Karen from Canada wrote me and asked a few questions.  They were good questions so I am posting them here. 

1. I know you have been treating Erin with Naproxen.  Did Dr. K have any comments about doing so?  Positive comments?  Negative?  Neutral?  I am curious because I tried to find a discussion of Naproxen specifically in the Treatment Guidelines, but couldn’t find it (maybe it’s discussed under a different name??).

He had us fill out a questionnaire when we first arrived.  On the form, it asked which medications Erin was using.  I didn’t recognize any of the medications and none of the options said Naproxen.  So I wrote it down and he said Naproxen was perfectly fine.  Dr. Kaplan said to keep her on it while she’s in this active phase.  Also, Naproxen is another name for Aleve.  I think most NSAIDs are safe but he may have listed the medications that have been proven effective in other FOP patients.

2. The drug they’re working on - is it based on that “dorsomorphin” substance discussed in the Treatment Guidelines, or something else altogether?

I vaguely remember him using that term so I can’t say for sure.  However, he did say that they can never “cure” FOP b/c it will kill the patient.  There’s a story he mentioned where they tried to turn off the gene while the embryo was developing.  That baby mouse died.  Then he mentioned they tried to inject another embryo with tetracycline at the end of the pregnancy.  I can’t remember what happened to that mouse.  I’ll ask Alan what he remembered.

3. Do they still plan to have a “name the FOP mouse” contest?  Haven’t heard anything about it recently…

No, he didn’t mention the contest.  I am almost certain that there are more than one mouse in the lab. 

4. OK, this isn’t about the FOP lab specifically, but I am wondering how Erin’s arm is.  Did the Prednisone eliminate the flare-up, or has she been left with a new arm limitation?  Hoping for no new limitations…

I told Dr. Kaplan about her arm.  He felt it and said that it was fairly normal for her age.  I told him that I used the Prednisone and the swelling didn’t get any larger.  He said that some flare-ups don’t have any swellings.  He did say that Prednisone was safe to use just as long as the flare-up wasn’t in the trunk.  So, it may have prevented any more swellings but she is now limited in her left arm.  It’s even more difficult for her to put on and take off shirts.