US researchers say they can now watch genetic diseases unfolding in the laboratory after finding a way to make large numbers of affected cells
http://news.bbc.co.uk/1/hi/health/7791283.stm
http://news.bbc.co.uk/1/hi/health/7791283.stm
spinal muscular atrophy (SMA),
- Thread starter zar
- Start date
Grampa Reynolds
New member
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
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
One more thing Dr Paino and Dr Feinerman are in the process of doing gene therapy for a friend of mine from New York who's son has SMA. Dr Feinerman and Dr Paino also told me that my daughter "if nature takes the course like we expect that Ava would make a FULL recovery" Another friend of mine who's son was born blind, had a trach so he can breathe, has severe spastic quadaplegia. His doctors actually told his parents to stop feeding to let him die. Dr Paino told her that if he had a shunt put in that he should be able to have his trach removed his vision restored and his facial expressions restored as well. He would get his suck/swallow reflex back allowing for eating and drinking without his feeding tube. Dr Feinerman and Dr Paino are two doctors who are working miracles. All of my daughter's doctors told me that Ava would never do anymore than exist and by God's Grace Ava has defied all the logic of medicine. Ava shouldn't have survived birth much less be able to do all the things she does. Your baby granddaughter couldn't be in more capable hands than Dr Feinerman and Dr Paino. Dr Paino was actually the nuerosurgeon of the year in 2001. The clinic in Peru was 5 hours from Miami frim So Cal the trip would take alot less. We went on Lan Chile and the flight was flawless and the seats were like the US first class.
Hope this helps
Tami Milam
Hope this helps
Tami Milam
Grampa Reynolds
New member
Infants
Tami
Thank you for your responses. This type of information is what we need as we continue our analysis. We hope to be in contact with Dr. Feinerman soon, we understand they are treating an SMA child. I will send you a private message so to arrange a phone call from my daughter to you.
I did see your daughters photos on their website, may she continue in her healing process.
God Bless - "Grampa" Reynolds
Tami
Thank you for your responses. This type of information is what we need as we continue our analysis. We hope to be in contact with Dr. Feinerman soon, we understand they are treating an SMA child. I will send you a private message so to arrange a phone call from my daughter to you.
I did see your daughters photos on their website, may she continue in her healing process.
God Bless - "Grampa" Reynolds