Kayleigh's Story and a big Thank you!!

[Guest guest]

Hello everybody! First of all, I have to say thanks so much for all

of the support you have given me over the last 17 months. This is

my first post, but that does not mean I have not been

here " lurking. " Without you, I might not have made it! THANK YOU!!

Kayleigh is now 17 months old and she was born with severe bilateral

club foot. I had no idea until she was born, so it was quite a

surprise, but I am glad I did not know. Anyhow, we saw the

recommended orthopedist and had two options – surgery or the Ponseti

method. Like all of you, I did not want my baby to have to go

through surgery and we chose the Ponseti method. I left with my 12

day old infant in casts and mom in tears. It was really hard. In

fact it never got easier having the casts placed. Lucky for me, she

only showed discomfort for a day after each casting and adjusted

really well.

At three months old, we received the dreaded Dennis Brown shoes.

What a miserable contraption! Kayleigh was like Houdini. She could

get out of her shoes in a matter of minutes. We had her shoes

modified and tried everything we could think of. Many nights we

would put her shoes back on 4-5 times before we went to bed. It

made for a miserable several months. When talking to my doctor (who

really was not helpful at all during the entire time I was with

him), his answer to my Houdini was " only kids in Iowa (where Dr.

Ponseti is) keep their shoes on. " Talk about major frustration!!

Anyhow, I left that day determined my child was going to keep her

shoes on and be a child in Colorado who succeeded. In the meantime

I was looking for a new doctor.

Throughout this ordeal, I wished I lived in Salt Lake City, Utah

where there is a Shriner's Hospital. The Shriners goal is to make

children walk. They specialize in orthopedics, spinal cord injuries

and burns. The hospital in SLC was an orthopedic hospital. Well as

I did my research I determined they have a clinic in Denver every

other month. What luck, my situation was turning brighter! So in

October (Kayleigh is now one year old) we met with Dr.

Santora and Dr. Pond. They considered Kayleigh " failed "

club foot treatment. Talk about a devastating moment in my life.

My only child " failed. " But nevertheless, they had a very

optimistic outlook and were armed with a new treatment plan. They

were going to start the Ponseti Method over and try it again. Three

days later I was on a plane to SLC for our first casting.

This casting appointment was so much better than any of the other.

Kayleigh would scream like we were amputating an appendage every

time she was casted. Dr. Santora determined if a child is screaming

and thrashing around while being casted, the casting is not all that

great. He suggested many other alternatives to keeping her calm

(remember she is a very opinioned one year old). I was still

nursing her at the time and nursed her while she was having her

casts done. It worked wonderfully. She never made a peep! What a

relief, the memories of her previous reminded us of the misery

encountered.

After six weeks of flying to SLC, she had the tenotomy for the

second time. Scary because this time she did have to have general

anesthesia instead of done under a local. Plus we had to stay in

the hospital overnight for monitoring. Much different the second

time around. Anyhow, in January her final casts were taken off and

her feet look BEAUTIFUL!! She wears AFO's at night...Dr. Santora

determined the DBB was not a good fit for Kayleigh and due to her

determination; we risked her feet failing again.

It has been two months since she came out of her casts and her feet

still look great. She is starting to walk now and it is a beautiful

thing to watch. We head to SLC for a follow up appointment in two

weeks.

My moral of the story is if you are not comfortable with your

doctor – find a new one!! A great doctor makes all the difference.

Secondly if you do not live in Iowa or have access to Dr. Ponseti,

look into the Shriner's Hospital – www.shrinershg.org. Almost every

place in the country has a Temple within a short distance and

somebody who can help. The application process is painless and the

best thing is the care is FREE!! In all of my trips to SLC, I have

had to pay for two. The local temple helped me with all of my

costs. These men dedicate their lives to helping children. Many of

these doctors have dedicated their lives to certain conditions – Dr.

Santora's specialty is Clubfoot. He is redesigning the DBB to be

more user friendly.

