Re: hi...new to the group...here's our story!!!!!

June 11, 2006

Where are you in Ohio? Who is your Doctor? We are also in Ohio and Kelsey

sees Dr. Diane Von Stein in Cincinnati. The first few weeks were somewhat

trying. My biggest advice is to make sure that you stick with it and be very

consistent in the brace wear. We have always insisted on the wear and now it

is just not an issue with our daughter who is 2 1/2. Good luck with it all

and we are glad that you are with us.

Jenni

nateskat44805 wrote:

We have a 3 month old son. He was born with bilateral clubfeet, and

has been treated for the past 13 feets with casts, and has recently

had the tendon release surgery. Just today he has had the FAB DBB

braces put on. He needs to wear these for 23 hours a day for

the first 3 months, an hour a day off to get a bath for cleaning the

braces, and to give him a bit of a break,etc. Then after that , he

wears them at naptimes and bedtimes only.

I just now got a pamphlet leading me to this group...so any advice on

getting me through this first 2 weeks of adjustment with the brace

would be greatly appreciated....as the dr said ti wouldb e very trying!

We are from Ohio.

Thanx for the support that i know i am going to recieve from this group!

Kaitlyn Hood

Jenni-

Mom to (10/31/01) and Kelsey (11/7/03)happy girl in FAB nights only for

left clubfoot.

__________________________________________________

June 11, 2006

Hello and welcome to the group!

Thirteen weeks of castings seems like a long time, Im' sorry. Can we ask who is

your doctor?

Adjustment depends a lot on the child's personality I think but you can help him

along by teaching him to kick both feet together and in general keeping them

distracted with play and attention.

After the initial 23 hour phase though, it is better to gradually reduce the

hours over months rather than just pop down to night wear. Ponseti recommends

this gradual reduction to ward off the chances of relapse. It goes more like

23, 18, 16, 14, 12.... through the first year or year and a half then remains at

the 12 mark until approx. age four years old. This doesn't interfer with

development if done correctly. My son is 3 months/3 days old and started

rolling over on his own yesterday wearing his FAB. My other did too and

crawled at 6 months old, wearing his FAB. He began to walk at 14 months old. I

just mean wearing the brace via Ponseti Protocol does not slow them down

developmentally.

Weaning him out of the brace too early can end up setting you back in the long

run if he should end up needing re-casted to correct the damage done from not

wearing the brace long enough. I suggest you visit the links and files of this

group for a lot more detailed information regarding bracing protocol, tips,

tricks, etc. to make it easier on you and your child.

ee

Mother of 3 Clubfooted Sons:

- Bilateral Club Feet April 1998

Everett - Bilateral Club Feet September 2003

Garrison - Bilateral Club Feet March 2006

hi...new to the group...here's our story!!!!!

We have a 3 month old son. He was born with bilateral clubfeet, and

has been treated for the past 13 feets with casts, and has recently

had the tendon release surgery. Just today he has had the FAB DBB

braces put on. He needs to wear these for 23 hours a day for

the first 3 months, an hour a day off to get a bath for cleaning the

braces, and to give him a bit of a break,etc. Then after that , he

wears them at naptimes and bedtimes only.

I just now got a pamphlet leading me to this group...so any advice on

getting me through this first 2 weeks of adjustment with the brace

would be greatly appreciated....as the dr said ti wouldb e very trying!

We are from Ohio.

Thanx for the support that i know i am going to recieve from this group!

Kaitlyn Hood

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June 11, 2006

Hi,

Our doctor is Dr Mark Adamcyzk of AKron Ohio. He had his 1st set of

casts when he was 2 weeks old. And just got his braces this past

friday. He seems to be adjusting ok to them so far. As long as we

keep him happy with alot of play times, and keeping him distracted,

and showing him how he can move him legs now.

YEah, after the 23 hours a day is over, then itll go to naptimes, and

bedtimes, then down to maybe one naptime and bedtime, then just at

bedtime. The dr said eventuall he'll get to where he will wnat to

wear them at naptime and bedtime and wont mind them.

Rright now he has them adjusted to 70% and 30%. He has bilateral

clubfeet. One lady didnt think this was right at all, but they are

trying a new technique on him...still part of the ponceti treatment.

They've done it on a few others like Kaden and it has worked well. So

we're praying that this too will work. Its so hard to know who to

believe and what to believe because u have the doctor saying one

thing, who u hope knows what he is talking about since he went to

school for this sort of thing, and then so many people out there

telling thier stories and opinions. So it gets a bit stressing. All

im really looking for is tips on how to get him adjusted to the

braces, daily living with them, etc....not the specifics on the

degrees they need to be rotated at, etc. I will let the professionals

with the certificates handle that...they've done a superb job so far.

Thanx for all your help thus far! And i will continue to be a part of

the group and seek support and advice as needed.

Kaitlyn Hood

>

> Hello and welcome to the group!

>

> Thirteen weeks of castings seems like a long time, Im' sorry. Can

we ask who is your doctor?

