worried

[Guest guest]

I haven't logged onto this group for a long time because of computer

problems, but now that I am finally able to, I'm pretty worried. I

noticed there were a lot of posts in early January regarding how long

to be in the DBB. My son Jaren is 9 1/2 months old with a right

clubfoot. He had the heel cord lengthening when he was about 6 weeks

old-went through the castings, etc. He has been in the DBB ever

since for 23-24 hours/day. When we first consulted with the Dr.

(Mayo Clinic in Rochester. MN) he said Jaren would be in the DBB 24/7

until he started to pull himself up. Well he has been trying to do

this for over a month now-we have taken his shoes off for an hour or

so just so he can pull himself up to a stand. At our last Dr. visit

(1/16) the dr. said he wanted him in the DBB for at least another

month. (He said that usually he keeps the kids in them 24/7 until

they are a year old.) And then he said only at bedtime-not at

naptime or any other time. Seeing those other posts worries me. I'm

worried that he could relapse if he's out of them too soon. I've

emailed Dr. Ponseti in the past regarding this-seems our dr. has been

to Iowa to see Dr. Ponseti but he has not sent in all the required

info. to be accredited by Dr. Ponseti. Dr. Ponseti also said that

his protocol is to keep them 24/7 for 3 months, then during naptime

and bedtime until age 3. Our dr. says that Jaren's clubfoot was

pretty severe-he still has a pretty deep crease in his foot that now

the dr. says may not ever go away. (He said it would when we first

saw him.) I guess I am just kind of in limbo here-I don't want Jaren

out of them too soon, but I also know that he is ready to take off

cruising pretty soon. I definitely don't want him to relapse, but

the way his left foot (non-clubbed) is looking, I'm not sure I want

him in the DBB until a year-when his DBB is off for bathtime, he

doesn't really even attempt to straighten it out. I'm afraid it's

overcorrecting his left foot, which was normal. What's a person to

do?

[Guest guest]

Hi Kim-

I would send Dr. P pictures of your son's foot. Sounds like they didn't get

a complete correction with the cast. ALL of Dr. P's patients where the DBB

for only 23hrs a day for 3 months. It doesn't matter how severe they are or

not. MANY doctors out there that are not on Dr. P's list modify and keep

children in the DBB longer when it is not necessary. In fact it can

sometimes harm the child if they have loose ligaments already. Is your

childs cf at 70 degrees? Sometimes doc's lower the degree to 45 and then

keep them in it longer which Dr. P says is not a good idea and can lead to

regression. Tell you the truth I can't believe you made it this long 23hr

for 9 months. 90 days was plenty LONG enough for me and for my son.

> "

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: worried

>Date: Mon, 27 Jan 2003 04:01:57 -0000

>

>I haven't logged onto this group for a long time because of computer

>problems, but now that I am finally able to, I'm pretty worried. I

>noticed there were a lot of posts in early January regarding how long

>to be in the DBB. My son Jaren is 9 1/2 months old with a right

>clubfoot. He had the heel cord lengthening when he was about 6 weeks

>old-went through the castings, etc. He has been in the DBB ever

>since for 23-24 hours/day. When we first consulted with the Dr.

>(Mayo Clinic in Rochester. MN) he said Jaren would be in the DBB 24/7

>until he started to pull himself up. Well he has been trying to do

>this for over a month now-we have taken his shoes off for an hour or

>so just so he can pull himself up to a stand. At our last Dr. visit

>(1/16) the dr. said he wanted him in the DBB for at least another

>month. (He said that usually he keeps the kids in them 24/7 until

>they are a year old.) And then he said only at bedtime-not at

>naptime or any other time. Seeing those other posts worries me. I'm

>worried that he could relapse if he's out of them too soon. I've

>emailed Dr. Ponseti in the past regarding this-seems our dr. has been

>to Iowa to see Dr. Ponseti but he has not sent in all the required

>info. to be accredited by Dr. Ponseti. Dr. Ponseti also said that

>his protocol is to keep them 24/7 for 3 months, then during naptime

>and bedtime until age 3. Our dr. says that Jaren's clubfoot was

>pretty severe-he still has a pretty deep crease in his foot that now

>the dr. says may not ever go away. (He said it would when we first

>saw him.) I guess I am just kind of in limbo here-I don't want Jaren

>out of them too soon, but I also know that he is ready to take off

>cruising pretty soon. I definitely don't want him to relapse, but

>the way his left foot (non-clubbed) is looking, I'm not sure I want

>him in the DBB until a year-when his DBB is off for bathtime, he

>doesn't really even attempt to straighten it out. I'm afraid it's

>overcorrecting his left foot, which was normal. What's a person to

>do?

