Re: Thanks for the info-Portland Shriners

[Guest guest]

Juli,

I haven't seen Kori post in a few days, but I'm sure she'll be on

soon. She is in the Portland area and can help you with finding a

doctor who is using the Ponseti method properly based on her

experiences there. Here is a link to a recent post that she had

about the Portland Shriners:

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/24762

If your daughter's foot was not turned out at 70 degrees in the last

cast, then she is definitely not getting the Ponseti method.

Here is a website that has some additional information:

http://pages.ivillage.com/ponseti_links

There's also a good medical booklet from Global HELP that explains

the method, it's available in pdf format that you can download here:

http://www.global-help.org/publications/ponseti-cf.html (there are

graphic pictures on some pages- be warned)

Here's Dr. Ponseti's website:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

Is your daughter seeing Dr. Aiona or Dr. Sussman at the Shriner's, or

a different doctor?

I'm not sure what to tell you about your description of your

daughters' feet " curving " in.....some kids' toes do curve inward. Is

this a new development? Is it just her toes, or is it her whole fore-

foot? Do you have any pictures of her feet that you can share with

us?

Hopefully we can help you help your daughter! Hang in there- I know

it's frustrating!

Hugs!

& (3-16-00), left clubfoot

> > >

> > > Hello! I posted last month about my daughter and I really

> > appreciate

> > > the information. I was looking at some of the pictures and her

> feet

> > > clearly we're not staight enough. Hence the blisters from the

> dbb

> > > shoes. We're going back to Shriners and she's back in casts.

> > > Thanks,Juli

[Guest guest]

,

Thanks again! My daughter is seeing Dr Aiona only and I was told

they (shriners) only use the Ponseti Method. The former Doctor told

us he had trained with Dr. Ponseti but now just says he went to the

university where Dr. Ponseti teaches. I checked with my Husband and

her last set of casts after the Tendoectomy her feet were NOT at a

70 degree angel. I'm taking her back to Shriners on the 14th and I

plan to let them know about the casts not being at the correct

angel. Hopefully this back tracking will fix things and yest just

her toes curl. Also I read what Kori wrote and I'll try to avoid Dr.

Sussman. Juli

> > > >

> > > > Hello! I posted last month about my daughter and I really

> > > appreciate

> > > > the information. I was looking at some of the pictures and

her

> > feet

> > > > clearly we're not staight enough. Hence the blisters from

the

> > dbb

> > > > shoes. We're going back to Shriners and she's back in casts.

> > > > Thanks,Juli

[Guest guest]

Juli,

If I were you, I'd print off the Global HELP booklet and bring it

with you (esp. pgs 6-16) and then ask the doctor to explain the

differences between the method that is outlined in the book versus

what method they're using with your daughter. If the doctor knows

that *you* know what the Ponseti method entails, then he'll have to

explain the " tweaks " to the method that he's made. Not

overcorrecting the foot is a *major* tweak. There is a picture in

that booklet that shows the progression of the casts at each cast

change and you can see how the outward angle changes each time.

I hope this helps, and I also hope Kori can get in touch with you

soon as she'll be an immense help to you I'm sure! I hate to say

this, but many places *say* they're using the Ponseti method, but

they're *tweaking* it...and even though a doctor is listed on Dr. P's

site, they aren't necessarily following protocol 100%.

Unfortunately, it's up to the parent to educate themselves about

treatment protocol in order to make decisions on their child's behalf.

Let us know if you have any questions/concerns!

Good luck,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 mo. old

>

> ,

> Thanks again! My daughter is seeing Dr Aiona only and I was told

> they (shriners) only use the Ponseti Method. The former Doctor told

> us he had trained with Dr. Ponseti but now just says he went to the

> university where Dr. Ponseti teaches. I checked with my Husband and

> her last set of casts after the Tendoectomy her feet were NOT at a

> 70 degree angel. I'm taking her back to Shriners on the 14th and I

> plan to let them know about the casts not being at the correct

> angel. Hopefully this back tracking will fix things and yest just

> her toes curl. Also I read what Kori wrote and I'll try to avoid

Dr.

> Sussman. Juli

[Guest guest]

sorry I've been away recently. This really disturbs me, as I was hoping

that Dr. Aiona was still doing things right. I would complain big time,

they're NOT doing Ponseti there. When Darbi was treated there were

modifications, but we lucked out and got through them. And I've always

done longer bracing times at home, Darbi's last cast was about 55 degrees,

but when she got her last healing cast a doc that was training with Dr.

Sussman abducted it to 70 degrees. Pure luck... or I bet we'd be having

problems too.

I was there yesterday picking up Darbi's shoes, and apparently missed our

appointment with Dr. Sussman the day before. Can't get in till

January. grrr...

Juli, are you in Portland? I'll email you my phone number personally if

you like. But what I think you need to do, and you're in a position to do

it is to go in there with the Global Health booklet and point out the

modifications to them and tell them you KNOW they are not doing Ponseti

Method and you want your daughter treated with these protocols

exactly. It's much harder for someone like myself to come back and say *I

hear you're not doing things right* when we're just bracing and Darbi's

foot is not actively being treated. Her Ped is really pleased with her

foot, saw her yesterday and really liked what he saw.

And now it's time to report them to Dr. Ponseti I think. Enough is

enough! This just ticks me off big time. Oh, and I saw the orthotist

yesterday... he hasn't even read my email!! It was *too long* and took up

too much of his hotmail account or something. Whatever!

I'd love to talk to you more about this, I really haven't been online much

lately so I missed this whole thing.

Kori

At 05:24 PM 10/6/2004, you wrote:

>,

>Thanks again! My daughter is seeing Dr Aiona only and I was told

>they (shriners) only use the Ponseti Method. The former Doctor told

>us he had trained with Dr. Ponseti but now just says he went to the

>university where Dr. Ponseti teaches. I checked with my Husband and

>her last set of casts after the Tendoectomy her feet were NOT at a

>70 degree angel. I'm taking her back to Shriners on the 14th and I

>plan to let them know about the casts not being at the correct

>angel. Hopefully this back tracking will fix things and yest just

>her toes curl. Also I read what Kori wrote and I'll try to avoid Dr.

>Sussman. Juli

>

>

> > > > >

> > > > > Hello! I posted last month about my daughter and I really

> > > > appreciate

> > > > > the information. I was looking at some of the pictures and

>her

> > > feet

> > > > > clearly we're not staight enough. Hence the blisters from

>the

> > > dbb

> > > > > shoes. We're going back to Shriners and she's back in casts.

> > > > > Thanks,Juli

>

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