Re: What does a relapse look like??

[Guest guest]

Can you send us pics at CFPics? There are parents there who have seen

relapse first hand who could help you.

Don't beat yourself up about not wearing the brace, one night isn't going

to cause a relapse. I would rather look to the bracing hours if

anything. If he was reduced to nights only too soon, that may have been

part of the problem. I'm a big proponent of long bracing hours because of

this and I really hate to hear from parents who see relapse after being

reduced too early. So I continue to encourage long hours till they're

walking because I really think those early reductions cause more problems

than they solve.

Darbi is 26mo's as well and I brace her 12-14hr/d still and will continue

to do so till she's released next year sometime. I don't know if it would

have been different if she'd been reduced like her doc said she could

be... but I wasn't going to take any chances and actually upped her hours

to 14 if I can possibly get them in after a parent posted a reply from Dr.

P. saying 12-14 till release.

HTH

Kori

At 08:49 AM 6/22/2005, you wrote:

>Hi there. I've never posted before, but I've lurked (esp. in the

>beginning) and learned so much from you guys. Hope you don't mind my

>jumping in.

>

>My little guy Charlie is 26 months old, born with bilat cf and I'm a

>little worried. It seems like he's just hit a big growth spurt

>(including the feet) and, maybe it's my imagination, but I'm starting

>to notice a little tilt to his right foot (the more affected of the

>two when he was born) when he walks. The top part of his foot is

>definately tilted inwards and the Dr. (we see Dr. sey in

>Atlanta) mentioned that he was " relapsing a little at the top " at our

>last appt. back in April but said everything was still flexible and as

>long as he didn't start walking on the sides or up on the toes, he

>would probably be fine. He just encouraged us to not let up with the

>shoes.

>

>He's in the barred shoes at night now and I'm very very religious

>about it. A few weeks ago, though, my dh put him down for the night

>and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

>check on him when I got in so he was out of shoes for the night.

>Would this be enough time for a relapse to occur? HOnestly, that's

>the first time it's ever happened and it makes me just sick to my

>stomach that I didn't catch it He does have what the Dr. refers to

>as " difficult feet " . Short and fat and hard to hold in a cast

>correctly. He relapsed (or perhaps wasn't fully corrected) when he

>first went into the shoes at around 4 months and we had a 2nd tenotomy

>done, but everything has seemed fine since then.

>

>I'm worried. I went ahead and moved our appt. up to the next

>avaliable time (July 18th) and I think my dh and I are going to start

>putting him in the shoes both at night and during naps in hopes that

>will help keep things at bay if this *is* indeed a relapse.

>

>Does anyone have any insight on this? Other things that I could do

>(beyond not trusting my forgetful dh to put him in the shoes when he

>goes to bed ) to help until the appt. in July?

>

>The doctor is Ponsetti-OKed and I've looked down the list of the

> " warning signs " that the doc isn't following protocol exactly. He

>seems to have done everything exactly as listed with the exception of

>putting the shoes as 60 degrees rotation rather than 70 degrees.

>Anyone have any thoughts on that?

>

>Ugh! I'm just so sick to my stomach about this I hate the idea of

>putting my little guy through another surgery and I can't get over the

>idea that if he's relapsing, this is somehow my fault for not being

>diligent enough

>

>

>

>

>

>

>

[Guest guest]

Can you send us pics at CFPics? There are parents there who have seen

relapse first hand who could help you.

Don't beat yourself up about not wearing the brace, one night isn't going

to cause a relapse. I would rather look to the bracing hours if

anything. If he was reduced to nights only too soon, that may have been

part of the problem. I'm a big proponent of long bracing hours because of

this and I really hate to hear from parents who see relapse after being

reduced too early. So I continue to encourage long hours till they're

walking because I really think those early reductions cause more problems

than they solve.

Darbi is 26mo's as well and I brace her 12-14hr/d still and will continue

to do so till she's released next year sometime. I don't know if it would

have been different if she'd been reduced like her doc said she could

be... but I wasn't going to take any chances and actually upped her hours

to 14 if I can possibly get them in after a parent posted a reply from Dr.

P. saying 12-14 till release.

HTH

Kori

At 08:49 AM 6/22/2005, you wrote:

>Hi there. I've never posted before, but I've lurked (esp. in the

>beginning) and learned so much from you guys. Hope you don't mind my

>jumping in.

>

>My little guy Charlie is 26 months old, born with bilat cf and I'm a

>little worried. It seems like he's just hit a big growth spurt

>(including the feet) and, maybe it's my imagination, but I'm starting

>to notice a little tilt to his right foot (the more affected of the

>two when he was born) when he walks. The top part of his foot is

>definately tilted inwards and the Dr. (we see Dr. sey in

>Atlanta) mentioned that he was " relapsing a little at the top " at our

>last appt. back in April but said everything was still flexible and as

>long as he didn't start walking on the sides or up on the toes, he

>would probably be fine. He just encouraged us to not let up with the

>shoes.

>

>He's in the barred shoes at night now and I'm very very religious

>about it. A few weeks ago, though, my dh put him down for the night

>and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

>check on him when I got in so he was out of shoes for the night.

>Would this be enough time for a relapse to occur? HOnestly, that's

>the first time it's ever happened and it makes me just sick to my

>stomach that I didn't catch it He does have what the Dr. refers to

>as " difficult feet " . Short and fat and hard to hold in a cast

>correctly. He relapsed (or perhaps wasn't fully corrected) when he

>first went into the shoes at around 4 months and we had a 2nd tenotomy

>done, but everything has seemed fine since then.

