Re: Distressing news from Portland Shriners

[Guest guest]

Dang Kori!! What are they thinking? They are taking steps backwards,

not forward. I understand how you feel about wanting to tell on

them, but am glad you are taking the information route first. Best

not to alienate them and make them defensive. . . just yet. You can

still make a difference. If he was going the Ponseti route initially

maybe you can get them to change again. If anyone can, you can. I

have some info saved, but it is docs from , so am sure he will

send them to you in a format that will be complete. I kept bits and

bobs I was interested in.

Go get 'em.

Louisa

6-27-99

Zoe 2-22-04 RCF FAB 23/7

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

[Guest guest]

Kori,

's site, http://pages.ivillage.com/ponseti_links/

has a section with links to many old messageboard posts by and

others, plus links to just about everything available on the web

Ponseti related, frequently updated. (plus links on shoes,

FAB setup, etc.) It might help you reconstruct what you need.

Plus, as I'm sure you know, there's also the Global Health booklet,

and 's " parent research paper " and the introduction to Dr. P's

book, here in the Files section.

This unfortunately seems to happen .. I have often thought

that 'certified', which is a word us parents use (and not, I think,

Dr. Ponseti), conveys a misleading sense of certainty, or precise

formality, to the list that I don't think is there.. (This is just my

opinion.) No matter what, parents need to be wary, and question any

departure from the expected results and/or standard mode of treatment

of the method, if it's what they are after. The parent 'checklist' at

the site mentioned above can help with this too.

Keep us posted on what you are able to find out and/or do. Cheers to

you ..

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi