Re: Update and more questions about my 2 yr old

[Guest guest]

,

I unfortunately don't have a lot of advice for you on the casting

part. I can't imagine my son (nearly 20 months) in a cast; although

of course we would deal if we had to, just like I'm sure you all will

do, muddling through somehow. One thing I can say from my own

experience, having a clubfoot myself, is that when I had my casts on

when I was little my mom and I read A LOT!

I mainly wanted to just say 'well done' on listening to your mother's

instinct. Not to say that Dr. Noonan was wrong, but just that it is

pretty much next to impossible to go wrong by consulting w/ Dr. P.

And now, you will have the peace of mind that comes from taking your

child to the very best.

As far as your question about the brace, it is difficult to say,

because Dr. P has been prescribing different brace wear routines for

different children lately. My guess would be that you would not need

to go back to fulltime wear but that he might have you start out with

some increase in hours from what you have been doing. But again,

this is just a guess.

Hope this helps a little bit, : )

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

>

> Hi-

>

> I posted a couple months ago about my daughter Mia (2 yrs old,

> unilateral left clubfoot) and received some really helpful replies

> about what we saw as a possible relapse. Kori especially was so

> helpful- and based on that, we decided to contact Dr. Ponseti after

> we saw Dr. Noonan here in Wisconsin again.

>

> What we found out, was that what we thought we were seeing (her foot

> pointing inward) wasn't really what we should have been looking for-

> we should have been looking for her heel to always touch down when

> she walks. When we took her to see Dr. Noonan to discuss it, that

> was what he said he was looking for. And he seemed more concerned

> with what we were seeing than any observations he was making. He

> basically said that based on our concerns, he recommended a tendon

> lengthoning surgery under anesthesia at the end of this month,

> followed by about six weeks of casting and then she would wear the

> shoes only at night. He was going to make a mold of her foot so that

> we could get the shoe because we told him that was what we

> wanted to try this time (since we had SO much trouble keeping the

> markell shoes on her feet when she was a baby).

>

> SO- initially we made the appointment, but I didn't feel right about

> it. I contacted Dr. Ponseti and showed him some pictures. When he

> first wrote me back, he said that it looked like she was

> dorsiflexing to a 5, which is usually sufficient. And that he did

> NOT recommend a tendon lengthoning like Dr. Noonan wanted to do- he

> said he could do a tenotomy on her with a LOCAL if her foot was

> indeed reverting back.

>

> Then yesterday I talked to his secretary about the consultation

> appointment I made for Dr. P. to see her. After we got off the

> phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> pictures again and decided that he will cast her at what was to be

> our consultation appointment. She'll be recasted a week later, then

> a week after that she'll have a tenotomy. Then she'll wear the cast

> for 3 weeks after that.

>

> I'm not sure what made him sure that this should be the course of

> action, but we'll definitely go with what he says.

>

> Is there anyone on the board who went through this procedure with a

> 2-yr old (or older?) Do you have any advice for us? We are SO

> nervous about how our unbelievably active 2 yr old will deal with a

> cast right when summer finally got here and she can finally go

> outside and play But I do know this is all about the big picture

> and not these few weeks. We can get through it, but I'm wondering if

> anyone can give us advice for making it easier?? We are just really

> nervous.

>

> Also: do you think they will let me be in the room with her when she

> has the tenotomy done? Because she'll be awake, I can't imagine

> leaving her alone for that. I don't think I can do it.

>

> And then the shoes: unlike Dr. Noonan who said she would wear the

> shoes only at night " because walking all day stretches out the

> tendon enough as it is " , is Dr. P. going to have her wear the

> shoes all the time?

>

> I know we'll find all of this out from him when we go to Iowa, but I

> thought maybe some of you might be able to make this more clear for

> me, and give us any advice you had...............sorry to write such

> a book.....

>

> Thanks in advance...........

>

>

>

[Guest guest]

My infant son had the tenotomy performed when he was a couple of months old.

The actual procedure is considered surgery, so I doubt that you will be allowed

in the room. The good news is that it only takes five minutes - maybe less

since they'll only do one on your daughter. Having the cast on for three weeks

will assist in her not feeling pressure on the ankle, but she may hate having

the cast for that long because she is mobile.

w/ bcf 23/7

wrote:

Hi-

I posted a couple months ago about my daughter Mia (2 yrs old,

unilateral left clubfoot) and received some really helpful replies

about what we saw as a possible relapse. Kori especially was so

helpful- and based on that, we decided to contact Dr. Ponseti after

we saw Dr. Noonan here in Wisconsin again.

What we found out, was that what we thought we were seeing (her foot

pointing inward) wasn't really what we should have been looking for-

we should have been looking for her heel to always touch down when

she walks. When we took her to see Dr. Noonan to discuss it, that

was what he said he was looking for. And he seemed more concerned

with what we were seeing than any observations he was making. He

basically said that based on our concerns, he recommended a tendon

lengthoning surgery under anesthesia at the end of this month,

followed by about six weeks of casting and then she would wear the

shoes only at night. He was going to make a mold of her foot so that

we could get the shoe because we told him that was what we

wanted to try this time (since we had SO much trouble keeping the

markell shoes on her feet when she was a baby).

SO- initially we made the appointment, but I didn't feel right about

it. I contacted Dr. Ponseti and showed him some pictures. When he

first wrote me back, he said that it looked like she was

dorsiflexing to a 5, which is usually sufficient. And that he did

NOT recommend a tendon lengthoning like Dr. Noonan wanted to do- he

said he could do a tenotomy on her with a LOCAL if her foot was

indeed reverting back.

Then yesterday I talked to his secretary about the consultation

appointment I made for Dr. P. to see her. After we got off the

phone, she wrote me that Dr. Ponseti reviewed our e-mails and

pictures again and decided that he will cast her at what was to be

our consultation appointment. She'll be recasted a week later, then

a week after that she'll have a tenotomy. Then she'll wear the cast

for 3 weeks after that.

I'm not sure what made him sure that this should be the course of

action, but we'll definitely go with what he says.

Is there anyone on the board who went through this procedure with a

2-yr old (or older?) Do you have any advice for us? We are SO

nervous about how our unbelievably active 2 yr old will deal with a

cast right when summer finally got here and she can finally go

outside and play But I do know this is all about the big picture

and not these few weeks. We can get through it, but I'm wondering if

anyone can give us advice for making it easier?? We are just really

nervous.

Also: do you think they will let me be in the room with her when she

has the tenotomy done? Because she'll be awake, I can't imagine

leaving her alone for that. I don't think I can do it.

And then the shoes: unlike Dr. Noonan who said she would wear the

shoes only at night " because walking all day stretches out the

tendon enough as it is " , is Dr. P. going to have her wear the

shoes all the time?