>

>I'm worried. I went ahead and moved our appt. up to the next

>avaliable time (July 18th) and I think my dh and I are going to start

>putting him in the shoes both at night and during naps in hopes that

>will help keep things at bay if this *is* indeed a relapse.

>

>Does anyone have any insight on this? Other things that I could do

>(beyond not trusting my forgetful dh to put him in the shoes when he

>goes to bed ) to help until the appt. in July?

>

>The doctor is Ponsetti-OKed and I've looked down the list of the

> " warning signs " that the doc isn't following protocol exactly. He

>seems to have done everything exactly as listed with the exception of

>putting the shoes as 60 degrees rotation rather than 70 degrees.

>Anyone have any thoughts on that?

>

>Ugh! I'm just so sick to my stomach about this I hate the idea of

>putting my little guy through another surgery and I can't get over the

>idea that if he's relapsing, this is somehow my fault for not being

>diligent enough

>

>

>

>

>

>

>

[Guest guest]

Welcome to the group!

My daughter's doctor took her out of her shoes altogether at 18 months because

he thought she had loose ligaments and would be fine. Unfortunately, she was

not. She had a relapse, but her doctor wanted to wait and see becasue she

wasn't walking on the edge of her foot. He suggested that if she got worse

that he would need to do invasive surgery on her. We were not willing to do

that and took Livie to see Dr. Ponseti in Iowa. Livie was 31 months old when we

went. Dr. P recommended casting for the relapse. She had one cast on for two

weeks and was all fixed up again. She wore her brace for 16 hours a day for a

year after that and is now down to 12-14 hours where she will probably stay

until she is released. Because of her relapse, she will most likely be in the

brace until age 5.

What did her relapse look like? It's hard to say. When she was standing

completely still I really couldn't tell any difference than how her foot had

always looked since being corrected. When she walked though, that was a

different story. It started with a slight intoeing and progressively got worse

until she was walking with her toes pointed in all the time. She was still

walking flat on her foot (her doctor ordered a depth pressure study done), but

her toes pointed in. Like I said, because she wasn't walking on the edge of her

foot or on tiptoes, he wanted to wait and see. Dr. Ponseti took one look at her

foot and said she was definitely relapsing and we needed to take care of this

right now, not wait and see.

I seriously doubt that one night out of the shoes at Charlie's age caused a

relapse, but it could be that 12 hours is just not enough for him.

I would be concerned that the doctor noticed a relapse, but took a wait and see

approach. That seems to be headed towards surgery when just one or two casts at

this point might be enough to put him right back on track.

I know that casting a 26 month old seems daunting. Believe me I worried myself

sick over what to do with Livie while she was in a cast, but it really wasn't

bad at all. She figured out within hours how to walk with it on even though it

was the standard thigh high, bent at the knee cast. The worst part of the whole

thing for her was not being able to take a real bath for two weeks. She was

quite put out about that.

I would say go with your mom'

What does a relapse look like??

Hi there. I've never posted before, but I've lurked (esp. in the

beginning) and learned so much from you guys. Hope you don't mind my

jumping in.

My little guy Charlie is 26 months old, born with bilat cf and I'm a

little worried. It seems like he's just hit a big growth spurt

(including the feet) and, maybe it's my imagination, but I'm starting

to notice a little tilt to his right foot (the more affected of the

two when he was born) when he walks. The top part of his foot is

definately tilted inwards and the Dr. (we see Dr. sey in

Atlanta) mentioned that he was " relapsing a little at the top " at our

last appt. back in April but said everything was still flexible and as

long as he didn't start walking on the sides or up on the toes, he

would probably be fine. He just encouraged us to not let up with the

shoes.

He's in the barred shoes at night now and I'm very very religious

about it. A few weeks ago, though, my dh put him down for the night

and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

check on him when I got in so he was out of shoes for the night.

Would this be enough time for a relapse to occur? HOnestly, that's

the first time it's ever happened and it makes me just sick to my

stomach that I didn't catch it He does have what the Dr. refers to

as " difficult feet " . Short and fat and hard to hold in a cast

correctly. He relapsed (or perhaps wasn't fully corrected) when he

first went into the shoes at around 4 months and we had a 2nd tenotomy

done, but everything has seemed fine since then.

I'm worried. I went ahead and moved our appt. up to the next

avaliable time (July 18th) and I think my dh and I are going to start

putting him in the shoes both at night and during naps in hopes that

will help keep things at bay if this *is* indeed a relapse.

Does anyone have any insight on this? Other things that I could do

(beyond not trusting my forgetful dh to put him in the shoes when he

goes to bed ) to help until the appt. in July?

The doctor is Ponsetti-OKed and I've looked down the list of the

" warning signs " that the doc isn't following protocol exactly. He

seems to have done everything exactly as listed with the exception of

putting the shoes as 60 degrees rotation rather than 70 degrees.

Anyone have any thoughts on that?

Ugh! I'm just so sick to my stomach about this I hate the idea of

putting my little guy through another surgery and I can't get over the

idea that if he's relapsing, this is somehow my fault for not being

diligent enough

[Guest guest]

Welcome to the group!

