not involving the tendon on the top of her foot. I hope I'm

making some sense here.

's feet, on the other hand, need to stop the tendency to pull

slightly in once her shoes brace is removed for a few months in order

for her to avoid the ATTT surgery. Hopefully with a good several more

months of this and an even more advanced age, this will stop.

Is your son still wearing the brace? If your sons feet have always

looked the same even while in the brace and haven't gotten any worse

and Dr. Ponseti said that it is normal, I probably wouldn't worry.

's feet looked the same for years, and then all of a sudden

looked different to me, that's when I knew something was going on

again.

Hope this helps,

Holly and

> > We had 's check up in Iowa yesterday (Monday morning).

> > Unfortunatly we were unable to see Dr. Ponseti because he was not

> > feeling well but were reassured that he was fine just not feeling

> > well enough to come into the clinic that day. We met for the

first

> > time Dr. Morcuende and he examined 's feet. There were about

> 5

> > other doctors present from Colorado also observing.

> > He said that 's feet are very strong and still nice and

> > flexible. She has good calf muscles that are strong as well and

> have

> > devoloped nicely. She walks well on her heals as well as her toes

> > (she has never been able to walk well on her toes before, but

> perhaps

> > thanks in part to ballet is doing great now in that area),she has

> > also developed a slight arch on each foot which was nice to hear

> > since up until now, she had been flat footed. However, she is

> > intoeing like we thought. Her intoeing is not due to the

> metatarsal

> > area, it is the tendon on the top of her feet that is still

> showing

> > signs of some pulling in. So, we are now back in the shoe brace

> > again. She went out at 3yrs, back in two months later for another

> 2

> > years. Out again at 5 yrs. (just 3 months ago) and now we are

back

> in

> > them again. We need to wear them at night and hope that her feet

> > respond as last time and correct the slight intoeing she has. If

> her

> > feet do not respond, then the shoes would not be enough and

> therefor

> > it would be pointless to make her continue wearing them. If the

> shoes

> > work, she will be in them for another 8-10 months bringing her to

> > almost 6 years old.

> > I had told her that I thought she might need to start wearing

them

> > again so that she wasn't surprised at the appointment. She is so

> easy

> > going about it all again, but I can see the diappointment in her

> face

> > this time. She was so enjoying being out of the brace and now

that

> > she is older, it seems a little harder for me to accept it but at

> the

> > same time, I don't want to see her have to go through the ATT

> surgery

> > either if we can help it. My biggest worry is that even if the

> brace

> > works, what happens 8-10 months from now when we discontiue the

> brace

> > yet again. She will be even that much older.

> > Dr. Morcuende was very nice, we enjoyed talking with him and were

> > glad to answer the doctors from Colorado's questions about

> also.

> > Before we left we were heading to American Prosthetics for a new

> pair

> > of shoes and the nurse caught us in the hallway. She said to come

> > back after getting the shoes, Dr. Ponseti wanted to come in and

we

> > could see him. I asked her if she was sure he should be doing

> that,

> > he should be taking better care of himself. We came back about a

> half

> > hour later and she approached us again and said she was sorry,

but

> he

> > just didn't feel well enough to come in. That man never ceases to

> > amaze us, always trying to put others first. Hopefully Mrs.

> Ponseti

> > told him he needed to rest! (Don't worry anyone reading this

> story,

> > we were told it was just a stomach bug):-)

> >

> > Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

,

I know what you mean about an active little girl, is the same

and I can't even imagine her in two full leg casts at 5 1/2 years

old! When he told me it was up the thigh I said, you mean it's not

just up to the knee????? He just looked at me and made a face like,

unfortunately not and shook his head no.

Why does Becky need the ATTT? You mentioned she is still in the brace

15 hours a day, has she been released from the shoe brace before and

she started to relapse? Or is she intoeing regardless of wearing the

brace?

has been at 10 hours a night, sometimes 9, for the last 3 years

or so and her feet remained perfect. It isn't until we remove the

brace for a few months at a time that we start to notice movement.

Once they do Becky's ATTT, is she out of the woods completely then

and doesn't have to worry about furthur relapses? Dr. Morcuende said

that he hasn't had any patient come back after the ATTT for relapses

so far.

Holly and

> > We had 's check up in Iowa yesterday (Monday morning).

> > Unfortunatly we were unable to see Dr. Ponseti because he was not

> > feeling well but were reassured that he was fine just not feeling

> > well enough to come into the clinic that day. We met for the

first

> > time Dr. Morcuende and he examined 's feet. There were about

> 5

> > other doctors present from Colorado also observing.