I know we'll find all of this out from him when we go to Iowa, but I

thought maybe some of you might be able to make this more clear for

me, and give us any advice you had...............sorry to write such

a book.....

Thanks in advance...........

[Guest guest]

-

Best wishes with your upcoming ponseti visit-you are certainly in

good hands. With regards to casting/2 year old, my son is currently

in a cast-not his foot-his arm and it took him just 1 day to get

used to the added weight, figure out what he can/can't do, and off

and running he went. With her age-I would suggest that you have

ponseti reinforce her foot area as she will want to walk on the

cast. Talk with Dr P about what she can and can't do. We trick david

into resting his arm and elevating it at the same time by allowing

him to watch his favorite tv show-jo jo's circus. When the show is

on, he sits in his little arm chair and therefore resting his arm.

The good news is that you are doing this early in the swim/summer

season so she shouldn't miss out on all the outdoor activities!! She

may get frustrated but these little guys are so resilent that it

doesn't and won't slow them down for long!! Good luck!! The other

thing ponseti is a huge proponent of is getting the child up and

walking-I don't foresee him increasing mia's hours after the

procedure is done as he sees the benefit that walking does.

good luck!!

kathleen

mom to david bcf fab 12/7

>

> Hi-

>

> I posted a couple months ago about my daughter Mia (2 yrs old,

> unilateral left clubfoot) and received some really helpful replies

> about what we saw as a possible relapse. Kori especially was so

> helpful- and based on that, we decided to contact Dr. Ponseti

after

> we saw Dr. Noonan here in Wisconsin again.

>

> What we found out, was that what we thought we were seeing (her

foot

> pointing inward) wasn't really what we should have been looking

for-

> we should have been looking for her heel to always touch down when

> she walks. When we took her to see Dr. Noonan to discuss it, that

> was what he said he was looking for. And he seemed more concerned

> with what we were seeing than any observations he was making. He

> basically said that based on our concerns, he recommended a tendon

> lengthoning surgery under anesthesia at the end of this month,

> followed by about six weeks of casting and then she would wear the

> shoes only at night. He was going to make a mold of her foot so

that

> we could get the shoe because we told him that was what

we

> wanted to try this time (since we had SO much trouble keeping the

> markell shoes on her feet when she was a baby).

>

> SO- initially we made the appointment, but I didn't feel right

about

> it. I contacted Dr. Ponseti and showed him some pictures. When he

> first wrote me back, he said that it looked like she was

> dorsiflexing to a 5, which is usually sufficient. And that he did

> NOT recommend a tendon lengthoning like Dr. Noonan wanted to do-

he

> said he could do a tenotomy on her with a LOCAL if her foot was

> indeed reverting back.

>

> Then yesterday I talked to his secretary about the consultation

> appointment I made for Dr. P. to see her. After we got off the

> phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> pictures again and decided that he will cast her at what was to be

> our consultation appointment. She'll be recasted a week later,

then

> a week after that she'll have a tenotomy. Then she'll wear the

cast

> for 3 weeks after that.

>

> I'm not sure what made him sure that this should be the course of

> action, but we'll definitely go with what he says.

>

> Is there anyone on the board who went through this procedure with

a

> 2-yr old (or older?) Do you have any advice for us? We are SO

> nervous about how our unbelievably active 2 yr old will deal with

a

> cast right when summer finally got here and she can finally go

> outside and play But I do know this is all about the big

picture

> and not these few weeks. We can get through it, but I'm wondering

if

> anyone can give us advice for making it easier?? We are just

really

> nervous.

>

> Also: do you think they will let me be in the room with her when

she

> has the tenotomy done? Because she'll be awake, I can't imagine

> leaving her alone for that. I don't think I can do it.

>

> And then the shoes: unlike Dr. Noonan who said she would wear the

> shoes only at night " because walking all day stretches out the

> tendon enough as it is " , is Dr. P. going to have her wear the

> shoes all the time?

>

> I know we'll find all of this out from him when we go to Iowa, but

I

> thought maybe some of you might be able to make this more clear

for

> me, and give us any advice you had...............sorry to write

such

> a book.....

>

> Thanks in advance...........

>

>

>

[Guest guest]

My oldest son went to Ponseti at 20 months old and was re-casted. He was

HEAVY! lol, but we managed. It didn't slow him down any, he managed to climb up

stairs and in to chairs and stand tippy toe in the casts.

s.

Re: Update and more questions about my 2 yr old

,

I unfortunately don't have a lot of advice for you on the casting

part. I can't imagine my son (nearly 20 months) in a cast; although

of course we would deal if we had to, just like I'm sure you all will

do, muddling through somehow. One thing I can say from my own

experience, having a clubfoot myself, is that when I had my casts on

when I was little my mom and I read A LOT!

I mainly wanted to just say 'well done' on listening to your mother's

instinct. Not to say that Dr. Noonan was wrong, but just that it is

pretty much next to impossible to go wrong by consulting w/ Dr. P.

And now, you will have the peace of mind that comes from taking your

child to the very best.

As far as your question about the brace, it is difficult to say,

because Dr. P has been prescribing different brace wear routines for

different children lately. My guess would be that you would not need

to go back to fulltime wear but that he might have you start out with

some increase in hours from what you have been doing. But again,

this is just a guess.

Hope this helps a little bit, : )

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

>

> Hi-

>

> I posted a couple months ago about my daughter Mia (2 yrs old,

> unilateral left clubfoot) and received some really helpful replies

> about what we saw as a possible relapse. Kori especially was so

> helpful- and based on that, we decided to contact Dr. Ponseti after

> we saw Dr. Noonan here in Wisconsin again.

>

> What we found out, was that what we thought we were seeing (her foot

> pointing inward) wasn't really what we should have been looking for-

> we should have been looking for her heel to always touch down when

> she walks. When we took her to see Dr. Noonan to discuss it, that

> was what he said he was looking for. And he seemed more concerned

> with what we were seeing than any observations he was making. He

> basically said that based on our concerns, he recommended a tendon

> lengthoning surgery under anesthesia at the end of this month,

> followed by about six weeks of casting and then she would wear the

> shoes only at night. He was going to make a mold of her foot so that

> we could get the shoe because we told him that was what we

> wanted to try this time (since we had SO much trouble keeping the

> markell shoes on her feet when she was a baby).

>

> SO- initially we made the appointment, but I didn't feel right about

> it. I contacted Dr. Ponseti and showed him some pictures. When he

> first wrote me back, he said that it looked like she was

> dorsiflexing to a 5, which is usually sufficient. And that he did

> NOT recommend a tendon lengthoning like Dr. Noonan wanted to do- he

> said he could do a tenotomy on her with a LOCAL if her foot was

> indeed reverting back.

>

> Then yesterday I talked to his secretary about the consultation

> appointment I made for Dr. P. to see her. After we got off the

> phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> pictures again and decided that he will cast her at what was to be

> our consultation appointment. She'll be recasted a week later, then

> a week after that she'll have a tenotomy. Then she'll wear the cast

> for 3 weeks after that.

