Vascular Birthmarks Foundation Forum - View Single Post - PWS on back and leg-infant
View Single Post
  #8  
Old 02-24-2010, 04:13 PM
samsherman samsherman is offline
Junior Member
 
Join Date: Jan 2010
Posts: 8
Default

Hi Leah! So glad to be hearing from you all. What we have learned (well, we have learned a lot, but this most importantly) over the last several months is to not allow your child to be dismissed as simply a cosmetic issue. INSIST on seeing a specialist and being evaluated. We now know how many other complications may arise and are now educating ourselves and being followed by specialists. Our daughter is having her MRI next week to assess her spine. Does your sons PWS cross his spinal cord? Our daughters does slightly which we have been told could cause her to have a tethered cord. We are anxious but hopeful that this is not the case. Anyway, it is great that you are getting additional work-up. Where do you live? Feel free to conatct me at the email above. Look forward to hearing from you and best of luck.
Samantha
Reply With Quote