>

> Adjustment depends a lot on the child's personality I think but you

can help him along by teaching him to kick both feet together and in

general keeping them distracted with play and attention.

>

> After the initial 23 hour phase though, it is better to gradually

reduce the hours over months rather than just pop down to night wear.

Ponseti recommends this gradual reduction to ward off the chances of

relapse. It goes more like 23, 18, 16, 14, 12.... through the first

year or year and a half then remains at the 12 mark until approx. age

four years old. This doesn't interfer with development if done

correctly. My son is 3 months/3 days old and started rolling over on

his own yesterday wearing his FAB. My other did too and crawled at 6

months old, wearing his FAB. He began to walk at 14 months old. I

just mean wearing the brace via Ponseti Protocol does not slow them

down developmentally.

>

> Weaning him out of the brace too early can end up setting you back

in the long run if he should end up needing re-casted to correct the

damage done from not wearing the brace long enough. I suggest you

visit the links and files of this group for a lot more detailed

information regarding bracing protocol, tips, tricks, etc. to make it

easier on you and your child.

>

> ee

> Mother of 3 Clubfooted Sons:

> - Bilateral Club Feet April 1998

> Everett - Bilateral Club Feet September 2003

> Garrison - Bilateral Club Feet March 2006

> hi...new to the group...here's our

story!!!!!

>

> We have a 3 month old son. He was born with bilateral clubfeet, and

> has been treated for the past 13 feets with casts, and has recently

> had the tendon release surgery. Just today he has had the FAB DBB

> braces put on. He needs to wear these for 23 hours a day for

> the first 3 months, an hour a day off to get a bath for cleaning the

> braces, and to give him a bit of a break,etc. Then after that , he

> wears them at naptimes and bedtimes only.

> I just now got a pamphlet leading me to this group...so any advice on

> getting me through this first 2 weeks of adjustment with the brace

> would be greatly appreciated....as the dr said ti wouldb e very

trying!

>

> We are from Ohio.

>

> Thanx for the support that i know i am going to recieve from this

group!

>

> Kaitlyn Hood

>

------------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date:

6/9/2006

>

June 12, 2006

Hi Kaitlyn,

Congratulations on your son, and welcome to the group! Glad to have

you with us. Here are a few things to get you started, this site is a

comprehensive source of information with lots of tips for parents,

including the best of resources for the stage you are at now - the FAB

Tips Document! This site has a lot of reference material about

clubfoot and the Ponseti method, as well as a " check list " for parents

to help you know that you are getting the best possible care for your

child's clubfeet.

http://members.tripod.com/ponseti_links-ivil/index.html

http://members.tripod.com/ponseti_links-ivil/id13.html

http://members.tripod.com/ponseti_links-ivil/sitebuildercontent/sitebuilderfiles\

/fab_tips_10_05_05.pdf

Okay, I know you said you didn't want a lot of people telling you what

to do about the specifics of how his brace should be set up, but can I

just tell you/ask you a couple things about the degrees without

sounding like a big know-it-all? : ) I would really be curious to

know what " new technique " (and why) they are trying with the shoes set

at different angles like this. There have been serveral studies done

showing that the 70 degrees is the best for maintaining proper

correction, one of which was presented at this year's AAOS meeting,

the abstract of which can be found here:

http://www3.aaos.org/anmeet2006/podium/podium.cfm?Pevent=244

Not only is the brace normally set at 70 degrees of outward rotation,

but the last cast should have been as well. There are two reasons for

this, as mentioned above, it is a proven technique for preventing the

chance of relapse, but also, it is important to give the foot normal

range of motion. I had clubfoot as a child and this technique was not

used in my case. I now have limited range of motion in the outward

rotation of my ankle.

There are differing schools of thought on this principle but I do

believe that Dr. Ponseti's 50+ year track record and research does

make him the authority on the subject. There certainly are cases,

varying based on each child, in which he himself might not place the

child's feet at a full 70 degrees of abduction in the brace, but the

last cast should always be at 70 for each clubfoot to obtain that

proper range of motion.

I agree with what you said about the professionals hopefully knowing

what they are talking about (even though they don't always), but I

also believe it is in each parent's best interest to be as informed as

possible on the subjects that are affecting his/her child's health.

So, what I'm really trying to say is that you can take this

information and do with it what you wish, whether you choose to ask

you doctor further questions or not is up to you, but now you have

this knowledge. And that's what we're all here for! ; )

Hope this is helpful, and again, welcome to the group!

> >

> > Hello and welcome to the group!

> >

> > Thirteen weeks of castings seems like a long time, Im' sorry. Can

> we ask who is your doctor?

> >

> > Adjustment depends a lot on the child's personality I think but you

> can help him along by teaching him to kick both feet together and in

> general keeping them distracted with play and attention.

> >

> > After the initial 23 hour phase though, it is better to gradually

> reduce the hours over months rather than just pop down to night wear.