>

> I'm not sure what made him sure that this should be the course of

> action, but we'll definitely go with what he says.

>

> Is there anyone on the board who went through this procedure with a

> 2-yr old (or older?) Do you have any advice for us? We are SO

> nervous about how our unbelievably active 2 yr old will deal with a

> cast right when summer finally got here and she can finally go

> outside and play But I do know this is all about the big picture

> and not these few weeks. We can get through it, but I'm wondering if

> anyone can give us advice for making it easier?? We are just really

> nervous.

>

> Also: do you think they will let me be in the room with her when she

> has the tenotomy done? Because she'll be awake, I can't imagine

> leaving her alone for that. I don't think I can do it.

>

> And then the shoes: unlike Dr. Noonan who said she would wear the

> shoes only at night " because walking all day stretches out the

> tendon enough as it is " , is Dr. P. going to have her wear the

> shoes all the time?

>

> I know we'll find all of this out from him when we go to Iowa, but I

> thought maybe some of you might be able to make this more clear for

> me, and give us any advice you had...............sorry to write such

> a book.....

>

> Thanks in advance...........

>

>

>

[Guest guest]

Both my husband and I were in the room for Aleksander's tenotomy. He

was an infant then, so I'm not sure if things would be different for

a toddler.

Aleksander, 11/24/04 bcf

> Hi-

>

> I posted a couple months ago about my daughter Mia (2 yrs old,

> unilateral left clubfoot) and received some really helpful replies

> about what we saw as a possible relapse. Kori especially was so

> helpful- and based on that, we decided to contact Dr. Ponseti

after

> we saw Dr. Noonan here in Wisconsin again.

>

> What we found out, was that what we thought we were seeing (her

foot

> pointing inward) wasn't really what we should have been looking

for-

> we should have been looking for her heel to always touch down when

> she walks. When we took her to see Dr. Noonan to discuss it, that

> was what he said he was looking for. And he seemed more concerned

> with what we were seeing than any observations he was making. He

> basically said that based on our concerns, he recommended a tendon

> lengthoning surgery under anesthesia at the end of this month,

> followed by about six weeks of casting and then she would wear the

> shoes only at night. He was going to make a mold of her foot so

that

> we could get the shoe because we told him that was what

we

> wanted to try this time (since we had SO much trouble keeping the

> markell shoes on her feet when she was a baby).

>

> SO- initially we made the appointment, but I didn't feel right

about

> it. I contacted Dr. Ponseti and showed him some pictures. When he

> first wrote me back, he said that it looked like she was

> dorsiflexing to a 5, which is usually sufficient. And that he did

> NOT recommend a tendon lengthoning like Dr. Noonan wanted to do-

he

> said he could do a tenotomy on her with a LOCAL if her foot was

> indeed reverting back.

>

> Then yesterday I talked to his secretary about the consultation

> appointment I made for Dr. P. to see her. After we got off the

> phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> pictures again and decided that he will cast her at what was to be

> our consultation appointment. She'll be recasted a week later,

then

> a week after that she'll have a tenotomy. Then she'll wear the

cast

> for 3 weeks after that.

>

> I'm not sure what made him sure that this should be the course of

> action, but we'll definitely go with what he says.

>

> Is there anyone on the board who went through this procedure with

a

> 2-yr old (or older?) Do you have any advice for us? We are SO

> nervous about how our unbelievably active 2 yr old will deal with

a

> cast right when summer finally got here and she can finally go

> outside and play But I do know this is all about the big

picture

> and not these few weeks. We can get through it, but I'm wondering

if

> anyone can give us advice for making it easier?? We are just

really

> nervous.

>

> Also: do you think they will let me be in the room with her when

she

> has the tenotomy done? Because she'll be awake, I can't imagine

> leaving her alone for that. I don't think I can do it.

>

> And then the shoes: unlike Dr. Noonan who said she would wear the

> shoes only at night " because walking all day stretches out the

> tendon enough as it is " , is Dr. P. going to have her wear the

> shoes all the time?

>

> I know we'll find all of this out from him when we go to Iowa, but

I

> thought maybe some of you might be able to make this more clear

for

> me, and give us any advice you had...............sorry to write

such

> a book.....

>

> Thanks in advance...........

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I am just a lurker, but wanted to say that my almost 4yr old(next

week) had been refered for surgery, and we sought a 2nd opinion from

a Ponseti dr. So, my son is currently in his second set of full leg

Ponseti casts. He did very well with his first set(had them on a

week) He never asked for them to be off. He did complain of

soreness in his thighs and knees, so I gave him motrin for the

aches. The added weight made his legs heavy, and he was scooting to

get where he wanted. Casts haven't slowed him down, he has climbed

up and down our stairs, gets out of bed himself, doesn't seem to be

frustrated. That was my big fear. The new casts are even heavier

since they stay on two weeks and he softened the heels of the first

ones they put an extra layer of fiberglass(has plaster up to the

knees and then two rolls of fiberglass to his upper thighs on each

leg) I do have to help him with the bathroom, and he wash his hair

and upper body by laying him on the kitchen counter. I had the same

worries, and it really hasn't been as bad as I feared. Also, take

some " before " pictures for yourself to see the improvements. I have

pictures now showing the improvement from before, and after his

first set of casts. , mom to bilateral clubfeet

>

> Hi-

>

> I posted a couple months ago about my daughter Mia (2 yrs old,

> unilateral left clubfoot) and received some really helpful replies

> about what we saw as a possible relapse. Kori especially was so

> helpful- and based on that, we decided to contact Dr. Ponseti

after

> we saw Dr. Noonan here in Wisconsin again.

>

> What we found out, was that what we thought we were seeing (her

foot

> pointing inward) wasn't really what we should have been looking

for-

> we should have been looking for her heel to always touch down when

> she walks. When we took her to see Dr. Noonan to discuss it, that

> was what he said he was looking for. And he seemed more concerned

> with what we were seeing than any observations he was making. He

> basically said that based on our concerns, he recommended a tendon

> lengthoning surgery under anesthesia at the end of this month,

> followed by about six weeks of casting and then she would wear the

> shoes only at night. He was going to make a mold of her foot so

that

> we could get the shoe because we told him that was what

we

> wanted to try this time (since we had SO much trouble keeping the

> markell shoes on her feet when she was a baby).

>

> SO- initially we made the appointment, but I didn't feel right

about

> it. I contacted Dr. Ponseti and showed him some pictures. When he

> first wrote me back, he said that it looked like she was

> dorsiflexing to a 5, which is usually sufficient. And that he did

> NOT recommend a tendon lengthoning like Dr. Noonan wanted to do-

he

> said he could do a tenotomy on her with a LOCAL if her foot was

> indeed reverting back.

