For an understandable definition of Pseudarthrosis in a simple layman terms.  Additionally, a video of an orthopedic surgeon, as well as a family, summing up their journey in 6 minutes.

An ever-growing list of surgeons, by state and country with links, recommended by the Pseudarthrosis community

Once you find someone, here is a list of questions you may want to ask to find out if this surgeon is right for YOU.  Remember, you are putting your child’s future into this doctor’s hands.  It’s imperative that you feel comfortable with him/her, and their philosophy of treatment.  A printable version is available for you to take to your appointment.

If your child has sustained a fracture, here is a list of surgical questions you may want to ask.  A printable version is available here to take with you to your appointment.  It has space to write the answers – trust me.  This is stressful, you’re going to want to write it down, because as soon as you walk out of that appointment, everyone and their grandma will have more questions for you to answer than you can believe.

Once you have a brace, what do you wear under it?  What about over it?  Believe it or not, most patients aren’t provided with the special socks they need to keep their kids comfortable and dry.  Many parents are also surprised that many (many many many) shoes will no longer fit your child’s brace foot. So here are some bands we’re had luck with, or heard good things about.

A good list of medical articles about CPT.  Not all are easy to read, but there are a couple videos with good somewhat laymen explanations.


So, what’s this brace going to look like anyway? If your orthotist is through a company that orders through Cascade DAFO, like our does, this is a link to their Creation Station. Here you can see all the available transfer patterns (there are a LOT!) all the different padding colors, all the strap colors, and even patterns for the strap on the instep.

The best part about getting a new brace is choosing someone unique, pretty, or cool. So design it (free!) and take the design into your orthotist when the brace is molded so your choices can be applied to the brace he or she is ordering. Don’t forget to special request that the pattern be added the the front plate too!

Help and Resources for those dealing with Neurofibromatosis (NF1).

Casts are a huge pain, and you are going to be very familiar with them.  One of the hardest parts is bathing, or worse, being in a cast through the summer.  Dry Pro Cast Covers helped make life just a little bit easier for us, so Amy could not only bathe, but swim!

This is the company we went through for Amy’s bone stimulation system.  The jury is still out on whether it will help, but the studies look promising.  A huge bonus is that it was covered by her insurance, and treatment doesn’t hurt at all.


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