My daughter's doctor took her out of her shoes altogether at 18 months because

he thought she had loose ligaments and would be fine. Unfortunately, she was

not. She had a relapse, but her doctor wanted to wait and see becasue she

wasn't walking on the edge of her foot. He suggested that if she got worse

that he would need to do invasive surgery on her. We were not willing to do

that and took Livie to see Dr. Ponseti in Iowa. Livie was 31 months old when we

went. Dr. P recommended casting for the relapse. She had one cast on for two

weeks and was all fixed up again. She wore her brace for 16 hours a day for a

year after that and is now down to 12-14 hours where she will probably stay

until she is released. Because of her relapse, she will most likely be in the

brace until age 5.

What did her relapse look like? It's hard to say. When she was standing

completely still I really couldn't tell any difference than how her foot had

always looked since being corrected. When she walked though, that was a

different story. It started with a slight intoeing and progressively got worse

until she was walking with her toes pointed in all the time. She was still

walking flat on her foot (her doctor ordered a depth pressure study done), but

her toes pointed in. Like I said, because she wasn't walking on the edge of her

foot or on tiptoes, he wanted to wait and see. Dr. Ponseti took one look at her

foot and said she was definitely relapsing and we needed to take care of this

right now, not wait and see.

I seriously doubt that one night out of the shoes at Charlie's age caused a

relapse, but it could be that 12 hours is just not enough for him.

I would be concerned that the doctor noticed a relapse, but took a wait and see

approach. That seems to be headed towards surgery when just one or two casts at

this point might be enough to put him right back on track.

I know that casting a 26 month old seems daunting. Believe me I worried myself

sick over what to do with Livie while she was in a cast, but it really wasn't

bad at all. She figured out within hours how to walk with it on even though it

was the standard thigh high, bent at the knee cast. The worst part of the whole

thing for her was not being able to take a real bath for two weeks. She was

quite put out about that.

I would say go with your mom'

What does a relapse look like??

Hi there. I've never posted before, but I've lurked (esp. in the

beginning) and learned so much from you guys. Hope you don't mind my

jumping in.

My little guy Charlie is 26 months old, born with bilat cf and I'm a

little worried. It seems like he's just hit a big growth spurt

(including the feet) and, maybe it's my imagination, but I'm starting

to notice a little tilt to his right foot (the more affected of the

two when he was born) when he walks. The top part of his foot is

definately tilted inwards and the Dr. (we see Dr. sey in

Atlanta) mentioned that he was " relapsing a little at the top " at our

last appt. back in April but said everything was still flexible and as

long as he didn't start walking on the sides or up on the toes, he

would probably be fine. He just encouraged us to not let up with the

shoes.

He's in the barred shoes at night now and I'm very very religious

about it. A few weeks ago, though, my dh put him down for the night

and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

check on him when I got in so he was out of shoes for the night.

Would this be enough time for a relapse to occur? HOnestly, that's

the first time it's ever happened and it makes me just sick to my

stomach that I didn't catch it He does have what the Dr. refers to

as " difficult feet " . Short and fat and hard to hold in a cast

correctly. He relapsed (or perhaps wasn't fully corrected) when he

first went into the shoes at around 4 months and we had a 2nd tenotomy

done, but everything has seemed fine since then.

I'm worried. I went ahead and moved our appt. up to the next

avaliable time (July 18th) and I think my dh and I are going to start

putting him in the shoes both at night and during naps in hopes that

will help keep things at bay if this *is* indeed a relapse.

Does anyone have any insight on this? Other things that I could do

(beyond not trusting my forgetful dh to put him in the shoes when he

goes to bed ) to help until the appt. in July?

The doctor is Ponsetti-OKed and I've looked down the list of the

" warning signs " that the doc isn't following protocol exactly. He

seems to have done everything exactly as listed with the exception of

putting the shoes as 60 degrees rotation rather than 70 degrees.

Anyone have any thoughts on that?

Ugh! I'm just so sick to my stomach about this I hate the idea of

putting my little guy through another surgery and I can't get over the

idea that if he's relapsing, this is somehow my fault for not being

diligent enough

[Guest guest]

I'm a dork and type way too fast! I hit send before I finished my other

message! lol

I was going to say......go with your mom's instinct. If it doesn't seem right,

it probably isn't. I ignored my instinct for several months when I knew

something wasn't right and I regret it. Question the doctor about casting for

relapse. What could it hurt at this point? And it might mean no surgery in the

future.

Good luck!

Jen & Livie (10-18-01 severe left clubfoot)

What does a relapse look like??

Hi there. I've never posted before, but I've lurked (esp. in the

beginning) and learned so much from you guys. Hope you don't mind my

jumping in.

My little guy Charlie is 26 months old, born with bilat cf and I'm a

little worried. It seems like he's just hit a big growth spurt

(including the feet) and, maybe it's my imagination, but I'm starting

to notice a little tilt to his right foot (the more affected of the

two when he was born) when he walks. The top part of his foot is

definately tilted inwards and the Dr. (we see Dr. sey in

Atlanta) mentioned that he was " relapsing a little at the top " at our

last appt. back in April but said everything was still flexible and as

long as he didn't start walking on the sides or up on the toes, he

would probably be fine. He just encouraged us to not let up with the

shoes.

He's in the barred shoes at night now and I'm very very religious

about it. A few weeks ago, though, my dh put him down for the night

and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

check on him when I got in so he was out of shoes for the night.

Would this be enough time for a relapse to occur? HOnestly, that's

the first time it's ever happened and it makes me just sick to my

stomach that I didn't catch it He does have what the Dr. refers to

as " difficult feet " . Short and fat and hard to hold in a cast

correctly. He relapsed (or perhaps wasn't fully corrected) when he

first went into the shoes at around 4 months and we had a 2nd tenotomy

done, but everything has seemed fine since then.