>

> Then yesterday I talked to his secretary about the consultation

> appointment I made for Dr. P. to see her. After we got off the

> phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> pictures again and decided that he will cast her at what was to be

> our consultation appointment. She'll be recasted a week later,

then

> a week after that she'll have a tenotomy. Then she'll wear the

cast

> for 3 weeks after that.

>

> I'm not sure what made him sure that this should be the course of

> action, but we'll definitely go with what he says.

>

> Is there anyone on the board who went through this procedure with

a

> 2-yr old (or older?) Do you have any advice for us? We are SO

> nervous about how our unbelievably active 2 yr old will deal with

a

> cast right when summer finally got here and she can finally go

> outside and play But I do know this is all about the big

picture

> and not these few weeks. We can get through it, but I'm wondering

if

> anyone can give us advice for making it easier?? We are just

really

> nervous.

>

> Also: do you think they will let me be in the room with her when

she

> has the tenotomy done? Because she'll be awake, I can't imagine

> leaving her alone for that. I don't think I can do it.

>

> And then the shoes: unlike Dr. Noonan who said she would wear the

> shoes only at night " because walking all day stretches out the

> tendon enough as it is " , is Dr. P. going to have her wear the

> shoes all the time?

>

> I know we'll find all of this out from him when we go to Iowa, but

I

> thought maybe some of you might be able to make this more clear

for

> me, and give us any advice you had...............sorry to write

such

> a book.....

>

> Thanks in advance...........

>

>

>

[Guest guest]

Very cool !

Would you be able to share some of these pictures with us when he's

all done? It would be lovely to have pictures of 's whole

treatment process to share with people who may be wondering if they

too can go this route after being told surgery is needed. To see a

relapse of sorts at this age be corrected with a true Ponseti doc

would sure give parents incentive to at least try with a second

opinion doc. I for one can't wait to hear about the final results

for little , he sure sounds like a trooper... as does his mama :~}

and hey woman... de-lurk more often! You have experiences we all

could benefit from, love to see you here more :~}

Kori

p.s. - we do have a list dedicated to sharing photos in emails as

attachments. If you or anyone would like to join us to share feet

and faces... here's the link http://health.groups.yahoo.com/group/CFPics/

There is a short survey which is found at the bottom of the

attachment file sent to the email addy used to subscribe to. Just

reply to that email and paste the survey in to fill out and send it

back. We get people approved ASAP after this survey is returned.

At 08:13 AM 5/17/2006, you wrote:

>Hi ,

> I am just a lurker, but wanted to say that my almost 4yr old(next

>week) had been refered for surgery, and we sought a 2nd opinion from

>a Ponseti dr. So, my son is currently in his second set of full leg

>Ponseti casts. He did very well with his first set(had them on a

>week) He never asked for them to be off. He did complain of

>soreness in his thighs and knees, so I gave him motrin for the

>aches. The added weight made his legs heavy, and he was scooting to

>get where he wanted. Casts haven't slowed him down, he has climbed

>up and down our stairs, gets out of bed himself, doesn't seem to be

>frustrated. That was my big fear. The new casts are even heavier

>since they stay on two weeks and he softened the heels of the first

>ones they put an extra layer of fiberglass(has plaster up to the

>knees and then two rolls of fiberglass to his upper thighs on each

>leg) I do have to help him with the bathroom, and he wash his hair

>and upper body by laying him on the kitchen counter. I had the same

>worries, and it really hasn't been as bad as I feared. Also, take

>some " before " pictures for yourself to see the improvements. I have

>pictures now showing the improvement from before, and after his

>first set of casts. , mom to bilateral clubfeet

>

>

> >

> > Hi-

> >

> > I posted a couple months ago about my daughter Mia (2 yrs old,

> > unilateral left clubfoot) and received some really helpful replies

> > about what we saw as a possible relapse. Kori especially was so

> > helpful- and based on that, we decided to contact Dr. Ponseti

>after

> > we saw Dr. Noonan here in Wisconsin again.

> >

> > What we found out, was that what we thought we were seeing (her

>foot

> > pointing inward) wasn't really what we should have been looking

>for-

> > we should have been looking for her heel to always touch down when

> > she walks. When we took her to see Dr. Noonan to discuss it, that

> > was what he said he was looking for. And he seemed more concerned

> > with what we were seeing than any observations he was making. He

> > basically said that based on our concerns, he recommended a tendon

> > lengthoning surgery under anesthesia at the end of this month,

> > followed by about six weeks of casting and then she would wear the

> > shoes only at night. He was going to make a mold of her foot so

>that

> > we could get the shoe because we told him that was what

>we

> > wanted to try this time (since we had SO much trouble keeping the

> > markell shoes on her feet when she was a baby).

> >

> > SO- initially we made the appointment, but I didn't feel right

>about

> > it. I contacted Dr. Ponseti and showed him some pictures. When he

> > first wrote me back, he said that it looked like she was

> > dorsiflexing to a 5, which is usually sufficient. And that he did

> > NOT recommend a tendon lengthoning like Dr. Noonan wanted to do-

>he

> > said he could do a tenotomy on her with a LOCAL if her foot was

> > indeed reverting back.

> >

> > Then yesterday I talked to his secretary about the consultation

> > appointment I made for Dr. P. to see her. After we got off the

> > phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> > pictures again and decided that he will cast her at what was to be

> > our consultation appointment. She'll be recasted a week later,

>then

> > a week after that she'll have a tenotomy. Then she'll wear the

>cast

> > for 3 weeks after that.

> >

> > I'm not sure what made him sure that this should be the course of

> > action, but we'll definitely go with what he says.

> >

> > Is there anyone on the board who went through this procedure with

>a

> > 2-yr old (or older?) Do you have any advice for us? We are SO

> > nervous about how our unbelievably active 2 yr old will deal with

>a

> > cast right when summer finally got here and she can finally go

> > outside and play But I do know this is all about the big

>picture

> > and not these few weeks. We can get through it, but I'm wondering

>if

> > anyone can give us advice for making it easier?? We are just

>really

> > nervous.

> >

> > Also: do you think they will let me be in the room with her when

>she

> > has the tenotomy done? Because she'll be awake, I can't imagine

> > leaving her alone for that. I don't think I can do it.

> >

> > And then the shoes: unlike Dr. Noonan who said she would wear the

> > shoes only at night " because walking all day stretches out the

> > tendon enough as it is " , is Dr. P. going to have her wear the

> > shoes all the time?

> >

> > I know we'll find all of this out from him when we go to Iowa, but

>I

> > thought maybe some of you might be able to make this more clear

>for

> > me, and give us any advice you had...............sorry to write

>such

> > a book.....

> >

> > Thanks in advance...........