> > He said that 's feet are very strong and still nice and

> > flexible. She has good calf muscles that are strong as well and

> have

> > devoloped nicely. She walks well on her heals as well as her toes

> > (she has never been able to walk well on her toes before, but

> perhaps

> > thanks in part to ballet is doing great now in that area),she has

> > also developed a slight arch on each foot which was nice to hear

> > since up until now, she had been flat footed. However, she is

> > intoeing like we thought. Her intoeing is not due to the

> metatarsal

> > area, it is the tendon on the top of her feet that is still

> showing

> > signs of some pulling in. So, we are now back in the shoe brace

> > again. She went out at 3yrs, back in two months later for another

> 2

> > years. Out again at 5 yrs. (just 3 months ago) and now we are

back

> in

> > them again. We need to wear them at night and hope that her feet

> > respond as last time and correct the slight intoeing she has. If

> her

> > feet do not respond, then the shoes would not be enough and

> therefor

> > it would be pointless to make her continue wearing them. If the

> shoes

> > work, she will be in them for another 8-10 months bringing her to

> > almost 6 years old.

> > I had told her that I thought she might need to start wearing

them

> > again so that she wasn't surprised at the appointment. She is so

> easy

> > going about it all again, but I can see the diappointment in her

> face

> > this time. She was so enjoying being out of the brace and now

that

> > she is older, it seems a little harder for me to accept it but at

> the

> > same time, I don't want to see her have to go through the ATT

> surgery

> > either if we can help it. My biggest worry is that even if the

> brace

> > works, what happens 8-10 months from now when we discontiue the

> brace

> > yet again. She will be even that much older.

> > Dr. Morcuende was very nice, we enjoyed talking with him and were

> > glad to answer the doctors from Colorado's questions about

> also.

> > Before we left we were heading to American Prosthetics for a new

> pair

> > of shoes and the nurse caught us in the hallway. She said to come

> > back after getting the shoes, Dr. Ponseti wanted to come in and

we

> > could see him. I asked her if she was sure he should be doing

> that,

> > he should be taking better care of himself. We came back about a

> half

> > hour later and she approached us again and said she was sorry,

but

> he

> > just didn't feel well enough to come in. That man never ceases to

> > amaze us, always trying to put others first. Hopefully Mrs.

> Ponseti

> > told him he needed to rest! (Don't worry anyone reading this

> story,

> > we were told it was just a stomach bug):-)

> >

> > Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

Holly-

My son's foot it opposite to 's. When standing the intoeing is

noticeable when walking it is not. This is why he doesn't trip over

them or anything because it is only when he stands. We compare

pictures of his feet we took at 13 weeks in a standing postion (we

were holding him and having him bear weight down) and pictures now

(at age 3) and it is exactly the same. There is no change there. I

would love to see 's feet posted if you get a chance. I missed

the ones of Rose. Do you know if there is a way to go back and look

at them?

> > > We had 's check up in Iowa yesterday (Monday morning).

> > > Unfortunatly we were unable to see Dr. Ponseti because he was

not

> > > feeling well but were reassured that he was fine just not

feeling

> > > well enough to come into the clinic that day. We met for the

> first

> > > time Dr. Morcuende and he examined 's feet. There were

about

> > 5

> > > other doctors present from Colorado also observing.

> > > He said that 's feet are very strong and still nice and

> > > flexible. She has good calf muscles that are strong as well

and

> > have

> > > devoloped nicely. She walks well on her heals as well as her

toes

> > > (she has never been able to walk well on her toes before, but

> > perhaps

> > > thanks in part to ballet is doing great now in that area),she

has

> > > also developed a slight arch on each foot which was nice to

hear

> > > since up until now, she had been flat footed. However, she is

> > > intoeing like we thought. Her intoeing is not due to the

> > metatarsal

> > > area, it is the tendon on the top of her feet that is still

> > showing

> > > signs of some pulling in. So, we are now back in the shoe

brace

> > > again. She went out at 3yrs, back in two months later for

another

> > 2

> > > years. Out again at 5 yrs. (just 3 months ago) and now we are

> back

> > in

> > > them again. We need to wear them at night and hope that her

feet

> > > respond as last time and correct the slight intoeing she has.

If

> > her

> > > feet do not respond, then the shoes would not be enough and

> > therefor

> > > it would be pointless to make her continue wearing them. If

the

> > shoes

> > > work, she will be in them for another 8-10 months bringing her

to

> > > almost 6 years old.

> > > I had told her that I thought she might need to start wearing

> them

> > > again so that she wasn't surprised at the appointment. She is

so

> > easy

> > > going about it all again, but I can see the diappointment in

her

> > face

> > > this time. She was so enjoying being out of the brace and now

> that

> > > she is older, it seems a little harder for me to accept it but

at

> > the

> > > same time, I don't want to see her have to go through the ATT

> > surgery

> > > either if we can help it. My biggest worry is that even if the

> > brace

> > > works, what happens 8-10 months from now when we discontiue

the

> > brace

> > > yet again. She will be even that much older.