I'm worried. I went ahead and moved our appt. up to the next

avaliable time (July 18th) and I think my dh and I are going to start

putting him in the shoes both at night and during naps in hopes that

will help keep things at bay if this *is* indeed a relapse.

Does anyone have any insight on this? Other things that I could do

(beyond not trusting my forgetful dh to put him in the shoes when he

goes to bed ) to help until the appt. in July?

The doctor is Ponsetti-OKed and I've looked down the list of the

" warning signs " that the doc isn't following protocol exactly. He

seems to have done everything exactly as listed with the exception of

putting the shoes as 60 degrees rotation rather than 70 degrees.

Anyone have any thoughts on that?

Ugh! I'm just so sick to my stomach about this I hate the idea of

putting my little guy through another surgery and I can't get over the

idea that if he's relapsing, this is somehow my fault for not being

diligent enough

[Guest guest]

I'm a dork and type way too fast! I hit send before I finished my other

message! lol

I was going to say......go with your mom's instinct. If it doesn't seem right,

it probably isn't. I ignored my instinct for several months when I knew

something wasn't right and I regret it. Question the doctor about casting for

relapse. What could it hurt at this point? And it might mean no surgery in the

future.

Good luck!

Jen & Livie (10-18-01 severe left clubfoot)

What does a relapse look like??

Hi there. I've never posted before, but I've lurked (esp. in the

beginning) and learned so much from you guys. Hope you don't mind my

jumping in.

My little guy Charlie is 26 months old, born with bilat cf and I'm a

little worried. It seems like he's just hit a big growth spurt

(including the feet) and, maybe it's my imagination, but I'm starting

to notice a little tilt to his right foot (the more affected of the

two when he was born) when he walks. The top part of his foot is

definately tilted inwards and the Dr. (we see Dr. sey in

Atlanta) mentioned that he was " relapsing a little at the top " at our

last appt. back in April but said everything was still flexible and as

long as he didn't start walking on the sides or up on the toes, he

would probably be fine. He just encouraged us to not let up with the

shoes.

He's in the barred shoes at night now and I'm very very religious

about it. A few weeks ago, though, my dh put him down for the night

and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly didn't

check on him when I got in so he was out of shoes for the night.

Would this be enough time for a relapse to occur? HOnestly, that's

the first time it's ever happened and it makes me just sick to my

stomach that I didn't catch it He does have what the Dr. refers to

as " difficult feet " . Short and fat and hard to hold in a cast

correctly. He relapsed (or perhaps wasn't fully corrected) when he

first went into the shoes at around 4 months and we had a 2nd tenotomy

done, but everything has seemed fine since then.

I'm worried. I went ahead and moved our appt. up to the next

avaliable time (July 18th) and I think my dh and I are going to start

putting him in the shoes both at night and during naps in hopes that

will help keep things at bay if this *is* indeed a relapse.

Does anyone have any insight on this? Other things that I could do

(beyond not trusting my forgetful dh to put him in the shoes when he

goes to bed ) to help until the appt. in July?

The doctor is Ponsetti-OKed and I've looked down the list of the

" warning signs " that the doc isn't following protocol exactly. He

seems to have done everything exactly as listed with the exception of

putting the shoes as 60 degrees rotation rather than 70 degrees.

Anyone have any thoughts on that?

Ugh! I'm just so sick to my stomach about this I hate the idea of

putting my little guy through another surgery and I can't get over the

idea that if he's relapsing, this is somehow my fault for not being

diligent enough

[Guest guest]

Thanks so much for the replys!! I can get some pics of his feet. I'm

not sure how to send them to CFPics though (is that in the " Photos "

section)?

We were actually quite conservative in reducing his brace time. I

remember it being kind of a scary concept at the time to reduce (like

he was going to automatically relapse if we didn't keep him in 23/7).

We had a 2nd tenotomy at around 6 or 7 months (can't remember exactly

when, but I know he learned how to crawl in casts after the 2nd

surgery). And did the 3 more months of 23/7 time in the shoes. And

after that he was in for nights and naps for a really long time.

Definately after he started walking at 18 months. I think around 19

months is when we started getting lazy about the nap bracing...that's

when he started doing some outside care and it seemed like too much of

a hassle. I think even dropping the naps at that point was a pretty

gradual thing, though.

I do think we need to relook at the number of hours he spends braced

per day though. He probably sometimes gets less than 12 hours because

he goes to bed later or wakes up earlier or something. Hopefully,

putting him back in the shoes during naps will help with that. Sounds

like we need to shoot for the 14 hour mark like you're doing with your

little girl.

I need to stay up on it (like hang around here with you knowlegable

folks a little more ) and not let things fall by the wayside. I did

a ton of reading and a ton of lurking during his first year, but not

so much after he got to be 15 months or so.

Thanks again for your input!! Oh, btw, what exactly does " release "

mean? Is that a further surgery, or does that mean the doc just sees

her less and less.

Jeannie

> >Hi there. I've never posted before, but I've lurked (esp. in the

> >beginning) and learned so much from you guys. Hope you don't mind

my

> >jumping in.