I could go on and on in regards to the Shrine Hospital and how great

the care is and the dedication exhibited, but I will save you all.

If you would like more information, please contact me at

jlevans13@... and I would be more than happy to help!

Again, thanks to everybody who has posted questions, helpful tidbits

and happy stories throughout the last 18 months – you have made my

life easier in regards to Kayleigh's clubfoot! I appreciate

everybody sharing your stories and good luck to each and every one

of you. I will continue to come back because I am sure more

questions will arise as my munchkin gets bigger! Thanks so much!!

[Guest guest]

Thank you very much for sharing your story and Kayleigh's story! As

someone who is newer to this process it is so encouraging to hear success

stories

like Kayleigh's! What a wonderful advocate you were for your daughter and her

treatment!

Thank you!

and Mallory (23/7 's---we started yesterday!!!)

[Guest guest]

Jen,

What a great positive story! Thanks for sharing. It's good to know

that Dr. Santora was able to correct Kayleigh's feet and that she is

doing so well now.

The one thing that concerns me is that he is having you use AFO's.

AFO's are just such a gamble because they can't hold the outward

rotation of the foot and so often allow relapses. Have you considered

getting the Ponseti/ brace, or even the Dobbs brace? I know

that some Shriners have been hesitant to use the P/M brace due to the

expense that they would incur but it is sooo good for these feet that

have trouble with the traditional Markell shoes. There is also the

brace that Dr. Dobbs in St. Louis has designed that you and

Dr. Santora might be interested in - it's modified AFO's mounted to an

articulating bar. The brace has a solid bar with pivot points at each

end that allow the baby to move his/her feet separately from each

other, and the AFO's are attached to it the same as a regular FAB,

thus keeping the feet turned out to the appropriate 70 degrees.

There's a link to a document about the brace here:

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

/dobbs_brace_guide2.pdf

The brace is not widely available yet, but because Dr. Dobbs is

affiliated with Shriners it should not be too difficult to arrange to

get one from St. Louis, or for the StL Shriners to work out something

with the SLC Shriners orthotics people.

I definitely think it would be worth it to look into one of these

options to ensure Kayleigh's continued success!

Glad you delurked and shared your story!

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

>

> Hello everybody! First of all, I have to say thanks so much for all

> of the support you have given me over the last 17 months. This is

> my first post, but that does not mean I have not been

> here " lurking. " Without you, I might not have made it! THANK YOU!!

>

> Kayleigh is now 17 months old and she was born with severe bilateral

> club foot. I had no idea until she was born, so it was quite a

> surprise, but I am glad I did not know. Anyhow, we saw the

> recommended orthopedist and had two options – surgery or the Ponseti

> method. Like all of you, I did not want my baby to have to go

> through surgery and we chose the Ponseti method. I left with my 12

> day old infant in casts and mom in tears. It was really hard. In

> fact it never got easier having the casts placed. Lucky for me, she

> only showed discomfort for a day after each casting and adjusted

> really well.

>

> At three months old, we received the dreaded Dennis Brown shoes.

> What a miserable contraption! Kayleigh was like Houdini. She could

> get out of her shoes in a matter of minutes. We had her shoes

> modified and tried everything we could think of. Many nights we

> would put her shoes back on 4-5 times before we went to bed. It

> made for a miserable several months. When talking to my doctor (who

> really was not helpful at all during the entire time I was with

> him), his answer to my Houdini was " only kids in Iowa (where Dr.

> Ponseti is) keep their shoes on. " Talk about major frustration!!

> Anyhow, I left that day determined my child was going to keep her

> shoes on and be a child in Colorado who succeeded. In the meantime

> I was looking for a new doctor.

>

> Throughout this ordeal, I wished I lived in Salt Lake City, Utah

> where there is a Shriner's Hospital. The Shriners goal is to make

> children walk. They specialize in orthopedics, spinal cord injuries

> and burns. The hospital in SLC was an orthopedic hospital. Well as

> I did my research I determined they have a clinic in Denver every

> other month. What luck, my situation was turning brighter! So in

> October (Kayleigh is now one year old) we met with Dr.

