Re: spina bifida and clubfoot

[Guest guest]

My son has caudal regression syndrome, which has some of the

features of spina bifida. I don't have any info for you, really,

because i am wondering the same things that you are. My son's

clubfeet are being handled by Dr. Jay at duPont in Delaware. Some

people on here don't like Dr. Jay because he does not use Ponseti.

If you find out anything, please let me know. Thanks.

le

www.caringbridge.com/pa/jordan

> I'm a veteran (sort of) to clubfeet. My daughter Rose was born

with a left

> clubfoot in January 99, and she started seeing Dr. Ponseti at 6

months with

> terrific results.

>

> I'm expecting #4, and I'm a little over 25 weeks pregnant. We

recently

> discovered this baby has spina bifida and bilateral clubfeet. I'm

curious of

> whether the Ponseti Method would be beneficial in our case. I

know with spina

> bifida clubfoot does usually require surgery, but my question is

more on the

> level of would the Ponseti Method be better? Also, does anybody

here have

> experience with spina bifida? I'll be looking up other message

boards

> specifically geared toward spina bifida, obviously, so I have more

info, but

> I'd appreciate hearing from you.

>

> I'd appreciate any input. Thank you!

>

> Joy

>

> http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

> __________________________________________________

>

[Guest guest]

My son has caudal regression syndrome, which has some of the

features of spina bifida. I don't have any info for you, really,

because i am wondering the same things that you are. My son's

clubfeet are being handled by Dr. Jay at duPont in Delaware. Some

people on here don't like Dr. Jay because he does not use Ponseti.

If you find out anything, please let me know. Thanks.

le

www.caringbridge.com/pa/jordan

> I'm a veteran (sort of) to clubfeet. My daughter Rose was born

with a left

> clubfoot in January 99, and she started seeing Dr. Ponseti at 6

months with

> terrific results.

>

> I'm expecting #4, and I'm a little over 25 weeks pregnant. We

recently

> discovered this baby has spina bifida and bilateral clubfeet. I'm

curious of

> whether the Ponseti Method would be beneficial in our case. I

know with spina

> bifida clubfoot does usually require surgery, but my question is

more on the

> level of would the Ponseti Method be better? Also, does anybody

here have

> experience with spina bifida? I'll be looking up other message

boards

> specifically geared toward spina bifida, obviously, so I have more

info, but

> I'd appreciate hearing from you.

>

> I'd appreciate any input. Thank you!

>

> Joy

>

> http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

> __________________________________________________

>

[Guest guest]

Joy,

I have no experience regarding clubfoot associated w/ Spina Bifida but

having been the surgical route myself and now having my son treated

with the Ponseti method I would say definitely go the Ponseti route.

I'm not sure what all the Spina Bifida means for your baby but I would

say that to correct the feet with the Ponseti method and then if for

some reason they are unable to be fully corrected any surgery required

at that point would be much more minimal than if you start with

surgery from the get go. HTH.

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs Brace 16-18/7)

> I'm a veteran (sort of) to clubfeet. My daughter Rose was born with

a left

> clubfoot in January 99, and she started seeing Dr. Ponseti at 6

months with

> terrific results.

>

> I'm expecting #4, and I'm a little over 25 weeks pregnant. We recently

> discovered this baby has spina bifida and bilateral clubfeet. I'm

curious of

> whether the Ponseti Method would be beneficial in our case. I know

with spina

> bifida clubfoot does usually require surgery, but my question is

more on the

> level of would the Ponseti Method be better? Also, does anybody

here have

> experience with spina bifida? I'll be looking up other message boards

> specifically geared toward spina bifida, obviously, so I have more

info, but

> I'd appreciate hearing from you.

>

> I'd appreciate any input. Thank you!

>

> Joy

>

> http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

> __________________________________________________

>

[Guest guest]

Joy,

I have no experience regarding clubfoot associated w/ Spina Bifida but

having been the surgical route myself and now having my son treated

with the Ponseti method I would say definitely go the Ponseti route.

I'm not sure what all the Spina Bifida means for your baby but I would

say that to correct the feet with the Ponseti method and then if for

some reason they are unable to be fully corrected any surgery required

at that point would be much more minimal than if you start with

surgery from the get go. HTH.

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs Brace 16-18/7)

> I'm a veteran (sort of) to clubfeet. My daughter Rose was born with

a left

> clubfoot in January 99, and she started seeing Dr. Ponseti at 6

months with

> terrific results.