> >

> >My little guy Charlie is 26 months old, born with bilat cf and I'm

a

> >little worried. It seems like he's just hit a big growth spurt

> >(including the feet) and, maybe it's my imagination, but I'm

starting

> >to notice a little tilt to his right foot (the more affected of the

> >two when he was born) when he walks. The top part of his foot is

> >definately tilted inwards and the Dr. (we see Dr.

sey in

> >Atlanta) mentioned that he was " relapsing a little at the top " at

our

> >last appt. back in April but said everything was still flexible

and as

> >long as he didn't start walking on the sides or up on the toes, he

> >would probably be fine. He just encouraged us to not let up with

the

> >shoes.

> >

> >He's in the barred shoes at night now and I'm very very religious

> >about it. A few weeks ago, though, my dh put him down for the

night

> >and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly

didn't

> >check on him when I got in so he was out of shoes for the night.

> >Would this be enough time for a relapse to occur? HOnestly, that's

> >the first time it's ever happened and it makes me just sick to my

> >stomach that I didn't catch it He does have what the Dr.

refers to

> >as " difficult feet " . Short and fat and hard to hold in a cast

> >correctly. He relapsed (or perhaps wasn't fully corrected) when he

> >first went into the shoes at around 4 months and we had a 2nd

tenotomy

> >done, but everything has seemed fine since then.

> >

> >I'm worried. I went ahead and moved our appt. up to the next

> >avaliable time (July 18th) and I think my dh and I are going to

start

> >putting him in the shoes both at night and during naps in hopes

that

> >will help keep things at bay if this *is* indeed a relapse.

> >

> >Does anyone have any insight on this? Other things that I could do

> >(beyond not trusting my forgetful dh to put him in the shoes when

he

> >goes to bed ) to help until the appt. in July?

> >

> >The doctor is Ponsetti-OKed and I've looked down the list of the

> > " warning signs " that the doc isn't following protocol exactly. He

> >seems to have done everything exactly as listed with the exception

of

> >putting the shoes as 60 degrees rotation rather than 70 degrees.

> >Anyone have any thoughts on that?

> >

> >Ugh! I'm just so sick to my stomach about this I hate the

idea of

> >putting my little guy through another surgery and I can't get over

the

> >idea that if he's relapsing, this is somehow my fault for not being

> >diligent enough

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks so much for the replys!! I can get some pics of his feet. I'm

not sure how to send them to CFPics though (is that in the " Photos "

section)?

We were actually quite conservative in reducing his brace time. I

remember it being kind of a scary concept at the time to reduce (like

he was going to automatically relapse if we didn't keep him in 23/7).

We had a 2nd tenotomy at around 6 or 7 months (can't remember exactly

when, but I know he learned how to crawl in casts after the 2nd

surgery). And did the 3 more months of 23/7 time in the shoes. And

after that he was in for nights and naps for a really long time.

Definately after he started walking at 18 months. I think around 19

months is when we started getting lazy about the nap bracing...that's

when he started doing some outside care and it seemed like too much of

a hassle. I think even dropping the naps at that point was a pretty

gradual thing, though.

I do think we need to relook at the number of hours he spends braced

per day though. He probably sometimes gets less than 12 hours because

he goes to bed later or wakes up earlier or something. Hopefully,

putting him back in the shoes during naps will help with that. Sounds

like we need to shoot for the 14 hour mark like you're doing with your

little girl.

I need to stay up on it (like hang around here with you knowlegable

folks a little more ) and not let things fall by the wayside. I did

a ton of reading and a ton of lurking during his first year, but not

so much after he got to be 15 months or so.

Thanks again for your input!! Oh, btw, what exactly does " release "

mean? Is that a further surgery, or does that mean the doc just sees

her less and less.

Jeannie

> >Hi there. I've never posted before, but I've lurked (esp. in the

> >beginning) and learned so much from you guys. Hope you don't mind

my

> >jumping in.

> >

> >My little guy Charlie is 26 months old, born with bilat cf and I'm

a

> >little worried. It seems like he's just hit a big growth spurt

> >(including the feet) and, maybe it's my imagination, but I'm

starting

> >to notice a little tilt to his right foot (the more affected of the

> >two when he was born) when he walks. The top part of his foot is

> >definately tilted inwards and the Dr. (we see Dr.

sey in

> >Atlanta) mentioned that he was " relapsing a little at the top " at

our

> >last appt. back in April but said everything was still flexible

and as

> >long as he didn't start walking on the sides or up on the toes, he

> >would probably be fine. He just encouraged us to not let up with

the

> >shoes.

> >

> >He's in the barred shoes at night now and I'm very very religious

> >about it. A few weeks ago, though, my dh put him down for the

night

> >and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly

didn't

> >check on him when I got in so he was out of shoes for the night.

> >Would this be enough time for a relapse to occur? HOnestly, that's

> >the first time it's ever happened and it makes me just sick to my

> >stomach that I didn't catch it He does have what the Dr.

refers to

> >as " difficult feet " . Short and fat and hard to hold in a cast

> >correctly. He relapsed (or perhaps wasn't fully corrected) when he

> >first went into the shoes at around 4 months and we had a 2nd

tenotomy

> >done, but everything has seemed fine since then.

> >

> >I'm worried. I went ahead and moved our appt. up to the next

> >avaliable time (July 18th) and I think my dh and I are going to

start

> >putting him in the shoes both at night and during naps in hopes

that

> >will help keep things at bay if this *is* indeed a relapse.

> >

> >Does anyone have any insight on this? Other things that I could do

> >(beyond not trusting my forgetful dh to put him in the shoes when

he

> >goes to bed ) to help until the appt. in July?

