Re: Re: Distressing news from Portland Shriners

[Guest guest]

Leah,

DBB's are not " horrible " , some people have problems with them initially

if they are not fitted correctly or the foot is not fully corrected. I

actually think they are quite cute. has been in his since May

2003, he has never had a blister, he usually sleeps right through the

night and they are part of his normal routine. He brings them to us to

put on when he's going to sleep. I think that as this is a support

group, I think we see the minority of people asking for help, but there

are many, many more who had no issues with FAB's at all.

FAB (foot abduction brace) is what Dr Ponseti calls his slightly

modified DBB. They form part of the Ponseti method, any doctor who

doesn't use them is NOT following the Ponseti protocol. Apparently some

doctors use AFO's because they are worried about 'parent compliance'

issues with the FAB, I think that the parents should be allowed to make

that decision themselves, but that's another story...

I know that Dr Ponseti already tried AFO's years ago and they had too

many problems with feet relapsing. I don't really know much about AFO's

as we have never used them, but they are more expensive than FAB's

because they are custom made and have to be changed more often. There

was a post on this list a few months ago from a mother who had a lot of

problems with AFO's.

Hope this helps,

and

24 Jan 2003, bilateral cf

www.clubfoot.co.za

Re: Distressing news from Portland

Shriners

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´

[Guest guest]

Leah,

DBB's are not " horrible " , some people have problems with them initially

if they are not fitted correctly or the foot is not fully corrected. I

actually think they are quite cute. has been in his since May

2003, he has never had a blister, he usually sleeps right through the

night and they are part of his normal routine. He brings them to us to

put on when he's going to sleep. I think that as this is a support

group, I think we see the minority of people asking for help, but there

are many, many more who had no issues with FAB's at all.

FAB (foot abduction brace) is what Dr Ponseti calls his slightly

modified DBB. They form part of the Ponseti method, any doctor who

doesn't use them is NOT following the Ponseti protocol. Apparently some

doctors use AFO's because they are worried about 'parent compliance'

issues with the FAB, I think that the parents should be allowed to make

that decision themselves, but that's another story...

I know that Dr Ponseti already tried AFO's years ago and they had too

many problems with feet relapsing. I don't really know much about AFO's

as we have never used them, but they are more expensive than FAB's

because they are custom made and have to be changed more often. There

was a post on this list a few months ago from a mother who had a lot of

problems with AFO's.

Hope this helps,

and

24 Jan 2003, bilateral cf

www.clubfoot.co.za

Re: Distressing news from Portland

Shriners

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´

[Guest guest]

Leah,

DBB's are not " horrible " , some people have problems with them initially

if they are not fitted correctly or the foot is not fully corrected. I

actually think they are quite cute. has been in his since May

2003, he has never had a blister, he usually sleeps right through the

night and they are part of his normal routine. He brings them to us to

put on when he's going to sleep. I think that as this is a support

group, I think we see the minority of people asking for help, but there

are many, many more who had no issues with FAB's at all.

FAB (foot abduction brace) is what Dr Ponseti calls his slightly

modified DBB. They form part of the Ponseti method, any doctor who

doesn't use them is NOT following the Ponseti protocol. Apparently some

doctors use AFO's because they are worried about 'parent compliance'

issues with the FAB, I think that the parents should be allowed to make

that decision themselves, but that's another story...

I know that Dr Ponseti already tried AFO's years ago and they had too

many problems with feet relapsing. I don't really know much about AFO's

as we have never used them, but they are more expensive than FAB's

because they are custom made and have to be changed more often. There

was a post on this list a few months ago from a mother who had a lot of

problems with AFO's.

Hope this helps,

and

24 Jan 2003, bilateral cf

www.clubfoot.co.za

Re: Distressing news from Portland

Shriners

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´

[Guest guest]

Leah. I'm sorry I am unaware of your childs story, but AFO's cause

relapses. Because the foot cannot stay out at a 70 degree angle in the

AFO's, the feet start to turn back in. My daughter is starting treatment

of the Ponseti method over again (back in casts), because my daughter had

AFO's. She only had them about a month and was relapsing. Then I went to

get a 2nd opinion and we ended up starting all over. So generally for the

Ponseti method, AFO's is not the way to go. Is your doctor Ponseti

trained, etc. Please let me know your full story.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

I know this wasn't addressed to me but I need to reply. The AFO doesn't hold

the feet at the proper angles. On your own legs, hold them out shoulder width

and bring your toes up, you'll feel the calf and heel stretching in your leg.

That's what the DBB does that the AFO does not. It's critical for this to be

maintained a while as the child grows. An AFO simply cannot do this by it's

design, it's little more than wearing a regular shoe in this regard. If we

could get a bar on to an AFO I agree, it's generally more comfortable and easier

for a parent to apply to the foot - but it does not hold the correction.

Fit and used correctly, the DBB is not cruel or unusual punishment. It

shouldn't hurt. My son does everything in his DBB that he does with out it,

including cruising, crawling, rolling, etc. My 1st son went the AFO route

with bad, bad results.

s.

Re: Distressing news from Portland Shriners

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´