> Santora and Dr. Pond. They considered Kayleigh " failed "

> club foot treatment. Talk about a devastating moment in my life.

> My only child " failed. " But nevertheless, they had a very

> optimistic outlook and were armed with a new treatment plan. They

> were going to start the Ponseti Method over and try it again. Three

> days later I was on a plane to SLC for our first casting.

>

> This casting appointment was so much better than any of the other.

> Kayleigh would scream like we were amputating an appendage every

> time she was casted. Dr. Santora determined if a child is screaming

> and thrashing around while being casted, the casting is not all that

> great. He suggested many other alternatives to keeping her calm

> (remember she is a very opinioned one year old). I was still

> nursing her at the time and nursed her while she was having her

> casts done. It worked wonderfully. She never made a peep! What a

> relief, the memories of her previous reminded us of the misery

> encountered.

>

> After six weeks of flying to SLC, she had the tenotomy for the

> second time. Scary because this time she did have to have general

> anesthesia instead of done under a local. Plus we had to stay in

> the hospital overnight for monitoring. Much different the second

> time around. Anyhow, in January her final casts were taken off and

> her feet look BEAUTIFUL!! She wears AFO's at night...Dr. Santora

> determined the DBB was not a good fit for Kayleigh and due to her

> determination; we risked her feet failing again.

>

> It has been two months since she came out of her casts and her feet

> still look great. She is starting to walk now and it is a beautiful

> thing to watch. We head to SLC for a follow up appointment in two

> weeks.

>

> My moral of the story is if you are not comfortable with your

> doctor – find a new one!! A great doctor makes all the difference.

> Secondly if you do not live in Iowa or have access to Dr. Ponseti,

> look into the Shriner's Hospital – www.shrinershg.org. Almost every

> place in the country has a Temple within a short distance and

> somebody who can help. The application process is painless and the

> best thing is the care is FREE!! In all of my trips to SLC, I have

> had to pay for two. The local temple helped me with all of my

> costs. These men dedicate their lives to helping children. Many of

> these doctors have dedicated their lives to certain conditions – Dr.

> Santora's specialty is Clubfoot. He is redesigning the DBB to be

> more user friendly.

>

> I could go on and on in regards to the Shrine Hospital and how great

> the care is and the dedication exhibited, but I will save you all.

> If you would like more information, please contact me at

> jlevans13@... and I would be more than happy to help!

>

> Again, thanks to everybody who has posted questions, helpful tidbits

> and happy stories throughout the last 18 months – you have made my

> life easier in regards to Kayleigh's clubfoot! I appreciate

> everybody sharing your stories and good luck to each and every one

> of you. I will continue to come back because I am sure more

> questions will arise as my munchkin gets bigger! Thanks so much!!

>

[Guest guest]

Jen,

I'm glad that you de-lurked to share Kayleigh's story. Stories like

yours about your experiences with your first doctor are part of the

biggest frustrations that I have with the medical community

regarding clubfoot treatment. Clearly, Kayleigh's first doctor was

not using the Ponseti method correctly, even though they led you to

believe that they were. I feel terrible for families like yours who

believe that their child is in capable hands, only to find out

months later that the doctor was not applying the treatment

correctly. It appears that Kayleigh's clubfoot was never corrected

completely by the first doctor, and this is why she wasn't able to

use the FAB (DBB). I am glad that you were able to start over with

another doctor and get her feet finally corrected! Kudos to you for

following your heart and finding another doctor for your baby!

Please note, though, that not all the Shriners hospitals have

doctors who are trained in the Ponseti method. While the Shriners

facilities are wonderful in their efforts to provide excellent

medical care for free, the deciding factor when finding a doctor to

treat clubfoot using the Ponseti method needs to be made based on

the doctor themselves, not the hospital/facility. For example,

mentioned Dr. Dobbs at the Shriners in St. Louis. There are

other doctors at that same hospital who treat clubfoot, but not all

of them use the Ponseti method like Dr. Dobbs does. Similarly, many

hospitals have lots of pediatric orthopaedic surgeons on staff and

typically, they all have different approaches to treating clubfoot.