> >

> >

> >

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Kori, I will try to share them. I am not good at figuring our

digital camera yet. It was a Christmas present. The memory that it takes

uses up too much space to usually post them, but by the time he is

finished I will hopefully be more computer savy. He is being treated by

Dr. Dobbs, btw. Dr. Dobbs thinks he will have 's adductus

corrected in 2 maybe 3 casts, and then bar at night for 6 to 9 mos. There

is a possibility of the ATTT, but he said he will give us the answer on

that after the forefeet are straight.

>

>

>

> Very cool !

>

> Would you be able to share some of these pictures with us when he's all

> done? & nbsp; It would be lovely to have pictures of 's whole

> treatment process to share with people who may be wondering if they too

> can go this route after being told surgery is needed. & nbsp; To see a

> relapse of sorts at this age be corrected with a true Ponseti doc would

> sure give parents incentive to at least try with a second

> opinion doc. & nbsp; I for one can't wait to hear about the final results

> for little , he sure sounds like a trooper... & nbsp; as does his

> mama :~}

>

> and hey woman... & nbsp; de-lurk more often! & nbsp; You have experiences we

> all could benefit from, love to see you here more & nbsp; :~}

>

> Kori

> p.s. - we do have a list dedicated to sharing photos in emails as

> attachments. & nbsp; If you or anyone would like to join us to share feet

> and faces... & nbsp; here's the link

> http://health.groups.yahoo.com/group/CFPics/

>

> There is a short survey which is found at the bottom of the

> attachment file sent to the email addy used to subscribe to. Just reply

> to that email and paste the survey in to fill out and send it

> back. & nbsp; We get people approved ASAP after this survey is returned.

>

>

> At 08:13 AM 5/17/2006, you wrote:

> & gt;Hi ,

> & gt; & nbsp; & nbsp; & nbsp; I am just a lurker, but wanted to say that my

> almost 4yr old(next & gt;week) had been refered for surgery, and we

> sought a 2nd opinion from & gt;a Ponseti dr. & nbsp; So, my son is

> currently in his second set of full leg & gt;Ponseti casts. & nbsp; He did

> very well with his first set(had them on a & gt;week) He never asked for

> them to be off. & nbsp; He did complain of & gt;soreness in his thighs and

> knees, so I gave him motrin for the & gt;aches. & nbsp; The added weight

> made his legs heavy, and he was scooting to & gt;get where he

> wanted. & nbsp; Casts haven't slowed him down, he has climbed & gt;up and

> down our stairs, gets out of bed himself, doesn't seem to be

> & gt;frustrated. & nbsp; That was my big fear. & nbsp; The new casts are even

> heavier & gt;since they stay on two weeks and he softened the heels of

> the first & gt;ones they put an extra layer of fiberglass(has plaster up

> to the & gt;knees and then two rolls of fiberglass to his upper thighs on

> each & gt;leg) & nbsp; I do have to help him with the bathroom, and he wash

> his hair & gt;and upper body by laying him on the kitchen counter. & nbsp;

> I had the same & gt;worries, and it really hasn't been as bad as I

> feared. & nbsp; Also, take & gt;some & quot;before & quot; pictures for

> yourself to see the improvements. & nbsp; I have & gt;pictures now showing

> the improvement from before, and after his & gt;first set of casts. & nbsp;

> , mom to bilateral clubfeet & gt;

> & gt;

> & gt; & gt;

> & gt; & gt; Hi-

> & gt; & gt;

> & gt; & gt; I posted a couple months ago about my daughter Mia (2 yrs old,

> & gt; & gt; unilateral left clubfoot) and received some really helpful

> replies & gt; & gt; about what we saw as a possible relapse. Kori

> especially was so & gt; & gt; helpful- and based on that, we decided to

> contact Dr. Ponseti & gt;after

> & gt; & gt; we saw Dr. Noonan here in Wisconsin again.

> & gt; & gt;

> & gt; & gt; What we found out, was that what we thought we were seeing

> (her & gt;foot

> & gt; & gt; pointing inward) wasn't really what we should have been

> looking & gt;for-

> & gt; & gt; we should have been looking for her heel to always touch down

> when & gt; & gt; she walks. When we took her to see Dr. Noonan to discuss

> it, that & gt; & gt; was what he said he was looking for. And he seemed

> more concerned & gt; & gt; with what we were seeing than any observations

> he was making. He & gt; & gt; basically said that based on our concerns,

> he recommended a tendon & gt; & gt; lengthoning surgery under anesthesia

> at the end of this month, & gt; & gt; followed by about six weeks of

> casting and then she would wear the & gt; & gt; shoes only at night. He

> was going to make a mold of her foot so & gt;that

> & gt; & gt; we could get the shoe because we told him that was

> what & gt;we

> & gt; & gt; wanted to try this time (since we had SO much trouble keeping

> the & gt; & gt; markell shoes on her feet when she was a baby).

> & gt; & gt;

> & gt; & gt; SO- initially we made the appointment, but I didn't feel right

> & gt;about

> & gt; & gt; it. I contacted Dr. Ponseti and showed him some pictures. When

> he & gt; & gt; first wrote me back, he said that it looked like she was

> & gt; & gt; dorsiflexing to a 5, which is usually sufficient. And that he

> did & gt; & gt; NOT recommend a tendon lengthoning like Dr. Noonan wanted

> to do- & gt;he

> & gt; & gt; said he could do a tenotomy on her with a LOCAL if her foot

> was & gt; & gt; indeed reverting back.

> & gt; & gt;

> & gt; & gt; Then yesterday I talked to his secretary about the

> consultation & gt; & gt; appointment I made for Dr. P. to see her. After

> we got off the & gt; & gt; phone, she wrote me that Dr. Ponseti reviewed

> our e-mails and & gt; & gt; pictures again and decided that he will cast

> her at what was to be & gt; & gt; our consultation appointment. She'll be

> recasted a week later, & gt;then

> & gt; & gt; a week after that she'll have a tenotomy. Then she'll wear the

> & gt;cast

> & gt; & gt; for 3 weeks after that.

> & gt; & gt;

> & gt; & gt; I'm not sure what made him sure that this should be the course

> of & gt; & gt; action, but we'll definitely go with what he says.

> & gt; & gt;

> & gt; & gt; Is there anyone on the board who went through this procedure

> with & gt;a

> & gt; & gt; 2-yr old (or older?) Do you have any advice for us? We are SO

> & gt; & gt; nervous about how our unbelievably active 2 yr old will deal

> with & gt;a

> & gt; & gt; cast right when summer finally got here and she can finally go

> & gt; & gt; outside and play & nbsp; But I do know this is all about the

> big & gt;picture

> & gt; & gt; and not these few weeks. We can get through it, but I'm

> wondering & gt;if

> & gt; & gt; anyone can give us advice for making it easier?? & nbsp; We are

> just & gt;really

> & gt; & gt; nervous.

