Distressing news from Portland Shriners

[Guest guest]

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

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