I don't want to poo-poo your praises for Shriners by any means, I

just want to add the clarification that a parent really needs to

research doctors as individuals when seeking out treatment!

I also would encourage you, as did, to do some additional

research on Kayleigh's bracing options. Dr. Ponseti has called the

AFO useless in combating regression for clubfoot. Some form of FAB

(whether it's the traditional Markell shoes on a bar, the Ponseti

brace or the Dobbs' brace) needs to be worn at night to

prevent relapse. There are a lot of recent publications (medical

research) about the odds of relapse and the importance of the proper

abduction (outward rotation angle) of the feet and the use of an FAB

to prevent it. You can read some of this by clicking the related

links at http://members.tripod.com/ponseti_links-ivil under the

misc. posts section and medical papers section.

I can assure you that if Kayleigh's feet are properly corrected, the

FAB will not be an issue for her. Many families here have had

to " start over " just like you did and introduce or re-introduce the

brace at an older age (over 1 year). We can help you with trying to

accomplish this goal. Otherwise, I fear that Kayleigh's odd of

relapsing are high by only using an AFO, and I can tell by the tone

of your note that you want to do everything you can to prevent her

from regressing! To complicate matters, the AFO is really limited

in keeping the Achilles' stretched, and since Kayleigh already has

had two tenotomies, you probably wouldn't want to risk having to

have another procedure due to the scar tissue. The FAB is the best

way to keep her dorsiflexion adequate.

Do you know what angle of abduction Dr. Santora was able to achieve

with Kayleigh's last cast? Does she have good dorsiflexion after

her second tenotomy? (ability to point toes up toward the shin)

I hope you'll consider joining the yahoo groups CFPics and share

pictures of Kayleigh's feet during her journey to correction with

us! We're glad you're here and hope you'll continue to post updates

and keep us informed on her progress!

Regards,

& (3-16-00, left clubfoot)

>

> Hello everybody! First of all, I have to say thanks so much for

all

> of the support you have given me over the last 17 months. This is

> my first post, but that does not mean I have not been

> here " lurking. " Without you, I might not have made it! THANK

YOU!!

>

> Kayleigh is now 17 months old and she was born with severe

bilateral

> club foot. I had no idea until she was born, so it was quite a

> surprise, but I am glad I did not know. Anyhow, we saw the

> recommended orthopedist and had two options – surgery or the

Ponseti

> method. Like all of you, I did not want my baby to have to go

> through surgery and we chose the Ponseti method. I left with my

12

> day old infant in casts and mom in tears. It was really hard. In

> fact it never got easier having the casts placed. Lucky for me,

she

> only showed discomfort for a day after each casting and adjusted

> really well.

>

> At three months old, we received the dreaded Dennis Brown shoes.

> What a miserable contraption! Kayleigh was like Houdini. She

could

> get out of her shoes in a matter of minutes. We had her shoes

> modified and tried everything we could think of. Many nights we

> would put her shoes back on 4-5 times before we went to bed. It

> made for a miserable several months. When talking to my doctor

(who

> really was not helpful at all during the entire time I was with

> him), his answer to my Houdini was " only kids in Iowa (where Dr.

> Ponseti is) keep their shoes on. " Talk about major frustration!!

> Anyhow, I left that day determined my child was going to keep her

> shoes on and be a child in Colorado who succeeded. In the

meantime

> I was looking for a new doctor.

>

> Throughout this ordeal, I wished I lived in Salt Lake City, Utah

> where there is a Shriner's Hospital. The Shriners goal is to make

> children walk. They specialize in orthopedics, spinal cord

injuries

> and burns. The hospital in SLC was an orthopedic hospital. Well

as

> I did my research I determined they have a clinic in Denver every

> other month. What luck, my situation was turning brighter! So in

> October (Kayleigh is now one year old) we met with Dr.