> Ponseti recommends this gradual reduction to ward off the chances of

> relapse. It goes more like 23, 18, 16, 14, 12.... through the first

> year or year and a half then remains at the 12 mark until approx. age

> four years old. This doesn't interfer with development if done

> correctly. My son is 3 months/3 days old and started rolling over on

> his own yesterday wearing his FAB. My other did too and crawled at 6

> months old, wearing his FAB. He began to walk at 14 months old. I

> just mean wearing the brace via Ponseti Protocol does not slow them

> down developmentally.

> >

> > Weaning him out of the brace too early can end up setting you back

> in the long run if he should end up needing re-casted to correct the

> damage done from not wearing the brace long enough. I suggest you

> visit the links and files of this group for a lot more detailed

> information regarding bracing protocol, tips, tricks, etc. to make it

> easier on you and your child.

> >

> > ee

> > Mother of 3 Clubfooted Sons:

> > - Bilateral Club Feet April 1998

> > Everett - Bilateral Club Feet September 2003

> > Garrison - Bilateral Club Feet March 2006

> > hi...new to the group...here's our

> story!!!!!

> >

> > We have a 3 month old son. He was born with bilateral clubfeet, and

> > has been treated for the past 13 feets with casts, and has recently

> > had the tendon release surgery. Just today he has had the FAB DBB

> > braces put on. He needs to wear these for 23 hours a

day for

> > the first 3 months, an hour a day off to get a bath for cleaning the

> > braces, and to give him a bit of a break,etc. Then after that , he

> > wears them at naptimes and bedtimes only.

> > I just now got a pamphlet leading me to this group...so any

advice on

> > getting me through this first 2 weeks of adjustment with the brace

> > would be greatly appreciated....as the dr said ti wouldb e very

> trying!

> >

> > We are from Ohio.

> >

> > Thanx for the support that i know i am going to recieve from this

> group!

> >

> > Kaitlyn Hood

> >

>

------------------------------------------------------------------------------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date:

> 6/9/2006

> >

June 12, 2006

Hi Kaitlyn! My name is and we have a 3 month old daughter,

Brynn, that has club foot on the right and will get her boots

tomorrow and had the Achilles release 2.5 weeks ago, as well. I

think we are getting the Markell shoes, though. We are in central PA

so not too far. At this point I don't have any advice but am glad to

know someone is at the same spot as us! I'm sure we'll be chatting

more in the weeks to come

Knoebel

>

> We have a 3 month old son. He was born with bilateral clubfeet, and

> has been treated for the past 13 feets with casts, and has recently

> had the tendon release surgery. Just today he has had the FAB DBB

> braces put on. He needs to wear these for 23 hours a day

for

> the first 3 months, an hour a day off to get a bath for cleaning the

> braces, and to give him a bit of a break,etc. Then after that , he

> wears them at naptimes and bedtimes only.

> I just now got a pamphlet leading me to this group...so any advice

on

> getting me through this first 2 weeks of adjustment with the brace

> would be greatly appreciated....as the dr said ti wouldb e very

trying!

>

> We are from Ohio.

>

> Thanx for the support that i know i am going to recieve from this

group!

>

> Kaitlyn Hood

>

June 14, 2006

Hi Kaitlyn!

It was great to hear your story...our daughter Brynn just got her DBB

yesterday! She is also 3 months old. She has had 6 regular casts

including one after her tenotomy on her right foot (only her right

side has club foot). She is tolerating the bar well now, the first 8

hours were a pretty unpleasant but she seems okay. The crease in the

bottom of her foot is not gone yet so we go back to Hershey PA (we

live in port PA) in 2 weeks to see the surgeon and she might

get another cast or two to straighten that out. She first saw the

doctor at 5 days old and was casted but after that first cast there

was a pressure sore the size of a nickel on her little foot so we

were out of cast for 3 weeks before starting again. It will be neat

to compare notes with you and we are in the same spot at this point.

Hope all is going well!

>

> We have a 3 month old son. He was born with bilateral clubfeet, and

> has been treated for the past 13 feets with casts, and has recently

> had the tendon release surgery. Just today he has had the FAB DBB

> braces put on. He needs to wear these for 23 hours a day

for

> the first 3 months, an hour a day off to get a bath for cleaning the

> braces, and to give him a bit of a break,etc. Then after that , he

> wears them at naptimes and bedtimes only.

> I just now got a pamphlet leading me to this group...so any advice

on

> getting me through this first 2 weeks of adjustment with the brace

> would be greatly appreciated....as the dr said ti wouldb e very

trying!

>

> We are from Ohio.

>

> Thanx for the support that i know i am going to recieve from this

group!

>

> Kaitlyn Hood

>

June 14, 2006

Kaitlyn,

Hi - I'm sorry I don't have any advice - I found this board searching the

internet because we are expecting a baby in October with bilateral club feet.

Anyway, I noticed you said you were from Ohio - where about? We are in the

Cleveland area - I was wondering what doctor you go to?

Thanks & good luck with the braces!

Lori

traydawg30 wrote: