SMA Type 1
I thought it would be helpful to all viewing and for our family to post (with brevity)the following regarding our grandaughter' status and our understandings to date:
Current status: almost 7 months old, diagnosed SMA Type 1 (blood test confirmed), G-tube w/Nissen 6 weeks ago, mostly breast milk, typical suction, cough assist & bipap equippment as needed, Sodium phenylbutyrate and L-carnitine. Been to UCSF and Stanford already, Hospital stay in Childrens Hospital Central CA (yes we've done alot since 10-17-08)
Travel: Infant SMA Type 1 children are challenged to fly long trips, we were schedule to go to Beike, China but could not confirm electrical use whenever needed by all 4 major airlines. Live in CA - can travel via motor home to So. Cal., Arizona, N. Mexico, Mexico, Uthah,etc.
Therapies/Doctors under consideration: Steenblock/Paine/Ramirez Del Rio, Branyon, AZ, CA Stem Cell Irvine, Feinerman(w/o Nabavi), Other?
Reviewed but rejected: Medra/Rader, Stem Cell Biotherapy (we mean nothing negative to those who have used such, just our opinion).
Umbilical versus Embryonic: We are still not clear on which is safer or possibly has a bettter chance for success.
Chain of Custody/Quality: Read and are using Dr. Young's questions/protocol. Our question to all is: Do the companies/Laboratories that you have used provide satisfying information?
Time: Many SMA iType 1nfants do not live past 1 or 2 years. Time is against us, however some Type 1's are over 10 years old - We remain confident and positive.
Your comments are appreciated.
"Grampa" Reynolds