Re: Delicate Subject Matter...

March 22, 2000

ee,

Sorry to hear you're being given such a hard time. You have every right to ask Dr. P for a second opinion and if Dr. D doesn't like it that's his problem. I'm sure he's very competant but he should be open to a patient wanting a second opinion when she's not liking what she hears. I get the impression that Drs sometimes think that they are their patients' bosses. It's your right to insist on a second opinion, please don't let yourself be intimidated just because he's a doctor.

Good luck!

Dan

Delicate Subject Matter...

Hi All,

Here is the deal, I'll just jump right in.

I have noticed a distinct differenct between Dr. P and Dr. D. Ponseti is extremely optimistic. I believe that left in his hands, he would treat as least invasively as possible, trying to go that extra mile to avoid operations, or to use the smallest oen he could.

Dr. Dietz however, I get the distinct impression that he has already thrown in the towl on 's care and resigned his mind to giving operations first, with out going the extra mile for nonsurgical treatments.

This started the first day I was in Iowa. Doctor Ponseti came in the room and with enthusiasm said, "Oh yes we can fix him up, no problem!" paraphrasing here. Shortly after, Dr. Dietz came in and was like, "Well, I don't know,...we'll do the best we can (but it doesn't look hopeful)". I mentioned to him that Dr. Ponseti seemed very optimistic, and Dr. Dietz said something like,"Well, we don't always see eye to eye." That was my first warning clue....

So Ponseti left, we finished off up there with Dietz. Came home, had the problems with the DB's and such....I sent Dr. PONSETI an e-mail when he returned explaining and detailing the events that have occured here. Well Dr. DIETZ returned teh call and told me, "From now on, you talk to me, not Dr. Ponseti." that irritated me a lot.

Furthermore, Dr. Dietz said he was not surprised the DB's are causing problems because he is using them for a purpose they were not designed for on . He said if the irritation continues, to abandone their use.

Well, that's just peachy, because he went on to say that if I abandone their use, cannot have the tendon transfer operation -- oh no -- he'll need the BIG operation (Doctor's word for it)...

he also went on saying that at 's late age, even the tendon transfer was a chancy option, at best! WHAT? They lead me to believe up till today that this was a fairly routine treatment for regressed children of this age and I could pretty well bank on that operatin happening and on that operation correcting the problems!

On the video, they treated a SIX year old child with the Tendon Transfer, but Dr. Dietz is saying today that is getting too old and it all depends on how fast his bones grow leaving me to think I need to go plug the kid into a cow for six months or feed him steroids to make him grow faster cuz if he doesn't grow fast enough, he'll miss the window of opportunity for the "Small" operation and will require the dreaded "Big" operation....Dr. Dietz was taking the back door approach to prepare me for the worst, as if he has already decided that, but doesn't want to admit his decision to me yet.

I'm so frusterated. How do I get around Dr. Dietz and deal with the doctor who isn't negitive in his opinions about my son's feet?

HELP!

ee

March 22, 2000

ee,

I totally agree with Dan. You have the right to ask questions

concerning 's treatment and get clear answers! You've really gone

through a lot. I didn't have to go through half of what it sounds like

you've gone through and can't imagine the stress you're under. It

sounds like you've given Dr. D the benefit of the doubt for now (your

reply to ), which is what I was going to suggest. But you do

deserve answers to your questions. Perhaps you could make a list of

your questions, write them out so you are clear, and contact the Dr.'s

office. Even all those questions about the DBB should be answered by

someone in the office. Maybe there are other support personel (ortho

tech's, nurses, physician assitants, ect..) who are familiar with the

Ponseti Method who could answer at least some of your questions and then

forward the rest that really should be answered by the physician?

Just remember that all the decisions you have made up until this point

were made with the information you had at the time of each decsion. I

think as parents we all have those moments when we wish we had done

something differently (an hourly occurance in this house these days with

my five year old) or the infamous " if I had only known then " . You know

that you are doing the best you can do for . Sometimes you need to

hear that from someone else so I'm saying it even though I know you

already know it.

I also don't see why there would be a problem contacting Dr. Ponseti. I

really just want you to keep trusting those motherly instincts of yours.

Please keep us posted and I hope everything works out for you and .

Donna

March 22, 2000

Wow, thanks. I was expecting to get insulted and berated for saying what I did.

s.