Re: Back from Iowa: Update on Kavan & regression in toddlers...

April 12, 2004

Tina,

I'm so happy that Kavan's feet look great and that no tenotomy was

needed and NO surgery! How great is that?!? I'm glad your trip

there and back was uneventful and that you are able to have the

casts removed locally.

I thank you for your story, because it is a reminder to myself and

my husband that our diligence will pay off- and that removing the

DBB early is hardly worth it! You're right, that it does become a

routine - we've never swayed from this routine, and for Zach the DBB

means sleep. I'm sure there are others on this board that will learn

through your efforts.

Congrats again on the great news!

Holly

Zachary 7/27/02

Unilateral Right Clubfoot

Treated by Dr. Ponseti

14 hrs/day DBB

-- In nosurgery4clubfoot , " mommaof8kids "

wrote:

> Hello all! It was a quick trip, Kavan and I left Indiana Thursday

at

> 1PM, made it to Iowa in 7 hours, slept at Best Western Canterbury

Inn

> and we were with " Papa Ponseti " (as we have affectionately always

> called him)at 10AM on Friday.

> A quick update if you missed our message a few weeks ago. Kavan

was

> successfully treated as infant by DR. P. We quit wearing the FAB

> about a month before his 3rd b-day ( due to bad advice by a local

> physician, and a momma of 8 that was too lazy to take him to Iowa

> like i SHOULD have!). Kavan was born with bilateral cf, with the

> right foot being more severe than the left. When he regressed, the

> right foot was much worse than the left.

> Two weeks ago, Dr. P. gave us little hope that casting alone would

> correct the severity of the regression, esp. in the right foot.

He

> felt sure Kavan would need another tenotomy in the right foot

(after

> at least 3 castings) and gave us a 50% chance that he would still

> need the tendon surgery.

> Well... when Dr. P. saw his feet and saw him stand with heels FLAT

to

> the floor he burst into a huge grin and with that oh so

unmistakeable

> sweet voice said, " OH, Kavan, your feet look BEAUTIFUL and oh my

> your heel cord has stretched beatifully, I have NEVER seen a

toddler

> respond soooooo well! " . AFter looking up to thank God, I cried on

> Dr. P's shoulder with relief. Kavan's left foot was already

> COMPLETELY corrected and his right was almost there, only

requiring

> ONE more cast!!!!!! Since the right still needed a cast, Dr. P.

had

> to recast the left since he could not go into the FAB right now,

> however, he only casted the left up to the knee to give Kavan a

bit

> more freedom, yet still keep the foot in corrected position.

> Dr. POnseti said Kavan will NOT require the tenotomy afterall, and

> says there is now less than a 5% chance that he will need the

surgery

> either.... praise GOD! He is letting us take him in 3 weeks to a

> local orthopod who traind under him, and allow him to take the

casts

> off and then straight into the FAB 20 hours/day.

> TO THOSE OF YOU WORRIED ABOUT RELAPSE: Obviously Kavan is a

perfect

> example of JUST how important the FAB is. Dr. P. and Dr. Merc.

both

> explained AGAIN to me, that it is only NOW that we have the data

from

> the 'original' kiddos like Kavan (which was when the POnseti

> technique was really making its resurgence)that we can really know

> what we need to about the possiblities of and treatment for

> regression. Kavan will wear his FAB until age 5, and then I will

> STILL have to hear from Dr. P. that he may come out of it. From a

> mother who has been through it all, I would like to make ONE

> suggestion to you mothers of cf infants. The FAB bar becomes as

much

> routine as changing their diaper and putting on pj's for bed.. it

is

> so simple and such a guarantee of not having to watch your toddler

> suffer dragging hip to toe casts around while trying to keep up

with

> his 7 brothers/sisters in our case! Now that we know regression

is

> possible with a large growth spurt between 3-5, why NOT keep the

bar

> on? I only wish I would have been armed with the blessing of the

> knowledge that you all are, as my son would have been better for

it.

> Please let me know if I can answer any questions or have left

> anything out of our story that could help ANYONE.

> With thanks and praise,

> Tina and Kavan (born: 6-25-00 w/ bilateral cf)

April 12, 2004

Tina--

We too are looking at relapse with Jake. I have a question--how did you

come to your decision to try re-casting first? Dr Dietz (who works with

Dr Ponseti) told us that casting alone rarely works with kids age 3+,

and that they usually need to have the ATTT surg eventually. So, we

decided to go for the surgery. But now that it's coming up I'm having

second thoughts!! I'd hate for Jake to have surgery unnecessarily, know

what I mean? I'd love to hear what your thought process was, when

making your decision for Kavan's treatment.

