Pyridoxine dependent Epilepsy

I am the mother of a 6 yr old girl diagnosed at 3 days old with pyridoxine dependent epilepsy (PDE).  Luckily she has been seizure free since 2009.  She is controlled currently on 400mg of B6 daily.  She is an otherwise healthy 6 yr old girl in grade 1.  She is talking, although she didn't start speaking until she was 4, and start walking at age 2.  We have "verbal apraxia" and some gross motor skill delays.  She is starting to read, and is almost at par with kids her age.  My concern is that we are being followed by Metobolics at our Children's hospital and they have stated that the recommendation for an adult is not to exceed 500mg of B6 daily.  They have advised us that when Our daughter reaches 58lbs (which is only 6lbs away) that we increase her to the 500mg daily as her pipocolic acid levels remain high.  I don't know where we go from there.  Do we just sit and pray that 500mg is enough though her levels remain high.

I would love to talk with other PDE families and fighters to see what is working for them.  What research is out there, who do you recommend? Dr. Gospe is following our daughter with the PDE registry in Seattle however we have never been able to make contact with him directly for these answers.

I am also here for support of other families experiencing PDE.  We are a small community that needs to support eachother.

Thanks,

Tanya