Re: An overdue update.....

[Guest guest]

,

I have been waiting to see an update from you as I also have an older

cf kiddo. Remember way back when I posted to you about the

possibility of femoral torsion? Did they check for this? Our dr.

was also very puzzled by Evan's feet and his Ponseti-trained

associate was the one who found it. I know it seems like blasphemy

to say this on this site (I'm just repeating the doc's words) but he

said even Dr. P. seems to not be familiar with the fact that all cf

kids have this torsion.

I'll be eagerly awaiting further updates....

and Evan (8-17-00 bcf)

> Sorry it has taken us so long to update but we just got back to

> California on Monday night, and we have been trying to adjust our

> schedules back to west coast time!

> If you don't remember I was having doubts about the treatment and

> overall correction of my daughters feet. She is 2 1/2 and at

about

> 3 weeks old began initial treatment with Dr. Ponseti. We live in

> Southern California and have done follow-up with Dr. Early @

> CHLA, and Dr. King in Tarzana. Our last visit with Dr. King

> about 6 weeks ago we were told that Becky was going to need to wear

a

> brace on her right foot similar to an AFO and then continue with

the

> FAB at night, and that there was a possiblity of ATTT later on.

The

> next day I was on the phone with Dr. Ponseti and was convinced that

> we needed to take her back to Iowa City to be checked out.

> We had a nice trip. We drove from LosAngeles, to Burlington, IA

(my

> IL's live there) I think that it is 37 total driving hours (we

> stopped over 2 nights) and with a 5 year old and a 2 year old

> things went surprisingly smooth.

> The next day we went up to Iowa City and spent the night in the

> Mc house (we were expecting to be casted/possible

ATTT)

> and prepared for appointment the next morning. We saw Dr. Ponseti

> and boy is he just as wonderful as ever!!! He was there with

> another doctor that he was training (I didn't get his name, I was

> busy occuping the kids LOL) But it looks like there is something

> going on with Becky's feet. He decided not to cast her yet, as

that

> isn't really going to help? It is something with the tendons in

her

> feet that only happens in about 5-10% of cases. She still has alot

> of flexiblity, and that is good He upped her hours in the FAB

> to 14 (she was down to 10-12) and told me that if I discontinued

> the brace she would surely relapse. I assured him that we have

come

> this far in treatment we are not about to stop following the

doctors

> orders now! LOL He wants to closely monitor her and I guess he

is

> going to decide next year if she is going to need the ATTT or

not.

> I am real sketchy on all of the particulairs as I was there with

the

> 2 kids alone, and they were up to no good LOL But Dr. Ponseti as

> well as the doctor that was there consulting/training with him were

a

> very puzzled by her feet and spent a great deal of time with her.

I

> am going to email him next week to get all of the information I can

> about what is going on, it will be better for me I think to have it

> all in writing.

> Sorry this has turned into such a long post. I will keep you all

> updated as I find things out.

>

> and Becky 2 1/2, bilateral clubfoot

[Guest guest]

,

To be honest, I totally forgot to ask about that. I will bring it

up though the next time I talk to Dr. Ponseti. But I remember

something being mentioned about Becky " missing " one of the tendons in

her left foot? I am not positive about this but I am pretty sure I

heard that mentioned amidst the chaos LOL

I will try very hard to remember to update the board as to what is

going on. If it helps anyone it is worth the few moments it takes

out of my day to type this up.

I really appreciate your response to my original post. At least I

know that someone read it LMAO

and Becky 2 1/2, bilateral clubfoot

> > Sorry it has taken us so long to update but we just got back to

> > California on Monday night, and we have been trying to adjust our

> > schedules back to west coast time!

> > If you don't remember I was having doubts about the treatment and

> > overall correction of my daughters feet. She is 2 1/2 and at

> about

> > 3 weeks old began initial treatment with Dr. Ponseti. We live

in

> > Southern California and have done follow-up with Dr. Early @

> > CHLA, and Dr. King in Tarzana. Our last visit with Dr. King

> > about 6 weeks ago we were told that Becky was going to need to

wear

> a

> > brace on her right foot similar to an AFO and then continue with

> the

> > FAB at night, and that there was a possiblity of ATTT later on.