Thanks a bunch,

Kassia

April 12, 2004

Tina-

First off thank you for your detailed follow up and for keeping us informed

on Kavan! I'm so thankful you were able to avoid surgery. My question is

for how long will Kavan need to stay in the DBB 20 hrs a day??? I would

think the cast would be the least uncomfortable of the two (cast/dbb). How

does and almost 4 year old manage along with a DBB for so many hours a day?

I'm thinking of just the general things like going to the bathroom, walking

down stairs, playing outside, going swimming etc. I'm curious more than

anything. I have a 2 year old and when he was in the DBB 23hrs a day he was

only 2-5 months old, so it wasn't an issue. When he started walking he went

down to 16 hours and now he is in it for 12hrs. I'm just curious more than

anything if Kavan will be in the DBB for 20hrs for 3 months and then go down

to 16 etc.

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Back from Iowa: Update on Kavan & regression

>in toddlers...

>Date: Mon, 12 Apr 2004 15:53:30 -0000

>

>Hello all! It was a quick trip, Kavan and I left Indiana Thursday at

>1PM, made it to Iowa in 7 hours, slept at Best Western Canterbury Inn

>and we were with " Papa Ponseti " (as we have affectionately always

>called him)at 10AM on Friday.

>A quick update if you missed our message a few weeks ago. Kavan was

>successfully treated as infant by DR. P. We quit wearing the FAB

>about a month before his 3rd b-day ( due to bad advice by a local

>physician, and a momma of 8 that was too lazy to take him to Iowa

>like i SHOULD have!). Kavan was born with bilateral cf, with the

>right foot being more severe than the left. When he regressed, the

>right foot was much worse than the left.

>Two weeks ago, Dr. P. gave us little hope that casting alone would

>correct the severity of the regression, esp. in the right foot. He

>felt sure Kavan would need another tenotomy in the right foot (after

>at least 3 castings) and gave us a 50% chance that he would still

>need the tendon surgery.

>Well... when Dr. P. saw his feet and saw him stand with heels FLAT to

>the floor he burst into a huge grin and with that oh so unmistakeable

>sweet voice said, " OH, Kavan, your feet look BEAUTIFUL and oh my

>your heel cord has stretched beatifully, I have NEVER seen a toddler

>respond soooooo well! " . AFter looking up to thank God, I cried on

>Dr. P's shoulder with relief. Kavan's left foot was already

>COMPLETELY corrected and his right was almost there, only requiring

>ONE more cast!!!!!! Since the right still needed a cast, Dr. P. had

>to recast the left since he could not go into the FAB right now,

>however, he only casted the left up to the knee to give Kavan a bit

>more freedom, yet still keep the foot in corrected position.

>Dr. POnseti said Kavan will NOT require the tenotomy afterall, and

>says there is now less than a 5% chance that he will need the surgery

>either.... praise GOD! He is letting us take him in 3 weeks to a

>local orthopod who traind under him, and allow him to take the casts

>off and then straight into the FAB 20 hours/day.

>TO THOSE OF YOU WORRIED ABOUT RELAPSE: Obviously Kavan is a perfect

>example of JUST how important the FAB is. Dr. P. and Dr. Merc. both

>explained AGAIN to me, that it is only NOW that we have the data from

>the 'original' kiddos like Kavan (which was when the POnseti

>technique was really making its resurgence)that we can really know

>what we need to about the possiblities of and treatment for

>regression. Kavan will wear his FAB until age 5, and then I will

>STILL have to hear from Dr. P. that he may come out of it. From a

>mother who has been through it all, I would like to make ONE

>suggestion to you mothers of cf infants. The FAB bar becomes as much

>routine as changing their diaper and putting on pj's for bed.. it is

>so simple and such a guarantee of not having to watch your toddler

>suffer dragging hip to toe casts around while trying to keep up with

>his 7 brothers/sisters in our case! Now that we know regression is

>possible with a large growth spurt between 3-5, why NOT keep the bar

>on? I only wish I would have been armed with the blessing of the

>knowledge that you all are, as my son would have been better for it.

>Please let me know if I can answer any questions or have left

>anything out of our story that could help ANYONE.