> Santora and Dr. Pond. They considered Kayleigh " failed "

> club foot treatment. Talk about a devastating moment in my life.

> My only child " failed. " But nevertheless, they had a very

> optimistic outlook and were armed with a new treatment plan. They

> were going to start the Ponseti Method over and try it again.

Three

> days later I was on a plane to SLC for our first casting.

>

> This casting appointment was so much better than any of the

other.

> Kayleigh would scream like we were amputating an appendage every

> time she was casted. Dr. Santora determined if a child is

screaming

> and thrashing around while being casted, the casting is not all

that

> great. He suggested many other alternatives to keeping her calm

> (remember she is a very opinioned one year old). I was still

> nursing her at the time and nursed her while she was having her

> casts done. It worked wonderfully. She never made a peep! What

a

> relief, the memories of her previous reminded us of the misery

> encountered.

>

> After six weeks of flying to SLC, she had the tenotomy for the

> second time. Scary because this time she did have to have general

> anesthesia instead of done under a local. Plus we had to stay in

> the hospital overnight for monitoring. Much different the second

> time around. Anyhow, in January her final casts were taken off

and

> her feet look BEAUTIFUL!! She wears AFO's at night...Dr. Santora

> determined the DBB was not a good fit for Kayleigh and due to her

> determination; we risked her feet failing again.

>

> It has been two months since she came out of her casts and her

feet

> still look great. She is starting to walk now and it is a

beautiful

> thing to watch. We head to SLC for a follow up appointment in two

> weeks.

>

> My moral of the story is if you are not comfortable with your

> doctor – find a new one!! A great doctor makes all the

difference.

> Secondly if you do not live in Iowa or have access to Dr. Ponseti,

> look into the Shriner's Hospital – www.shrinershg.org. Almost

every

> place in the country has a Temple within a short distance and

> somebody who can help. The application process is painless and

the

> best thing is the care is FREE!! In all of my trips to SLC, I

have

> had to pay for two. The local temple helped me with all of my

> costs. These men dedicate their lives to helping children. Many

of

> these doctors have dedicated their lives to certain conditions –

Dr.

> Santora's specialty is Clubfoot. He is redesigning the DBB to be

> more user friendly.

>

> I could go on and on in regards to the Shrine Hospital and how

great

> the care is and the dedication exhibited, but I will save you

all.

> If you would like more information, please contact me at

> jlevans13@... and I would be more than happy to help!

>

> Again, thanks to everybody who has posted questions, helpful

tidbits

> and happy stories throughout the last 18 months – you have made my

> life easier in regards to Kayleigh's clubfoot! I appreciate

> everybody sharing your stories and good luck to each and every one

> of you. I will continue to come back because I am sure more

> questions will arise as my munchkin gets bigger! Thanks so much!!

>

[Guest guest]

Congratulations on the successful outcome! And, good for you for

sticking in there for your little one.

I'm fairly new to the board. I joined two weeks after my daughter

was born with bilateral clubfoot and I'm so glad I did.

Thanks for sharing and have fun with Kayleigh.

mommy to -J'nee, bcf, born 01.07.06

>

> Hello everybody! First of all, I have to say thanks so much for

all

> of the support you have given me over the last 17 months. This is

> my first post, but that does not mean I have not been

> here " lurking. " Without you, I might not have made it! THANK

YOU!!

>

> Kayleigh is now 17 months old and she was born with severe

bilateral

> club foot. I had no idea until she was born, so it was quite a

> surprise, but I am glad I did not know. Anyhow, we saw the

> recommended orthopedist and had two options – surgery or the

Ponseti

> method. Like all of you, I did not want my baby to have to go

> through surgery and we chose the Ponseti method. I left with my

12

> day old infant in casts and mom in tears. It was really hard. In

> fact it never got easier having the casts placed. Lucky for me,

she

> only showed discomfort for a day after each casting and adjusted

> really well.