>

> I'm expecting #4, and I'm a little over 25 weeks pregnant. We recently

> discovered this baby has spina bifida and bilateral clubfeet. I'm

curious of

> whether the Ponseti Method would be beneficial in our case. I know

with spina

> bifida clubfoot does usually require surgery, but my question is

more on the

> level of would the Ponseti Method be better? Also, does anybody

here have

> experience with spina bifida? I'll be looking up other message boards

> specifically geared toward spina bifida, obviously, so I have more

info, but

> I'd appreciate hearing from you.

>

> I'd appreciate any input. Thank you!

>

> Joy

>

> http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

> __________________________________________________

>

[Guest guest]

I don't have that much experience with spina bifida and clubfoot, but my son has

other possible spine problems that we are exploring. This could effect his

clubfoot treatment, but as of yet has not done so. He was corrected with 6

casts and no tenotomy. We are not 100% sure if there is any spine or brain

involvement like cerebral palsy or not, but have an MRI scheduled for June 29th.

For what I have read, there can be a neurological cause of clubfoot, which would

not allow it to be corrected with the Ponseti method because the brain would

continue to send the wrong signal therefore not allowing the foot to stay

corrected. With spina bifida involving the spinal cord, I am not sure how this

would impact the correction of the feet; however, in my opinion surgery is

always an option, so I would start with the Ponseti method. If this fails to

keep your child's feet corrected, then you could opt for surgery.

I know this can be a hard decision, but good luck! Congratulations on your

pregnancy, and keep us posted!

11/19/04

spina bifida and clubfoot

I'm a veteran (sort of) to clubfeet. My daughter Rose was born with a left

clubfoot in January 99, and she started seeing Dr. Ponseti at 6 months with

terrific results.

I'm expecting #4, and I'm a little over 25 weeks pregnant. We recently

discovered this baby has spina bifida and bilateral clubfeet. I'm curious of

whether the Ponseti Method would be beneficial in our case. I know with spina

bifida clubfoot does usually require surgery, but my question is more on the

level of would the Ponseti Method be better? Also, does anybody here have

experience with spina bifida? I'll be looking up other message boards

specifically geared toward spina bifida, obviously, so I have more info, but

I'd appreciate hearing from you.

I'd appreciate any input. Thank you!

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

[Guest guest]

I don't have that much experience with spina bifida and clubfoot, but my son has

other possible spine problems that we are exploring. This could effect his

clubfoot treatment, but as of yet has not done so. He was corrected with 6

casts and no tenotomy. We are not 100% sure if there is any spine or brain

involvement like cerebral palsy or not, but have an MRI scheduled for June 29th.

For what I have read, there can be a neurological cause of clubfoot, which would

not allow it to be corrected with the Ponseti method because the brain would

continue to send the wrong signal therefore not allowing the foot to stay

corrected. With spina bifida involving the spinal cord, I am not sure how this

would impact the correction of the feet; however, in my opinion surgery is

always an option, so I would start with the Ponseti method. If this fails to

keep your child's feet corrected, then you could opt for surgery.

I know this can be a hard decision, but good luck! Congratulations on your

pregnancy, and keep us posted!

11/19/04

spina bifida and clubfoot

I'm a veteran (sort of) to clubfeet. My daughter Rose was born with a left

clubfoot in January 99, and she started seeing Dr. Ponseti at 6 months with

terrific results.

I'm expecting #4, and I'm a little over 25 weeks pregnant. We recently

discovered this baby has spina bifida and bilateral clubfeet. I'm curious of

whether the Ponseti Method would be beneficial in our case. I know with spina

bifida clubfoot does usually require surgery, but my question is more on the

level of would the Ponseti Method be better? Also, does anybody here have

experience with spina bifida? I'll be looking up other message boards

specifically geared toward spina bifida, obviously, so I have more info, but

I'd appreciate hearing from you.

I'd appreciate any input. Thank you!

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

[Guest guest]

--- le wrote:

> My son has caudal regression syndrome, which has some of the

> features of spina bifida. I don't have any info for you, really,

> because i am wondering the same things that you are. My son's

> clubfeet are being handled by Dr. Jay at duPont in Delaware. Some

> people on here don't like Dr. Jay because he does not use Ponseti.

> If you find out anything, please let me know. Thanks.

>

> le

> www.caringbridge.com/pa/jordan

Thank you for your reply, le. I looked at the website for your son, and

boy, is he handsome!! I will be sure to update on our situation.

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

[Guest guest]

--- le wrote:

> My son has caudal regression syndrome, which has some of the

> features of spina bifida. I don't have any info for you, really,

> because i am wondering the same things that you are. My son's

> clubfeet are being handled by Dr. Jay at duPont in Delaware. Some

> people on here don't like Dr. Jay because he does not use Ponseti.

> If you find out anything, please let me know. Thanks.

