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Your first meeting with a prostheticist or orthotist

Originally this section was "your first meeting with a prostheticist," but we've discovered that for PFFD, meeting with an orthotist may be a better first meeting.

In our case the knee and below was unaffected and the local orthotist had been working with other PFFD kids for years and had a great design so it was a great fit for us.

As Nico13 said a good prostheticist or orthotist is very important.

As parents we like to think that the people interacting with our children have their best interests in mind. Unfortunately that isn't always true. Some professionals will look at your child with dollar signs - in other words an opportunity to charge you or your insurance company large sums of cash. Here are some questions to ask your prostheticist.

1) Have you treated children with PFFD before?
1a) Can you give us some references?
2) Have you heard of the Dr. Moseley PFFD design? (they may not have heard of him by name - they but should at least be familiar with the concept of allowing ankle mobility)
3) Have you reviewed our child's X-rays with the doctor?
4) How do you work with our doctor (orthopaedic specialist or physiatrist)?
(an aside: hopefully the answer is closely or that they confer frequently or the like. A relationship that my wife and I like is the doctor and the prostheticist are both in a clinic so they can both discuss what to do at the same time. (in our case the doctor was a physiatrist who had worked with many PFFD children)

5) How much will this cost our insurance company? I hesitate to name specific figures since that will change over time and location, but our first prostheticist, without reviewing the specifics of our case, created for our very first prosthesis a failure that was about $5500 while the second one was based on a shoe-lift concept that at the "shoe doctor" would cost about $50. Yet, the second one was the one that worked fantastically well while the first one ended up being thrown away after 3 months of trying it out and finding that it was actually contraindicated. Did the insurance company pay for nearly all of it? Yes - but it didn't stop the feeling of being taken advantage of and the growing anger of watching our child get large bruises up and down her leg while being told for 3 months that crying, inability to move, and pain was normal.

The lesson we learned is that since there is no PFFD standard model for prothetics/orthotics - having a doctor who has knowledge of PFFD (like a physiatrist) prescribe something works better than having a doctor ask a prostheticist who has no experience with PFFD to come up with something. Finding a protheticist/orthotist who can think outside the standard model of prosthetics, is good too.

An aside about costs: We've been very happy with our prosthosis - but when we moved we had to look around for a new prostheticist/orthoticist. Interestingly, when we talked to one prostheticist and showed him what we were already using he said that he'd have to charge our insurance company $8000 for a device made exactly the same way. Why? Because, he said, he used "prosthetic insurance codes." Our last provider was using "orthotic insurance codes" so, he was charging under $2000.