Friends With FOP

In Dr. Kaplan’s upcoming annual report, there is a segment dedicated to the use of muscle relaxants in FOP patients.  Today I got a call from Rehab Medicine Clinic at Children’s Hospital.  She’ll be seeing a doctor in August who is acutally aware of FOP (surprise!) and treats kids with Cerebal Palsy.  There are types of muscle relaxants that have been helpful with relatively healthy muscle tissue that has shortened (as in Erin’s neck muscles).  There hasn’t been a whole lot of studies with muscle relaxants between flare-ups but it’s worth talking to Rehab Medicine about the probability of using them.

I also called the clinic that Erin was supposed to be transfered to for physical therapy once the Kindering Center ended Erin’s care.  Erin saw the PT there a few times prior to the MRI.  I got Erin on the waiting list for their hydrotherapy class.  The waiting list is long but it will be worth the wait.

Erin had a good weekend.  She went to a neighbor’s birthday party and had “dirday cake.”  She ran around with the other kids.  We’re trying to let her run around and be a kid.  It’ll be easier once we can actually get her some head protection.  I called a local company that does neoprene knee braces and hand splints.  I was hoping they could put something together for Erin.  Unfortunately they don’t do custom work and they don’t do head gear.  I really like the idea of Erin wearing a neoprene “crown” of sorts.  The mother in Vancouver BC whose daughter was diagnosed a year ago, she sent me a picture of her daughter’s “headband.”  I thought it was a great idea for summer.  Oh well…I’ll keep trying to find something.  Dawn referred us to the Cranio-facial clinic at Children’s.  Everything has a wait list.   I am sure something will pan out.