>

> le

> www.caringbridge.com/pa/jordan

Thank you for your reply, le. I looked at the website for your son, and

boy, is he handsome!! I will be sure to update on our situation.

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

[Guest guest]

--- wrote:

> Joy,

> I have no experience regarding clubfoot associated w/ Spina Bifida but

> having been the surgical route myself and now having my son treated

> with the Ponseti method I would say definitely go the Ponseti route.

> I'm not sure what all the Spina Bifida means for your baby but I would

> say that to correct the feet with the Ponseti method and then if for

> some reason they are unable to be fully corrected any surgery required

> at that point would be much more minimal than if you start with

> surgery from the get go. HTH.

Thank you for your input, . I feel pretty strongly that I want to go

the Ponseti route. I'm just hoping we can.

So far, we aren't positive what spina bifida necessarily entails, either.

There is such a wide range of severity and outcome. We are hoping for the

best, but it sounds like the baby should be able to walk (with bracing). I

just think the less scar tissue the better...

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

[Guest guest]

--- wrote:

> Joy,

> I have no experience regarding clubfoot associated w/ Spina Bifida but

> having been the surgical route myself and now having my son treated

> with the Ponseti method I would say definitely go the Ponseti route.

> I'm not sure what all the Spina Bifida means for your baby but I would

> say that to correct the feet with the Ponseti method and then if for

> some reason they are unable to be fully corrected any surgery required

> at that point would be much more minimal than if you start with

> surgery from the get go. HTH.

Thank you for your input, . I feel pretty strongly that I want to go

the Ponseti route. I'm just hoping we can.

So far, we aren't positive what spina bifida necessarily entails, either.

There is such a wide range of severity and outcome. We are hoping for the

best, but it sounds like the baby should be able to walk (with bracing). I

just think the less scar tissue the better...

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

[Guest guest]

--- Goodin wrote:

> I don't have that much experience with spina bifida and clubfoot, but my son

> has other possible spine problems that we are exploring. This could effect

> his clubfoot treatment, but as of yet has not done so. He was corrected with

> 6 casts and no tenotomy. We are not 100% sure if there is any spine or brain

> involvement like cerebral palsy or not, but have an MRI scheduled for June

> 29th.

Oh, wow, I really hope you have a positive outcome! I'm so glad the treatment

has been successful so far. I will be thinking of you on the 29th.

> For what I have read, there can be a neurological cause of clubfoot, which

> would not allow it to be corrected with the Ponseti method because the brain

> would continue to send the wrong signal therefore not allowing the foot to

> stay corrected. With spina bifida involving the spinal cord, I am not sure

> how this would impact the correction of the feet; however, in my opinion

> surgery is always an option, so I would start with the Ponseti method. If

> this fails to keep your child's feet corrected, then you could opt for

> surgery.

I did read some articles that made it sound like spina bifida being difficult

to treat non-surgically. I really believe Dr. Ponseti's manipulation technique

to be far superior to what we saw done on Rose that was considered " tradional " .

Thanks for your input.

> I know this can be a hard decision, but good luck! Congratulations on your

> pregnancy, and keep us posted!

Thank you, and I will be sure to update as we find out more.

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

____________________________________________________

Yahoo! Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.yahoo.com

[Guest guest]

--- Goodin wrote:

> I don't have that much experience with spina bifida and clubfoot, but my son

> has other possible spine problems that we are exploring. This could effect

> his clubfoot treatment, but as of yet has not done so. He was corrected with

> 6 casts and no tenotomy. We are not 100% sure if there is any spine or brain

> involvement like cerebral palsy or not, but have an MRI scheduled for June

> 29th.

Oh, wow, I really hope you have a positive outcome! I'm so glad the treatment

has been successful so far. I will be thinking of you on the 29th.

> For what I have read, there can be a neurological cause of clubfoot, which

> would not allow it to be corrected with the Ponseti method because the brain

> would continue to send the wrong signal therefore not allowing the foot to

> stay corrected. With spina bifida involving the spinal cord, I am not sure

> how this would impact the correction of the feet; however, in my opinion

> surgery is always an option, so I would start with the Ponseti method. If

> this fails to keep your child's feet corrected, then you could opt for

> surgery.

I did read some articles that made it sound like spina bifida being difficult

to treat non-surgically. I really believe Dr. Ponseti's manipulation technique

to be far superior to what we saw done on Rose that was considered " tradional " .

Thanks for your input.

> I know this can be a hard decision, but good luck! Congratulations on your

> pregnancy, and keep us posted!

Thank you, and I will be sure to update as we find out more.

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

____________________________________________________

Yahoo! Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.yahoo.com