>

> At three months old, we received the dreaded Dennis Brown shoes.

> What a miserable contraption! Kayleigh was like Houdini. She

could

> get out of her shoes in a matter of minutes. We had her shoes

> modified and tried everything we could think of. Many nights we

> would put her shoes back on 4-5 times before we went to bed. It

> made for a miserable several months. When talking to my doctor

(who

> really was not helpful at all during the entire time I was with

> him), his answer to my Houdini was " only kids in Iowa (where Dr.

> Ponseti is) keep their shoes on. " Talk about major frustration!!

> Anyhow, I left that day determined my child was going to keep her

> shoes on and be a child in Colorado who succeeded. In the

meantime

> I was looking for a new doctor.

>

> Throughout this ordeal, I wished I lived in Salt Lake City, Utah

> where there is a Shriner's Hospital. The Shriners goal is to make

> children walk. They specialize in orthopedics, spinal cord

injuries

> and burns. The hospital in SLC was an orthopedic hospital. Well

as

> I did my research I determined they have a clinic in Denver every

> other month. What luck, my situation was turning brighter! So in

> October (Kayleigh is now one year old) we met with Dr.

> Santora and Dr. Pond. They considered Kayleigh " failed "

> club foot treatment. Talk about a devastating moment in my life.

> My only child " failed. " But nevertheless, they had a very

> optimistic outlook and were armed with a new treatment plan. They

> were going to start the Ponseti Method over and try it again.

Three

> days later I was on a plane to SLC for our first casting.

>

> This casting appointment was so much better than any of the

other.

> Kayleigh would scream like we were amputating an appendage every

> time she was casted. Dr. Santora determined if a child is

screaming

> and thrashing around while being casted, the casting is not all

that

> great. He suggested many other alternatives to keeping her calm

> (remember she is a very opinioned one year old). I was still

> nursing her at the time and nursed her while she was having her

> casts done. It worked wonderfully. She never made a peep! What

a

> relief, the memories of her previous reminded us of the misery

> encountered.

>

> After six weeks of flying to SLC, she had the tenotomy for the

> second time. Scary because this time she did have to have general

> anesthesia instead of done under a local. Plus we had to stay in

> the hospital overnight for monitoring. Much different the second

> time around. Anyhow, in January her final casts were taken off

and

> her feet look BEAUTIFUL!! She wears AFO's at night...Dr. Santora

> determined the DBB was not a good fit for Kayleigh and due to her

> determination; we risked her feet failing again.

>

> It has been two months since she came out of her casts and her

feet

> still look great. She is starting to walk now and it is a

beautiful

> thing to watch. We head to SLC for a follow up appointment in two

> weeks.

>

> My moral of the story is if you are not comfortable with your

> doctor – find a new one!! A great doctor makes all the

difference.

> Secondly if you do not live in Iowa or have access to Dr. Ponseti,

> look into the Shriner's Hospital – www.shrinershg.org. Almost

every

> place in the country has a Temple within a short distance and

> somebody who can help. The application process is painless and

the

> best thing is the care is FREE!! In all of my trips to SLC, I

have

> had to pay for two. The local temple helped me with all of my

> costs. These men dedicate their lives to helping children. Many

of

> these doctors have dedicated their lives to certain conditions –

Dr.

> Santora's specialty is Clubfoot. He is redesigning the DBB to be

> more user friendly.

>

> I could go on and on in regards to the Shrine Hospital and how

great

> the care is and the dedication exhibited, but I will save you

all.

> If you would like more information, please contact me at

> jlevans13@... and I would be more than happy to help!

>

> Again, thanks to everybody who has posted questions, helpful

tidbits

> and happy stories throughout the last 18 months – you have made my

> life easier in regards to Kayleigh's clubfoot! I appreciate

> everybody sharing your stories and good luck to each and every one

> of you. I will continue to come back because I am sure more

> questions will arise as my munchkin gets bigger! Thanks so much!!

>