> >

> >The doctor is Ponsetti-OKed and I've looked down the list of the

> > " warning signs " that the doc isn't following protocol exactly. He

> >seems to have done everything exactly as listed with the exception

of

> >putting the shoes as 60 degrees rotation rather than 70 degrees.

> >Anyone have any thoughts on that?

> >

> >Ugh! I'm just so sick to my stomach about this I hate the

idea of

> >putting my little guy through another surgery and I can't get over

the

> >idea that if he's relapsing, this is somehow my fault for not being

> >diligent enough

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thank you so much, Jen!!! Though the casting *does* seem daunting at

his age, it seems so so sooooooo much better than the idea of further

surgery (with casts for a number of weeks afterwards, of course).

It's actually a relief to hear from someone who handled a relapse

through mere casting rather than further surgery.

I do think it's pretty minor at this point, if he is, indeed,

relapsing. I was watching him super closely yesterday (he was running

barefooted on cement) and he does seem to have his feet flat on the

ground with that. Actually, I think it's a specific pair of shoes

(some sandals that might be getting too small) that we're noticing the

tilt on. While I don't see him toeing in or walking any

different, the tops of his feet are definately turning in more than

they used to be. That was definately what the doctor was commenting

on when he mentioned them relapsing slightly.

I will most certainly talk to our doc about further casting when we

see him! Maybe I'll print out your post to bring to him. I'm

definately upping the barred-shoe time.

Thanks again!!

Jeannie

> I'm a dork and type way too fast! I hit send before I finished my

other message! lol

>

> I was going to say......go with your mom's instinct. If it doesn't

seem right, it probably isn't. I ignored my instinct for several

months when I knew something wasn't right and I regret it. Question

the doctor about casting for relapse. What could it hurt at this

point? And it might mean no surgery in the future.

>

> Good luck!

>

> Jen & Livie (10-18-01 severe left clubfoot)

> What does a relapse look like??

>

>

> Hi there. I've never posted before, but I've lurked (esp. in the

> beginning) and learned so much from you guys. Hope you don't mind

my

> jumping in.

>

> My little guy Charlie is 26 months old, born with bilat cf and

I'm a

> little worried. It seems like he's just hit a big growth spurt

> (including the feet) and, maybe it's my imagination, but I'm

starting

> to notice a little tilt to his right foot (the more affected of

the

> two when he was born) when he walks. The top part of his foot is

> definately tilted inwards and the Dr. (we see Dr.

sey in

> Atlanta) mentioned that he was " relapsing a little at the top " at

our

> last appt. back in April but said everything was still flexible

and as

> long as he didn't start walking on the sides or up on the toes, he

> would probably be fine. He just encouraged us to not let up with

the

> shoes.

>

> He's in the barred shoes at night now and I'm very very religious

> about it. A few weeks ago, though, my dh put him down for the

night

> and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly

didn't

> check on him when I got in so he was out of shoes for the night.

> Would this be enough time for a relapse to occur? HOnestly,

that's

> the first time it's ever happened and it makes me just sick to my

> stomach that I didn't catch it He does have what the Dr.

refers to

> as " difficult feet " . Short and fat and hard to hold in a cast

> correctly. He relapsed (or perhaps wasn't fully corrected) when

he

> first went into the shoes at around 4 months and we had a 2nd

tenotomy

> done, but everything has seemed fine since then.

>

> I'm worried. I went ahead and moved our appt. up to the next

> avaliable time (July 18th) and I think my dh and I are going to

start

> putting him in the shoes both at night and during naps in hopes

that

> will help keep things at bay if this *is* indeed a relapse.

>

> Does anyone have any insight on this? Other things that I could

do

> (beyond not trusting my forgetful dh to put him in the shoes when

he

> goes to bed ) to help until the appt. in July?

>

> The doctor is Ponsetti-OKed and I've looked down the list of the

> " warning signs " that the doc isn't following protocol exactly. He

> seems to have done everything exactly as listed with the

exception of

> putting the shoes as 60 degrees rotation rather than 70 degrees.

> Anyone have any thoughts on that?

>

> Ugh! I'm just so sick to my stomach about this I hate the

idea of

> putting my little guy through another surgery and I can't get

over the

> idea that if he's relapsing, this is somehow my fault for not

being

> diligent enough

>

>

>

>

>

>

>

[Guest guest]

Thank you so much, Jen!!! Though the casting *does* seem daunting at

his age, it seems so so sooooooo much better than the idea of further

surgery (with casts for a number of weeks afterwards, of course).

It's actually a relief to hear from someone who handled a relapse

through mere casting rather than further surgery.

I do think it's pretty minor at this point, if he is, indeed,

relapsing. I was watching him super closely yesterday (he was running

barefooted on cement) and he does seem to have his feet flat on the

ground with that. Actually, I think it's a specific pair of shoes

(some sandals that might be getting too small) that we're noticing the

tilt on. While I don't see him toeing in or walking any

different, the tops of his feet are definately turning in more than

they used to be. That was definately what the doctor was commenting

on when he mentioned them relapsing slightly.

I will most certainly talk to our doc about further casting when we

see him! Maybe I'll print out your post to bring to him. I'm

definately upping the barred-shoe time.

Thanks again!!

Jeannie

> I'm a dork and type way too fast! I hit send before I finished my

other message! lol

>

> I was going to say......go with your mom's instinct. If it doesn't

seem right, it probably isn't. I ignored my instinct for several

months when I knew something wasn't right and I regret it. Question

the doctor about casting for relapse. What could it hurt at this

point? And it might mean no surgery in the future.