> The

> > next day I was on the phone with Dr. Ponseti and was convinced

that

> > we needed to take her back to Iowa City to be checked out.

> > We had a nice trip. We drove from LosAngeles, to Burlington, IA

> (my

> > IL's live there) I think that it is 37 total driving hours (we

> > stopped over 2 nights) and with a 5 year old and a 2 year old

> > things went surprisingly smooth.

> > The next day we went up to Iowa City and spent the night in the

> > Mc house (we were expecting to be casted/possible

> ATTT)

> > and prepared for appointment the next morning. We saw Dr.

Ponseti

> > and boy is he just as wonderful as ever!!! He was there with

> > another doctor that he was training (I didn't get his name, I was

> > busy occuping the kids LOL) But it looks like there is

something

> > going on with Becky's feet. He decided not to cast her yet, as

> that

> > isn't really going to help? It is something with the tendons in

> her

> > feet that only happens in about 5-10% of cases. She still has

alot

> > of flexiblity, and that is good He upped her hours in the

FAB

> > to 14 (she was down to 10-12) and told me that if I

discontinued

> > the brace she would surely relapse. I assured him that we have

> come

> > this far in treatment we are not about to stop following the

> doctors

> > orders now! LOL He wants to closely monitor her and I guess he

> is

> > going to decide next year if she is going to need the ATTT or

> not.

> > I am real sketchy on all of the particulairs as I was there with

> the

> > 2 kids alone, and they were up to no good LOL But Dr. Ponseti

as

> > well as the doctor that was there consulting/training with him

were

> a

> > very puzzled by her feet and spent a great deal of time with

her.

> I

> > am going to email him next week to get all of the information I

can

> > about what is going on, it will be better for me I think to have

it

> > all in writing.

> > Sorry this has turned into such a long post. I will keep you all

> > updated as I find things out.

> >

> > and Becky 2 1/2, bilateral clubfoot

[Guest guest]

,

Wow, I've never heard of a tendon missing. I wonder what on earth

can be done about that??? While I have faith in Dr. Mosca's

diagnosis of the femoral torsion thing, I still have my momma's

antennas up in the air wondering if there is anything they could have

missed. Evan's feet also remain very flexible and he stands flat on

the floor--just turn in when he takes a step. That is why our first

doc. was so mystified and said it wasn't a true relapse but he

obviously didn't know exactly what was going on. Dr. Mosca, who is

Ponseti trained, seemed to know exactly what was happening but....I,

being the queen of worry warts, continue to worry. Please let me

know what Dr. P. says. I know exactly what you mean about not really

being able to concentrate during appts. It will be so helpful for

you to have it all in writing.

By the way, what does LMAO mean? 8)

and Evan (8-17-00, bcf)

> > > Sorry it has taken us so long to update but we just got back to

> > > California on Monday night, and we have been trying to adjust

our

> > > schedules back to west coast time!

> > > If you don't remember I was having doubts about the treatment

and

> > > overall correction of my daughters feet. She is 2 1/2 and at

> > about

> > > 3 weeks old began initial treatment with Dr. Ponseti. We

live

> in

> > > Southern California and have done follow-up with Dr. Early

@

> > > CHLA, and Dr. King in Tarzana. Our last visit with Dr.

King

> > > about 6 weeks ago we were told that Becky was going to need to

> wear

> > a

> > > brace on her right foot similar to an AFO and then continue

with

> > the

> > > FAB at night, and that there was a possiblity of ATTT later

on.

> > The

> > > next day I was on the phone with Dr. Ponseti and was convinced

> that

> > > we needed to take her back to Iowa City to be checked out.

> > > We had a nice trip. We drove from LosAngeles, to Burlington,

IA

> > (my

> > > IL's live there) I think that it is 37 total driving hours (we

> > > stopped over 2 nights) and with a 5 year old and a 2 year old

> > > things went surprisingly smooth.

> > > The next day we went up to Iowa City and spent the night in the

> > > Mc house (we were expecting to be casted/possible

> > ATTT)

> > > and prepared for appointment the next morning. We saw Dr.

