If you could move anywhere to help your child with most sever form of PFFD where would that be and why? Where would you move to get prosthetic services, why? Where would you move to get hip reconstruction why? Were would you move to get Van Ness, why? We have the option of moving just about anywhere. We would like to know your opinion.
Places you would avoid are equally valuable.
Where to go to treat PFFD
Speaking as a parent who to-date has gone the prosthetic option:
There are a lot of small adjustments that occur with a child and a new lift. The foot/leg grows quickly and you need to get a new lift often and to make adjustments often. E.g. padding in various spots, bending other areas etc. It is nice to be near a prostheticist and be able to just drop in and have them make the small adjustments needed for comfort and to avoid skin changes on the foot/ankle. For more information about what makes a good prostheticist - see http://www.pffd.org/forum/1 .
Would I move to be close to a good protheticist? I would first try to convince them to open a branch office near where we are. :) But if I were in your position of being able to move anywhere - I would move to be able to make frequent visits.
We haven't gone the surgery route - but as the person who started this site, I've talked to many parents who have and so here is my take on the matter - please note though that we've only talked to several hospitals about surgery and their facilities - not done it ourselves.
In terms of surgery -if you are going the surgical route and have the option of moving to the city where the operation is taking place then I would definitely move to where the procedure is going to take place. The surgery is just a small part (time-wise) of many of the procedures that take place (rotation, lengthening) and the physical therapy is a HUGE component (time-wise). Also with lenthenings after talking to many parents and reading a couple of reports of lenghtenings gone horribly badly, since adverse events are common you want to be ready for frequent trips back to the operating table for various things (infections gone bad, loose pins, bone breaking, nerves being stretched too much, etc.)
Where we went
Our Son son bi-latteral amputations. He has prostetics. We go from Ohio all the way to Spokane,Wa for treatment at Shriners Hospital. That is the best hospital we have ever found. I don't think that we would ever go any where else. They are very up to date on all procedures.... Very respectable. We Love them. Any questions feel free to ask.
Not so much where, but how...
As an adult who was treated by Shriner's Hospitals as a child, I would not necessarily recommend one hospital or doctor over another or tell you to avoid a specific hospital. In fact, a lot of things have changed since I was a child...permissive visiting hours and even patient rights are all relatively new (last 2 decades). I would suggest you always get a second qualified opinion. Chose a doctor who values your opinion and your knowledge of your child. Select a hospital who has transparency (open door to parents) and is focused on the child's quality of life now, not just in the future. Ask questions about pain control and their philosophies and if they incorporate grief/loss counseling and activities for the child and family. Children lose a lot while undergoing medical treatments including their sense of control and safety. Does the hospital understand these issues or do they simply work to distract children with fancy gifts, toys and games? Lastly, do they respect your role as a parent....do they ask if your child can watch PG movies, control TV access as you would, or ask you if your child can receive expensive gifts. It all adds up to create an experience that is important far beyond the surgeon’s scalpel.