>With thanks and praise,

>Tina and Kavan (born: 6-25-00 w/ bilateral cf)

>

_________________________________________________________________

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April 13, 2004

Hi Tina,

That's great news about Kavan. It's wonderful that you can probably avoid

the surgery.

I would answer the end of your email, about why not to keep the bar on, that

in our case Emma was removed from the bar because as a loose ligamented kid

she was remaining over-corrected despite walking for over 6 months. So we

were all worried (even Dr. P) that she should come out early to allow her

foot to go to normal. Of course she quickly relapsed, and now we know these

kids should only have the bar rotation decreased instead of removing the

bar.

The good news is that this info is spreading fast with the Internet and

groups like this, so that even if a local ortho says it's ok to remove the

FAB, the parents should think about the cost of keeping it on vs the trauma

of surgery/more castings.

-

Back from Iowa: Update on Kavan &

regression in toddlers...

Hello all! It was a quick trip, Kavan and I left Indiana Thursday at

1PM, made it to Iowa in 7 hours, slept at Best Western Canterbury Inn

and we were with " Papa Ponseti " (as we have affectionately always

called him)at 10AM on Friday.

A quick update if you missed our message a few weeks ago. Kavan was

successfully treated as infant by DR. P. We quit wearing the FAB

about a month before his 3rd b-day ( due to bad advice by a local

physician, and a momma of 8 that was too lazy to take him to Iowa

like i SHOULD have!). Kavan was born with bilateral cf, with the

right foot being more severe than the left. When he regressed, the

right foot was much worse than the left.

Two weeks ago, Dr. P. gave us little hope that casting alone would

correct the severity of the regression, esp. in the right foot. He

felt sure Kavan would need another tenotomy in the right foot (after

at least 3 castings) and gave us a 50% chance that he would still

need the tendon surgery.

Well... when Dr. P. saw his feet and saw him stand with heels FLAT to

the floor he burst into a huge grin and with that oh so unmistakeable

sweet voice said, " OH, Kavan, your feet look BEAUTIFUL and oh my

your heel cord has stretched beatifully, I have NEVER seen a toddler

respond soooooo well! " . AFter looking up to thank God, I cried on

Dr. P's shoulder with relief. Kavan's left foot was already

COMPLETELY corrected and his right was almost there, only requiring

ONE more cast!!!!!! Since the right still needed a cast, Dr. P. had

to recast the left since he could not go into the FAB right now,

however, he only casted the left up to the knee to give Kavan a bit

more freedom, yet still keep the foot in corrected position.

Dr. POnseti said Kavan will NOT require the tenotomy afterall, and

says there is now less than a 5% chance that he will need the surgery

either.... praise GOD! He is letting us take him in 3 weeks to a

local orthopod who traind under him, and allow him to take the casts

off and then straight into the FAB 20 hours/day.

TO THOSE OF YOU WORRIED ABOUT RELAPSE: Obviously Kavan is a perfect

example of JUST how important the FAB is. Dr. P. and Dr. Merc. both

explained AGAIN to me, that it is only NOW that we have the data from

the 'original' kiddos like Kavan (which was when the POnseti

technique was really making its resurgence)that we can really know

what we need to about the possiblities of and treatment for

regression. Kavan will wear his FAB until age 5, and then I will

STILL have to hear from Dr. P. that he may come out of it. From a

mother who has been through it all, I would like to make ONE

suggestion to you mothers of cf infants. The FAB bar becomes as much

routine as changing their diaper and putting on pj's for bed.. it is

so simple and such a guarantee of not having to watch your toddler

suffer dragging hip to toe casts around while trying to keep up with

his 7 brothers/sisters in our case! Now that we know regression is

possible with a large growth spurt between 3-5, why NOT keep the bar

on? I only wish I would have been armed with the blessing of the

knowledge that you all are, as my son would have been better for it.

Please let me know if I can answer any questions or have left

anything out of our story that could help ANYONE.

With thanks and praise,

Tina and Kavan (born: 6-25-00 w/ bilateral cf)

April 13, 2004

Hi

Our daughter is 7.5 months old and has just gone into her DBB's night

times only. Our doctor thinks that she also may have loose ligaments

as although she was difficult to correct at first (especially her

left foot) she has actually gone over corrected.

Can you tell me what to expect in the future? Our Dr. did mention

about her coming out of the boots slightly early, but having read

your email this is concerning me slightly. Her boots are currently

set at 55 degrees rather than the 70 they were set at when she wore

them full-time.