>

>

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[Guest guest]

Hi -

Well now I am really worried. He IS at a 45 degree angle-has been

since he first got the shoes. I wonder what the odds are now of

regression. It makes me so mad-why do doctors screw around with

stuff???? Dr. P has a procedure that works-why don't doctors stick

to it?? I am definitely going to email pics of Jaren's foot to Dr.

P. Hopefully it's not too late. My husband and I talked it over

last night and we think we should go against what our dr. says and

put them on at naptime and bedtime. But should we start now or

should we wait until next month? And since his DBB are at 45

degrees, is putting them on at naptime even going to help? In the

past, we've mentioned to our doc that we contacted Dr. P-he seemed

kind of shocked-he said he's never heard of anyone doing that

before. Well, gee, guess there's a first time for everything isn't

there. How can we tell if Jaren starts to regress? He isn't

supposed to go back for a visit until May. Any help is appreciated!

> Hi Kim-

>

> I would send Dr. P pictures of your son's foot. Sounds like they

didn't get

> a complete correction with the cast. ALL of Dr. P's patients where

the DBB

> for only 23hrs a day for 3 months. It doesn't matter how severe

they are or

> not. MANY doctors out there that are not on Dr. P's list modify and

keep

> children in the DBB longer when it is not necessary. In fact it can

> sometimes harm the child if they have loose ligaments already. Is

your

> childs cf at 70 degrees? Sometimes doc's lower the degree to 45 and

then

> keep them in it longer which Dr. P says is not a good idea and can

lead to

> regression. Tell you the truth I can't believe you made it this

long 23hr

> for 9 months. 90 days was plenty LONG enough for me and for my son.

>

>

>

>

>

>

>

>

>

> >From: " cramik412 <cramik@c...> " <cramik@c...>

> >Reply-To: nosurgery4clubfoot

> >To: nosurgery4clubfoot

> >Subject: worried

> >Date: Mon, 27 Jan 2003 04:01:57 -0000

> >

> >I haven't logged onto this group for a long time because of

computer

> >problems, but now that I am finally able to, I'm pretty worried. I

> >noticed there were a lot of posts in early January regarding how

long

> >to be in the DBB. My son Jaren is 9 1/2 months old with a right

> >clubfoot. He had the heel cord lengthening when he was about 6

weeks

> >old-went through the castings, etc. He has been in the DBB ever

> >since for 23-24 hours/day. When we first consulted with the Dr.

> >(Mayo Clinic in Rochester. MN) he said Jaren would be in the DBB

24/7

> >until he started to pull himself up. Well he has been trying to do

> >this for over a month now-we have taken his shoes off for an hour

or

> >so just so he can pull himself up to a stand. At our last Dr.

visit

> >(1/16) the dr. said he wanted him in the DBB for at least another

> >month. (He said that usually he keeps the kids in them 24/7 until

> >they are a year old.) And then he said only at bedtime-not at

> >naptime or any other time. Seeing those other posts worries me.

I'm

> >worried that he could relapse if he's out of them too soon. I've

> >emailed Dr. Ponseti in the past regarding this-seems our dr. has

been

> >to Iowa to see Dr. Ponseti but he has not sent in all the required

> >info. to be accredited by Dr. Ponseti. Dr. Ponseti also said that

> >his protocol is to keep them 24/7 for 3 months, then during naptime

> >and bedtime until age 3. Our dr. says that Jaren's clubfoot was

> >pretty severe-he still has a pretty deep crease in his foot that

now

> >the dr. says may not ever go away. (He said it would when we first

> >saw him.) I guess I am just kind of in limbo here-I don't want

Jaren

> >out of them too soon, but I also know that he is ready to take off

> >cruising pretty soon. I definitely don't want him to relapse, but

> >the way his left foot (non-clubbed) is looking, I'm not sure I want

> >him in the DBB until a year-when his DBB is off for bathtime, he

> >doesn't really even attempt to straighten it out. I'm afraid it's

> >overcorrecting his left foot, which was normal. What's a person to

> >do?