> > > Dr. Morcuende was very nice, we enjoyed talking with him and

were

> > > glad to answer the doctors from Colorado's questions about

> > also.

> > > Before we left we were heading to American Prosthetics for a

new

> > pair

> > > of shoes and the nurse caught us in the hallway. She said to

come

> > > back after getting the shoes, Dr. Ponseti wanted to come in

and

> we

> > > could see him. I asked her if she was sure he should be doing

> > that,

> > > he should be taking better care of himself. We came back about

a

> > half

> > > hour later and she approached us again and said she was sorry,

> but

> > he

> > > just didn't feel well enough to come in. That man never ceases

to

> > > amaze us, always trying to put others first. Hopefully Mrs.

> > Ponseti

> > > told him he needed to rest! (Don't worry anyone reading this

> > story,

> > > we were told it was just a stomach bug):-)

> > >

> > > Holly and (born: 2-11-00 mod-severe bilateral)

[Guest guest]

Holly & - I can tell you that the risk of " relapse " is minimal

after the ATTT surgery. However, there is always the possibility that

the surgery may not have fully corrected the foot, or that the tendon

didn't heal correctly. That's what happened with Jake- apparently the

tendon pulled out slightly, so now it doesn't lift his foot up as it

should. It is quite noticeable when he's walking/running. Dr Dietz

(who works with Dr Ponseti & Dr Morcuende) is recommending that he have

a 2nd ATTT surgery done, but this time instead of just a suture to hold

the tendon in place, there will be a screw too. Dr Dietz told us that

in 20 yrs of practice, he's had only 6 patients who needed a 2nd ATTT

surgery. I guess Jake makes #7. We have another check-up with Dr Dietz

at the end of June, when we will decide for sure if Jake will have

surgery. In the meantime we are doing stretches and strengthening

exercises (remember, Jake had a fractured femur Nov 2004 and was in a

spica cast for 8 1/2 wks- so all the muscles in his left leg/foot are

weak now) in the hopes that he won't need to have a repeat ATTT, but

we're pretty much sure now that he will need the surgery. The exercises

we're doing are helping some but not enough imo.

hth,

Kassia

3/22/01 (Lt clubfoot, ATTT surgery April 2004)

and 11/22/02

[Guest guest]

Kassia-

Sorry it has taken a while for me to get back to you things have

been pretty busy.

We are actually in the process of moving to Iowa LOL All of this

going back and forth has really taken a toll on our family. My

inlaws live down in Burlington, which is only about 3 hours from

Iowa City.

Not sure when our next appt will be as we are going to be changing

insurance.... but we will be moving in the beginning of July and

hopefully will be set to have the ATTT done in September.

Oh boy is it going to be a challange keeping Becky down though with

BOTH legs being in casts!!!! akkkk!!! She is one VERY ACTIVE

little 3 year old LOL Hopefully after running around all summer

she will take a break for me in the fall!!! hahaha

Yeah, that would be cool if we could meet up sometime!

and Becky 3 1/2 bilateral clubfoot and upcoming ATTT

> - We were told that after Jake had his ATTT surgery last

spring,

> just to keep him from walking on his foot or putting any weight on

it.

> If the child puts weight on the surgical foot, it can make the

tendon

> pull out a little and not heal correctly. Jake was up crawling

around 3

> days after surgery...a few weeks afterwards, he did try to walk on

his

> cast leg (which looks pretty funny since the cast is bent 90

degrees at

> the knee). We did try and discourage him from doing that but he's

ve

> stubborn and wouldn't listen all the time.

>

> Since it's looking like he'll need another ATTT surgery (because

the

> tendon apparently *did* pull out a little), we will quiz the drs

about

> mobility issues more- I'm not sure if crawling is contraindicated

too?

> Maybe someone here knows... And I'm sure Jake won't want to have

the

> surgery *again* so I bet he'll listen to us more this time around,

> especially since he's older now.

>

> When does Becky have her next appt? Jake goes back on June

29th...maybe

> we can meet up.

>

> Kassia

> 3/22/01 (Lt clubfoot, ATTT surgery April 2004)

> and 11/22/02

[Guest guest]

Holly,

I wouldn't call what Becky has " intoeing " persay.... it is

like she walks more on the ouside edge of her feet, well maybe with

a very slight intoeing.... They said at her last appointment that

her feet look great except for that one tendon that is pulling at

her feet to make her walk on the outside edge. Alot of pepole

think that I am crazy and can't even notice that there is anything

wrong, but when she runs she is soooo unsteady I am really scared

that one of these days she is going to trip over her feet and really

get hurt.

