The Dr. Prescribed a vest for my 5 yr old(diagnosed at 4) ....who has no cough, wheezing, breathing troubles, oxygen is always 100%, x-rays are clear. Because I'm very skeptical about the treatment that has been suggested. I asked if it was necessary for us to fill that rx at this point in time. My Dr. Told me that she has to prescribe the vest because that is a standard treatment for CF patients and she could get in trouble for not following CFF guidelines. I was also told by the Dr. that we don't have to fill the rx unless my daughter starts exhibiting symptoms. My concern was that my children weren't receiving individualized treatment/care. She was agreement and said that "Unfortunately, we have to live with this diagnosis" and admitted that this is one of the downfalls of the CF newborn screening. The CF foundation has standard guidelines for treatment and because this disease has such a broad spectrum of symptoms/mutations, I don't believe that treatment should be the same for every child. These are NOT cookie cutter cases. We've been told by the staff at our clinic that we are very lucky and that if children aren't presenting symptoms by the age of two, they tend to be "generally healthy". It's a waiting game for us. We go to our clinic appointments, we wait for two hours for the Dr. To listen to their chests, ask a million questions and then we're sent home with a clean bill of health...."for now." I realize we are extremely fortunate but it's frustrating when I'm told that my CF children are "healthier than 90% of the healthy children" they see. have to be an advocate and question every treatment and prescription on their behalf. What also worries me is that I was told that they don't know a whole lot about this mutation so their plan of action is continued "monitoring". My son and daughter were both prescribed ADEKS and Albuterol(as needed). So far, they are pancreatic sufficient and have had NO issues with vitamin/nutrient absorption. When I asked why they would need ADEKS, I was told that most CFers have trouble vitamin absorption. My CFers do not fall into that category so why would they need ADEKS? I was told that, that is a standard for CF patients...with classic symptoms. My children do not fall into that category. Same thing with the Albuterol. Why would that medication be prescribed to a child that had no breathing problems? I was told that it wasn't a preventative treatment but a "standard treatment" for classic CF. We have another appointment on Friday. CF clinic days are on Thursdays but I told the Drs. that I was sick of being charged for a nutritionist to come into the room and tell me he has no suggestions and they agreed. I have to remind the healthcare professionals that no one cares for the well being of my children more than I do so prepare to be questioned. To me, my kids aren't just some diagnosis with a standardized treatment plan.
