Sydneysmom04
New member
My daughter Sydney is 3 1/2 and was diagnosed at 9 months with CF due to failure to thrive. Her sweat tests came back positive and then borderline so we had a genetic blood test done and she has 2 copies of Delta F508 gene. It was really hard at first trying to get a good support system of Doctors who we liked and had positive outlooks on the disease. I changed pediatricians 5 times before finally finding the current one who seems to be on the ball with my treatment plan.
Syd's health has been primarily good. You'd never know looking at her that she is a child with CF. She's 3 4 inches tall and wieghs 51 pounds. The CF clinic Dr's at Nemours are always astounded at her health. My families support and our faith in Sydney helps alot. She takes Creon with everything she eats, and at the beginning of this year she started Pulmozyme inhaled solution. She takes albuterol as needed and last December she had to do 28 day TOBI due to testing positive for pseudomonas but the culture after her treatment was clear. She's had a 22 day stay in the hospital when she was first diagnosed and then one 24 hours stay when she was 2 as a precautionary because she had a case of bronchitis after I joined a playgroup with her.....that did'nt last. She has dance class once a week and has a few friends that she has regular playdates. I'm lucky though because my mother watches her when I work, so she does'nt have to attend daycare. Recently due to the seperation from her father I've had financial difficulties and we'd applied for SSI and disability, We've been denied twice and now have to go through a judge for a 3rd appeal. But other than the everyday trials of a three year old, I'm so blessed that she's remained so healthy. I think it all has to do with attitude and how you go about fighting the disease. We think of ot here as Life altering......not Life threatening.....it keeps us aware of everyday that we're healthy and happy. So hang in there, and if you have any questions I'll be glad to answer what I can.......
Syd's health has been primarily good. You'd never know looking at her that she is a child with CF. She's 3 4 inches tall and wieghs 51 pounds. The CF clinic Dr's at Nemours are always astounded at her health. My families support and our faith in Sydney helps alot. She takes Creon with everything she eats, and at the beginning of this year she started Pulmozyme inhaled solution. She takes albuterol as needed and last December she had to do 28 day TOBI due to testing positive for pseudomonas but the culture after her treatment was clear. She's had a 22 day stay in the hospital when she was first diagnosed and then one 24 hours stay when she was 2 as a precautionary because she had a case of bronchitis after I joined a playgroup with her.....that did'nt last. She has dance class once a week and has a few friends that she has regular playdates. I'm lucky though because my mother watches her when I work, so she does'nt have to attend daycare. Recently due to the seperation from her father I've had financial difficulties and we'd applied for SSI and disability, We've been denied twice and now have to go through a judge for a 3rd appeal. But other than the everyday trials of a three year old, I'm so blessed that she's remained so healthy. I think it all has to do with attitude and how you go about fighting the disease. We think of ot here as Life altering......not Life threatening.....it keeps us aware of everyday that we're healthy and happy. So hang in there, and if you have any questions I'll be glad to answer what I can.......