Re: Digressing

[Guest guest]

Perhaps the Dr treating your child is not really following the

Ponseti method exactly. One part of your childs treatment that is a

little different is that she was put into the Dbb and in it for 2

months BEFORE having a tenotomy. This should have been done

before. Also if you give more info such as how long was she in the

DBB for 24 hours a day (should have been 3 months) and how many

hours was she in the DBB after that .........and was the time

decreased again. There are so many factors that must be " just so " .

The degree that the shoes are rotated outward.......do you know this

information? Also I would say that she does not surgery.....just a

second opinion from someone more experienced in the method. Include

your current Drs name and your location and I am sure someone on the

board will direct you to a good Dr for another opinion. You will

get more help once you provide some more info....I promise! Will

check back later. >

>

> I posted this in another clubfoot group I " m in and someone told me

I

> could get a lot of help here, so here it goes...Thanks! )

>

> >Ok, my daughter is 14 1/2 months old now, she was casted at 5 days

> >old, got the DBB at about 2 months, then had the cord release at 4

> >months and has been in the DBB since the cast was taken off from

the

> >cord release. Her foot was looking so good for a while, but the

> >past 6 months the foot has started to digress, and I dont

> >understand? I've done everything they told me to, she wears the

DBB

> >at night and wears a pair of the shoes they gave me during the

day.

> >Is it common to digress like that? She goes back to the Shriners

> >next week and they said they were going to do Xrays and all that,

> >and decide whether to go ahead with the corrective surgery. I just

> >dont understand why it's digressing, is there something I'm not

> >doing that I should have done? I've done enough research about the

> >ponsetti method and seems to have worked for so many kids, I just

> >can't help but feel I'm doing something wrong for her to digress

> >like this.

[Guest guest]

DON'T LET THEM DO SURGERY YET!!!!!!!!!

ok, let me calm down now and simply say DONT' LET THEM DO SURGERY

YET!!!!!!!!!!!!!!!1

From what you write, she was NOT treated right to begin with - so no wonder she

is digressing. You have time to find a qualified Ponseti Method doctor, back up

and start over and I urge you to!!!!!!!

Everyone on here agrees - once they do surgery there is no going back - you have

nothing to lose by seeking a Ponseti Method doctor and there are a few at

various Shriner's Hospitals others here can direct you to them.

Please DON'T LET THEM DO SURGERY! The method they're using on your baby is all

wrong - everything about it is wrong. If they told you this was Ponseti method

they used, they don't know what Ponseti is, or WHO he is. He's the

Edison of club foot. For one thing, you don't put a baby in a DBB and then do a

heel cord lengthening later on. And you don't put a baby in to a DBB for a few

hours a day. The heel is fixed PRIOR TO the DBB - and the DBB is worn 23 hours a

day 7 days a week for the first 3 months of it's use then it gradually tapers

down to about 12 hours a day.

There IS NO OTHER SHOE involved. Shoes don't do squat - it's the bar on the DBB

workign miracles, if it were a matter of wearing shoes shoot we'd all be doing a

happy dance but it's not the shoes Honey! Throw them out the window, it's teh

BAR holding the feet at a very specific angle and distance apart as the bones

grow and harden. And....the DBB does not correct a foot, it HOLDS on to the

correction the casting achieved.

Back up to a Ponseti doctor, a few weeks of casting, then the DBB and never look

back. on this board has a baby who is aaaaaaaallllllllll messed up cuz

he was operated on before she found Dr. Ponseti. I have an older son

aaaaaaalllllllllll messed up - but I also have a younger son who is perfect

because we went to Dr. Ponseti instead of letting some other quack work on him

first.

I gotta run but hey - it's OK. You did what you knew to do at the time - now

you're learning different and we're here to hold your hand and get you through

it.

God bless ya.

s.

Digressing

I posted this in another clubfoot group I " m in and someone told me I

could get a lot of help here, so here it goes...Thanks! )

>Ok, my daughter is 14 1/2 months old now, she was casted at 5 days

>old, got the DBB at about 2 months, then had the cord release at 4

>months and has been in the DBB since the cast was taken off from the

>cord release. Her foot was looking so good for a while, but the

>past 6 months the foot has started to digress, and I dont

>understand? I've done everything they told me to, she wears the DBB

>at night and wears a pair of the shoes they gave me during the day.

>Is it common to digress like that? She goes back to the Shriners

>next week and they said they were going to do Xrays and all that,

>and decide whether to go ahead with the corrective surgery. I just

>dont understand why it's digressing, is there something I'm not

>doing that I should have done? I've done enough research about the

>ponsetti method and seems to have worked for so many kids, I just

>can't help but feel I'm doing something wrong for her to digress

>like this.

[Guest guest]

I am going to tag on with ee here and say DON'T let then do

surgery! Even if it is eventually needed, there is NO reason to do

it now. It used to be thought that a relapse after age one was more

difficult to manage with casting, but this is NOT TRUE! My son - who

has a complicated form of clubfoot (atypical) - was casted & had a

tenotomy from 1 mo to 3 mo and then wore the DBB for the prescribed

length of time but because of the way his foot is relapsed. He was

casted again by Dr Ponseti at 9 - 10 mo and went back into the DBB

for the correct times. At 13 - 14 mo he was casted yet again and

recieved a different kind of DBB - the Sandals.

Because of some recent problems we have had he may be casted again in

Feb or March (a whole year after the last casts!) at which time he

will be 26 mo old. Obviously I hope this isnt the case ... that we

can address the problems he had with his shoes and avoid the casting

all together, but even if not, there doesnt seem to be any reason he

cant be re-casted yet again.

Now, if they can cast my son that many times (which I want to say is

very rare that it would even be needed) there there is no reason they

can't re-cast your daughter and get her foot straightened back out!

Seek out a different doctor, one that is fully experience in

correcting " older " children's feet, and try again! I think the next

closest doctor to you who would have these qualifications is Dr Dobbs

at St Louis Shriners.

Angel