Out Dr. is in contact with Dr. P regularly, so I guess as we should

be o.k. I've read that babies with loose ligaments tend not to

relapse but I'm not sure if this is true or not.

It's early days still at the moment but any advice onwhat to look out

for would be appreciated.

Thanks

Mel (Keely - bilateral c/f 23/08/03)

> Hi Tina,

>

> That's great news about Kavan. It's wonderful that you can

probably avoid

> the surgery.

>

> I would answer the end of your email, about why not to keep the bar

on, that

> in our case Emma was removed from the bar because as a loose

ligamented kid

> she was remaining over-corrected despite walking for over 6

months. So we

> were all worried (even Dr. P) that she should come out early to

allow her

> foot to go to normal. Of course she quickly relapsed, and now we

know these

> kids should only have the bar rotation decreased instead of

removing the

> bar.

>

> The good news is that this info is spreading fast with the Internet

and

> groups like this, so that even if a local ortho says it's ok to

remove the

> FAB, the parents should think about the cost of keeping it on vs

the trauma

> of surgery/more castings.

>

> -

>

> Back from Iowa: Update on Kavan &

> regression in toddlers...

>

> Hello all! It was a quick trip, Kavan and I left Indiana Thursday at

> 1PM, made it to Iowa in 7 hours, slept at Best Western Canterbury

Inn

> and we were with " Papa Ponseti " (as we have affectionately always

> called him)at 10AM on Friday.

> A quick update if you missed our message a few weeks ago. Kavan was

> successfully treated as infant by DR. P. We quit wearing the FAB

> about a month before his 3rd b-day ( due to bad advice by a local

> physician, and a momma of 8 that was too lazy to take him to Iowa

> like i SHOULD have!). Kavan was born with bilateral cf, with the

> right foot being more severe than the left. When he regressed, the

> right foot was much worse than the left.

> Two weeks ago, Dr. P. gave us little hope that casting alone would

> correct the severity of the regression, esp. in the right foot. He

> felt sure Kavan would need another tenotomy in the right foot (after

> at least 3 castings) and gave us a 50% chance that he would still

> need the tendon surgery.

> Well... when Dr. P. saw his feet and saw him stand with heels FLAT

to

> the floor he burst into a huge grin and with that oh so

unmistakeable

> sweet voice said, " OH, Kavan, your feet look BEAUTIFUL and oh my

> your heel cord has stretched beatifully, I have NEVER seen a toddler

> respond soooooo well! " . AFter looking up to thank God, I cried on

> Dr. P's shoulder with relief. Kavan's left foot was already

> COMPLETELY corrected and his right was almost there, only requiring

> ONE more cast!!!!!! Since the right still needed a cast, Dr. P. had

> to recast the left since he could not go into the FAB right now,

> however, he only casted the left up to the knee to give Kavan a bit

> more freedom, yet still keep the foot in corrected position.

> Dr. POnseti said Kavan will NOT require the tenotomy afterall, and

> says there is now less than a 5% chance that he will need the

surgery

> either.... praise GOD! He is letting us take him in 3 weeks to a

> local orthopod who traind under him, and allow him to take the casts

> off and then straight into the FAB 20 hours/day.

> TO THOSE OF YOU WORRIED ABOUT RELAPSE: Obviously Kavan is a perfect

> example of JUST how important the FAB is. Dr. P. and Dr. Merc.

both

> explained AGAIN to me, that it is only NOW that we have the data

from

> the 'original' kiddos like Kavan (which was when the POnseti

> technique was really making its resurgence)that we can really know

> what we need to about the possiblities of and treatment for

> regression. Kavan will wear his FAB until age 5, and then I will

> STILL have to hear from Dr. P. that he may come out of it. From a

> mother who has been through it all, I would like to make ONE

> suggestion to you mothers of cf infants. The FAB bar becomes as

much

> routine as changing their diaper and putting on pj's for bed.. it is

> so simple and such a guarantee of not having to watch your toddler

> suffer dragging hip to toe casts around while trying to keep up with

> his 7 brothers/sisters in our case! Now that we know regression is

> possible with a large growth spurt between 3-5, why NOT keep the bar

> on? I only wish I would have been armed with the blessing of the

> knowledge that you all are, as my son would have been better for it.

> Please let me know if I can answer any questions or have left

> anything out of our story that could help ANYONE.

> With thanks and praise,

> Tina and Kavan (born: 6-25-00 w/ bilateral cf)

>

April 13, 2004