I have a 3 year old daughter, Maggie-Faye with CF. My husband and I found out after I was pregnant that we carried DeltaF508. We met with Dr. Terry Robinson of Stanford before Maggie-Faye was even born and discussed how we would approach her treatment. Maggie-Faye started treatment when she was 1 week old.
Our decision to go with Dr. Robinson was based on his aggressive approach to the treatment of CF. In addition to doing the vest twice a day, Maggie-Faye is currently on:
Albuterol
Hypertonic Saline
Pulmozyme
Augmentin (as a profolatfic antibiotic)
Zithromax
Flovent
ADEK vitamins
Creon 5 enzymes
Myralax
Maggie-Faye has also had 2 infant pulmonary function tests, 1 CT scan and 1 controlled ventilation CT scan (the FIRST child to have it done at Stanford).
Here's the important part: Maggie-Faye's lungs are CLEAR. She is above the 75 percentile in growth. She has not had any hospitalizations and shows no symptoms of the disease.
I cannot say enough good things about Dr. Terry Robinson and the staff at the Stanford CF center. I truly believe Maggie-Faye is doing as well as she is because of the aggressive fight we are fighting with Dr. Robinson leading the way.
If you have any questions, please let me know.
Holly
Mother to Maggie-Faye, 3 years old w/CF and Ellie due 11/25/09 carrier (thanks to PGD/IVF)