Re: update on son's progress (blisters with Markell shoes)

[Guest guest]

,

Will Robby be wearing the AFO during the day and the FAB at night, or

did your doctor tell you that he doesn't need to wear the FAB any more?

If you can manage the trip to Baltimore, I would highly recommend it.

It will honestly give you peace of mind when you can get a second

opinion from a highly recommended doctor like Herzenberg as to whether

Robby's foot is fully corrected and he's on the right path.

So go for it!

& (3-16-00, left clubfoot)

[Guest guest]

,

I just wanted to agree & add to what is saying here - if the

doctor is prescribing just AFO's alone (not attached to a bar) this is

not a good thing. AFO's alone cannot hold the outward rotation of the

foot and most often their use results in relapse. There are other

alternatives to the Markell shoes, if Robby has atypical feet (they

are harder to maintain correction, and perhaps this is what your

doctor meant about the structure of his foot) he would probably

benefit from the Ponseti/ brace. Let us know what your doctor

is recommending and we can go from there.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

>

> ,

> Will Robby be wearing the AFO during the day and the FAB at night, or

> did your doctor tell you that he doesn't need to wear the FAB any more?

> If you can manage the trip to Baltimore, I would highly recommend it.

> It will honestly give you peace of mind when you can get a second

> opinion from a highly recommended doctor like Herzenberg as to whether

> Robby's foot is fully corrected and he's on the right path.

> So go for it!

> & (3-16-00, left clubfoot)

>

[Guest guest]

Hi ,

I agree with here and urge you to go to see Dr. Herzenberg as

soon as you can...AFO's do not work for cf. Without the attached bar

in between the feet to hold the correction, the foot will start to

relapse. As you know, an idiopathic club foot will 'want' to revert

back without bracing and the AFO just dosen't hold correction well

enough, you NEED to have that attached bar to hold the outward

rotation AND dorsiflexion.

There are other options for Robby Jr. - have you heard about

's shoes? There are pics of it on this site in the photo's

section. They were designed with Dr. Ponseti's input specifically for

kids that have had problems (blisters/pressure sores) in the markell

shoes. A mold of the childs foot is taken and they are made of a very

soft leather. Parents with kids in these shoes rave about them!

It kinda makes me nervous to hear when a doc treating a cf baby

perscribes an AFO as there have been sooo many relapses and further

relapses associated with them. Dr. Ponseti himself says that they

don't work - so, if I were you, I would take Robby Jr. to Dr. H for

his opinion, why take the chance kwim?

& Grace 20mos

urcf FAB 13hrs

>

> Hi Everyone,

>

> First off thank you so much for the posts and e-mails making me

feel

> much better about my son's blister and regression. I'm definitely

> feeling like I did the right thing taking him out to help his

blister

> heal. We saw his ortho and he stated that it appeared that Robby

Jr

> was probably having problems because of the structure of his foot

and

> has prescribed an AFO to see if that provides more support and

keeps

> his foot better. We get that on the 30th and will see how that

works.

> My dh and I agree that if after the AFO we still ahve major

concerns

> then we are probably going to look into at least getting a second

> opinion in Baltimore.

>

> Thanks again

>

>

[Guest guest]

In rereading the prescription it says the AFO's WITH the Dennis

Brown Bar. Is there such a thing? Just when it hought I knew what

I was hearing I'm confused again :-)

Thanks,

karen

> >

> > Hi Everyone,

> >

> > First off thank you so much for the posts and e-mails making me

> feel

> > much better about my son's blister and regression. I'm

definitely

> > feeling like I did the right thing taking him out to help his

> blister

> > heal. We saw his ortho and he stated that it appeared that

Robby

> Jr

> > was probably having problems because of the structure of his

foot

> and

> > has prescribed an AFO to see if that provides more support and

> keeps

> > his foot better. We get that on the 30th and will see how that

> works.

> > My dh and I agree that if after the AFO we still ahve major

> concerns

> > then we are probably going to look into at least getting a

second

> > opinion in Baltimore.

> >

> > Thanks again

> >

> >

>

[Guest guest]

,

I'm coming in a little late here, been offline all weekend. There are

a few doctors who are trying various forms of AFO's attached to the

bar. The standard AFO - just a hard plastic shell, is still not a

good option because the feet slip out of them so easily. There is an

AFO with a soft molded insert that Dr. Dobbs in St. Louis is using and

I think some other docs might be trying something similar to this.

You can see and read about his brace here:

http://members.tripod.com/ponseti_links-ivil/sitebuildercontent/sitebuilderfiles\

/dobbs_brace_guide2.pdf

There are some pluses and minuses for this type of brace - one plus is

that they've seen very few sores and blisters. They're also very easy

to put on.

Hope this helps with the confusion,

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

> > >

> > > Hi Everyone,

> > >

> > > First off thank you so much for the posts and e-mails making me

> > feel

> > > much better about my son's blister and regression. I'm

> definitely

> > > feeling like I did the right thing taking him out to help his

> > blister

> > > heal. We saw his ortho and he stated that it appeared that

> Robby

> > Jr

> > > was probably having problems because of the structure of his

> foot

> > and

> > > has prescribed an AFO to see if that provides more support and

> > keeps

> > > his foot better. We get that on the 30th and will see how that

> > works.

> > > My dh and I agree that if after the AFO we still ahve major

> > concerns

> > > then we are probably going to look into at least getting a

> second

> > > opinion in Baltimore.

> > >

> > > Thanks again

> > >

> > >

> >

>