> & gt; & gt;

> & gt; & gt; Also: do you think they will let me be in the room with her

> when & gt;she

> & gt; & gt; has the tenotomy done? Because she'll be awake, I can't

> imagine & gt; & gt; leaving her alone for that. I don't think I can do it.

> & gt; & gt;

> & gt; & gt; And then the shoes: unlike Dr. Noonan who said she would wear

> the & gt; & gt; shoes only at night & quot;because walking all day

> stretches out the & gt; & gt; tendon enough as it is & quot;, is Dr. P.

> going to have her wear the & gt; & gt; shoes all the time?

> & gt; & gt;

> & gt; & gt; I know we'll find all of this out from him when we go to Iowa,

> but & gt;I

> & gt; & gt; thought maybe some of you might be able to make this more

> clear & gt;for

> & gt; & gt; me, and give us any advice you had...............sorry to

> write & gt;such

> & gt; & gt; a book.....

> & gt; & gt;

> & gt; & gt; Thanks in advance...........

> & gt; & gt;

> & gt; & gt;

> & gt; & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

> & gt;

[Guest guest]

Thanks so much to all of you who gave me advice (, Kathleen, S.,

Allyson, etc.), I really appreciate it! I feel much better after

reading some of your responses. I do feel so much better now that we

are in Dr. P.'s hands, no matter what we end up going through...

I will be hanging out at the board now so I can learn more from all of

you... and maybe later I can help others going through the same

things...

in WI

[Guest guest]

Yea for ! This group has been around more than six years and it's

survival depends n people just like you, who come, learn, and continue to help

others who come later.

s.

Re: Update and more questions about my 2 yr old

Thanks so much to all of you who gave me advice (, Kathleen, S.,

Allyson, etc.), I really appreciate it! I feel much better after

reading some of your responses. I do feel so much better now that we

are in Dr. P.'s hands, no matter what we end up going through...

I will be hanging out at the board now so I can learn more from all of

you... and maybe later I can help others going through the same

things...

in WI

[Guest guest]

You're welcome ! It's very exciting to hear you're where you

are instead of the OR right now. As we like to say, you can always

go back for surgery, but you can't go back to Ponseti after surgery

(very well, although there are some children who have been helped

after surgery by the good doc, if only to avoid more big surgeries).

As far as the camera, is it that when you send a picture to yahoo

groups that it gets rejected? If so, this is because yahoo only

allows attachments under 1mb and you probably got a very nice high

resolution camera and the pictures are just too big. This is easy to

solve, all you have to do is reduce the size of the picture, rename

it and send the smaller one. If you would like a nice EASY program

to do this with, download this program. It is FREE and very very

easy to use. go to www.irfanview.com and download both the program

and the plug in's (two downloads). Put them into their own folder (I

use a download folder in my documents, and then each download gets

it's own sub folder with appropriate name). Then double click on the

program file you downloaded and it'll install. Then double click the

plug in's file you downloaded, it too installs. At this point, you

are ready to resize your pictures. Open your photo in irfanview,

select " Image " from the menu bar, and then select

" resize/resample " . There are half a million options for resizing

here, a good option is to just use the 640 x 480 option or use the

percentage area. Make sure your file type is .jpeg and have at it.

Generally, files about 200-300kb is plenty good and you can then send

4 or 5 photos in one email to a yahoo group.

Since your son is so old, I would highly recommend that you get him

the Ponseti/ FAB. I would not want my 4yo in the Dobbs AFO's

for many reasons. If you want all those reasons detailed, let me

know. But having myself here a 3yo in the FAB 10-14hr/d I can't

recommend this particular FAB any more. I will send you a picture

that should tell you why I like this FAB for older kids so

much... it simply is BEST! I know that Dr. Dobbs will listen if you

tell him that you want the PM's so I hope you will consider them now

so that you can get his impressions to soon enough for him to

send you shoes and bar in time for 's casts to come

off. Darbi (my 3yo) wears a size 6 in these, and has recently

introduced a size 7 made with these larger feet in mind. I'm

thinking would be in one of those two sizes due to his age so

this would be perfect for you.

ok, so glad to have you here and if I can help further please let me

know. I'll send you the amazing Darbi the Macarena girl pictures

here as soon as I locate them on the network. I think you'll be

nicely impressed with this FAB!

Kori

At 04:57 PM 5/17/2006, you wrote:

>Thank you Kori, I will try to share them. I am not good at figuring our

>digital camera yet. It was a Christmas present. The memory that it takes

>uses up too much space to usually post them, but by the time he is

>finished I will hopefully be more computer savy. He is being treated by

>Dr. Dobbs, btw. Dr. Dobbs thinks he will have 's adductus

>corrected in 2 maybe 3 casts, and then bar at night for 6 to 9 mos. There

>is a possibility of the ATTT, but he said he will give us the answer on

>that after the forefeet are straight.

>

> >

> >

> >

> > Very cool !

> >

> > Would you be able to share some of these pictures with us when he's all

> > done? & nbsp; It would be lovely to have pictures of 's whole

> > treatment process to share with people who may be wondering if they too

> > can go this route after being told surgery is needed. & nbsp; To see a

> > relapse of sorts at this age be corrected with a true Ponseti doc would

> > sure give parents incentive to at least try with a second

> > opinion doc. & nbsp; I for one can't wait to hear about the final results

> > for little , he sure sounds like a trooper... & nbsp; as does his

> > mama :~}

> >

> > and hey woman... & nbsp; de-lurk more often! & nbsp; You have experiences we

> > all could benefit from, love to see you here more & nbsp; :~}

> >

> > Kori

> > p.s. - we do have a list dedicated to sharing photos in emails as

> > attachments. & nbsp; If you or anyone would like to join us to share feet

> > and faces... & nbsp; here's the link

> > http://health.groups.yahoo.com/group/CFPics/

> >

> > There is a short survey which is found at the bottom of the

> > attachment file sent to the email addy used to subscribe to. Just reply

> > to that email and paste the survey in to fill out and send it

> > back. & nbsp; We get people approved ASAP after this survey is returned.