> Ponseti

> > > and boy is he just as wonderful as ever!!! He was there with

> > > another doctor that he was training (I didn't get his name, I

was

> > > busy occuping the kids LOL) But it looks like there is

> something

> > > going on with Becky's feet. He decided not to cast her yet,

as

> > that

> > > isn't really going to help? It is something with the tendons

in

> > her

> > > feet that only happens in about 5-10% of cases. She still has

> alot

> > > of flexiblity, and that is good He upped her hours in the

> FAB

> > > to 14 (she was down to 10-12) and told me that if I

> discontinued

> > > the brace she would surely relapse. I assured him that we have

> > come

> > > this far in treatment we are not about to stop following the

> > doctors

> > > orders now! LOL He wants to closely monitor her and I guess

he

> > is

> > > going to decide next year if she is going to need the ATTT or

> > not.

> > > I am real sketchy on all of the particulairs as I was there

with

> > the

> > > 2 kids alone, and they were up to no good LOL But Dr. Ponseti

> as

> > > well as the doctor that was there consulting/training with him

> were

> > a

> > > very puzzled by her feet and spent a great deal of time with

> her.

> > I

> > > am going to email him next week to get all of the information I

> can

> > > about what is going on, it will be better for me I think to

have

> it

> > > all in writing.

> > > Sorry this has turned into such a long post. I will keep you

all

> > > updated as I find things out.

> > >

> > > and Becky 2 1/2, bilateral clubfoot

[Guest guest]

LMAO.... is Laughing My @$$ Off

Becky is due to go back to Iowa sometime next year. Since I have an

older child that is starting kindergarten this year I think we are

going to try to plan it either during spring break or right after

school ends in June. I am leaning towards June since we don't know

exactly what is going to happen at our next appointment, and how long

we will need to be there.

And if you are the Queen of Worrywarts, I will join you there because

I am constantly staring at her feet wondering if there is something

that we have missed.

I will update again when I hear something from Dr. Ponseti!

and Becky (11/12/01, bilateral clubfoot)

> > > > Sorry it has taken us so long to update but we just got back

to

> > > > California on Monday night, and we have been trying to adjust

> our

> > > > schedules back to west coast time!

> > > > If you don't remember I was having doubts about the treatment

> and

> > > > overall correction of my daughters feet. She is 2 1/2 and

at

> > > about

> > > > 3 weeks old began initial treatment with Dr. Ponseti. We

> live

> > in

> > > > Southern California and have done follow-up with Dr.

Early

> @

> > > > CHLA, and Dr. King in Tarzana. Our last visit with Dr.

> King

> > > > about 6 weeks ago we were told that Becky was going to need

to

> > wear

> > > a

> > > > brace on her right foot similar to an AFO and then continue

> with

> > > the

> > > > FAB at night, and that there was a possiblity of ATTT later

> on.

> > > The

> > > > next day I was on the phone with Dr. Ponseti and was

convinced

> > that

> > > > we needed to take her back to Iowa City to be checked out.

> > > > We had a nice trip. We drove from LosAngeles, to Burlington,

> IA

> > > (my

> > > > IL's live there) I think that it is 37 total driving hours

(we

> > > > stopped over 2 nights) and with a 5 year old and a 2 year

old

> > > > things went surprisingly smooth.

> > > > The next day we went up to Iowa City and spent the night in

the

> > > > Mc house (we were expecting to be

casted/possible

> > > ATTT)

> > > > and prepared for appointment the next morning. We saw Dr.

> > Ponseti

> > > > and boy is he just as wonderful as ever!!! He was there

with

> > > > another doctor that he was training (I didn't get his name, I

> was

> > > > busy occuping the kids LOL) But it looks like there is

> > something

> > > > going on with Becky's feet. He decided not to cast her yet,

> as

> > > that

> > > > isn't really going to help? It is something with the

tendons

> in

> > > her

> > > > feet that only happens in about 5-10% of cases. She still

has

> > alot

> > > > of flexiblity, and that is good He upped her hours in

the

> > FAB

> > > > to 14 (she was down to 10-12) and told me that if I

> > discontinued

> > > > the brace she would surely relapse. I assured him that we

have

> > > come

> > > > this far in treatment we are not about to stop following the

> > > doctors

> > > > orders now! LOL He wants to closely monitor her and I

guess

> he

> > > is

> > > > going to decide next year if she is going to need the ATTT or

> > > not.