>

> Good luck!

>

> Jen & Livie (10-18-01 severe left clubfoot)

> What does a relapse look like??

>

>

> Hi there. I've never posted before, but I've lurked (esp. in the

> beginning) and learned so much from you guys. Hope you don't mind

my

> jumping in.

>

> My little guy Charlie is 26 months old, born with bilat cf and

I'm a

> little worried. It seems like he's just hit a big growth spurt

> (including the feet) and, maybe it's my imagination, but I'm

starting

> to notice a little tilt to his right foot (the more affected of

the

> two when he was born) when he walks. The top part of his foot is

> definately tilted inwards and the Dr. (we see Dr.

sey in

> Atlanta) mentioned that he was " relapsing a little at the top " at

our

> last appt. back in April but said everything was still flexible

and as

> long as he didn't start walking on the sides or up on the toes, he

> would probably be fine. He just encouraged us to not let up with

the

> shoes.

>

> He's in the barred shoes at night now and I'm very very religious

> about it. A few weeks ago, though, my dh put him down for the

night

> and " forgot " to put shoes on (doh Doh DOH!!!!) and I foolishly

didn't

> check on him when I got in so he was out of shoes for the night.

> Would this be enough time for a relapse to occur? HOnestly,

that's

> the first time it's ever happened and it makes me just sick to my

> stomach that I didn't catch it He does have what the Dr.

refers to

> as " difficult feet " . Short and fat and hard to hold in a cast

> correctly. He relapsed (or perhaps wasn't fully corrected) when

he

> first went into the shoes at around 4 months and we had a 2nd

tenotomy

> done, but everything has seemed fine since then.

>

> I'm worried. I went ahead and moved our appt. up to the next

> avaliable time (July 18th) and I think my dh and I are going to

start

> putting him in the shoes both at night and during naps in hopes

that

> will help keep things at bay if this *is* indeed a relapse.

>

> Does anyone have any insight on this? Other things that I could

do

> (beyond not trusting my forgetful dh to put him in the shoes when

he

> goes to bed ) to help until the appt. in July?

>

> The doctor is Ponsetti-OKed and I've looked down the list of the

> " warning signs " that the doc isn't following protocol exactly. He

> seems to have done everything exactly as listed with the

exception of

> putting the shoes as 60 degrees rotation rather than 70 degrees.

> Anyone have any thoughts on that?

>

> Ugh! I'm just so sick to my stomach about this I hate the

idea of

> putting my little guy through another surgery and I can't get

over the

> idea that if he's relapsing, this is somehow my fault for not

being

> diligent enough

>

>

>

>

>

>

>

[Guest guest]

At 06:45 AM 6/23/2005, you wrote:

>Thanks so much for the replys!! I can get some pics of his feet. I'm

>not sure how to send them to CFPics though (is that in the " Photos "

>section)?

CFPics is a separate yahoo group that accepts attachments so we can send

emails with photos attached. This group does not accept

attachments. There is a little survey that's sent to you when you request

membership that you can fill out and send back (just reply to the email

that includes the info/survey attachment) so we know you're not a

creep/wacko who wants to look at feet. Once you're approved you can then

pen an email and attach or embed a picture and send it to the list. We

also have a photo library for reference - of various things CF parents find

interesting/educational but for general postings of photos of faces and

feet we send them via email. The photo section just fills up too fast if

people post pics there so we don't use it like that anymore.

Here's the link to subscribe. I monitor it pretty well so if you get the

survey back to me I approve you right away.

*

<http://groups.yahoo.com/group/CFPics/>http://groups.yahoo.com/group/CFPics/

>We were actually quite conservative in reducing his brace time. I

>remember it being kind of a scary concept at the time to reduce (like

>he was going to automatically relapse if we didn't keep him in 23/7).

> We had a 2nd tenotomy at around 6 or 7 months (can't remember exactly

>when, but I know he learned how to crawl in casts after the 2nd

>surgery). And did the 3 more months of 23/7 time in the shoes. And

>after that he was in for nights and naps for a really long time.

>Definately after he started walking at 18 months. I think around 19

>months is when we started getting lazy about the nap bracing...that's

>when he started doing some outside care and it seemed like too much of

>a hassle. I think even dropping the naps at that point was a pretty

>gradual thing, though.

Wow, what a difficult time! When I talk about reducing too soon, I'm

talking about dropping from 23/7 to anything less than 18hr/d which is

very, very common amongst seemingly well meaning docs. It seems that this

period of long hours is so often discarded and babes go right to nights and

naps after the 23/7. And that seems to be causing problems for many

parents and babes. It is not your fault, not at all. Don't think for one

minute it is. The Docs tell us it's fine, and we're more than happy to

drop the hours. It seems so easy! But in the end, I know those who have

looked back after some kind of relapse needing further treatment would say

it would have been so much easier to do the 18hr/d when babe was tiny than

to deal with what they're dealing with in regards to the relapse with a

much older child. This is why it's so frustrating to me to hear about docs

reducing to nights and naps right out of the 23/7 like they're doing us

some wonderful favor. Why they feel they must do this is beyond me because

I know first hand how simple, simple, simple it is to do these long hours

with an infant and heard second hand how difficult, difficult, difficult it

is to go back to 16hr/d with a 2 or 3 year old. They aren't saving us a

darn thing so I just wish they'd STOP being so freaking generous (tongue in

cheek)!