Beck has never been released from the shoes. My husband and I have

been very dilligent in making sure she is wearing it for the

required number of hours. But Dr. Ponseti did say if she stopped

wearing the brace her feet would get worse with out a doubt. So

even with all her protesting lately she still has to wear it.

From what I can gather about the ATTT is that they don't need the

brace after it and there is a very small percentage of relapse after

that point!

I hope that helps. Fingers crossed for that she is able to

avoid this!

and Becky

> ,

> I know what you mean about an active little girl, is the

same

> and I can't even imagine her in two full leg casts at 5 1/2 years

> old! When he told me it was up the thigh I said, you mean it's not

> just up to the knee????? He just looked at me and made a face

like,

> unfortunately not and shook his head no.

> Why does Becky need the ATTT? You mentioned she is still in the

brace

> 15 hours a day, has she been released from the shoe brace before

and

> she started to relapse? Or is she intoeing regardless of wearing

the

> brace?

> has been at 10 hours a night, sometimes 9, for the last 3

years

> or so and her feet remained perfect. It isn't until we remove the

> brace for a few months at a time that we start to notice movement.

> Once they do Becky's ATTT, is she out of the woods completely then

> and doesn't have to worry about furthur relapses? Dr. Morcuende

said

> that he hasn't had any patient come back after the ATTT for

relapses

> so far.

>

> Holly and

>

[Guest guest]

I don't remember who it was anymore...but when Jake had his first ATTT,

I was freaking out (of course) and asking tons of questions. There was

a mom here who said her son had the ATTT done on both feet, and he was

up walking around on his casts!! I couldn't believe it...with both

knees bent at a 90 degree angle that had to look pretty funny.

HOWEVER...Dr Dietz told us that we were to make sure that Jake didn't

try to walk in his cast because any weight bearing could cause the

tendon to pull out a little. You can bet that this time around I'll be

asking if crawling is included in that!!

Kassia

3/22/01 (Lt clubfoot, ATTT surgery April 2004)

and 11/22/02

[Guest guest]

,

I understand now. Yes, I agree too, if Becky is loosing any

correction while in the shoes/brace she definitely would have bigger

problems once the brace was discontinued without the ATTT. Did I read

correctly that she was A Typical clubfoot? I finally got the term

down pat these days. Dr. Ponseti used to refer to it as " true

Clubfoot " (meaning not of a possitional nature only) and my daughter

has in the past been under that term before. While we were in Iowa

last week however, Dr. Morcuende said that she leans in that

direction because she had the very short, round, puffy feet, more

difficult to correct (we had 7 Ponseti casts total) but that she has

very good flexibility, so he does not really consider her feet A

typical at this age. At one point now that I remember she was thought

to have " loose ligaments " because her over correction was almost

extreme and so one of her shoes was adjusted inward just a bit. I

always found it amazing that a child could have clubfoot but still

also have loose ligaments. These crazy feet!!! I realize once again

what an exact science clubfoot correction really has to be when we go

back for our visits to Iowa.

Holly and

> > ,

> > I know what you mean about an active little girl, is the

> same

> > and I can't even imagine her in two full leg casts at 5 1/2 years

> > old! When he told me it was up the thigh I said, you mean it's

not

> > just up to the knee????? He just looked at me and made a face

> like,

> > unfortunately not and shook his head no.

> > Why does Becky need the ATTT? You mentioned she is still in the

> brace

> > 15 hours a day, has she been released from the shoe brace before

> and

> > she started to relapse? Or is she intoeing regardless of wearing

> the

> > brace?

> > has been at 10 hours a night, sometimes 9, for the last 3

> years

> > or so and her feet remained perfect. It isn't until we remove the

> > brace for a few months at a time that we start to notice movement.

> > Once they do Becky's ATTT, is she out of the woods completely

then

> > and doesn't have to worry about furthur relapses? Dr. Morcuende

> said

> > that he hasn't had any patient come back after the ATTT for

> relapses

> > so far.

> >

> > Holly and

> >

[Guest guest]

My situation is VERY similar...

An active 5 1/2 yr old son whose always had a slightly tight heal

cord and less flexibility on his right foot. He's still wearing the

night brace (without complaint so far) for 2 years more than we had

anticipated.

NOW...

After our May visit to see Dr. Ponseti, he has concluded that

because he is entering school this fall, he should have an ATT and

full casts for 5-6 weeks this summer!

We knew this was always a possibility, but now looking at having to

go through with it makes me a bit uneasy. I'm hoping we can at least

allow him time to play t-ball for a few weeks prior to having it

done. Wondering also if I'll need to rent a wheel chair for him or

what's involved.

Any other parents gone through this type of experience? Please let

me (and others) know what we might expect and what your situation

was like.

mother of Graham, 5 1/2 yrs