> > > > I am real sketchy on all of the particulairs as I was there

> with

> > > the

> > > > 2 kids alone, and they were up to no good LOL But Dr.

Ponseti

> > as

> > > > well as the doctor that was there consulting/training with

him

> > were

> > > a

> > > > very puzzled by her feet and spent a great deal of time with

> > her.

> > > I

> > > > am going to email him next week to get all of the information

I

> > can

> > > > about what is going on, it will be better for me I think to

> have

> > it

> > > > all in writing.

> > > > Sorry this has turned into such a long post. I will keep you

> all

> > > > updated as I find things out.

> > > >

> > > > and Becky 2 1/2, bilateral clubfoot

[Guest guest]

> > > Sorry it has taken us so long to update but we just got back

to

> > > California on Monday night, and we have been trying to adjust

our

> > > schedules back to west coast time!

> > > If you don't remember I was having doubts about the treatment

and

> > > overall correction of my daughters feet. She is 2 1/2 and at

> > about

> > > 3 weeks old began initial treatment with Dr. Ponseti. We

live

> in

> > > Southern California and have done follow-up with Dr.

Early @

> > > CHLA, and Dr. King in Tarzana. Our last visit with Dr.

King

> > > about 6 weeks ago we were told that Becky was going to need to

> wear

> > a

> > > brace on her right foot similar to an AFO and then continue

with

> > the

> > > FAB at night, and that there was a possiblity of ATTT later

on.

> > The

> > > next day I was on the phone with Dr. Ponseti and was convinced

> that

> > > we needed to take her back to Iowa City to be checked out.

> > > We had a nice trip. We drove from LosAngeles, to Burlington,

IA

> > (my

> > > IL's live there) I think that it is 37 total driving hours (we

> > > stopped over 2 nights) and with a 5 year old and a 2 year

old

> > > things went surprisingly smooth.

> > > The next day we went up to Iowa City and spent the night in

the

> > > Mc house (we were expecting to be casted/possible

> > ATTT)

> > > and prepared for appointment the next morning. We saw Dr.

> Ponseti

> > > and boy is he just as wonderful as ever!!! He was there with

> > > another doctor that he was training (I didn't get his name, I

was

> > > busy occuping the kids LOL) But it looks like there is

> something

> > > going on with Becky's feet. He decided not to cast her yet,

as

> > that

> > > isn't really going to help? It is something with the tendons

in

> > her

> > > feet that only happens in about 5-10% of cases. She still has

> alot

> > > of flexiblity, and that is good He upped her hours in

the

> FAB

> > > to 14 (she was down to 10-12) and told me that if I

> discontinued

> > > the brace she would surely relapse. I assured him that we

have

> > come

> > > this far in treatment we are not about to stop following the

> > doctors

> > > orders now! LOL He wants to closely monitor her and I guess

he

> > is

> > > going to decide next year if she is going to need the ATTT or

> > not.

> > > I am real sketchy on all of the particulairs as I was there

with

> > the

> > > 2 kids alone, and they were up to no good LOL But Dr.

Ponseti

> as

> > > well as the doctor that was there consulting/training with him

> were

> > a

> > > very puzzled by her feet and spent a great deal of time with

> her.

> > I

> > > am going to email him next week to get all of the information

I

> can

> > > about what is going on, it will be better for me I think to

have

> it

> > > all in writing.

> > > Sorry this has turned into such a long post. I will keep you

all

> > > updated as I find things out.

> > >

> > > and Becky 2 1/2, bilateral clubfoot

[Guest guest]

,

Well, for some reason I think it was my mothers intuition more than

anything. She also kinda walked on the outsides of her feet, and

they just didn't look corrected (I can't think of any other way to

say it) I took her for her regular checkup and brought it up to the

doctor that we were seeing here for follow ups and he said she was

going to need something like AFO's and that she was possibly going to

need the ATTT surgery. Actually his exact words were " Dr. Ponseti

would defineatly do the ATTT surgery but I am going to go

conservative and go with this type of brace first " So the next day

I hopped on the phone and talked to Dr. P and he said that he wanted

to see her and he thought maybe she could use some casting.... but he

was not going to say that she needed the ATTT for sure.