>I do think we need to relook at the number of hours he spends braced

>per day though. He probably sometimes gets less than 12 hours because

>he goes to bed later or wakes up earlier or something. Hopefully,

>putting him back in the shoes during naps will help with that. Sounds

>like we need to shoot for the 14 hour mark like you're doing with your

>little girl.

I brace her all in one stretch. I've never done naps. Way too much work

for me! I put her shoes on at 8pm, and she wears them till at least 8am

and most times till 10. If they go on at 9, she wears them till 9am or

even 11am. Then we put them away (ok, drop them on the couch lol) till

that evening when it's time for bed. She can't hardly sleep without her

shoes, and won't go to sleep unless she's dead tired in her carseat or

nursing out of bed without them. If I lie down with her to nurse to sleep

she kicks her feet all around and I end up putting them on anyway. Go

figure!

>I need to stay up on it (like hang around here with you knowlegable

>folks a little more ) and not let things fall by the wayside. I did

>a ton of reading and a ton of lurking during his first year, but not

>so much after he got to be 15 months or so.

>

>Thanks again for your input!! Oh, btw, what exactly does " release "

>mean? Is that a further surgery, or does that mean the doc just sees

>her less and less.

Released from the brace. Meaning treatment over. Foot is happy and

straight and needs no further bracing. Sorry if that was unclear.

Kori

[Guest guest]

At 06:45 AM 6/23/2005, you wrote:

>Thanks so much for the replys!! I can get some pics of his feet. I'm

>not sure how to send them to CFPics though (is that in the " Photos "

>section)?

CFPics is a separate yahoo group that accepts attachments so we can send

emails with photos attached. This group does not accept

attachments. There is a little survey that's sent to you when you request

membership that you can fill out and send back (just reply to the email

that includes the info/survey attachment) so we know you're not a

creep/wacko who wants to look at feet. Once you're approved you can then

pen an email and attach or embed a picture and send it to the list. We

also have a photo library for reference - of various things CF parents find

interesting/educational but for general postings of photos of faces and

feet we send them via email. The photo section just fills up too fast if

people post pics there so we don't use it like that anymore.

Here's the link to subscribe. I monitor it pretty well so if you get the

survey back to me I approve you right away.

*

<http://groups.yahoo.com/group/CFPics/>http://groups.yahoo.com/group/CFPics/

>We were actually quite conservative in reducing his brace time. I

>remember it being kind of a scary concept at the time to reduce (like

>he was going to automatically relapse if we didn't keep him in 23/7).

> We had a 2nd tenotomy at around 6 or 7 months (can't remember exactly

>when, but I know he learned how to crawl in casts after the 2nd

>surgery). And did the 3 more months of 23/7 time in the shoes. And

>after that he was in for nights and naps for a really long time.

>Definately after he started walking at 18 months. I think around 19

>months is when we started getting lazy about the nap bracing...that's

>when he started doing some outside care and it seemed like too much of

>a hassle. I think even dropping the naps at that point was a pretty

>gradual thing, though.

Wow, what a difficult time! When I talk about reducing too soon, I'm

talking about dropping from 23/7 to anything less than 18hr/d which is

very, very common amongst seemingly well meaning docs. It seems that this

period of long hours is so often discarded and babes go right to nights and

naps after the 23/7. And that seems to be causing problems for many

parents and babes. It is not your fault, not at all. Don't think for one

minute it is. The Docs tell us it's fine, and we're more than happy to

drop the hours. It seems so easy! But in the end, I know those who have

looked back after some kind of relapse needing further treatment would say

it would have been so much easier to do the 18hr/d when babe was tiny than

to deal with what they're dealing with in regards to the relapse with a

much older child. This is why it's so frustrating to me to hear about docs

reducing to nights and naps right out of the 23/7 like they're doing us

some wonderful favor. Why they feel they must do this is beyond me because

I know first hand how simple, simple, simple it is to do these long hours

with an infant and heard second hand how difficult, difficult, difficult it

is to go back to 16hr/d with a 2 or 3 year old. They aren't saving us a

darn thing so I just wish they'd STOP being so freaking generous (tongue in

cheek)!

>I do think we need to relook at the number of hours he spends braced

>per day though. He probably sometimes gets less than 12 hours because

>he goes to bed later or wakes up earlier or something. Hopefully,

>putting him back in the shoes during naps will help with that. Sounds

>like we need to shoot for the 14 hour mark like you're doing with your

>little girl.

I brace her all in one stretch. I've never done naps. Way too much work

for me! I put her shoes on at 8pm, and she wears them till at least 8am

and most times till 10. If they go on at 9, she wears them till 9am or

even 11am. Then we put them away (ok, drop them on the couch lol) till

that evening when it's time for bed. She can't hardly sleep without her

shoes, and won't go to sleep unless she's dead tired in her carseat or

nursing out of bed without them. If I lie down with her to nurse to sleep

she kicks her feet all around and I end up putting them on anyway. Go

figure!

>I need to stay up on it (like hang around here with you knowlegable

>folks a little more ) and not let things fall by the wayside. I did

>a ton of reading and a ton of lurking during his first year, but not

>so much after he got to be 15 months or so.

>

>Thanks again for your input!! Oh, btw, what exactly does " release "

>mean? Is that a further surgery, or does that mean the doc just sees

>her less and less.

Released from the brace. Meaning treatment over. Foot is happy and

straight and needs no further bracing. Sorry if that was unclear.

Kori