> >

> >

>

>

> _________________________________________________________________

> Add photos to your messages with MSN 8. Get 2 months FREE*.

> http://join.msn.com/?page=features/featuredemail

[Guest guest]

Hi Kimberely-

I'm sorry to of worried you, that was not my intetions. It is just that my

doctor did the same thing and it really bugs me that doctors are modifying

the method and not letting us parents know before they do!!! Here are some

of my emails back and forth to Dr. Ponseti. It shows his recomendation on

how to get back on the right track. Sometimes one additional cast is

necessary, so their foot will tolerate the proper degree (70 degrees) in the

shoes. My son was only casted at 45 degrees in his last cast (after

tenonomy), but we were able to gradually get him to 63 degrees so he didn't

have to be recasted. My son could only tolerate the DBB at 63 degrees, so

that is where we have him at. As you can see from Ponseti's email below 70

is the ideal. Hope this helps. The best thing is to get pictures to him

asap.

June 10, 2002

Dear Mrs. Wray:

You can try increasing the turning out of the shoes to 50 degrees to see how

it is tolerated and then try increasing it by about 5 degrees every 5 or 6

days. If the baby fusses, you may have to reduce the turning out until he

is comfortable and wait a few more days before increasing it again. It is

best if you can eventually get the shoes turned out to 70 degrees, but even

to 60 degrees would be an improvement.

I.V> Ponseti, M.D.

worried

> > >Date: Mon, 27 Jan 2003 04:01:57 -0000

> > >

> > >I haven't logged onto this group for a long time because of

>computer

> > >problems, but now that I am finally able to, I'm pretty worried. I

> > >noticed there were a lot of posts in early January regarding how

>long

> > >to be in the DBB. My son Jaren is 9 1/2 months old with a right

> > >clubfoot. He had the heel cord lengthening when he was about 6

>weeks

> > >old-went through the castings, etc. He has been in the DBB ever

> > >since for 23-24 hours/day. When we first consulted with the Dr.

> > >(Mayo Clinic in Rochester. MN) he said Jaren would be in the DBB

>24/7

> > >until he started to pull himself up. Well he has been trying to do

> > >this for over a month now-we have taken his shoes off for an hour

>or

> > >so just so he can pull himself up to a stand. At our last Dr.

>visit

> > >(1/16) the dr. said he wanted him in the DBB for at least another

> > >month. (He said that usually he keeps the kids in them 24/7 until

> > >they are a year old.) And then he said only at bedtime-not at

> > >naptime or any other time. Seeing those other posts worries me.

>I'm

> > >worried that he could relapse if he's out of them too soon. I've

> > >emailed Dr. Ponseti in the past regarding this-seems our dr. has

>been

> > >to Iowa to see Dr. Ponseti but he has not sent in all the required

> > >info. to be accredited by Dr. Ponseti. Dr. Ponseti also said that

> > >his protocol is to keep them 24/7 for 3 months, then during naptime

> > >and bedtime until age 3. Our dr. says that Jaren's clubfoot was

> > >pretty severe-he still has a pretty deep crease in his foot that

>now

> > >the dr. says may not ever go away. (He said it would when we first

> > >saw him.) I guess I am just kind of in limbo here-I don't want

>Jaren

> > >out of them too soon, but I also know that he is ready to take off

> > >cruising pretty soon. I definitely don't want him to relapse, but

> > >the way his left foot (non-clubbed) is looking, I'm not sure I want

> > >him in the DBB until a year-when his DBB is off for bathtime, he

> > >doesn't really even attempt to straighten it out. I'm afraid it's

> > >overcorrecting his left foot, which was normal. What's a person to

> > >do?

> > >

> > >

> >

> >

> > _________________________________________________________________

> > Add photos to your messages with MSN 8. Get 2 months FREE*.

> > http://join.msn.com/?page=features/featuredemail

>

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