Needless to say I am NOT going to follow up with another doctor

besides Dr. Ponseti. He said that he wanted to see Becky again in

another year. (I think that is because he knows that I have another

child in school) It also isn't as big of a problem for us. My

inlaws live about 2 hours from Iowa City, and my brother inlaw

actually works there at that hospital So it is just the insurance

and the " getting there " .

, I say if you are having so much trouble with your daughters

feet you should talk to Dr. Ponseti. He should be able to help you

out, or at least point you in the right direction!! (((HUGS)))

and Becky (2 1/2, bilateral clubfoot)

> > > > Sorry it has taken us so long to update but we just got back

> to

> > > > California on Monday night, and we have been trying to adjust

> our

> > > > schedules back to west coast time!

> > > > If you don't remember I was having doubts about the treatment

> and

> > > > overall correction of my daughters feet. She is 2 1/2 and

at

> > > about

> > > > 3 weeks old began initial treatment with Dr. Ponseti. We

> live

> > in

> > > > Southern California and have done follow-up with Dr.

> Early @

> > > > CHLA, and Dr. King in Tarzana. Our last visit with Dr.

> King

> > > > about 6 weeks ago we were told that Becky was going to need

to

> > wear

> > > a

> > > > brace on her right foot similar to an AFO and then continue

> with

> > > the

> > > > FAB at night, and that there was a possiblity of ATTT later

> on.

> > > The

> > > > next day I was on the phone with Dr. Ponseti and was

convinced

> > that

> > > > we needed to take her back to Iowa City to be checked out.

> > > > We had a nice trip. We drove from LosAngeles, to Burlington,

> IA

> > > (my

> > > > IL's live there) I think that it is 37 total driving hours

(we

> > > > stopped over 2 nights) and with a 5 year old and a 2 year

> old

> > > > things went surprisingly smooth.

> > > > The next day we went up to Iowa City and spent the night in

> the

> > > > Mc house (we were expecting to be

casted/possible

> > > ATTT)

> > > > and prepared for appointment the next morning. We saw Dr.

> > Ponseti

> > > > and boy is he just as wonderful as ever!!! He was there

with

> > > > another doctor that he was training (I didn't get his name, I

> was

> > > > busy occuping the kids LOL) But it looks like there is

> > something

> > > > going on with Becky's feet. He decided not to cast her yet,

> as

> > > that

> > > > isn't really going to help? It is something with the

tendons

> in

> > > her

> > > > feet that only happens in about 5-10% of cases. She still

has

> > alot

> > > > of flexiblity, and that is good He upped her hours in

> the

> > FAB

> > > > to 14 (she was down to 10-12) and told me that if I

> > discontinued

> > > > the brace she would surely relapse. I assured him that we

> have

> > > come

> > > > this far in treatment we are not about to stop following the

> > > doctors

> > > > orders now! LOL He wants to closely monitor her and I

guess

> he

> > > is

> > > > going to decide next year if she is going to need the ATTT or

> > > not.

> > > > I am real sketchy on all of the particulairs as I was there

> with

> > > the

> > > > 2 kids alone, and they were up to no good LOL But Dr.

> Ponseti

> > as

> > > > well as the doctor that was there consulting/training with

him

> > were

> > > a

> > > > very puzzled by her feet and spent a great deal of time with

> > her.

> > > I

> > > > am going to email him next week to get all of the information

> I

> > can

> > > > about what is going on, it will be better for me I think to

> have

> > it

> > > > all in writing.

> > > > Sorry this has turned into such a long post. I will keep you

> all

> > > > updated as I find things out.

> > > >

> > > > and Becky 2 1/2, bilateral clubfoot

[Guest guest]

,

I just wanted to drop you a note to say thanks for the update on

Becky. I hope that staying in the brace will do the trick, and you

can put the worry behind you very soon. Hang in there and keep us

posted!

& (3-16-00)

left clubfoot