> >

> >

> > At 08:13 AM 5/17/2006, you wrote:

> > & gt;Hi ,

> > & gt; & nbsp; & nbsp; & nbsp; I am just a lurker, but wanted to say that my

> > almost 4yr old(next & gt;week) had been refered for surgery, and we

> > sought a 2nd opinion from & gt;a Ponseti dr. & nbsp; So, my son is

> > currently in his second set of full leg & gt;Ponseti casts. & nbsp; He did

> > very well with his first set(had them on a & gt;week) He never asked for

> > them to be off. & nbsp; He did complain of & gt;soreness in his thighs and

> > knees, so I gave him motrin for the & gt;aches. & nbsp; The added weight

> > made his legs heavy, and he was scooting to & gt;get where he

> > wanted. & nbsp; Casts haven't slowed him down, he has climbed & gt;up and

> > down our stairs, gets out of bed himself, doesn't seem to be

> > & gt;frustrated. & nbsp; That was my big fear. & nbsp; The new casts are even

> > heavier & gt;since they stay on two weeks and he softened the heels of

> > the first & gt;ones they put an extra layer of fiberglass(has plaster up

> > to the & gt;knees and then two rolls of fiberglass to his upper thighs on

> > each & gt;leg) & nbsp; I do have to help him with the bathroom, and he wash

> > his hair & gt;and upper body by laying him on the kitchen counter. & nbsp;

> > I had the same & gt;worries, and it really hasn't been as bad as I

> > feared. & nbsp; Also, take & gt;some & quot;before & quot; pictures for

> > yourself to see the improvements. & nbsp; I have & gt;pictures now showing

> > the improvement from before, and after his & gt;first set of casts. & nbsp;

> > , mom to bilateral clubfeet & gt;

> > & gt;

> > & gt; & gt;

> > & gt; & gt; Hi-

> > & gt; & gt;

> > & gt; & gt; I posted a couple months ago about my daughter Mia (2 yrs old,

> > & gt; & gt; unilateral left clubfoot) and received some really helpful

> > replies & gt; & gt; about what we saw as a possible relapse. Kori

> > especially was so & gt; & gt; helpful- and based on that, we decided to

> > contact Dr. Ponseti & gt;after

> > & gt; & gt; we saw Dr. Noonan here in Wisconsin again.

> > & gt; & gt;

> > & gt; & gt; What we found out, was that what we thought we were seeing

> > (her & gt;foot

> > & gt; & gt; pointing inward) wasn't really what we should have been

> > looking & gt;for-

> > & gt; & gt; we should have been looking for her heel to always touch down

> > when & gt; & gt; she walks. When we took her to see Dr. Noonan to discuss

> > it, that & gt; & gt; was what he said he was looking for. And he seemed

> > more concerned & gt; & gt; with what we were seeing than any observations

> > he was making. He & gt; & gt; basically said that based on our concerns,

> > he recommended a tendon & gt; & gt; lengthoning surgery under anesthesia

> > at the end of this month, & gt; & gt; followed by about six weeks of

> > casting and then she would wear the & gt; & gt; shoes only at night. He

> > was going to make a mold of her foot so & gt;that

> > & gt; & gt; we could get the shoe because we told him that was

> > what & gt;we

> > & gt; & gt; wanted to try this time (since we had SO much trouble keeping

> > the & gt; & gt; markell shoes on her feet when she was a baby).

> > & gt; & gt;

> > & gt; & gt; SO- initially we made the appointment, but I didn't feel right

> > & gt;about

> > & gt; & gt; it. I contacted Dr. Ponseti and showed him some pictures. When

> > he & gt; & gt; first wrote me back, he said that it looked like she was

> > & gt; & gt; dorsiflexing to a 5, which is usually sufficient. And that he

> > did & gt; & gt; NOT recommend a tendon lengthoning like Dr. Noonan wanted

> > to do- & gt;he

> > & gt; & gt; said he could do a tenotomy on her with a LOCAL if her foot

> > was & gt; & gt; indeed reverting back.

> > & gt; & gt;

> > & gt; & gt; Then yesterday I talked to his secretary about the

> > consultation & gt; & gt; appointment I made for Dr. P. to see her. After

> > we got off the & gt; & gt; phone, she wrote me that Dr. Ponseti reviewed

> > our e-mails and & gt; & gt; pictures again and decided that he will cast

> > her at what was to be & gt; & gt; our consultation appointment. She'll be

> > recasted a week later, & gt;then

> > & gt; & gt; a week after that she'll have a tenotomy. Then she'll wear the

> > & gt;cast

> > & gt; & gt; for 3 weeks after that.

> > & gt; & gt;

> > & gt; & gt; I'm not sure what made him sure that this should be the course

> > of & gt; & gt; action, but we'll definitely go with what he says.

> > & gt; & gt;

> > & gt; & gt; Is there anyone on the board who went through this procedure

> > with & gt;a

> > & gt; & gt; 2-yr old (or older?) Do you have any advice for us? We are SO

> > & gt; & gt; nervous about how our unbelievably active 2 yr old will deal

> > with & gt;a

> > & gt; & gt; cast right when summer finally got here and she can finally go

> > & gt; & gt; outside and play & nbsp; But I do know this is all about the

> > big & gt;picture

> > & gt; & gt; and not these few weeks. We can get through it, but I'm

> > wondering & gt;if

> > & gt; & gt; anyone can give us advice for making it easier?? & nbsp; We are

> > just & gt;really

> > & gt; & gt; nervous.

> > & gt; & gt;

> > & gt; & gt; Also: do you think they will let me be in the room with her

> > when & gt;she

> > & gt; & gt; has the tenotomy done? Because she'll be awake, I can't

> > imagine & gt; & gt; leaving her alone for that. I don't think I can do it.

> > & gt; & gt;

> > & gt; & gt; And then the shoes: unlike Dr. Noonan who said she would wear

> > the & gt; & gt; shoes only at night & quot;because walking all day

> > stretches out the & gt; & gt; tendon enough as it is & quot;, is Dr. P.

> > going to have her wear the & gt; & gt; shoes all the time?

> > & gt; & gt;

> > & gt; & gt; I know we'll find all of this out from him when we go to Iowa,

> > but & gt;I

> > & gt; & gt; thought maybe some of you might be able to make this more

> > clear & gt;for

> > & gt; & gt; me, and give us any advice you had...............sorry to

> > write & gt;such

> > & gt; & gt; a book.....

> > & gt; & gt;

> > & gt; & gt; Thanks in advance...........

> > & gt; & gt;

> > & gt; & gt;

> > & gt; & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

> > & gt;

[Guest guest]

Hi ,

Our daughter with bilateral clubfeet was treated at the age of 3.5

years old by Dr. Ponseti as we had just brought her home from China

at age 34 months and she had never been treated. (The first doctor

we were working with in Utah told us she would probably be an

amputation case AFTER we had been with them for 6 months and they

told us they could correct her all along. That's a whole other I

won't go into now.) As a toddler and just recently becoming a part

of our family we were very concerned about how would respond

to the castings as well. had 17 cast changes and did

extremely well with a tenotomy and ATTT done at the end. 's

case was more involved because of the severity of her case and she

was untreated and walking on those feet before. Of course the first

casting was tough for her, but after that she just went with the

flow. She would actually sometimes ask me when she got to go get

new casts on again and I'd tell her she needed to wait __ days. My

goal when she got her casts on was to show her how much she could

do. The casts didn't stop her. She crawled up and down the stairs,

figured out how to ride the tricycle at RMH, actually walked short

distances with her casts, climbed, handled the potty situation mostly

by herself, got in and out of bed, cruised in her little wheelchair,

and was just a little trooper. Nothing stopped her. Your little Mia

will do well, too. You made such a good decision to follow your

motherly instinct and go to Ponseti. He's amazing and so is Nurse

.

When you are in Iowa City there is a great play and climbing place

towards the end of the Coralville Mall. I waited till was

crawling good and comfortable in her casts before I took her there as

I didn't want her to feel defeated, and she loved it. She could

crawl, climb, slide and all like all the other kids. It's down by

the 'N Noble Store. Plus the RMH now has free passes for

guests to use (just ask at the RMH office) at the Children's Museum

in the mall as well. That's a fun place and sometimes they have

puppet shows, etc. loved riding the merry-go-round at the

mall, too. We really enjoyed our time in Iowa City. There's some

nice walking trails by the RMH and you'll have to go to the lower

city park down the hill from RMH where they have a really cute area

set up with about 6 clean carnival rides that my kids really

enjoyed. Their favorite was the little open train that goes on a

miniature track around a large area and both children and adults can

ride in it. The rides were only 75 cents I think. We did a lot of

driving and exploring. The Amish communities are interesting and

also the Train is supposed to be coming two times this year at

a city that is about 1.5 hours away. You can log onto the

website to get the schedule and see if it happens to coincide with

your time there. The local library has story hour once a week that

enjoyed and also there is a Club Noggin Group for the kids

that meets I think the last Thursday of every month in the morning at

the mall and that was fun. They have some activities for the kids and

a short little movie and I was able to network with some other moms

and got invited to join their mops group. There is just so much to

do out there. It's fun just to go downtown and explore. We also

drove to Milwaukee as we have friends that live there and took the

train with a friend and her 4 year old daughter into Chicago to go to

the American Girl Cafe tea party and we stayed the night.

and I had a ball exploring.

got a bath the morning of each cast change (with a little bit

of vinegar to help break down the casts) since they cut her casts off

by hand instead of the saw. Between castings I'd sponge bathe her and

wash her hair in the sink with her lying on the counter.

I know Dr. Ponseti told me if needed to have the tenotomy

before the ATTT in two segments he would do the tenotomy under

general rather than local because of her age. I'm suspecting he

would do the same with Mia, but I'm not for sure since she's younger

than , but not a baby. I can't give you any advice on the

shoes though, as never wore those because she was so much

older. You will be so happy when you see Dr. Ponseti. He's our

miracle worker! Feel free to contact me privately if you want

anymore info. I would love to talk to you more. Good luck to you

and your little Mia!

Joyce

Mommy to , bcf, 01-03-02

>

> Hi-

>

> I posted a couple months ago about my daughter Mia (2 yrs old,

> unilateral left clubfoot) and received some really helpful replies

> about what we saw as a possible relapse. Kori especially was so

> helpful- and based on that, we decided to contact Dr. Ponseti after

> we saw Dr. Noonan here in Wisconsin again.

>

> What we found out, was that what we thought we were seeing (her

foot

> pointing inward) wasn't really what we should have been looking for-

> we should have been looking for her heel to always touch down when

> she walks. When we took her to see Dr. Noonan to discuss it, that

> was what he said he was looking for. And he seemed more concerned

> with what we were seeing than any observations he was making. He

> basically said that based on our concerns, he recommended a tendon

> lengthoning surgery under anesthesia at the end of this month,

> followed by about six weeks of casting and then she would wear the

> shoes only at night. He was going to make a mold of her foot so

that

> we could get the shoe because we told him that was what we

> wanted to try this time (since we had SO much trouble keeping the

> markell shoes on her feet when she was a baby).

>

> SO- initially we made the appointment, but I didn't feel right

about

> it. I contacted Dr. Ponseti and showed him some pictures. When he

> first wrote me back, he said that it looked like she was

> dorsiflexing to a 5, which is usually sufficient. And that he did

> NOT recommend a tendon lengthoning like Dr. Noonan wanted to do- he

> said he could do a tenotomy on her with a LOCAL if her foot was

> indeed reverting back.

>

> Then yesterday I talked to his secretary about the consultation

> appointment I made for Dr. P. to see her. After we got off the

> phone, she wrote me that Dr. Ponseti reviewed our e-mails and

> pictures again and decided that he will cast her at what was to be

> our consultation appointment. She'll be recasted a week later, then

> a week after that she'll have a tenotomy. Then she'll wear the cast

> for 3 weeks after that.

>

> I'm not sure what made him sure that this should be the course of

> action, but we'll definitely go with what he says.

>

> Is there anyone on the board who went through this procedure with a

> 2-yr old (or older?) Do you have any advice for us? We are SO

> nervous about how our unbelievably active 2 yr old will deal with a

> cast right when summer finally got here and she can finally go

> outside and play But I do know this is all about the big

picture

> and not these few weeks. We can get through it, but I'm wondering

if

> anyone can give us advice for making it easier?? We are just

really

> nervous.

>

> Also: do you think they will let me be in the room with her when

she

> has the tenotomy done? Because she'll be awake, I can't imagine

> leaving her alone for that. I don't think I can do it.

>

> And then the shoes: unlike Dr. Noonan who said she would wear the

> shoes only at night " because walking all day stretches out the

> tendon enough as it is " , is Dr. P. going to have her wear the

> shoes all the time?

>

> I know we'll find all of this out from him when we go to Iowa, but

I

> thought maybe some of you might be able to make this more clear for

> me, and give us any advice you had...............sorry to write

such

> a book.....

>

> Thanks in advance...........

>

>

>

[Guest guest]

I'm very glad to hear that you're going to see Dr. Ponseti, he's such

an incredible person. We were initially treated in Madison by Dr.

Nemeth, and started seeing Dr. Ponseti 5 months into her treatment.

We don't have any experience with Dr. Noonan, other than he helped

with her second tenotomy, we took her to see Dr. Ponseti when those

casts came off. Dr. Ponseti was able to correct her feet in 6 weeks.

Not sure if you're planning on staying in Iowa for her treatment, but

just wanted to let you know that from Madison it's a pretty easy day

trip (about 6 hours round trip). We stayed overnight twice to make

sure her feet wouldn't slip back in the casts, and for the rest of

her appointments we made the weekly trips. Where are you in

Wisconsin? We're in Madison.

I hope everything goes well, you'll definitely be in the best hands!

Jescie and Sierra bcf 6-13-05

>

> Thanks so much to all of you who gave me advice (, Kathleen,

S.,

> Allyson, etc.), I really appreciate it! I feel much better after

> reading some of your responses. I do feel so much better now that

we

> are in Dr. P.'s hands, no matter what we end up going through...

>

> I will be hanging out at the board now so I can learn more from all

of

> you... and maybe later I can help others going through the same

> things...

>

> in WI

>